Thursday 13 December 2018

Autism: About self-identity, freedom, and human rights.

Picture of a woman Suffragette, black and white photo, holding a sign asking for freedom

Autistic people are asking for freedom and basic human rights.

Freedom to be recognised as different.  As worthwhile.  As able to use our own communication, our own choice of identity, our own culture.

After decades of being described as deficits, as disorders, as 'mental health conditions', we recognise that other groups have trodden that dangerous path. The path that leads to freedom.  Which groups?   For example...

Women, with their quest for the vote, and for basic rights and safety.  A quest that still goes on today.  Remember the old days when women's rights were denied because they were allegedly 'unstable' and 'incompetent'?  Dreadful, wasn't it.  Hoping for a society that continues to quest for justice for women.

People of Colour, from a catastrophic past, sold to slavery, a fight for equality that goes on today.  Remember the old days when Black rights were denied because they were all deemed 'dangerous' and 'incompetent', when of course that was prejudice?  Horrific, wasn't it.  Our society still has a lot to do on this.

Gay people, who were told they were a 'mental health condition', and imprisoned for daring to be gay.  Still fighting for full equality today.  Remember the old days when gay people were denied their rights because they were seen as 'perverts', etc, unfairly?  Shameful, wasn't it.  Still sometimes happens.

So many other groups, unfairly described in humiliating ways.  People truly believe this stuff.

We go to some meetings where we have autistic people described by some (and I do mean some, not all) as 'unstable', as 'criminal', as 'incompetent', as 'dangerous'.  As not fit to be on social media without a Proper Adult to supervise us.  Egads.

Sometimes, I hear non-autistic Professionals say, [paraphased] "We can disagree about what autistic people are described as.  It's important we're not just all agreeing with one another."

But...would they be keen to walk up to a woman and say it was a matter of little consequence to call them a 'person with femaleness disorder'?  Just a different perspective?

Would they go up to a gay person and describe them as having Gay Spectrum Disorder, and think that was an acceptable point of professional disagreement, just a question of different viewpoints?

Autistic people are living lives too often so appalling that I can barely begin to describe it.  Catastrophic lack of access to even the most basic human rights in many cases.  The right to safe and good employment, healthcare, education...the list is endless.  Catastrophic health outcomes.  Catastrophic levels of suicide ideation.  The majority have considered ending their lives, so bad has been their experience of prejudice, hate, ostracism, assault, defrauding and lack of provision.

But when autistic people say, "We would like to be called Autistic People, as a group, please", and survey after survey after survey...year after year.... shows the vast majority wish this to be the group name....well, there are a lot of professionals who think they know much better than the autistic people.  That autistic people don't deserve their choice of identity.  That 'person with autism' will do.

Person with blackness.
Person with femaleness
Person with gayness.
Person with autism.

Which of those sounds OK?

We're not a disease, a deficit, a disaster, an incompetence. We're a people.  Our autism is not a detachable item, it's a way of thinking, a way of encountering the world.  Some need more support than others, yes, and we need a world that respects that too. A world that supports us, and our families, and all we can bring to the world when enabled.  But we get nowhere by ignoring autistic requests.

And if we are serious about changing outcomes, we need to be serious about respect.  By all means respect individual choice.  But, if a huge majority asks you to show respect by respecting their choice of group description, it's important to listen.

I put it to some in the professionals that they have been in their own 'echo chamber' so long that they have no idea they're even in it.  An 'echo chamber' where calling autistic people derogatory and inappropriate things is so normalised that no-one even realises the harm.  No-one questions the language, the underlying assumptions.  The effect.

Autistic people leave a room in tears, after hearing yet more 'othering' language?  "Well, that's just their autism, innit..."

Is it?  Or is that a cop-out?  This is a chance to reflect.  To apologise.  To learn.

Let's do better, together.  We can.  And we must.

I thank all of the professionals, including many colleagues nationally and internationally, who have listened, and continue to listen.

Thank you for listening.