People who self-diagnose gaining access to services

A major autism organisation is giving access to groups/services for adults with Asperger's and high functioning autism to adults who self-diagnose.

Those who self-diagnose are highly motivated, unlike many adults with autism where motivation can be an issue.  They are more likely to attend groups than those with significant problems. These self-diagnosed adults as service users have a say in how services are run.  In this organisation, they want groups set up that exclude those with Asperger's and high functioning autism who have more problems than they do.

This mirrors what has happened in some online groups for people with Asperger's that have been dominated by those desperately seeking a diagnosis.

What other condition allows those that self-diagnose to be given access to services?  It could be argued that everyone as some autisitic traits i.e. is on the autism spectrum.  But surely the point of diagnosis is to identify those that are in need of support services.  To be given a diagnosis, there must be 'significant impairment'.  Many of those desperate for a diagnosis do not meet the criterea.  For many 'Asperger's Syndrome' seems a trendy diagnosis - it doesn't have the baggage of many conditions linked to the mind/brain.  They have little awarenees of the many difficulties faced by those living with Asperger's/high functioning autism.

I believe allowing people who self-diagnose access to services makes diagnosis meaningless.  In the long term, it is likely to have a negative affect on funding for services for adults.

What are your thoughts?

 

Parents
  • I don't think I have called you a 'borderline' case Longman. For a start, I do not know how your AS manifests itself in your day to day life, so it would be rather  brash of me to assume anything about your personal situation. From what you say, it sounds as though you have found good coping mechanisms to help you navigate the social world despite the fact that you endure anxiety and other problems as a result of your AS - it sounds as though it was very beneficial for you to get a formal diagnosis.

    But I think that the points that Shek makes are valuable ones, and we must not shy away from exploring the wider ramifications of possible 'over' diagnosis of AS in our society. This is an uncomfortable topic but it is one that should not be overlooked.

    The question we should ask is to what extent we should take such an inclusive approach to diagnosis that we completely relativise all distinctions between 'difference' and 'normality', or whether we need to diagnosis people who are struggling and find life difficult, and that we should have a clear empirical distinction between clinical AS and 'normality'.  I do not have a fixed notion of where I stand as yet, so I can truthfully say that I abide by no dogma in this discussion. I can see both sides of the argument. However, I am more inclined to side with the empirical distinction group than the 'get rid of all boundaries' group.

Reply
  • I don't think I have called you a 'borderline' case Longman. For a start, I do not know how your AS manifests itself in your day to day life, so it would be rather  brash of me to assume anything about your personal situation. From what you say, it sounds as though you have found good coping mechanisms to help you navigate the social world despite the fact that you endure anxiety and other problems as a result of your AS - it sounds as though it was very beneficial for you to get a formal diagnosis.

    But I think that the points that Shek makes are valuable ones, and we must not shy away from exploring the wider ramifications of possible 'over' diagnosis of AS in our society. This is an uncomfortable topic but it is one that should not be overlooked.

    The question we should ask is to what extent we should take such an inclusive approach to diagnosis that we completely relativise all distinctions between 'difference' and 'normality', or whether we need to diagnosis people who are struggling and find life difficult, and that we should have a clear empirical distinction between clinical AS and 'normality'.  I do not have a fixed notion of where I stand as yet, so I can truthfully say that I abide by no dogma in this discussion. I can see both sides of the argument. However, I am more inclined to side with the empirical distinction group than the 'get rid of all boundaries' group.

Children
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