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Age 47 Diagnosis

NAS80869

I had an assessment today and recieved a diagnosis of autism.  Mind blown! How have I got to age 47 without a diagnosis? It feels like I've lost 47 years . Still processing obviously but feeling shocked, overwhelmed,  scared, relieved, cross, angry, sad and cheated. And completely uncertain! 

Lots of research for me this weekend I know that!! 

Parents

  • Hi,

    I was diagnosed a few weeks ago, my psychologist recommended Neurotribes by Steve Silberman to read. It was a long book, and spent more time talking about what autism isn't than what it is, but it appealed to my love of science and history.

    Anyway, I mention it because I felt like you too. However, after reading it, I was glad I wasn't diagnosed as a child. Yes, if I had been a child today, I would hope to be diagnosed, but being diagnosed in the late 70s would have been very bad for us. Autism has been very severely misunderstood throughout history - and there are still real issues with diagnosis today (but it's got a lot better). The treatment of autistic people has been horrific (including sending to the gas chambers, institutionalisation, forced sterilization, etc.). None of that is right, but it was reality (and too often the discrimination is still too real).

    Maybe it will also help you to let go of the anger at least - it did help me. I can't promise it will help you stop being angry as you come to grasp the situation for autistic people today though.  I am lucky in that I already held several influential NED roles in education and supported programmes for early ASD diagnosis (e.g. through the Opportunity Areas) and mental health support. In the last month, I have redoubled my efforts to challenge misconceptions of what Autism is, and what support we need (even though I'm only learning about it myself)! That has helped me feel like I'm at least doing something.

    Ironically though, I'm still struggling to find support to help me cope with such a life-changing event!

Reply

  • Hi,

    I was diagnosed a few weeks ago, my psychologist recommended Neurotribes by Steve Silberman to read. It was a long book, and spent more time talking about what autism isn't than what it is, but it appealed to my love of science and history.

    Anyway, I mention it because I felt like you too. However, after reading it, I was glad I wasn't diagnosed as a child. Yes, if I had been a child today, I would hope to be diagnosed, but being diagnosed in the late 70s would have been very bad for us. Autism has been very severely misunderstood throughout history - and there are still real issues with diagnosis today (but it's got a lot better). The treatment of autistic people has been horrific (including sending to the gas chambers, institutionalisation, forced sterilization, etc.). None of that is right, but it was reality (and too often the discrimination is still too real).

    Maybe it will also help you to let go of the anger at least - it did help me. I can't promise it will help you stop being angry as you come to grasp the situation for autistic people today though.  I am lucky in that I already held several influential NED roles in education and supported programmes for early ASD diagnosis (e.g. through the Opportunity Areas) and mental health support. In the last month, I have redoubled my efforts to challenge misconceptions of what Autism is, and what support we need (even though I'm only learning about it myself)! That has helped me feel like I'm at least doing something.

    Ironically though, I'm still struggling to find support to help me cope with such a life-changing event!

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