Sunday, 30 April 2017

Behaviour: On Trying To Change Autistic People

I'm going to talk about autism.  Specifically, autism.  Not separate speech/language conditions.  Not learning disability.  Not mental health. Not personality disorders.  I will also generalise throughout.

I'll use the US diagnostic list for autism.  DSM 5.  If we re-translate it into autistic community language, it reads rather more respectfully.  So I shall do that:

a) We use body language differently to other people, including eye contact.  Eye contact is described by most autistic people as painful, overwhelming, as stopping us listening to others if we have to do it.  We do not stare into eyes to convey meaning.  Ours is a different body language and eye contact system to yours.  We understand the body language of other autistic people.  We don't understand yours too well.  Our way of detecting emotion, and displaying empathy, is therefore different.  The same is true the other way round; most non-autistic people are rubbish at interpreting our use of body language and eye contact.  Most non-autistic people are rubbish at empathising with our emotions.

b) We use conversation differently to other people, for example to add information, not to use 'social lies' to improve our social status and group popularity.  For example, "Oh you look so well!" when the person doesn't look well.  Whilst appreciating that telling minor lies to one another is a standard way of interacting for many non-autistic people, we just don't do that.  It's very bizarre, frankly.  We build friendships differently to that.  We also don't need to be a higher rank than other people.

c) We play differently and socialise differently, often preferring to work in parallel to others, not facing them.  Our hobbies are our intense interests and specialisations that go on to become our passionate expertise and possible careers.

d) We may repeat words, whilst we are learning them.  This is because of the difference in brain wiring.  Being able to hear the words again allows us to process them.  Or we may use a different communication system completely.  Sound, picture, movement.  In the same way as a Deaf person using Sign Language will use their hands and body, face expressions and eye contact differently.  We do not tell Sign Language users to keep their hands still as it's embarrassing. Well, I hope we don't. I leave you with that think about it...

e) We may use our bodies to help us 'map' our surroundings.  In the same way as some animals use sound to locate things, we may use repetitive sound to do the same.   Or we may use our hands flapped in front of our eyes to help our eyesight judge distance (which we do differently to others).  We may use rocking or flapping as a way to sense where our body is at the moment.

f) Most of us have extreme sensitivity to some sensory things, and this may result in us experiencing particular lighting, sounds, smells, textures, pressures, temperatures etc as extremely painful.  Or as extremely cheering.  Ours is a different sensory world.  We will need to move away from painful places.  So would you, if you were in pain.  It's quite a normal reaction, isn't it.

So, that's autism.

Nothing about lack of empathy, or violence, or low IQ, or self-harm.  Odd, isn't it, because we get a lot of people who tell me that Behavioural Therapies are improve empathy, stop violence, stop self-harm, and improve IQ.   I'm probably pleased to think that this would work, but that's not autism.  That's a whole different set of things.  Yes, some autistic children may have those too.  The same as some children with red hair may have them.  Or some children with size 5 feet.  Or some children who are Black.  Or some children who are white.   Those things  - violence, self-harm, etc, are not criteria for autism.  It's true that if an autistic child also has some of those other things, they're very likely to get diagnosed faster...or indeed diagnosed at all. Autism by itself is very law abiding, moral, honest, fair.  Generalising.

So....what do we mean when we say '...this behavioural therapy will help my autistic child'?

Do we mean that the team are going to coerce the child to socialise entirely in ways alien to an autistic child... instead of encouraging them to find friends who 'speak their language'? to make them socialise even when exhausted and in pain, desperately needing a break?   Or do we mean they are teaching them how to interpret the language and culture of the non-autistic people around them?   And teaching the non-autistic people how to interpret the language and culture of autistic people?  Developing mutual respect for difference, and mutual understanding of those differences?

Do we mean that we are going to coerce the child to give up their passionate interests, their specialisms, and do the things that please us instead?  Or to find ways to use that skill set? I was told to stop focusing on horses and maps for so many hours.  I went on to run a Surveying company, using maps, valuing equestrian property.  Go figure...

Do we mean that we are going to prevent the child from learning language in their own way, e.g. repeating words, in order to make it easier for ourselves to be around them?

Do we mean that we are going to prevent their natural movement, their way of sensing the world around them by using their bodies...their way of staying calm and realising where they are....?  

Yes, if a situation is unbearable for someone, then something could do with changing.  Does it have to be the autistic person that changes?  Serious question.  Many therapies assume the answer is always 'yes' and that the autistic person must always be the one who changes by 100%.  Is that true, though?

I'm all for respectful therapies that treat autistic people as whole people, as people with a different way of being, a different way of interacting.   Who treat us with the same respect as they would a Deaf person using sign language, and allow us to use our bodies and our signalling in our own best way.   Who teach others about us, instead of making us do 100% of the adapting, 100% of the change, no matter how exhausting it is, no matter how spirit-crushing it might be.  No matter how many tasty treats are given as a 'reward' for giving up all that we are.

You see, if I am in a world that says to me, "Ann, everything you are is wrong...", and I am taught that I must be entirely not-me, in order to please respectful is that?  Who has 100% of the power here?  100% of the control?  Why do so many autistic people end up committing suicide, after a lifetime of hearing how 'wrong' we are?  That's a serious question, too.

If you believe your child is in a respectful setting, where their autism is valued, encouraged, and they are given the skills to use their bodies and communications their best autistic way, great.  I'd support any therapist who starts from that basis.  I look for settings where teams know that some 30% of autistic people are LGBT, and respect that.  I look for settings where teams know that autistic people communicate differently, and are able to communicate our way also, when needed.  I look for teams that include autistic people.

If you or your child's team are confusing autism with a lack of empathy or a tendency to violence...and convincing themselves that the therapy for these is treating 'autism', you need to have another look at the diagnostic list.  

Certainly, we need to make sure that every child and adult of every sort is safe, and well, and able to learn basic self care skills where possible.  To stay safe and to find the right friends and the right path for themselves.   Any good, respectful parent, teacher or therapist will want those goals.

Erasing autism is not a goal that anyone should aspire to.

You are blessed with a wonderful child. Someone bringing something different to the world.  If we take the pressure to conform off of them...and the pressure to endure impossible social and sensory situations...and we learn about autistic difference....let's see how brilliant that shared journey of life can be.

Thank you for listening.

[The picture at the top shows a grid of identical pawn pieces (of the sort you might find in a basic chess set), shaded red.  Amongst them, one white piece.  It signifies someone who is different.  Should our response be to colour them red?]