Tuesday, 1 January 2019

"Nearly all autistic people can write" - About Autism, IQ, Communication

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. The big factor for intellectual disability isn't 'autism', but being born too early, it seems.  A larger study from the whole of the Scottish Census shows only 15% of autistic children have an intellectual disability.

This is useful, too. 
https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/epidemiology-of-autism-in-adults-across-age-groups-and-ability-levels/D4F48E07D1002DE6F75A67FF9A4FFCF7 from this well respected Journal states "Few adults with autism have intellectual disability". Plenty of facts and figures in that Psychiatry research paper to support that statement.  About 1 in every 66 autistic people has a profound intellectual disability.  

What about those that are given a diagnosis of severe or profound intellectual disability, do I hear people ask?  Surely their IQ is 'too low' for them to be able to write or communicate meaningfully?  I'd debate that as well, 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 a huge percentage 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.