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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

  • Scorpion has highlighted another issue - ways of finding out about coping strategies that work.

    Although when I got diagnosed I got some follow up counselling, I basically had to find this out for myself. I had certain advantages in being both a teacher and disability tutor that I had income and other reasons for research (to help others who I was helping to support), so I bought lots of books - over the years some sixty books. I've recently pruned out about a third of these.

    The problem is there are just too many of these, from too many different angles, and at very varying standards. I bought some that looked potentially good and seemed to have the right content, but proved to be written by clinicians whose knowledge of Autism was limited to a few patients they had seen, and whose contribution to understanding was largely guesswork, certainly without academic underpinning or networking.

    I even encountered one book on aspergers in higher education written by a team of academics based on their experience of ONE student!  When I took this up with them they were unhelpfully defensive and indignant. They didn't see anything wrong in doing this.

    The problem as I see it is a proliferation of books. Everyone is on (grim metaphor) the ASD "bandwaggon".  Some publishers churn out book after book with little real concern about whether this is just overwhelming people with unhelpful material.

    I have found very few books that actually help with coping strategies. Some of the best are the autobiographical ones (of which the stars include Marc Fleisher and Luke Jackson) but again they are one individual's response. The worst are those do gooder ones with lots of blank tables for you to structure your own life around a few untried homilies and "old wives' tales" - loads of these so-called self help books by people with barely any real grasp of what people need.

    I find this really worrying because a lot of people out there desperately need good coping strategy guidelines. Surely this should be a priority. It is clear that post-diagnosis support is non-existent, unless you have other clinical problems requiring CBT or drugs. So really good, authoritative books on coping are vital.

    If some publishers could just stop and think for a minute what it is they are trying to achieve, we might get somewhere.

    But also could NAS have a serious think about this. It means collating the experiences of a wide range of people on the spectrum to find out how they cope and drawing together an accessible and readable synthesis.

    Not difficult surely? And it would make many lives much more livable.

Reply

  • Scorpion has highlighted another issue - ways of finding out about coping strategies that work.

    Although when I got diagnosed I got some follow up counselling, I basically had to find this out for myself. I had certain advantages in being both a teacher and disability tutor that I had income and other reasons for research (to help others who I was helping to support), so I bought lots of books - over the years some sixty books. I've recently pruned out about a third of these.

    The problem is there are just too many of these, from too many different angles, and at very varying standards. I bought some that looked potentially good and seemed to have the right content, but proved to be written by clinicians whose knowledge of Autism was limited to a few patients they had seen, and whose contribution to understanding was largely guesswork, certainly without academic underpinning or networking.

    I even encountered one book on aspergers in higher education written by a team of academics based on their experience of ONE student!  When I took this up with them they were unhelpfully defensive and indignant. They didn't see anything wrong in doing this.

    The problem as I see it is a proliferation of books. Everyone is on (grim metaphor) the ASD "bandwaggon".  Some publishers churn out book after book with little real concern about whether this is just overwhelming people with unhelpful material.

    I have found very few books that actually help with coping strategies. Some of the best are the autobiographical ones (of which the stars include Marc Fleisher and Luke Jackson) but again they are one individual's response. The worst are those do gooder ones with lots of blank tables for you to structure your own life around a few untried homilies and "old wives' tales" - loads of these so-called self help books by people with barely any real grasp of what people need.

    I find this really worrying because a lot of people out there desperately need good coping strategy guidelines. Surely this should be a priority. It is clear that post-diagnosis support is non-existent, unless you have other clinical problems requiring CBT or drugs. So really good, authoritative books on coping are vital.

    If some publishers could just stop and think for a minute what it is they are trying to achieve, we might get somewhere.

    But also could NAS have a serious think about this. It means collating the experiences of a wide range of people on the spectrum to find out how they cope and drawing together an accessible and readable synthesis.

    Not difficult surely? And it would make many lives much more livable.

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