Saturday, 19 November 2016

Autism: 1 in 30. Missing Most Females.

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   It's out of date.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 some data 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 females.  We know that there's a variety of reasons for this.  For example...

We know that some GPs simply do not realise that females can be autistic, so do not refer on.
We know that some diagnostic professionals do not realise that females 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, and fail to notice that there is also 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 will only identify females with more-male interests, arguably.
We know that autistic females (and quite a few males) do not present as autistic.

We know that autistic females (and quite a few males) 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 meltdown.  Looking for meltdowns?  You could be missing 70% of us.
We know that autistic females are more likely to have standard female hobbies and interests - but take them to extremes of passionate focus.
We know that autistic females are more likely to have friends (or think they have friends...).
We know that a lot of autistic females will fake eye contact, and will have learned to copy face expression and body language.  So will some males, of course.

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 females from diagnosis.

I can only offer anecdotal evidence, 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 females 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... '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 design. You can't see it from just looking.

So, let's consider what happens if it's actually 50:50 males and females.
1 in 45 is autistic.
81% are boys.

<does bit of maths>
If it's actually equal male/female, then it's 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 woman, 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.

Want good information on this?  Look at the work being done by Autism Oxford UK and their training teams, Carly Jones, Limpsfield School, Baroness Hollins, Cheryl Gillan MP, the National Autistic Society conferences, ReachoutASC and so many other excellent people and groups.  I wish I could name you all in the space we have here.

All autistic people deserve a society that recognises and respects autism, in all its wonderful diversity.  is the link to that data.