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People who self-diagnose gaining access to services

Shek

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

  • My point is that those self-diagnosing may get things moving. You may find that bizarre. It is often the way of things.

    Although you have found an organisation that appears to be helping people who self diagnose, I doubt if those self diagnosing will be able to claim DSA or income support. I suspect it will be an indulgence by those who can afford it.

    Hence I don't think they will detract from existing services. But their apparent eagerness to make a case may bring new money into play.

    Although parents' groups exert considerable influence, people on the spectrum have difficulties making their case heard. Too many have low income or are dependent on support. Charitable advocacy has a hard shout.

    The involvement of such parties, however dubious as you may perceive them may bring benefits. It could also create risks, such as the widening of interim diagnoses such as PD-NOS, with associated loss of support.

    But some major dynamic is needed to get AS/Aspergers into full focus.

Reply

  • My point is that those self-diagnosing may get things moving. You may find that bizarre. It is often the way of things.

    Although you have found an organisation that appears to be helping people who self diagnose, I doubt if those self diagnosing will be able to claim DSA or income support. I suspect it will be an indulgence by those who can afford it.

    Hence I don't think they will detract from existing services. But their apparent eagerness to make a case may bring new money into play.

    Although parents' groups exert considerable influence, people on the spectrum have difficulties making their case heard. Too many have low income or are dependent on support. Charitable advocacy has a hard shout.

    The involvement of such parties, however dubious as you may perceive them may bring benefits. It could also create risks, such as the widening of interim diagnoses such as PD-NOS, with associated loss of support.

    But some major dynamic is needed to get AS/Aspergers into full focus.

Children
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