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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

  • What I do feel is a serious issue, from what I've read about, seen at workshops and conferences, and seen when supporting others is that the medical profession often only seems to understand Aspergers Syndrom as OCD, Depression, obvious poor eye contact, over-sensitivity and some social skills issues.

    So they then give people a course of psychotherapy and medication, and send them off as "cured". Blissfully unaware that they still have socio-interactive difficulties, sensory problems and fixed thinking that IS NOT TREATABLE using those sorts of medications and psychotherapy.

    So when they then get into more difficulties and have to back for help, this is seen as them not trying or malingering.

    And people whose eye contact isn't so obvious and have found ways and coping strategies for many of their Asperger derived difficulties are not taken seriously because they don't have the obvious "symptoms".

    Much knowledge of adult aspergers still hinges around clinical assessment of people with depression and possible schiziphrenia and other resultant conditions.

    The reality is, if you do not show these obvious characteristics or difficulties there is no help available.

    Aspergers is really an unseen disability. Many people with severe communication and functional difficulties as a consequence don't show it in ways the medical profession recognise.

    So there is possibly an  issue to be raised here that OCD and depression should not be the be-all and end-all of available treatment for Aspergers. And too much focus on this aspect is under-diasgnosing people with real difficulties, who are not getting access to help.

    Maybe the health professionals need more access to the circumstances of people who are not OCD depressed. Or maybe the OCD depressed shout too loudly....

    OK I'm going to get slated for that.......

    But this perspective needed to be expressed.

Reply

  • What I do feel is a serious issue, from what I've read about, seen at workshops and conferences, and seen when supporting others is that the medical profession often only seems to understand Aspergers Syndrom as OCD, Depression, obvious poor eye contact, over-sensitivity and some social skills issues.

    So they then give people a course of psychotherapy and medication, and send them off as "cured". Blissfully unaware that they still have socio-interactive difficulties, sensory problems and fixed thinking that IS NOT TREATABLE using those sorts of medications and psychotherapy.

    So when they then get into more difficulties and have to back for help, this is seen as them not trying or malingering.

    And people whose eye contact isn't so obvious and have found ways and coping strategies for many of their Asperger derived difficulties are not taken seriously because they don't have the obvious "symptoms".

    Much knowledge of adult aspergers still hinges around clinical assessment of people with depression and possible schiziphrenia and other resultant conditions.

    The reality is, if you do not show these obvious characteristics or difficulties there is no help available.

    Aspergers is really an unseen disability. Many people with severe communication and functional difficulties as a consequence don't show it in ways the medical profession recognise.

    So there is possibly an  issue to be raised here that OCD and depression should not be the be-all and end-all of available treatment for Aspergers. And too much focus on this aspect is under-diasgnosing people with real difficulties, who are not getting access to help.

    Maybe the health professionals need more access to the circumstances of people who are not OCD depressed. Or maybe the OCD depressed shout too loudly....

    OK I'm going to get slated for that.......

    But this perspective needed to be expressed.

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