A brief intro and a question :)

Hi everyone, this is a bit daunting sharing myself with the wider community, but I hope I will be made welcome.

I am a (fairly) young person diagnosed with Asperger's Syndrome, so I'm not too badly affected compared to the low functional end of the spectrum, yet I do really struggle when it comes to lack of structure and sensory overload. 

Recently, through my education, I have had many people, whether it is said to me directly or overheard, say things about Autism that are plain cruel or wrong, so much so that I have decided to create a list of them that I eventually transform into a small awareness campaign for my school. (Seems ambitious but I'm up for it )

So what I want to know from you is: Has someone ever said something to you about Autism specifically that has upset you, and if so, would you mind sharing? It would be really useful for me.

Thank you ever so much,

Oliver Russell

  • Hi, 

    I'm not autistic but my daughter is currently going for diagnosis ( no doubt in our minds she is) but when I have talked with about it with other parents I either get "really? Are you sure she's not just weird?" or " but she looks so normal " I have found most people don't have much understanding and even more unfortunately it seems many professionals don't either.

    I think raising awareness in your school / area is a fantastic idea. I wish you luck 

  • I've never had a comment made to me about being autistic specifically. But I have had many comments about behaviours or tendencies I have being weird. Now I don't really mind the term weird, I probably am weird. But I think weird is often used in a very negative way. What bothers me about it is that these behaviours and tendencies can't just be accepted. I can't just be allowed to be me. This makes me very self conscious and increases my masking. I don't want to mask though. 

    Comments I have heard made to or about others that annoy me are things like "But they don't look autistic" or "But they can make eye contact" or the assumptions that are made about intelligence - either the person will be slow or a genius. 

    It's a great idea to do this. Good luck with it.

  • "Everyone is a bit autistic" grates me. It downplays the condition. I've had it said to me as a way that was supposed to make me feel better!
    My biggest issue is that when I told my family, they all immediately denied it and cut me off. I now have zero contact with my parents/siblings - their choice. They always struggled with me anyway and I was isolated as a child from them. I guess this just gave them the final push to cut me off completely.

    On the bright side, my partner has gone to extreme lengths to understand me and what I go through daily - specifically with sensory issues. I don't explain them well, so she has spent hours watching videos, TED talks, etc and asking if any of those experiences relate to me - she communicates this to others for me.

    Telling people is always a 50/50 gamble. I have one friend I have known 30yrs being really supportive whereas others have just stopped talking to me.

    I've also had "you aren't autistic because you do XYZ", or "I know someone autistic and you're nothing like them"

    Some tips to help educate people:-

    "Everyone is a bit autistic" - similarly, everyone is a little bit pregnant.

    "I know someone with autism" - great! Now you know someone with autism, you know exactly one person with autism. Now go meet some more and say they are all the same!

    I don't know what to suggest for the "you're just weird" comments. I have had them all my life and it doesn't bother me. I met someone autistic at the weekend, in a pub with his dad. His dad said he was weird. His reply was "yeah I am, and I'm talking to someone else that's weird - you are drinking on your own!" Great comeback!

    BTW - some people will be offended by the "low functioning" comment. I have no idea what the PC phrase is.

    Also, rightly or wrongly, Aspergers is no longer a diagnosis. You are autistic. But you are high functioning. Which might offend some people. We can't win :D

  • Hi Oliver & welcome. I'm in my early 50s and hopefully getting formally diagnosed in the next month or two.

    Whilst no-one has said anything unfair directly about my autism (would be difficult as no-one knew until a year ago!) I've had countless instances of people not taking my perspective seriously and actually listening. So lots of "Don't be silly", "Don't take things so seriously", "You need to get out more", "Use some common sense", "How could you forget *that*?", "Don't you *care* about your nan?".

    So one thread of thought I might suggest for your awareness campaign (great idea by the way) which applies to all sorts of differences is about people actually listening to others and not interpreting their words through their own experience.

    There are some classics though, like "You don't look autistic?", "You can't be autistic because XX", "Aren't you just being over sensitive?", "Everyone gets that", "Everyone's a bit autistic".

  • Isn’t that a bit weird and controlling, trying to get people to not say certain things? I’m not saying it is, that’s just the way I see it. To me, it would seem more logical, to me, to learn to deal with my reactions, which is something within my control, rather than trying to control something I don’t actually have any control over. So when somebody shares with me their understanding of autusm, if it’s not really correct, I simply let them know that and it often opens up a conversation where I can share my understanding and experience of autism with them. That’s just me though, and I know I’m weird! I don’t need people to tell me that, even though they do! But I don’t mind. :)