Saturday 21 September 2019

Misunderstanding Autistic Neurodiversity Supporters

A drawing representing a group of diverse people.

Above, a drawing representing a diverse group of autistic people.

I'm a neurodiversity supporter.  I want all autistic people to thrive.  All of them.  All of those in care home settings.  All of those with a lower IQ.  All of those with higher support needs.  All of those who do not work for a living for many reasons.  All of those who also have mental health conditions.  All of those who use different forms of communication. And all other autistic people. 

I am the parent of an autistic individual.  For some years, I was carer to a family member in a high secure setting, with very high levels of support needed around them.

My work for the autistic communities is largely around those in care home settings, ensuring they have the best possible care, and ensuring their families feel supported and listened to also. 

My academic studies currently look at how to help autistic people who are victims of crime (many of them with higher support needs).  My studies also look at the best ways to enable respectful and positive education for all autistic people, and respectful and positive healthcare for all autistic people.

Neurodiversity support does not mean 'I only support the elite'.  Nor is it anything to do with hating parents or wanting them separated from their children (unless their behaviour is actually abusive, in which case that is a matter for social care teams, not me personally).

Neurodiversity support means we accept that autistic brains are neurodivergent, in the same people as that group of people in the illustration here is diverse in other ways.  It does not deny that some need support, and that some may need assistance for anything medical, e.g. epilepsy, food intolerances, mental health conditions, or for learning disabilities.

I do not believe that describing autistic people as tragedies, to be normalised through coercion or genetic tinkering, is in any way helpful, for anyone. This huge study on the Autistic Not Weird website included lots of people with learning difficulties and lots of people who do not use spoken language. Very few saw themselves as tragedies in need of a cure.  Look how many strongly disagreed that they should be 'cured'.  Neurodiversity work isn't about ignoring their voices.  It's helping ensure their voices are heard.  Their voices, not those of their relatives, or scientists whose work will profit from cure-treatments.   

I respect individual choice, though.

I think people have us muddled up with supremacists, a completely different small group of people who believe they are better than others.  I don't think I'm better than anyone else, or worse than them.  Just different.  Just like I was as a non-speaking autistic child, rocking in a corner.  I spent a long time learning skills.  So many do. But every person is worthwhile.  Every person deserves their human rights, and people around them they can trust.

I see too many parents putting up awful personal details about their autistic young person's toileting habits, or videos showing them during times of distress and crisis, saying 'This is what Real Autism is like!'. 

We're all real. 

We all deserve not to have our dignity and privacy ignored.

All deserve a life filled with caring and thriving.  Whether autistic or not.

I hope that's helpful.

Thank you.  is the survey link

Sunday 15 September 2019

Autism. School. "No bullying here, nothing to see....move along..."

On the left, small wooden figurines, one with a cross expression. On the right, one small wooden figurine looking afraid.

This week, I read something very strange.

A school, catering for autistic pupils.  Age 3-19.  About 150 pupils. It's run by behaviourists who use a form of ABA (PBS) on the pupils.

I scanned through its policies, noting the ones that list the endless forms of physical restraint they permit:

Friendly escort. Single Elbow. Figure of four. Double Elbow. Single elbow (seated).T Wrap.
T Wrap to seated. T Wrap to ground. Cradle. Front Ground Recovery. Back Ground Recovery .  The list continues.

So,  including face-down restraints that I was under the impression were now pretty much banned after major safety concerns and deaths internationally.

I read the latest OFSTED report for them.  Well, that was five years ago.  But there was a more recent mini report for them from these school inspectors. 

The inspectors said there was no bullying of any kind at all.

And, for me, that was a heartstopping moment.  Not in a good way.

No bullying.
At all

Not from any pupil to any other pupil
Not from anyone.
Not at all, all year, perhaps year after year.


I'm sorry, but I don't believe them.  I want to, but this isn't fairyland.

So what can 'there's no bullying' possibly mean?

That the school staff are clueless about spotting it?
That they are forbidden from recording it, because it makes the school look bad?
That they are choosing not to record it?
That they have recorded it, but the information wasn't given to OFSTED?
That the pupils are terrified of saying they're being bullied?
That the pupils aren't given the means to report bullying?
That the pupils are 'gaslighted' into believing that what happens to them isn't bullying, that it's actually an OK thing to do to them?

That someone outright lied to the inspector?

I would find 'there's no bullying, honest guv' to be the biggest 'red flag' I can imagine.

Wouldn't you?

Saturday 7 September 2019

Autism and IQ. Oh my, we had this one wrong, eh?

Updated February 2022

For decades, we were told that nearly all autistic people mostly have a low level of intelligence  - a low IQ.  This is a big part of being diagnosed with a 'learning disability' or 'intellectual disability' (shortened to LD or ID) 

This was based on a misunderstanding of autism, and a misunderstanding of which IQ tests work for us.

An average person has an IQ of about 85 to 115.   Very few have an IQ below 70 or above 130.  If we make a chart of any big group of random people, it may look like this.  Along the bottom, their IQ scores.  Along the side, how many have that IQ score.
So, normally for most people, only about 2 out of every 100 people will have an IQ low enough to be classed as an intellectual disability. (2% means 2 people out of every 100 people, for those who don't speak a lot of maths)

Chart showing the ranges of IQ, described in text

So, about 2% have an intellectual disability.  There's a lot of difference in skills, in that group.  Normally professionals divide that 2% into four groups.  These are shown in the table above.  The standard groups are mild and moderate, which is nearly all of those with intellectual disabilities.  And then severe & profound, which is a very small number of people indeed.  Every one worth care, consideration, being heard, being safe, and having a full set of human rights and proper support.  We learn, through this and through asking people with learning disabilities that most people with an intellectual disability can read and write.  But we're routinely told that people with intellectual disabilities cannot possible understand or respond to simple questions or access any social media.  Isn't that odd.

What was our belief about IQ and autism?  Here's some typical older research:
1988. Smalley, Asarnow and Spence decided that only a quarter of autistic people had an IQ over 70.  The rest, three quarters of autistic people, were believed to have a learning disability/intellectual disability.   Not 2 out of every 100.  75 out of every 100.  That's a huge huge number who were believed to have a LD, eh.

By 2010, Fernell and team had written research suggesting about 40 out of every 100 autistic young people had a LD. (40%)  So, the percentage was dropping.

For 2012, the USA did major research on autistic children and young people.

It has some interesting stuff in it.

Among all 3,353 autistic children they looked at, on average about 31 out of every 100 had a LD. So that's lower, again.

But it varied, a lot.  In some States, like Utah, it was only about 20 out of every 100.  In others, nearly half the autistic children were said to have a LD. Are they too-often only diagnosing autism if it resembled a myth of low IQ?

And it varied by gender, too.  37 out of 100 autistic girls had a LD.  Only 30 out of 100 boys. Are they too-often diagnosing autism in girls if they also have a LD?

Fast forward to 2019, and we have a very useful brand new study from Scotland, who looked at nearly all their children in the 2011 Census. This is the link to their work:  It's not a study of IQ, but it has info within it that is fascinating.

"...Of the children and young people with autism, 15.0% additionally had intellectual disabilities, and of the adults aged 25 years and over with autism, 29.4% additionally had intellectual disabilities."
So...when they crunched the numbers for the whole of Scotland, for autistic children, only 15 out of every 100 autistic children also had an intellectual disability.  We can assume that most of those are able to read and write, because we already know that most people with intellectual disabilities fall into the mild/moderate band.   

Fast forward again to This new study about English autistic children which looked at nearly 120,000 autistic pupils in England who were in state education.  Of these, the authors say 18% had "learning difficulties".  This usually includes e.g. dyslexia as well as learning disabilities, so we may assume that the figure for learning disabilities (intellectual disabilities) is lower than 18%.

What's going on here, then? Why all these different numbers?

Well, it depends what we're measuring, and how.

First, we need to find all the autistic people.  That's not been easy. We had those myths that autism looked like an antisocial young white lad with a low IQ or a total focus on trains (or both...), and of course little or no speech and deeply unusual behaviour.  So we missed e.g. the females, Black autistic people, Asian autistic people, extraverts, older fact nearly everyone.

Some countries, and some States, were better at finding the missing people.
Some countries, and some States, were still assuming autism looks like a low IQ and definitely male.

The only way some females got diagnosed is if they also had a LD, and also had some pretty unusual behaviour.  The rest weren't discovered, weren't measured.  Or were routinely told they couldn't possibly be autistic, and turned away by the first professional they saw.

Then, there's how we measure IQ for autistic people.  We'd often been using the wrong tests, it seems.  Using a Raven's test, the IQ results for autistic people are way higher than we'd realised, for many.   Here's a chart where people realised the error.  Bit technical, so feel free to skip this explanation:  Four sets of bars.  Each shows a different IQ test.  First two bars in each group of four is the results of female and male autistic people.  Second two bars in each group of four is the results of female and male non-autistic people ('controls').

The first three IQ tests showed a whacking great difference between autistic people and the non-autistic ones.  But look at that Raven's test.  Hardly any difference at all.  Have we been accidentally putting a lot of autistic people into the 'intellectual disability' group when in fact their IQ is pretty normal?

It's all quite a challenge, eh? far as we can tell from the Scottish data, about 15 out of every 100 autistic young people also have a LD.  And the rest do not.  But if you're older, it's become clear from wider research that there's more chance of you being missed from diagnosis, because of the myths.  Maybe, if we used the right IQ test, it would be even less than that 15%.  I suspect it'll be no different to the rest of the population, to be honest.   But I can't prove it....yet...

A lot of what we thought we knew about autism has been wrong.  A lot of the alleged costs of autistic people was based on the old data about low IQs.  A lot of the assumptions about our abilities and employability was based on those old myths, too.  Autistic people who can read and write are routinely told that there is a mythical 30-50% of autistic people who cannot communicate at all.  And, on that basis, anything we say is only representing one of two more-or-less equally big groups of people.   Mmm.  Every person needs enabling to communicate, and the needs of each person matter.  But we don't need to invent huge numbers of profoundly intellectual disabled autistic people, do we.

We need to get a grip of what autism is, and is not.   It's not a learning disability, although some also have a learning disability.  And we need to move firmly into 2021.  A 2021 where autistic people of all kinds are valued, whatever their IQ.  Not seen as burdens and costs, but as marvellous people with so much to offer.  My other blogs talk about the honesty, integrity and full humanity of this wonderful population.

We need to stop scaremongering about autism.  If you have an autistic child, it's very likely they can lead a lovely life - of varying sorts, if found, evaluated correctly, and enabled and supported properly.  I've seen too many parents brought to absolute hysteria about 'all autistic people are wrecks incapable of doing more than crayoning, who will live in nappies forever!!'.  Not a pleasant way to describe anyone, let alone with such inaccuracy.  Just rude, really.  Incidentally, autistic people are no more likely to be incontinent than anyone else, and an awful lot of adult women in the general population have degrees of incontinence, for example.  Are they leading awful lives?  Generally not. Though it would be great if science could do more to assist, of course.

That scaremongering is costing a lot of lives, in forcing autistic people to live under-employed and undervalued lives in the margins, instead of as welcome and loved people.  In forcing people to be less than they can be.  In routinely underestimating what many can do.  In routinely ignoring any of us who are able to communicate, in a quest to believe that 'real autistic people' cannot do so.

Every autistic life is a life of full worth.

Let's do better, eh?  We can.  And we will, together.

Thank you.

PS - further research on how many autistic people may have a lower IQ? Only feel comfortable hearing statistics supported by non-autistic-led charities? The National Autistic Society's preferred journal, Autism, wrote about this study which shows about a quarter of the autistic people had an IQ lower than 70.