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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 don’t have a problem with undiagnosed adults trying to make diagnostic services more readily available.  But I do have a problem with people claiming to be autistic when they don’t have a diagnosis.  I also object to those who are self-diagnosed claiming to be representative of all autistics.

    I do think it is profoundly wrong for organisations set up to offer services for people with autism, to offer services to people on self-diagnosis alone.

    Many of these people will never get a diagnosis, even if assessed.  They just don’t meet the criteria. 

    Presently, autism is understood as being a spectrum.  It could therefore be argued that everyone is somewhere on the spectrum i.e. from NT to severely autistic (most people, if they look hard enough, will find that they have certain ‘Aspie traits’).  But this would make it meaningless.  It would be like saying someone who is feeling a bit down one day is therefore clinically depressed.  Or take the example of Simon Baron-Cohen’s theory that autism is an extreme form of maleness, does that mean (if you accept this theory) that all men are autistic because they are all somewhere on the ‘maleness’ spectrum? There has to be criteria for a diagnosis of autism and access to services.  To be given a diagnosis, there has to be ‘significant impairment’.  Those with a diagnosis need services.  Having ‘articulate and determined adults’ claiming they are autistic without having a diagnosis gives a false impression to the public, and potential or actual funders, of the real difficulties faced by adults with autism.  It threatens what services we already have.

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  • I don’t have a problem with undiagnosed adults trying to make diagnostic services more readily available.  But I do have a problem with people claiming to be autistic when they don’t have a diagnosis.  I also object to those who are self-diagnosed claiming to be representative of all autistics.

    I do think it is profoundly wrong for organisations set up to offer services for people with autism, to offer services to people on self-diagnosis alone.

    Many of these people will never get a diagnosis, even if assessed.  They just don’t meet the criteria. 

    Presently, autism is understood as being a spectrum.  It could therefore be argued that everyone is somewhere on the spectrum i.e. from NT to severely autistic (most people, if they look hard enough, will find that they have certain ‘Aspie traits’).  But this would make it meaningless.  It would be like saying someone who is feeling a bit down one day is therefore clinically depressed.  Or take the example of Simon Baron-Cohen’s theory that autism is an extreme form of maleness, does that mean (if you accept this theory) that all men are autistic because they are all somewhere on the ‘maleness’ spectrum? There has to be criteria for a diagnosis of autism and access to services.  To be given a diagnosis, there has to be ‘significant impairment’.  Those with a diagnosis need services.  Having ‘articulate and determined adults’ claiming they are autistic without having a diagnosis gives a false impression to the public, and potential or actual funders, of the real difficulties faced by adults with autism.  It threatens what services we already have.

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