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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

  • Could you enlarge on your evidence for a, b and c?

    Adult diagnosis has only really been available at all within the last ten to fifteen years, and as you say True Colours it is not easy for adults to get a diagnosis and still impossible in some parts of the county.

    I'm concerned though that you appear, at least from evidences a, b and c to be saying that adults have missed the boat and diagnosis is only relevant in childhood. I'm really quite puzzled by (a) that adults should not be included in the spectrum - this resembles my GP's opposition to my getting a diagnosis on the grounds it only affects children and an adult looking for a diagnosis must be delusional.

    I was born in 1950, so my teens were in the swinging sixties. Those that showed obvious signs were taken out of education as showing early signs of schizophrenia, as for a long time asperger behaviours were confused with that. I was lucky in that my parents, having medical backgrounds, fought against school interventions, because I suffered acute bullying (partly because my peers found it easy to trigger explosive reactions, because I react to close noise and movement), and because I was solitary, daydreaming and lacked friends.

    In the 70s and 80s you were likely to be put on very inappropriate medications.

    Yet even now many people with surprisingly obvious traits aren't being diagnosed until late teens or early twenties.

    It would be most regrettable if it were argued that because aspergers has mostly been addressed in schools within the last thirty years, anyone over 40 has really missed the boat. But because NHS diagnoses are hard to get many people are being drawn towards private and self-diagnosis.

    Granted care is needed. But I do not see any advantage to getting a diagnosis unless you really warrant it, so I don't have quite the same concern as you express about letting people in by claiming (b) that professional diagnosis isn't thorough enough.

    People who didn't get diagnosed young have often lived dreadful lives, and here we get this "private club" attitude, oh we're letting too many in, standards are dropping, etc. Please be more sympathetic (ok we are supposed to lack empathy but that is a grey area).

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  • Could you enlarge on your evidence for a, b and c?

    Adult diagnosis has only really been available at all within the last ten to fifteen years, and as you say True Colours it is not easy for adults to get a diagnosis and still impossible in some parts of the county.

    I'm concerned though that you appear, at least from evidences a, b and c to be saying that adults have missed the boat and diagnosis is only relevant in childhood. I'm really quite puzzled by (a) that adults should not be included in the spectrum - this resembles my GP's opposition to my getting a diagnosis on the grounds it only affects children and an adult looking for a diagnosis must be delusional.

    I was born in 1950, so my teens were in the swinging sixties. Those that showed obvious signs were taken out of education as showing early signs of schizophrenia, as for a long time asperger behaviours were confused with that. I was lucky in that my parents, having medical backgrounds, fought against school interventions, because I suffered acute bullying (partly because my peers found it easy to trigger explosive reactions, because I react to close noise and movement), and because I was solitary, daydreaming and lacked friends.

    In the 70s and 80s you were likely to be put on very inappropriate medications.

    Yet even now many people with surprisingly obvious traits aren't being diagnosed until late teens or early twenties.

    It would be most regrettable if it were argued that because aspergers has mostly been addressed in schools within the last thirty years, anyone over 40 has really missed the boat. But because NHS diagnoses are hard to get many people are being drawn towards private and self-diagnosis.

    Granted care is needed. But I do not see any advantage to getting a diagnosis unless you really warrant it, so I don't have quite the same concern as you express about letting people in by claiming (b) that professional diagnosis isn't thorough enough.

    People who didn't get diagnosed young have often lived dreadful lives, and here we get this "private club" attitude, oh we're letting too many in, standards are dropping, etc. Please be more sympathetic (ok we are supposed to lack empathy but that is a grey area).

Children
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