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How many of us are there really?

Dawn

The NAS says one in 700,000 or 1% of the population. Of course they can only count the diagnosed.

Thinking about my work team: 2 of us diagnosed and 'loud and proud' about it, one we know, but he doesn't choose to say, one more with kids with a diagnosis and has self diagnosed...out of only 11 of us? 

Not one but two of my ex boyfriends, with whom I am still good friends, have self diagnosed - yup! I see that. Well, they say like attracts like; probably why I'm so fond of them.

We are definately a small minority. If we weren't the world would be catering to us better, but not so small as just 1%, I'm sure. Obviously, I picked my ex-boyfriends, but I didn't pick my colleagues however it turns out I like them. I only had a hand in recruiting one of them.

So, what do we think? How many of us are there really, do you think?

Parents

  • It will be more than 1%, but the true figure is unknowable - you'd have to have a reliable test for autism to work out the right percentage - some people may not be aware, or admit, they have autism, so asking everyone wouldn't be accurate.  The diagnosed rate is all there is to go by right now.

  • in reply to Autimator

    This is the one thing that makes me wonder about research into genetic testing.  I'm generally very suspicious of it and would vastly prefer autistic-led research into areas which are actually helpful to us.  But, at the same time, I look back and wonder how on earth we, as a family, were supposed to know we're autistic.  An awful lot of suffering has been generated due to not being identified much earlier on and the diagnostic criteria are quite narrow and deficit-based.  Without much wider awareness, i'm sure this is still happening to some families and I wish there were a simple, accessible way of knowing.  

  • in reply to Jenny Butterfly

    I have mixed feelings about the genetics. Could it help with early diagnosis? Might my life have been easier had it been known when I was born, not waiting till I'm nearly 57 to find out?

    But there is a danger that some people might not choose to progress with their pregnancy if known pre-birth, denying the world some awesome people. I can see that one has a dangerous flip side, indeed.

    I am very interested in the neurology research which might establish which parts of our brains might be firing up differently for different people on the Spectrum. 

    We need a lot of research into appropriate therapies for us too.

  • in reply to Dawn

    Exactly,  I think that burnout is the result of trauma, but by the time that occurs getting out there and engaging with the usual kinds of therapies offered can be more than a little challenging.  The therapies offered on the NHS often badly let non autistics down, but when they have no idea about trauma or autism and offer 6 sessions of very basic CBT in a one-size-fits-all approach, it can prove disastrous for us.  And the person might well think, "Oh.  Here's another person who wants to impose their NT agenda.  I knew this wouldn't help!"  As for advice for families where all members are already adults - non existent!

    And yet still the general advice is to "seek help", as if we never thought of that.  :(

  • in reply to Jenny Butterfly

    Amen especially to your last paragraph.

    We are traumatised because we weren't  identified and now the system doesn't know what to with us.

Reply Children
  • in reply to Dawn

    Exactly,  I think that burnout is the result of trauma, but by the time that occurs getting out there and engaging with the usual kinds of therapies offered can be more than a little challenging.  The therapies offered on the NHS often badly let non autistics down, but when they have no idea about trauma or autism and offer 6 sessions of very basic CBT in a one-size-fits-all approach, it can prove disastrous for us.  And the person might well think, "Oh.  Here's another person who wants to impose their NT agenda.  I knew this wouldn't help!"  As for advice for families where all members are already adults - non existent!

    And yet still the general advice is to "seek help", as if we never thought of that.  :(