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   It's out of date.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.

Monday 14 November 2016

Can autistic people be 'pillars of society'?

A "pillar of society" is someone who is highly respected and does a good job in society.
After decades of some groups pretending that all autistic people are a disaster, it's a role we have often been denied. "Oh they're all dangerous and unreliable".  Hmm.  You know that you're hearing prejudice when people 'other' two million people in the UK in such a way.

Yes, it is about two million.  Yes, I know the official statistic is 1 in 100, which is less than two million.  I'm using the national figures in the US, where a careful look showed it's about 1 in 30 boys.  And I'm aware that we are missing nearly all of the females from diagnosis at the moment.  My professional judgement is that we'll find it's 1 in 30 females also.  1 in 30 of the UK population?  That's around two million.  Only 1.6% of those are what we used to call 'real autism', e.g. also with a severe learning disability, speech and communication difficulties, and living in a care home setting of some kind.

So, let's look at the situation with an example or two of the other 98%+.
Person 1 - a highly respected professional running a national practice for the best part of 30 years.  Autistic.
Person 2 - a member of the teaching team working a school as an autism specialist for years.  Autistic.
Person 3 - a national specialist in project management.  Autistic.
Person 4 - a top researcher in a major University.  Autistic.
Person 5 - a senior faith leader, working patiently and carefully for decades.  Autistic.
Person 6...

I could go on for a few pages.  These are just a few of the autistic people I know and work with.  And those whose lives involve art, poetry, music, sculpture, prayer, care work.  Also, of course, those who are not working at present, or cannot work.  Each is a person of unique worth, irreplaceable, loved for who they are.

Me?  I run and own a national professional practice and have done for 16 years.  I'm a wife, a mum, a friend.  I've been in a lovely church for many years now, enjoying serving and helping to lead informal worship for small groups.   I've served as an adviser to some 200 MPs and Peer in the Houses of Parliament for more than five years and counting.   I advise or train organisations across the UK, including the BBC, Royal College of Psychiatrists, University of Oxford Colleges, schools, parent groups, children's centres, social workers, and any number of others.

And I'm autistic.  No, not 'mildly'.  I started off non-verbal.  I have a wide range of sensory difficulties, routine needs, etc.  I cannot see body language.  I'm faceblind.  I struggle with eye contact.  I collect maps and data.  I 'shutdown' and can struggle with tasks that should be really easy.  I learned to work with my strengths.  That's what made a difference.  No therapy.  No cure.

Every time I see these terrible scaremongering efforts...where people take one or two really complex situations and pretend we're all like that, forever....well, it makes me sad.

It makes me sad... because every time we do this ridiculous, 'They are all a tragedy unless you spend a fortune on this 'cure'  thing, we make life harder for all of us.  All of us struggle then to be taken seriously. All of us get distrusted.  All of us get feared. All of us face a darker future.

It makes our lives that much harder.  We may have to fight for years to get access to the simplest things, because some people are then afraid of including us.  No, seriously.  It gets more difficult to be listened to.  It can take years to access meetings, because, after all, 'those autistic people are dribbling flapping things - why would we want one in this meeting'.  Hmm.  I'm quoting, there.   I'm also quoting when I say, "Why would we include autistic people?  It takes too long to include them too."   Fascinating what's said, isn't it.

It has been so exhausting for me, as a professional, that I have had to take some very wise steps to safeguard my health and wellbeing, frankly.  I tend to only work now with groups that take me and my autism needs seriously, and take me seriously as a professional.  I advise that also for my other splendid autistic colleagues across the country.   I'm fortunate to work with a number of really excellent groups who have realised how easy it is to get people like me to be productive and give really good advice.   I'm also challenged by a few who make it ridiculously difficult, then try to blame me for it.

All autistic people need things adapted to make life more doable for us.  In the same way that people who are Deaf or hearing impaired will need to adapt communication and may need hearing aids, loops, etc. 

People like me are the ones who fight alongside others for children to have really good support, really good laws to protect them.  We fight for families to have good help, good respite.  We fight for good education and good employment opportunities.   The moment we are 'othered', demonised, belittled in the eyes of others, we can do none of that.

I'd urge people not to generalise about autism.  I'd urge people to be responsible in their use of language.  I'd urge more fellow non-autistic autism professionals to get their noses out of their research papers long enough to meet a wider selection of us, as people, as friends.  Not as test subjects or 'patients'.   Believe you me, we know when we are being treated as a patient rather than as a fellow professional. 

Sometimes, of course, it's genuine fear that stops some fellow professionals engaging with us; they may have never met an actual autistic person before.  I kid you not.  Some of the autism degrees never require people to have met a single autistic individual. Do be careful who you pick as your 'expert', good people. There's lots of excellent ones out there.  And quite a few who hide behind things when near us, in case we speak to them...which is quite amusing in a way.

Especially, I'd urge us to ask about the creativity of autism. The spirituality.  The caring.  The love.  The honour.  The respect.   The passion.  The determination.  The honesty.  The dedication  The search for fairness and social justice.

If we are not prepared to look for those things, then we are missing nearly all autistic people, in a quest to prove a point that was never worth making.

No autistic person is helped by being portrayed as a tragedy. Or as an epidemic.  Or as a monster in need of 'dog-training'. 

I work for a world where every autistic person is allowed to thrive, grow and love as themselves.  Exploring their own interests, their own passions, their own way of communicating, their own faith or spirituality, their own emotions, their own relationships and friendships. Safely and responsibly, of course.  As is the case for all other human beings.

Thank you for listening.