I’ve been toying with writing this post for a few months now but have struggled to articulate what I believe to be a massive problem for the autistic. A chance encounter this afternoon has spurred me into action.
I nipped into Poundland on the way home from work today to buy some pegs. I bumped into a young man who was in the year below Steven at school, so I knew him from 1996 to 2007. Like Steven, he has autism but is non verbal as well. Whenever I saw him back in the schooldays, he always came up for a cuddle and loved to be tickled. He was a very placid, sociable boy. He was with his mother today who told me the disturbing story of the past two years. She had tried to contact me two years ago but neither the school or social services would pass on our contact details and were not willing to act as an intermediary either. For Steven’s friend, the transition from children’s to adult services didn’t go well. The expectation from social services was that he would go to a college five days a week to learn life skills. This is not what the lad wanted. The mother, who was a teacher had to give up work because they couldn’t get any support package at all. Two years ago, the normally placid young man erupted and for several weeks trashed the home and was aggressive to all his family members. Social services didn’t want to know. The medical profession didn’t want to know. Round our way, you are discharged from NHS children services at 16 but you do not move into NHS adult services until you are 18. There’s a two year void. We fell into that void back in 2007. The upshot was that Steven’s schoolmate ended up being sectioned in a mental health hospital in Essex for 18 months. He cam back home last November after an almighty struggle by the family, still without support except for a considerable prescription of anti-psychotic medication.
This story is so familiar to me. It happened to Steven five years ago and I know of at least a dozen young men who have been through the same thing.
When it happened to Steven in 2007 he had to wait several months before he turned 18 but then he received several medical opinions: ” a severe depressive episode”; “a possible psychotic breakdown”; “a spell of mental instability”. Having experienced psychotic episodes in my personal life and many times in my professional life, none of these diagnoses seem to fit what Steven was experiencing. It may sound less dramatic but the closest description came from a very experienced classroom assistant at the school. I’ll never forget her almost throwaway comment: “He’s gone from Mr Charming to Mr Frustrated”. Frustrated is exactly what it felt like to me, although I acknowledge that is much less sexy than psychotic.
What happens after one of these diagnoses? Well, normally a spell in a mental health unit (if you’re lucky, one geared for the learning disabled) and the introduction of anti-psychotic medication. And I have a problem with that. For starters, Steven has put on seven stone in the five years he’s been prescribed risperidone; the lad today has put on five stone in two years on the same drug. Is that a price one has to pay? And for what?
As a psychotherapist, I’ve always found the term “breakdown” as unhelpful. The best alternative I can come up with which seems to resonate with many clients is a developmental crisis. Once again, less sexy, but people either come through their crisis or get stuck in it.
Here’s my big question: what happens to lots of young autistic men in their mid/late teens? I can accept that having autism doesn’t make you immune to mental health problems. But the professional world likes to pathologise. The person my be acting out their frustration; their developmental crisis and the only way the world can deal with this is to pathologise the person; hospitalise them and sedate them. The world isn’t really geared to the non verbal or those who have problems verbalising their difficulty, so it’s easy to see how a developmental crisis can be mis-interpreted.
In 2008, after five months of hell, Steven eventually told us what the problem was: “Steven Neary’s not going to school anymore. Steven Neary’s a man now”. He had outgrown school and was ready to move on. But for five months he didn’t have the verbal means of communicating that. From a young boy, even to today, Steven has always had difficulty communicating a statement in the negative; there must be something in the sentence construction that doesn’t compute. He has no problem with “want to go swimming”. But if he doesn’t want to go swimming, he’s more likely to hide his trunks or kick off so it’s not safe to take him out, rather than say “don’t want to go swimming”. I’m sure he’s not alone with this difficulty.
Back to my main point though. I have heard enough stories over the years to know that the transition for an autistic lad from boy to man is potentially traumatic. I also know enough to know that perhaps it is easier? or safer? for the professionals to see this as a medical issue and subsequently pathologise and treat the issue. And then the person is let with a psychiatric diagnosis and a reliance on anti-psychotic medication to treat their crisis.
My question for the blog world is: is this helpful to the autistic person? is the diagnosis and medication a useful response to, what, from other eyes be seen as a developmental crisis?