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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

  • That's the nub of the problem. Until very recently the majority of adult diagnoses were made by clinicians, including psychiatrists, treating other disorders where autism or aspergers was identified as contributory. So there are many people around with diagnoses of schizotypical disorders where the clinicians have not been able to distinguish the presence of an ASD.

    In contrast those adult diagnosis of people who recognise the symptoms in themselves and seek a diagnosis are for the most part being processed through an entirely separate network.

    And self-diagnosis and private diagnosis doesn't seem to access services.

    Unfortunately health workers haven't managed the joined up thinking yet, though this is not helped by the economic climate and the various short-sighted amalgamations, reorganisations and privatisations of clinical services (due to politicians who know absolutely nothing about either diagnostic route).

    What I feel is saddest about this whole debate is that those of us who have struggled through life without diagnosis until late, and who found solutions and strategies to help fit in better are largely ignored by health professionals, because we sometimes no longer seem to have diagnosable symptoms.

    Even stranger, the accumulated knowledge of all those late diagnosed adults in terms of their coping strategies and techniques for fitting in, isn't being fed back into the provisions for helping young people diagnosed early in childhood. We are still proliferating the mistakes with children, because no-one can agree or assimilate that able adults could have experienced similarly difficult lives when younger.

    I'm left wondering who has the Aspergers? Us? Or the health professionals?

Reply

  • That's the nub of the problem. Until very recently the majority of adult diagnoses were made by clinicians, including psychiatrists, treating other disorders where autism or aspergers was identified as contributory. So there are many people around with diagnoses of schizotypical disorders where the clinicians have not been able to distinguish the presence of an ASD.

    In contrast those adult diagnosis of people who recognise the symptoms in themselves and seek a diagnosis are for the most part being processed through an entirely separate network.

    And self-diagnosis and private diagnosis doesn't seem to access services.

    Unfortunately health workers haven't managed the joined up thinking yet, though this is not helped by the economic climate and the various short-sighted amalgamations, reorganisations and privatisations of clinical services (due to politicians who know absolutely nothing about either diagnostic route).

    What I feel is saddest about this whole debate is that those of us who have struggled through life without diagnosis until late, and who found solutions and strategies to help fit in better are largely ignored by health professionals, because we sometimes no longer seem to have diagnosable symptoms.

    Even stranger, the accumulated knowledge of all those late diagnosed adults in terms of their coping strategies and techniques for fitting in, isn't being fed back into the provisions for helping young people diagnosed early in childhood. We are still proliferating the mistakes with children, because no-one can agree or assimilate that able adults could have experienced similarly difficult lives when younger.

    I'm left wondering who has the Aspergers? Us? Or the health professionals?

Children
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