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5 responses to “What People Think They Know About Autism Bears Little Relation To Their Actual Knowledge”

1. 

   March 11, 2020

   Senor

   Thanks for that link.

   https://www.sciencedirect.com/science/article/abs/pii/S1750946719301874

   There’s an abstract here that says the participants were drawn from the general population. This might partially explain some of the disbelief with which many of us are frequently met. In a way, that disbelief isn’t too surprising for those of us who have spent decades without the faintest idea that we might one day receive some sort of diagnosis or self-identification. Until quite recently, my own perception of what the problem might be was influenced by what I had heard back in the early 1970s from a well-informed/well-intended special school principal who could best be described as working with kids at the more immediately obvious end of the spectrum. It seems that we still have a long way to go before our message is well-and-truly out there; especially perhaps given that a lot of the current scepticism is probably fuelled by deliberate misinformation from political idealogues. We do indeed live in cynical and politically-manipulated times!

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2. 

   March 17, 2020

   Whereislove

   Since I was diagnosed these are some of the things people have said to me – ‘autism doesn’t exist’, ‘you wouldn’t know you have it’ (but thankfully, somebody who had worked with autistic people noticed that I have autism), ‘don’t talk about it to anyone’, ‘it’s such a shame there’s such a stigma surrounding autism’, ‘you decided not to communicate’(correction-I found it too difficult to communicate),’but you used to be so normal’(finally I don’t have to try so hard any more-it was all getting to be too much maybe people will finally understand, maybe I’ll get some support), ‘you can’t even go to the shops like normal people you should be locked up somewhere’, ‘you’re just making excuses’, ‘you retard’(People have said that to me more than 100 times),’ And that’s not the worst of the comments or things people have done to me -there’s far worse than that.

   These people have not seen me on my own hitting myself, rocking, crying etc, because people have been abusive to me and I don’t understand this planet and I couldn’t communicate and it’s difficult. They haven’t seen me listening to the same music over again, they haven’t woken up like me-They don’t feel my pain. If other people knew or felt what I actually have to suffer every day they would realise that they shouldn’t think they know more than they do. People do regularly overestimate their knowledge. Most people probably see the difficult ‘act’ I do for being with other people and that is exhausting. Can’t keep it going for much that’s why I hardly ever go out. They don’t mention that bit when they belittle me, abuse me and blame me for something that’s not my fault. Since I was diagnosed, I know now what is wrong with me and I trusted Linda- I don’t know why, Linda is so nice she made me feel for once that even one person cared about me.

   I think that most people still really do not understand what autism is or what it’s like to be autistic. In addition, I and probably so many other autistic people have sadly experienced an inordinate amount of bullying, neglect and abuse. However, I think that progress is being made in some areas. Thank you to people like Linda Buchan who actually care-not many of them in my experience. Senor, about the ‘more obvious end of the spectrum’- I heard an autistic boy say, after his classmate started screaming because his teacher was forcing him to do things he found really difficult, ‘my head hurts even more now’. I totally understood the pain he was feeling because I think I was feeling the same. People should have empathy and compassion and realise that some people have difficulties that they can’t communicate or that can’t be seen.

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3. 

   March 17, 2020

   Senor

   Well, I truly hope you are able to find some common ground with the support groups that accompany AXIA-ASD. I haven’t had the opportunity to experience them myself, as I left the UK behind decades ago; but I observe them from afar, and they do seem to create a sense of community, and the ability to achieve.

   Your experience very much mirrors my own. I really only talk about the ‘more obvious end’ because many would say (in public) it was never particularly obvious in my case. Something was very obviously wrong for me; and I personally reckon that it was probably also quite obvious to almost everyone else; hence the constant put-downs and deep unpleasantness. And I haven’t found the society I have now lived in for decades to be any more accepting or tolerant. The whole subject is just swept under the carpet. There are no support mechanisms. People are not quite as pompously dismissive as they are in the UK, but still they make it plain to you that you’ve already said too much for their comfort. And the local expat population are also much the same. there is no social cohesion. It’s a recipe for silence and apathy. And on top of that, we now have the further self-imposed self-isolation of trying to avoid COVID-19. Cabin fever is beginning to set in, but I have devised quite a few solo occupations to keep my sanity and humour. I have long had quite an amazing resilience in coping with all of these things; mostly alone. And yes, I genuinely do believe that there are many others out there who have a much stronger need for assistance and companionship.

   I hope you are able to participate in some of the support activities, and make a few connections through them. I reckon that there aren’t too many organisations in the UK offering such support.

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   1. 

      April 1, 2020

      Whereislove

      I look at the support from axia online because I can’t get to the meetings physically. I might go if it were closer but even if it were closer I might find it difficult to go. Most of the time I need someone else to go places with me. There is some useful information on the axia website also.
      People also sometimes have said to me in public that it’s not obvious or they wouldn’t have known but I think it’s a natural human mechanism for some humans to not want fellow humans to have anything wrong or different (difference can also be better) about them and prefer to pretend that everything is ok or as they want it to be or else just blame, ostracise and bully those that are different or having difficulties. It can be sadly a part of the social psyche and also social conditioning systems. I’m not sure if the above theory has a name but I do believe that is the case relating to how most humans react to difference and disability. All I can say is I felt different, the same, right and wrong all at the same time. I knew I found certain things more difficult than other people but at the same time I knew implicitly that I possess some qualities that other people generally did not possess such as honesty and kindness and the ability to notice small details and analysing everything, for example (based on my experiences). I also think that it has been obvious to other people-hence, as you mentioned, the unpleasantness and put downs. Yes I agree, not enough people who are accepting or tolerant and no excellent support mechanisms. Yes pompously dismissive-you describe it perfectly. Having mentioned that, I do believe that with continuing work of the kind that axia commits to is slowly improving the understanding and wisdom of the general population or at least the understanding of those more highly educated or those who can be bothered to read things. What solo occupations have you committed to? When I encounter problems my drive to create things to solve problems increases dramatically so I have been thinking about what I can create. I would be interested to know. I have a certain amount of resilience too (surprises me sometimes what I have achieved) and I can be quite self-resourceful in some respects but not in other respects. Frankly, I’ve had to learn to cope alone because most people ostracise, desert me and bully me. Thankfully I have one person in my life who is supportive and who understands a lot more than most. I have a good humour too and I can’t understand why people are so mean to me since I am not mean to anyone and I’m good company. I’m going to get a dog. I don’t know where to get one from. One day, humanity may be ready for love.

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4. 

   April 4, 2020

   Linda Buchan

   Thank you for your kind words about axia
   I admire your resilience too

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