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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

  • Besides, you describe NHS diagnosis as if it is an absolute.

    My understanding is that some people are refused a diagnosis if it is felt the diagnosis would not be helpful. For example they might be self harming or a suicide risk and the diagnosis could worsen their situation. If that person then presents as self-diagnosed, are they to be refused help?

    I also understand that a diagnosis can be withdrawn, if it is felt that the diagnosis is no longer beneficial or circumstances have changed.

    The diagnosis is largely circumstantial, even if school reports and an older adult can give information. It is mainly about a professional interpreting the same questionnaires and evidents that self-diagnosers use. Plenty of websites warn about self diagnosing illness. So obviously a professional diagnosis is crucial.

    I've yet to see evidence as to why people who self diagnose should be refused access to services, nor reasons why they should be refused access to services special to self-diagnosis. There is now a significant group and some authorities seem to accept their existence - I gave the example of NHS Direct.

    Undoubtedly there are some people using self-diagnosis for the wrong reasons. But the availability of NHS diagnosis is very variable around the country. Some people may not be able to get anything better than self diagnosis.

    I don't see any evidence of self diagnoses competing significantly for resources.

    I don't understand why you feel people who self-diagnosis should be totally excluded from getting help.

Reply

  • Besides, you describe NHS diagnosis as if it is an absolute.

    My understanding is that some people are refused a diagnosis if it is felt the diagnosis would not be helpful. For example they might be self harming or a suicide risk and the diagnosis could worsen their situation. If that person then presents as self-diagnosed, are they to be refused help?

    I also understand that a diagnosis can be withdrawn, if it is felt that the diagnosis is no longer beneficial or circumstances have changed.

    The diagnosis is largely circumstantial, even if school reports and an older adult can give information. It is mainly about a professional interpreting the same questionnaires and evidents that self-diagnosers use. Plenty of websites warn about self diagnosing illness. So obviously a professional diagnosis is crucial.

    I've yet to see evidence as to why people who self diagnose should be refused access to services, nor reasons why they should be refused access to services special to self-diagnosis. There is now a significant group and some authorities seem to accept their existence - I gave the example of NHS Direct.

    Undoubtedly there are some people using self-diagnosis for the wrong reasons. But the availability of NHS diagnosis is very variable around the country. Some people may not be able to get anything better than self diagnosis.

    I don't see any evidence of self diagnoses competing significantly for resources.

    I don't understand why you feel people who self-diagnosis should be totally excluded from getting help.

Children
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