Sunday, 8 November 2015

Autism and Negative Labels

As a professional autism consultant for more than 20 years, and someone who is also autistic, I get to work with huge numbers of autistic individuals and their families. 

I also get to hear and read a lot about autism.

Most of it is good.  Some of it is not so good.

Many fellow professionals are wonderful.  Positive, enabling, caring, fabulous.

Occasionally, a professional will allege something mysterious.   One of the repeating myths is that 'all autistic people are dangerous'.  Or words to that general effect.  If this myth is going to appear, it tends to be from someone whose job it is to solve really complex situations around autism.  I do think they believe that it is true.  Is it?  No.

Let us look at how this myth happened.
First of all, for more than 20 years, we have had the wrong set of diagnostic questions.  We know this now.  We were missing out perhaps half the autistic population - the girls and women.  The questions were designed to spot the males, or females who thought in a really male way.  Ooops.
So, nearly all the research was focusing on only 50% of autistic people, yes?  No.

We were also not spotting nearly all the autistic people who sat quietly and behaved well.

When a colleague of mine did an autism test of thousands of pupils in schools, they were pretty confident that the teaching staff and specialists had found most of the autistic young people.  They had not.  There were any number of children who were autistic, but they were quiet and well behaved.  No-one had therefore struggled through the system to get a diagnosis for them.  Never found, never researched, never included in studies.  Just sitting there in the classrooms, terrified, learning little, but in a really quiet well behaved way.

So, we missed nearly all the girls...and nearly all the autistic individuals who are quieter and well behaved.  Is that it?  No.

Who else did we miss?  Nearly all the adults.  Pretty much everyone from age 18 up.

What did we have left?  The 'lively boys'.  Those who have autism and whose behaviour was very noticeable indeed. Often also with a learning difficulty, perhaps with oppositional behaviour conditions as well, etc.   And the occasional 'lively' girl who had other conditions as well, often a more severe learning difficulty and others such as severe anxiety, OCD, etc.

On this tiny population of 'lively boys' and occasional 'extreme outlier girls', we have based some 94% of our research on autism.  

It's a bit like basing all research on females by going into a remand centre for women and basing the study just on the women there.

It's no wonder we've misunderstood this mostly lovely, gentle, generous, caring population of people, quietly getting on with our eccentric and baffled lives. 

It's no wonder our passionate interests in topics are misdescribed as 'obsessions'. ["My non-autistic lad kicks a football against a wall for three hours - that's him training to be striker for Man U...whereas your autistic lad does his hobby for three hours and that's him 'being obsessive' and 'needing an intervention to direct him'.  You must be a bad parent.] 

It's no wonder our need for retreat  - so that our brains don't literally overheat in sensory nightmare situations -  is seen as 'defiance'.

It's no wonder our anxiety about pain and very real loneliness is seen as us being 'attention seeking'. 

We have perhaps all been judged as if we are young lads with a variety of very visible and complex distress behaviours.

So, almost everything so far has been based on a tiny group of the entire autistic population.  We're nowhere near researching autism itself as a whole. 

Professionals working on the 'helping parents with particularly difficult situations' stuff?  They see a lot of autistic young people with particularly difficult distress behaviour.   That is exactly why that parent brought that particular child to them.  That child does not represent all autistic people.  But the temptation a very few professionals have is to stand up in front of groups  - and announce that all autistic people of all ages therefore behave in eek ways, because the young people they see in their clinic do.  Well, no.

So, what is a typical autistic person actually like? Instead of bringing to mind that 'lively boy', perhaps imagine a woman, somewhere in her 30s to 60s. We're that quiet organist, that careful artist, that thoughtful scientist, that diligent catering person.  We're the craftsperson who spent a year creating that masterpiece, we're the trainer that tells you about autism from a personal perspective.  We're Mums, charity workers on a quest for justice, faith leaders.  We found a way to struggle through enough obstacles to do those things.  Quietly, quirkily, mourning the loss of friendships we'd love to have had the skills to keep. Exhausted from trying to access sensory-nightmare buildings.  But there we are.  Right next to you.  Unseen, unrecorded, unremarked-upon.   Often not even believed when we say we have a diagnosis.

Our lives aren't made easy for us. We struggle with parts of it, desperate to find support and services, understanding and friendships.  Autism has social, routine literal-understanding and sensory difficulties.  Those mean we have to work extra hard to find ways round those things.  If we are stuck in busy, noisy places for too long, our brain wiring takes in too much information and overheats.  It then tries to escape the pain.  Or switches itself off to cool down.  So, the vast majority of us simply go home early from things.  Or go very quiet.     That's 'typical autism'. About as spectacular as a non-spectacular thing, to look at.

It's not made easier by professionals who announce blithely that we're dangerous, or that the lives of all parents are ruined by our presence.  We are no more likely to be dangerous than anyone else, as a whole population.  We are no more likely to ruin the life of a parent than any other child, as a whole population.  I've lost track of the number of parents who have come up to me over the last 20 years and said how much their young autistic person has given to their lives.  How much they are loved.  How much they are a blessing.  How much they desperately wished they had not judged them just on that more difficult bit  - the bit when they didn't understand autism. 

Yes, parents need good advice, good support, good services. So does every person who is autistic.   Some young autistic people do also have other behavioural conditions that also need a lot of support.   We absolutely must make sure that families and young people have what they need to be able to lead a good life.  I fight hard every day to get better laws, better services for us all.    I've brought up a child who is autistic, and I walked that path.  No, not 'mild aspergers' (whatever that is).  Autistic.  Autistic, ridiculously strong, and very very fast on his feet.  And, you know what, 23 years later, he is the most marvellous person I know.  Kind, caring, responsible, thoughtful. Works with me on training sessions.   If I had based my experience of 'autistic people' on his first few years,  I would have missed the whole picture.  Looking back, any 'challenging behaviour' was him telling me, non-verbally,  that I had misunderstood something that was causing him pain.  And I had. 

We need research that looks for what we offer.  We need research that stops using negative language.  We need studies to stop categorising our every passionate interest as 'obsession' and our every sensible coping strategy as 'defiance' or as 'maladaptive behaviour'.  We need research that stops suggesting we are a disaster for families.  We need research that looks at the positives. We need research that examines autism itself, not 'autism plus learning disability plus speech/language condition plus half a dozen other things'....and then declares all of those are 'autism'.  They are not.   

So, what of the positives?  Ten times more accurate than others?  Honesty?  Integrity?  Passionate expertise in topics?  Creativity?  Do we hear enough of these?  Do we even look for them? 

We can understand what people say.  If we are told that we are a dangerous disaster, year after year, is it any wonder that we end up with depression, anxiety and a host of other things?  Wouldn't you?  Is it any wonder that employers back away from hiring us, with a few professionals wandering about telling everyone how we all need constant care and supervision to stop us behaving dangerously? Some might.  Most of us do not.  Same as any other population of people.  Want to know how many lawyers, accountants and surveyors are autistic?  What about engineers?  Architects?  Computer professionals? We've not even begun to find autistic adults.  Not really.   

I am honoured to be amongst the most wonderful autistic friends and family, colleagues and employees, from every part of the autism spectrum and of all ages.  Verbal, non-verbal, male, female, LGBT+, from different cultures and faiths.  Every one is like a precious and beautiful jewel, much loved and valued.  All deserve a life where we can be safe, enabled and contributing.  Let's work towards that future together.