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Why does nobody ask about our life with autism?

devonmum

Autism is a huge part of our lives for good and for bad. It dictates everything we do. I love my boy so much and derive so much joy from him. I celebrate him every day but life can be difficult and it most certainly is not 'normal'.

One thing I find difficult is that nobody (other than those who know and love my boy) asks 'how are things' or 'what does your boys autism mean for  you'. I feel the need to tell people that my boy is autistic. It is not a secret, it is not an embarassment and  it explains a lot but the silence that declaration is met with both immediately and later on at best annoys and a worst is very hurtful.

Sorry I just needed to ventilate, I guess there are no solutions other than education...

  • Former Member
    Former Member

    People do find talking about disabilities difficult and sometimes they will be embarrassed and they just won't know what to say. One thing that helps, in my mind, is reducing my expectations of what others might do in a situation. If I have lower expectations then I am less liable to be dissappointed and I am more likely to get to the end of the day with less anger and frustration.

    Education and programs like the A Word are all very good but I don't expect them to get through to the large number of people who would rather just watch football or The Voice (I'm using gross generalisations here - I watch football myself but also watch things like C4's Born Naughty so pelase don't complain if The Voice is your favourite program!)

  • Thank you

    I really do hope this program does bring some understanding of autism to the general public. I think mostly people just do not know how to act or what to say and thus avoid or seem to dismiss the subject.

  • Hi there,

    Yes, as a late diagnosed adult, I also have frustrations with this.  Not too many people know my diagnosis, but most close friends and family do.

    I've found that if there's a subject of conversation where the autistic experience might be different than for most other people, and I mention this, I'm simply told to "stop bringing autism into it all the time."  In particular it happens often with those conversations that begin with generalisations like "Everybody knows..." or "We've all experienced..."

    If folks want me to join in with the conversation, I can only tell things from my own viewpoint - I can't help that my perception of things is different, and I don't think it's right to be expected to either shut up, or deny what I really experience.  I'm not pleading for sympathy or special treatment, just acknowledgment that my point of view is honest and valid.

    It feels like a Catch-22 sometimes.  People won't be able to understand how our lives differ unless they listen - but they won't listen until they're educated about the differences.

  • Hi devonmum

    Venting is OK Smile

    Thought you might find this new TV series interesting.

    I went to the launch at the BFI on Tuesday. The story is about one boy and everyone is different but hopefully it will help raise awareness so you dont get as many irritating responses.

    www.bbc.co.uk/.../the-a-word

    Best wishes

    Bob Mod