Long after I quit my obsession with ASDs, I remained an avind reader of Autistics.org. It has little to do with autism itself, but is related to the fact that everyone, regardless of their difficulties, should have their needs recognized and their individuality validated as people with real difficulties, which is of course grounded in my own experiences. This autobiography is the most striking example of what I mean. This woman has been in about the most difficult circumstances for getting the help she needs, and she’s still suffering from this at age 41.
She’s by far not the only adult with Asperger’s Syndrome who goes undiagnosed for this long. Tony Attwood predicts that, in the next so many years, there will be a rise in people born between the 1930s and 1970s getting diagnosed with AS because their disorder was not yet recognized when they were children cause it wasn’t even in the DSM. There were, obviously, high-functioning autistics being diagnosed back then, but these were the people with more severe communicative disabilities (Kanner’s autism) who didn’t emerge as high-functioning till they learnt to talk. The most famous example of this is Temple Grandin. For those who spoke by age three, their main characteristics in childhood were behavioural and social problems which often did not lead to the belief that the child was autistic cause many do show some form of social interaction besides their good language abilities. No-one even in the professional world outside of Austria and Germany knew that AS is a form of autism in its own right till Uta Frith translated Hans Asperger’s original article (dating from 1944) into English in 1980. So, not surprisingly, many parents did not recognize their children’s need for help and crafted their own theories. Of course, this particular woman lives in extraordinarily difficult circumstances where her stepfather has as much a problem of his own with his paranoid theories as she does with her AS, but it is pretty understandable that parents make up theories when they see behaviour in their child that they cannot explain and that, furthermore, even the professionals they consult cannot explain, and these professionals most likely still don’t understand the behaviour when the child becomes a young adult and herself requests help cause, most likely, they haven’t heard of AS by then yet. In fact, the woman whose autobiography I read was pretty early, first hearing of AS at age 29 (ie. in 1994) in exactly the same year that it was put into the DSM.
There are other factors relating to this particular story that are concerned with the psychiatrists’ focus. When they see bad behaviour, they diagnose bad behaviour and, when they don’t care to take a closer look, the person gets sent off without a proper diagnosis. Recall that this woman saw most of her 70 psychiatrists only once, which doesn’t allow for enough time to make *any* valid diagnosis whatsoever. I recall the opposite of this story happening in 2003, when Menno Oosterhoff (a Dutch psychiatrist) “diagnosed” Volkert van der Graaf (Pim Fortuyn’s murderer) with AS via the media without ever having seen the man.
Then, once the woman finally got it through to anyone that she wanted to be evaluated for Asperger’s Syndrome, she was denied access to most doctors cause they demanded she bring her parents. While I see the important role parents play in an AS diagnosis – mostly, to validate that the person has been exhibiting the behaviour since childhood -, there is no reason why a doctor should refuse to see a patient at all cause he cannot (yet) meet the patient’s parents. After all, if there initially is no reason to think of AS based on not meeting symptoms, there is no need to get the parents involved to see if the person’s met criteria since childhood, and if she does turn out to meet the symptoms now, she is at least validated in the fact that she does have social and behavioural problems corresponding to AS, even if the doctor may not be able to diagnose her with the disorder cause it’s not clear whether it’s learnt or has always been there. Having a doctor at least state that her problems are real, might get her some of the help she needs, even if a label may be needed for directed services.
And even if there were no label to be stuck on this woman – if she didn’t have Asperger’s Syndrome or any other clinically identifiable condition -, it’s still quite obvious that this woman needs help. In the Netherlands, the word “psychosocial problem” is in the CIZ guidelines. I’m not sure how much can be achieved on the basis of “psychosocial problems”, but we have to recognize that people are not fitted to the mould of the most recent edition of the DSM. Just like Aspies existed long before 1994 or even 1944, there are many people in the world who have genuine mental health problems but may not fall within a category in the DSM-IV. Are these people left to their own resources as “non-mad”? Apparently, and that’s exactly why I keep being an activist for valuing each individual with his or her own individual difficulties and needs, regardless of my own situation and whether I’m ever going to get a step closer to any form of clarity on it.
