Published on 12, July, 2020
A question I would ask is do you take possession of the label or labels for yourself or should it just be down to a professional's opinion as to whether the label(s) fit(s) ? If the latter it very much depends on whether you are lucky enough to come under the radar re fitting criteria or not. The truth is many people's symptoms go undiagnosed for years due to incompetencies and shortcomings within the system. It is not that these people are free from difficulties/problems rather than their problems have been missed/overlooked.
My diagnostic letter gives both DSM-5 and ICD-10 classifications. The letter also points out that the ICD-10 coding of Asperger syndrome is a better description of my strengths and difficulties, rather than DSM-5 which simply refers to the whole spectrum.
I would much rather have the more specific ICD-10 label than something as broad as DSM-5 which seems pretty pointless ("you may have very severe difficulties, or none at all, in a whole range of different areas of your life..."). Honestly, I know they mean well, but that's as much use as a chocolate teapot(!).
Asperger syndrome it is, then. The history airbrush artists can go whistle.
'D' being dyspraxia, and N 'NVLD', I presume. That's funny in a way: they can't fully describe or understand the set of characteristics indicated by one label, so they come up with another. A multi-dimensional approach would probably be most in keeping with the complexities of the human mind, and with everyday language ('not very good with his hands', 'rather intense'), but discrete categories of 'disorder' has mostly been influenced by definable pathogens (or single genetic mutations) producing a set of symptoms and a prognosis.
Should we 'take possession' of the label? I suppose so, and we do this by using it in the real world, telling people, or accessing autism-specific support. The professionals do admit autism is somewhat subjective and can be subtle at particular stages in life. When I got my diagnosis, I thought that well, this is on my medical notes, but how much of a tool it is I use to understand myself is up to me. Given my low opinion of psychiatric practice generally, I had wondered about rejecting it as a misdiagnosis altogether, but it's been hearing the experience of other people who have stories to tell that I can relate to, for example how 'alexithymia' defies common sense, that's confirmed my identity as autistic. I should stop thinking that because X is an autistic characteristic, I might be very X and not realise it, because I may be unusually the opposite. And I don't necessarily accept it as lifelong as in the usual definition, despite being dogged by the same problems: some of it could be acquired, and some of it learning may change.
'Autism' collectively as I see it is really about appreciating differences in aptitudes, sensitivities and interests, and ensuring society still adapts to the individuality of the human being. All the researchers I've come across admit there are multiple 'causes' with very diverse 'presentations'. Check out the concept of the 'autistic constellation' - we're people who are just a bit out of the average and not on the usual wavelength in a whole variety of ways. However, because of what society currently requires of the individual, the range of labelled variation is biased towards the quieter, internally-focussed characteristics.
Although I am a bit geeky, I don't really identify with the male Asperger stereotype - I dress very casually, I like variety, I can say what I think tactfully and expressively, I'm flowing rather than stiff. So I probably reject that from my diagnosis, because it's missing the ways in which I do differ greatly, which are more subtle.
Rather than DSM-V or ICD-10, both of which are very limited, if we want something that will be helpful in self-understanding beyond saying we're different in a way different from how many different people are different, the 'diagnosis' would include a wide range of personality characteristics and aptitudes. RDOS 'Aspie test' and the learning disability and intelligence profile are only part of this - I'm thinking of at least 20 variables. I'm very intellectualising, very disorganised and spontaneous and bad at self-monitoring, as well as currently lacking much intimate contact or means of expression. If professionals had responses to each variation, in terms of lifestyle recommendations or services, the diagnosis would be much more helpful and followed by individualised counselling. Instead, at the moment, autistic people are told to socialise with each other, which is fine, and end up working out the constructive responses themselves. Thus researchers who want to understand the diversity of autism would do well to ask autistic people.
I would definitely say I have intimacy problems. Asexuality is a grey area,it depends on the definition used(there is no consensus).