Author Topic: If there was a cure for autism...  (Read 2039 times)

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Offline icicle

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Re: If there was a cure for autism...
« Reply #10 on: May 14, 2020, 02:32:04 PM »
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.

Offline Lorien

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Re: If there was a cure for autism...
« Reply #11 on: May 14, 2020, 03:02:01 PM »
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.
« Last Edit: May 14, 2020, 03:13:06 PM by Lorien »
“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

“It is our choices...that show what we truly are, far more than our abilities.”

“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”

Offline icicle

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Re: If there was a cure for autism...
« Reply #12 on: May 14, 2020, 07:52:31 PM »

Offline Lorien

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“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

“It is our choices...that show what we truly are, far more than our abilities.”

“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”

Offline Vermilion

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Re: If there was a cure for autism...
« Reply #14 on: May 15, 2020, 02:07:46 PM »
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!
'Inside every cynical person is a disappointed idealist' George Carlin

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Online Tucan

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Re: If there was a cure for autism...
« Reply #15 on: May 15, 2020, 02:37:04 PM »
I also need to learn to be more tactful at times. I am too honest sometimes.
now hand over the tea bags and we won't have any trouble.... :police:


'Sigh no more ladies sigh no more for men were deceivers ever'

Offline icicle

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Re: If there was a cure for autism...
« Reply #16 on: May 15, 2020, 03:02:54 PM »
I've been misunderstood by people, which led them to being cruel to me. I even experienced someone who was of the opinion that no one else should have to put up with me. There really is no need for the cruelty that some neurotypicals have towards those that they do not understand. It takes two to communicate.
Honesty is a good thing; I don't think that you can be too honest.

Offline Lorien

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Re: If there was a cure for autism...
« Reply #17 on: May 16, 2020, 01:40:29 AM »
 I don't think you can be too honest either. I think there is a balance to be had though. Tact is useful because I don't want to upset people, but if they don't want an honest answer then it may help for them not to ask
 :whistle:
The best help I've had with this is a manager at work. If there was ever a situation where there was miscommunication / misunderstanding with someone else - she always gave me the benefit of the doubt, let me explain what I meant and then explained how the other person saw it. She would then model how she would have said it to them. I'm a pretty good scripted mimic so I built a bank of useful ways to handle things. Over time people learn your intent is good and help where they can. But it's important to start from the stand point you are willing to adapt. That doesn't mean you can't be honest and it doesn't mean you have to be someone else. But both sides have to give a little to make communication work.

The good Psychiatrist also did something similar if I had taken something he said differently to how he meant it. I'd repeat what he said verbatim and he would consider it, then explain the less literal meaning of what he said which was what he meant. When I've tried this with others they just refuse to accept they said the first thing, because that wasn't what they meant. I've learnt to literally ask - when you said "xyz" I'm not sure I understood properly could you explain a different way. It sucks sometimes that you take the fall for their lack of clarity but people will help much more easily if you make it not their fault. It also seems to make them more likely to try to understand what you're trying to say and mirror your "I've misunderstood this". Communication does take two but so does conflict.

Re gaslighting: it so effing is. Unintentionally probably but spending years of your life with your every move being interpreted through the lens of the wrong diagnosis is gaslighting. It is making you think you are going crazy. It is making you second guess yourself, your intentions and interactions. It does have exactly the same effect as someone doing it deliberately. But what doesn't happen is the resolution that comes from moving away from the gaslighter a d seeking support from someone else who shows you it was them. For many if not most people, the best that can be achieved in that sense is acknowledgement that the dx was wrong and it being removed. I don't know where anyone would start to undo it. I stop it winding me up (some of the time) by considering their intentions. Some people had very good intentions so I let it go. Other people are just c**ts and I try not to  :banghead: because it hurts me and not them.
“Dark times lie ahead of us and there will be a time when we must choose between what is easy and what is right.”

“It is our choices...that show what we truly are, far more than our abilities.”

“Happiness can be found in the darkest of times, if one only remembers to turn on the light.”

Offline Gerard

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Re: If there was a cure for autism...
« Reply #18 on: May 16, 2020, 11:18:44 AM »
Funnily enough, I was once introduced to a clinical psychologist who had received a diagnosis herself. It was one of the most heartening moments I've ever had. I'd have loved to talk to her properly, even just about life, not dx. Unfortunately, I don't remember her surname and it's unlikely I'll bump into her again.

I can't remember if it was her who said it or someone else, as a professional with a diagnosis having had crappy reactions from peers. You'd think they'd be understanding, but it seems not all are and Lorien has hit on the word for some of them.


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Offline Vermilion

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Re: If there was a cure for autism...
« Reply #19 on: May 16, 2020, 07:56:23 PM »
Quote
they don't want an honest answer then it may help for them not to ask
I have no idea why people do that! So infuriating! When I've asked people why they said that they reply that they didn't mean it- why b***** say it then!?  :banghead:

The incorrect dx thing has had an effect on my MH care too. It was initially assumed that I had EUPD and it was added to my medical records without anyone informing me and I only found out when I had a print out of my records. I'm still annoyed about that and would really like to get expunged from my records. It was a case of oh, it's a woman who self harms? It must be EUPD irrespective of the fact that that she doesn't fit the other criteria... As a result of the negative consequences and effectively gaslighting me I feel that many of my problems have increased. I try not to feel angry but I can't help it, I wonder how much could've been prevented if only I was listened to and allowed to voice an opinion. It even simply informed so that I could ask questions. Professionals really need to discuss things with patients.

I am surprised that a clinical psychologist could have ASD, I would think that the social difficulties would make a job like that...well... Difficult. It just goes to prove that everyone is different and that assumptions need to stop. I think it would be really refreshing to talk with someone who's similarly minded, I suppose that it would be nice to feel less like a visiting alien once in a while.

I feel people are always cruel to others for some reason or another, in the past (and unfortunately still is) it has been for things such as race or sexualities and historically society society has never been very accepting of MH or 'invisible' issues. Honestly, I'm tired of being labelled as a 'millenial snowflake' but I also wonder if it's true sometimes. I really have difficulties but is it autism or is it me? Do I accept these issues are a part of me or do I try to change it? I'm posting these questions rhetorically of course because there are no easy answers.
'Inside every cynical person is a disappointed idealist' George Carlin

*Professional grouch*