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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 have never said that it is not possible to have aspergers and not to succeed, if by success we mean battling against the anxiety every day, getting out of the house and volunteering or working in the community - a huge success for those of us, like myself, who have panic attacks, OCD, and constant anxiety and tension. I can't hold down a paid job at present because of my complex anxieties and visual-spatial deficits, but this does mean that I have given up hope of ever getting a job - I would really like to work in a supportive environment, and I certainly am not dependant. Sure, I receive state assistance and benefits, but I am entitled to these at the moment because of my disability and mental health problems. But I am very independent and headstrong, constantly challenging myself, and I do LOADS of voluntary work such as till work at Age UK and Oxfam etc. My support workers help me with this, but they stand back when I can do a voluntary job on my own. So I am not helpless or a victim of my fate, but I am an agent and an actor: I constantly push the boundaries all the time and raise the ceiling a bit higher.

    But I get frustrated when I hear about incredibly successful and social people claiming that they have a condition like aspergers. As my Grandpa once said, it seems as though any one can claim to have a condition these days, and this does a disservice to those who really struggle every day, like myself and countless others. This is not a comment directed at you Longman because you have already pointed out your own struggles, which are genuine, and you clearly have aspergers as you have received an in depth NHS diagnosis. But misdiagnosis will inevitably happen in a condition like aspergers, which does not have clear-cut boundaries between it and 'normality'.

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  • I have never said that it is not possible to have aspergers and not to succeed, if by success we mean battling against the anxiety every day, getting out of the house and volunteering or working in the community - a huge success for those of us, like myself, who have panic attacks, OCD, and constant anxiety and tension. I can't hold down a paid job at present because of my complex anxieties and visual-spatial deficits, but this does mean that I have given up hope of ever getting a job - I would really like to work in a supportive environment, and I certainly am not dependant. Sure, I receive state assistance and benefits, but I am entitled to these at the moment because of my disability and mental health problems. But I am very independent and headstrong, constantly challenging myself, and I do LOADS of voluntary work such as till work at Age UK and Oxfam etc. My support workers help me with this, but they stand back when I can do a voluntary job on my own. So I am not helpless or a victim of my fate, but I am an agent and an actor: I constantly push the boundaries all the time and raise the ceiling a bit higher.

    But I get frustrated when I hear about incredibly successful and social people claiming that they have a condition like aspergers. As my Grandpa once said, it seems as though any one can claim to have a condition these days, and this does a disservice to those who really struggle every day, like myself and countless others. This is not a comment directed at you Longman because you have already pointed out your own struggles, which are genuine, and you clearly have aspergers as you have received an in depth NHS diagnosis. But misdiagnosis will inevitably happen in a condition like aspergers, which does not have clear-cut boundaries between it and 'normality'.

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