The NSHN Forum UK

NSHN Forum Support & On Topic Forums. Some additional boards are viewable to members only => Survivor Room => Topic started by: Vermilion on May 11, 2020, 02:07:53 AM

Title: If there was a cure for autism...
Post by: Vermilion on May 11, 2020, 02:07:53 AM
After reading many online articles/blogs etc and more books than I can count the subject has cropped up. Providing there were no risks, if there was a cure for autism would I take the tablets/have surgery/whatever?

Personally I think I would. I feel that being autistic has made living a fulfilling life as I want to live it impossible. It has messed up relationships, jobs and so many more things that I don't wish to post here. If I could cure this and no longer have to deal with this crap, I would do it.

On the other side of the debate are those who view autism almost as a gift or at least an integral part of their identity that they love having. This is baffling to me because being autistic is, at least for me, exhausting, confusing, frustrating, distressing and can be downright frightening when having sensory overload/meltdowns etc and knowing that there's no cure makes me feel truly hopeless at times.

I'm not sure why I'm posting this really, it's just something that's been on my mind lately. I figured that maybe someone here can understand a little since there seems to be quite a few people here with autism diagnoses. I suppose this is little more than a rant that I just needed to type out I guess.
Title: Re: If there was a cure for autism...
Post by: Gerard on May 11, 2020, 07:22:10 PM
'Cure' leaves a bad taste in the mouth, imo. I associate it with propaganda from Autism Speaks et al. And there's an argument that certain things may not have been achieved/invented, etc, without people with AS/ASD.

I do get what you mean, though. AS is a monster.
Title: Re: If there was a cure for autism...
Post by: Vermilion on May 12, 2020, 07:34:36 PM
I'd say that the real question is whether the person is happy or not. I'm not saying the autism is always a bad thing, I feel that the AS propaganda is bordering on eugenics which is an appalling notion and potentially harmful. I personally have had a truly awful time with my ASD but everyone is different of course and some are perfectly content with things. For me though, I would like the autism part of my brain to f*** off and if someone could just cut that part of my brain away then I'd probably do so. ASD is the worst type of monster; one that is everywhere you go, manipulates thoughts, wreaks havoc in life and it will always be there and all we can do is learn to coexist with it and that is just horrible to me.
Title: Re: If there was a cure for autism...
Post by: icicle on May 13, 2020, 08:18:51 AM
I wish there was a cure for how badly some neurotypicals treat people with Autism; they can be so rejecting and criticising when people with Autism don't behave how neurotypicals expect people to. People need to be more tolerant of difference. There's a lot of bullying out there.
Title: Re: If there was a cure for autism...
Post by: Vermilion on May 13, 2020, 10:40:05 AM
Yes, that would be very helpful too. There's intolerance throughout society in general be it towards autism, down syndrome, disabilities etc, not to mention things like race, sexualities etc and if we could somehow eradicate these things the world would indeed be a better place for all.

That said, I also can't blame society for everything that's wrong in my life; I cannot blame it for my social skills for example nor could I blame it for my lack of understanding of the world in general. If most people enjoy music being played then I shouldn't expect it to be turned off for my sake, others may enjoy sparkly flashing lights at Xmas and shouldn't turn it off for my sake. In this sense life would be better without autism for me. Should the rest of society be expected to work around the minority? I've often been told that no, it shouldn't be, that I should just come to terms with the way society is.

Of course, I'm having a really difficult time lately (as posted in the full member room) so perhaps my thinking is skewed on this subject right now but I am really struggling to see anything that makes me happy to be on the spectrum. Thinking about it, in some ways it's harder on the 'high functioning'/Asperger's part of the spectrum because it's not severe and therefore we should be able to get on with it(or so others believe) and many (I have family members with this view) believe that it isn't a disorder at all.

As things stand I really do feel like I don't belong on this planet and if there was something that could change that I wouldn't turn it down.
Title: Re: If there was a cure for autism...
Post by: Tucan on May 13, 2020, 11:10:23 AM
It is hard being on the spectrum. But being different isn't necessarily bad. I have met some really understanding and caring people through being on the spectrum. Knowing what it is is helpful to me, and helps me to understand why I am different and how to come to terms with it. I hate the way I will always be on the edge of social circles but one to one I am not too bad. I also have bipolar and that really effects me. There are happy people out there with Asperger's. There are also unhappy people out there, people with autism are more likely to have a mental health problem than the general population. That bit sucks. Sorry if my rambling doesn't make sense. I think it is an interesting topic/debate.
Title: Re: If there was a cure for autism...
Post by: icicle on May 13, 2020, 01:47:58 PM
It could be classed as a difference rather than a disorder, I suppose, but it sure makes life difficult in neurotypical society. Hopefully society will become more tolerant and accepting. I certainly won't allow anyone to judge me according to how well I can act like neurotypicals expect people to be- I have no interest in putting my efforts into that. I use noise cancelling headphones to block out other people's annoying noise, either using pink noise or my own choice of music. Interests can make us happy, whereas neurotypicals rely on other people to make them happy. Some neurotypical friends have said that they enjoy my company because they can be themselves around me.
Title: Re: If there was a cure for autism...
Post by: Lorien on May 13, 2020, 10:55:00 PM
Really interesting topic...
If I was offered a cure for bipolar I wouldn't need to think, I'd take it even if there were some problems with it. Autism though for me would be the opposite. I don't think you could offer me anything that would make me want to take it away.

I spent a lot of my life up until my diagnosis at 27 trying to suppress, hide, mask and change things that other people didn't do. It made me very unhappy, added to the other problems I had and made it impossible to just be myself. Pretty much as soon as I understood that it was likely that I had autism, I started to experiment with allowing myself to just be who I am. I'd had a few close calls suicide wise by that point and my self harm was escalating to the point where I needed surgery under general to fix it. But exploring the diagnosis changed that. I think I can be OK now, because I don't need to be anyone else. I don't need to please anyone else and like icicle seems to be saying - I do what I need to manage situations that are hard my way. Mostly that has been in direct opposition to advice from professionals, but they give advice that isn't designed for neurodiversity. So I do what works for me.

I also work in an environment where different strengths and strategies are valued so I am able to be fulfilled and challenged there. I am not expected to be a different person and I don't expect them to bend over backwards for me. But both sides have a preference for the social model of disability. It also helps massively that the service I work for is a service for children and young people who have disabilities - many of them are autistic.
Title: Re: If there was a cure for autism...
Post by: Vermilion on May 14, 2020, 11:59:55 AM
Well, perhaps if I can learn to accept my difficulties and try to be who I am rather than who I think I should be, maybe I can have some semblance of a half decent life. I have a set idea in my head of what I should be and it's so far from what I really am that I find myself wishing for a cure.
Part of my problem is that i often wonder if I'm even autistic but all professionals agree with the diagnosis so I must be. I still have a lot of work to even understand a lot of it never mind somehow function in life.. The late diagnosis hasn't helped either because I've had my whole life so far of people telling me that I just need to get on with things like everyone else.
It's certainly frustrating that a lot of professional advice doesn't take ASD into account, it's difficult sometimes to tweak it. I'm finding that a lot of the mindfulness doesn't take sensory issues in to account (as just on example) and I have to change a lot of it to suit me.
So what would the positive part/s of autism be? Or is it more about simply accepting that it's a part of you? I'm really struggling to see anything positive about it and I suppose that I feel like I'm changing everything about myself which is likely why I feel like I'm on the wrong planet..

Apologies for rambling but I'm finding things very confusing.

Title: Re: If there was a cure for autism...
Post by: Tucan on May 14, 2020, 01:23:48 PM
I think the acceptance of it and knowing it isn't something you can change helps. Knowing things are not your fault. Don't get me wrong it does suck but I have seen an improvement of the way I treat myself since the diagnosis.
Title: Re: If there was a cure for autism...
Post by: icicle 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.
Title: Re: If there was a cure for autism...
Post by: Lorien 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.
Title: Re: If there was a cure for autism...
Post by: 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
Title: Re: If there was a cure for autism...
Post by: Lorien on May 14, 2020, 11:43:17 PM

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

:rock:
Title: Re: If there was a cure for autism...
Post by: Vermilion 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!
Title: Re: If there was a cure for autism...
Post by: Tucan on May 15, 2020, 02:37:04 PM
I also need to learn to be more tactful at times. I am too honest sometimes.
Title: Re: If there was a cure for autism...
Post by: icicle 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.
Title: Re: If there was a cure for autism...
Post by: Lorien 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.
Title: Re: If there was a cure for autism...
Post by: Gerard 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.
Title: Re: If there was a cure for autism...
Post by: Vermilion 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.
Title: Re: If there was a cure for autism...
Post by: icicle on May 16, 2020, 09:25:32 PM
I think that if you have Autism, you ought to be allowed to request a professional who also has Autism, because of how badly NT professionals treat those with Autism.
Title: Re: If there was a cure for autism...
Post by: Lorien on May 17, 2020, 01:42:58 AM
(Young + female + s/h) seems to automatically = EUPD, despite the fact that there are clear criteria. But it is a really common misdiagnosis for autistic people. I do hope at some point it's cleared up. I even had a conversation where a Psychiatrist went through the criteria and accepted that I don't meet enough of the criteria for the diagnosis around 5 years before it was removed. It stuck because he said he had to write something. There isn't any anger in that for me. I just think that professionals don't have information that would be helpful.
Title: Re: If there was a cure for autism...
Post by: Gerard on May 17, 2020, 09:58:38 AM
I dunno, tbh. EUPD is a long road for some people. Anorexia, SH and so on can come first before it is picked up.

I should also say there really are little to no adult autism services in the public system, I'm fortunate enough to go privately and be near a city where there is someone who the training and knowledge to support me.
Title: Re: If there was a cure for autism...
Post by: icicle on May 17, 2020, 10:22:27 AM
The consequences of a misdiagnosis can be huge: discrimination, losing job, not being able to get passed occupational health, questioning yourself, other people misinterpreting you/ not understanding you, frustration, and the stigma that goes with the misdiagnosis, feeling hopeless that treatment isn't effective... I think that they should take more care and treat people more respectfully.
Title: Re: If there was a cure for autism...
Post by: Vermilion on May 17, 2020, 12:54:04 PM
I'd say that before any dx is made there should be discussion with the patient and a proper assessment for it, it shouldn't be assumed that female+ self harm = EUPD. An EUPD is a serious issue that needs treatment, if they really thought that I had it why wasn't I referred to MH services at the time? There have been far too many times where I just haven't been listened to by so-called professionals sand that's what I'm angry about rather than the misdiagnosis itself. As stated above there are lot of negative consequences of misdiagnosis and it feels like another way to gaslight, albeit unintentionally. Of course this contributed to my difficulties in accepting my dx but after 2 years + of speaking with different professionals it seems to be correct, at least this time I had a chance to discuss it and ask questions.

There aren't any adult autism services here either, I had to travel to get a dx and afterwards there was a post dx group for 6weeks. After that there was nothing. Most of my support has been through MH services but luckily my local area is at least aware and informed somewhat about autism and they at least listen to what I say. The issue is that a lot of standard MH treatment such as CBT aren't effective for the autistic brain.
Title: Re: If there was a cure for autism...
Post by: Lorien on May 17, 2020, 05:04:24 PM
There is a diagnostic service here. But literally no follow up at all. I don't think that is unusual in the UK. I worked a lot out for myself and recently I found someone doing Skype counselling and family therapy for autistic people. Re EUPD, I wasn't saying it isn't real or serious, just that it seems to be misdiagnosed in autistic people a lot and that if the criteria are not met then that should be enough to show that it is not an appropriate diagnosis for that person. I was on a waiting list for a therapeutic community and seen weekly by a Psychiatrist in a PD specific service for a while. They literally recorded that I don't fit their diagnostic criteria... But didn't see a problem with that. It's also perfectly possible to have a PD and autism or any combination of stuff - I just wish professionals had the guidance to reduce misdiagnosis and more information about autism.
Title: Re: If there was a cure for autism...
Post by: Tucan on May 17, 2020, 05:35:06 PM
I was originally diagnosed with eupd before they worked out I was autistic. Now I also have bipolar. Things are hard but finding out why they are hard does help.
Title: Re: If there was a cure for autism...
Post by: Lorien on May 17, 2020, 10:03:28 PM
I was originally diagnosed with eupd before they worked out I was autistic. Now I also have bipolar.
Ditto, although it was questioned before they couldn't see past the things that are related to autism.
Title: Re: If there was a cure for autism...
Post by: Gerard on May 25, 2020, 09:18:17 PM
I've concluded I've bad autism days, yesterday being an example. It's all a bit relentless, really. It's like a bad MH day on steroids. ::) It's as though a computer programme running in my head and I've little to no control over it. It is demoralising. Added to that, I feel like I am on a small island with some food and water. The neurotypical island is far away and I have no way of building a raft to get there. In short, meh.
Title: Re: If there was a cure for autism...
Post by: icicle on May 26, 2020, 08:03:58 AM
I have days when I feel really drained. I find that I only have the motivation to do something if it is something that I really, really want to do/ am interested in. I've always felt like an outsider looking in. Not sure that I'd want to join the neurotypicals though- I'd like to keep the ability to be logical, to not bully, criticise and reject others just because they are different from the socially created norm, nor would I want to be interested in social status. However, I would really like my life to be as easy as that of a neurotypical- I can't believe the things that they take for granted because they find them so easy. My life is frustratingly difficult. Neurotypicals don't spend their lives being judged on how well they manage to come across how people with Autism would want/ expect them to be.
Title: Re: If there was a cure for autism...
Post by: Lorien on May 26, 2020, 07:51:22 PM
Yeah, there are times that I get annoyed that I can't 'JUST' do something. It's also a bit of a project at the moment to give myself time to recover after doing things that are difficult. It is possible, but it isn't easy and I don't like that I need to. I think it is a bit of an extension of doing the opposite of what I was doing before s/h. The whole being kind to yourself thing is difficult for most people, but I think there are several more layers when you have to work against what you have done before and in a way that isn't natural for other people. The 'too autistic' vs 'not autistic enough' to count arguments are also incredibly frustrating and make most things more difficult.
Title: Re: If there was a cure for autism...
Post by: Gerard on June 03, 2020, 02:12:07 PM
Spoke to my colleague yesterday, she was lovely about it. Hopefully can tell her more in person when we're back in the office.
Title: Re: If there was a cure for autism...
Post by: Gerard on June 11, 2020, 10:11:51 PM
I know sensory overload is a thing in the ASD world. What about information overload? Is that a thing.

Drained at the mo.
Title: Re: If there was a cure for autism...
Post by: Gerard on June 12, 2020, 06:15:00 PM
This from Francesca Happé is worth a read.

https://psyche.co/ideas/autistic-people-shouldnt-have-to-use-camouflage-to-fit-in
Title: Re: If there was a cure for autism...
Post by: Lorien on June 12, 2020, 07:52:54 PM
I know sensory overload is a thing in the ASD world. What about information overload? Is that a thing.

Drained at the mo.

Definitely I think that NAS did a reasonable job of highlighting it but not explaining it. Someone recently said that you have to set aside the same if not more time to recover than the initial difficult period. Are you getting time to rest?
Title: Re: If there was a cure for autism...
Post by: Gerard on June 12, 2020, 09:42:33 PM
Wasn't aware of that, thanks. I'll look it up.

People with ASD have trouble with sleep, it's well-documented.

If you mean other general down time as rest I could probably do more. I was pretty drained when I got home from therapy yesterday. I only go every 4 weeks and didn't want to go back.
Title: Re: If there was a cure for autism...
Post by: Lorien on June 12, 2020, 09:56:01 PM
Eventually I ended up with a literal chill out room. Our spare room is given over things that are helpful when things are hard.before we had this extra space, it was a space behind my sofa. Just a space to be with no demands. I'd assume everyone would have different requirements but calm, quiet and dark is a general winner I think
Title: Re: If there was a cure for autism...
Post by: Gerard on June 19, 2020, 06:32:40 PM
Inflexible thinking
Overthinking
Confusion
Stress
Anxiety

Really feeling that you're 'less than'.

Typical part of life via the spectrum. ::)
Title: Re: If there was a cure for autism...
Post by: Vermilion on June 20, 2020, 01:30:10 AM
Feeling truly alone because despite caring deeply for others no one really understands, hell, I really don't understand. I feel utterly disconnected, other people are an enigma to me.
I don't know what I'm feeling, it's such a strange feeling.

Seriously, autism is sh**. I wish I could cut that part of my brain away. Or get a new bran. Anything other than this
Title: Re: If there was a cure for autism...
Post by: Gerard on June 28, 2020, 09:09:23 PM
Preach! https://twitter.com/NaoiseDolan/status/1271344604529508352
Title: Re: If there was a cure for autism...
Post by: Lorien on July 06, 2020, 02:21:11 AM
Sorry that this may be a bit late for people, I wanted to check that it was ok to post, then didn't keep track of PMs.

Autistica are doing a free virtual research conference this week. Link here https://www.autistica.org.uk/get-involved/research-conference/festival-programme-2020
Title: Re: If there was a cure for autism...
Post by: Lorien on July 06, 2020, 10:14:06 AM
These also seem to be recorded (hosts only). So they should be accessible even after the event.
Title: Re: If there was a cure for autism...
Post by: Gerard on July 09, 2020, 10:52:27 AM
Discovered Sarinah recently, think she explains things well. https://www.youtube.com/watch?v=ITZrfle0niU
Title: Re: If there was a cure for autism...
Post by: Gerard on July 10, 2020, 10:10:14 AM
https://themighty.com/2020/03/autism-spectrum-wheel/

This is good.
Title: Re: If there was a cure for autism...
Post by: Gerard on July 15, 2020, 12:05:10 PM
2018 piece on the experiences of women.

https://www.theatlantic.com/health/archive/2018/02/women-camouflaging-autism/553901/
Title: Re: If there was a cure for autism...
Post by: Gerard on July 17, 2020, 09:45:52 AM
New document from the RCP on adults. https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr228.pdf?sfvrsn=c64e10e3_2
Title: Re: If there was a cure for autism...
Post by: Gerard on July 28, 2020, 07:07:35 PM
Anyone watched Love on the Spectrum, on Netflix?

https://twitter.com/slooterman/status/1288139920394145793
https://screenrant.com/where-when-love-on-the-spectrum-filmed/
Title: Re: If there was a cure for autism...
Post by: Lorien on July 28, 2020, 11:08:58 PM
I saw that it exists - but I was worried it might make me annoyed. The Twitter feed kind of confirms some of what I was worried about. I didn't like 'undatables'.
Title: Re: If there was a cure for autism...
Post by: Vermilion on July 29, 2020, 05:20:12 PM
I think there's another series called 'Atypical' too. I don't watch them because I'm sick of these sensationalist programs that give people the wrong ideas and/or people pretending to actually give a sh**. I'm so fed up with it all.
Title: Re: If there was a cure for autism...
Post by: Lorien on July 29, 2020, 05:34:13 PM
Atypical was an American fictional series. I liked it in general some things were a bit over done but the main character had a job and went to uni and it countered a lot of the pitty bullsh*t. 'The A word' is pretty good at factual portrayal of SEND schools. Problem is, the spectrum is so broad no program will get everything right or represent everyone.
Title: Re: If there was a cure for autism...
Post by: Vermilion on July 29, 2020, 08:50:02 PM
Oh, I understand that it's a broad spectrum and no programme can be expected to get that right. I've just got so frustrated with so many of them always using the most extreme cases. Not necessarily autism but any sort of issue. I've seen programmes about say, tourettes and it's always the ones who shout and swear constantly rather than those who have relatively minor symptoms. This sort of bull**** has lead to so much stigma and misunderstanding; when I tell others that I have autism they either don't believe me or those that do expect me to have some sort of savant ability which is actually very rare and generally only those on the so-called low functioning end of the spectrum would have it, even medical professionals make assumptions like this. It's really pissing me off and I'm sick of explaining things to others who watch these types of programmes and think that they know it all.

Mind, I'm not exactly feeling happy go lucky at the moment so maybe I'm just pissed off in general.
Title: Re: If there was a cure for autism...
Post by: Lorien on July 30, 2020, 06:18:37 PM
My new psychiatrist conveniently forgets I am able to communicate for myself because it takes longer and choses to communicate with my partner most of the time instead. If I'm really low or manic I get that and I don't really mind at those times but the rest of the time it's really messed up. I feel like a lot of us fall into the neurotypical brackets of both "too autistic" and "not autistic enough"