Last week I went to meeting between parents of ASD children and council officials involved in education services for mainstream ASD or Aspergers children in my town.
I had a bit of a rant about labelling children. Some people give it a posh name: Diagnosis. As I’ve written before I think the Autism Spectrum Disorder label is a load of nonsense. So it was a bit ironic, there I was at a meeting for parents of autistic children saying: don’t call my child autistic.
I hope I didn’t offend anyone when I described labeling your child as a Faustian pact to access services, or when I said that I don’t want him branded with an A on his forehead. I hate the way the label clumsily cordons children/people off without really explaining anything.
So what is MY problem with an autism label? I am happy to describe my child’s actual problems, here goes: He is below average at interpreting non verbal communication and he is significantly below average for sequencing and motor planning.
But if we gave him an ASD label, here are some of the assumptions that people would start making (or have tried to make in the past):
- Prefers his own company – he adores his sisters, cousins and his few good friends
- Sensitivities to noise and light – he loves fun fairs and theatre and excitement
- Hypo-sensitive to temperature, pain etc – (This one was my misguided assumption) actually he feels hot/ cold/ hungry/ thirsty just like anyone else, but he lacks the motor planning skills to know what to do about those feelings. Being ashamed of his inability he will often suffer in silence.
- Language problems – Max has bucket loads of language. Loves telling stories and composing little songs. He’s a bit slow to relate what happened at school that day because he has trouble with the sequencing.
- Food sensitivities – Max likes food that he can pick up with his fingers and is averse to ‘bits’ (rissotto, stew, stir fry) ie anything that needs good motor skills to get into his mouth with a fork. If we help him with the mechanics of eating then he has an adventurous palate.
- He doesn’t do make believe – Max has the opposite problem, his understanding of the real world is so delayed that he will happily dwell in fantasy world instead.
- Obesssions and interests – when anxious he will withdraw into his own safe world. I would prefer it if he felt safe in the real world.
- He wriggles and fidgets to ‘stim’ – he wriggles and fidgets when he feels out of his depth. Teach him the stuff he needs to know (the non verbal and motor planning stuff) and he can be calm and at ease with himself.
- Looking at people hurts him – he’s fine about looking at people, he just didn’t learn and internalise the cultural norms of non verbal communication as an infant. Not being on the page with everyone else makes him anxious. We are all a bit awkward and avoid meeting the other person’s eyes when nervous.
- Can’t read gestures and non verbal communication – if he can learn to read a book then what is to stop him learning to read facial expressions and body language? In fact he is learning this, albeit later than most people.
- He has Behaviour Issues – he has significant gaps in his understanding. When his behaviour is odd it’s because he is anxious and ashamed of his deficits. He doesn’t need punishment, he needs relevant education.
- He will always be autistic – all people change and learn and grow. There may well be stuff that he always finds hard, but please don’t make presumptions about how much he can learn.
So I’m not accepting of the autistic label and standing shoulder to shoulder in solidarity with everyone else the autism world. Hi functioning, Lo functioning, Aspergers: so what? DSM V missed a trick and it’s time to disassemble the component issues that contribute to autistic type behaviours.