Friday, 11 January 2019

Autism: Some Vital Research Links.

A black and white photo of an historic library showing towering bookcases of old books, with a man finding one.

Many autistic people have had a terrible time, for many decades.  Why?  Because of the assumption that autism is a fault that needs fixing.  We see that assumption still happening in some research.  We also see some very strange ideas about how to 'fix' this alleged 'fault', including the push to put all autistic children through forms of behaviour therapy.  Positive Behaviour Support.  Applied Behaviour Analysis.  Well, those two are now basically the same thing. http://annsautism.blogspot.com/2017/04/autism-aba-and-pbs-some-questions.html may be helpful if you want to reflect on that.

We don't hear much about autistic reality from those research papers.  We also don't hear much about the recent concerns about the the Behaviour Therapy programs.  Especially given that autism is now regarded by many autistic people as a neurodiversity,  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 autistic people fully is much needed.

This is a quick list of some of the research that I value:


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 lead to an increase in trauma symptoms.  Initial research.  It found a link.  More research is happening on this.

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 behavoural '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 entirely 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?  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?


https://www.scottishautismconference.org/assets/pdf/Conference_Seminar_Stream_Booklet_170718.pdf
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.

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 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.

Meantime, here's some positive papers:


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.  This was still marked as a fail by the researchers, of course, who failed them on Not Giving a Long Enough Explanation As To Why.  Desperation to prove autistic failure is strong, eh.

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.

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209251

Meantime, this new research shows that autistic stimming (repetitive behaviour) doesn't stop 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?  Most do, yes.  Here's a sample of responses from a large piece of research by Chris Bonnello (2018) which looked at results for those who also had learning difficulties, or who also were non-speaking:




Wanting the article itself, featuring the fabulous findings from some 11,000 people, of which over 3000 are autistic?  https://autisticnotweird.com/2018survey/  Enjoy. So much that dispels myths about autism.  


And a personal 'favourite' from 2012 https://www.ncbi.nlm.nih.gov/pubmed/22958506 in which autistic people were shown to give a lot to charity ... so the researchers actually altered the data to make it look like they didn't give much to people-related charities, thus could be said to not care about people.   Surprisingly common behaviours from research teams, if funding comes from the breathtakingly rich and powerful anti-autism corporations.  There are some.  


These are just a few examples of research papers that show autistic people to be generally good, honest, caring citizens, 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 and need.


Here we are in 2019.  Time to move on from the dreadful language of the 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.  

The work I do with organisations like AT-Autism, Autistic Pride Reading and Autism Oxford is all about changing the attitudes of the people around us, whilst improving the self esteem of the autistic people.  It proves very successful indeed.  Families looking for those things, and good support from a specialist speech and language 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.