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
  • Hope, I clearly cannot dissuade you from your purist perspective on diagnosis.

    But how do we get visibility for adults on the spectrum? Apart from NAS undertaking campaigns?

    How do we get research funded to better understand autism in adults?

    How do we change the misleading perceptions that health professionals and government ministers have of adults with autism?

    As a group mostly without gainful employment we cannot generate funds to help our cause. As a group characterised by the disability we cannot self-advocate to change how we are perceived.

    Obviously we are grateful to NAS for standing up for us.

    But I fail to see how this purist stance does anything to change our current situation.

Reply
  • Hope, I clearly cannot dissuade you from your purist perspective on diagnosis.

    But how do we get visibility for adults on the spectrum? Apart from NAS undertaking campaigns?

    How do we get research funded to better understand autism in adults?

    How do we change the misleading perceptions that health professionals and government ministers have of adults with autism?

    As a group mostly without gainful employment we cannot generate funds to help our cause. As a group characterised by the disability we cannot self-advocate to change how we are perceived.

    Obviously we are grateful to NAS for standing up for us.

    But I fail to see how this purist stance does anything to change our current situation.

Children
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