Friday, 11 January 2019
Autism: Some Vital Research Links.
Too many autistic people have had a terrible time, for many decades. For some, high rates of depression, anxiety. Low life expectancy (mid 50s, on average). Nine times greater risk of ending their own lives if left to struggle. It's not a mental health condition. These things are not 'part' of autism. So what's on earth's gone wrong, we ask?
There has been an assumption that autism is invariably a fault that needs fixing. A relentless negativity and 'tragic deficit' narrative, day after day, year after year, based on now thoroughly debunked research from decades past. Unusual behaviourist approaches have arisen, based on those myths.
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:
https://myownfrontdoor.net/reservations-re-positive-behaviour-support/ Dr Dinah Murray, discussion the absence of useful evidence that much of the modern form of 'positive behaviour support' is in fact any such thing...and the worrying reality that restraint & seclusion seem to be increasing, not decreasing, after the roll-out of this behaviourist approach.
That one is the Cochrane Review. The ultimate independent audit of whether early-interventions such as Applied Behaviour Analysis 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. No evidence that it improves 'problem behaviour'. Embarrassing, isn't it.
That one is pioneering research around whether behaviour therapies may lead to an increase in trauma symptoms. Initial research. It found a potential link.
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/ Huge numbers are attacked or treated endlessly badly by some non-autistic people. Deeply concerning, isn't it. I wonder which groups needs 'behaviour control' the most?
page 23 gives a preview of the research by McGill & Robinson, being published soon. 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? I leave the question 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 been measuring autistic IQ incorrectly.
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/
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.
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 autistic people apply pointless and faulty solutions to their differences...see if you agree by the end...
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.
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.
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 consighed some to being pitied and left to do crayoning in of pictures for life and others to being hated and denied services for life.
Meantime, this new research shows that autistic stimming (repetitive behaviour) 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.
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?
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.
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
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
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, communication methods, motives and need.
Here we are in 2019. Time to move on from the dreadful language of the 1940s and 1950s, with its negativity.
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.
The work I do in teams with organisations like AT-Autism, NDTi and other national teams 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.
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.