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Not Autisitic enough

Al 1

Hi Everyone

i have just been for an assessment at the Nhs centre in Sheffield. I comcluded a session of 2 hours of assessment mainly verbally asking me questions and at the end of it I was informed that had I been assessed as a child then I would of got an ADOs test. It was explained that whilst I have many Autistic traits then this is not enough to warrant an ADOS test, which feels a bit like telling someone with 1 leg that can't be provided with a wheelchair unless they have no legs.

i went because I had an idea after my son was diagnosed and I also think my dad has had it for years, given I now know quite a lot about the condition. I racked my brain back to my childhood and now present day and I am clearly Autistic, but clearly the view is that if you are not Autistic enough then basically you can't get the same support Which is very fustrating for me. I was further told that basically I had adapted through learnt behaviour and that I found strategies and routines in my life that suit my situation and by default I have indirectly protected myself in some ways. When I basically explainer at the end  of how I could be defined with Aufistic traits, yet effectively not be Autistic enough it was positioned with me that 'The reason I taken this literal view was based on my Austism'.

So basically, I am just sharing this with this network to look for other people's experience where they may feel let down by the process to gain an ADOS test and the relevant support.

Thanks for listening and appreciate any feedback.

Al

Parents

  • hi Al

    I can understand your frustration, but am glad to hear you have learnt to cope in life.

    My teenage daughter was diagnosed as being on the Autistic Spectrum with Aspergers Syndrome and Hypersensitivities last year. I got a long report and a list of recommendations. But because she is doing ok at school, she doesn't get any real support.  The only help she has is to be allowed to go in to school when the other children have gone in, so she can avoid crowds and noise, and a 'time out' card for if classes get too noisy.  

    She also suffers from depression, anxiety and social phobia, but the mental health practitioner told her it was because of her condition and to use breathing and relaxation strategies, but she finds it  hard to do so when she is stresssed.  The GP has prescribed anti-depression medication which has helped a bit.

    Autism isn't a mental illness so the mental health team discharged her, and said they didn't need to see her again, once she was diagnosed at the end of last year.  

    I believe some areas of the country have more support than others but there isn't anything where we are, and because she is doing ok educationally it doesn't look like she would be able to get a Educational Health Care Plan which would give her a benefit.  So she has no support or benefit.

    She doesn't go out socially at all, not even to the local shops, and prefers to be on her own.

    I tell her that she has brilliant artistic skills and creative abilities, and has fantastic attention to detail, and I encourage her in the things she is good at.  I support her as best as I can and I think the best thing is to make her focus on her best talents.

    Al,    I'd say focus on how well you must have learnt to be able to cope with life, and you are lucky to be able to have a job and a good social life, and use what you have learnt to focus on helping your son with the knowledge that you have, so that he will know how to cope with life too.  

    You sound like a very insightful person and go easy on yourself too.

    All the best to you.

    Jen

Reply

  • hi Al

    I can understand your frustration, but am glad to hear you have learnt to cope in life.

    My teenage daughter was diagnosed as being on the Autistic Spectrum with Aspergers Syndrome and Hypersensitivities last year. I got a long report and a list of recommendations. But because she is doing ok at school, she doesn't get any real support.  The only help she has is to be allowed to go in to school when the other children have gone in, so she can avoid crowds and noise, and a 'time out' card for if classes get too noisy.  

    She also suffers from depression, anxiety and social phobia, but the mental health practitioner told her it was because of her condition and to use breathing and relaxation strategies, but she finds it  hard to do so when she is stresssed.  The GP has prescribed anti-depression medication which has helped a bit.

    Autism isn't a mental illness so the mental health team discharged her, and said they didn't need to see her again, once she was diagnosed at the end of last year.  

    I believe some areas of the country have more support than others but there isn't anything where we are, and because she is doing ok educationally it doesn't look like she would be able to get a Educational Health Care Plan which would give her a benefit.  So she has no support or benefit.

    She doesn't go out socially at all, not even to the local shops, and prefers to be on her own.

    I tell her that she has brilliant artistic skills and creative abilities, and has fantastic attention to detail, and I encourage her in the things she is good at.  I support her as best as I can and I think the best thing is to make her focus on her best talents.

    Al,    I'd say focus on how well you must have learnt to be able to cope with life, and you are lucky to be able to have a job and a good social life, and use what you have learnt to focus on helping your son with the knowledge that you have, so that he will know how to cope with life too.  

    You sound like a very insightful person and go easy on yourself too.

    All the best to you.

    Jen

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