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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

  • I'll find out if I'm "officially" autistic next week. I've got by reasonably well for decades without having the slightest awareness that I may be different. But with hindsight I can see that things have been slowly going wrong for a very long time, and there are a lot of things I could have done differently if I'd known what I think I know now. 10 years ago, when I was just regarded as being depressed, a diagnosis could have prevented me from doing things that have got my life into a mess I haven't been able to get out of. Maybe a self-diagnosis at that stage would have been enough, and I could have prevented the problems arising, but I wasted a lot of time being treated for the wrong problem, and got misled into thinking I was cured of whatever had been troubling me all my life.

    I'd much rather have a clear diagnosis, and be told that there's no support available. At least I would know for sure what I have to deal with on my own. If things get worse in the future, or I run into trouble, a piece of paper with an official diagnosis could help to protect me. It could prevent me being given wrong treatment, demonstrate to anyone who questions or criticses my quirky ways that there's a genuine reason for it, and protect me from the heavy hand of bureaucracy or the law if I get into trouble. It could also save the country money in the future, as I've lost a lot of the financial security I would have had, due to what I now think are autism related bad decisions I've made.

    My life has been on hold for 17 months so far, while I wait for a diagnosis to confirm if I'm on the right track. I dare not take the drastic action I may need to take to get out of the situation I'm in, until I get confirmation that what I've worked out for myself is right. I'm not expecting much, if any, support to come out of it, but if something is offered it could make a big difference. All I want is expert confirmation, or to be told it's not what I think it is, before I act. I'm getting too old and tired to get things wrong again.

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  • I'll find out if I'm "officially" autistic next week. I've got by reasonably well for decades without having the slightest awareness that I may be different. But with hindsight I can see that things have been slowly going wrong for a very long time, and there are a lot of things I could have done differently if I'd known what I think I know now. 10 years ago, when I was just regarded as being depressed, a diagnosis could have prevented me from doing things that have got my life into a mess I haven't been able to get out of. Maybe a self-diagnosis at that stage would have been enough, and I could have prevented the problems arising, but I wasted a lot of time being treated for the wrong problem, and got misled into thinking I was cured of whatever had been troubling me all my life.

    I'd much rather have a clear diagnosis, and be told that there's no support available. At least I would know for sure what I have to deal with on my own. If things get worse in the future, or I run into trouble, a piece of paper with an official diagnosis could help to protect me. It could prevent me being given wrong treatment, demonstrate to anyone who questions or criticses my quirky ways that there's a genuine reason for it, and protect me from the heavy hand of bureaucracy or the law if I get into trouble. It could also save the country money in the future, as I've lost a lot of the financial security I would have had, due to what I now think are autism related bad decisions I've made.

    My life has been on hold for 17 months so far, while I wait for a diagnosis to confirm if I'm on the right track. I dare not take the drastic action I may need to take to get out of the situation I'm in, until I get confirmation that what I've worked out for myself is right. I'm not expecting much, if any, support to come out of it, but if something is offered it could make a big difference. All I want is expert confirmation, or to be told it's not what I think it is, before I act. I'm getting too old and tired to get things wrong again.

Children
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