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?
Autism is a word for the condition that affects us. It can affect us in many different ways. Whatever word was used for this condition, it would be used derogatarily and to judge us. I don't have any problem with the words autistic or autism or the fact that there are different ways we are affected.
I have a greater problem with the terms 'mild', 'severe', 'slight' or 'major' autism. These tend to make others think that we either don't need any help at all so our needs are dismissed, or that we have no abilities so our skills aren't recognised. I don't feel that I am 'slightly' affected - sometimes I suffer bouts of deep depression and anxiety, I can feel that I want to escape the world and others find me impossible to be with or console. I can misunderstand what others are saying, respond in supposedly inappropriate ways and retreat to a world where no one else is welcome. Yet I am 'high functioning' and appear 'normal' to many others on initial acquaintance but soon appear as 'strange' to them.
A diagnosis goes a long way to helping explain to oneself the reasons for one's behaviour. Being diagnosed left me with a feeling of relief on one hand, but also a feeling of the missed opportunities I had in my younger life and a feeling of 'what might have been'. But I am glad I had the diagnosis because of all the things it helps explain.
I can definitely relate to most of your comments above. I wasn't diagnosed until a couple of years ago at age 55 & really wish that it had been identified earlier.
I used to think that I couldn't be on the Spectrum because I am 'High Functioning', can read body language quite well, very much enjoy socialising & generally pass for normal most of the time. As with your comment above though, it doesn't take long for people to notice that I am a bit strange compared to them.
Had I known when I was much younger, I wouldn't have wasted most of my life trying to create new versions of myself in order to belong within given social groups, but still always feeling like an outsider. Nowadays, I quite happily tell people & enjoy challenging their preconceptions about people on the Spectrum. I think they are generally happier to accept a bit of strangeness when they have an explanation. Obviously there will always be some people who cling to their negative stereotypes, but I am too old to care about their opinions any more.
Even two years after my diagnosis though, I am still trying to understand exactly what it means for me. Probably because I spent so much of my life trying to be a chameleon of sorts, I have a very confused sense of self. It's impossible for me to unpick which parts of my identity are due to being on the Spectrum & which parts are just supposed to be 'me', whatever that is!