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Still searching, even after diagnosis

I'm done with Christmas Cards

So nearly two months after diagnosis I still find myself searching for *something*.

It's not exactly "certainty" as I know that's impossible. But two or three things have conspired to take the edge off the sense of objective endorsement of my own experience that I felt following my diagnosis:

1. The feeling of the circular argument "I'm me, and I'm just a normal person, therefore I'm normal" came back a bit

2. I've read some of the debate around the apparent changes in the way the diagnostic criteria are interpreted(*) which some say includes a broader range of people in the diagnostic envelope

3. I find myself going over old ground, trying to justify to myself that I am autistic, despite now having a positive diagnosis.

But part of me can see that this is almost humorous, because I *know* that I am different. I know for instance that despite my academic qualifications I never approached my academic work in a "typical" way, and that my understanding of the technical things that I studied was very narrow and achieved in an unconventional way that I can't quite describe, and if I try to apply my analysis skills to new subjects I often feel like someone who doesn't know what they're doing. In other words I'm not the person I thought I was. My analysis skills and cognitive abilities are very "spiky", and I've had a successful career by finding ways to show off the spikes whilst avoiding the valleys between them.

I've spent a few days reading research work about the heterogeneity of autistic symptoms, and thought I had found a clear answer with one paper that presents results indicating that there the main variation in autism is the varying levels of impact (in other words supports the model in DSM-V) but then I read articles arguing that DSM-IV was right and we should go back!

One of my natural instincts is to try to form a synthesised model of this and have it as something that I can believe in, perhaps blogging it to help others, but having stumbled onto Twitter and seen the antagonism between different camps of people with different opinions about autism, I am reluctant to put myself out there and also find myself struggling to find something stable that I can hold on to. Ironically, my abject fear of someone making negative comments on, or even politely disagreeing with, things I write on social media is, I believe, part of my autism! And I need to keep reminding myself of how very much lower my stress levels are now that I'm not on social media!

The other way round this, of course, is to stop trying to understand everything, accept that I was diagnosed objectively by the NHS using DSM-V and my ADOS score was in no way "marginal" and cut myself some slack, and realise that it's not my responsibility to understand everything about autism and explain it to the world and settle all of the arguments! Having written that down, I can't believe that there's something in me telling my that I should, and could - because that's plainly ridiculous and so far beyond my capabilities that again it's laughable.

(*) and I must mention in passing that this statement, in one of the references supporting yesterday's Guardian article, gets me quite angry because it trivialises the struggles that we have: "Fifty years ago, one sign of autism was a lack of apparent interest in others. Nowadays, it's simply having fewer friends than others." Having been through the diagnostic process and had an awful lot of scrutiny applied to my symptoms, I can say with certainty that "having fewer friends than others" is in no way sufficient to satisfy even *one* sub paragraph of the diagnostic criteria!

  • in reply to johnsb

    A Field Guide to Earthlings by Ian Ford is a good book to start with. There are books already out there, then you apply what you learn to your own life experiences. I don’t know yet whether I will write anything myself. Maybe. 

  • in reply to Justanothernobody

    Will you be writing a book, as I need to read it? I've recognised features of myself from descriptions of autism, so assume they must be different to most people, but I've no idea in what way they're different!

  • You might just be best off accepting your diagnosis, but trying to find ways to make yourself seem as neurotypical as possible without compromising your happiness?

  • in reply to Senor

    I think I identify with how you feel.  I’m not studying autism any more. I got the label with no real chance to discuss it with the assessor. I’ve not been able to discuss with anyone how to deal with life better. Just a blank ‘here’s your diagnosis, now disappear.’ 

    So I decided to study NT behaviours instead. What an eye opener! The books written by auties really have helped me. In fact, once you understand that people play social games and what they are really doing, well it’s made me feel free. It’s also quite amusing now just to observe things happening around me. Psychologists and developmental specialists study autism. I study the psychologists, psychiatrists and all the rest I have observed my whole life. It’s a real lightbulb experience! After all, in all their criticism and so called treatments nobody ever told me what THEY classed as normal, mainstream, NT behaviour. How the heck was I supposed to know? 

    So I guess, in short, my focus is now off myself and on THEM. 

  • I was told at the diagnostic session that i would almost certainly experience some months of cycling acceptance and rejection. Two years so far, but I think the daily cycle (Some doubt in the morning, strong acceptance in the evening) is beginning to diminish. I was also given a diagrammatic representation of that process. I imagine it is taking longer than usual for me because I'm really quite isolated in the place I live.The best support would just be someone prepared to discuss it, F2F, very occasionally. It appears that is not possible here.

  • Yeah I have had quite a few moments of doubt in the last year, and have so snap out of it by saying to myself "a highly trained professional clinical psychologist says you are autistic so who are you to question it" 

  • in reply to Plastic

    Indeed. For me it is my inability (but not all of the time??) to discern the motives of others that gets me, plus my inability to invest effort in friendships or even be particularly motivated to do so, and how much more interesting it is to be reading academic papers, or chasing Wikipedia threads about tesseracts and manifolds..........

  • I've found that looking at the places where I stick out like a sore thumb to be the biggest confirmation of my Asperger's.     Things like the social stuff, the inability to lie/falsify information, the need to gather data and the massive range of my interests and knowledge are the biggest indicators.    When you look at just those few things, it's clear that NTs just don't do those things - they can lie and cheat, have no interest in their surroundings and can all bluff the social stuff together.      The more NT they are, the more I stand out.