âWhen I tell someone about my diagnosis, they (usually) have an idea of what it is. This is [in part] thanks to high-profile news stories, such as Gary McKinnonâs.â Photograph: Andy Rain/Epa/Corbis Last week, I bought a T-shirt printed with âI had Aspergerâs syndrome before it was coolâ. For me, and many like me, the diagnosis is much more than a label. It can be a source of pride; a badge of honour for surviving in a world that, for us, seems chaotic, overwhelming and downright scary. It can also be a part of our identity. When I meet a fellow Aspie, I feel a sense of fraternity with them. This person, unlike the other 99% of people, sees the world in the same way as me. We face the same challenges, we think the same way, and we often have to campaign together on issues affecting us. Iâm proud to call myself an Aspie.
Over the last few years, Iâve seen the term Aspergerâs syndrome used and understood better by the public. When I tell someone about my diagnosis, they (usually) have an idea of what it is. This is thanks to high-profile news stories, such as Gary McKinnonâs, an increasing number of documentaries featuring people with both autism and Aspergerâs syndrome, and the awareness raising of charities like the National Autistic Society.
Itâs because of this that when I first learned over two years ago of the proposal to remove the term âAspergerâs syndromeâ and âautismâ from the psychiatristsâ Diagnostic and Statistical Manual (DSM) of Mental Disorders and replace them with âautism spectrum disorderâ, I was set against it. People with Aspergerâs syndrome find change very difficult, and this was a big and unwanted change to my identity. However, as well as being an Aspie, I am also a psychologist. As such, I felt I needed to set my personal views aside, and investigate how we classify Aspergerâs syndrome.
Contrary to my views as an Aspie, after looking at the research I was forced to conclude that actually, the DSM-V is a big step in the right direction. For years, studies have been suggesting that autism and Aspergerâs syndrome are the same condition, differentiated only by level of impairment. Itâs what I see in everyday life too. My brother, for example, clearly has some form of autism, but could fit both diagnoses equally well. Therefore, it does seem to be a positive move.
While from a professional and (somewhat begrudgingly) a personal standpoint I can support the DSM-V, I still have concerns. I worry what will happen to people like myself who currently have a diagnosis of Aspergerâs syndrome. Will this diagnosis be continued in good faith, or will I have to be assessed for an autism spectrum condition? If I do have to be re-assessed, there is a good chance that myself and many like me will come out without any form of diagnosis. While for me, Aspergerâs syndrome does not cause any significant impairment, it is still a very different way of thinking to everybody around me. What then should I call it? A personality quirk?
Others may not be so lucky. Some people with Aspergerâs syndrome may lose any sort of diagnostic label, but still require support, which they can only access via a diagnosis. Here I have to trust that doctors and administrators will use their discretion to ensure that people who need support will still be able to access it, even if they donât meet all of the new diagnostic criteria.
The term Aspergerâs syndrome is not going to be lost overnight. Many diagnosticians in the UK use the International Classification of Diseases (ICD) classification, rather than the DSM, which still uses the term Aspergerâs syndrome â although I expect this may change in the next edition of the ICD. Equally, I know many people with Aspergerâs syndrome who believe that the term will not be lost: kept alive by diagnosticians, and themselves. While I hope it remains in our lexicon, I donât share their optimism. After speaking to teachers, researchers and psychologists, I think it is likely that the term is going to die out over the next decade.
So where does this leave me? I donât see this as an end to the camaraderie I have with my fellow Aspies. Instead, I feel we are opening up the fraternity of Aspie to our autistic friends. Donât get me wrong, I will try and get as much use out of my new T-shirt as I can. However, when the time comes, I will be able to put the T-shirt away. I will be proud to call myself someone on the autistic spectrum.