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
  • That's easy to explain.

    Collating interviews and questionnaires that would probably form the basis of such research is a Social Sciences problem (not much funding).

    Medical Science on the other hand, thats about big bucks, massive overheads for big international institutions and university research centres. Lots of hi-tec including scanners and brain activity measurements. High profile scientists. International conferences, high profile academic publication in the best refereed journals, professorships, competition between universities.

    So what we do is search for the causes of autism. Never mind that after twenty years we are no nearer agreeing. That's not the point. The objective is big money circulating in prominent universities.

    Ah, but....I hear you say...there are people out there on the autistic spectrum currently struggling to cope, both children and adults. That's a social services problem  (not much funding).

    It would be the death of this or that university if we got mixed up in that sort of thing......

Reply
  • That's easy to explain.

    Collating interviews and questionnaires that would probably form the basis of such research is a Social Sciences problem (not much funding).

    Medical Science on the other hand, thats about big bucks, massive overheads for big international institutions and university research centres. Lots of hi-tec including scanners and brain activity measurements. High profile scientists. International conferences, high profile academic publication in the best refereed journals, professorships, competition between universities.

    So what we do is search for the causes of autism. Never mind that after twenty years we are no nearer agreeing. That's not the point. The objective is big money circulating in prominent universities.

    Ah, but....I hear you say...there are people out there on the autistic spectrum currently struggling to cope, both children and adults. That's a social services problem  (not much funding).

    It would be the death of this or that university if we got mixed up in that sort of thing......

Children
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