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
  • I will try and address each of your points Longman.

     

    The idea that Government Agencies do not understand the constraints on people with 'lesser impairment' is something that I agree with. The manifestations of AS in these instances can be very  subtle and yet the person can struggle to perform in a fast-paced work environment. Any mistakes could be misperceived as laziness, defiance or stupidity and bullying could result from this, which often leads such individuals to pursue an AS diagnosis in order to get some work-place support. I agree that more research needs to be carried out with regard to the needs of this group, members of which are are apparently coping well but are actually experiencing significant stress.

    People with lesser-impairment should be given support if there are grounds for this. For example, stress management training, counselling and cognitive behavioural therapy are all techniqies that can and should be offered to this group. I am for support for all people with AS, no matter  how mild, so I agree with you here.

    People can be affected by AS in many different ways, but we are all significantly impaired one way or the other, it is just that different areas will be a problem for different people. Some people will be extremely rigid and anxious, but only have mild social difficulties, other people will have severe social deficits, but could be relatively flexible and calm.  Clinicians should avoid taking a one-size-fits all approach, but the key criterion for diagnosis has to be 'significant impairment' at some stage in the persons' life. THat said, we should understand that people with AS can and do work and can lead productive lives, while still having a 'significant impairment' in one or more areas of functioning. The key word is 'significant': many people who are otherwise 'normal' can struggle to make friends and be introverted, but this does not necessarily mean that they are on the spectrum, which leads me on to my next point: AS and other mental conditions are diagnosed using an objective criteria and yet clinicians have to use their own subjective judgement and interpretation; some clinicians are more strict than others and this necessarily means that misdiagnosis can occur, although experts disagree as to how common this is, and to my knowledge little or no research has been fully carried out in this area.

     

    Regarding my cousin, my immediate family know him very well and we know that he has a very 'normal' life: he has won many medals for excellant salesmanship in a fast paced retail environment, he is an active member of an orchestra, and he is in a successful long-term relationship. He is a bubbly, chatty and highly sociable young man. He has never been bullied, coped very well at school until the last few years when he has rebelled and played truent - as many kids do!. But his strict parents were having none of it, so they forked out a small fortune to get him privately diagnosed with ADHD in the hope that this would get him academic support. I think that he should have been allowed to pursue a vocational course because academics is not for everyone, but his parents want him to enter a profession.  I do not think he has ADHD and neither do my parents, although of course we have not told his family.

    I agree that not all people with AS have anxiety, OCD or depression and I have never argued this. But if they don't have a mental health issue they will still  struggle significantly in some other area, be it the need for routine or sensory issues, which can create stress and make it hard for them to get on in the world, although this is not impossible given understanding from others.

    Finally, I agree that AS cannot be cured and that professionals often do not understand this - I have even experienced this problem myself, so I understand that this an issue that needs to be addressed.

     

     

     

     

Reply
  • I will try and address each of your points Longman.

     

    The idea that Government Agencies do not understand the constraints on people with 'lesser impairment' is something that I agree with. The manifestations of AS in these instances can be very  subtle and yet the person can struggle to perform in a fast-paced work environment. Any mistakes could be misperceived as laziness, defiance or stupidity and bullying could result from this, which often leads such individuals to pursue an AS diagnosis in order to get some work-place support. I agree that more research needs to be carried out with regard to the needs of this group, members of which are are apparently coping well but are actually experiencing significant stress.

    People with lesser-impairment should be given support if there are grounds for this. For example, stress management training, counselling and cognitive behavioural therapy are all techniqies that can and should be offered to this group. I am for support for all people with AS, no matter  how mild, so I agree with you here.

    People can be affected by AS in many different ways, but we are all significantly impaired one way or the other, it is just that different areas will be a problem for different people. Some people will be extremely rigid and anxious, but only have mild social difficulties, other people will have severe social deficits, but could be relatively flexible and calm.  Clinicians should avoid taking a one-size-fits all approach, but the key criterion for diagnosis has to be 'significant impairment' at some stage in the persons' life. THat said, we should understand that people with AS can and do work and can lead productive lives, while still having a 'significant impairment' in one or more areas of functioning. The key word is 'significant': many people who are otherwise 'normal' can struggle to make friends and be introverted, but this does not necessarily mean that they are on the spectrum, which leads me on to my next point: AS and other mental conditions are diagnosed using an objective criteria and yet clinicians have to use their own subjective judgement and interpretation; some clinicians are more strict than others and this necessarily means that misdiagnosis can occur, although experts disagree as to how common this is, and to my knowledge little or no research has been fully carried out in this area.

     

    Regarding my cousin, my immediate family know him very well and we know that he has a very 'normal' life: he has won many medals for excellant salesmanship in a fast paced retail environment, he is an active member of an orchestra, and he is in a successful long-term relationship. He is a bubbly, chatty and highly sociable young man. He has never been bullied, coped very well at school until the last few years when he has rebelled and played truent - as many kids do!. But his strict parents were having none of it, so they forked out a small fortune to get him privately diagnosed with ADHD in the hope that this would get him academic support. I think that he should have been allowed to pursue a vocational course because academics is not for everyone, but his parents want him to enter a profession.  I do not think he has ADHD and neither do my parents, although of course we have not told his family.

    I agree that not all people with AS have anxiety, OCD or depression and I have never argued this. But if they don't have a mental health issue they will still  struggle significantly in some other area, be it the need for routine or sensory issues, which can create stress and make it hard for them to get on in the world, although this is not impossible given understanding from others.

    Finally, I agree that AS cannot be cured and that professionals often do not understand this - I have even experienced this problem myself, so I understand that this an issue that needs to be addressed.

     

     

     

     

Children
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