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Late middle age insight

Gaz Hunter

Hi.

I'm Gaz, and I'm 53, and I recently made the interesting discovery, by accident, that I fitted the profile of Asperger's syndrome. Which was a shock, but also explained a lot about the last 53 years...

I took the AQ test and scored 42. Now, I'm uncertain of the relevance of this but one of my friends took it as well, and scored 17.

So, armed with this, a week's worth of research and reading these community notes I made an appointment to see my local doctor.

Who told me *You've got a job. You can't have Asperger's. That's Autism. So you don't have it*, gave me 5 printed A4 sheets of information on Asperger's in infants and sent me home.

I'm feeling somewhat agrieved, and in no small measure let down.

Where do I go from here?

GAZ 

Parents

  • I think another huge part of the problem is that clinicians are not in touch with research and seem to not even understand the genetic link.  This is why CAMHS haven't once acknowledged my eldest daughter's high genetic risk.

    Although I am a pretty formidable researcher, all it entails is dogged persistence at the computer - something that any clinician can also do.  So why are they so behind with the research and up-to-date knowledge?

    Why is there such a gap between discoveries and knowledge and the people on the ground?

    How is it I can find bone fide research and become more of an expert in ASCs than clinicians in CAMHS and adult services?

    How is it they are unable to take action in the face of overwhelming evidence, including genetic and research...because they don't understand it!

    Then they make wrong decisions because they lack the enquiring mind to even bother to educate themselves to enable the right decisions.  Why are people like this employed in such vital positions?!

    I have never had training in those areas and yet I seem to know more than them!  This is not an acceptable state of affairs, clinicians should be made to keep up-to-date on these things.  Their ignorance is blinding and it shouldn't be allowed.

    The arrogance in never asking us how it feels to be autistic, what affects us and why and what we need, never offering us opportunities or advertising things like Scrutiny Panels (which in my area I have found about only by research and networking with other parents of ASC children) is unbelievable.  It's like a closed shop where only a select few are allowed in.

    In my experience psychiatrists are worse than psychologists at understanding ASC issues.  The NHS needs expert clinicians who know all about ASCs not ordinary clinicians who have had a quick course in how to use clinical tools.

Reply

  • I think another huge part of the problem is that clinicians are not in touch with research and seem to not even understand the genetic link.  This is why CAMHS haven't once acknowledged my eldest daughter's high genetic risk.

    Although I am a pretty formidable researcher, all it entails is dogged persistence at the computer - something that any clinician can also do.  So why are they so behind with the research and up-to-date knowledge?

    Why is there such a gap between discoveries and knowledge and the people on the ground?

    How is it I can find bone fide research and become more of an expert in ASCs than clinicians in CAMHS and adult services?

    How is it they are unable to take action in the face of overwhelming evidence, including genetic and research...because they don't understand it!

    Then they make wrong decisions because they lack the enquiring mind to even bother to educate themselves to enable the right decisions.  Why are people like this employed in such vital positions?!

    I have never had training in those areas and yet I seem to know more than them!  This is not an acceptable state of affairs, clinicians should be made to keep up-to-date on these things.  Their ignorance is blinding and it shouldn't be allowed.

    The arrogance in never asking us how it feels to be autistic, what affects us and why and what we need, never offering us opportunities or advertising things like Scrutiny Panels (which in my area I have found about only by research and networking with other parents of ASC children) is unbelievable.  It's like a closed shop where only a select few are allowed in.

    In my experience psychiatrists are worse than psychologists at understanding ASC issues.  The NHS needs expert clinicians who know all about ASCs not ordinary clinicians who have had a quick course in how to use clinical tools.

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