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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, I hear your frustration, I have been diagnosed last year. I had 2 interviews beforehand, and while it was clear I had autistic traits, they also considered whether it would be beneficial for me to get the diagnosis. I had hoped it would open up other lines of support, but that has not happened. In some ways it has blocked support, as one of the mental health teams in my region has refused to work with me because my needs are too complex (anxiety, depression, ocd). 

    As they have told you would have got a diagnosis as a child, seems like age discrimination to me. Personally I would complain to the nhs trust (that's what I am doing but for different reasons). Support for autistic adults is very minimal, focus is on supporting children and the parents of those children.

    Again they mention you have adapted through learnt behaviour, that is just a given for a late diagnosis. Again something I am fighting for, complaining to the nhs trust. Whilst I have learned coping mechanism, I still struggle and am just surviving, not living. I feel they take the opinion that, you have done well supporting yourself, you can just continue doing that. This does really worry me, in to how many poor souls have not made it through, I had had 2 suicide attempts in the past, and have felt very close to another attempt recently.

    Random

Reply

  • Hi, I hear your frustration, I have been diagnosed last year. I had 2 interviews beforehand, and while it was clear I had autistic traits, they also considered whether it would be beneficial for me to get the diagnosis. I had hoped it would open up other lines of support, but that has not happened. In some ways it has blocked support, as one of the mental health teams in my region has refused to work with me because my needs are too complex (anxiety, depression, ocd). 

    As they have told you would have got a diagnosis as a child, seems like age discrimination to me. Personally I would complain to the nhs trust (that's what I am doing but for different reasons). Support for autistic adults is very minimal, focus is on supporting children and the parents of those children.

    Again they mention you have adapted through learnt behaviour, that is just a given for a late diagnosis. Again something I am fighting for, complaining to the nhs trust. Whilst I have learned coping mechanism, I still struggle and am just surviving, not living. I feel they take the opinion that, you have done well supporting yourself, you can just continue doing that. This does really worry me, in to how many poor souls have not made it through, I had had 2 suicide attempts in the past, and have felt very close to another attempt recently.

    Random

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