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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 can't get the help I need because the doctors in my area do not have enough training to properly diagnose autism, and favour pushing a diagnosis of some other disorder that was more trendy when these doctors were being taught in school.

    I know for a fact that I am autistic because of the sensory problems I suffer from that I have seen so many diagnosed autistics complain about on online forums, but I am stuck with diagnosis of a personality disorder instead of a physiological disorder of the brain because these doctors are simply more heavily focused on identifying the former than the latter.

    Something like a schizotypal disorder is only supposed to be diagnosed in the absence of autism, because both are said to cause very similar social difficulties, but there are certain traits which are only present in autism and not in schizotypals, such as sensory difficulties like being caused discomfort and pain by certain sounds, textures etc. I suffer greatly from these things but can't get the support I need because I was diagnosed by an underqualified doctor who does not know the difference.

    How is a self-diagnosis a bad thing when I am in a unique position to understand the exact problems which I face and which needs I have, when these doctors know nothing about these things?

    I have had to sit and rot in a room for my entire life unable to work or do anything else because the "professionals" decided I needed completely ineffective treatments for a disorder which I do not have, instead of getting the right help for the right problems. But of course, they read a few books about some disorders which I do not have, and got a fancy little piece of qualification paper certifying them to identify and treat those things, making them a "professional" and making their opinion more valid than mine, regardless of the fact they know nothing of autism to either diagnose or dismiss it, while I have a lifetime of first hand experience in dealing with problems documented as being specific to autism and not to their favourite little pet disorders.

    If I could get the help I need for autism through a self-diagnosis it would change my life, while a conflicting diagnosis from an undereducated doctor literally ensures that I can have no life to change.

Reply

  • I can't get the help I need because the doctors in my area do not have enough training to properly diagnose autism, and favour pushing a diagnosis of some other disorder that was more trendy when these doctors were being taught in school.

    I know for a fact that I am autistic because of the sensory problems I suffer from that I have seen so many diagnosed autistics complain about on online forums, but I am stuck with diagnosis of a personality disorder instead of a physiological disorder of the brain because these doctors are simply more heavily focused on identifying the former than the latter.

    Something like a schizotypal disorder is only supposed to be diagnosed in the absence of autism, because both are said to cause very similar social difficulties, but there are certain traits which are only present in autism and not in schizotypals, such as sensory difficulties like being caused discomfort and pain by certain sounds, textures etc. I suffer greatly from these things but can't get the support I need because I was diagnosed by an underqualified doctor who does not know the difference.

    How is a self-diagnosis a bad thing when I am in a unique position to understand the exact problems which I face and which needs I have, when these doctors know nothing about these things?

    I have had to sit and rot in a room for my entire life unable to work or do anything else because the "professionals" decided I needed completely ineffective treatments for a disorder which I do not have, instead of getting the right help for the right problems. But of course, they read a few books about some disorders which I do not have, and got a fancy little piece of qualification paper certifying them to identify and treat those things, making them a "professional" and making their opinion more valid than mine, regardless of the fact they know nothing of autism to either diagnose or dismiss it, while I have a lifetime of first hand experience in dealing with problems documented as being specific to autism and not to their favourite little pet disorders.

    If I could get the help I need for autism through a self-diagnosis it would change my life, while a conflicting diagnosis from an undereducated doctor literally ensures that I can have no life to change.

Children
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