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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

  • How can a diagnosis be withdrawn? ASD is a LIFELONG  condition caused by a neuro-chemical imbalance or structural difference in the brain. The person has had problems since infancy and the parents would have always known something was different about their child. It is true, a person can improve significantly in some, if not all , areas of functioning but they will still have ASD. What matters is that in childhood, at least, there were significant impairments, and even if a person has improved significantly, these impairments can throw up new problems such as mental health problems. Sometimes diagnoses are removed by inexperienced professionals who have no idea how ASD works, but I don't think it is likely that this happens often.

     

    I think that most professionals give correct diagnoses. The professional has been trained, they have seen ASD in many people, should know the different manifestations and therefore are in the right place to confirm or debunk, as the case may be, a person's suspicions that they may have ASD. Think about it like this: should people who self-diagnose with a chronic physical condition be offered medicine and therapy prior to official diagnosis? The answer would be no, and this could even be dangerous, let alone the fact that it diverts funding away from those with an official diagnosis. Clearly ASD is different from a 'physical' condition in that it is 'invisible' and there are no blood-tests or brain scans to diagnose it at the present time. But there is still objective criteria that a professional has to use in order to diagnose correctly. Possible mis-diagnosis may well occur because of the subjective interpretation aspect of diagnosis, but I think that over-diagnosis is not that common, although it is still a concern, particularly if the definition is widened still further!.

    Also, I agree with Shek: relevant support should be provided before diagnosis. For example I saw a support worker from the mental health team before I was diagnosed, for an hour each week, but before diagnosis I did not receive any asperger specific support. And I understood the reason: I had not yet been diagnosed, so how I could be sure I had ASD without professional validation? We like to think that the individual knows best about themselves, which is true to a point, but we can also get ourselves wrong!. Our emotions can outsway our reason and so we need an objective analysis too, which is where the professional comes into the equation.

Reply

  • How can a diagnosis be withdrawn? ASD is a LIFELONG  condition caused by a neuro-chemical imbalance or structural difference in the brain. The person has had problems since infancy and the parents would have always known something was different about their child. It is true, a person can improve significantly in some, if not all , areas of functioning but they will still have ASD. What matters is that in childhood, at least, there were significant impairments, and even if a person has improved significantly, these impairments can throw up new problems such as mental health problems. Sometimes diagnoses are removed by inexperienced professionals who have no idea how ASD works, but I don't think it is likely that this happens often.

     

    I think that most professionals give correct diagnoses. The professional has been trained, they have seen ASD in many people, should know the different manifestations and therefore are in the right place to confirm or debunk, as the case may be, a person's suspicions that they may have ASD. Think about it like this: should people who self-diagnose with a chronic physical condition be offered medicine and therapy prior to official diagnosis? The answer would be no, and this could even be dangerous, let alone the fact that it diverts funding away from those with an official diagnosis. Clearly ASD is different from a 'physical' condition in that it is 'invisible' and there are no blood-tests or brain scans to diagnose it at the present time. But there is still objective criteria that a professional has to use in order to diagnose correctly. Possible mis-diagnosis may well occur because of the subjective interpretation aspect of diagnosis, but I think that over-diagnosis is not that common, although it is still a concern, particularly if the definition is widened still further!.

    Also, I agree with Shek: relevant support should be provided before diagnosis. For example I saw a support worker from the mental health team before I was diagnosed, for an hour each week, but before diagnosis I did not receive any asperger specific support. And I understood the reason: I had not yet been diagnosed, so how I could be sure I had ASD without professional validation? We like to think that the individual knows best about themselves, which is true to a point, but we can also get ourselves wrong!. Our emotions can outsway our reason and so we need an objective analysis too, which is where the professional comes into the equation.

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