Useful New Autism Info for Care Settings

 

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.

https://www.ndti.org.uk/resources/publication/its-not-rocket-science  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.

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 is a commissioned paper from the Local Government Association on how to ensure really good housing for autistic people.  

https://www.waterstones.com/book/avoiding-anxiety-in-autistic-children/luke-beardon/9781529394764  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.

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2306 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'.

https://www.peacepathway.org/ Potentially useful information about autistic people and difficulties with food/eating.

https://www.jpma.org.pk/PdfDownload/10585 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.

Strengths-Based Approaches for Autistic Individuals

 

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.

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.
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.

It's useful to ask people if something helps, isn't it.

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.

A strengths-based approach, building on things we are good at, has an increasing fan base, amongst Professionals as well as autistic people.

There are a lot of good research papers that may help with our thinking.

Here are a few of them:

Strengths-based approaches to preparing for employment

An expert discussion on strengths-based approaches

Children and young people talking about their strengths

Strengths-based approaches to working with autistic people -

Parents and what they say about the strengths of their autistic children

It is an important discussion for all of us to have.

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?

How can their hobbies and interests be a source of relaxation and joy to them, not a thing used by teams to enforce normalisation?

How can we appreciate diversity, and work collaboratively with autistic people to understand autistic culture and communication?

There are so many useful things to keep exploring, and so many more positive outcomes to be discovered.

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.

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.

What is autism? A modern understanding for 2021

What is autism?

We get asked this a lot.

There's been quite a battle going on.  I will generalise:

Group one... 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.

It didn't matter that autism was well described by a woman, years beforehand.  The men got the acclaim for this supposed discovery.

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.

We were too-often experimented upon as if we lacked opinions, feelings, insight, pain responses or human rights. 

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.

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.

Group two... the autistic researchers, academics, specialists and our allies.  The rise of the neurodiversity movement. 

We want human rights for all autistic people.

We want every autistic person to thrive as their own best version of themselves, not a fake copy of someone else.

We appreciate autistic communication as a genuinely different way to socialise with one another.  No, really.  See research links below.

We appreciate the deep focus that autistic people have for their specialist interests, their hobbies and perhaps future careers.

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.

We want every autistic person to have excellent support, whatever their level of support needs.  Truly person-centred.

We want every autistic person to have excellent healthcare, whatever their communication needs.  That worryingly low average age of death has to change.

We want all families to feel supported and valued also.

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.

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.

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. 

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.

A diagnosis should never be a pathway to a locked door, normalisation-enforcement and a daily list of negative words and low expectations.

A diagnosis should be a pathway to thriving and to meaningful access to everyday things, in the same way as others expect.

Time to leave the past where it belongs, and gather round our autistic loved ones with new appreciation, and new hope for the future.

Thank you for reading.




Want more info and  research on the above?  Sure - go to 

http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html 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.

 

Autism is not a look or a behaviour. About enforcing 'Masking'.

 

In the press, news that a team have found a way to give fewer diagnoses to autistic children.

"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).

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.

"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!

OK.  Reality check.  I asked autistic people if they had stopped being autistic, once they learned to do eye contact, waving, etc.

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.

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.

There are so many problems with this allegedly exciting new research, I and other professionals barely know where to begin.

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.

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.  

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 http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

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:  Autistic burnout

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?
Because autism is some terrible thing that needs hiding, is it?
Who says so?

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?

This is recklessness, not triumph.  It's wrecking children's lives.

And it has no place in a modern society.

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.

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 visibly autistic, shock!)  is an act of terrible cruelty, and I suggest that we never, ever do it again.

Thank you for reading.

Autistic people and phone calls

 

There's a lot of misunderstanding about autistic people, and phone calls.

Many autistic people are not always able to speak, or may not be able to speak at all.

Unfortunately, not a lot of people know this.  So there can be major difficulties with people misunderstanding what's happening.

Equally unfortunately, people expect us to use phones reliably.

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.

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.   

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!'

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.

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.

And, if we complain, we're accused of Taking Services Away From People That Really Need Them.

It's just extraordinary.

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.

Thank you for reading.

The new ABA textbook, and why there are serious concerns

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.

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.

Quite often, we are told that ABA is different now.  Better.  Kinder.  We're told that it works.

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 http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html  and details some of them.

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.

OK, so what are we hoping to find in a book about how to improve children's lives?
Modern research into child psychology by the great name of modern history, perhaps?
Research into relationship, trust, respect, thriving?
Basic teaching principles, showing the difference between enforced rote repetition and actual learning?
Discussion of Human Rights, autonomy, ethics, & how to avoid adverse effects and long term harms when conducting research into new teaching methods?
Discussion of how to ensure disabled and neurodivergent children can rest, play and otherwise enjoy leisure time, without exhaustion.
The voices of children throughout, written with caring and respect, being careful to obtain their assent wherever possible, respecting their dignity and privacy?

Those are pretty standard things, after all.

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.

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.

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.

No discussion of consent or assent (depending on age) from a child or young person.  Any consent is sought from a parent/carer. http://www.crae.org.uk/media/26645/Teenage-booklet-final.pdf 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?

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).

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'? https://www.verywellmind.com/learned-helplessness-in-children-1066762 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.

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:

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 use personal possessions to focus, to balance, for comfort, as items of spiritual and cultural significance?"

There's more.  Let's keep going. 

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.

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.  https://journals.sagepub.com/doi/10.1177/13623613211031403 is a good starting point for reading.  I'll put a snip here. I've marked some of it with bold print.

"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 do these effects include short- and long-term harms? Bottema-Beutel et al. (2020a) investigated this rarely asked question by examining 150 early autism intervention group designs. Attention to adverse outcomes was absent in almost all studies and inadequate in the remaining few: 139 (93%) did not even mention or allude to this possibility, 11 (7%) had cursory statements, and none indicated that adverse events were monitored, much less how. 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. Bottema-Beutel et al. follow Rodgers et al. (2020), whose systematic review of early intensive applied behavior analysis (ABA)–based autism interventions also found a pervasive failure to consider harms. Nowhere in this highly influential literature was there any reported effort to monitor or collect data on adverse outcomes."

So, does this 'white bible' mention adverse effects or long term harms from ABA research?

I can't find a discussion of this anywhere in the book, which stretches to more than 900 pages in total. 

Does it even talk about what autism is?  Do the authors mention working with autistic specialists?

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?

No, not that I can find in it.   

I'm not joking.

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?

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.

Thank you for reading.

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.  http://www.thinkingautismguide.com/2019/05/behaviour-analysis-autistic-way.html may also be helpful.

Appropriate Descriptions around Autistic People

 

The photograph above shows a typical group of Autistic people.

We're one sentence into this blog and I expect a number of people are already shocked.  

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.

2) I used the term Autistic people rather than People With Autism or People with Autism Spectrum Disorder.

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.

So is our lovely son.

So are most of our lovely friends and colleagues, contacts and fellow Professionals/advisers.

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.  

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.

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.

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?

Excellent support never starts by calling a fellow human being a deficient disordered empathy-lacking burden. 

Yet that's what we do.

It's written in the manuals that these are the 'correct terms', and so we use those terms.

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.  Thread by an Occupational Therapist

What terms are preferred instead, by the autistic communities?  This is a generalisation from research.  Always ask for individual preferences.

Old term:  Autism Spectrum Disorder.              New term:  Autistic.

Old term:  "Has autism"                                    New term:  "Is Autistic"

Old way of describing us: Rigid, repetitive behaviour with outbursts of anger. Obsessive interests.

New way of describing us:  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.

Old way of describing us:  High Functioning, Low Functioning.  Mild.  Severe.

New way of describing us:  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.

Old way of describing us:  Lacking in empathy.

New way of describing us:  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.

Old way of describing us:  Antisocial, a loner, 'in their own world'.

New way of describing us:  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.

Old way of describing us: Lacking in creativity, using rigid and inappropriate methods of play.

New way of describing us:  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.

Old way of describing us:  Stereotyped body movements.  Stereotypy.

New way of describing us:  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.

This is just a small selection of different terms, and different ways we now understand autism.

If you are hoping for the academic references, make your way to 
http://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html

If you want to see what thousands of autistic people have been voting for, in informal polls and some surveys, make your way to 
https://annsautism.blogspot.com/2020/09/so-what-might-autistic-people-think.html

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.

Thank you for reading this starting point.

Apparently autistic people should not use headphones to help with noise sensitivity. Really?

 

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.  

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.

He did learn to be quiet when subjected to painful noise levels, after some interventions were taught to him.
No-one seemed to have asked him whether this was an improvement to his quality of life.

No-one asked him whether he would have preferred to use noise cancelling headphones, a standard disability adaptation for so many autistic people.
No-one seemed to have tested whether this new strategy impacted on his mental health, his ability to focus, or his ability to communicate.

I ran a poll, on Twitter about the general principle of not using headphones.  These are the results.

The poll asks autistic people whether they believe autistic people should be trained to cope with noise instead of wearing noise cancelling headphones.

1.5% of the 4693 responses said yes.

5.2% said not sure/maybe.

93.3% said no, I do not agree.

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.

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.

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.

Adaptations exist for a reason.  They work.

Thank you for reading.

Most Autistic People Don't Like Curved Walls

 

Above, a poll result from Twitter.  I'd asked whether autistic people preferred walls that were straight, or curved, inside buildings.

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.

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.

How did they know this?

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.

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".

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.

Nothing.

Nothing at all.

Well, nothing I can readily find as a researcher, anyway.

Yet, everywhere I look, there are documents telling me that autistic people like curved walls.

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.

https://twitter.com/AnnMemmott/status/1374036613953642498

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.

"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.

Really?

So the evidence that autistic people with high support needs would like curved walls is...?

And the evidence that people who can vote in a poll would have a totally different viewpoint is....?

There isn't any, is there.

No research had been done.

Ask them.  Enable communication.   It's not that hard, actually.

 I hope the people in these new buildings manage to cope.

Thank you for reading. 

Problems with ABA. An Easier Guide.

 

Applied Behaviour Analysis is often called ABA.

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.

ABA teams believe that autistic people don't know how to behave.

ABA teams believe that autistic people can't learn by themselves.

ABA teams believe that autistic people don't need the same rights as other people.

ABA teams believe that autistic people can have their things taken away from them, to make them behave better.

ABA teams believe that autistic people can be bribed with sweets and biscuits all day, for hours and hours, to make them behave better.

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.

ABA teams believe that autistic people must make eye contact.  Even if it hurts us.

ABA teams believe that autistic people must want the same things as everyone else.

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.

ABA teams believe they don't need to ask autistic people for their views.

ABA teams believe it's not important if autistic people feel sad or angry about having ABA.

Some people in Universities think ABA may cause trauma, in some people.

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.  

ABA teams are often very rude about other therapists, like speech therapists, or occupational therapists. That's not OK.

I don't like ABA.

Most autistic people don't like ABA.  It has got stuck in the 1980s.  This isn't 1980.

There are better ways.  Autistic people deserve respect.  Trust.  Caring.  Being involved.  Being partners, not experiments.

Autism: Late Diagnosis and the Impact of the Scaremongering

 

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.  

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.

Let me give you some examples.

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.

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. 

Learning that 1 in 30 fellow professionals are also autistic, doing such good work in society.

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.

But...
For 30 years, I was deemed to be a good businessperson.
Until I disclosed that I was rather more diverse than they first knew.
And then all of a sudden some believed I was incompetent.

For 30 years, I was deemed to be a good pet owner.
Until I disclosed that I was rather more diverse than they first knew.
And then all of a sudden some believed I was incompetent.

There never has to be evidence.  Just hysteria and a 1940s mentality.

And repeat, for various other roles.

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.

But goodness me, can we imagine anything sillier than that above scenarios?

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.  

So many autistic people already competent.
We've already proven ourselves.

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.

Can they choose to raise their eyes and look around them?

Can they look at the autistic-led Professional Practices keeping them and their family well, and safe, and informed?

Can people see the autistic teachers and scholars, skilling up the next generations?

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?

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.

Embrace diversity.  And embrace the marvellous, often empathetic and caring autistic people who don't want to hide any more.

Thank you for reading.