It's far more stress inducing and hard to cope with than being part of the severe mental illness and the high IQ communities.
It's far more stress inducing and hard to cope with than being part of the severe mental illness and the high IQ communities.
I've been part of "autistic communities" before. I didn't feel truly welcome and there's so many arguments over the smallest things ("how dare you call yourself a person with autism") that I just can't be bothered, and it seems to be a few powerful people who can control what goes on there.
As someone who was piled on viciously by people who are also autistic, who also decided that I wasn't actually autistic, and was not defended by anyone, I side-eye anyone who says the autistic community in general is wonderful.
I agree with you - they can be misleading, especially given the spiky nature of ASD.
I can work, feed myself etc and so would likely be considered level 1, but if each of the ASD criteria were levelled separately, I suspect I’d be well inside level 2 for social communication difficulties.
Just to clarify, the DSM classification says that it can be helpful for assessors to note different levels of support (1, 2, or 3) that might be needed for each of social communication and restricted, repetitive behaviours - and goes on to say that they should be separately rated.
The levels aren’t included in UK assessments
They can be. Both classification systems are used here. My own assessment was carried out under DSM, so I was given a level.
Hi Firemonkey. This sounds like it could be imposter syndrome?
You might be right. I've only really thought about imposter syndrome from a cognitive ability angle. The one that has me thinking most people could do well at x, but I'm stupid if I can't do well at y. My daughter regards my ASD as primary and the schizophrenia/schizoaffective as secondary..It occurring due to the pressure and stress of having been an undiagnosed autistic child and teenager.
My ADOS score for social communication was at classical autism level. Being online plays to my strengths.Place me in a situation where verbal skills are not of primary importance, and it's a very different kettle of fish. Something that's not talked about much is 'adaptive functioning'. I've been treated for much of my time as a psychiatric patient as someone with a character defect, because I've not lived up to the faulty,often very faulty, expectations of mental health professionals. Things only improved when, at the age of 60, I moved to be near my daughter. She talked to mental health services here in Wiltshire prior to my moving from Essex. A large part of that was correcting long held inaccuracies about me that had been wrongly entrenched as truths. That I wasn't just an awkward, bolshy, git, but had things , everyday practical things, that I genuinely struggle with.
many of the “negative” traits or behaviours associated with autism aren’t autistic at all, they’re trauma responses.
So very true.
Trauma does seem to be a near universal experience for autists in my experience whether from an individual event or (more commonly) from many recurring events where we seem to have friction in society.
All just my observations before anyone accuses me of spreading disinformation.
One of the fascinating things I’ve slowly realised is how generally traumatised autistic people are by their experience of living in a neurotypical world, and that many of the “negative” traits or behaviours associated with autism aren’t autistic at all, they’re trauma responses.
Hi Firemonkey. This sounds like it could be imposter syndrome? I had that when I first joined this forum, I didn't think I would be "autistic enough" to fit in. But I soon realised that I am what I am - people will either accept me or not, there is no point worrying about it.
I enjoy communicating with a diverse mix of people in here. Everyone is interesting to me, including you. We don't have to all be the same to have empathy with each other.
I don't use any other forums or social media so I cannot make comparisons. But I believe that all of us here have had mental health issues, and we may not all be geniuses but we all have the capacity to think things through, often in a creative or "out of the box" way. We are all valid and valuable.
but I don’t think it’s representative of the wider autistic population as members are overwhelmingly level 1 but not 2 or 3.
A VERY important point - well made, sir.
That makes more sense A, I suspect I'd be the same as you.
The levels aren’t included in UK assessments and I agree with you - they can be misleading, especially given the spiky nature of ASD.
I can work, feed myself etc and so would likely be considered level 1, but if each of the ASD criteria were levelled separately, I suspect I’d be well inside level 2 for social communication difficulties.
I don't know what all the levels mean, are they really helpful for anything other than assessing the level of support you need? I was given no level when I was assessed and I seem unable to get any further assessment to find out, I think as I'm too old for education and am on long term incapacity I'm not a priority.
If I get on with someone then the last thing on my mind is what level of support they need, I just know that it's someone I connect with.
I’m not sure where the autistic “community” is. This forum has a community of sorts but I don’t think it’s representative of the wider autistic population as members are overwhelmingly level 1 but not 2 or 3. My personal biggest challenge is that almost everyone here seems to be married, in a relationship and have family. These are all things I’ve never had and would love to have so it’s very invalidating for me, especially when everything I read suggests that the overwhelming majority of autistic people remain single.
But the forum has provided a useful place exchange information and learn more about autism and it’s nice to have somewhere to chat to people who share some of my life challenges. In my experience almost everyone here has good intentions.
But ASD is a spectrum condition. We are all different.
As Iain says.....I get you too regarding this statement;
I constantly worry about saying something that will result in the disapproval of those self appointed gatekeepers of how an autistic person should be.
.....but with me, compared to you and your statement, I can substitute the word "worry" for "feel frustration."
Iain states that his approach is to "push back"....whereas with me, I tend just to hold back and say nowt because I get even MORE frustrated becoming embroiled in a fruitless tit-for-tat of opinion......often where EVIDENCE is demanded of me for whatever my opinion or understanding is.
I don't understand the concept of "irrefutable" in the same way that so many others appear to do. Talk of the "current zeitgeist" as the new irrefutable "truth" seems a bit ridiculous to me......because it changes so very much over such very short periods of time these days.
I constantly worry about saying something that will result in the disapproval of those self appointed gatekeepers of how an autistic person should be.
I get this.
My approach is to push back and ask them what their credentials are to be such gatekeepers - most are just overbearing bullies and turn out to be paper tigers.
I wouldn't worry about others opinions so much - so long as you point out that it is your opinion and not a statement of fact on the subject then they can just put a sock in it.
Hi Firemonkey,
I’m new here so I don’t know much but I hope it’s ok to say that I’d see your experience of autism as valid and true and real and important as anybody else’s because it’s yours just as mine is mine. I’d like to think I could respect your experience as yours and also respect you for sharing how things are for you.
not sure if that makes any sense.
I think comunity is an oversued word to honest, surely to be a comunity you have to have more in common than a diagnosis?
That's a good point.
It's more psychologically demanding. Some people are at their best in such an environment/situation I'm the complete opposite. I constantly worry about saying something that will result in the disapproval of those self appointed gatekeepers of how an autistic person should be.
I can't say I feel any real community here. And the minute I do find souls here I do feel a connection with, bad things happen, and they disappear! I suspect someone I did jaw with a lot here and elsewhere got to be a casualty of the pandemic, for example. And in one particular instance, one person I encountered here was either just a chancer89, or a really bad apple.
If it is about the A word, then I'd still like to know more of what it still implies for what is left of my rather strange life, that's all.
I think comunity is an oversued word to honest, surely to be a comunity you have to have more in common than a diagnosis? I don't feel part of a "comunity" here either, here is a place I come for a bit of chat and conversation on a fairly superficial level, rarely I have to engage my brain more seriously, although I enjoy it when I do. Theres lots of stuff I don't talk about here, I've tried but have got next to no engagement, be it mediaeval history or Strictly Come Dancing.
