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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 do not rely on charity, I am not dependent (a horrible word which I feel is often abused), but I do need support to live an independent life. Support is an enabler, a hand-up not a hand-out. And I too have achieved a lot in my life and I am very motivated, so I think it is patronizing to claim that people who need support are not motivated just because they have real problems.

    I agree with you Longman about the need for more awareness of ASD in adults, but I disagree about widening the definition of AS to such a point that it becomes meaningless. Of course you can have AS and hold down a job and be successful in your own way (you are living proof of this Longman), but AS is diagnosed by a set of criteria which are quite rightly very strict and you have to show that you meet the criteria. It is true that many people with AS who need support slip through the net because their condition is not obvious, and yet they struggle with their 'hidden' problems. Only a trained professional can ascertain whether their issues are caused by AS or something else. Usually the diagnosis is correct, whether it is done privately or otherwise, but private medicine always carries the risk of diagnoses being 'bought', which is not such a concern with publicly funded medicine. 

    I am very concerned that widening the definition to include people who are no more than 'geeks' or 'eccentrics', but who have no problems, will make the diagnosis meaningless and this will be a bad thing for people with AS who struggle with the condition.

Reply

  • I do not rely on charity, I am not dependent (a horrible word which I feel is often abused), but I do need support to live an independent life. Support is an enabler, a hand-up not a hand-out. And I too have achieved a lot in my life and I am very motivated, so I think it is patronizing to claim that people who need support are not motivated just because they have real problems.

    I agree with you Longman about the need for more awareness of ASD in adults, but I disagree about widening the definition of AS to such a point that it becomes meaningless. Of course you can have AS and hold down a job and be successful in your own way (you are living proof of this Longman), but AS is diagnosed by a set of criteria which are quite rightly very strict and you have to show that you meet the criteria. It is true that many people with AS who need support slip through the net because their condition is not obvious, and yet they struggle with their 'hidden' problems. Only a trained professional can ascertain whether their issues are caused by AS or something else. Usually the diagnosis is correct, whether it is done privately or otherwise, but private medicine always carries the risk of diagnoses being 'bought', which is not such a concern with publicly funded medicine. 

    I am very concerned that widening the definition to include people who are no more than 'geeks' or 'eccentrics', but who have no problems, will make the diagnosis meaningless and this will be a bad thing for people with AS who struggle with the condition.

Children
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