tag:blogger.com,1999:blog-73780905649820631882024-03-05T19:52:32.740-08:00Ann's Autism BlogAnn Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comBlogger258125tag:blogger.com,1999:blog-7378090564982063188.post-63973224248901987942024-02-24T07:07:00.000-08:002024-02-24T07:08:18.710-08:00Codes of Conduct, Disability and Neurodivergence - How to Get it Right<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidj4ekb9BjuJM7aLgg4vs9v0RWOhki_hU2whRnZZ2AuvOj_jeBk2QsjTim5XxdPFB5hf58BjtRMbHeYjsOA7AYpaso51rHl2mLeBujcaSUwRIf1OZnlQJYMGP1u0bo40qCvLLDs7BaM75q8ieyxOgwt5Ngz3uUvETZ_Ac6BB10GPdplTaScJ4xER_gXD5S/s1192/neurodiversity%20brains.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Three illustrations of heads, with brains focusing on different aspects of information - creativity, love, facts & figures" border="0" data-original-height="494" data-original-width="1192" height="166" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidj4ekb9BjuJM7aLgg4vs9v0RWOhki_hU2whRnZZ2AuvOj_jeBk2QsjTim5XxdPFB5hf58BjtRMbHeYjsOA7AYpaso51rHl2mLeBujcaSUwRIf1OZnlQJYMGP1u0bo40qCvLLDs7BaM75q8ieyxOgwt5Ngz3uUvETZ_Ac6BB10GPdplTaScJ4xER_gXD5S/w400-h166/neurodiversity%20brains.png" width="400" /></a></div><br /> <span style="color: #073763; font-family: arial;">Good Codes of Conduct are a useful thing for so many places. Well worded, collaborative, sensible and kind, they can add so much to the need to keep people safe, and keep them clear about what's expected of them.</span><p></p><p><span style="color: #073763; font-family: arial;">Unfortunately, some Codes of Conduct are written by teams who have not had diversity training.</span></p><p><span style="color: #073763; font-family: arial;">One in every seven people is neurodivergent. For example dyspraxia, dyslexia, ADHD, Tourette Syndrome, autism. An equivalent number of people are disabled. There may be an overlap between the two groups. It is a simply huge number of individuals in almost any organisation. And yet, not one that is often considered.</span></p><p><span style="color: #073763; font-family: arial;">The world needs all kinds of minds, and there's good research showing the benefits of engaging with disabled and neurodivergent people. Often able to 'think outside of the box', often perceiving problems that others had overlooked. Often fantastic at overcoming obstacles, having had a lifetime of having to do just that. And often with considerable strengths of all kinds to offer.</span></p><p><span style="color: #073763; font-family: arial;">Those creating Codes of Conduct may have only the very best of intentions, but some of their examples in their Codes may lead to disabled or neurodivergent people being accidentally and unfairly accused of bullying, manipulative, or inappropriate behaviour. Others may misinterpret neurodivergent body language, face expressions, eye contact, voice tone, or communication style. Instead of reflecting on the potential for misunderstanding, some misinformed groups may engage in a campaign of 'information collection' about the person in question, all of which becomes alleged evidence against the person. Communications are analysed and summarised, a damning case presented - but without the key context they needed - the realisation that the person is communicating in ways that respect their own neurology, and their own cultures. </span></p><p><span style="color: #073763; font-family: arial;">How easy has it been for people to disclose that they are disabled, or neurodivergent? How easy is it for them to engage with any inquiry or disciplinary process, in a way that will be fair for them? How many injustices have inadvertently been carried out?</span></p><p><span style="color: #073763; font-family: arial;">I'd like to look at some examples where there can be pitfalls. Again, stressing that people may have the very best of intentions about all of this.</span></p><p><span style="color: #073763; font-family: arial;">"Repeatedly emailing people with endless information."<br /><br />Is it bullying and harassing behaviour? Or is it a cultural expectation, as is common within autistic cultures if someone is concerned that a point hasn't been understood as yet? Often a simple one to solve, with a query about why it's happening - and a clear guide as to how much is too much. </span></p><p><span style="color: #073763; font-family: arial;">"Being drunk at a meeting". Is that inappropriate conduct? How are we finding out whether they are indeed drunk? There may be definite pieces of evidence, of course - but what if the person has speech apraxia, or other neurological conditions such as a past Stroke that may mean that sometimes - or usually - they may slur their words? For example, when tired or overwhelmed. Often a simple one to solve, with the right gentle enquiries. </span></p><p><span style="color: #073763; font-family: arial;">"Constantly interrupting others". Is that inappropriate conduct? Or is it neurodivergence? For example autistic people use a different signalling system to determine when it is their turn to speak, so there may be genuine misunderstandings and mistimings because of this difference. Often a simple one to solve, if people collaborate to find a good 'Whose turn is it to speak' system for meetings. A raised hand, a signal of some other kind that work, a good Chair who manages the process well.</span></p><p><span style="color: #073763; font-family: arial;">"Insulting behaviour". Is that inappropriate conduct? Or might it be someone with Tourette Syndrome, where occasional tics may - for some - result in some rather lively language or gestures. </span></p><p><span style="color: #073763; font-family: arial;">"Failing to engage". Is that an act of manipulation, or is it driven by neurodivergent bewilderment about process, inaccessible systems, utter exhaustion, etc?</span></p><p><span style="color: #073763; font-family: arial;">"A lack of positive interactions". Is that inappropriate conduct? Or is it a determination to seek social justice and a focus on facts, common in some neurodivergent individuals - and which is perhaps combined with face expressions that do not match the smiling, cheerful disposition often sought by groups. </span></p><p><span style="color: #073763; font-family: arial;">"Aggressive interactions". Is that voice tone knowingly aggressive? It is common for neurodivergent individuals to sound different to 'typical' voices, and to sound cross, dismissive, patronising, 'overly posh', sarcastic etc when there was no such intent. </span></p><p><span style="color: #073763; font-family: arial;">Such matters often require us to consider not just disability and neurodivergence, but also matters of gender & ethnicity, for example. How many women were accused of being 'shrill' and 'hysterical' if they raise concerns? How many Black individuals have a different cultural way of communicating, potentially misunderstood by white groups?</span></p><p><span style="color: #073763; font-family: arial;">Good training is vital.</span></p><p><span style="color: #073763; font-family: arial;">Good collaboration is vital.</span></p><p><span style="color: #073763; font-family: arial;">Reflection on what might lie behind particular situation is paramount, rather than leaping to conclusions.</span></p><p><span style="color: #073763; font-family: arial;">Check your own Codes of Conduct, and make sure that disability and neurodivergence are always included, and always taken into account.</span></p><p><span style="color: #073763; font-family: arial;">Thank you for reading. </span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><br /></p><p><span style="color: #073763; font-family: arial;"><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-65131014437092992782024-01-22T04:01:00.000-08:002024-01-22T04:01:57.155-08:00Why is Brand New ABA still relying on evidence from these methods?<p style="text-align: center;"> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhcgoARBIWWp3L47at1C75oITofHF0mFYmnHmz8Rzgg1fUaJtmRihcLQ5iuwlKwbX2gIxw2W-0UuXQded5J-mFSF2sBv7hUjGbK6nnnYIzuVDwDfRaY1qhkOtuIEJfPNLfA1cK3h2pWESukjZkVMeFcVI_I0u0jaaNeiG5oFny9qRLWRgaP0Wm-87_sVak/s1056/padded%20cell.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A photograph of a padded cell" border="0" data-original-height="582" data-original-width="1056" height="220" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhcgoARBIWWp3L47at1C75oITofHF0mFYmnHmz8Rzgg1fUaJtmRihcLQ5iuwlKwbX2gIxw2W-0UuXQded5J-mFSF2sBv7hUjGbK6nnnYIzuVDwDfRaY1qhkOtuIEJfPNLfA1cK3h2pWESukjZkVMeFcVI_I0u0jaaNeiG5oFny9qRLWRgaP0Wm-87_sVak/w400-h220/padded%20cell.png" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">On social media, I am often told that Applied Behaviour Analysis is now kind, ethical, considers potential harms, and seeks consent or assent from all participants. I am also often told that it does not use punishments on autistic individuals (or indeed other people).</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">Oddly, the evidence doesn't support this positive view.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">Today, for example, this paper appeared in the research journal lists. It's from the Applied Behaviour Analysis (ABA) industry. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/jaba.1054">https://onlinelibrary.wiley.com/doi/abs/10.1002/jaba.1054</a><br /></span></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">In it, the researchers search for good ways to stop 'extinction bursts' from the children. In other words, where a child fights back against the ABA team and continues to do the alleged 'bad behaviour', sometimes getting much worse before the child gives up and complies with the team.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">The team set out a lot of very troubling information.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">The children are as young as three years old.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">There appears to be no mention of the children giving their assent to any of this, or how they would signal a lack of assent.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">There is no discussion of the ethics of what the team is doing.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">There is no mention of considering potential harms or adverse effects from ABA, nor discussion of how the original teams did any follow-up to find out if their alleged treatment 'worked'.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">The 'bad behaviour' included trying to escape from the padded cells (no, you're not imagining this - that's where the 'treatment' takes place). Or, falling on the floor, which could be a form of epilepsy, or a motor co-ordination difficulty, not a behaviour. Or saying anything the team didn't like. Or trying to take items of clothing off, which might be a sensory pain situation for the child. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">We are told that the children had this 'treatment' for 6 hrs a day, 5 days a week, for example.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">The paper makes a lot of mention of punishers given to the children to force compliance from them.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">It's hidden behind a paywall, like most ABA research.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">Now, I am sure there will be some who say, "But Ann, this is based on older research. We don't do this stuff now, honest guv".<br /><br />But, this is brand new research. And, if the ABA industry doesn't do this stuff now, where are the team discussing how they don't do this now? Where is their ethical consideration? Where is their denouncement of the punishers and the padded cell and the endless compliance-training to stop children from trying to escape this (in my view) living nightmare? Where is the consideration of consent/assent and how meaningful it is if a child fighting, trying to escape or shouting is all seen as 'noncompliance' and not as 'a child saying no to this treatment'?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">Is this brand new ABA? Or is this yet another endorsement of the very same ABA it's always been?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">We need to move on from the 1980s. This wasn't fit for purpose then, and it's not fit for purpose now, in my view. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">I'll leave you to have a look at the external research on ABA, which can't even find evidence of it doing anything much to 'improve' the behaviour it sets out to 'improve', except in the very short term when stared at by the compliance team. Plenty in this blog. Plenty on X, where I discuss the ABA findings regularly.<br /><br />If you are in a position to rethink the 'therapy' your child is having, please do. There are better, kinder, modern, collaborative, ethical, consensual approaches that enable real progress. Ask the autistic communities about them. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">Leave this in the past, where it belongs.<br /><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;">Thank you for reading. </span></div><br /><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-35054410969666926022023-12-08T05:04:00.000-08:002023-12-08T05:20:57.229-08:00Time to move on from last century? How to reframe diagnostic criteria for autism?<p> </p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz8jH0TODr7JwwtOfbDOMST5IebiY-cI_QnuQqLqmW7u6UNkAEsDZnLEjKFhfrGWwlIArfOLMn6oL78xruOrobA8XnxiSWDrBYij4HlajmtPtHdvqm93K68v9TOOzIyZ3qBjACHMMWL5cnhOMZMu9SSHrwonLhqls606Tf5hQjc6zFrYy-Xq5e0MTNB744/s641/Diversity%20cardboard%20cutouts.PNG" style="margin-left: auto; margin-right: auto;"><img alt="Silhouettes of the head and shoulders of people, in different colours." border="0" data-original-height="502" data-original-width="641" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz8jH0TODr7JwwtOfbDOMST5IebiY-cI_QnuQqLqmW7u6UNkAEsDZnLEjKFhfrGWwlIArfOLMn6oL78xruOrobA8XnxiSWDrBYij4HlajmtPtHdvqm93K68v9TOOzIyZ3qBjACHMMWL5cnhOMZMu9SSHrwonLhqls606Tf5hQjc6zFrYy-Xq5e0MTNB744/w320-h251/Diversity%20cardboard%20cutouts.PNG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><br /><p><span style="font-family: arial;">The first autism research was arguably carried out nearly 100 years ago, by Grunya Sukhareva (1926). <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5696677/">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5696677/</a> Later, autism was redescribed by others.</span></p><p><span style="font-family: arial;"><br /></span><span style="font-family: arial;">Since then, research teams and publications have often laboriously copied out those initial misunderstandings about autism. They appear in text after text, paper after paper. And, arguably, diagnostic manual after diagnostic manual.</span></p><p><span style="font-family: arial;">Research in the last few years has uncovered a veritable treasure trove of new information about autistic people. About autistic diversity, about strengths as well as areas needing support, about honesty and integrity, and so much more. We know so much more, also, about autistic sensory differences, social communication differences and strengths, and the ways that society benefits from each and every one of us. The field has expanded from a niche medicalised 'disorder' to a wealth and depth of nuanced, thought-provoking information, stretching throughout contributions to arts, philosophies, humanities, literature, faith & spirituality, and so much more. </span></p><p><span style="font-family: arial;">The diagnostic texts continue to lag behind. An example can be found at <a href="https://www.cdc.gov/ncbddd/autism/hcp-dsm.html">https://www.cdc.gov/ncbddd/autism/hcp-dsm.html</a> and shows us as a relentlessly long list of deficits. Not a hint of modern research has touched its pages as yet, it would appear. Nor is there a hint of the contributions that some autistic people have made to our society. In research paper after paper, we appear only as burdens on society, as things to be cured, and sometimes, horrifyingly, as some object that is barely human. What a disaster.</span></p><p><span style="font-family: arial;">So, what would diagnosis look like, if we put in the newer research? I've spent decades amongst so many hundreds and thousands of fantastic autistic people, discussing this. The slides below are informal, based on those many discussions and on the newer research, much of which is linked at <a href="https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html">https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html</a>. The pictures below are ones I use as my own 'thinking points'. But they serve a purpose, as a discussion-point for us all.</span></p><p><span style="font-family: arial;">There's an old saying - that if you keep doing the same thing, and it keeps going wrong, something needs to change. Well, we've spent 100 years breaking too many autistic people with the crushing load of total negativity, every day of their lives. Can we change the narrative and learn to rebuild some lives instead?</span></p><p><span style="font-family: arial;">I put it to the diagnostic communities that they are wise to work collaboratively with autistic people of all kinds, and read the modern research information thoroughly. Especially that which shows so clearly that every autistic person benefits from a more positive, kind, respectful framing of our differences, and our support needs.<br /><br />I'll look forward to discussing things further, on social media elsewhere.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgxaMnnzoRyGc3aYgPU8GUdl1BeDZPfA1pTXLgfQMoZM6csJAHs77C605gWM9sjAGoB2UcrOZ3MQNk9RMYJNU63Rj2HAflApJyl3XBF_tU32k1v9OegRe6Y4j_pq_BfWIQRiG-rCvYwmUTI7h1DES-CGkUEgAoqtlPscdCaUpU5kBGRznCTIFKRP15zmbvi" style="margin-left: 1em; margin-right: 1em;"><img alt="Autistic people must match each of these three areas of social communication difference, and also at least two out of four types of focused behaviour: [not shown on this slide] a) Differences, throughout life, in social communication and social interaction across multiple contexts: Differences in social approaches, often with longer information-giving rather than back-and-forth conversations. Social ‘chit-chat’ is often minimised or absent, to avoid social and sensory overload. Differences in body language, face expression and use of eye contact. Often eye contact is sparse or non-existent, again avoiding social or sensory overload and often enabling better listening. Differences in relationship development, for example commonly enjoying friendship and relationships with some other autistic individuals, but finding it very difficult to adjust to nonautistic ways of expressing friendship and relationships. Misunderstandings from nonautistic indivduals are often common and there may be a long history of experiencing anger or ostracism from others, seemingly for no reason the autistic person can discern." data-original-height="956" data-original-width="1760" height="348" src="https://blogger.googleusercontent.com/img/a/AVvXsEgxaMnnzoRyGc3aYgPU8GUdl1BeDZPfA1pTXLgfQMoZM6csJAHs77C605gWM9sjAGoB2UcrOZ3MQNk9RMYJNU63Rj2HAflApJyl3XBF_tU32k1v9OegRe6Y4j_pq_BfWIQRiG-rCvYwmUTI7h1DES-CGkUEgAoqtlPscdCaUpU5kBGRznCTIFKRP15zmbvi=w640-h348" width="640" /></a></div><br /><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh2WqdZKPw4cQDfDv6ktQcprdUeJiWUzZ5W4qvx0m-u9pD9Qh4UI7WWu1dAPNphg8PCXMoq1FJaHSY_8rryJ8Np0qQGOdM-g7LBq3nKAWQfotvdzxomLeQZQLhw2BPekFfcg1LsrbNSWwxRTurHBUQowTanISbc6yUvDyXZOe081OiDj3sHM5xOvKj_ddOK" style="margin-left: 1em; margin-right: 1em;"><img alt="Autistic people have differences in behaviour, interests and activities. At least two of the following must be matched, to get a diagnosis: Use of movement or sound in repeated ways. This is often used to help regulate and focus. The person may take great joy from pattern, colour, or form, and build their learning about the world from repeated deep study of a particular object or pattern, for example. They may learn spoken language by using words or phrases repeatedly, and use language in ‘short-form’ ways that minimise sensory and social overload for them and for other autistic individuals. They may need deep certainty about forthcoming events, to minimise social and sensory overload and to aid concentration and planning. It can be of great assistance to them to use particular set patterns of eating, or greeting, for example. Sudden change can be overwhelming. Autistic people often have a very deep focus on hobbies or interests, one that can lead to great specialisation and expertise for some. This may be lead to areas of expertise that are uncommon in the wider population, or to a greater sense of relaxation and joy. They may have sensory processing differences that impact on everyday life, or which provide particular comfort and quality of life. There may be either hyporeactivity or hyperreactivity to e.g. pain, temperature, sound, texture, lighting types, smells or tastes, often sensing things imperceptible to nonautistic individuals." data-original-height="1124" data-original-width="2048" height="352" src="https://blogger.googleusercontent.com/img/a/AVvXsEh2WqdZKPw4cQDfDv6ktQcprdUeJiWUzZ5W4qvx0m-u9pD9Qh4UI7WWu1dAPNphg8PCXMoq1FJaHSY_8rryJ8Np0qQGOdM-g7LBq3nKAWQfotvdzxomLeQZQLhw2BPekFfcg1LsrbNSWwxRTurHBUQowTanISbc6yUvDyXZOe081OiDj3sHM5xOvKj_ddOK=w640-h352" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><br /><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-39308978764920059102023-07-31T07:38:00.001-07:002023-07-31T07:40:07.903-07:00When almost all movement or sound is called 'Challenging Behaviour' if you're autistic<p style="text-align: center;"> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpEKxF15PkTvUku6WtG6Mh5W4gJyWUwF7HqXAwK2uihrVfCaH24iam5fRolray0e-rCDe6lshLo4-hrtbpblNXoYTuF14OElrMWTScfVVaqgQ5aw7kSHDCpzEFdoa7g-m6amnuHgLGhinrh6sf1oie7MqZ3o9EzHymuKSGeuiGYL0lRKypbDkUUKEJPnJo/s958/looking%20into%20distance.png" style="margin-left: 1em; margin-right: 1em;"><img alt="A person wearing a t shirt and shorts, standing on a stone pier, looking out over a lake towards mountains" border="0" data-original-height="618" data-original-width="958" height="206" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpEKxF15PkTvUku6WtG6Mh5W4gJyWUwF7HqXAwK2uihrVfCaH24iam5fRolray0e-rCDe6lshLo4-hrtbpblNXoYTuF14OElrMWTScfVVaqgQ5aw7kSHDCpzEFdoa7g-m6amnuHgLGhinrh6sf1oie7MqZ3o9EzHymuKSGeuiGYL0lRKypbDkUUKEJPnJo/w320-h206/looking%20into%20distance.png" width="320" /></a></div><br /><p></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">In some of my roles for organisations, I'm commissioned to review research papers about autistic people.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">Some of the findings are startling, and not always in a good way.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">In recent days, one paper in particular got my attention. The researchers wanted to know if 'challenging behaviour', or 'problem behaviour' as it is sometimes known, increased or decreased with age, for autistic people. </span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">So, they looked at all sorts of studies that had been done on this.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">Hardly any of them had considered autistic adults. The assumption in nearly every one of them was that all autistic people are children. So, nearly every measure of how 'challenging' autistic people are was done on children, not on adults.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">They linked to a small number of papers that assessed adults. Most were from years ago, out of date. One was at least fairly recent, dating from 2016. It was indeed looking at 'behaviour' of some autistic adults. It used a scale that was invented in 1996, not far off 25 years ago. The scale is called the SIB-R, although other out-of-date scales are available.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">I began looking at the measures in that scale. Remember, readers, these are for autistic adults, not toddlers or primary school children. Here's some of the measures, which I shall put into everyday words:</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">Being too clingy.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">Not doing as we are told.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">Complaining.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">Laughing without a good enough reason.</span></p><p><span style="color: #073763; font-family: arial;">Crying without a good enough reason.</span></p><p><span style="color: #073763; font-family: arial;">Interrupting without permission.</span></p><p><span style="color: #073763; font-family: arial;">Rocking (in other words, normal autistic stimming)</span></p><p><span style="color: #073763; font-family: arial;">Twirling their fingers (in other words, normally autistic stimming)</span></p><p><span style="color: #073763; font-family: arial;">Talking to themselves.</span></p><p><span style="color: #073763; font-family: arial;">Eating too much or too little.</span></p><p><span style="color: #073763; font-family: arial;">Staring into space. The person in the photo at the top of the page is staring into space. Deeply challenging, eh?...</span></p><p><span style="color: #073763; font-family: arial;"></span></p><p><span style="color: #073763; font-family: arial;">Being too worried.</span></p><p><span style="color: #073763; font-family: arial;">Being sad.</span></p><p><span style="color: #073763; font-family: arial;">Not able to concentrate.</span></p><p><span style="color: #073763; font-family: arial;">Sleeping too much.</span></p><p><span style="color: #073763; font-family: arial;">Being negative about themselves.</span></p><p><span style="color: #073763; font-family: arial;">Standing too close to someone.</span></p><p><span style="color: #073763; font-family: arial;">Talking what someone else feels is nonsense.</span></p><p><span style="color: #073763; font-family: arial;">Burping.</span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;">Well, it's all enough to give anyone indigestion, in my view. </span></p><p><span style="color: #073763; font-family: arial;">In fact, the autistic adults can score pretty highly for 'challenging behaviour' from being able to tick off things on this list. And teams are able to tell others that the autistic adults are in need of serious interventions and major treatments for their 'challenging behaviour' based on these sorts of humiliating, inappropriate, appalling lists.</span></p><p><span style="color: #073763; font-family: arial;">What on earth is going on?</span></p><p><span style="color: #073763; font-family: arial;">How is research still using any such measure, bringing it constantly back to the present day as if it is in some way meaningful as a gauge of our fellow human beings, behaving in perfectly ordinary human ways. Or, behaving in ways that fully respect their autistic neurology and needs?</span></p><p><span style="color: #073763; font-family: arial;">Are we servants, doing the bidding of nonautistic people, or adults with every right to our own autonomy, our own right to say 'no' and mean 'no'? Whose power-trip is the above list, eh?</span></p><p><span style="color: #073763; font-family: arial;">We have a duty and a responsibility to review past out-of-date questionnaires, and to refuse to base our knowledge of autistic people on meaningless measures, designed decades ago for children.</span></p><p><span style="color: #073763; font-family: arial;">Work with autistic people to design meaningful measures of 'behaviour. Measures that include distress, exhaustion, pain, trauma and other very real scenarios in too many autistic lives. Measures that lead to greater understanding of the 'why' of why someone may do something more drastic, for example.</span></p><p><span style="color: #073763; font-family: arial;">Too much of what passes for fact about autistic lives turns out to be based on stuff that was only true for toddlers, or on measures that are so out of date they should be binned. </span></p><p><span style="color: #073763; font-family: arial;">No wonder we make so little progress in creating quality of life for the lovely autistic people in society, eh?</span></p><p><span style="color: #073763; font-family: arial;">Thank you for reading. </span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></p><p style="text-align: left;"><br /></p><p style="text-align: left;"><br /></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-68820472623358366342023-06-24T00:53:00.001-07:002023-06-24T00:55:34.094-07:00"I don't like your tone"<p style="text-align: center;"> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIQYDBHNI8Mkm5QsMAZUbrac13AabtYwIjVE9KE_NrDGvrN_o_hvLPvkyKjohdyPRrw5SZFD6D1VMDV9bsJefGubeEgHFAHvIPG35_230yp6BpWmQCJY2dnVHwFhB2noIP38sziD96c9QZ6K10xSRbmuEcH6Num9dgCSjp45z8c3u-6kmKrnMjpvZneoio/s381/deviant%20gaze%202%20angry%20woman%20glasses.JPG" style="margin-left: 1em; margin-right: 1em;"><img alt="A photo of a blonde woman staring angrily over her spectacles" border="0" data-original-height="249" data-original-width="381" height="209" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIQYDBHNI8Mkm5QsMAZUbrac13AabtYwIjVE9KE_NrDGvrN_o_hvLPvkyKjohdyPRrw5SZFD6D1VMDV9bsJefGubeEgHFAHvIPG35_230yp6BpWmQCJY2dnVHwFhB2noIP38sziD96c9QZ6K10xSRbmuEcH6Num9dgCSjp45z8c3u-6kmKrnMjpvZneoio/w320-h209/deviant%20gaze%202%20angry%20woman%20glasses.JPG" width="320" /></a></div><br /><p></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">Decades of life as an autistic person, living amongst hundreds of other lovely autistic people, has given me some insights. One of these is how often many autistic people get told, "I don't like your tone" or "Why are you so angry" or "There's no need to be sarcastic", or similar. But, they weren't feeling anything negative at the time. They had no intention of saying anything negative. Somehow, many nonautistic people hear negativity/anger/sarcasm in autistic voice tones...or in our writing...when that's not what we meant. At all.</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">What's going on, eh? Is this really common?</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">I did an informal Twitter poll. Here's the results.<br /><br /><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUHDmY2yEnM0qpp0jzs6F5eN7ivKH5cE80URjsflaZ6CEQTJCPV_zYFXIQ8MsnIe6deld7dm_kbyyslLIuzoCGm19ot-uANNw6btzYdN5NuADlBBuRph96lGl9xXPPKhnp4LoOZJOOgLKIvwvnI_d-w6sVzvJofPTtaqbkleZSMUUYh6JOwCd6rePIsOqI/s1110/poll%20voice%20tone%20angry%20sarcastic%202023.png" style="margin-left: 1em; margin-right: 1em;"><img alt="A poll result, described in the text" border="0" data-original-height="784" data-original-width="1110" height="283" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUHDmY2yEnM0qpp0jzs6F5eN7ivKH5cE80URjsflaZ6CEQTJCPV_zYFXIQ8MsnIe6deld7dm_kbyyslLIuzoCGm19ot-uANNw6btzYdN5NuADlBBuRph96lGl9xXPPKhnp4LoOZJOOgLKIvwvnI_d-w6sVzvJofPTtaqbkleZSMUUYh6JOwCd6rePIsOqI/w400-h283/poll%20voice%20tone%20angry%20sarcastic%202023.png" width="400" /></a></div><br /><p></p><p style="text-align: left;"><span style="font-family: arial;">We had nearly 5,000 people taking part. I asked them if they had ever been accused of being angry/aggressive /a bully/sarcastic, because of their voice tone, but they hadn't intended it to sound that way. The vast majority said yes. There was quite a discussion on the post also, with many saying it happens to them very often. Some related disastrous consequences from some people mistaking their tone or style of writing for rudeness.</span></p><p style="text-align: left;"><span style="font-family: arial;">The thing is, autistic people communicate in a genuinely different way. There's plenty of research on this. For example:</span></p><p style="text-align: left;"><span style="font-family: arial;"><a href="http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html">http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html</a> allows you to search through for a lot of it. </span></p><p style="text-align: left;"><span style="font-family: arial;">Ours is often a very direct, clear style. We often use shortened sentences, or go straight into a topic.</span></p><p style="text-align: left;"><span style="font-family: arial;">But it's more than that. Our actual voice tone, if using mouth-words, can be very different. We might sound pedantic, or angry, or dismissive, etc - but these are often features of how our vocal cords and mouths are producing language. Autistic people have genuinely difficulties with 'motor co-ordination' (in other words, getting our muscles to work well to get a result), and voice tone can be one of the things that's affected.</span></p><p style="text-align: left;"><span style="font-family: arial;">It's so important that people know this.</span></p><p style="text-align: left;"><span style="font-family: arial;">So many autistic people find themselves in situations where those around us truly believe we're angry, nasty sorts, because they are 'misreading' a genuine difference in how we sound...or maybe how we write. Some are blamed for brain events where they may produce a seeming display of anger ('meltdowns'). It happens after e.g. extreme sensory/social overload for some autistic people. But, people often think it's a deliberate display of nastiness. Some also have Tourette's Syndrome, and some within that group have vocal 'tics' that involve rather lively language. Again, that's not a deliberate choice of words.</span></p><p style="text-align: left;"><span style="font-family: arial;">It's vital that society reflects carefully on what it thinks it knows about us, and how it treats us. Check what we meant, before reaching a conclusion of nastiness, please.</span></p><p style="text-align: left;"><span style="font-family: arial;">As research shows, autistic people are honest individuals who often have a deep caring about others and the world around us, and a deep desire to see justice and fairness. Relax about our alleged 'tone of voice', and you're better placed to get to know us as friends and colleagues. If you're worried about 'tone', say so. We're usually very concerned to have accidentally given people a cause to worry, and often pleased to be able to find a solution together.</span></p><p style="text-align: left;"><span style="font-family: arial;">Thank you for reading. </span></p><p style="text-align: left;"><br /></p><p style="text-align: left;"><span style="font-family: arial;"><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-48743990292577027042023-02-19T03:42:00.002-08:002023-02-19T03:57:05.989-08:00Autistic Distress: Shutdown, Meltdown, Media and Public Knowledge<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxb1e6HEhXJFqKK0PAU08ZdqVzdsXXzXqxyvEn4-DiTmN5Xe_FLO2yCxZQRgcXKBnzt63csVeoxRORIPnls-3YSczqDA1rdqVCpAvQwmqG1WVI_vS7UWz7SRsxs4MsHcW1muQzd0HArl2pG2inmne06WrbUmlWyFqEMAWk6Buo588o5GyxlgyyFZQOCA/s406/stunned%20woman%20laptop.JPG" style="margin-left: 1em; margin-right: 1em;"><img alt="A photo of a woman with long dark hair, sitting at a desk on which there is an open laptop. She has her hands covering her face. In the background, various line drawings." border="0" data-original-height="269" data-original-width="406" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxb1e6HEhXJFqKK0PAU08ZdqVzdsXXzXqxyvEn4-DiTmN5Xe_FLO2yCxZQRgcXKBnzt63csVeoxRORIPnls-3YSczqDA1rdqVCpAvQwmqG1WVI_vS7UWz7SRsxs4MsHcW1muQzd0HArl2pG2inmne06WrbUmlWyFqEMAWk6Buo588o5GyxlgyyFZQOCA/w320-h212/stunned%20woman%20laptop.JPG" width="320" /></a></div><br /><p></p><p><span style="color: #073763; font-family: arial;">Too many autistic people are asked to live unbearable lives.</span></p><p><span style="color: #073763; font-family: arial;">Now deafened and blinded by sensory overwhelm in the world, so many are forced through one painful, exhausting day after another. Society's misunderstandings and the lack of balance in some media mean that they are also at huge risk of experiencing exclusion, bullying and violence. The research is shocking stuff. Actually, that statement is true in another sense - a lot of research on autistic people has indeed been shocking in the way it was conducted, with little to no consideration of whether research teams were harming autistic people. See <a href="http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html">http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html</a> for a useful starting point for some of the best, and worst, of autism research. Do brace yourselves.</span></p><p><span style="color: #073763; font-family: arial;">Understandably, brains can only handle so much. There's a point where they can't take any more. When that happens, the autistic person's distress levels reach a point where one of several things may happen. In my daily work, I train on autistic meltdown and shutdown, amongst other states of distress, and these feature in the publications I have co-authored with many others. As an autistic professional, I can also speak from my own set of experiences, and as a parent and carer, from wider experiences within the family. Note that many autistic people are as yet undiscovered, possibly because their lives are doable enough that they have few or any of these, and therefore don't get diagnosed, or even recognised as autistic.</span></p><p><span style="color: #073763; font-family: arial;">Shutdown - the autistic person may enter a state that looks maybe like that photo above. Quiet, distressed, almost unable to move or speak. This is very common, and many autistic people only, or nearly always, experience this as the distress mechanism.</span></p><p><span style="color: #073763; font-family: arial;">Flight - they may run away from the distress.</span></p><p><span style="color: #073763; font-family: arial;">Flop - they may collapse on the floor.</span></p><p><span style="color: #073763; font-family: arial;">Fright - they may enter a state of unimaginable anxiety and panic.</span></p><p><span style="color: #073763; font-family: arial;">Meltdown - they may enter a state where they seem angry and as if they are being deliberately violent. </span><span style="color: #073763; font-family: arial;">Like the other states of overwhelm, this is a brain response to being totally, utterly overloaded and exhausted beyond measure. Possibly, from good research, in terrible untreated physical pain from healthcare situations. It is not a choice of anger to get their own way, or because they don't care what happens to other people, or because they want to spoil the fun of others. </span></p><p><span style="color: #073763; font-family: arial;">Notice how many descriptions of brain responses there are.<br /><br />Would you expect the media, e.g. fairly serious newspapers that influence financial decision-makers, to put in a selection of personal accounts reflecting each of these? I would.</span></p><p><span style="color: #073763; font-family: arial;">Do they?<br /><br />No, it appears that they don't.<br /><br />I did a quick survey of two of the papers in the UK. Serious ones. I won't name them, as it's not a critique of them in particular.</span></p><p><span style="color: #073763; font-family: arial;">Paper 1: 60 mentions of autism, ever. Fair enough. A few since early 2021. But of any of those 60, only 3 mentioned shutdown, for example. None with any explanation. Article after article on meltdown. I'll be clear again - those personal accounts are important and yes, they absolutely should be heard.</span></p><p><span style="color: #073763; font-family: arial;">Paper 2: Since early 2021, 9 articles mentioning autism. Autistic children as a 'pain in the arse', as the spoilers of holidays and parties, as the bringers of violence. Only one article mentioned shutdown, and that only in passing with no explanation. </span></p><p><span style="color: #073763; font-family: arial;">None seemed to focus on e.g. autistic people with a learning disability, or autistic people who are nonspeaking. None seemed to focus on giving people links to useful materials, other than an occasional book on children that featured the words meltdowns and hitting in their opening explanations.</span></p><p><span style="color: #073763; font-family: arial;">If you were a financial decision-maker, reading those papers as your daily source of information on autistic people, how balanced a view are you getting? How easy would it be for your Accountant or Solicitor, your Chartered Surveyor or Doctor, your neighbour or friend, to disclose to you their diagnosis or identity as autistic, if that's all you knew, from the Press? Would you know how to support them and be an ally? </span></p><p><span style="color: #073763; font-family: arial;">I'm grateful to every person who makes themselves vulnerable by putting their personal stories in the Press, in an important effort to educate people and create a better end result. It is vital that we hear each person, and respect fully their set of personal experiences.</span></p><p><span style="color: #073763; font-family: arial;">It is also vital that we hear and see so much more about the other states that affect autistic people, especially when those are situations that might be the majority.</span></p><p><span style="color: #073763; font-family: arial;">Recently, very glad for example to see the documentary by Chris Packham on BBC2, Inside Our Autistic Mind, which featured a woman who goes into shutdown, and a man who is non-speaking. That wider range of voices (spoken, assistive communication or otherwise) is what we need.</span></p><p><span style="color: #073763; font-family: arial;">It's all very well for society to keep saying, "If you've met one autistic person, you've met one autistic person". But, we need to move away from the single stereotype of autism = meltdown, please. We need a world that is a safer, kinder place for all of us - and one where autistic distress, overwhelm & pain are understood in all their presentations, and responded to with kindness & the right support.</span></p><p><span style="color: #073763; font-family: arial;">Thank you for reading.</span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-83076638324740140462023-02-04T07:59:00.002-08:002023-02-04T08:00:06.825-08:00Who Are Autism Conferences For? <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTYuN8iDcYPqyDVqLIHFvRHBAZSeqlPGbr_be6FMn_GteqFr9Pj5pZG_ihio8jkWLM7QGlqNsQ6ggZICw2m8lTimJWe2y8YKZB6ghUrgzCArqrQuHE4lKokzEwIZKtHa5aQ4-_N6qlHvuT8Plu280wv1HspSIzqYXds6RBL0fW7wMqpTfmUjq86fz4-Q/s1042/autism%20conference%20clipart.png" style="margin-left: 1em; margin-right: 1em;"><img alt="Clipart of a conference speaker standing at a podium, in front of seated conference attendees" border="0" data-original-height="610" data-original-width="1042" height="234" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTYuN8iDcYPqyDVqLIHFvRHBAZSeqlPGbr_be6FMn_GteqFr9Pj5pZG_ihio8jkWLM7QGlqNsQ6ggZICw2m8lTimJWe2y8YKZB6ghUrgzCArqrQuHE4lKokzEwIZKtHa5aQ4-_N6qlHvuT8Plu280wv1HspSIzqYXds6RBL0fW7wMqpTfmUjq86fz4-Q/w400-h234/autism%20conference%20clipart.png" width="400" /></a></div><br /><p></p><p><span style="color: #073763; font-family: arial;">In a recent autism news article, an academic is reported to have said that autism researchers at a conference were very relieved that few autistic advocates were at the event. Apparently, the nonautistic researchers were comforted to know that if they said derogatory things about autistic people, they wouldn't be facing serious consequences. </span></p><p><span style="color: #073763; font-family: arial;">It led to me asking autistic people about their experiences at autism conferences, in an informal poll.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghg3nx7QuKgTuUxwvhTyHqzSzGCx03MbmFxHgMIs0Dtx5mRDZaWfo9nVPGxzfQqYc3X99oW6gZ2w5d9JxzAqkKDy0hH-oaL17wsAzzrLkhjZHBdP7o2BD9xi7_Mj_aZpemKBD1c5DKAuY1YHT3m6kdjh7txLFg6YhxLQd_wrLvAnfrFpr2_Xo6Te8Diw/s1204/poll%20autism%20conference%20attendance%20welcome.png" style="margin-left: 1em; margin-right: 1em;"><img alt="The poll result which is discussed in the text" border="0" data-original-height="704" data-original-width="1204" height="234" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghg3nx7QuKgTuUxwvhTyHqzSzGCx03MbmFxHgMIs0Dtx5mRDZaWfo9nVPGxzfQqYc3X99oW6gZ2w5d9JxzAqkKDy0hH-oaL17wsAzzrLkhjZHBdP7o2BD9xi7_Mj_aZpemKBD1c5DKAuY1YHT3m6kdjh7txLFg6YhxLQd_wrLvAnfrFpr2_Xo6Te8Diw/w400-h234/poll%20autism%20conference%20attendance%20welcome.png" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">This is the result.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">Of the autistic people who saw the informal poll on my page, only a quarter said they generally felt welcome and included at autism conferences.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">It gives us some questions, doesn't it.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">If it is in any way representative of autistic conference attendees/speakers generally, what might that say about autism conferences?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">Who are the conferences for?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">I've been to a few good ones, for sure. I am thankful for allies and autistic teams who work hard and tirelessly to get things as right as possible. People who include proper information at the start. People who put up good, thoughtful access statements, working with autistic specialists. People who are aware of the need to communicate in writing, sign and speech, etc. People who think about quiet rooms, and clear information on the day. About pacing and how to feed back in ways that allow for thought. People who understand intersectionality and are aware how many autistic people also have other neurodiversities, disabilities or situations in life that means trekking endless miles and paying £500+ to attend is totally beyond their reach.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">I looked at some of the recent research on autistic people (2022) from people who speak at conferences. Too much of it was filled with dehumanising language. Autistic people, including of course our research colleagues, are described variously as disordered, deficient, as having 'aberrant' brain connections. The narrative was endless. The research teams wanted cures for our 'behaviour' and treatments for our 'restricted interests'. Genetic alterations were suggested to make us the sort of people they assumed we wanted to be, without asking us.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">Are conferences for nonautistic researchers, so they can continue to describe our loved autistic people in too-often negative terms, unbothered by challenge from those who have to live with the consequences? Those who have to face employers who are told we are Deficient and Disordered? Those who face having their children taken away from them if they dare disclose that they are an autistic parent? Those who face a life of fairly continual discrimination from a society fed this story about us, without us? Those who are fellow researchers, afraid to ever say they are autistic, because of the stigma?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">There are very good research challenges to that negativity. Teams of autistic people and allies who are pushing hard against 'deficiency' narratives. Teams who are pointing to the growing research focusing on a more balanced and fair set of perspectives. Teams upholding the voices of autistic people of all kinds and all backgrounds, who want to be heard. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">Autistic people don't want to be outside, being given an update on which awful words were used to describe us in the halls of power. Waiting to find out what fate our alleged superiors have in store for us.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">These are our lives. Our families. Our futures.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">It's not good enough that only a quarter of autistic people in this survey felt welcomed and included in the very conferences alleging to make a difference to our lives.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">We must do better.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">Thank you for reading.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><br /><span style="color: #073763; font-family: arial;"><br /></span><p></p><p><span style="color: #073763; font-family: arial;"><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-2396508249068311762023-01-28T03:18:00.007-08:002023-01-28T03:26:17.849-08:00On love, in the face of fear<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEBsbq1GZp_GW99uhCdDTv9dmcT3bo21XSqrwTvtyJ3cPRWusCgt6aXa_zkNrZZS9tyn7UM04Gc9IwatjTqAiimhqUyZ9hIQElFvxt_cvUtt2TLUkpTRhdMvptr2L7xBlC2ziF_P4d2f1gKmK5RFcRupO9f_jfogp1Ztzw_0ibq-jBZ6MFetN-d4rmIw/s1480/umbrella%20rainbow%20parched%20ground%20izrua.png" style="margin-left: 1em; margin-right: 1em;"><img alt="A rainbow coloured umbrella sitting upon parched cracked dark soil" border="0" data-original-height="946" data-original-width="1480" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEBsbq1GZp_GW99uhCdDTv9dmcT3bo21XSqrwTvtyJ3cPRWusCgt6aXa_zkNrZZS9tyn7UM04Gc9IwatjTqAiimhqUyZ9hIQElFvxt_cvUtt2TLUkpTRhdMvptr2L7xBlC2ziF_P4d2f1gKmK5RFcRupO9f_jfogp1Ztzw_0ibq-jBZ6MFetN-d4rmIw/w400-h256/umbrella%20rainbow%20parched%20ground%20izrua.png" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">In recent days, the autistic communities have sat in shock or bemusement at an article which was written about some of us. Me included. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">It is not clear what the author was trying to achieve. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">What it did achieve is an outpouring of love and concern, from so many in the autistic communities. Yes, certainly some shock and anger also. So many rallied round those who had been mentioned in the article, to offer their encouragement, support and affirmation. So many others sat in small groups, holding one another close and letting tears of dismay fall.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">The odd thing, amongst it all, is that the author who had penned those words has a long track history of supporting - and writing about - minorities. About how important it is to encourage and uphold them. About how important it is to include and listen to them. About how vital it is to benefit from their experiences.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">And yet, somehow, that journalist hasn't yet made that next step of understanding. That autistic people are also a minority. That we are also in need of encouragement and support. That we are also human beings, able to express pain and shock, fear and dismay. That sometimes the impact of oppression is the creation of anger against injustice - and yes, it can be hard to hear that pain, pain that comes from a lifetime of oppression. Being clear straight away that I do not condone any illegal action or any action that breaks the rules of social media. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Good journalism is about being inquisitive, something that the author has shown in good measure in previous articles.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">It's about thinking, "What was it like for that person, to live that life? What is it like now, to experience what they experience in their lives from those with power and prestige?" It's about that painful opening of memoirs, notes, letters, blogs, books. It's about listening and hearing beyond any temptation to think, "It sounds like they are being rude for no reason - I shall not listen".</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Hearing pain...listening and loving....that takes courage. And goodness me I see acts of courage around me so often in the world we inhabit. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Autistic people are Mums, and Dads. They are neighbours and friends. They are colleagues and companions. They are faith leaders and artists, musicians and philosophers. So many hiding, because of the cruel narratives out there - because of the power that others have to harm them if they disclose. It's why I have been pleased to work with so many kind and generous allies who have laid down that power and control, and who have wanted to listen to a wide variety of autistic people. It's why I have spent a lifetime working thoughtfully for social justice in various ways, for various groups, including those needing safe spaces in Refuges. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">I encourage good critique of potentially damaging materials within my role in the Critical Autism Studies academic work I do. A reality we know from good research is that so many autistic people lead lives filled with ostracism, hate and violence from others. So many have diagnosable levels of trauma as a result - another reason why the assumption that we have equal power in discussions needs testing and challenging. It is so important to challenge narratives that portray people as less than human, perhaps - or as people who are nothing but a burden, a disease, a deficit.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Autistic people are often also part of the LGBTQ+ communities, often part of the Black and Asian communities and other minority ethnic groups. Many are living in poverty, and in lifelong physical pain, anxiety or depression, because of the challenges society places in their path. Many are women who experience all of the targeting and marginalisation that so many other women experience in society. This intersectionality makes life harder, and harder, for many - because of the multiple layers of misunderstanding or hate that may be found, from some. Autistic people are of every age, and the older ones amongst us are facing a fairly bleak future because of society failing to even realise most of us existed, let alone make retirement doable for us. Those of us who also act as carers for family members are left wondering what on earth the future holds.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Autistic people may sometimes be erased from opportunities to contribute, made out to be either too incompetent to listen to, <u>or</u> too competent to listen to (go figure...). The standard routes of being heard are often closed to us, and usually any passing nonautistic person is believed to be more expert in autism than any of us who have lived it and studied it academically for many years. Some give freely of their time to news outlets, and then have their words misportrayed or altered to fit whatever negative narrative those in power want the public to think. It's awful. It's why so many use whatever social media they can manage, to try to be heard. Even that is frowned upon. How much erasure is too much, eh?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Our loved community members may also have intellectual disability, communication needs, epilepsy, pain conditions etc - but are so often left out of discussions on what really matters to them, what really improves their quality of life. Very glad of the big survey and new research trying to put this right. Their input matters.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Every autistic person is a person of full worth, fully needing their human rights, fully needing their voice to be heard....and their pain to be heard.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">I hope, and pray, for myself and our lovely family. For our friends and allies, our colleagues and acquaintances across the autistic communities and the wider neurodiversity, disability, and other marginalised communities. For a life where we can put our proverbial arms around each other - and around others we love - and know love, peace & happiness at last. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Until then, we keep hoping..and praying..and walking alongside one another through the fires of hell that some in society have placed in our paths. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Perhaps one day society will stop lighting those fires, eh?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /><br /><br /><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"> <br /><br /><br /></span></div><br /><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-89167695343344923072023-01-22T09:44:00.000-08:002023-01-22T09:44:05.774-08:00Ethics and Autism: Rights and Responsibilities within Applied Behaviour Analysis - Research by Ann Memmott PgC MA<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKXGliKsq72JtemtZfC84Cxj5XI62XPe40s7dO_b_H4628cxm4mc3EpC3cigmb-vPZ8YDdviT1QNMZcMARasUeRB5PK4te3GCfIBMLG4Fk1Lrfl60aAro7aHPcDrOWZ17gOzkyMNWuY5j65oAFTyX2GBUYcZSWIfvABQXcaEjzYHC-JRweYPytWnYZ8g/s1596/child%20ABA%20hands.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="An illustration of a child with their hair in a pony tail, wearing a blue dress. Their wrist is being held by an adult hand. Other adult hands point to them, etc. Illustration inspired by work of Meredith Ultra, from Wikimedia. Creative Commons Licence." border="0" data-original-height="1062" data-original-width="1596" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKXGliKsq72JtemtZfC84Cxj5XI62XPe40s7dO_b_H4628cxm4mc3EpC3cigmb-vPZ8YDdviT1QNMZcMARasUeRB5PK4te3GCfIBMLG4Fk1Lrfl60aAro7aHPcDrOWZ17gOzkyMNWuY5j65oAFTyX2GBUYcZSWIfvABQXcaEjzYHC-JRweYPytWnYZ8g/w320-h213/child%20ABA%20hands.png" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><b>Ethics and Autism: Rights and Responsibilities within Applied Behaviour Analysis. Ann Memmott, 2022. </b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">My name is Ann Memmott, and I am an independent researcher. In 2022 I completed a piece of research for my Master's Degree Dissertation, through Sheffield Hallam University. My grateful thanks to Dr Luke Beardon and many of the other Tutors and students, family and friends who guided and encouraged me. My thanks also to my wise friend, Dr Dinah Murray, whose death in 2021 has left so many of us missing her presence, but glad of all she contributed to this field. My thanks also to the University for giving me an award for this piece of work, which was of course properly evaluated by internal and external teams & given ethical consent.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">This blog is a short and informal introduction to what I did, and what I found. It is meant for the autistic community, since one of my goals is for all autism research to be for our communities, and co-owned by our communities. The blog does not include all of the material and is not meant to be a comprehensive summary of all of the findings.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">The full paper will be published elsewhere in months ahead. This summary of the work is copyright of the author, Ann Memmott.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">I will start with a <b>content warning</b>. This was a tough Dissertation. Some of what I found was harrowing to read, and as harrowing to write about. A little of the findings appears here. But, it was important as a set of early findings. It is my hope that when fully published, it will allow other researchers to explore more, and to ask good questions about the training that teams get, and what they end up believing about autistic children and young people.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><b>Why did I study this?</b></span></div><p></p><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">The Applied Behaviour Analysis (ABA) industry claims to be a gold-standard approach to improving the lives of autistic individuals and their families. It uses reinforcement to make a child do, or not do, particular things. I won't go into detail on what ABA is, here. Any internet search for 'What is ABA' may give hundreds of ABA industry descriptions. <a href="https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/">https://www.spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/</a> may be useful as a starting point for a critical look at some of its approaches and claims. </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Logically, a gold-standard approach would think deeply about ethics, and would make sure its staff were properly trained on ethics and Human Rights. So, I wanted to do a test of easily-findable recent training materials and research from and for the ABA industry. I had questions, when I started out. Examples:</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Did they explain to their teams what autism is? </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"> </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Would they have good comments on ethics, and on Human Rights? Would it look at whether e.g. children were harmed during ABA (adverse effects, etc)? </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Would it encourage lots of thinking about consent/assent from the autistic children, to make sure this was something they wanted - and would teams be trained to let them say or signal no, if they wanted it to stop? </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Did the ABA industry have a lot of openly autistic people writing and developing these materials? Logically they would do, as this would help make sure the ABA was what the autistic people actually wanted. It would also help to ensure good power-sharing.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Anyone who follows me on social media knows that I have concerns about ABA, having worked within and alongside the ABA industry for a few years. So I was very careful to be open about that, and to make sure that I was reporting as accurately as possible. I really do want other teams to challenge the Dissertation paper academically and see if they agree with it, based on the same sort of stuff I did. That's what research is about.<br /><br />I was expecting to find a reasonable amount of evidence that said yes, our ABA teams have the right training for all of this. </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">University work uses a lot of different ways to look at stuff. Mine used a "Critical integrative review". In other words, I wanted to look at a variety of different materials. Videos, ethics guidance papers, academic papers found in the top journal for ABA teams, and books aimed at teaching ABA teams about ABA. I wanted to make it easy for other teams to do the same sort of research, so I carefully explained how I did each stage. I also did a 'literature review', looking at a huge variety of different papers and materials that had already been written on these subjects. I thought about whether the ABA industry was properly sharing power and control with autistic people.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">I was clear that this was never going to find every single piece of writing and every single video, for my own study. I wanted to see how easy it was for e.g. a new ABA team member to find the right up to date training, so I used simple internet searches, and picked the most popular and recent items to look at. In the Journal, I picked a standard number of papers, to try to make it as fair as possible. It took months to read and research these example more modern materials. The University team ensured students approached all of this in the best possible academic ways.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><b><br /></b></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><b>What did I find?</b></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Well, most of it wasn't what I was expecting to find. I really was expecting to find a reasonable amount of ethical discussion, and a reasonable amount of people now writing about human rights, etc. The ABA field makes a lot of claims to be improving fast. It was reasonable to expect evidence of this in recent journals, books etc. </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">But, the results were in:<br /><br />Very little sign of anyone asking autistic people or working with autistic people.<br /><br />Very little evidence of anyone thinking about what autistic people actually want from ABA.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Very little evidence of people writing about the ethical treatment of autistic people, e.g. minimising harm, ensuring consent, checking for any harms afterwards etc.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Very little evidence of anyone even talking about Human Rights, apart from occasionally suggesting that autistic people had a human right to have ABA done to them.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">I began looking at the journal papers that showed the experiments and research done on autistic children and young people. I had picked e.g. the first bit of research after pages 300, 900, </span><span style="color: #073763; font-family: arial;">1500 and 2100 in particular journal issues for a year. I wanted to make sure I was picking as fairly as possible.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">The evidence in the papers pointed to routine use of punishment, and use of coercive or restrictive practice to achieve results. Often, the child's parents were also used as ABA enforcers at home. </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">I won't give every example, here, but these might give an idea of what was discovered:</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">A paper which considered how to coerce three children into doing things. A child’s distress, avoidance or noncompliance was described as problem behaviour on 156 occasions in the paper. Autism is described as a disorder. There is no mention of consent/assent, nor ethical considerations or approval. The target ‘problem behaviours’ included having difficulties with removing rubbish from the house, brushing teeth or stacking cups. Stimming, (repetitive movement or sound) and which is a vital part of most autistic lives, is described as a problem behaviour. The children were not permitted to escape during the testing. If the children did not comply, the team turned away from them, thus using ‘planned ignoring’, and removed the materials the child wanted. One should note the concerns of many child specialists around the damage that may be done by this planned ignoring. It may make it more difficult for a child to form secure attachments to those around them. </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Another paper analysed the toileting behaviour of ten autistic individuals aged between 2 and 13. They had to sit on a toilet for a set amount of time, at set intervals. The individuals were watched throughout this process, sometimes by two adult observers in the cubicle with them. A successful urination or bowel movement resulted in access to a favourite item. There is no mention of ethics, consent/assent, potential adverse effects from the intervention, potential long term harms or human rights. Sensory or developmental reasons for difficulties with continence are not discussed. The privacy of individuals was only discussed briefly in the context of a second observer in the cubicle. There was discussion of whether leaving an individual in soiled underwear would help make sure they didn't soil them again, but this was not considered within the frame of human rights and dignity.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Video materials barely considered most of the areas I was examining. One, from a professional ABA team, was full of swearing, which was unexpected, to say the least.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjz0u9g1ULJY5IJghQ9mO8B2phekgLeo0vm8Xus3V5CdhY6a2FqYV8hzTIA_Bv7PfjcOoed276v9f7jXl7v4kmCMLTLYMrE08-O9y7SnRhGSto7TEaz9mt09TESiJuDrTtZCeAckMHwNCqXnrcQuq9qo3u9fHBHAn1njjlaKhkbuXzYU1n6w0BBdv2YQA" style="margin-left: 1em; margin-right: 1em;"><img alt="A table of results, discussed in the text" data-original-height="304" data-original-width="940" height="206" src="https://blogger.googleusercontent.com/img/a/AVvXsEjz0u9g1ULJY5IJghQ9mO8B2phekgLeo0vm8Xus3V5CdhY6a2FqYV8hzTIA_Bv7PfjcOoed276v9f7jXl7v4kmCMLTLYMrE08-O9y7SnRhGSto7TEaz9mt09TESiJuDrTtZCeAckMHwNCqXnrcQuq9qo3u9fHBHAn1njjlaKhkbuXzYU1n6w0BBdv2YQA=w640-h206" width="640" /></a></div><br />After the months of research, I summarised what I'd found. A table of some of this is shown above.<br /><br />Was there a good modern description of autism? Almost always no, there was not. How will teams know what autism is, if no-one tells them, one wonders.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Were teams given good ways to think about consent from the autistic child or young person? Sometimes. Of great concern, the wider look at literature showed that almost any attempt by the child to say no, or to escape, was regarded as one of the 'problem behaviours' to be stopped. It was far from clear how almost any child could signal 'no' or 'stop' and have it respected. But, parents were assured in their own consent forms that the child would be able to say no, and the team would stop. Did they? More research is needed on this.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Were teams encouraged to always check for harms from their research? Sometimes, there was some consideration of this. Only one item looked at this in any detail. I could find almost none that followed up the children to find out if there were longer term harms. </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Was there a proper look at Human Rights? Almost always no. </span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">Oddly, a lot of the materials around ethics considered things like the ABA teams not accepting a gift from a parent, or the ABA team members dressing in a business-like way. There was very little that looked at the ethics of what was done to the children and young people.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;">I had a look at more recent materials, and general ABA materials, to find out if this was improving. There was some</span><span style="color: #073763; font-family: arial;"> evidence of an improving set of philosophies and a bit more working with autistic individuals. But, as yet, not enough to make any real conclusions. It appears that the ABA field is not yet sharing power in meaningful ways with the autistic communities, and it was far from clear that they were properly considering what we actually want. There was a lot of mention of 'social validity', but mostly claiming that e.g. ABA was a medical necessity. Little evidence was found to prove their claim of medical necessity.</span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both;"><span style="color: #073763; font-family: arial;"><div class="separator" style="clear: both;"><b>Recommendations</b> were for example that further research is carried out by other teams to duplicate the methods of this study, and to investigate each of the areas of work I'd looked at. </div><div class="separator" style="clear: both;"><br /></div><div class="separator" style="clear: both;">I certainly needed a good cup of tea at the end of it all. </div><div class="separator" style="clear: both;"><br /></div><div class="separator" style="clear: both;"><b>My post-Dissertation comment:</b></div><div class="separator" style="clear: both;"><br /></div><div class="separator" style="clear: both;">Reflecting on the work, it is my view that the autistic communities need and deserve authentic, meaningful lives. Lives in which we can be properly heard and properly respected. Lives where any intervention done to us is done in ways we have asked for, with consent, and with the best of modern thinking from different fields. It's not at all clear how the ABA field is encouraging its teams to think about any of this in clear and modern ways.</div><div class="separator" style="clear: both;"><br /></div><div class="separator" style="clear: both;">In my experience, life isn't about compliance. It's about relationship, and one thing I noted during this work was how seldom any of the materials spoke about autistic children with any warmth and caring. </div><div class="separator" style="clear: both;"><br /></div><div class="separator" style="clear: both;">There's another piece of research that very much needs doing. Where is human relationship, in all of this?</div><div class="separator" style="clear: both;"><br /></div><div class="separator" style="clear: both;">Thank you for reading. </div><div class="separator" style="clear: both;"><br /></div><div class="separator" style="clear: both;"><br /></div><div><br /></div></span></div><p></p><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><br /><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-26476640040903877562022-10-28T03:29:00.000-07:002022-10-28T03:29:03.735-07:00I am not a fan of creating a "Profound Autism" category. Here's why.<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTJRJR82vJ3I3INuvW-IrDRLj-LJ7KN8jL3hiHGz7q6yBnYTBSApTg-bN-PJKY8LUMPx93oVhVPdq-DbDxBSP5ODgSCAcEGlCPKcHg9uWyjCQZbJcuLTMhPdSOhD_tb0Ri1cYybpgIRtvwjLsFKG0tVZOezMOMYtd_oF01_AbCLMC4R85zqjbgWoVnTg/s601/profound%20child.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Photo of a child with blonde hair. Over the photo is written the word Profound, in black against a red rectangular background" border="0" data-original-height="411" data-original-width="601" height="219" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTJRJR82vJ3I3INuvW-IrDRLj-LJ7KN8jL3hiHGz7q6yBnYTBSApTg-bN-PJKY8LUMPx93oVhVPdq-DbDxBSP5ODgSCAcEGlCPKcHg9uWyjCQZbJcuLTMhPdSOhD_tb0Ri1cYybpgIRtvwjLsFKG0tVZOezMOMYtd_oF01_AbCLMC4R85zqjbgWoVnTg/w320-h219/profound%20child.jpg" width="320" /></a></div><br /><p></p><p><span style="color: #073763; font-family: arial;">Fairly regularly, we get a few well-connected parents demanding that their autistic child be given a 'profound autism' label. They often claim that their child cannot communicate at all, and that their child lives in fairly permanent distress solely because of being autistic. </span></p><p><span style="color: #073763; font-family: arial;">They reason that the moment their child has this word Profound attached to their file, their lives will be transformed.</span></p><p><span style="color: #073763; font-family: arial;">Oddly, the same parents describe their child's actual list of difficulties. These often include, on the lists...</span></p><p><span style="color: #073763; font-family: arial;"><br />Not having their communication enabled.</span></p><p><span style="color: #073763; font-family: arial;">Extremely high anxiety levels.</span></p><p><span style="color: #073763; font-family: arial;">An intellectual disability.</span></p><p><span style="color: #073763; font-family: arial;">Epilepsy.</span></p><p><span style="color: #073763; font-family: arial;">For some reason, some professional told the parent that those things are 'profound autism', and they are completely convinced that their child cannot access proper support for any of those things without the word Profound in the file.</span></p><p><span style="color: #073763; font-family: arial;">It's very strange, isn't it.</span></p><p><span style="color: #073763; font-family: arial;">And it's not accurate. At all. </span></p><p><span style="color: #073763; font-family: arial;">It's vital that each child gets tailored support. This is easily achieved, in theory, by writing down the correct things on their file, as well as fully respecting them as a human being and fully respecting the warm, loving and caring relationships they need to thrive. If they need communication support, they should have that. If they need sensory accommodations, they should get those. If they have an actual medical condition such as epilepsy, of course they should have appropriate medical support. If they are in such distress that they are self-harming, absolutely we should investigate the cause of the distress and lessen it. </span></p><p><span style="color: #073763; font-family: arial;">We should improve their quality of life and improve their communication methods so they can partner with us in finding their own best ways forward. And yes, I mean enabling the communication of all children. All children can communicate. Not all do using words. We need to be skilled in understanding what they are communicating, and skilled in understanding that autistic communication is often different.</span></p><p><span style="color: #073763; font-family: arial;">My concerns about the thinking are more than just bafflement about the alleged magic of the word Profound, though.</span></p><p><span style="color: #073763; font-family: arial;">Regularly, those of us who work in the field of autism, as researchers, lecturers and advisers, encounter some rogue individuals and teams. A subgroup of people who enjoy finding children who are believed not to be able to communicate, ones who are believed to be 'too disabled' to speak out about what's done to them. We don't have to go far to find horrific media reports on what happens. Not everyone is a pleasant individual with a child's best interests at heart. You don't want to know the statistics on how many children's organisations have predators in their midst. The word 'profound' doesn't guard against this. It may make the situation worse.</span></p><p><span style="color: #073763; font-family: arial;">When I attend care settings to advise on a child or young person with higher support needs, what I need is an accurate summary on the file. For example: (fictional)</span></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: left;"><span style="color: #073763; font-family: arial;">"This is Sam. Sam is 7 years old and likes spending time with her pet dog, and with her brother and Dad. Sam loves the colour blue and enjoys watching cartoons with people she trusts. Sam gets on very well with person x and person y here, and uses communication system x to let people know what she needs. (Further details on Sam's strengths and joys).</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">Sam is autistic, enjoying a predictable routine and really clear instructions. Sam also has an intellectual disability meaning that (examples) . Sam is having treatment for epilepsy, and has sensory needs which include deep pressure from (e.g. weighted blanket etc) and avoiding sudden loud noise. See the full OT report in Appendix 2 which details the sensory accommodations needed. </span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">If Sam is starting to be distressed, she may do X, or Y and then benefits from seeking a quiet space with a trusted person with her and toys A and B. If Sam cannot regulate and becomes more distressed, this is the list of safe, respectful ways we work with Sam to help her regulate and recover...(list)"</span></p></blockquote><p><span style="color: #073763; font-family: arial;">I'm now getting a really good idea about Sam as a young person to be respected. Sam as a fellow human being. Sam's strengths, interests and joys. Sam's loved people and relationships. Sam having agency in their lives. Sam having an accurate list of how their brain best works, and what sort of medical and communication/sensory needs they benefit from. I now have something I can use to help evaluate how well we are meeting Sam's needs, so that we can all work together - Sam, team, family, our advisers, to improve things still further. It's collaborative, positive, respectful and - at all times - considering Sam's human rights. The team around Sam is picked to be caring, responsible, enabling, able to build trusted relationships, calm and friendly. If they make an error, they want to learn from it.<br /><br />Such places exist. Such files notes exist. The young people in such settings have a life where they can thrive.</span></p><p><span style="color: #073763; font-family: arial;">There is no part of that process that is improved by slapping the word PROFOUND on the front of the file.</span></p><p><span style="color: #073763; font-family: arial;">Thank you for reading. </span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><br /></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-37367945802924745692022-06-14T01:40:00.003-07:002022-06-14T01:50:44.115-07:00Research that dishonours and harms autistic people<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDPDFkF9TDJe46pnVdA__-zwRHxsO_PFRyCFm2-kYytecmCRcjXZ1GT8WSl5UlroXzyyZf5HLyIs4-EDWX0vFx6XktfgA-dGqqUrhc47w_-dwqBP0YThqTNocBDqFBt5ujPRLksJRA-q1UsysN0hXZFxuP9yIsMe0rb6-1JuLqBigUD1Q3fLLZw_6MOw/s471/DIVERSE%20GROUP%20ERASED.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="A picture of a diverse group of people. The word ERASED is written across it." border="0" data-original-height="325" data-original-width="471" height="276" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDPDFkF9TDJe46pnVdA__-zwRHxsO_PFRyCFm2-kYytecmCRcjXZ1GT8WSl5UlroXzyyZf5HLyIs4-EDWX0vFx6XktfgA-dGqqUrhc47w_-dwqBP0YThqTNocBDqFBt5ujPRLksJRA-q1UsysN0hXZFxuP9yIsMe0rb6-1JuLqBigUD1Q3fLLZw_6MOw/w400-h276/DIVERSE%20GROUP%20ERASED.jpg" width="400" /></a></div><br /><p></p><p><span style="color: #073763; font-family: arial;">This week, thousands of autistic people witnessed a research team describing us as risks, as deficits, as disordered. Parents of our loved children and young people were described as "Parents of ASD cases". The research team were very excited to write this research paper, they explained.</span></p><p><span style="color: #073763; font-family: arial;">The autistic communities received this series of violent, humiliating words, this dishonouring and dehumanising - and they said it hurts. They said please stop it. Some said stronger things.</span></p><p><span style="color: #073763; font-family: arial;">And it was met with silence.</span></p><p><span style="color: #073763; font-family: arial;">The team from a top University chose to interact only with people telling them how wonderful their research was.</span></p><p><span style="color: #073763; font-family: arial;">There's something very, very wrong, isn't there.</span></p><p><span style="color: #073763; font-family: arial;">Ethics is a vital part of research. It is about ensuring we do no harm to those we serve.</span></p><p><span style="color: #073763; font-family: arial;">As researchers, teams are there to serve the autistic communities. Not to hurt and insult them.</span></p><p><span style="color: #073763; font-family: arial;">Autistic people are not there to serve researchers as a convenient sample or a way to advance their careers.</span></p><p><span style="color: #073763; font-family: arial;">I'm part of these communities. As a proud parent of a fantastic autistic son. As an autistic person myself. As a researcher. As a consultant and lecturer in this field, including to the NHS in various roles.</span></p><p><span style="color: #073763; font-family: arial;">I am so sad to see some research teams behaving in these frankly callous ways. I wish the example above was rare. It is not.</span></p><p><span style="color: #073763; font-family: arial;">Every day, for me, it is such an honour to do what I can to uphold the lovely autistic people I am delighted to share life with. My family, my friends, my colleagues, the general autistic public on social media. Their honesty, integrity, determination, courage and friendship are worth more than words can say.</span></p><p><span style="color: #073763; font-family: arial;">We are not "ASD cases". </span></p><p><span style="color: #073763; font-family: arial;">We are your friends. We are your research colleagues. We are your neighbours. We are your fellow NHS workers. We are artists, and musicians. We are faith leaders and authors. We are parents and grandparents, brothers and sisters.</span></p><p><span style="color: #073763; font-family: arial;">We are worth every bit as much as every other human on this planet. Our way of interacting, our emerging cultures and ways of being, are worth their place. </span></p><p><span style="color: #073763; font-family: arial;">Those that need support have been asking for things that actually matter to us. There is more research than you could shake a journal at, on this subject. Instead, we get paper after paper describing us like we're some form of disease to be eradicated.</span></p><p><span style="color: #073763; font-family: arial;">I won't despair of research, as I see so many good people emerging. People who put us front and centre of research into our own lives. People who treat us as valued colleagues. As equals, not as laboratory specimens. People who are our allies. People who are autistic and working at the top levels of new thinking, new theories, new understandings. I am honoured to work with several such teams.</span></p><p><span style="color: #073763; font-family: arial;">I would very much like some researchers to stop hiding behind one another, and behind dehumanising words. To have the courage to re-evaluate their thinking and their beliefs. To have the curiosity to read those new narratives, to meet autistic teams and really collaborate, really understand.</span></p><p><span style="color: #073763; font-family: arial;">If you cannot gaze upon us and see our worth, our love, our caring, our whole humanity, this is not the field you should be in.</span></p><p><span style="color: #073763; font-family: arial;">This is our future. Our lives. Our present. Our history. Our community.</span></p><p><span style="color: #073763; font-family: arial;">You are not called to erase us, as researchers.</span></p><p><span style="color: #073763; font-family: arial;">You are called to earn our trust, and share in our future, with love. </span></p><p><br /></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-36865486730603749402022-02-03T01:19:00.004-08:002022-02-03T01:51:18.739-08:00Transforming our understanding of autistic people - Perception of Pain & Distress in Others<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjP__x8fwaT1ZMPkvdWbDDDxQMY55TejRMskJHL8eYng54TWW_RW7bAibgBAcWGvrlEv6-7xkf2DtG7JwLdhTl_6em-Ya_pzUfVLWvDOO0j43Uo1JPxdJDy9goe7LbeM-Q8CBWSfOHe2VOyu96y1hWFnRWmMAfYqo_HGK9OfajqU1r6VOrbtSBj11djvw=s406" style="margin-left: 1em; margin-right: 1em;"><img alt="A woman with long hair, sitting at a laptop with her hands over her eyes, in apparent distress" border="0" data-original-height="269" data-original-width="406" height="265" src="https://blogger.googleusercontent.com/img/a/AVvXsEjP__x8fwaT1ZMPkvdWbDDDxQMY55TejRMskJHL8eYng54TWW_RW7bAibgBAcWGvrlEv6-7xkf2DtG7JwLdhTl_6em-Ya_pzUfVLWvDOO0j43Uo1JPxdJDy9goe7LbeM-Q8CBWSfOHe2VOyu96y1hWFnRWmMAfYqo_HGK9OfajqU1r6VOrbtSBj11djvw=w400-h265" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">In February 2022, a new publication was released for Criminal Justice teams, in the UK.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1051269/achieving-best-evidence-criminal-proceedings.pdf">https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1051269/achieving-best-evidence-criminal-proceedings.pdf</a><br /></span></div><p></p><p><span style="color: #073763; font-family: arial;">"Achieving best evidence in </span><span style="color: #073763; font-family: arial;">Criminal Proceedings: </span><span style="color: #073763; font-family: arial;">Guidance on Interviewing Victims and </span><span style="color: #073763; font-family: arial;">Witnesses, and Guidance on Using </span><span style="color: #073763; font-family: arial;">Special Measures".</span></p><p><span style="color: #073763; font-family: arial;">In it, a stark and concerning misdescription of autistic people, in my view: (page 38).</span></p><p style="text-align: left;"><span style="color: #073763; font-family: arial;">"...witnesses with autistic spectrum disorder..are likely to have little understanding of the emotional pain or problems of
others..."</span></p><p><span style="color: #073763; font-family: arial;">Certainly, in the 1940s, that was one of the original misunderstandings about autistic people.</span></p><p><span style="color: #073763; font-family: arial;">Let's look at an up to date informal poll result, asking autistic people if they felt this was true, for them. </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjgF8qVB-SxlqQKSBE5odQ-tvcbGtF2S_MOwUHFDo09uQ5E6ahrydMQcAda2PRzL6KOCWIZcnA4FCinNIFkH_ojv0LmUGrrQolCmIsRRpFKP1mPEoXpkFM2a0Y4gC7KI9VPFFqgNQRezlYIwi9c5nelE4coBxcJQHyxpmdDPBmLOqSoHyVtZ6OhznpcBQ=s820" style="margin-left: 1em; margin-right: 1em;"><img alt="The poll, described in the text" border="0" data-original-height="564" data-original-width="820" height="440" src="https://blogger.googleusercontent.com/img/a/AVvXsEjgF8qVB-SxlqQKSBE5odQ-tvcbGtF2S_MOwUHFDo09uQ5E6ahrydMQcAda2PRzL6KOCWIZcnA4FCinNIFkH_ojv0LmUGrrQolCmIsRRpFKP1mPEoXpkFM2a0Y4gC7KI9VPFFqgNQRezlYIwi9c5nelE4coBxcJQHyxpmdDPBmLOqSoHyVtZ6OhznpcBQ=w640-h440" width="640" /></a></div><p><span style="color: #073763; font-family: arial;">There were more than 2500 people interacting with the poll. Some just wanted to see the results. That leaves us with just over 2000 autistic people giving answers.</span></p><p><span style="color: #073763; font-family: arial;">50 of those said yes, they felt they had little understanding of the emotional pain of others.</span></p><p><span style="color: #073763; font-family: arial;">1,970 autistic people said no, this was not true, for them.</span></p><p><span style="color: #073763; font-family: arial;">I'll repeat that: 1,970 autistic people responding to this informal Twitter poll said no, it is not true that they have little to no understanding of the emotional pain of others.</span></p><p><span style="color: #073763; font-family: arial;">If this poll isn't good enough evidence to question that statement, I would direct people to endless personal accounts visible online. Endless blogs. Endless books authored by autistic people. Endless online videos. W</span><span style="color: #073763; font-family: arial;">e can have all manner of academic debates about whether an informal Twitter poll is reflective of the wider autistic population. That's not the point, here, though. The point is, if that statement in that criminal justice paper is true, how on earth did we end up with this poll result? Twitter isn't a hidden backwater. It's a public social media platform.</span></p><p><span style="color: #073763; font-family: arial;">For decade after painful decade, autistic people's actual voices and lives haven't been relevant. Instead of asking autistic people, we've delved into ancient texts, as if we are following some ancient religion instead of dealing with real live people, right in front of us. And it</span><span style="color: #073763; font-family: arial;"> concerns me greatly. </span></p><p><span style="color: #073763; font-family: arial;">What else concerns me? The number of autistic victims of crime. Here's another informal Twitter poll. </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhecNf70GncSPdiE7Isg1HwDIxXOJRuWhnxrLpQV3whGViN68-VXjnc3_ImzwAWreNlEusIFpBcxLjOZqHT1MNyVi4MgoXeL_XQTCHAwjyfxRb8_rxQT_ICM_Jd9G9Vy8yTFGPgvqCRepY6eUKKtH1QAxLBcYnRs-uI5GYD1VSBO8dkQzuUjD5UiqQUng=s829" style="margin-left: 1em; margin-right: 1em;"><img alt="Twitter poll of results around autistic victims of stalking" border="0" data-original-height="484" data-original-width="829" height="374" src="https://blogger.googleusercontent.com/img/a/AVvXsEhecNf70GncSPdiE7Isg1HwDIxXOJRuWhnxrLpQV3whGViN68-VXjnc3_ImzwAWreNlEusIFpBcxLjOZqHT1MNyVi4MgoXeL_XQTCHAwjyfxRb8_rxQT_ICM_Jd9G9Vy8yTFGPgvqCRepY6eUKKtH1QAxLBcYnRs-uI5GYD1VSBO8dkQzuUjD5UiqQUng=w640-h374" width="640" /></a></div><br /><span style="color: #073763; font-family: arial;">"Poll for autistic people. Have you ever been stalked by someone?".<br />The majority responding said yes. Big numbers responding again.</span><p></p><p><span style="color: #073763; font-family: arial;">We can have another academic debate about whether the percentages reflect the whole autistic population. Or we can take a step back, sit on our egos, and say, "Oh heck, there are hundreds of autistic people who have been victims of stalking and We Had No Idea Until Now." We hadn't even been asking these questions. Across the world, millions of autistic people who are victims of crime, and we know almost nothing about them.</span></p><p><span style="color: #073763; font-family: arial;">I'd like us to reflect carefully on the message we're giving to Courts and others in the Criminal Justice System here in the UK: That autistic people can't feel the pain of others? Do we think this is how we achieve justice for autistic people? </span></p><p><span style="color: #073763; font-family: arial;">I would suggest that telling Judges, Juries and Magistrates that we probably can't feel the pain of others is likely to prejudice the quest for justice for us. It's simply untrue in most instances, and it's extraordinary to find it in a brand new document for something this important. Autistic people usually feel deeply. We usually hurt deeply. We usually care deeply. Exceptions will apply, as is the case for all humans on the planet. No Criminal Justice proceeding should start with the untrue premise that the marginalised group are generally unfeeling. Would it have potential to lead a Jury, for example, to believe the crime against us wasn't that serious, as we can't feel much anyway? One can only hope not. But, why say something like this at all?</span></p><p><span style="color: #073763; font-family: arial;">May I strongly recommend that, when we are writing documents about marginalised people, we include a good number of representatives of different groups in those communities, a good number of academics & others with expertise from those communities, and we get it right?</span></p><p><span style="color: #073763; font-family: arial;">This isn't the mid 1940s any more, and we cannot simply keep repeating old myths at new audiences. Autistic lives are as precious, as fully worthwhile, as the lives of everyone else. Justice is already out of reach of most. Goodness me, as a victim of crime myself, such a statement portraying me as an unfeeling entity would put me off approaching Police or a Court at all. It's dreadful.</span></p><p><span style="color: #073763; font-family: arial;">Autistic people deserve our respect, our accuracy, and our humility in listening to them. Autistic individuals are fully worthwhile people who usually feel deeply for others, are usually victims of crime, and are too often forced to live appalling lives littered with horrifying myths from the past.</span></p><p><span style="color: #073763; font-family: arial;">Let's do better than this, please.</span></p><p><span style="color: #073763; font-family: arial;">Thank you for reading.</span></p><p><br /></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><span style="color: #073763; font-family: arial;"><br /></span><p></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-35640421475624832742021-11-30T01:59:00.001-08:002021-12-17T01:46:47.164-08:00Useful New Autism Info for Care Settings <p> </p><p><span style="color: #073763; font-family: arial;">This is a list of useful research papers and Commissioned documents that have changed how we think about autistic people, and how we respond to their distress, co-occurring conditions and their brain events.</span></p><p><span style="color: #073763; font-family: arial;"><a href="https://www.ndti.org.uk/resources/publication/its-not-rocket-science">https://www.ndti.org.uk/resources/publication/its-not-rocket-science</a> is a commissioned report by young autistic people, on easy ways to make wards and care settings into sensory-friendly spaces. Lots of useful new information on the sensory needs of autistic people, and the social communication needs.</span></p><p><span style="color: #073763; font-family: arial;"><a href="https://www.local.gov.uk/our-support/sector-support-offer/care-and-health-improvement/autistic-and-learning-disabilities/autistic/considering-and-meeting-sensory-needs-autistic-people-housing">https://www.local.gov.uk/our-support/sector-support-offer/care-and-health-improvement/autistic-and-learning-disabilities/autistic/considering-and-meeting-sensory-needs-autistic-people-housing</a> is a commissioned paper from the Local Government Association on how to ensure really good housing for autistic people. </span></p><p><span style="color: #073763; font-family: arial;"><a href="https://www.waterstones.com/book/avoiding-anxiety-in-autistic-children/luke-beardon/9781529394764">https://www.waterstones.com/book/avoiding-anxiety-in-autistic-children/luke-beardon/9781529394764</a> is an example of an excellent up to date and accessible book about how to avoid anxiety for autistic children. Dr Luke Beardon has written other books for different age groups and situations, equally recommended. Other booksellers are available.</span></p><p><span style="color: #073763; font-family: arial;"><a href="https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2306">https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2306</a> is a new paper looking at the huge number of autistic people who experience diagnosable trauma from 'traditional' and other events, including bullying. It changes how we think about 'behaviour'.</span></p><p><span style="color: #073763; font-family: arial;"><a href="https://www.peacepathway.org/">https://www.peacepathway.org/</a> Potentially useful information about autistic people and difficulties with food/eating.</span></p><p><span style="color: #073763; font-family: arial;"><br /><a href="https://www.jpma.org.pk/PdfDownload/10585">https://www.jpma.org.pk/PdfDownload/10585</a> The newer research into autism and hypermobility/EDS, suggesting more than half of autistic people may have one of the forms of hypermobility, which can lead to or include exhaustion, movement difficulties, POTS (potentially causing collapse), and pain.<br /><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-13130273181096670852021-11-20T01:16:00.003-08:002021-11-20T01:16:44.724-08:00Strengths-Based Approaches for Autistic Individuals<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgzrBIzlJEFLzs_1D5L6WCDed1KB4v1i4z35fy55DXGwDDD1UVBghmHCi9vUL6Ccci1Tnmw3dSjeU6bq9445eT5WLWilYc5lpdYNdXh5MxYGU1AEwbceBw8D2YcYV48LtmWIuW8jwSdFU7/s504/female+headphones.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A picture of a person wearing headphones. They have dark hair and are smiling. The background is rainbow-coloured." border="0" data-original-height="340" data-original-width="504" height="270" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgzrBIzlJEFLzs_1D5L6WCDed1KB4v1i4z35fy55DXGwDDD1UVBghmHCi9vUL6Ccci1Tnmw3dSjeU6bq9445eT5WLWilYc5lpdYNdXh5MxYGU1AEwbceBw8D2YcYV48LtmWIuW8jwSdFU7/w400-h270/female+headphones.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">For many years, people assumed quality of life for autistic people only happened when we were 'normalised' from an early age. This 'Early Behaviour Intervention' usually focused on improving our allegedly weak areas, and enforcing this improvement for many hours a week.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVAi0l-e6Axo4pT1Mt9GKHHvrg6637rk3H7binhyphenhyphenVzXN7cKDXtCPCmI_V6pVYHqGq4sGnDIB3yrrwvot5hGxgwtN6HJ7bIidBv5HePQFRe92q3R-2BvNfqGvH_lnhoEYFb1K-_B9hL2g6H/s726/Poll+on+eye+contact+and+outcomes+autism.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="An informal Twitter poll asking autistic people if being made to use eye contact has improved their lives. Most said a clear 'no'." border="0" data-original-height="507" data-original-width="726" height="279" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVAi0l-e6Axo4pT1Mt9GKHHvrg6637rk3H7binhyphenhyphenVzXN7cKDXtCPCmI_V6pVYHqGq4sGnDIB3yrrwvot5hGxgwtN6HJ7bIidBv5HePQFRe92q3R-2BvNfqGvH_lnhoEYFb1K-_B9hL2g6H/w400-h279/Poll+on+eye+contact+and+outcomes+autism.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div>There is very little evidence of this approach leading to a better quality of life. The informal poll shown above is a clue. Hundreds of votes. Did all that 'you must make eye contact' training lead to a better quality of life for them? Hardly anyone said yes.<br />Below, another informal poll, again with hundreds of votes. What about wider social skills training for us? Did it improve our quality of life? Hardly anyone said yes.<br /><br />It's useful to ask people if something helps, isn't it.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_UNNETkNrKFFaNnhG3bDKRPm8PzYzkEifumj5MfOXfRc24oL8nQLB5O2JJ_n73xlBymZodVUne0J7vfnGcRo95vQVZeQNTTF5VgTGKTnHMcGmqnFJoF_a75wFXS8fF7LLsq_VuOhyGxD2/s844/Poll+autism+social+skills+2021.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Another informal Twitter poll asking if it helped quality of life to have our social skills normalised. Most people said a clear no." border="0" data-original-height="639" data-original-width="844" height="303" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_UNNETkNrKFFaNnhG3bDKRPm8PzYzkEifumj5MfOXfRc24oL8nQLB5O2JJ_n73xlBymZodVUne0J7vfnGcRo95vQVZeQNTTF5VgTGKTnHMcGmqnFJoF_a75wFXS8fF7LLsq_VuOhyGxD2/w400-h303/Poll+autism+social+skills+2021.jpg" width="400" /></a></div><br /><span style="color: #073763; font-family: arial;"><br /><br />There is growing evidence of weakness-based approaches such as ABA leading to poor self esteem and sometimes catastrophic outcomes. Other of my blogs discuss these. This isn't difficult to understand. In the same way, if you were described as a list of problems that had to be solved, every day of your life, you might feel depressed, anxious and exhausted.</span><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">A strengths-based approach, building on things we are good at, has an increasing fan base, amongst Professionals as well as autistic people.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">There are a lot of good research papers that may help with our thinking.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">Here are a few of them:</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><a href="https://web.a.ebscohost.com/abstract?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl=01623257&AN=145259473&h=tjrCbU5sQjdBIFNRtRjpA4TqA2eZ23BoYRdn9Is2PLQuIFnwQvJE7ycq%2ffr3HbnAC%2f18NmZEYkexREGzKr5Y9A%3d%3d&crl=c&resultNs=AdminWebAuth&resultLocal=ErrCrlNotAuth&crlhashurl=login.aspx%3fdirect%3dtrue%26profile%3dehost%26scope%3dsite%26authtype%3dcrawler%26jrnl%3d01623257%26AN%3d145259473">Strengths-based approaches to preparing for employment</a><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><a href="https://www.liebertpub.com/doi/abs/10.1089/aut.2019.29002.aju?journalCode=aut">An expert discussion on strengths-based approaches</a><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><a href="https://www.sciencedirect.com/science/article/pii/S1750946720300027">Children and young people talking about their strengths</a><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><a href="https://pubs.asha.org/doi/abs/10.1044/persp2.SIG1.56">Strengths-based approaches to working with autistic people -</a><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: arial;"><a href="https://link.springer.com/content/pdf/10.1007/s10826-020-01741-1.pdf">Parents and what they say about the strengths of their autistic children</a><br /></span></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">It is an important discussion for all of us to have.<br /><br />How is a team going to build on my fantastic young person's strengths, as well as supporting them in any area where they need that support?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">How can their hobbies and interests be a source of relaxation and joy to them, not a thing used by teams to enforce normalisation?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">How can we appreciate diversity, and work collaboratively with autistic people to understand autistic culture and communication?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">There are so many useful things to keep exploring, and so many more positive outcomes to be discovered.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">I am grateful, as ever, for teams who are promoting this strengths-based, positive approach, and who refuse to use the negative, 'deficit and disorder' thinking of the past.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">I would like every autistic individual to be safe to live their best, authentic lives, able to thrive as themselves, not as a copy of someone else. That's a Human Rights approach, and a caring approach. I commend it to all.</span></div><br /><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-14566502247683471142021-10-20T02:28:00.001-07:002021-10-20T02:28:31.495-07:00What is autism? A modern understanding for 2021<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjecTDLopXxmHxCVV0PMiiKlqz0RBlkITFOe9ej1CUFDqwTcrlQ_SmkQdm-kfPJbvdzl6VMFTwfyMKbsZPXjOUJ2pkt0qpyrD5Py4SZVHlBSJ7-hdZovm99zgmuvykDFOkcaGpeOr_7LDdB/s471/woman+question+mark.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A photo of a woman with blonde hair. She is wearing a grey jacket and white top. Above her head are question marks. She looks quizzical." border="0" data-original-height="471" data-original-width="409" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjecTDLopXxmHxCVV0PMiiKlqz0RBlkITFOe9ej1CUFDqwTcrlQ_SmkQdm-kfPJbvdzl6VMFTwfyMKbsZPXjOUJ2pkt0qpyrD5Py4SZVHlBSJ7-hdZovm99zgmuvykDFOkcaGpeOr_7LDdB/w174-h200/woman+question+mark.JPG" width="174" /></a></div><span style="color: #073763; font-family: arial;">What is autism?</span><p></p><p><span style="color: #073763; font-family: arial;">We get asked this a lot.</span></p><p><span style="color: #073763; font-family: arial;">There's been quite a battle going on. I will generalise:</span></p><p><span style="color: #073763; font-family: arial;"><b>Group one</b>... fans of two men who thought they'd invented it in the 1940s, and who were completely convinced that autistic people were broken versions of other people. Young boys with strange behaviour...maybe an occasional young girl. No empathy, repetitive meaningless behaviour, resistance to change, no interest in other people.</span></p><p><span style="color: #073763; font-family: arial;">It didn't matter that autism was well described by a woman, years beforehand. The men got the acclaim for this supposed discovery.</span></p><p><span style="color: #073763; font-family: arial;">It was important to put autistic people into 'mental hospitals', describing them in entirely negative language like deficit, disorder, obsessive, etc. It was important to stop their 'behaviour' by enforcing normalisation, because this was believed to be better for us.</span></p><p><span style="color: #073763; font-family: arial;">We were too-often experimented upon as if we lacked opinions, feelings, insight, pain responses or human rights. </span></p><p><span style="color: #073763; font-family: arial;">No progress was made. But they just had to keep on doing these things, convinced that at any moment, they were going to prove that there was some fix, some cure, some pill, potion, lotion, electric shock, operation or genetic wizadry that would remove autism.<br /><br />Nothing worked. Well, some autistic people were forced to do repetitive things, and others were forced to sit really still and be really quiet. This was called a success. Mmm.</span></p><p><span style="color: #073763; font-family: arial;"><b>Group two</b>... the autistic researchers, academics, specialists and our allies. The rise of the neurodiversity movement. </span></p><p><span style="color: #073763; font-family: arial;">We want human rights for all autistic people.</span></p><p><span style="color: #073763; font-family: arial;">We want every autistic person to thrive as their own best version of themselves, not a fake copy of someone else.</span></p><p><span style="color: #073763; font-family: arial;">We appreciate autistic communication as a genuinely different way to socialise with one another. No, really. See research links below.</span></p><p><span style="color: #073763; font-family: arial;">We appreciate the deep focus that autistic people have for their specialist interests, their hobbies and perhaps future careers.</span></p><p><span style="color: #073763; font-family: arial;">We see autism as a largely sensory condition, in which our brains take in too much information in busy, noisy places. Too much from flickering light and loud sound. Too much from odours and rough textures. Too much from noisy chattering. So we respect those who need quieter, better spaces.</span></p><p><span style="color: #073763; font-family: arial;">We want every autistic person to have excellent support, whatever their level of support needs. Truly person-centred.</span></p><p><span style="color: #073763; font-family: arial;">We want every autistic person to have excellent healthcare, whatever their communication needs. That worryingly low average age of death has to change.</span></p><p><span style="color: #073763; font-family: arial;">We want all families to feel supported and valued also.</span></p><p><span style="color: #073763; font-family: arial;">We want to leave negative language about us in the past, where it belongs. Stigmatising language has done such damage. None of it is necessary. Not for alleged 'treatment' or for anything else.</span></p><p><span style="color: #073763; font-family: arial;">In line with the National Autistic Society and the Parliamentary Reports, we want autistic people to be freed from inappropriate hospital placements and given proper, safe community homes where they can belong. Where they can thrive. Where they can flourish as themselves, amongst those they choose and whom they trust.</span></p><p><span style="color: #073763; font-family: arial;">We know that so many autistic people are still to be discovered, thanks to those old myths about it. Autistic females, Black individuals, Asian individuals, older individuals. So many different groups who were left out of diagnosis, denied diagnosis. </span></p><p><span style="color: #073763; font-family: arial;">So many who have found better self-understanding through realising they are autistic. Better chances of finding places that suit their needs, now they understand those needs. Better chances of finding good relationships, now they understand how they communicate and how they can thrive.</span></p><p><span style="color: #073763; font-family: arial;">A diagnosis should never be a pathway to a locked door, normalisation-enforcement and a daily list of negative words and low expectations.</span></p><p><span style="color: #073763; font-family: arial;">A diagnosis should be a pathway to thriving and to meaningful access to everyday things, in the same way as others expect.</span></p><p><span style="color: #073763; font-family: arial;">Time to leave the past where it belongs, and gather round our autistic loved ones with new appreciation, and new hope for the future.<br /><br />Thank you for reading.<br /><br /><br /><br /><br />Want more info and research on the above? Sure - go to </span></p><p><span style="color: #073763; font-family: arial;"><a href="http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html">http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html</a> as a good starting point. Using that as your starting point, lLook up the best respected autistic academics and our allies, and read what they write. Get the books by Dr Luke Beardon, for example. Look at the outputs from the autistic-led research conferences that happen regularly through the year. Ask us.</span></p><p><br /></p><p><span style="color: #073763; font-family: arial;"><br /></span> </p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-61247233214441558032021-09-25T00:27:00.004-07:002021-09-25T01:10:23.953-07:00Autism is not a look or a behaviour. About enforcing 'Masking'. <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl2qqj4NTzLsaHSyJZKQluY6FdaSTqT1ShKCL6wf_VCO7MbsYGQb9hUvHQYUn41TRbhzd2lunawfROizV0d5HMgiREJ5rvf0pNXC8i3OMiHB-4iOeFzuYIPlErK5S95WgsA2ouLN4ZGnyl/" style="margin-left: 1em; margin-right: 1em;"><img alt="A drawing of a boy who is smiling. He has brown hair and a yellow shirt" data-original-height="540" data-original-width="529" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhl2qqj4NTzLsaHSyJZKQluY6FdaSTqT1ShKCL6wf_VCO7MbsYGQb9hUvHQYUn41TRbhzd2lunawfROizV0d5HMgiREJ5rvf0pNXC8i3OMiHB-4iOeFzuYIPlErK5S95WgsA2ouLN4ZGnyl/" width="235" /></a></div><span style="font-family: arial;">In the press, news that a team have found a way to give fewer diagnoses to autistic children.</span><p></p><p><span style="font-family: arial;">"Autism therapy aimed at infants may reduce likelihood of later diagnosis: Study suggests tailored therapy could help some children develop social skills before school age", reads the headline in the Guardian newspaper for example (20 September 2021).</span></p><p><span style="font-family: arial;">The alleged therapy appears to be based on ignoring a young child if they behave autistically, or giving them a 'time out' for doing so. Parents are taught to reward any behaviour that matches non-autistic social skills, such as eye contact, waving when someone else waves, etc. The end result is to deliver to the parent one child who appears normal and can make eye contact. Like the picture at the top.</span></p><p><span style="color: #121212; font-family: arial;"><span style="background-color: white; font-variant-ligatures: common-ligatures;">"This is the first worldwide evidence that a pre-emptive intervention can reduce autism behaviours and the likelihood of a later diagnosis,” said Prof Jonathan Green at the University of Manchester, breathless with excitement. OK, I may have added the 'breathless with excitement' bit. But that's the general tone of the Press - that if we can 'reduce autism behaviours' we can stop the autistic children getting a diagnosis, and isn't that fantastic!</span></span></p><p><span style="background-color: white; color: #121212; font-family: arial; font-variant-ligatures: common-ligatures;">OK. Reality check. I asked autistic people if they had stopped being autistic, once they learned to do eye contact, waving, etc.</span></p><p><span style="color: #121212; font-family: arial;"><span style="background-color: white; font-variant-ligatures: common-ligatures;"><br /></span></span></p><div class="separator" style="clear: both; font-size: 17px; text-align: center;"><span style="color: #121212; font-family: arial;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE18DYQonkB_fs-yZT3W-IcPr2g4PV1HVRMAbJykjiIN0bmpeWfIL67rDfCHWJO-J-YLmG3C7jL8uoqqvIGEs865QhxERbfcRen2LNSc1JRYNZTLfihUcYg0Vxrp6Fwgs3o4j2E2kDPEX1/" style="margin-left: 1em; margin-right: 1em;"><img alt="An informal Twitter poll as described in the text" data-original-height="573" data-original-width="820" height="280" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE18DYQonkB_fs-yZT3W-IcPr2g4PV1HVRMAbJykjiIN0bmpeWfIL67rDfCHWJO-J-YLmG3C7jL8uoqqvIGEs865QhxERbfcRen2LNSc1JRYNZTLfihUcYg0Vxrp6Fwgs3o4j2E2kDPEX1/w400-h280/Poll+autism+eye+contact+waving+copying.jpg" width="400" /></a></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: center;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">That's odd, isn't it. There's over 1000 votes. Hardly more than a handful thought that doing those things means they're now cured of autism. No, they'd still be autistic.</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">So what on earth is going on? Other Press articles suggest that perhaps they wouldn't develop 'full blown autism' if they learned to hide being autistic. What? Is that even supposed to make sense? There's not even a diagnostic category of 'full blown autism'. We're either autistic, or we're not.</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">There are so many problems with this allegedly exciting new research, I and other professionals barely know where to begin.</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">Autism is not a 'look'. It is not a 'behaviour'. It is a different neurology and we are born with it, from all the evidence to hand.</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">Training autistic children to appear nonautistic is called training them to 'mask' or 'camouflage' their natural and normal behaviour, and replace it with inauthentic, exhausting mimicking of others, all day, every day. </span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">The end result of that is not happiness. It is misery. Misery to such a degree that we now know from research that there are links to suicide. Reference and so many more modern research papers can be found in <a href="http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html">http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html</a></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">Brand new research details the narratives around how 'masking' leads to autistic burnout and other mental health crises. Here's the link to the article, which also discusses the other awful outcomes of enforced normalisation: <a href="https://www.liebertpub.com/doi/full/10.1089/aut.2021.0021">Autistic burnout</a></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">So, our triumph is to stop autistic children being diagnosed, is it? Getting help and support, finding their peers, learning who they are? That's good, is it?<br />Because autism is some terrible thing that needs hiding, is it?<br />Who says so?</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">For sure some autistic people have a tough life, with multiple difficulties. A life that needs a lot of support. A life that may need medical assistance for actual medical situations such as epilepsy, or pain/mobility conditions such as Ehlers Danlos (both of which can co-exist in autistic people). But in what way is preventing a diagnosis a fantastic idea? So we can fail to support them? So we can make them exhausted from masking as well as struggling?</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">This is recklessness, not triumph. It's wrecking children's lives.</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">And it has no place in a modern society.</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">The Medical Professions are tasked to do no harm. To put the rights of the child at the forefront of their thinking. To uphold Human Rights legislation such as the Convention on the Rights of Persons with Disabilities (CRPD) which says that autistic children have the right to their autistic identity. I'm not sure people even read that document, let alone uphold the very principles our Country signed up to.</span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; font-size: 17px; text-align: left;"><span style="color: #121212; font-family: arial;">Condemning young children to a life of poor outcomes, so others can be pleased that they 'look normal' or don't have 'full blown autism' (the sort where we are <i>visibly autistic</i>, shock!) is an act of terrible cruelty, and I suggest that we never, ever do it again.<br /><br />Thank you for reading.</span></div><span style="color: #121212; font-family: arial;"><br /><br /></span><p></p><p><span style="color: #121212; font-family: arial;"><span style="background-color: white; font-size: 17px; font-variant-ligatures: common-ligatures;"><br /></span></span></p><p><span style="color: #121212; font-family: arial;"><span style="background-color: white; font-size: 17px; font-variant-ligatures: common-ligatures;"><br /></span></span></p><p><span style="font-family: arial;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><br /></span></div><span style="font-family: arial;"><br /><br /></span><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-88763664243593759902021-09-02T02:25:00.003-07:002021-09-02T02:25:18.443-07:00Autistic people and phone calls<p> </p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL0KS4rn10SnNXcNHvxmKITx7fNqhC9MlWsUX-SlzG_yFXLUE_Z4WNzt42bNgTAlglrkbJsO4E5zRp0g4mh7VXpO-RsFMSNFZ9PCGiYkKNeAE9s9Hd-zAIpI_OeD_T7ZWqpzA-5BEQfsyo/s526/Phone+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A picture of a mobile phone being held in someone's hand" border="0" data-original-height="327" data-original-width="526" height="199" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL0KS4rn10SnNXcNHvxmKITx7fNqhC9MlWsUX-SlzG_yFXLUE_Z4WNzt42bNgTAlglrkbJsO4E5zRp0g4mh7VXpO-RsFMSNFZ9PCGiYkKNeAE9s9Hd-zAIpI_OeD_T7ZWqpzA-5BEQfsyo/w320-h199/Phone+2.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="color: #073763; font-family: arial;">There's a lot of misunderstanding about autistic people, and phone calls.</span><p></p><p><span style="color: #073763; font-family: arial;">Many autistic people are not always able to speak, or may not be able to speak at all.</span></p><p><span style="color: #073763; font-family: arial;">Unfortunately, not a lot of people know this. So there can be major difficulties with people misunderstanding what's happening.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT3Thd_kcXyeD5XKE137PB-KQ5E2AYhW5BKWE0PCVxQvrmwu5DHz9dFdPpMmuHsrbvhiT91ahkZlY3Nm7BHf2KdYbU7YDG6jk5v_DH25YM6oWw_8cPjm9zu0EYF36S7u1b5EsAPwWTyNj5/s606/Autism+speech+poll+twitter+me+161119.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A poll result from Twitter, asking autistic people if they can speak. A large number said 'not always'. Some said 'no'." border="0" data-original-height="276" data-original-width="606" height="292" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT3Thd_kcXyeD5XKE137PB-KQ5E2AYhW5BKWE0PCVxQvrmwu5DHz9dFdPpMmuHsrbvhiT91ahkZlY3Nm7BHf2KdYbU7YDG6jk5v_DH25YM6oWw_8cPjm9zu0EYF36S7u1b5EsAPwWTyNj5/w640-h292/Autism+speech+poll+twitter+me+161119.JPG" width="640" /></a></div><br /><span style="color: #073763; font-family: arial;"><br /></span><p></p><p><span style="color: #073763; font-family: arial;">Equally unfortunately, people expect us to use phones reliably.<br /><br />I can sometimes use phones. It depends if I'm in a good enough state to speak. It depends if I have rested enough to prepare for a known phone call. It depends if I know and trust the person who is calling me. It depends if I can calculate how long it will take for the call, since my ability to speak is time-limited, much of the time. A short call may be OK. A long call, holding on for a call centre, completely terrifying and impossible a lot of the time.</span></p><p><span style="color: #073763; font-family: arial;">Lots of autistic people can only sometimes use phones. It's a major barrier to healthcare, to job success, to getting basic services and basic human rights. It's great when companies and organisations know the law, want to work with us, and create different ways to interact. Text. Email. Webchat. Timed called with a known person. Anything that works for us as individuals. </span></p><p><span style="color: #073763; font-family: arial;">But, too often, what we get is a sort of a 'gotcha!' from people who don't understand. "Ha, you could phone yesterday - you're a liar!". Same principle as the ones who follow wheelchair users round a store to see if they can stand for a while (most can...the chair is to save energy, extend the range of where people can go. and help with balance, for many health conditions including heart situations, connective tissue conditions and joint problems). If they're seen standing or taking a couple of steps, some arguably unwell or ignorant people get a thrill out of saying that 'gotcha!'</span></p><p><span style="color: #073763; font-family: arial;">Disabled people have to work very very hard to get the same things as everyone else. And explain, endlessly, to everyone around us. Exhausting. Hour after hour. Day after day.</span></p><p><span style="color: #073763; font-family: arial;">Even if we pay for services ourselves, we're often expected to put up with shoddy service and appalling treatment. Even if it could lead to injury or other danger for us.</span></p><p><span style="color: #073763; font-family: arial;">And, if we complain, we're accused of Taking Services Away From People That Really Need Them.</span></p><p><span style="color: #073763; font-family: arial;">It's just extraordinary.</span></p><p><span style="color: #073763; font-family: arial;">Let's do better, together. Be knowledgeable about how many autistic people may struggle to speak, sometimes or always. Be aware how many will struggle with phone calls, and being able to say what we need during them. Be willing to help make changes so that we can survive, and thrive, the same as other people.</span></p><p><span style="color: #073763; font-family: arial;">Thank you for reading.</span></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-49802746771021010102021-08-23T01:06:00.004-07:002021-09-20T00:00:19.644-07:00The new ABA textbook, and why there are serious concerns<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirdquyKqG13x4Qx0uaj9Qkqw2ZpdHCboDj1s8shbpXySk9w6a1pjkMRwPUmuLLcNOLnMaWIJB0kV3B9MBb3pT3Gkt8PS5vQiiV-HTMSKVtZwW7Dc3ULKZ8EdxehrUJS2TDuuFELVfHwNJN/s960/Cooper+white+bible+ABA.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="A book with the heading Applied Behavior Analysis - Third Edition" border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirdquyKqG13x4Qx0uaj9Qkqw2ZpdHCboDj1s8shbpXySk9w6a1pjkMRwPUmuLLcNOLnMaWIJB0kV3B9MBb3pT3Gkt8PS5vQiiV-HTMSKVtZwW7Dc3ULKZ8EdxehrUJS2TDuuFELVfHwNJN/w240-h320/Cooper+white+bible+ABA.jpg" width="240" /></a></div><br /><p><span style="color: #073763; font-family: arial;">For many years, funders and parents have been informed that there is only one approach that works, for autistic people. Applied Behaviour Analysis, usually shortened to just ABA.</span></p><p><span style="color: #073763; font-family: arial;">I and thousands of other autistic people in academia and other areas have raised grave concerns about this approach, and the behaviour of some of its followers.</span></p><p><span style="color: #073763; font-family: arial;">Quite often, we are told that ABA is different now. Better. Kinder. We're told that it works.</span></p><p><span style="color: #073763; font-family: arial;">I've done Blogs already on the research showing that it doesn't 'work'. Not even when allegedly stopping problematic behaviours. My general reading list around autistic research is kept at <a href="http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html">http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html</a> and details some of them.</span></p><p><span style="color: #073763; font-family: arial;">This post is going to be about a particular book, which ABA enthusiasts term 'the white bible' because of its pale cover. We may wish to quietly consider why else they refer to it in religious terms, rather than scientific ones, but I'll leave you to be baffled about that for the moment.</span></p><p><span style="color: #073763; font-family: arial;">OK, so what are we hoping to find in a book about how to improve children's lives?<br />Modern research into child psychology by the great name of modern history, perhaps?<br />Research into relationship, trust, respect, thriving?<br />Basic teaching principles, showing the difference between enforced rote repetition and actual learning?<br />Discussion of Human Rights, autonomy, ethics, & how to avoid adverse effects and long term harms when conducting research into new teaching methods?<br />Discussion of how to ensure disabled and neurodivergent children can rest, play and otherwise enjoy leisure time, without exhaustion.<br />The voices of children throughout, written with caring and respect, being careful to obtain their assent wherever possible, respecting their dignity and privacy?<br /></span><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;">Those are pretty standard things, after all.</span></p><p><span style="color: #073763; font-family: arial;">So, what do we find in this 'white bible'? Published in 2020, so this is new and by a very famous team. These are just a few of my concerns.</span></p><p><span style="color: #073763; font-family: arial;">No discussion of Human Rights, in particular the rights of disabled children to find an identity of their own (rather than have their own identity erased), & the rights for them to enjoy their needed possessions which help them cope and thrive. Yes, those are in the international Human Rights protocols.</span></p><p><span style="color: #073763; font-family: arial;">No discussion of autonomy. Autonomy is about having the right to be your own person and make your own safe choices wherever possible, including the right to choose who is able to use physical contact with you. (Bodily autonomy). One should note from wider research that ABA enthusiasts will use physical contact or force to force a child to comply, including use of unconsented hugs.</span></p><p><span style="color: #073763; font-family: arial;">No discussion of consent or assent (depending on age) from a child or young person. Any consent is sought from a parent/carer. <a href="http://www.crae.org.uk/media/26645/Teenage-booklet-final.pdf">http://www.crae.org.uk/media/26645/Teenage-booklet-final.pdf</a> is a useful guide for young people on their rights, which you may wish to consider, here. Whilst of course parents should offer consent to appropriate care and treatment, it has to be informed consent. Are parents informed of the serious concerns that most autistic people have about ABA, before consenting to it, I wonder?</span></p><p><span style="color: #073763; font-family: arial;">The book describes 'Planned Ignoring'. If an autistic child becomes distressed, crying, during an experiment on them, ABA enthusiasts are told to ignore them completely. Eventually they will give up trying to make their needs known, it explains (paraphrased).</span></p><p><span style="color: #073763; font-family: arial;">I'd like us to stop there for a moment, and let that sink in. Yes, this is the new book on ABA, the 'white bible'. Yes, it's telling its people to ignore a child in distress. Have you heard of 'learned helplessness'? <a href="https://www.verywellmind.com/learned-helplessness-in-children-1066762">https://www.verywellmind.com/learned-helplessness-in-children-1066762</a> is a useful short article on how it can lead to anxiety, depression, complete compliance because there's no point in refusing to do an awful thing, because there is no escape.</span></p><p><span style="color: #073763; font-family: arial;">Onwards... "Terminating specific reinforcer contact". If the child doesn't comply with something on command, take their stuff away until they do. On a closely related matter, look at this:</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN3JLtLlJt1o8ZxZ54cyAcQ-qyF_J1zEsDYXX0QjGX5ULPoKSd78Gl2E2-hCXQSdSGa8DggJrfzz-UiIin2_5h_HX31gp1GwqjX2P2b4uQAW3B6Be_3Vg-Gl1LizPDc4MCx5Fm-LTQ4OEP/s914/Poll+possessions+autism+final+oct+2020.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="A Twitter poll result. Autistic people were asked how they would feel if someone took their most needed possessions away, to enforce them behaving normally. Most said 'traumatised'" border="0" data-original-height="618" data-original-width="914" height="270" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN3JLtLlJt1o8ZxZ54cyAcQ-qyF_J1zEsDYXX0QjGX5ULPoKSd78Gl2E2-hCXQSdSGa8DggJrfzz-UiIin2_5h_HX31gp1GwqjX2P2b4uQAW3B6Be_3Vg-Gl1LizPDc4MCx5Fm-LTQ4OEP/w400-h270/Poll+possessions+autism+final+oct+2020.jpg" width="400" /></a></div><br /><span style="color: #073763; font-family: arial;"><br /></span><p></p><p><span style="color: #073763; font-family: arial;">Above is an informal poll I did on Twitter, which received nearly a thousand votes. Note that most of those responding said that they would be traumatised to have their much needed items used in this way. Now, we can perhaps either say, "So what? Who cares how they feel - the only thing that's important is getting their compliance". Or we can think, "Wait, what? They're doing what? Do they know nothing about how autistic people u</span><span style="color: #073763; font-family: arial;">se personal possessions to focus, to balance, for comfort, as items of spiritual and cultural significance?"</span></p><p><span style="color: #073763; font-family: arial;">There's more. Let's keep going. <br /><br />Page 395 tells people to put a child in a windowless space with nothing to look at or do, if they fail to comply. Sooner or later, they are desperate to get out of there and will do as they are told. Basically, imprison them in solitary confinement, as an autistic child? Is that right? I'm asking that as a question.</span></p><p><span style="color: #073763; font-family: arial;">Turning to wider ABA materials, we're informed by the highly regarded research teams including papers led by Dawson, Fletcher-Watson, Bottema-Beutel & Rodgers, for example. </span><span style="color: #073763; font-family: arial;"><a href="https://journals.sagepub.com/doi/10.1177/13623613211031403">https://journals.sagepub.com/doi/10.1177/13623613211031403</a> is a good starting point for reading. I'll put a snip here. I've marked some of it with bold print.</span></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p><span style="color: #073763; font-family: arial;">"The literature on nonpharmacological early autism interventions has profoundly influenced how autistics are regarded and treated. It underlies the widespread promotion of early interventions as having large and lasting effects on the lives of autistic people. But <b>do these effects include short- and long-term harms</b>? Bottema-Beutel et al. (2020a) investigated this rarely asked question by examining <b>150 early autism intervention group designs</b>. <b>Attention to adverse outcomes was absent in almost all studies</b> and inadequate in the remaining few: 139 (93%) did not even mention or allude to this possibility, 11 (7%) had cursory statements, and <b>none indicated that adverse events were monitored, much less how</b>. Scrutiny of the poorly reported reasons for participant withdrawal and of effect sizes for reported outcomes yielded evidence that harms had occurred, yet were never interpreted as such. </span><span style="color: #073763; font-family: arial;">Bottema-Beutel et al. follow Rodgers et al. (2020), whose<b> systematic review of early intensive applied behavior analysis (ABA)–based autism interventions also found a pervasive failure to consider harms</b>. <b>Nowhere in this highly influential literature was there any reported effort to monitor or collect data on adverse outcomes</b>."</span></p></blockquote><p><span style="color: #073763; font-family: arial;"></span></p><p><span style="color: #073763; font-family: arial;">So, does this 'white bible' mention adverse effects or long term harms from ABA research?<br /><br />I can't find a discussion of this anywhere in the book, which stretches to more than 900 pages in total. <br /><br />Does it even talk about what autism is? Do the authors mention working with autistic specialists?</span></p><p><span style="color: #073763; font-family: arial;">Do the authors talk about neurodiversity, or about the vital work on Double Empathy, Monotropism and other key theories that are revolutionising our understanding of this developmental difference? What about the ground-breaking research of Crompton & team into autistic social communication being effective, but simply different?<br /><br />No, not that I can find in it. </span></p><p><span style="color: #073763; font-family: arial;">I'm not joking.</span></p><p><span style="color: #073763; font-family: arial;">How did this industry manage to convince funders and parents that ABA was the best, the only way, for some of our most vulnerable children and young people?</span></p><p><span style="color: #073763; font-family: arial;">I'll leave you pondering that, whilst modern researchers, teachers and parents continue to make excellent progress by treating autistic individuals of all ages as fellow human beings, worthy of their full rights, and worthy of courtesy, safety, respect and (where possible) collaborative working.<br /><br />Thank you for reading.<br /><br />PS - wanting good alternatives to ABA? Contact groups led by autistic people alongside our allies. They can help direct you to what actually supports autistic individuals, including those with higher support needs (sometimes called 'severe' by some). A good Occupational Therapist and Speech & Language Therapist can help. So can really good modern training on autism as a mainly sensory condition, so that parents understand it's distress behaviour or a brain event, not anger. <a href="http://www.thinkingautismguide.com/2019/05/behaviour-analysis-autistic-way.html">http://www.thinkingautismguide.com/2019/05/behaviour-analysis-autistic-way.html</a> may also be helpful.</span></p><p><span style="color: #073763; font-family: arial;"><br /><br /><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-16520524165392497392021-07-24T01:16:00.003-07:002021-07-24T01:17:23.851-07:00Appropriate Descriptions around Autistic People<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXIFJmOvoeXWk6yuPB1CJmPQXjQ0siaKYw4nyeKF8zNBViFqIAXw0L0WEfavoGhMrO1KK6bNTnkNRO8LczLM_37mcZsyoeZXeNxeHnQfVbIErfypDEGAr17TmBjAEx27XVmsVSWX-DCMNc/s490/crowd+diverse+3.JPG" style="margin-left: 1em; margin-right: 1em;"><img alt="A crowd of diverse people, facing the camera" border="0" data-original-height="132" data-original-width="490" height="108" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXIFJmOvoeXWk6yuPB1CJmPQXjQ0siaKYw4nyeKF8zNBViFqIAXw0L0WEfavoGhMrO1KK6bNTnkNRO8LczLM_37mcZsyoeZXeNxeHnQfVbIErfypDEGAr17TmBjAEx27XVmsVSWX-DCMNc/w400-h108/crowd+diverse+3.JPG" width="400" /></a></div><br /><p></p><p><span style="color: #073763; font-family: arial;">The photograph above shows a typical group of Autistic people.</span></p><p><span style="color: #073763; font-family: arial;">We're one sentence into this blog and I expect a number of people are already shocked. </span></p><p><span style="color: #073763; font-family: arial;">1) The group doesn't look anything like a group of young white males with 'rigid, repetitive' behaviour who 'lack empathy' and are a Deficit & Disorder.</span></p><p><span style="color: #073763; font-family: arial;">2) I used the term Autistic people rather than People With Autism or People with Autism Spectrum Disorder.</span></p><p><span style="color: #073763; font-family: arial;">As regular readers will know, I'm a Professional in this field, working nationally & internationally with Autistic people and their families, with healthcare professionals, and with a range of other groups. I'm also delighted to be trekking through year 4 of Post Graduate academic study. Well, I say 'delighted', but the delight is balanced with concern about the number of times I am told I am a Rigid Repetitive Disordered Deficit in any one day. Yes, I'm Autistic.</span></p><p><span style="color: #073763; font-family: arial;">So is our lovely son.<br /><br />So are most of our lovely friends and colleagues, contacts and fellow Professionals/advisers.<br /><br />Back to that photo. Autistic people are in every walk of life. Every one of them of full worth, whether in paid employment or not. I want to start by making that clear. I also want to make clear that some have a really tough time in life and need excellent support around them, as well as excellent support for their families. </span></p><p><span style="color: #073763; font-family: arial;">The reality is that if you travel through a city for a couple of hours, you'll pass by Autistic older people. Autistic parents. Autistic grandparents. Autistic Accountants. Autistic Doctors. Autistic Faith Leaders. Autistic Teachers. Autistic Artists and Musicians. Autistic people of all kinds, all ethnicities, all IQs.<br /><br />You'll notice that I'm often putting a capital letter in the word Autistic. Same as we do with the Deaf community by capitalising the D.<br /><br />As the Royal College of Psychiatrists wrote in their report (2020), we have found very few of the autistic adults. Why is this? Well...because who on earth would go forward for a diagnosis if the end result was that they were going to be called a Deficient Disordered Burden at the end of it? Even those with a diagnosis are forced into hiding, a lot of the time, thanks to that narrative. Who would recognise that they're autistic, if all the descriptions are white boys who are biting someone (!) or solving equations whilst playing with a train?</span></p><p><span style="color: #073763; font-family: arial;">Excellent support never starts by calling a fellow human being a deficient disordered empathy-lacking burden. </span></p><p><span style="color: #073763; font-family: arial;">Yet that's what we do.<br /><br />It's written in the manuals that these are the 'correct terms', and so we use those terms.</span></p><p><span style="color: #073763; font-family: arial;">The terms do damage. Here's a useful Twitter thread linking to the healthcare papers discussing how stigmatising language gets in the way of support, care and treatment. <a href="https://twitter.com/OT_Expert/status/1418102591423123456">Thread by an Occupational Therapist</a></span></p><p><span style="color: #073763; font-family: arial;">What terms are preferred instead, by the autistic communities? This is a generalisation from research. Always ask for individual preferences.</span></p><p><span style="color: #073763; font-family: arial;"><b>Old term</b>: Autism Spectrum Disorder. <b>New term</b>: Autistic.<br /><br /><b>Old term</b>: "Has autism" <b> New term</b>: "Is Autistic"</span></p><p><span style="color: #073763; font-family: arial;"><b>Old way of describing us</b>: Rigid, repetitive behaviour with outbursts of anger. Obsessive interests.</span></p><p><span style="color: #073763; font-family: arial;"><b>New way of describing us</b>: Autistic people may be concerned about sudden change, as we are protecting our brain's ability to function. Sudden sensory and social change can overwhelm our brains and force us into an unwanted and deeply exhausting brain event. This is either a shutdown where we go still and quiet, or, for some, a meltdown in which we are unable to prevent some wild-looking behaviour. It is linked to epileptiform brain spikes, in recent research. Many of us benefit from the flow of routine, or a passionate interest in a subject, in which we often then specialise as a career or volunteering choice.</span></p><p><span style="color: #073763; font-family: arial;"><b>Old way of describing us</b>: High Functioning, Low Functioning. Mild. Severe.<br /><br /><b>New way of describing us</b>: Some Autistic people are good at 'masking'. Basically, pretending not to be autistic. It's exhausting, demoralising, inauthentic, and leads to autistic burnout, mental health conditions and potentially suicide. This can be mistaken for a 'mild' form of autism. Others cannot mask or do not choose to mask, and they are then described as 'low functioning'. This isn't good. A better way is to describe us as having lower support needs, or higher support needs, but being aware that this isn't static for life. It varies with illness, age or other demands placed on us.</span></p><p><span style="color: #073763; font-family: arial;"><b>Old way of describing us</b>: Lacking in empathy.</span></p><p><span style="color: #073763; font-family: arial;"><b>New way of describing us</b>: Autistic people are often very caring, deeply focused on social justice. As Autistic people have a different social communication system, and often experience a delay in processing emotions, this has been mistaken as a 'lack of empathy'. In reality, nonautistic people are every bit as bad at guessing what we're thinking and feeling, by looking and hearing. This is called 'Double Empathy Theory', and both neurotypes need to learn to speak one another's language. Research on this - see bottom of this blog.</span></p><p><span style="color: #073763; font-family: arial;"><b>Old way of describing us</b>: Antisocial, a loner, 'in their own world'.</span></p><p><span style="color: #073763; font-family: arial;"><b>New way of describing us</b>: Autistic people have the same range of personalities as everyone else. Some are more extravert. Others are more introvert. Most of us will struggle to be in a busy, noisy place for long because of sensory and social overload pushing us into brain events (see above). We also don't use eye contact or facing people to signal love, interest or listening. Our signalling is different, and often involves minimising eye contact, and sitting parallel, not facing. Often we make good friendships with a small number of other autistic people, with whom we share deep interests.</span></p><p><span style="color: #073763; font-family: arial;"><b>Old way of describing us</b>: Lacking in creativity, using rigid and inappropriate methods of play.</span></p><p><span style="color: #073763; font-family: arial;"><b>New way of describing us</b>: Autistic people learn differently, and will focus on specialising on one subject first, before generalising that to others. Many will use objects as part of a needed flow, ritual or relaxation technique, in the same way as some cultures use ceremonies to relax and destress. This may look like lining things up, or using the same movement with a toy over and over. Other people may not detect the slight differences we're tested, or understand why.</span></p><p><span style="color: #073763; font-family: arial;"><b>Old way of describing us</b>: Stereotyped body movements. Stereotypy.</span></p><p><span style="color: #073763; font-family: arial;"><b>New way of describing us</b>: Autistic stimming is often vital for most Autistic people as a way of regulating our brain's processing. It is calming, centring, enables us to find where our body is in three dimensions (proprioception) and leads to a feeling of joy. We may rock, flap, wiggle toes, make a repetitive sound, or (if deep in masking) keep those movements and repetitions so small that others are completely unaware of them). Some use repetitive movement to mark time, or to communicate, or to judge distance. Being clear that if a repetitive movement is actually causing physical harm, of course it must be redirected to a safer alternative. Autistic people generally learn better when allowed to stim.</span></p><p><span style="color: #073763; font-family: arial;"><span>This is just a small selection of different terms, and different ways we now understand autism.</span></span></p><p><span style="color: #073763; font-family: arial;"><span>If you are hoping for the academic references, make your way to <br /><a href="http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html">http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html</a></span></span></p><p><span style="color: #073763; font-family: arial;">If you want to see what thousands of autistic people have been voting for, in informal polls and some surveys, make your way to <br /><a href="https://annsautism.blogspot.com/2020/09/so-what-might-autistic-people-think.html">https://annsautism.blogspot.com/2020/09/so-what-might-autistic-people-think.html</a></span></p><p><span style="color: #073763; font-family: arial;">If you and your team want fabulous, cheery training that truly understands the needs of your organisation, there are so many good groups now offering this. I mention some from time to time, including NDTi, AT-Autism, and the teams working with the Anna Freud Centre. All are used by NHS Professionals for CPD training or other bespoke training, and I'm delighted to work with those groups from time to time. Many other excellent ones exist.</span></p><p><span style="color: #073763; font-family: arial;"><span>Thank you for reading this starting point.</span></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-11560091148782110552021-05-17T11:55:00.002-07:002021-05-17T11:55:29.456-07:00Apparently autistic people should not use headphones to help with noise sensitivity. Really?<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLhS-1_qigdBJzNWcfIU4ymdusE7Erzw1FReQjnLwoDPO47BHRzJSykvPQLzTezD4Hwbz33RJe56UAe9wpuW75_U4cnEdQ-dAOfb-pvt6vq-siqff2JMzkKAIWRyxohs-871IJEHJyox4u/s523/Noise+cancelling+headphones.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="523" data-original-width="468" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLhS-1_qigdBJzNWcfIU4ymdusE7Erzw1FReQjnLwoDPO47BHRzJSykvPQLzTezD4Hwbz33RJe56UAe9wpuW75_U4cnEdQ-dAOfb-pvt6vq-siqff2JMzkKAIWRyxohs-871IJEHJyox4u/w286-h320/Noise+cancelling+headphones.jpg" title="A picture of a pair of noise cancelling headphones" width="286" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">A collaborative team of behaviourists and Psychiatrists wrote a research paper, in 2021. They claimed that an autistic teenager with an intellectual disability should not wear noise cancelling headphones to help with his extreme responses to noise. They believed it simply taught him to escape from the problem. Instead, they said that he should be trained to cope with the noises around him. Their logic was that the young person may go out without their headphones, so must be trained not to respond to distressing noise other than in the mildest of ways. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">They conducted experiments on him, first subjecting him to various loud noises and recording his distressed behaviour, including self harm and sobbing. There did not appear to be mention of ethics, consent, consideration of adverse effects, nor consideration of long-term harms within their paper.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">He did learn to be quiet when subjected to painful noise levels, after some interventions were taught to him.<br />No-one seemed to have asked him whether this was an improvement to his quality of life.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">No-one asked him whether he would have preferred to use noise cancelling headphones, a standard disability adaptation for so many autistic people.<br />No-one seemed to have tested whether this new strategy impacted on his mental health, his ability to focus, or his ability to communicate.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /><br />I ran a poll, on Twitter about the general principle of not using headphones. These are the results.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjPRp05yWvzA-t9JYTvbcNWRZkVv1F7g6dr7hvah6-9JgPmGL82Fpj_l4szMyMYsNNZTPfGJCRdOfLbX_GDNcRxFPJ1gNPenhKjL1rlborCivJIGm_LwYogTZjq6AgStZBZHJ7yak22BPi/s829/Poll+autism+headphones+final+2021.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="A poll from Twitter, showing results. Description in text." border="0" data-original-height="574" data-original-width="829" height="444" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjPRp05yWvzA-t9JYTvbcNWRZkVv1F7g6dr7hvah6-9JgPmGL82Fpj_l4szMyMYsNNZTPfGJCRdOfLbX_GDNcRxFPJ1gNPenhKjL1rlborCivJIGm_LwYogTZjq6AgStZBZHJ7yak22BPi/w640-h444/Poll+autism+headphones+final+2021.jpg" width="640" /></a></div><div class="separator" style="clear: both; text-align: left;"><br /></div><span style="color: #073763; font-family: arial;">The poll asks autistic people whether they believe autistic people should be trained to cope with noise instead of wearing noise cancelling headphones.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">1.5% of the 4693 responses said yes.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">5.2% said not sure/maybe.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">93.3% said no, I do not agree.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">I think that is fairly definitive, in terms of informal polls of social media. One can hardly claim that it is a small number of individuals.<br /><br />A lot of people explained why noise sensitivity is not just a poor coping strategy by us, or an irrational phobia. They explained how noise cancelling headphones may enable functioning, thriving, quality of life, employment, socialisation, friendships.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br />We generally do not tell people to, for example, do without a coat and umbrella in the rain, in order to get them to tolerate being soaking wet when outside.<br /><br />Adaptations exist for a reason. They work.<br /><br />Thank you for reading.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /><br /><span style="color: #073763; font-family: arial;"><br /></span></div><br /><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-37601952744210514452021-03-23T10:08:00.006-07:002021-04-14T06:03:01.965-07:00Most Autistic People Don't Like Curved Walls<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi59-8iysiHQOpVhf2fD5ofOXgCSMZcxDj0iMcE6HYbLrIJjBsK6OQrfojUv_8layd5bfSJre2M5CNZsJi_yCModnn5b47g0m5DtEC_aT-9cH0u8UZqEo5R-35GnpQeCnH1rjoPenEkW0Nb/s733/Poll+autism+walls+straight+curved.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="Image shows a Twitter poll which asks whether autistic people preferred straight or curved walls, inside buildings. A clear majority preferred straight walls. Over 1000 people chose an option." border="0" data-original-height="538" data-original-width="733" height="294" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi59-8iysiHQOpVhf2fD5ofOXgCSMZcxDj0iMcE6HYbLrIJjBsK6OQrfojUv_8layd5bfSJre2M5CNZsJi_yCModnn5b47g0m5DtEC_aT-9cH0u8UZqEo5R-35GnpQeCnH1rjoPenEkW0Nb/w400-h294/Poll+autism+walls+straight+curved.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;">Above, a poll result from Twitter. I'd asked whether autistic people preferred walls that were straight, or curved, inside buildings.<br /><br />As you can see, there were a lot of responses. As some had only asked to 'show results', their answers need to be discounted - but the figures are very clear. About three times as many autistic people prefer straight walls in their buildings, not curved ones. Yes, it's not a scientific randomised sample. But it's huge.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;">Why on earth am I talking to you about walls? Because for the last 15 years or so, people have been told that autistic people like curved walls.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;">How did they know this?<br /><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;">They knew this because someone made a building with curved walls, and observed some autistic children in a particular high-support care setting were putting their hands on the curved wall and following it round. This, they thought, proved that 'autistic people' approve.<br /><br />No it doesn't. I put my hands on a wall when I'm not at all sure how to navigate that space, when I'm disorientated. It's not to say, "Oh what a lovely wall, I prefer this one".<br /><br />So, I looked for formal academic research into this. Research using proper big trials of lots of autistic people, asking them for their views on wall design and making real evaluations of quality of life and accessibility, using provable measures. Autistic people of all levels of support needs. Autistic people of different ages including older autistic people of retirement age. Autistic people from different ethnic minorities. Autistic people of different genders.<br /><br />Nothing.<br /><br />Nothing at all.<br /><br />Well, nothing I can readily find as a researcher, anyway.<br /><br />Yet, everywhere I look, there are documents telling me that autistic people like curved walls.<br /><br />Look at the Twitter thread itself and some of the comments under it. Some autistic people do like curved walls. The majority spoke out very strongly against them.<br /><a href="https://twitter.com/AnnMemmott/status/1374036613953642498"><br />https://twitter.com/AnnMemmott/status/1374036613953642498</a><br /><br />I am glad to be working with groups who are now asking some autistic people what they think about buildings. Who are listening. Who are learning. But we have endless buildings constructed - or being constructed - with these wretched curved walls, with teams all agreeing with each other that the Autistic People Like Curved Walls. That it helps with 'movement' of autistic people. A bit like cattle being herded, perhaps? After all, a well known engineer designed cattle-moving tracks that were curved, to help the cattle move more towards a terrifying end goal. Let's hope that this isn't anything to do with getting autistic children to keep moving towards treatments they don't want, or activities they can't bear.<br /><br />"Perhaps severely autistic people like curved walls and it's only you 'high functioning' autistic people who can vote, so it's just your point of view", some say.<br /><br />Really?<br /><br />So the evidence that autistic people with high support needs would like curved walls is...?<br /><br />And the evidence that people who can vote in a poll would have a totally different viewpoint is....?<br /><br />There isn't any, is there.<br /><br />No research had been done.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;"><br />Ask them. Enable communication. It's not that hard, actually.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;"><br /> I hope the people in these new buildings manage to cope.<br /><br /><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIOrHQFbLON_OSrz3PiPkLVvzyErigzkF1dtlRU6aBfe4s2-uYqVkPVjnB_qr2IKZXNpXqXxqfnVx-78pZkcYocuYvnZ5ufggfTeHUppAZR6HLN6zRK2xivDaU9a5VJfrLdWnMEf-xhoO8/s350/curved+corridor.JPG" style="margin-left: 1em; margin-right: 1em;"><img alt="A curved corridor, one side made of curved glass." border="0" data-original-height="350" data-original-width="234" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIOrHQFbLON_OSrz3PiPkLVvzyErigzkF1dtlRU6aBfe4s2-uYqVkPVjnB_qr2IKZXNpXqXxqfnVx-78pZkcYocuYvnZ5ufggfTeHUppAZR6HLN6zRK2xivDaU9a5VJfrLdWnMEf-xhoO8/w214-h320/curved+corridor.JPG" width="214" /></a></div><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #0b5394; font-family: arial;"><br />Thank you for reading. </span></div><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-9010274323268216142021-01-27T07:35:00.002-08:002021-01-27T08:19:47.384-08:00Problems with ABA. An Easier Guide.<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6TiymRLBuVJ9HS3FRHtsvD1UlFDF8TMHZLSydPNH2KcjXvAcbPiciRKTdH_KoPMXrL01R9s6J0DPva2GWRfCE-tPM1W79sQUkEtVG4VG6hUaPob6YtIObGrj2sue4Ixb9IvDjTbG6kA8X/s1024/woman+child.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="940" data-original-width="1024" height="294" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6TiymRLBuVJ9HS3FRHtsvD1UlFDF8TMHZLSydPNH2KcjXvAcbPiciRKTdH_KoPMXrL01R9s6J0DPva2GWRfCE-tPM1W79sQUkEtVG4VG6hUaPob6YtIObGrj2sue4Ixb9IvDjTbG6kA8X/w320-h294/woman+child.jpg" title="Picture of Victorian woman pointing angrily at a boy sitting on a chair. He is looking at her." width="320" /></a></div><br /><p></p><p><span style="color: #073763; font-family: arial;">Applied Behaviour Analysis is often called ABA.</span></p><p><span style="color: #073763; font-family: arial;">The list below is things that are true for 'pure ABA'. There could be some ABA teams who don't believe some of these things. But this list is what they're supposed to believe.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe that autistic people don't know how to behave.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe that autistic people can't learn by themselves.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe that autistic people don't need the same rights as other people.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe that autistic people can have their things taken away from them, to make them behave better.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe that autistic people can be bribed with sweets and biscuits all day, for hours and hours, to make them behave better.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe autistic people must not flap, or rock, or do any other stims, because it stops us learning stuff. Well, maybe we can flap a bit - but only a tiny bit.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe that autistic people must make eye contact. Even if it hurts us.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe that autistic people must want the same things as everyone else.</span></p><p><span style="color: #073763; font-family: arial;">Some ABA teams believe that Mr Lovaas was a great man. He used to beat children and give them electric shocks. I don't think he was a great man. I think he was a bully.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe they don't need to ask autistic people for their views.</span></p><p><span style="color: #073763; font-family: arial;">ABA teams believe it's not important if autistic people feel sad or angry about having ABA.</span></p><p><span style="color: #073763; font-family: arial;">Some people in Universities think ABA may cause trauma, in some people.<br /><br />Lots of University people have tried to test ABA to find out if it actually works. They can't find any good evidence to show that it works. It seems most autistic children just grow up and learn stuff, like other children. <br /><br />ABA teams are often very rude about other therapists, like speech therapists, or occupational therapists. That's not OK.</span></p><p><span style="color: #073763; font-family: arial;">I don't like ABA.</span></p><p><span style="color: #073763; font-family: arial;">Most autistic people don't like ABA. It has got stuck in the 1980s. This isn't 1980.<br /><br /></span></p><p><span style="color: #073763; font-family: arial;">There are better ways. Autistic people deserve respect. Trust. Caring. Being involved. Being partners, not experiments.</span></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><br /></p><p><span style="color: #073763; font-family: arial;"><br /></span></p><p><br /></p><p><span style="color: #073763; font-family: arial;"><br /></span></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-81357421914451917332021-01-25T12:04:00.002-08:002021-01-25T12:04:16.965-08:00Autism: Late Diagnosis and the Impact of the Scaremongering<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyxN9rOwKSdnlKIzjripO3viaS74YnSOUuAEP8oGiBsHPaGVEVIpf76HPcY_Q_bBRNOaitfGiIcNX8dNZf4pwDGST3GTWukl2R_emwJzfWfPYkyhdMOtjx-EzwRE1tHfnPeFQ2wrbE1DtA/s750/crowd+older+people.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="197" data-original-width="750" height="105" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyxN9rOwKSdnlKIzjripO3viaS74YnSOUuAEP8oGiBsHPaGVEVIpf76HPcY_Q_bBRNOaitfGiIcNX8dNZf4pwDGST3GTWukl2R_emwJzfWfPYkyhdMOtjx-EzwRE1tHfnPeFQ2wrbE1DtA/w400-h105/crowd+older+people.JPG" title="A group of diverse older people" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Late diagnosis, as an autistic person. For me, it has been a good thing, mostly. Those that already cared about me weren't surprised. Those that wanted me to be someone I'm not were bitterly disappointed, and a few wandered off, which is fine. After all, wanting someone to be things-they're-not isn't a good sign in any relationship. <br /><br />But goodness me, that narrative of 'autism as a terrible thing' appears on a regular basis, and it's a destroyer of lives. Stigma kills. It impoverishes. It depresses.<br /><br />Let me give you some examples.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">All the years I was having to hide who I was, as an autistic person and part of the LGBT+ communities, it was exhausting beyond words for me. Every single day, having to 'mask up' in front of so many people. Pretend to be nonautistic. Pretend to be straight. Every expression, every comment, every action and inaction had to be thought, and rehearsed, and goodness me it was like carrying a set of rocks you could never ever put down.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">The diagnosis began that path of me learning who I was, at last. Learning that I could be fully autistic and fully fabulous. Learning to find my own right ways to do things. <br /><br />Learning that 1 in 30 fellow professionals are also autistic, doing such good work in society.<br /><br />Learning from the hundreds of autistic people with whom I share life. Some in care homes, some with learning disabilities, some with no spoken language, some in high paying jobs, others in ordinary jobs, others in low paying jobs, others volunteering, or being parents, or retired, or being a student. Others unable to work for various reasons (including society's prejudice). Every single one of them worth their place on this world. Brilliantly wonderful people.<br /><br />But...<br />For 30 years, I was deemed to be a good businessperson.<br />Until I disclosed that I was rather more diverse than they first knew.<br />And then all of a sudden some believed I was incompetent.<br /><br />For 30 years, I was deemed to be a good pet owner.<br />Until I disclosed that I was rather more diverse than they first knew.<br />And then all of a sudden some believed I was incompetent.<br /><br />There never has to be evidence. Just hysteria and a 1940s mentality.<br /><br />And repeat, for various other roles.<br /><br />Now, luckily in a way, none of this has stood in my way, because I 'came out' at a point where I already had long-established relationships with people who know me and my lovely family well, and where my family were already safe. That was personal privilege, and I'm aware of how many others risk everything they have, if they disclose. Or if they are 'outed'. It's just awful.<br /><br />But goodness me, can we imagine anything sillier than that above scenarios?<br /><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">We threaten everyone who is autistic and hiding, in these ways. We force them to live a half-life, exhausted by the effort of disguising stuff. <br /><br />So many autistic people already competent.<br />We've already proven ourselves.<br /><br />We need society to stop living in the 1940s, stuck reading out the same lines from a medical book, as if it was the very Bible itself, and never once looking up at the lovely autistic people around them.<br /><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Can they choose to raise their eyes and look around them?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br />Can they look at the autistic-led Professional Practices keeping them and their family well, and safe, and informed?<br /><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Can people see the autistic teachers and scholars, skilling up the next generations?<br /><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Can people cherish the autistic spiritual leaders, scientists, musicians, artists, authors and poets, bringing so much to our world? The medics and the philosophers? The craftspeople and the parents?<br /><br />How did we ever get to a point where it became OK to treat this magnificent, diverse, honest, diligent population as if we are all the exact equivalent of a fictional young white boy? Never growing up. Never learning. Never changing. It's just nonsense, isn't it.<br /><br /> </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Embrace diversity. And embrace the marvellous, often empathetic and caring autistic people who don't want to hide any more.<br /><br />Thank you for reading. </span></div><br /><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-63208389409470700952020-12-14T10:11:00.003-08:002020-12-20T03:36:19.598-08:00Autistic Children Respond Differently to Something Scary. Why?<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfVqxWIrWgoT0UZcWlVXY-AgWMsiFtE2DguYmfyjQwDkU4Hzp8ng_M18c5keX_cq34F4dwkbYz4C2SXaJmH65qUZmGPcWBxuHs-BqP407YvU_rGVEN1pDZ-B59HW7Q8zNykN01pLsvsDRi/s769/Panther+V%2526A+collection.PNG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="421" data-original-width="769" height="175" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfVqxWIrWgoT0UZcWlVXY-AgWMsiFtE2DguYmfyjQwDkU4Hzp8ng_M18c5keX_cq34F4dwkbYz4C2SXaJmH65qUZmGPcWBxuHs-BqP407YvU_rGVEN1pDZ-B59HW7Q8zNykN01pLsvsDRi/w320-h175/Panther+V%2526A+collection.PNG" title="A black panther statue" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">Let's imagine we're in a village in a farming community somewhere where there are wild animals that could threaten our community members or their livestock.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">A lot of predators approach at night, very very quietly.<br /><br />What skills would work really well, to spot this and raise the alarm? Or to detect an oncoming forest fire, perhaps?</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">You need a super-spotter. Someone whose eyesight and hearing is very highly tuned for differences and unexpected sounds. Someone who is focused on the surroundings, not on the party going on round the camp fire. Someone with amazing concentration skills. Someone who doesn't overreact instantly whilst they are still gathering data on the threat.<br /><br />And you need a relay person who watches the responses of that person, and conveys their signal back to the camp. Someone who is 'tuned in' to that person's signalling.<br /><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">And you need a party of fit, strong, angry people to drive away the predator.<br /><br />And you need someone to figure out the safest way to keep predators out of barns and enclosures, the best ways to design spears or whatever else to defend children from harm, etc.<br /><br />Teamwork.<br /><br />Autistic individuals often have supersensitive hearing and/or eyesight, and are scanning the horizon, not looking into the eyes of other humans. In fact, we don't often go near loud noisy groups of other humans. We'll stay on the edges, getting away from the distractions. Who will be first to spot the danger, there? We'll also often keep working on improvements in design, long after others would have given up. <br /><br />Villages need all kinds of minds, to work together. Each type is important, whether autistic, other neurodivergence such as ADHD, dyspraxic, dyslexic, or more everyday forms. Each type has its place. No type is 'broken'. The team collaborate to get safety and security.<br /><br />I see a lot of studies that never moved on from the mistake of the 1940s - that autism is a broken version of Real People. That unless we are 'normalised' our lives will be terrible and pointless. Of course some will need support. Some wish for their lives to be different and hope for medical intervention for pain, distress etc, and that's very understandable. But who woke up today and thought, "Hey, I really hope someone describes me as broken, a deficit, a disorder, and imposes an alleged fix on me without even asking me ?" <br /><br />Actually, we are all of equal worth. Every person is a person worth their place in the world. The enforced normalisation of autistic people has generally led to misery, inauthenticity and increased rates of mental health difficulties and suicide. Who was it benefiting? Did people even ask us if we wished to be normalised? Did they even check the Human Rights legislation explaining it is a human right for disabled people to choose to identify as disabled, (thus autistic individuals have every right to identify as autistic)?<br /><br />Autistic people communicate differently. We know this from the recent research. Every bit as effectively. Science had missed this for 80 years. Yes, even the best scientists. Yes, even from the top Universities worldwide. So focused on Deficit that they never even thought to check.<br /><br />The research can be found at <a href="http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html">http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html</a> along with a lot of other useful, modern papers that have changed almost everything we thought we knew about autism.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #073763; font-family: arial;">I see too many teams assuming that difference must equal deficit.<br /><br />I see too many research papers where the discussion doesn't even mention the possibility that there may be a group-wide advantage to some people having a brain that does A instead of B.<br /><br />Think. Move out of this utter allegiance to outdated theories and historic ways of understanding diversity of brains.<br /><br />Ask. Get to know autistic people. Get to collaborate with us as partners, so that you avoid making fundamental errors in your assumptions, methods and conclusions.<br /><br />Be humble. Some people are only alive because an autistic person saved their life. Hearing the approach of a car. Smelling escaping gas from pipes. Spotting a movement in the bushes that no-one else saw.<br /><br />Be curious. Work out why something is like it is.<br /><br />If someone can only see deficit, the deficit is in their own perception.<br /><br />Thank you for reading. </span></div><br /><p></p>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.comtag:blogger.com,1999:blog-7378090564982063188.post-32671581197253947172020-11-27T01:02:00.000-08:002020-11-27T01:02:00.606-08:00Autistic People and 'Theory of Mind'. Brace yourselves.<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbxYhgiA00PJGKm9KOuh_qrn6L2t0Z3erO-ax4_uTGoNkin2MQWRyQOh4UTHlH1dctnGwA4vRR0I-e0KZdQycPd8cQcR0mcW_sQqJS3VmSTdGgczT8qe_xBI1MmkrPDImi8VHZZvBDpgeI/" style="margin-left: 1em; margin-right: 1em;"><img alt="A poll result from Twitter described in this post" data-original-height="532" data-original-width="726" height="293" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbxYhgiA00PJGKm9KOuh_qrn6L2t0Z3erO-ax4_uTGoNkin2MQWRyQOh4UTHlH1dctnGwA4vRR0I-e0KZdQycPd8cQcR0mcW_sQqJS3VmSTdGgczT8qe_xBI1MmkrPDImi8VHZZvBDpgeI/w400-h293/image.png" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">I did some mythbusting on Twitter, as I often do. This question, above, was asking autistic people if they thought others around them were people. For some, it seemed like a very strange question for me to ask. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">But... <br />For many years, autistic people have been told that we have no idea that other people are really people. That we don't know that others have their own thoughts, and their own opinions. That we think everyone else around us is an object of some kind, or maybe a robot.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="color: #20124d; font-family: arial;">Whole industries rose out of that false belief, including an extremist behaviourist group who still have quite a hold over sectors of the health and education service at the moment. Here's a charismatic founder explaining how he viewed us:<br /><br /><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBvlox61RdKdI-mm9Sx6CZkQLdt2OlmmUiB5_0GLldOY1v1G69Tzu4_2DR_pprWZdltE4M4idqIkohv63P3hsIbAaWn-kGOXye9RGHReopYp2pnUP5Ou8iYUeeuxm19px-iniBRO9x9Sj2/s627/Lovaas+quote.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="238" data-original-width="627" height="242" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBvlox61RdKdI-mm9Sx6CZkQLdt2OlmmUiB5_0GLldOY1v1G69Tzu4_2DR_pprWZdltE4M4idqIkohv63P3hsIbAaWn-kGOXye9RGHReopYp2pnUP5Ou8iYUeeuxm19px-iniBRO9x9Sj2/w640-h242/Lovaas+quote.JPG" width="640" /></a></div><br /></div><span style="color: #20124d; font-family: arial;">Lovaas: "You have a person in the physical sense - they have hair, a nose and a mouth - but they are not people in the psychological sense...you have to build the person".<br /><br />Good heavens above. He actually thought this. This is truly shocking, isn't it. Our beloved autistic children...</span><div><span style="color: #20124d; font-family: arial;"><br />That our minds were empty shells, unable to understand others, love, care or anything else.<br /><br />From that belief-set came the extremist approaches, where it didn't much matter if people did appalling things to us - if we weren't really 'people', Human Rights didn't apply to us. And, we still see it now. Those following my Twitter threads on modern research see the results of this appalling misunderstanding in research paper after research paper. Yes, now, in 2020. Paper after relentless paper, treating autistic children as disposable unfeeling robots, ignoring their very real distress.<br /><br />So, what is the truth of the matter? Do autistic people know that other people are indeed people? At the top, the result of a poll I ran on Twitter in November 2020. Yes, it's an informal way of getting answers. Yes, it's only reached whoever saw it on Twitter, so cannot represent every single autistic person. For example, it probably doesn't represent the 2% of autistic people who also have severe or profound learning disabilities and probably aren't on Twitter, but it's a really good thinking point. Just look at the results. Almost every single person responded that yes, of course they know other people are people with their own thoughts and feelings. <a href="https://twitter.com/AnnMemmott/status/1331166576566030336">https://twitter.com/AnnMemmott/status/1331166576566030336</a> is the original poll and the comments below it, for those who are interested.<br /><br />I work in care home settings on a regular basis, as part of review teams. I've worked in the field of autism for two decades. I meet a lot of autistic people with high support needs and learning disabilities, and I've yet to find one who lacked the ability to know that people are people, or who lacked in caring and love for others. Sometimes they show that caring in ways that others don't recognise, because others misinterpret our patterns and communications.<br /><br />The basis of good mental health is "I'm OK, you're OK". The belief that others have valid ways of being, communicating and making decisions, and that we do too. The belief that we are all human beings, entitled to basic human rights, and to our own views and emotions. It's very strange that nonautistic people have decided we're not people, when we are. That we're only allowed emotions that others approve of. Any display of anger at injustice is a 'challenging behaviour' which must be erased, if you're autistic. Which group has problems identifying who is a person, on that basis? Us, or nonautistic people? It's not a rude question to ask. It's an important question.<br /><br />I would suggest that too many autistic people have been treated pretty appallingly for decades, based on ancient nonsense. I wish there was a better word to use for it, but the word 'nonsense' will do. Mostly they'd done experiments about this on autistic children with learning disabilities, rather than on the average autistic adult, for example. What a strange error.</span><div><span style="color: #20124d; font-family: arial;"><br /></span></div><div><span style="color: #20124d; font-family: arial;">How many autistic children have been subjected to traumatic 'therapies' in which they have cried, fought, screamed, begged for it to stop, but the team have been told to 'carry on, because this is like chemotherapy - we are stopping the 'cancer' of autism from claiming this child'. Yes, that's a phrase I've actually had said in hearing range of me. Yes, that's what is being done, and being authorised. There's no polite words to describe that approach. We even have autistic children being given electric shocks if they refuse to obey every instruction. Just search for Judge Rotenberg Center on any good search engine, if you are feeling brave enough. <br /><br />Which people have been behaving like monsters?<br /><br />I put it to society that we are all human.<br />We are all of equal worth.<br />Autistic people communicate and thrive differently.<br />Different is OK.<br /><br />Until we learn to understand one another, and see one another as people of that full worth, we will miss out on so much. We'll miss out on autistic focus, dedication and honesty. We will miss out on autistic integrity, loyalty and humour. We will miss out on autistic creativity, friendship and love.<br /><br />I see all of those things in every autistic person I encounter, because, as an autistic person, I see my people. People who have been relentlessly kind and helpful to me and my family for many, many years, as of course have nonautistic allies.<br /><br />Time to put away the old myths. To realise that both autistic and nonautistic people can share life as their authentic selves. That both groups can learn something about how the other group communicate, and what the other group need. That both groups can learn to coexist, and thrive, together.</span></div><div><span style="color: #20124d; font-family: arial;"><br />Time to look around us, and see how many wonderful autistic people are already in your community, your workplace. To read up on how many volunteer, how many are loving partners, how many give tirelessly to charity or to community. And to acknowledge the worth of every human, whether they do those things or not.</span></div><div><span style="color: #20124d; font-family: arial;"><br /></span></div><div><span style="color: #20124d; font-family: arial;">In a time of pandemic, we all need caring and humanity, eh? Let's offer that, for every person we meet.<br /><br />Thank you for reading.</span></div><div><span style="color: #20124d; font-family: arial;"><br /></span></div><div><span style="color: #20124d; font-family: arial;"><br /></span></div><div><span style="color: #20124d; font-family: arial;"><br /><br /><br /></span><p></p></div></div>Ann Memmotthttp://www.blogger.com/profile/16914711846006849616noreply@blogger.com