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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

  • Shrek, I agree with you. I think though as others have said here that there should be groups for those who are seeking a diagnosis or who don't want one but also groups for those who have gone and got themselves a formal diagnosis.

    I know a group set up by self diagnosed people and it is only once they are up and running that those with a formal diagnosis are invited to join. I also used to attend a peer run Asperger group and sometimes the majority of people attending were self diagnosed and I would feel very Aspie in comparison to them even although I have managed to hold down a job for most of my life and make NT friends. I would be very nervous about meeting up with another person who I didn't know well on a one to one basis regularly but some of the self diagnosed people in this group don't seem to have that problem at all.

    Sometimes I get the feeling that people who are misfits in general feel included if they come to an Asperger group and therefore identify with people on the spectrum. Most people with an ASC are very accepting of difference so it works both ways.

    I think many who self diagnose will be on the spectrum but also there are many who won't. Because it is a spectrum the traits have to be of a certain degree of severity to merit the diagnosis. I think most of my family have strong Autism traits but not to the degree that their lives have been disrupted.

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  • Shrek, I agree with you. I think though as others have said here that there should be groups for those who are seeking a diagnosis or who don't want one but also groups for those who have gone and got themselves a formal diagnosis.

    I know a group set up by self diagnosed people and it is only once they are up and running that those with a formal diagnosis are invited to join. I also used to attend a peer run Asperger group and sometimes the majority of people attending were self diagnosed and I would feel very Aspie in comparison to them even although I have managed to hold down a job for most of my life and make NT friends. I would be very nervous about meeting up with another person who I didn't know well on a one to one basis regularly but some of the self diagnosed people in this group don't seem to have that problem at all.

    Sometimes I get the feeling that people who are misfits in general feel included if they come to an Asperger group and therefore identify with people on the spectrum. Most people with an ASC are very accepting of difference so it works both ways.

    I think many who self diagnose will be on the spectrum but also there are many who won't. Because it is a spectrum the traits have to be of a certain degree of severity to merit the diagnosis. I think most of my family have strong Autism traits but not to the degree that their lives have been disrupted.

Children
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