People who self-diagnose gaining access to services

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
  • Judging from what is said on some internet forums, many of those who self-diagnose who go on to be given an assessment are NOT given a diagnosis of autism.  Some are diagnosed as having other conditions, or nothing at all.  Some accept this, others don't and are determined to get a second opinion.

    An adult assessment, done properly, is pretty thorough.  Old medical records, school reports, interviews with close family members, together with questionnaires, are used to build up a developmental picture of a persons life.  It is also necessary to have 'significant impairment' to receive a diagnosis.

    I really don't see how people who don't have a diagnosis, and who may never have one because they don't meet the criterea, can assist in getting money for services/research by claiming they are autistic.  Surely the opposite is true? 

    How will it increase the general population's understanding of autism if people who are not autistic claim that they are? 

    There are huge cuts being made in public services.  Surely funders will think twice about funding services for adults with autism if services are being used by people without a diagnosis? 

Reply
  • Judging from what is said on some internet forums, many of those who self-diagnose who go on to be given an assessment are NOT given a diagnosis of autism.  Some are diagnosed as having other conditions, or nothing at all.  Some accept this, others don't and are determined to get a second opinion.

    An adult assessment, done properly, is pretty thorough.  Old medical records, school reports, interviews with close family members, together with questionnaires, are used to build up a developmental picture of a persons life.  It is also necessary to have 'significant impairment' to receive a diagnosis.

    I really don't see how people who don't have a diagnosis, and who may never have one because they don't meet the criterea, can assist in getting money for services/research by claiming they are autistic.  Surely the opposite is true? 

    How will it increase the general population's understanding of autism if people who are not autistic claim that they are? 

    There are huge cuts being made in public services.  Surely funders will think twice about funding services for adults with autism if services are being used by people without a diagnosis? 

Children
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