Saturday, 19 November 2016

Autism: 1 in 30. Missing Most of Us?

Autism.  1 in 30.

Yes, in the UK, we are still using an 'official' statistic of 1 in 100.   It's out of date.

Normally at this stage, various of my professional colleagues will roll their eyes and start muttering about 'reliable data'.  I'm very much in favour of reliable data.  If only we had some.

Instead, let's have a look at the best of the data we have, e.g. this example from the USA.  Recently, researchers asked thousands of parents if a Doctor had ever said that their child is autistic.  1 in 45 said yes.  Of these 1 in 45 children, 81% are male.

At this stage, various of my professional colleagues will no doubt be thinking, "Well that's not 1 in 30, is it, Ann."

Aha.  Isn't it?

"81% are male".  Why is that?

We know that we are missing most of the autistic women and many of those who identify as non-binary (I'll use NB as a short term for non-binary, i.e. those who do not identify as just-female or just-male).  We know that there are a variety of reasons for this lack of diagnosis of many.  For example...

We know that some GPs simply do not realise that women can be autistic, so do not refer on to a diagnostic professional.

We know that some diagnostic professionals then do not realise that women can be autistic, so do not diagnose...but instead label with things the person isn't.  (For example borderline personality disorder, schizophrenia, anxiety, OCD).   Or, only notice other things that really are there too, e.g. anxiety, depression, and fail to notice autism.

We know that some diagnostic methods use conversational questions that assume the interviewee is male.  I've had plenty of odd conversations about 'Do you like trains', and 'What will happen to this set of engineering equipment if we do this to it' and, "Have you ever collected toy cars".  That may only identify women with more-male interests, arguably.

We know that autistic women (and quite a few males/NB) do not present as autistic.

We know that autistic women (and quite a few males/NB) may not show 'challenging behaviour'.  In other words, distress behaviour visible to others.  They are more likely to internalise it or disguise it. In a recent poll in the autism social media, around 70% of autistic people said they are more likely to 'shut down' than have a distress-behaviour meltdown.  

We know that autistic women are more likely to have standard female hobbies and interests - but take them to extremes of passionate focus.

We know that autistic women are more likely to have friends (or think they have friends...), and relationships (though possibly with a predator).

We know that a lot of autistic people will be told to fake eye contact, and will have learned to copy face expression and body language.  It makes many difficult to spot from the old myths of 'doesn't make eye contact', etc.

We know that a lot of people in the BAME communities are missed from diagnosis, because people may assume that it's a cultural difference, not autism,for example.

We also know that a huge number of autistic individuals are lesbian, gay, bisexual, or transgender, or non-binary or genderqueer or many other gender identities.  Research on this is very sparse.  So our knowledge of gender identity, sexual identity and autism is woeful.  For example, diagnostic teams may spot 'butch' lesbian autistic women.  What about the 'femme' ones?  Different cultural styles and norms might mean that some are missed from diagnosis.

There are so many factors that mean we are missing arguably most autistic women and many others from diagnosis.

I can only offer anecdotal examples, as someone who trains diagnostic professionals and advises nationally on this subject... but is not a diagnostic professional.  I've known a simply massive number of autistic women over the decades.  In schools, workplaces, faith settings, clubs, venues, etc.   Nearly all of the autistic ones are as yet undiagnosed.  Quite a few don't even realise they're autistic.  'After all, autism looks like a 'badly behaved boy', doesn't it?  I'm often told this. 'Well, no, it doesn't.  That's not even 10% of what autism could look like.  Autism doesn't look like anything at all.  It's not a look.  It's  effectively a brain function and design, part of the natural diversity of human brain designs. You can't see it from just looking.

So, let's consider what happens if it's actually 50% men and 50% women/NB, a figure proposed by some of the professionals with whom I work, from their own experience also.
'1 in 45' is autistic, of which 81% of those diagnosed are boys, nearly all white.  So...adding back in the missed women and NB...those considered 'too old', People of Colour...

<does bit of maths>
About 1 in 28 in total.  Call it 1 in 30.

When I say there's around 2 million autistic people in the UK, I do mean it.

The picture at the top says a lot about how it feels, to be missed from diagnosis.  A person, sitting alone, despite a crowd of others round her.  How many end up in terrible difficulties because of that missed or mistaken diagnostic path?

We need to do better than this, collectively.  Very glad to be working with Parliamentarians and professionals across the country, to get good thinking in place.

All autistic people deserve a society that recognises and respects autism, in all its wonderful diversity.  is the link to that data. Other research studies in table below. DX=diagnosis.  These are still missing many of the autistic females and those from Black, Asian and other Minority Ethnic communities, in most instances, along with many males who are not male-presenting.