Autism. Nearly 80 years on from the original misunderstandings in the 1940s. So, what's changed, in research? Almost everything.
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. 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, not a fault. Although 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.
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.
The incorrect belief that everything about autism is Wrong 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. But, did that work? Let's find out.
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 serious, quiet questions of the people selling the stuff to them.
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. 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. 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.
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.
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:
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.
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?
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.
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.
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.
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.
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/
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.
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.
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.
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://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.
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.
Meantime, brilliant new research showing that autistic people genuinely do speak a different social language, and work fabulously 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. https://infogram.com/diversity-in-social-intelligence-participant-summary-1hnq41ppmyvk43z?live
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.
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
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.