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If there was a cure for autism...

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icicle:
I didn't get diagnosed until I was 40. I would loved to have received the diagnosis when I was younger. I have been misunderstood by and mistreated by people. I did not like the things that society tells you will make you happy and was thus very miserable. When I was younger I would have wanted to get rid of the Autism. Now, I think the focus needs to be on educating neurotypicals and getting them to be accepting of difference instead of rejecting people who don't behave like them/ are not like them. As for positives: Perhaps we are kinder and more accepting of others, more tolerant and less likely to bully. People with Autism can be interesting to talk to, as they can know a lot and be interested in specific topics. I think that they tend to be genuine rather than trying to be the socially constructed norm. I don't think that we are as shallow as them. We are more truthful.

Lorien:
In terms of tweaks to advice and guidance from professionals - I think really it's more of a rewrite. It is hard having the self awareness to see what is and isn't helping. It can take time, but the harder process for me has been getting other people to respect that. Mostly for me this was prediagnosis. One Psychiatrist gave me the freedom a d the space to focus on the important things. Everything that was irrelevant he accepted in whatever way I was comfortable. I sat on the floor, I brought things to fidget with, I didn't make eye contact, I wrote 80% of what I wanted to say...and all of that was perfectly fine by him. He saw me once a month and spoke on the phone etc in between if needed. If I said something wasn't working for me he accepted that and explored another plan. This gave me a really good grounding in working out what is helpful to me, how I can tell and what it feels like to have someone respect your judgements and work with you. During that time I had some CBT. As far as I know CBT is rooted in theories that don't hold for the autistic brain. I was given homework to stand in a supermarket to prove to myself it was t so scary. But all it did was reinforce I couldn't cope with the sensory overload. I was consistently asked - if I asked 100 people x question, what would they say? I suppose a tweak here would be to consider - if you asked 100 autistic people, but I still think you might have had to actually ask them for me, because I wouldn't do well at guessing if they agreed or not. I now go against all of there advice completely and use every strategy and "crutch" I can to get through situations that are difficult.

Later I saw a different Psychiatrist after them and he wasn't able to allow any of the things I had been used to, written communication was annoying so no longer valid, the only place it was OK to sit was the specific chair he said and he wouldn't even write down the gap to the next appointment so I could show it to the secretary to make the appointment. He pretty soon decided I was too 'difficult' and asked someone else to see me instead. When they messed me about I walked away. I decided now with a diagnosis, I needed to work out what I could do on my own and accept that apart from that one person - they were making things worse not better.

I didn't get any post diagnosis support because there isn't a y here and I had discharged myself from Psychiatry by then. It did help that I felt I had to make it work, because no one would accept the level of s/h I had been doing with no Psychiatrist involvement. But for a while before I'd been experimenting with what works for me before it was official while I still had a Therapist.

The first major revelation for me was allowing myself to do whatever I would do post s/h first. I used to reason that there was no time, it was stupid, I had to be up in the morning etc etc etc. But most times I'd get back from the hospital, have a takeaway because I couldn't bring myself to cook and curl up under blankets, sometimes loaded with books and watch Disney or how its made videos. Even though it was hard I decided that I had to have seen that through first. Then I found I didn't get there. I made a weighted blanket and used that, I started to want to s/h less. Then I stopped surpressing stims at home. Shouting a made up word - fine, jumping - fine, spinning, flapping, rocking, anything fine - because it doesn't hurt anyone. I also investigated pretty much every stim toy and sensory aid I could find. That reduced the times I consider s/h to about 4times a year which so far I have managed and when I have been significantly low and that is definitely on the horizon - I take temazepam and go to sleep. Usually it's better in the morning. To be honest it's a slow process, but it is one that is worth finding space for. I was convinced I'd never make 30, I was sure I'd spend my life screwing up until I died. But now, I'm engaged, I have a full time job I love, my employer is funding my degree, I have friends and on average one bipolar related high and low a year. I can work with a different Psychiatrist just to get the bipolar stuff right, knowing I can walk away if I want to.

icicle:
What if there was a cure for neurotypicals? https://medium.com/@troycamplin/a-pathological-look-at-neurotypical-behavior-ee77d41e7e81

Lorien:

--- Quote from: icicle on May 14, 2020, 07:52:31 PM ---
What if there was a cure for neurotypicals? https://medium.com/@troycamplin/a-pathological-look-at-neurotypical-behavior-ee77d41e7e81


--- End quote ---
:rock:

Vermilion:
I seem to have spent my life being misunderstood by others; friends, family, employers, teachers etc. The worst was when I was misunderstood by professionals because they're experts and so if they think that I'm being difficult/need to grow up or whatever then it must be true... Right? Looking back it almost seems like a sort of gaslighting. CBT never worked for me either because, as you say, it reinforces the struggles with sensory issues that we cannot just switch off. It's taken me a long time to be willing to trust professionals after years of not being listened to or dismissed as 'difficult' or 'not engaging' and this seems to be very common for people with 'high functioning' ASD. I really hope there'll be some improvements but it'll take a long time I suspect.  These experiences have reinforced a negative image of myself that I was already struggling with and still am. I suppose that it's going to take a long time to accept the ASD part of me which, as things currently stand, I utterly despise. But reading this thread has at least helped me to understand a bit more and at least there seems to be some hope.

I loved that article! The whole small talk thing always seemed pointless to me too, why as how someone is when you obviously don't give a crap? I also have never seen the point in bitching/slagging off behind people's back, I've always thought that it's just easier to be honest with the person so that the issue can be resolved which won't happen if you don't say anything to the person and just go behind the back. Then I think that they're probably doing the same to me so how do we tell who is genuine and who isn't? The article did raise a few good points, autistics are certainly more honest, though I do need to learn to be more tactful!

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