Thanks, and yes our experiences of being on the spectrum and perspectives will be different, but I think that’s part of the problem. The spectrum has now become so wide with vast differences between one end and the other it’s very difficult for people on the street to understand. It might make clinicians and assessors jobs easier now, but that’s no help to us.
I never say I have autism because I’m of an age when having autism equated to low function and what went with that. Also the Aspergers or high functioning end equated to in general, not needing a caregiver, being verbal, potentially able to hold down a job and be independent etc. Just to be clear I in no way consider myself better or worse than anyone else, what i mean is that for people on the street if I said I had autism, they would say no you don’t! If I said I’m on the high functioning end of a spectrum and I gave examples of my difficulties, as Fridgemagnetman said, and as I’ve been told “everyone’s a bit like that” so it becomes incredibly annoying and frustrating. I could could carry around a laminated copy of my assessment and diagnosis papers as ‘proof’ but why should I?
I don’t know why you think they study us or draw any conclusions, I think people couldn’t care less and we are one of a plethora of ‘special interest’ groups jockeying for a place on the league table of the worthy, and the way I see it we are near the bottom. There are people such as Lucy who are interested and receptive to us, but I don’t think we should we should reach out or seek them, I think we should treat them fairly and with compassion when they reach out to us.
I agree entirely - the spectrum encompasses so much variety that it is very hard to really grasp what being on it means, and when many of us don't really understand it, it isn't hard to realise that the 'person on the street' simply can't really be expected to.
My experience as an Aspie exposed me to a great deal of very abusive treatment, but that was before I (or they) knew I was on the spectrum. If those people had known, I doubt it would have changed their behaviours or attitude, so in that respect, being on the spectrum has been a very negative experience. However, since I have known I am an Aspie, my experience of others' attitudes and behaviours has been quite positive, so I have not the same reticence to identify myself as such as you do. That said, I respect the choice you make, and understand the reason you make it, so it is not that I believe you to be wrong in any way.
For me, I have no problem with my employer knowing, and in fact it has helped me a great deal that they do know in that it has increased their trust in my capabilities and focus on my work, and reduced their need to monitor me. Likewise, my partner, now wife, also knows, not least because she is also on the spectrum, and thus knowing I am helps her understand me better. I would have to say also that if a potential partner were to react badly to knowing I'm an Aspie, it wouldn't be someone I'd want to be with anyway, and a relationship wouldn't be functionally possible because whether I have that label attached or not, I'm still exactly who I am.
All that said, I am and have been very fortunate in life, work and even to some degree relationships, so ultimately it's inevitable that I see these issues from a different perspective.
As to those who study us, we, as a group, have been the target of studies over the years by many people and groups, largely by people who don't have a clear idea who we are, and who have drawn all kinds of conclusions about what autism is and what it does. These days, there are far more autism-friendly researchers than there have been before, so that where in the past many people have talked
about us, now far more are prepared to talk
to us. In its own right, that's a significant change in the wider attitude to autism.
Anyway, despite the difference in perspective, I greatly appreciate your comments and insights, and the time it has taken to explain your views!
