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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

  • This thread started by Shrek who claimed that a major autism organisation was giving self-diagnosed people access to services, and that these self-diagnosed people were more likely to attend groups, and that these self diagnosed people wanted groups set up that were only for them and not people with significant impairment.

    I asked to see the eviodence. Fact is, I cannot find this major autism organisation on the web. Maybe I'm looking in the wrong places.

    The thread moved on to private diagnosis being wrong. I asked for evidence. I was told about someone privately diagnosed with ADHD that in the poster's opinion hadn't really got it. I'm still waiting for evidence private diagnosis leads to erroneous diagnosis. I know that NHS diagnosis is usually required for access to services.

    Then it was "over-diagnosis" - apparently there's malpractice in the NHS leading to too many people being diagnosed.

    This all sounds to me like "we had it hard getting a diagnosis - we don't want other people getting a diagnosis easier".

    That may be my misunderstanding of "lack of empathy"

    But until someone proves to me that there are unfair practices favouring self diagnosed people over NHS diagnosed, or unreliable private diagnoses, or a plague of "over-diagnosis" I tend to the view that this is scare-mongering.

    Its all hearsay up to now. And I'm sure it offends people seeking diagnosis, fiinding it difficult to get diagnosis and not knowing what to do.

Reply

  • This thread started by Shrek who claimed that a major autism organisation was giving self-diagnosed people access to services, and that these self-diagnosed people were more likely to attend groups, and that these self diagnosed people wanted groups set up that were only for them and not people with significant impairment.

    I asked to see the eviodence. Fact is, I cannot find this major autism organisation on the web. Maybe I'm looking in the wrong places.

    The thread moved on to private diagnosis being wrong. I asked for evidence. I was told about someone privately diagnosed with ADHD that in the poster's opinion hadn't really got it. I'm still waiting for evidence private diagnosis leads to erroneous diagnosis. I know that NHS diagnosis is usually required for access to services.

    Then it was "over-diagnosis" - apparently there's malpractice in the NHS leading to too many people being diagnosed.

    This all sounds to me like "we had it hard getting a diagnosis - we don't want other people getting a diagnosis easier".

    That may be my misunderstanding of "lack of empathy"

    But until someone proves to me that there are unfair practices favouring self diagnosed people over NHS diagnosed, or unreliable private diagnoses, or a plague of "over-diagnosis" I tend to the view that this is scare-mongering.

    Its all hearsay up to now. And I'm sure it offends people seeking diagnosis, fiinding it difficult to get diagnosis and not knowing what to do.

Children
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