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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

  • Hi, 

    Just to say any discussion like this is likely to be based on personal experiences. It may be that those experiences can't be backed up by evidence but that doesn't, in a conversation, make them any less valid for discussion. 

    There's clearly always going to be very different views around self-diagnosis, especially where this impacts on the way a particular service is run. 

    I don't think it's necessarily helpful to dismiss those concerns as being untrue - they may not reflect any wider problem in service provision but if a particular example is the centre point of a discussion then that has to be treated with an assumption of validity. 

    I'd certainly agree that naming a particular organisation would only raise significant problems in a public forum, especially where the issues involved are challenging. But it's been an interesting starting point for an very valid discussion. 

    It would be great though if we could bear in mind the right of people to express their own personal experiences; that being worried and concerned isn't the same as scare mongering and that we're all hear to enjoy discussions - though admittedly around subjects that people feel passionately about. 

    And I do think it's fair for everyone to bear in mind that there's a few different issues, some looking at current experience, some looking forward to find valid steps to make changes, and the way those play together can sometimes make comments seem more challenging than might have been intended. 

    Always worth clarifying each other's perspectives in a long discussion and giving people the benefit of the doubt.

Reply

  • Hi, 

    Just to say any discussion like this is likely to be based on personal experiences. It may be that those experiences can't be backed up by evidence but that doesn't, in a conversation, make them any less valid for discussion. 

    There's clearly always going to be very different views around self-diagnosis, especially where this impacts on the way a particular service is run. 

    I don't think it's necessarily helpful to dismiss those concerns as being untrue - they may not reflect any wider problem in service provision but if a particular example is the centre point of a discussion then that has to be treated with an assumption of validity. 

    I'd certainly agree that naming a particular organisation would only raise significant problems in a public forum, especially where the issues involved are challenging. But it's been an interesting starting point for an very valid discussion. 

    It would be great though if we could bear in mind the right of people to express their own personal experiences; that being worried and concerned isn't the same as scare mongering and that we're all hear to enjoy discussions - though admittedly around subjects that people feel passionately about. 

    And I do think it's fair for everyone to bear in mind that there's a few different issues, some looking at current experience, some looking forward to find valid steps to make changes, and the way those play together can sometimes make comments seem more challenging than might have been intended. 

    Always worth clarifying each other's perspectives in a long discussion and giving people the benefit of the doubt.

Children
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