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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

  • I also feel the need to point out that, despite campaigns by NAS, adult autism is practically invisible, little understood and not taken seriously. Why?

    Children with AS are very visibly supported by parent groups, and form the core of how NAS got off the ground. But parent groups don't seem to cater for adults (though what happens to the "children" when they grow up remains a mystery).

    Public perception (and Health professionals perception) is still governed by what parents' groups do.

    Adults with autism/aspergers have little in the way of funds to support campaigns on their behalf. We are dependent on spin-offs from parent group funding. Very few find work or hold down a job. Those that do go without promotion and have a hard time. So we cannot fund visibility campaigns ourselves.

    What wearies me about this thread (and others in a similar vein) is the contention that the only REAL people with AS/Aspergers are helpless and totally dependent on other people or hand-outs. This may be true for many people on the spectrum. But the argument doesn't win support from the NT world.

    If you are going to argue that anyone with motivation isn't REAL. Anyone who has achieved isn't REAL. Anyone who has held down a job isn't REAL. You send a message that adults with AS can only function on charity. That message isn't doing us any good.

    But if people who are diagnosed privately, or self diagnose, are in a position financially to PAY for services, their active funding may benefit us all in the long run. So I see the widening of the definition of AS as beneficial long term.

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  • I also feel the need to point out that, despite campaigns by NAS, adult autism is practically invisible, little understood and not taken seriously. Why?

    Children with AS are very visibly supported by parent groups, and form the core of how NAS got off the ground. But parent groups don't seem to cater for adults (though what happens to the "children" when they grow up remains a mystery).

    Public perception (and Health professionals perception) is still governed by what parents' groups do.

    Adults with autism/aspergers have little in the way of funds to support campaigns on their behalf. We are dependent on spin-offs from parent group funding. Very few find work or hold down a job. Those that do go without promotion and have a hard time. So we cannot fund visibility campaigns ourselves.

    What wearies me about this thread (and others in a similar vein) is the contention that the only REAL people with AS/Aspergers are helpless and totally dependent on other people or hand-outs. This may be true for many people on the spectrum. But the argument doesn't win support from the NT world.

    If you are going to argue that anyone with motivation isn't REAL. Anyone who has achieved isn't REAL. Anyone who has held down a job isn't REAL. You send a message that adults with AS can only function on charity. That message isn't doing us any good.

    But if people who are diagnosed privately, or self diagnose, are in a position financially to PAY for services, their active funding may benefit us all in the long run. So I see the widening of the definition of AS as beneficial long term.

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