Published on 12, July, 2020
I’ve yet to have my diagnosis so lurk around the internet trying to persuade myself I am not a fraud, or a non autistic person that can’t get her s**t together.
I Wish there was a clearer definition and a name for this condition / disorder that doesn’t include autism. It’s not that I don’t want the autism label but I feel that, without a definition of the fundamentals that put us all on the spectrum in varying degrees, trying to explain myself to anyone (and fundamentally to myself) is difficult. Throughout the course of a month I can appear very normal and handle things (people, noise, stress etc) , to escaping my work at 5 with as little interaction as possible and saying random things to myself in my flat to vent what I haven’t said heoughout the day. If I discuss this with anyone close to me they say ‘aw I do that’ or ‘everyone has their little idiosyncrasies’. More doubt...
I would prefer it if this part of the spectrum could be better defined and named. The part of the spectrum that includes the females who don’t have special interests, can make eye contact and don’t stim. No great intelligence / IQ. Those that, although they can’t, would like to communicate better.
Wouldn’t directing people to the help they specifically need be easier if ASD was better defined? Or disorders named. And taken off the spectrum?
I find the fact that it’s so difficult for practitioners to identify (in women) disheartening and it doesn’t fill my confidence. Surely better definitions would make research and identifying support much easier too?
I can relate to what you are saying. It is difficult to a) define oneself and b) explain oneself to others.
I have been doing a lot of reading recently about the history of autism (by the way I have found one book to be really helpful and fascinating on this subject - 'Neurotribes' by Steve Silberman) and it shows that for decades professionals and individuals have tried to find the right terms to include or exclude various aspects of autism. My own view is that health professionals need a lot more education about what autism is. If they could be encouraged to move away from many of the different terms in use, then they could see that autism is a spectrum (or perhaps even a syndrome?) with many different facets. In the same way that all women or all men are not the same, there is a huge variance in how autistic people feel and display themselves to others.
I hope this helps. I just feel that more definitions and sub-categories might be counterproductive - whilst if 'autism' is embraced as a syndrome that has multiple dimensions, we can actually help each other a lot more by focusing on what we have in common. There is a huge exercise needed to educate the wider population too so the more we talk about how we feel to others, the more we are helping to raise awareness.
Thanks Andrew, I will look out the book. I'm relatively new to the forum but I've been doing my own research into ASD (since it was suggested I had Asperger's, a now defunct definition), many web sites and books and many not applicable to how I present.. So, I welcome any recommendations.