Updated July 2024
Autism. Here we are, 100 years on from the work of Sukhareva, and 80 years on from the original misunderstandings in the 1940s. So, what's changed, in research? Almost everything.
Firstly, who am I?
I'm autistic, with a fantastic autistic/neurodivergent family.
Four years of Post Graduate study in the field of autism, including a Master's Degree in the topic and an award for the work. http://annsautism.blogspot.com/2023/01/ethics-and-autism-rights-and.html is an informal summary of the work, focusing on whether the alleged 'gold standard' industry for treating autistic people (ABA) appeared to be training its staff on autism, ethics, consent, human rights etc. I take a Critical Autism Studies approach, and am a fan of Indigenist research methods.
I work with major organisations across the country, was Vice Chair of the All Party Parliamentary Group on Autism's Advisory Board, and have more than two decades of professional experience in various roles.
Example commissioned papers and projects:
Local Government Association paper on autistic people and housing
https://www.routledge.com/Improving-Mental-Health-Therapies-for-Autistic-Children-and-Young-People-Promoting-Self-agency-Curiosity-and-Collaboration/Pavlopoulou-Crane-Hurn-Milton/p/book/9781032372525 as a chapter contributor.
Serious work, from and for serious organisations.
I'm passionate about improving the lives of autistic people, and getting excellent training in place for healthcare, education and many other settings. Sometimes I challenge really poor and damaging practice. I'm delighted to promote work like https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/ which is a guide on how to talk about autistic people. It links to a huge amount of research, showing the basis of the excellent advice within it.
Serious work, from and for serious organisations.
I'm passionate about improving the lives of autistic people, and getting excellent training in place for healthcare, education and many other settings. Sometimes I challenge really poor and damaging practice. I'm delighted to promote work like https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/ which is a guide on how to talk about autistic people. It links to a huge amount of research, showing the basis of the excellent advice within it.
So, what's changed, in the world of autism?
Let's start with this lovely thing. https://link.springer.com/article/10.1007/s10803-021-04890-4
In it, the well respected research team asked 153 families about their autistic children and what they're like.
The results? Loving, happy, having a zest for life, caring for others, sense of humour. So many other positives. The researchers noted the growing number of other studies supporting those strengths and positives, including a study of autistic adults and noting open-mindedness, creativity, love of learning, fairness. The links below will also take you to research around honesty, integrity, diligence, empathy, a genuinely different social communication system. Are you confused, because you attended a lecture reading out the myths from the original 1940s version? Welcome to this very important update.
The old 1940s version of autism has turned out to be based on very poor evidence, and deserves a decent burial.
What's it like, trying to grow up in a world that wants to see you as a fault, because that's what two men said, 80 years ago, after looking at a handful of mostly male, white children with profound support needs?
There has been an assumption that autism is just a fault that needs fixing, a 'risk' that some scientist is going to cure with Potion X. A relentless negativity and 'tragic deficit' narrative, day after day, year after year, based on now thoroughly debunked research from decades past. A financial 'burden', despite clear evidence that we haven't even found most autistic adults yet, so we have no idea what they're doing for a living. For all we know, most of them could be comfortably-financed or even rich. We've no idea.
New research is happening around how many autistic people there are. This 2021 study shows a rate of about 1 in 30 boys, for example, in England. Huge study of 7 million children in total. Fewer girls. But there is the strong suggestion in the figures that so many areas of England are missing most of the girls from diagnosis. If we're missing most of them, how do we know what 'autism' is like? No-one's doing research into autistic girls who haven't even been discovered, after all.
Unusual and often extreme behaviourist approaches have arisen, based on those myths, despite the lack of independent evidence of useful outcomes for the individual, or any actual effect on behaviours of concern.
Autism is regarded by many autistic people as a neurodivergence, or indeed a minority people. Certainly a deeply marginalised group who suffer immensely at the hands of some others. Adding that of course some have multiple conditions and require a lot of support, and that proper support that values and respects all autistic people and their families, fully, is much needed.
This is a quick list of some of the research that I value. I will start with important findings that trying to 'fix' autism so that we're more 'normal' doesn't work & leads to potentially very poor outcomes. If you're looking for more general autism research, including the positives, scroll further down.
https://www.youtube.com/watch?v=1ES9Z1xdWiI&t=319s is a strongly recommended seven minutes from Alexis Quinn, about how the 'gold standard' behaviourist approaches do the exact opposite to what's needed, for so many autistic people. Powerful content with mention of self harm and suicide.
One of the big myths is that autistic people have 'obsessive interests' that 'interfere with functioning' and 'must be prevented'. A joy to read this new research on nearly 2000 young autistic individuals, showing that their dedicated interests were a joy to them, rarely interfered, and may lead to useful careers and benefits for them and society. https://link.springer.com/article/10.1007/s10803-020-04743-6 Amongst the most popular focuses of attention, art, music, animals, reading. So much for the myths about us all being computer geeks of limited creativity, eh? Isn't research wonderful.
What about that 'lacks empathy' myth? The Empathy Quotient, the most popular measure of this alleged 'lack' doesn't actually work. I wonder how much damage has been done by using these measures that don't actually measure empathy in any meaningful way? How many autistic people denied diagnoses for caring about others, for example?See https://journals.sagepub.com/doi/abs/10.1177/1073191120964564?journalCode=asma
https://link.springer.com/article/10.1007/s10803-021-05307-y#Sec18 is a 2021 study showing that the 22 autistic adolescent males showed equal empathy to the nonautistic ones.
https://onlinelibrary.wiley.com/doi/10.1002/aur.3197 is yet another study, this one in 2024, showing autistic people have as much empathy as everyone else (but parents misread it).
More on empathy later. Meantime, let's put in the latest lovely findings on criminality. Yes, autistic people were far less likely to be involved in criminal behaviour, it seems from this well respected team and huge study. https://journals.sagepub.com/doi/10.1177/13623613221081343
The incorrect belief that we were empty shells, devoid of caring and with no clue how to 'behave' like proper humans, led to the alleged gold standard of autism handling-techniques, Positive Behaviour Support (PBS). It alleged to stop all that 'challenging behaviour' we show. Things like having a dedicated interest, or moving in ways that weren't approved-of. Anything not-approved-of is termed Challenging Behaviour or a Stereotypy by behaviourist teams, and must be prevented.
https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/clinical-outcomes-of-staff-training-in-positive-behaviour-support-to-reduce-challenging-behaviour-in-adults-with-intellectual-disability-cluster-randomised-controlled-trial/67FB170576C79140E9725DA51525088C
Big research study. 3 yrs. 2018. "Staff training in Positive Behaviour Support... did not reduce challenging behaviour. Further research should... endeavour to identify other interventions that can reduce challenging behaviour."
Oh dear. Next time someone says 'gold standard', refer to the study and ask them what they mean.
Or, this study. 2020. Randomised trial. Big numbers. No evidence that PBS works to improve 'behaviour' for those who are autistic and have a learning disability. Anyone who is paying a fortune to commission this for people needs to have a serious, quiet read, and ask some equally serious, quiet questions of the people selling the stuff to them.
https://bmcpsychiatry.biomedcentral.com/track/pdf/10.1186/s12888-020-02577-1
More? OK... https://www.cochrane.org/CD009260/BEHAV_early-intensive-behavioral-intervention-eibi-increasing-functional-behaviors-and-skills-young
That one is the Cochrane Review. The ultimate independent audit of whether early-interventions such as Applied Behaviour Analysis ('ABA' often now rebranded as Positive Behaviour Support) improve autistic lives. Conclusion - nope, not proven. Weak evidence of vague improvement after two years of effort, which frankly could be achieved by anyone after two years. Children grow up. They learn skills with or without ABA. This is awkward, isn't it.
https://www.ncbi.nlm.nih.gov/pubmed/31763860 is a 2020 paper from the APA in the US. Comprehensive systematic review. In other words, very serious research indeed, to very high standards. It looked at many different kinds of 'treatments' for autism. Including this type of intensive behaviourism. "...when effect estimation was limited to RCT designs and to outcomes for which there was no risk of detection bias, no intervention types showed significant effects on any outcome." In other words, they haven't been shown to work.
More on empathy later. Meantime, let's put in the latest lovely findings on criminality. Yes, autistic people were far less likely to be involved in criminal behaviour, it seems from this well respected team and huge study. https://journals.sagepub.com/doi/10.1177/13623613221081343
The incorrect belief that we were empty shells, devoid of caring and with no clue how to 'behave' like proper humans, led to the alleged gold standard of autism handling-techniques, Positive Behaviour Support (PBS). It alleged to stop all that 'challenging behaviour' we show. Things like having a dedicated interest, or moving in ways that weren't approved-of. Anything not-approved-of is termed Challenging Behaviour or a Stereotypy by behaviourist teams, and must be prevented.
https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/clinical-outcomes-of-staff-training-in-positive-behaviour-support-to-reduce-challenging-behaviour-in-adults-with-intellectual-disability-cluster-randomised-controlled-trial/67FB170576C79140E9725DA51525088C
Big research study. 3 yrs. 2018. "Staff training in Positive Behaviour Support... did not reduce challenging behaviour. Further research should... endeavour to identify other interventions that can reduce challenging behaviour."
Oh dear. Next time someone says 'gold standard', refer to the study and ask them what they mean.
Or, this study. 2020. Randomised trial. Big numbers. No evidence that PBS works to improve 'behaviour' for those who are autistic and have a learning disability. Anyone who is paying a fortune to commission this for people needs to have a serious, quiet read, and ask some equally serious, quiet questions of the people selling the stuff to them.
https://bmcpsychiatry.biomedcentral.com/track/pdf/10.1186/s12888-020-02577-1
More? OK... https://www.cochrane.org/CD009260/BEHAV_early-intensive-behavioral-intervention-eibi-increasing-functional-behaviors-and-skills-young
That one is the Cochrane Review. The ultimate independent audit of whether early-interventions such as Applied Behaviour Analysis ('ABA' often now rebranded as Positive Behaviour Support) improve autistic lives. Conclusion - nope, not proven. Weak evidence of vague improvement after two years of effort, which frankly could be achieved by anyone after two years. Children grow up. They learn skills with or without ABA. This is awkward, isn't it.
https://www.ncbi.nlm.nih.gov/pubmed/31763860 is a 2020 paper from the APA in the US. Comprehensive systematic review. In other words, very serious research indeed, to very high standards. It looked at many different kinds of 'treatments' for autism. Including this type of intensive behaviourism. "...when effect estimation was limited to RCT designs and to outcomes for which there was no risk of detection bias, no intervention types showed significant effects on any outcome." In other words, they haven't been shown to work.
https://jamanetwork.com/journals/jamapediatrics/article-abstract/2819784 is a 2024 paper looking at evidence for intensive interaction. Allegedly, the more a child receives, the better the outcomes. This includes The review team note that there's no particular evidence for this. They also note that few teams bothered to check for harms from their allegedly-vital intensive interventions. So, one might ask why autistic children have had to give up their childhoods in order to do endless exhausting 'intensive' therapies. What will be the short, medium and long terms harms from that?
It's not getting better, is it... on we go...
https://www.altteaching.org/wp-content/uploads/2019/11/TRICARE-Autism-Report.pdf US Military - Department of Defense. Not exactly a group of 'autism activists', eh. Couldn't find much evidence of anything at all happening when ABA was done to children. " ...The majority of TRICARE beneficiaries (76 percent – parent form) had little to no change in symptom presentation over the course of 12 months of ABA services, with an additional nine percent demonstrating worsening symptoms".If you are paying for ABA or PBS 'treatments' for autistic people, it's wise to be aware of this type of Government level research showing that you might as well be buying the children a lollipop (generalising). PS, buying a lollipop is not an actual recommendation, to be clear.
Their 2020 Department of Defense report is no different, at https://therapistndc.org/wp-content/uploads/2020/08/Annual-Report-on-Autism-Care-Demonstration-Program-for-FY-2020.pdf?fbclid=IwAR2VRj3ygZ4nfVsgMY4UNFXn6hxB9kuEGxSlWfx9uwaItEhfsz_NmquhtFo which shows no evidence that ABA is doing anything. If anything, they say, it may shows that the children simply get older and naturally learn some skills, as all children do. Pages 23-24 make bracing reading.
Useful paper from a philosopher and an ethicist about the lack of ethical integrity involved in normalising autistic children to make them fit better into society's structures, at https://muse.jhu.edu/article/753840/pdf?
Autism isn't a disease, so treating autism itself has always made no sense at all. I know this takes some thinking about. But ABA and its pals, always unproven as hypotheses, do worse than a potentially harmless nothing:
https://hennykdotcom.files.wordpress.com/2018/02/aia_evidence-of-increased-ptsd-symptoms-in-autistics-exposed-to-applied-behavior-analysis.pdf
That one is pioneering research around whether behaviour therapies may lead to an increase in trauma symptoms. Initial research. It found a potential link. One of many emerging pieces of research, none of which are a surprise, since ABA requires autistic people to mask being autistic. No different to asking a gay person to mask being gay. Not healthy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061115/
Research in that one shows that too many behaviourists are not checking for underlying mental health conditions before applying behavioural 'therapies' to autistic people. Often also failing to note that the person has PTSD, so thinking it's just autism causing the 'behaviours' and the person is being 'challenging'. As many behaviourists are unqualified in autism or mental health conditions, (let alone the highly specialist interplay of autism and PTSD), hardly surprising. There is clear potential for harm.
Are autistic people more likely to suffer incidents that cause PTSD/cPTSD? Yes. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5980973/ Large numbers are attacked or treated endlessly badly by some non-autistic people. Deeply concerning, isn't it. I wonder which group needs 'behaviour control' the most? The autistic people, or those targeting us?
https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2162 is another study showing how many negative life experiences autistic people endure, and the impact on our health and wellbeing. Perhaps if we sorted out the appalling behaviour of some other people towards us, autistic 'behaviour' (distress) would improve, eh?
https://www.scottishautismconference.org/assets/pdf/Conference_Seminar_Stream_Booklet_170718.pdf
page 23 gives a preview of the research by McGill & Robinson, Lived "Experiences of Applied Behaviour Analysis: Adult Autistic Reflections on Childhood Intervention". Qualitative, so not meant to be huge numbers of people. 13 autistic adults who had ABA as children. 10 found it a mostly negative experience, listing 'removal of autistic self' and 'increased vulnerability', for example.
https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0226-4
The research in that one is worrying, frankly. Cassidy & team noted that if autistic people are having to mask their autism (which most behaviourist approaches teach them to do), their risk of suicide rises. "Camouflaging significantly predicted suicidality in the ASC (autism) group.", to quote the research. Are we normalising autistic children at the later cost of their lives? For whose benefit? I leave the questions there.
https://www.liebertpub.com/doi/full/10.1089/aut.2021.0021 a recent (2021) paper on poor mental health outcomes and burnout from forcing autistic people to live totally inauthentic lives, including links between masking and suicide.
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2774847 another powerful 2021 research paper on how we can avoid suicide, and on how masking is leading to exhaustion & poor outcomes.
IQ: Do a lot of autistic people have a low IQ? No. For example, https://bmjopen.bmj.com/content/9/8/e029040.full is a useful newer paper showing the results from a whole country (Scotland) during 2011. At that point, it was around 1 in 7 autistic children who also have an intellectual disability, and that assumes that they were using the right IQ tests. Arguably, if they used the Raven's IQ tests, they'd find that even fewer had an intellectual disability. https://www.researchgate.net/publication/318470420_Gender-Specific_Differences_in_Autism_Spectrum_Cognitive_Profiles_WIS_vs_Raven is an article about how we've apparently been measuring autistic IQ incorrectly. Every autistic person is of equal worth, being clear.
https://onlinelibrary.wiley.com/doi/abs/10.1111/jcpp.12609 is research on autism and using spoken language. Various myths that huge numbers cannot speak. In this article in a well regarded Journal, 1470 children of around 10 yrs old. 63 of them could not use more than a handful of words. They noted that many of the children had good skill levels in other things. No doubt quite a few can use text, technology of other sorts, sign language etc rather than speech. No doubt some will develop more spoken language at an older age. It's fine not to use spoken language, if that's a person's choice. Certainly every single autistic individual needs to find good ways to communicate somehow, and Speech & Language Therapists are often a good source of help and ideas for this.
Some claim that autistic people who do not use spoken language or a computer keyboard cannot possibly communicate using other methods, e.g. pointing to letters on a board. (AAC)
https://www.nature.com/articles/s41598-020-64553-9?fbclid=IwAR18FIGxt77C65JtUITrNXiqsnMQaSJbzn7gNlRId_oQGEyW5F-toSLWen4 is from the well respected Nature journal, showing that eye tracking technology says yes they can, and do. So when you hear someone say, "This autistic person cannot use spoken words so it's my job to speak for them", check what they mean. If the autistic person has truly delegated authority to them to speak, and explained their views to them using their own methods first, great. If they've decided to speak for them without asking the autistic person, totally not OK (unless a very young child or unconscious/in a coma). Enable communication. If you don't know how, find someone who does. Some specialist Speech & Language Therapists may be useful, for example.
What about other difficulties with speaking, and indeed eating and drinking? Eating disorders and speech/language situations are discussed in this big bit of research (Systematic Review) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533039/ showing that differences in mouth, tongue, sensory system are behind a lot of this. Voice tone can also be affected. Think how many autistic people are accused of being 'rigid' because we can't eat/drink certain things, or 'rude' because we may sound bored or angry. Are mouth differences behind this? Quite possibly - maybe even probably. Rethink assumptions. Work with a good Occupational Therapist and Speech & Language Therapist to decode possible difficulties and sort out solutions.
Why might autistic people be irritable? Research showing that there is a huge sleep deficit for so many autistic people. One example here. If you were tired beyond words, how co-operative would you be? Restless Leg Syndrome is worth checking for as a possible reason, by the way.
https://journals.sagepub.com/doi/abs/10.1177/0883073819836541
https://www.altteaching.org/wp-content/uploads/2019/11/TRICARE-Autism-Report.pdf US Military - Department of Defense. Not exactly a group of 'autism activists', eh. Couldn't find much evidence of anything at all happening when ABA was done to children. " ...The majority of TRICARE beneficiaries (76 percent – parent form) had little to no change in symptom presentation over the course of 12 months of ABA services, with an additional nine percent demonstrating worsening symptoms".If you are paying for ABA or PBS 'treatments' for autistic people, it's wise to be aware of this type of Government level research showing that you might as well be buying the children a lollipop (generalising). PS, buying a lollipop is not an actual recommendation, to be clear.
Their 2020 Department of Defense report is no different, at https://therapistndc.org/wp-content/uploads/2020/08/Annual-Report-on-Autism-Care-Demonstration-Program-for-FY-2020.pdf?fbclid=IwAR2VRj3ygZ4nfVsgMY4UNFXn6hxB9kuEGxSlWfx9uwaItEhfsz_NmquhtFo which shows no evidence that ABA is doing anything. If anything, they say, it may shows that the children simply get older and naturally learn some skills, as all children do. Pages 23-24 make bracing reading.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0270833 is a 2022 studying looking at whether the ABA industry had proven it was worth paying for, in the UK. It had not. It also hadn't produced studies that could be relied on, hadn't done follow-up to find out if the alleged 'improvements' continued, and therefore hadn't looked for long term harms. They could not recommend ABA. They did recommend actually asking some autistic people what helps. Good plan, eh.
https://www.journalslibrary.nihr.ac.uk/hta/hta24350#/abstract Latest paper, 2020. Major review of ABA and similar intensive behaviourist approaches, from the National Institute for Health Research, using a top team. Only one longer term study done on early interventions. That study only had 5 females in it. No clear idea what was done to the children, no control group. The best they could say is that there was limited evidence of something happening, but goodness knows how. And, not one of the studies bothered checking for harm in any serious way. Not one.
https://www.journalslibrary.nihr.ac.uk/hta/hta24350#/abstract Latest paper, 2020. Major review of ABA and similar intensive behaviourist approaches, from the National Institute for Health Research, using a top team. Only one longer term study done on early interventions. That study only had 5 females in it. No clear idea what was done to the children, no control group. The best they could say is that there was limited evidence of something happening, but goodness knows how. And, not one of the studies bothered checking for harm in any serious way. Not one.
https://journals.sagepub.com/doi/10.1177/13623613221142408 is a 2022 paper looking at whether ABA worked for young children, over a period of some years. They found no difference in behaviour between the ones having ABA and related behavioural enforcement, and the ones who didn't. In other words, they might as well not have bothered making the children do ABA.
https://link.springer.com/article/10.1007/s40617-023-00809-w is a 2023 paper in which the authors reveal research from ABA's main team members - Registered Behaviour Technicians. 13% reported receiving no initial training.
29% reported receiving no ongoing training when working with clients who showed distress behaviour.
Most concerning, 36% reported their client sustained some type of injury as a result of ABA with them. This doesn't appear to be reported in standard ABA research. One wonders why not. This is allegedly a 'gold standard' approach. How are those injuries happening, and where is the oversight and ethical scrutiny of this?
29% reported receiving no ongoing training when working with clients who showed distress behaviour.
Most concerning, 36% reported their client sustained some type of injury as a result of ABA with them. This doesn't appear to be reported in standard ABA research. One wonders why not. This is allegedly a 'gold standard' approach. How are those injuries happening, and where is the oversight and ethical scrutiny of this?
https://link.springer.com/article/10.1007/s10864-023-09542-4 is a 2024 paper in which professionals from Occupational Therapy, Psychology, Speech & Language, Teaching, Social Work and other fields talk about trying to work with ABA teams, and what ABA team members were doing. Their commentary is bracing stuff, and I'll let you look for yourselves.
https://journals.sagepub.com/doi/epub/10.1177/13623613221128761 is a 2022 paper which looked at nearly 200 pieces of research into 'interventions' done to autistic young people.
Only 1 in every 100 decided to think about testing for any adverse effects from what they were doing.
None thought to ask the autistic young people.
https://journals.sagepub.com/doi/epub/10.1177/13623613221128761 is a 2022 paper which looked at nearly 200 pieces of research into 'interventions' done to autistic young people.
Only 1 in every 100 decided to think about testing for any adverse effects from what they were doing.
None thought to ask the autistic young people.
The interventions hadn't even been shown to work, thanks to poor research design.
No, you're not misreading this. Why does society think this is a normal way to do research on our loved young people? Discuss. Meantime....
No, you're not misreading this. Why does society think this is a normal way to do research on our loved young people? Discuss. Meantime....
Useful paper from a philosopher and an ethicist about the lack of ethical integrity involved in normalising autistic children to make them fit better into society's structures, at https://muse.jhu.edu/article/753840/pdf?
Autism isn't a disease, so treating autism itself has always made no sense at all. I know this takes some thinking about. But ABA and its pals, always unproven as hypotheses, do worse than a potentially harmless nothing:
https://hennykdotcom.files.wordpress.com/2018/02/aia_evidence-of-increased-ptsd-symptoms-in-autistics-exposed-to-applied-behavior-analysis.pdf
That one is pioneering research around whether behaviour therapies may lead to an increase in trauma symptoms. Initial research. It found a potential link. One of many emerging pieces of research, none of which are a surprise, since ABA requires autistic people to mask being autistic. No different to asking a gay person to mask being gay. Not healthy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061115/
Research in that one shows that too many behaviourists are not checking for underlying mental health conditions before applying behavioural 'therapies' to autistic people. Often also failing to note that the person has PTSD, so thinking it's just autism causing the 'behaviours' and the person is being 'challenging'. As many behaviourists are unqualified in autism or mental health conditions, (let alone the highly specialist interplay of autism and PTSD), hardly surprising. There is clear potential for harm.
Are autistic people more likely to suffer incidents that cause PTSD/cPTSD? Yes. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5980973/ Large numbers are attacked or treated endlessly badly by some non-autistic people. Deeply concerning, isn't it. I wonder which group needs 'behaviour control' the most? The autistic people, or those targeting us?
https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2162 is another study showing how many negative life experiences autistic people endure, and the impact on our health and wellbeing. Perhaps if we sorted out the appalling behaviour of some other people towards us, autistic 'behaviour' (distress) would improve, eh?
https://www.scottishautismconference.org/assets/pdf/Conference_Seminar_Stream_Booklet_170718.pdf
page 23 gives a preview of the research by McGill & Robinson, Lived "Experiences of Applied Behaviour Analysis: Adult Autistic Reflections on Childhood Intervention". Qualitative, so not meant to be huge numbers of people. 13 autistic adults who had ABA as children. 10 found it a mostly negative experience, listing 'removal of autistic self' and 'increased vulnerability', for example.
https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0226-4
The research in that one is worrying, frankly. Cassidy & team noted that if autistic people are having to mask their autism (which most behaviourist approaches teach them to do), their risk of suicide rises. "Camouflaging significantly predicted suicidality in the ASC (autism) group.", to quote the research. Are we normalising autistic children at the later cost of their lives? For whose benefit? I leave the questions there.
https://www.liebertpub.com/doi/full/10.1089/aut.2021.0021 a recent (2021) paper on poor mental health outcomes and burnout from forcing autistic people to live totally inauthentic lives, including links between masking and suicide.
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2774847 another powerful 2021 research paper on how we can avoid suicide, and on how masking is leading to exhaustion & poor outcomes.
IQ: Do a lot of autistic people have a low IQ? No. For example, https://bmjopen.bmj.com/content/9/8/e029040.full is a useful newer paper showing the results from a whole country (Scotland) during 2011. At that point, it was around 1 in 7 autistic children who also have an intellectual disability, and that assumes that they were using the right IQ tests. Arguably, if they used the Raven's IQ tests, they'd find that even fewer had an intellectual disability. https://www.researchgate.net/publication/318470420_Gender-Specific_Differences_in_Autism_Spectrum_Cognitive_Profiles_WIS_vs_Raven is an article about how we've apparently been measuring autistic IQ incorrectly. Every autistic person is of equal worth, being clear.
https://onlinelibrary.wiley.com/doi/abs/10.1111/jcpp.12609 is research on autism and using spoken language. Various myths that huge numbers cannot speak. In this article in a well regarded Journal, 1470 children of around 10 yrs old. 63 of them could not use more than a handful of words. They noted that many of the children had good skill levels in other things. No doubt quite a few can use text, technology of other sorts, sign language etc rather than speech. No doubt some will develop more spoken language at an older age. It's fine not to use spoken language, if that's a person's choice. Certainly every single autistic individual needs to find good ways to communicate somehow, and Speech & Language Therapists are often a good source of help and ideas for this.
Some claim that autistic people who do not use spoken language or a computer keyboard cannot possibly communicate using other methods, e.g. pointing to letters on a board. (AAC)
https://www.nature.com/articles/s41598-020-64553-9?fbclid=IwAR18FIGxt77C65JtUITrNXiqsnMQaSJbzn7gNlRId_oQGEyW5F-toSLWen4 is from the well respected Nature journal, showing that eye tracking technology says yes they can, and do. So when you hear someone say, "This autistic person cannot use spoken words so it's my job to speak for them", check what they mean. If the autistic person has truly delegated authority to them to speak, and explained their views to them using their own methods first, great. If they've decided to speak for them without asking the autistic person, totally not OK (unless a very young child or unconscious/in a coma). Enable communication. If you don't know how, find someone who does. Some specialist Speech & Language Therapists may be useful, for example.
What about other difficulties with speaking, and indeed eating and drinking? Eating disorders and speech/language situations are discussed in this big bit of research (Systematic Review) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533039/ showing that differences in mouth, tongue, sensory system are behind a lot of this. Voice tone can also be affected. Think how many autistic people are accused of being 'rigid' because we can't eat/drink certain things, or 'rude' because we may sound bored or angry. Are mouth differences behind this? Quite possibly - maybe even probably. Rethink assumptions. Work with a good Occupational Therapist and Speech & Language Therapist to decode possible difficulties and sort out solutions.
Why might autistic people be irritable? Research showing that there is a huge sleep deficit for so many autistic people. One example here. If you were tired beyond words, how co-operative would you be? Restless Leg Syndrome is worth checking for as a possible reason, by the way.
https://journals.sagepub.com/doi/abs/10.1177/0883073819836541
A reason for 'behaviour' in schools? Teachers who are aggressive and 'cold' towards autistic children. This research from 2022 shows the clear benefit of autistic children experiencing warm, caring, safe relationships from teachers in schools. Result - the children settle down.
https://www.sciencedirect.com/science/article/pii/S1750946722001143 How often are we told that autistic children must be Controlled and Isolated and Ignored, to create good behaviour? No, those things crush their ability to form good relationships and learn in ways meaningful to them. All human thriving is underpinned by good safe relationships from adults, demonstrating how to build trust and caring. The AT-Autism organisation's Synergy programme is well worth exploring for ways in which schools can retrain their teachers and achieve great results with autistic children. 'Intervene' with the adults in schools, not the child.
Another reason for 'behaviour' - physical pain. New research showing how many autistic people are in chronic pain from various medical commonly co-occurring things including hypermobility, Ehlers Danlos Syndrome. This is an example new study on females who are autistic or have ADHD. More than three-quarters are in chronic pain. So, how does behaviourist enforcement of compliance help someone whose 'behaviour' is actually from being in pain? It doesn't. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6804669/
So, crunching the numbers, only about 6 out of every 100 who voted said no, it's not related to my need to keep my sensory 'input' at the right level. The rest said there either was a definite link, or a possible link. Want to know how many research papers I read which tell me that 'restricted and repetitive behaviours' are nothing to do with sensory needs? Mmm? Too many papers. Far too many. Teams just guess, because they can't imagine that being a reason for them. That's poor science. Why not ask autistic people?
Want a whole paper full of reasons for behaviour resembling trauma symptoms? Griffiths, S., Allison, C., Kenny, R., Holt, R., Smith, P., & Baron‐Cohen, S. (2019). The Vulnerability Experiences Quotient (VEQ): A study of vulnerability, mental health and life satisfaction in autistic adults. Autism Research, 12(10), 1516-1528 https://onlinelibrary.wiley.com/doi/pdf/10.1002/aur.2162
is your starting point. The list and sheer quantity of traumatic experiences autistic people experience is heartbreaking.
https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.2306 April 2020, top team looking at autism and trauma, noting that in their study of 59 autistic people, more than 6 in seem to have had PTSD. The range of traumatic events experienced is pretty horrifying, yet they report that only 1 in 10 autism service providers bothers to check for traumatic events or consider PTSD. I see a lot of providers who never think beyond assigning an incorrect label of 'personality disorder', without ever considering PTSD.
https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00203/full is also useful in terms of autism and crime. Much more likely to be victims. No more likely to be criminal, in this study from the Psychiatry journals, looking at 45 autistic adults in Canada, 2018.
https://www.sciencedirect.com/science/article/pii/S1750946722001143 How often are we told that autistic children must be Controlled and Isolated and Ignored, to create good behaviour? No, those things crush their ability to form good relationships and learn in ways meaningful to them. All human thriving is underpinned by good safe relationships from adults, demonstrating how to build trust and caring. The AT-Autism organisation's Synergy programme is well worth exploring for ways in which schools can retrain their teachers and achieve great results with autistic children. 'Intervene' with the adults in schools, not the child.
Another reason for 'behaviour' - physical pain. New research showing how many autistic people are in chronic pain from various medical commonly co-occurring things including hypermobility, Ehlers Danlos Syndrome. This is an example new study on females who are autistic or have ADHD. More than three-quarters are in chronic pain. So, how does behaviourist enforcement of compliance help someone whose 'behaviour' is actually from being in pain? It doesn't. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6804669/
Another reason for 'behaviour' that involves being anxious about changes in routine? ("Restricted and Repetitive Behaviour" or RRBs). Sensory overwhelm. I ran a Poll on Twitter, as an indicator for this. Here it is:
Want a whole paper full of reasons for behaviour resembling trauma symptoms? Griffiths, S., Allison, C., Kenny, R., Holt, R., Smith, P., & Baron‐Cohen, S. (2019). The Vulnerability Experiences Quotient (VEQ): A study of vulnerability, mental health and life satisfaction in autistic adults. Autism Research, 12(10), 1516-1528 https://onlinelibrary.wiley.com/doi/pdf/10.1002/aur.2162
is your starting point. The list and sheer quantity of traumatic experiences autistic people experience is heartbreaking.
https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.2306 April 2020, top team looking at autism and trauma, noting that in their study of 59 autistic people, more than 6 in seem to have had PTSD. The range of traumatic events experienced is pretty horrifying, yet they report that only 1 in 10 autism service providers bothers to check for traumatic events or consider PTSD. I see a lot of providers who never think beyond assigning an incorrect label of 'personality disorder', without ever considering PTSD.
https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00203/full is also useful in terms of autism and crime. Much more likely to be victims. No more likely to be criminal, in this study from the Psychiatry journals, looking at 45 autistic adults in Canada, 2018.
https://link.springer.com/article/10.1007/s10803-019-04119-5 Another autism and crime paper, noting that "A diagnosis of autism was associated with a decreased risk of committing cyber-dependent crime". Yes, people diagnosed as autistic are less likely to commit cyber-crime.
I'd also strongly recommend Journal of Autism and Developmental Disorders https://doi.org/10.1007/s10803-020-04393-8 for bracing statistics and background on autism and suicide from this top team including Sarah Cassidy. "This study provides evidence that perceptions of burdensomeness, reduced social belonging and exposure to traumatic life events are significantly associated with lifetime suicidality in autistic adults and addressing these is vital to reduce suicide rates. However, this study also highlights the importance of understanding how these feelings are experienced and communicated by autistic people and ensuring that our current measures and clinical practices capture these. This study also highlights the fact that a model of suicidal behaviour that works for autistic people may need to tailored to reflect distinct experiences, communication and social preferences of autistic people. Public policy should urgently address rates of stigmatising and abusive traumatic experiences of autistic people."
Another potential reason for seemingly-aggressive behaviour, epileptiform (electrical) unusual activity in the brain https://link.springer.com/article/10.1007/s10803-019-03908-2
"Aggressive behaviours were observed in all patients with epileptiform abnormalities. Conversely, the 85.7% of patients in the no-EEG abnormalities group did not show aggressive behaviours. Statistical analysis confirmed that the epileptiform abnormalities were correlating with a higher incidence of aggressive behaviour or tantrums (p < 0.01)…..88.8% of patients in the epileptiform abnormalities group were experiencing self-harm behaviour..."
Further research is happening, but this is quite a finding. Could what we think of as 'meltdowns' actually be an electrical storm of some kind, perhaps some unknown form of epilepsy? Could forms of self-harm be related to this? I leave it here for your contemplation. Any point punishing people for any sort of epilepsy-related brain event? Or expecting them to recall what they did, clearly? Or apologise for it? No, indeed not.
What about the meltdown myth? That all autistic people have violent meltdowns? Nope.
Here, I asked the fine autistic people of Twitter, and nearly 900 responded. Not formal research, but interesting. A very clear majority have shutdowns all or most of the time, and very few have meltdowns all or most of the time. So, it looks as if autistic people may be mostly quiet people who retreat into silence and stillness (shutdown) during brain events, not 'violence' (actually a brain event). This is embarrassing, given the past assumptions, eh?
Wait, aren't autistic people more violent, on average? Nope. More peaceful, perhaps. Try this. https://annsautism.blogspot.com/2020/05/autism-and-myths-around-violence.html
Are autistic people more likely to be addicted to alcohol, drugs, internet, etc? No, seems not.
https://twitter.com/AnnMemmott/status/1205476830083502080 is a starting point. All from the last few years, large numbers of people. No particular link to the main addiction areas. Does anyone who is actually addicted to something need the right support? Absolutely.
https://link.springer.com/article/10.1007/s10803-018-3695-6 looks at autistic sensory difficulties, and notes a strong link between sensory hell and anxiety, to the surprise of no autistic person ever. It recommends better sensory environments for us. Good. I had too many people telling me it was 'rare' for autistic people to struggle with sensory difficulties. It may have come from the lack of empathy from non-autistic people that we note in the paper by Dr Damian Milton at https://network.autism.org.uk/knowledge/insight-opinion/double-empathy-problem (Double Empathy theory)
Meantime, here's some other modern papers: Remember we're supposed to believe that autism is all deficit, and that autistic people apply pointless and faulty solutions to their lives...see if you agree by the end...
Better hearing and processing of sound, in some autistic people? Oh yes indeed. Try this one. https://usir.salford.ac.uk/id/eprint/56380/1/Davies_Autistic_Listening_paper_2019_v4.pdf https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945921/ showing autistic children play more fairly with other children.
https://www.sciencedirect.com/science/article/pii/S1750946718300722
In this one, the autistic participants (20 Uni students) were less likely to tell lies for their personal gain than the non-autistic students. (50% rather than 58%, although the researchers didn't like the variation between individuals so decided this wasn't meaningful. A point of view...). This was marked as a fail by the researchers also on Not Giving a Long Enough Explanation As To Why Lying Was Wrong, and - later - suggested we're more honest and more firm with liars because of our rigid rule set and alleged lack of empathy (!). Charming.... Desperation to prove autistic failure is strong, eh. If a non-autistic person says no, that's a 'strong character'. If autistic people say no, it's a 'rigid behaviour', or 'challenging behaviour' Mmm.
https://www.sciencedirect.com/science/article/pii/S0891422218302531
Above, autistic children demonstrated excellent background-scanning abilities in classrooms, pointing to a superior ability to use senses to scan for danger. An evolutionary advantage to have some people in a community who do that, rather than stare at eyeballs much of the time. Much anecdotal evidence from some autistic people of their sensory superiority saving lives, by spotting danger first. First to smell escaped gas or forest fires. First to hear a predator. First to spot a structural weakness. Do some autistic people need ways to tune out oversensitive senses? Absolutely they do. Nevertheless, those senses can save lives.
What about the myths of autistic people being two neat categories, "high functioning" and "low functioning", based on their IQ? Not so. Try this. There is no binary high-low. Everyone has their own description of how they function, based on age, other diagnoses and a host of other factors. Time to drop the harmful high/low labels, which consigned some to being pitied and left to do crayoning in of pictures for life, and others to being hated and denied services for life. Nearly all autistic people are somewhere in the middle of the alleged-extremes.
https://journals.sagepub.com/doi/full/10.1177/1362361319852831
https://www.emerald.com/insight/content/doi/10.1108/AIA-12-2018-0051/full/html Useful and powerful paper discussing autistic people in Black and Asian Minority Ethnic (BAME) communities, and the need to be sensitive to cultural, religious and ethnic factors, as well as the impact of multiple areas of marginalisation & difficulties obtaining diagnosis, especially for girls (thanks to the early myths associating autism with white boys). https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251
Meantime, this new research shows that autistic stimming (repetitive behaviour such as flapping or tapping) doesn't stop exploratory learning. We also know that it helps regulate and calm individuals, and https://link.springer.com/article/10.1007/s11013-018-9590-y is a lovely paper about the purpose and essentiality of autistic stimming. Check those 'behaviour plans'. Unless a stimming behaviour is causing damage to the person or those around them, leave it.
What about Theory of Mind? (The ability to understand that other people have different thoughts and ideas?). After all, for decades we've been told autistic people lack this. Nope. Look at this. 2019. Huge piece of research showing the entire thing was seemingly a series of horrible misunderstandings. https://psycnet.apa.org/fulltext/2019-75285-001.html
Do autistic people have empathy, or (even better ) compassion and general practical caring? Most do, yes. Here's a sample of responses from a large piece of research by Chris Bonnello (2018) which also looked at results for those autistic people who also had learning difficulties, or who also were non-speaking:
Wanting the article itself, featuring the findings from some 11,000 people, of which over 3000 are autistic? https://autisticnotweird.com/2018survey/ Enjoy. So much that dispels myths about autism. Loads of categories of questions here, and our answers.
Want the updated version in 2022 with thousands of answers from autistic people on all kinds of things? https://autisticnotweird.com/autismsurvey/ including results on ABA from those who experienced ABA. Fair to say they were not fans of it.
Dr Damian Milton's Double Empathy work, and many other very useful papers, can be found at https://www.kent.ac.uk/social-policy-sociology-social-research/people/1419/milton-damian
And a personal 'favourite' from 2012 https://www.ncbi.nlm.nih.gov/pubmed/22958506 in which autistic people were shown to give a good amount to people-related charities ... and the researchers actually presented the data in ways that suggested autistic people didn't give much to people-related charities, thus could be said to not care about people. Extraordinary, and clearly the opposite of the actual findings. Let's assume that was an error, yes? <noting that an anti-autism group funded the study...>
https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2130 shows that autistic people tend to share out money more fairly than others, freed from the social bias that leads others to make unfair decisions because they feel a social tie to another person.
https://collabra.org/articles/10.1525/collabra.271/ a 2020 paper showing that people with higher autism scores still do as much to help others.
https://psyarxiv.com/n2mt5/ a useful 2022 paper on autistic strengths, showing, "... autistic adults were more generous than neurotypical participants, especially to socially distant others, such as strangers... Additionally, we extend previous work showing that autistic individuals are less susceptible to framing effects – whether monetary decisions are framed as potential losses or gains – supporting the view of ‘enhanced rationality’ in autism. Our results show that the differences seen in autism, as well as posing certain challenges, can also have prosocial consequences."
Meantime, brilliant new research from Crompton & team showing that autistic people genuinely do speak a different social language, and work very well with other autistic people, collaborating and sharing. The problems happen when there's one autistic person and one non-autistic person trying to collaborate, because both misunderstand one another. http://dart.ed.ac.uk/research/nd-iq/
Here's another, showing that same observation that actually we communicate just fine with one another. It appears to be a horrible misunderstanding between neurotypes, not a 'deficit' on our part.
https://macsphere.mcmaster.ca/bitstream/11375/25433/2/Salt_Mackenzie_2019April_PhD.pdf
Here's another showing that autistic people communicate well with one another and enjoy one another's company (generalising of course) at https://journals.sagepub.com/doi/abs/10.1177/1362361320924906?journalCode=auta
Another? Sure. Here's a big one from 2020. Same findings - autistic people get on fine with each other (generalising). It's looking really bad for that 'they have social deficits' stuff, isn't it. https://www.frontiersin.org/articles/10.3389/fpsyg.2020.586171/full
Not enough papers yet on autistic social strengths? Have another: https://osf.io/preprints/osf/efvbc Yes, here we are again, with autistic people thriving in each others' company and enjoying their communication together (generalising). So, where is this deficit? Challenge DSM-5, please. Dare to look at new evidence rather than ancient beliefs. It's what research is supposed to be for.
Remind me why we are forced to abandon what works for us? https://www.liebertpub.com/doi/pdf/10.1089/aut.2018.0035 A paper about autistic strengths.
Whereas https://www.tameri.com/wordpress/autisticme/2018/01/13/autistics-make-others-uncomfortable-instantly/ is around how many non-autistic people form pretty instant unfair negative judgements about autistic people, the moment they meet us, even before we say or do anything. That's not an 'autism fault'. That there is a non-autistic fault.
What about those specialised, focused interests that have been described as 'obsessions' and allegedly to be prevented? https://tandfonline.com/doi/full/10.1080/00131911.2019.1566213 is one of a variety of papers explaining that many autistic children use those specialist subjects as a way to learn, to thrive. They are essential tools for many of us.
Here's one showing that autistic people are on average better at predicting social psychological phenomena. https://medicalxpress.com/news/2019-09-autism-good-social-psychologists.html
Face recognition difficulties (prosopagnosia or face-blindness): "The autistic group showed significant evidence of face recognition difficulties" from this study on face recognition So, not necessarily ignoring you or being 'cold'. Perhaps they don't realise it's you?
https://www.repository.cam.ac.uk/handle/1810/306126 likewise, more than a third of the autistic people in the study had difficulties identifying people from their faces. It's normally about 1 in 40 people with that difficulty.
What of gender and sexuality? Hugely varied.
http://dro.deakin.edu.au/eserv/DU:30089386/george-sexualorientation-2016A.pdf may be helpful in terms of background on sexual orientation, from Dr Rita George. Other papers listed in there from both George & Stokes.
These are just a few examples of research papers showing positives, and showing autistic people to be generally good, honest, caring citizens, speaking a different (not broken) social language, and learning from specialised focus. But greatly at risk from some non-autistic people. And greatly at risk from inappropriate application of therapies that fail to take account of autistic reality, gender, sexuality, ages, personalities, communication methods, motives, PTSD, other co-occurring conditions and needs.
Here we are as we enter the 2020s. Time to move on from the dreadful language of the 1940s and 1950s, with its misunderstandings, negativity, scaremongering and desperation to control people for being different.
I'd like to see more researchers starting from that good grounding of 'what are autistic people actually like', and working with us, rather than against us. We have fantastic work being done by PARC, for example, and Autscape.
https://participatoryautismresearch.wordpress.com/about/ and http://www.autscape.org/ are your links.
Read positive, modern materials such as Autism and Asperger Syndrome in Adults, by Dr Luke Beardon, or its companion book about children.
Nearly all do not want a cure. This, the results from asking a huge number of autistic people who are non-speaking, or have a learning disability. (Autistic Not Weird website - link above). If you think we're a 'tragedy', ask yourself why the vast majority are happy being autistic.
https://www.liebertpub.com/doi/10.1089/aut.2020.0014?fbclid=IwAR2kokur4miUxHGtQ0vrEiT5D8Akoxy8k3-OlFcMTRttpo2pE-TGI_2uSQU& is a very good article about not using ableist, negative language about autistic people, and which respectful terms are appropriate.
The work I do in teams with organisations is largely about changing the attitudes of the people around us, whilst improving the self esteem of the autistic people. It proves very successful. Families looking for those things, and good support from a specialist speech and language therapist/Occupational Therapist, if needed, will be likely to find many joys ahead. One of the most important factors in a positive attitude? Finding out about autism from autistic people. Not from people making a living out of normalising us.
Go communicate with the people involved, finding plenty more autism-positive materials, and ways that actually help autistic people. Ways involving respect, responsibility, collaboration, partnership and shared journeying together.
Thank you for reading.
I'd also strongly recommend Journal of Autism and Developmental Disorders https://doi.org/10.1007/s10803-020-04393-8 for bracing statistics and background on autism and suicide from this top team including Sarah Cassidy. "This study provides evidence that perceptions of burdensomeness, reduced social belonging and exposure to traumatic life events are significantly associated with lifetime suicidality in autistic adults and addressing these is vital to reduce suicide rates. However, this study also highlights the importance of understanding how these feelings are experienced and communicated by autistic people and ensuring that our current measures and clinical practices capture these. This study also highlights the fact that a model of suicidal behaviour that works for autistic people may need to tailored to reflect distinct experiences, communication and social preferences of autistic people. Public policy should urgently address rates of stigmatising and abusive traumatic experiences of autistic people."
Another potential reason for seemingly-aggressive behaviour, epileptiform (electrical) unusual activity in the brain https://link.springer.com/article/10.1007/s10803-019-03908-2
"Aggressive behaviours were observed in all patients with epileptiform abnormalities. Conversely, the 85.7% of patients in the no-EEG abnormalities group did not show aggressive behaviours. Statistical analysis confirmed that the epileptiform abnormalities were correlating with a higher incidence of aggressive behaviour or tantrums (p < 0.01)…..88.8% of patients in the epileptiform abnormalities group were experiencing self-harm behaviour..."
Further research is happening, but this is quite a finding. Could what we think of as 'meltdowns' actually be an electrical storm of some kind, perhaps some unknown form of epilepsy? Could forms of self-harm be related to this? I leave it here for your contemplation. Any point punishing people for any sort of epilepsy-related brain event? Or expecting them to recall what they did, clearly? Or apologise for it? No, indeed not.
Here, I asked the fine autistic people of Twitter, and nearly 900 responded. Not formal research, but interesting. A very clear majority have shutdowns all or most of the time, and very few have meltdowns all or most of the time. So, it looks as if autistic people may be mostly quiet people who retreat into silence and stillness (shutdown) during brain events, not 'violence' (actually a brain event). This is embarrassing, given the past assumptions, eh?
Wait, aren't autistic people more violent, on average? Nope. More peaceful, perhaps. Try this. https://annsautism.blogspot.com/2020/05/autism-and-myths-around-violence.html
Are autistic people more likely to be addicted to alcohol, drugs, internet, etc? No, seems not.
https://twitter.com/AnnMemmott/status/1205476830083502080 is a starting point. All from the last few years, large numbers of people. No particular link to the main addiction areas. Does anyone who is actually addicted to something need the right support? Absolutely.
https://link.springer.com/article/10.1007/s10803-018-3695-6 looks at autistic sensory difficulties, and notes a strong link between sensory hell and anxiety, to the surprise of no autistic person ever. It recommends better sensory environments for us. Good. I had too many people telling me it was 'rare' for autistic people to struggle with sensory difficulties. It may have come from the lack of empathy from non-autistic people that we note in the paper by Dr Damian Milton at https://network.autism.org.uk/knowledge/insight-opinion/double-empathy-problem (Double Empathy theory)
Meantime, here's some other modern papers: Remember we're supposed to believe that autism is all deficit, and that autistic people apply pointless and faulty solutions to their lives...see if you agree by the end...
Better hearing and processing of sound, in some autistic people? Oh yes indeed. Try this one. https://usir.salford.ac.uk/id/eprint/56380/1/Davies_Autistic_Listening_paper_2019_v4.pdf https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945921/ showing autistic children play more fairly with other children.
https://www.sciencedirect.com/science/article/pii/S1750946718300722
In this one, the autistic participants (20 Uni students) were less likely to tell lies for their personal gain than the non-autistic students. (50% rather than 58%, although the researchers didn't like the variation between individuals so decided this wasn't meaningful. A point of view...). This was marked as a fail by the researchers also on Not Giving a Long Enough Explanation As To Why Lying Was Wrong, and - later - suggested we're more honest and more firm with liars because of our rigid rule set and alleged lack of empathy (!). Charming.... Desperation to prove autistic failure is strong, eh. If a non-autistic person says no, that's a 'strong character'. If autistic people say no, it's a 'rigid behaviour', or 'challenging behaviour' Mmm.
https://www.sciencedirect.com/science/article/pii/S0891422218302531
Above, autistic children demonstrated excellent background-scanning abilities in classrooms, pointing to a superior ability to use senses to scan for danger. An evolutionary advantage to have some people in a community who do that, rather than stare at eyeballs much of the time. Much anecdotal evidence from some autistic people of their sensory superiority saving lives, by spotting danger first. First to smell escaped gas or forest fires. First to hear a predator. First to spot a structural weakness. Do some autistic people need ways to tune out oversensitive senses? Absolutely they do. Nevertheless, those senses can save lives.
What about the myths of autistic people being two neat categories, "high functioning" and "low functioning", based on their IQ? Not so. Try this. There is no binary high-low. Everyone has their own description of how they function, based on age, other diagnoses and a host of other factors. Time to drop the harmful high/low labels, which consigned some to being pitied and left to do crayoning in of pictures for life, and others to being hated and denied services for life. Nearly all autistic people are somewhere in the middle of the alleged-extremes.
https://journals.sagepub.com/doi/full/10.1177/1362361319852831
https://www.emerald.com/insight/content/doi/10.1108/AIA-12-2018-0051/full/html Useful and powerful paper discussing autistic people in Black and Asian Minority Ethnic (BAME) communities, and the need to be sensitive to cultural, religious and ethnic factors, as well as the impact of multiple areas of marginalisation & difficulties obtaining diagnosis, especially for girls (thanks to the early myths associating autism with white boys). https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251
Meantime, this new research shows that autistic stimming (repetitive behaviour such as flapping or tapping) doesn't stop exploratory learning. We also know that it helps regulate and calm individuals, and https://link.springer.com/article/10.1007/s11013-018-9590-y is a lovely paper about the purpose and essentiality of autistic stimming. Check those 'behaviour plans'. Unless a stimming behaviour is causing damage to the person or those around them, leave it.
What about Theory of Mind? (The ability to understand that other people have different thoughts and ideas?). After all, for decades we've been told autistic people lack this. Nope. Look at this. 2019. Huge piece of research showing the entire thing was seemingly a series of horrible misunderstandings. https://psycnet.apa.org/fulltext/2019-75285-001.html
Do autistic people have empathy, or (even better ) compassion and general practical caring? Most do, yes. Here's a sample of responses from a large piece of research by Chris Bonnello (2018) which also looked at results for those autistic people who also had learning difficulties, or who also were non-speaking:
Wanting the article itself, featuring the findings from some 11,000 people, of which over 3000 are autistic? https://autisticnotweird.com/2018survey/ Enjoy. So much that dispels myths about autism. Loads of categories of questions here, and our answers.
Want the updated version in 2022 with thousands of answers from autistic people on all kinds of things? https://autisticnotweird.com/autismsurvey/ including results on ABA from those who experienced ABA. Fair to say they were not fans of it.
Dr Damian Milton's Double Empathy work, and many other very useful papers, can be found at https://www.kent.ac.uk/social-policy-sociology-social-research/people/1419/milton-damian
And a personal 'favourite' from 2012 https://www.ncbi.nlm.nih.gov/pubmed/22958506 in which autistic people were shown to give a good amount to people-related charities ... and the researchers actually presented the data in ways that suggested autistic people didn't give much to people-related charities, thus could be said to not care about people. Extraordinary, and clearly the opposite of the actual findings. Let's assume that was an error, yes? <noting that an anti-autism group funded the study...>
https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2130 shows that autistic people tend to share out money more fairly than others, freed from the social bias that leads others to make unfair decisions because they feel a social tie to another person.
https://collabra.org/articles/10.1525/collabra.271/ a 2020 paper showing that people with higher autism scores still do as much to help others.
https://psyarxiv.com/n2mt5/ a useful 2022 paper on autistic strengths, showing, "... autistic adults were more generous than neurotypical participants, especially to socially distant others, such as strangers... Additionally, we extend previous work showing that autistic individuals are less susceptible to framing effects – whether monetary decisions are framed as potential losses or gains – supporting the view of ‘enhanced rationality’ in autism. Our results show that the differences seen in autism, as well as posing certain challenges, can also have prosocial consequences."
Meantime, brilliant new research from Crompton & team showing that autistic people genuinely do speak a different social language, and work very well with other autistic people, collaborating and sharing. The problems happen when there's one autistic person and one non-autistic person trying to collaborate, because both misunderstand one another. http://dart.ed.ac.uk/research/nd-iq/
Here's another, showing that same observation that actually we communicate just fine with one another. It appears to be a horrible misunderstanding between neurotypes, not a 'deficit' on our part.
https://macsphere.mcmaster.ca/bitstream/11375/25433/2/Salt_Mackenzie_2019April_PhD.pdf
Here's another showing that autistic people communicate well with one another and enjoy one another's company (generalising of course) at https://journals.sagepub.com/doi/abs/10.1177/1362361320924906?journalCode=auta
Another? Sure. Here's a big one from 2020. Same findings - autistic people get on fine with each other (generalising). It's looking really bad for that 'they have social deficits' stuff, isn't it. https://www.frontiersin.org/articles/10.3389/fpsyg.2020.586171/full
Not enough papers yet on autistic social strengths? Have another: https://osf.io/preprints/osf/efvbc Yes, here we are again, with autistic people thriving in each others' company and enjoying their communication together (generalising). So, where is this deficit? Challenge DSM-5, please. Dare to look at new evidence rather than ancient beliefs. It's what research is supposed to be for.
Remind me why we are forced to abandon what works for us? https://www.liebertpub.com/doi/pdf/10.1089/aut.2018.0035 A paper about autistic strengths.
Whereas https://www.tameri.com/wordpress/autisticme/2018/01/13/autistics-make-others-uncomfortable-instantly/ is around how many non-autistic people form pretty instant unfair negative judgements about autistic people, the moment they meet us, even before we say or do anything. That's not an 'autism fault'. That there is a non-autistic fault.
What about those specialised, focused interests that have been described as 'obsessions' and allegedly to be prevented? https://tandfonline.com/doi/full/10.1080/00131911.2019.1566213 is one of a variety of papers explaining that many autistic children use those specialist subjects as a way to learn, to thrive. They are essential tools for many of us.
Here's one showing that autistic people are on average better at predicting social psychological phenomena. https://medicalxpress.com/news/2019-09-autism-good-social-psychologists.html
Face recognition difficulties (prosopagnosia or face-blindness): "The autistic group showed significant evidence of face recognition difficulties" from this study on face recognition So, not necessarily ignoring you or being 'cold'. Perhaps they don't realise it's you?
https://www.repository.cam.ac.uk/handle/1810/306126 likewise, more than a third of the autistic people in the study had difficulties identifying people from their faces. It's normally about 1 in 40 people with that difficulty.
What of gender and sexuality? Hugely varied.
http://dro.deakin.edu.au/eserv/DU:30089386/george-sexualorientation-2016A.pdf may be helpful in terms of background on sexual orientation, from Dr Rita George. Other papers listed in there from both George & Stokes.
Important paper from this team on the impact on multiple areas of marginalisation, for autistic people. What if you're part of the LGBT+ and autistic communities? Ashleigh Hillier, Nicholas
Gallop, Eva Mendes, Dylan Tellez, Abigail Buckingham, Afreen Nizami & Derek OToole (2019) LGBTQ + and
autism spectrum disorder: Experiences and challenges, International
Journal of Transgenderism,
These are just a few examples of research papers showing positives, and showing autistic people to be generally good, honest, caring citizens, speaking a different (not broken) social language, and learning from specialised focus. But greatly at risk from some non-autistic people. And greatly at risk from inappropriate application of therapies that fail to take account of autistic reality, gender, sexuality, ages, personalities, communication methods, motives, PTSD, other co-occurring conditions and needs.
Here we are as we enter the 2020s. Time to move on from the dreadful language of the 1940s and 1950s, with its misunderstandings, negativity, scaremongering and desperation to control people for being different.
I'd like to see more researchers starting from that good grounding of 'what are autistic people actually like', and working with us, rather than against us. We have fantastic work being done by PARC, for example, and Autscape.
https://participatoryautismresearch.wordpress.com/about/ and http://www.autscape.org/ are your links.
Read positive, modern materials such as Autism and Asperger Syndrome in Adults, by Dr Luke Beardon, or its companion book about children.
Nearly all do not want a cure. This, the results from asking a huge number of autistic people who are non-speaking, or have a learning disability. (Autistic Not Weird website - link above). If you think we're a 'tragedy', ask yourself why the vast majority are happy being autistic.
https://www.liebertpub.com/doi/10.1089/aut.2020.0014?fbclid=IwAR2kokur4miUxHGtQ0vrEiT5D8Akoxy8k3-OlFcMTRttpo2pE-TGI_2uSQU& is a very good article about not using ableist, negative language about autistic people, and which respectful terms are appropriate.
The work I do in teams with organisations is largely about changing the attitudes of the people around us, whilst improving the self esteem of the autistic people. It proves very successful. Families looking for those things, and good support from a specialist speech and language therapist/Occupational Therapist, if needed, will be likely to find many joys ahead. One of the most important factors in a positive attitude? Finding out about autism from autistic people. Not from people making a living out of normalising us.
Go communicate with the people involved, finding plenty more autism-positive materials, and ways that actually help autistic people. Ways involving respect, responsibility, collaboration, partnership and shared journeying together.
Thank you for reading.
