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.









Tuesday, 1 January 2019

"Nearly all autistic people can write"



Sometimes I say something radical.  So radical that some out there are shocked.  One of these statements is, "Nearly all autistic people can write." 

"Oh no they can't", say a few stalwarts of the autism world.

"Oh yes they can!", I respond.

So, without it turning into a complete pantomime performance, let me explain how I reach this conclusion. 

First of all, note the phrasing.  "Nearly all autistic people can write".  It does not say, "Nearly all autistic people are writing."  That would be untrue, I sense.  But, can they?  Why yes, nearly all can.  Here we go with the explanation.

Let's look at IQ. This is one of the big Theories, that lots of autistic people have a low IQ.  But, do they?  This study of over 10,000 autistic children for example shows that more than three quarters have an IQ in the normal range. 

What about the other quarter, do I hear people ask?  Surely their IQ is 'too low' for them to be able to write using anything?  I'd debate that as well, but for the moment let's assume that may be true...so let's consider the next study, which looks at the sort of IQ test used for autistic people and found that most studies used the wrong ones.  If they had used the RPM test, they were likely to find that many of the allegedly-very-low-IQ autistic people had IQs that were in the normal range.  So, not many autistic people have a low IQ.  I could at this point debate further what we mean by 'low IQ', since a lot of the allegedly-low-IQ autistic people I share life with are a darned bit brighter and faster than me in some areas.  Every single one of them fabulous people.

Next up, who are we measuring?  Do we think we have the full number of autistic people to measure for things like IQ or writing ability?  No, we don't.  We know from other research that many autistic people do not realise they are autistic, or are not prepared to say that they are.  These groups include many females, many People of Colour, many people who are extravert, many who are older, many others who have learned to mask their autism at huge personal cost.   Some also who were misdiagnosed with things they don't have at all, such as personality disorders or schizophrenia.  In reality, some 1 in 30 of the population is likely to be autistic, (taking the USA CDC latest figures and recalculating for the missing people.  And, in the UK we were thinking it was 1 in 100.  So, it appears we may be missing 70% of the autistic people from much of the research done to date. Most of those missing autistic people are likely to be reading, writing, doing jobs quietly (or noisily...) without a person ever testing them for a single thing. 

I put it to the research communities that the statistics we have at the moment may be unrepresentative of the whole.  

Plenty of researchers have done their best, of course.  It's a societal problem, in which diagnosticians have been determined to look for geeky males or people in Institutions or other care settings, and failed to observe the others.


On we go to the subject of writing.  These days, we have wondrous technology.  We have apps for everything.  We have tablets, we have laptops, we have speech-to-text products, we have smartphones, we have Alexa and similar.  The photos on the page show a fairly typical easy-write app, and a standard English keyboard.  Just two of the ways that people can write, independently or with assistance.

So, that takes us to where we started.  With the statement, "Nearly all autistic people can write."

And so they can.

What we need to do is enable it.  Enable people to communicate in ways that turn their creativity, their thoughts, their ideas, into writing.  And of course any other communication that works.   We see so much on Twitter and blogs already where people who do not use spoken language are able to communicate.  I use such things when I'm not able to speak.

If we assume competence, we will have a lot fewer frustrated, depressed, anxious autistic people in the world.


I think that's something worth aiming for, between us all.

Thank you for pondering this.