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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

  • Thanks for the defence Lost.  You are right, the diagnosis I got could leave someone very confused and doubting themselves. However in my case once I realised the assessor was not saying I didn't have autistic traits I felt much better.  Before I was doubting myself: I wondered if I was wrong to think I was better socially than most autistic people.  Once we sorted out exactly what she meant, the diagnosis (autistic treats, but not meeting the diagnostic criteria because of my social skills) actually fitted with my self-view pretty well.  So though it's been a very emotional and upsetting journey, I have got what I think I most needed in the end.

    I am planning to write an email to my assessor to say that I think just saying 'your not autistic' was the wrong way to tell me, as it sounded like I was imagining it all. If she'd given me the longer version first I think I'd have been much less upset.

    I might get a private assessment at some time in the future, but I'm not considering it any time soon.  I needed some validation, and in the end I got it.  Putting myself through the process again right now seems pretty pointless.  Maybe sometime in the future when I have the money to choose where I go (and maybe when the diagnostic process has improved) it would be interesting to find out more about my brain.  But I've got my validation.  I've got people telling me I can still post on here.  I'm getting a bit of paper saying I have autistic traits: all good stuff! Diagnosis is a luxury: it wasn't available for people like me when I was a kid.

    More points on diagnosis: at the moment we don't know what autism actually IS. As such there's no blood test. There's going to be a grey area and I'm in it!  The current diagnosis is largely based on social skills. Personally I suspect that poor social skills are a secondary effect of having an autistic brain, with sensory issues being the primary symptom (sensory overload interfeering with learning social skills). But sensory issues have only recently been included as part of the diagnosis at all!

    One of the primary theories of what Autism IS is that it's having more neurons and connections in your brain. Normally during early developement the brain grows massive numbers of connections.  These are then 'pruned' (lots of them die) leaving whats needed to work 'efficiently'. In Autistics (or at least some autistics) less pruning happens. As a result the brain continues to respond to stuff that neurotypical brains don't, hence the lack of a 'filter' for our senses.

    So, there would be a spectrum in terms of how much pruning happens. Interestingly there's even some recent research that suggests schizophrenia is caused by over pruning, in which case they are the other side of neurotypical in this respect!

    Also this might interfere to greater or lesser degrees with learning of social skills: more 'noise' and input making it difficult to pick out the relevant stuff to learn. Different enviroments would also influence how much social skills kids managed to learn.

    I don't think autism gets worse: but I am thinking that as you get older there may be aditional problems with health and isolation that make it harder to cope.

    I also think it's quite posible that the reality is that there's several types of autism, and we'll find that out as we learn more about the brain. For me the 'overwiring' model fits, and I do believe there's a spectrum according to the amount of wiring and the effect it has on development.

    I also feel there's advantages to being overwired. If neurotypicals are not aware of a lot of the things I'm aware of, to me that sounds like they are half deaf and blind. Their world must be a bit dull.

    PS: I wouldn't mind getting my glasses paid for though.

Reply

  • Thanks for the defence Lost.  You are right, the diagnosis I got could leave someone very confused and doubting themselves. However in my case once I realised the assessor was not saying I didn't have autistic traits I felt much better.  Before I was doubting myself: I wondered if I was wrong to think I was better socially than most autistic people.  Once we sorted out exactly what she meant, the diagnosis (autistic treats, but not meeting the diagnostic criteria because of my social skills) actually fitted with my self-view pretty well.  So though it's been a very emotional and upsetting journey, I have got what I think I most needed in the end.

    I am planning to write an email to my assessor to say that I think just saying 'your not autistic' was the wrong way to tell me, as it sounded like I was imagining it all. If she'd given me the longer version first I think I'd have been much less upset.

    I might get a private assessment at some time in the future, but I'm not considering it any time soon.  I needed some validation, and in the end I got it.  Putting myself through the process again right now seems pretty pointless.  Maybe sometime in the future when I have the money to choose where I go (and maybe when the diagnostic process has improved) it would be interesting to find out more about my brain.  But I've got my validation.  I've got people telling me I can still post on here.  I'm getting a bit of paper saying I have autistic traits: all good stuff! Diagnosis is a luxury: it wasn't available for people like me when I was a kid.

    More points on diagnosis: at the moment we don't know what autism actually IS. As such there's no blood test. There's going to be a grey area and I'm in it!  The current diagnosis is largely based on social skills. Personally I suspect that poor social skills are a secondary effect of having an autistic brain, with sensory issues being the primary symptom (sensory overload interfeering with learning social skills). But sensory issues have only recently been included as part of the diagnosis at all!

    One of the primary theories of what Autism IS is that it's having more neurons and connections in your brain. Normally during early developement the brain grows massive numbers of connections.  These are then 'pruned' (lots of them die) leaving whats needed to work 'efficiently'. In Autistics (or at least some autistics) less pruning happens. As a result the brain continues to respond to stuff that neurotypical brains don't, hence the lack of a 'filter' for our senses.

    So, there would be a spectrum in terms of how much pruning happens. Interestingly there's even some recent research that suggests schizophrenia is caused by over pruning, in which case they are the other side of neurotypical in this respect!

    Also this might interfere to greater or lesser degrees with learning of social skills: more 'noise' and input making it difficult to pick out the relevant stuff to learn. Different enviroments would also influence how much social skills kids managed to learn.

    I don't think autism gets worse: but I am thinking that as you get older there may be aditional problems with health and isolation that make it harder to cope.

    I also think it's quite posible that the reality is that there's several types of autism, and we'll find that out as we learn more about the brain. For me the 'overwiring' model fits, and I do believe there's a spectrum according to the amount of wiring and the effect it has on development.

    I also feel there's advantages to being overwired. If neurotypicals are not aware of a lot of the things I'm aware of, to me that sounds like they are half deaf and blind. Their world must be a bit dull.

    PS: I wouldn't mind getting my glasses paid for though.

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