People who self-diagnose gaining access to services

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
  • There is a further point I'd like to make. In this and other threads I got some stick for being borderline. The argument was that because I have good coping strategies, and hold down a job, and manage to be independent, therefore I'm not a "real" Aspie. Hence I'm accessing services I don't deserve.

    I put my hands up. It may be true to some extent. I'm very lucky. I managed to get to 55 without a diagnosis. I'm probably therefore very mild.

    But I haven't claimed any services. I haven't received any allowances - or claimed any. True I got a few hours counselling after formal NHS diagnosis. I respect the diagnosis I got - I really do appreciate and value it. But I haven't asked for any money or taken up services.

    One of the objections raised is I don't have OCD or depression (well none that needs medication or outside help - I admit I'm fortunate there). But OCD/depression is comorbid/consequential of ASD, not definitive. I agree that and dyslexia and other comorbids make things very tough for people on the spectrum.

    However ASD is about communication, sensory issues, focus, routine. Those things I recognise make things very difficult for many people on the spectrum.

    Some people have milder diagnostic systems but other comorbid problems,. It was claimed real autism meant OCD and depression. I don't think that's true.

    I did have a tough childhood, severely bullied, educational set backs, developmental problems etc. I still have real difficulties with informal socialisation, I've just been lucky and got a better grip on formal interaction over many years that enabled me to get qualifications and hold down jobs (not without a lot of difficulty though).

    What I've challenged in these threads and postings is the assumption that someting divides "real" autism/aspergers from supposedly borderline diagnoses, that I think are unwarranted claims without regard for the effects on people.

Reply
  • There is a further point I'd like to make. In this and other threads I got some stick for being borderline. The argument was that because I have good coping strategies, and hold down a job, and manage to be independent, therefore I'm not a "real" Aspie. Hence I'm accessing services I don't deserve.

    I put my hands up. It may be true to some extent. I'm very lucky. I managed to get to 55 without a diagnosis. I'm probably therefore very mild.

    But I haven't claimed any services. I haven't received any allowances - or claimed any. True I got a few hours counselling after formal NHS diagnosis. I respect the diagnosis I got - I really do appreciate and value it. But I haven't asked for any money or taken up services.

    One of the objections raised is I don't have OCD or depression (well none that needs medication or outside help - I admit I'm fortunate there). But OCD/depression is comorbid/consequential of ASD, not definitive. I agree that and dyslexia and other comorbids make things very tough for people on the spectrum.

    However ASD is about communication, sensory issues, focus, routine. Those things I recognise make things very difficult for many people on the spectrum.

    Some people have milder diagnostic systems but other comorbid problems,. It was claimed real autism meant OCD and depression. I don't think that's true.

    I did have a tough childhood, severely bullied, educational set backs, developmental problems etc. I still have real difficulties with informal socialisation, I've just been lucky and got a better grip on formal interaction over many years that enabled me to get qualifications and hold down jobs (not without a lot of difficulty though).

    What I've challenged in these threads and postings is the assumption that someting divides "real" autism/aspergers from supposedly borderline diagnoses, that I think are unwarranted claims without regard for the effects on people.

Children
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