Why I needed a diagnosis of Asperger’s three years ago.
By Sam Cottle.
For anyone who’s ever been through the mill of the NHS in the UK to try and get the treatment you need, you’ll know that it can be hell. Britain’s NHS is a giant bureaucracy, a system of healthcare free at the point of need which can sideline the needs of patients for months or even years — my experience is with the autism diagnostic services and the early intervention for psychosis team, who originally failed to make the referral.
I was diagnosed as having had a first episode of psychosis three years ago, and since then I’ve been under the care of the early intervention team — or ‘minority report for mental health’ as I like to think of them. They’re primarily interested in preventing recurrent episodes of psychosis, and in spite of their ‘interventions’ (which amounts to them coming round once a week to check up on you) I still suffered enormously, probably as a result of an underlying psychotic illness than secondary psychoses. I also believe that I was prescribed medication when I shouldn’t have been, due to having Asperger’s, and that this has led to a worsening of my condition over these three years.
I attempted to seek a diagnosis of Asperger’s through the early intervention team, but was eventually dissuaded. Given that it’s my belief that my symptoms were probably, to a great extent, the result of having OCD coupled with Asperger’s, that this move on their part was highly counterproductive. This is due to the stress placed upon individuals who are on the autistic spectrum by the need to socialise, or how to come across in public — Asperger’s and other autism spectrum conditions are thought to be the result of lacking the same amount of mirror neurons as most of the population. Being on the spectrum would also explain an enormous amount about me, my personality and my past, far more than a mere diagnosis of having had a first episode psychosis — on the point of being dissuaded from seeking a diagnosis I feel as though the healthcare system has failed me.
If I had been given a diagnosis has having Asperger’s I may have been able to avoid the pitfalls I’ve encountered in being medicated for a psychotic illness — or I could have been left alone by the early intervention team which is something else that I asked for, but didn’t receive. A large part of the problem, it seems to me, in tackling mental health problems is in treating people as if they’re patients even when you’re out of hospital; this only ensures that whatever problem there is only festers and gets worse. The solution to this is, I think, to have a greater engagement from trained psychologists who will be able to discuss the underlying issues that lead to psychosis in the first place. As for Asperger's and other ASC’s I imagine that they’re very often coupled with other mental health problems, as has been the case with me; far from being something which can be taken in isolation as a condition people with Asperger’s probably have many more co-morbid conditions which may be related to the problems associated with Asperger’s.
Another solution to this could be to screen for Asperger’s and ASC’s in early intervention services — you may simply think that this is only another label, but it might be the right label, and this form of labelling is far less dangerous than labelling people with something that’s wrong. In my experience of having mental health support workers show up wherever I happened to be living the experience was comical — nothing about it seemed as though it was designed to help — in fact I’ve often been tempted to think that in some ways these services exist to ensure that people remain unwell and don’t move on with their lives. For me the system just got in the way of my life and slowed everything down — being told I was mentally ill removed a great deal of my personal freedoms and my ability to speak out against the system — I also discovered that workers within the system are willing to coerce people into taking pills under the threat of being sectioned. Had I had a formal diagnosis of Asperger’s during this time I may have been able to fight back against the system, as it is they still haven’t provided it, and as a result I still don’t have the ability to keep this country’s mental health services away from me.