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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 all.  Not posted for quite a while, and I was coming on to post my own post, but this seems the right place.

    I used to post a lot last year, but as I wasn't diagnosed I always felt I might be 'a fake' in some ways giving my experience or opinions based on my experience.  Still I found lots that I related to here. And considering myself as autistic helped me deal better with problems I have such as meltdowns. And I felt that maybe having an official diagnosis would help with problems I have in real life: a few messes with finances and paperwork which people might possibly be more understanding about. I always knew that I had less problems than many on here with communication and social skills, but maybe that's because I'm female, had a life that has taught me strategies etc etc.

    So I was delighted when I finally got a referral after several dead ends.  I didn't post on here, looking forward to coming back with my official 'autistic' badge. Of course I kept reminding myself I might not get it, might even get told I was imagining it all.

    I had 4 hour long appointments in all: an initial screening (apparently mostly to make sure I wanted to be diagnosed!). I also had forms for my family to fill for that: got the courage to ask several family members and did one myself. Then an appointment with an expert, then with her again for ADOS.  Yes, I got one... Finally a few days ago I had my feedback session to get my diagnosis.  A couple of weeks after the ADOS, so it hadn't been a pleasant wait!  On the morning I could hardly eat, which is not normal for me.

    So finally, sitting in the chair, and I hear the words 'I don't think you are autistic'.  I was just so shocked.  I just closed my eyes and cried.  I'd tried to prepare myself that might be the outcome, but when it came I basically went into shutdown, which is very rare for me.  Just closed my eyes and withdrew. Anyway after much talking (next appointment cancelled, so I think we were actually there for getting on for 2 hours) I eventually realised it wasn't quite so bad as I thought.  She didn't think I was imagining it all: my official letter when I get it is going to say something like I have autistic traits but don't fit the diagnostic criteria.  In her definition you are only on the autistic spectrum if you are diagnosable.  Autistic traits are not enough for that 'label'. So she wasn't saying I was imagining my difficulties with organising, meltdowns and sensory sensitivities... just I was too socially skilled and imaginative to be diagnosed autistic.  Not so far from my self diagnosis really... and nice to know in a way that I am reasonably skilled socially, I was begining to wonder if I had that wrong and was worse than I thought!

    So I can't really say the diagnosis is 'wrong'.  I think maybe a different diagnostician might have made a different choice of what side of the line to put me?  But I can't face putting myself through fighting for a second opinion when it's close.  If she had said I was imagining it all... but she didn't deny my traits and problems.  Maybe one day when I have the money I'll go privately to the best expert I can find for diagnosing women.  But for now I have to live with the result I've got.

    So here I am, without an official 'autistic' badge. I'm hoping that people can still accept my thoughts and opinions from my experience as someone with 'autistic traits'.  I am well aware that I'm better off than many on here with having better social skills.  But I'm still hoping there's still a place for me here.  I find this community is useful to me, and hope I can be useful to others here.  So hopefully I'm still welcome?

    (PS: she did offer me counselling, since I was so upset.  So I'm being referred for CBT, as I've found it more useful for me in the past than straight counselling).

Reply

  • Hi all.  Not posted for quite a while, and I was coming on to post my own post, but this seems the right place.

    I used to post a lot last year, but as I wasn't diagnosed I always felt I might be 'a fake' in some ways giving my experience or opinions based on my experience.  Still I found lots that I related to here. And considering myself as autistic helped me deal better with problems I have such as meltdowns. And I felt that maybe having an official diagnosis would help with problems I have in real life: a few messes with finances and paperwork which people might possibly be more understanding about. I always knew that I had less problems than many on here with communication and social skills, but maybe that's because I'm female, had a life that has taught me strategies etc etc.

    So I was delighted when I finally got a referral after several dead ends.  I didn't post on here, looking forward to coming back with my official 'autistic' badge. Of course I kept reminding myself I might not get it, might even get told I was imagining it all.

    I had 4 hour long appointments in all: an initial screening (apparently mostly to make sure I wanted to be diagnosed!). I also had forms for my family to fill for that: got the courage to ask several family members and did one myself. Then an appointment with an expert, then with her again for ADOS.  Yes, I got one... Finally a few days ago I had my feedback session to get my diagnosis.  A couple of weeks after the ADOS, so it hadn't been a pleasant wait!  On the morning I could hardly eat, which is not normal for me.

    So finally, sitting in the chair, and I hear the words 'I don't think you are autistic'.  I was just so shocked.  I just closed my eyes and cried.  I'd tried to prepare myself that might be the outcome, but when it came I basically went into shutdown, which is very rare for me.  Just closed my eyes and withdrew. Anyway after much talking (next appointment cancelled, so I think we were actually there for getting on for 2 hours) I eventually realised it wasn't quite so bad as I thought.  She didn't think I was imagining it all: my official letter when I get it is going to say something like I have autistic traits but don't fit the diagnostic criteria.  In her definition you are only on the autistic spectrum if you are diagnosable.  Autistic traits are not enough for that 'label'. So she wasn't saying I was imagining my difficulties with organising, meltdowns and sensory sensitivities... just I was too socially skilled and imaginative to be diagnosed autistic.  Not so far from my self diagnosis really... and nice to know in a way that I am reasonably skilled socially, I was begining to wonder if I had that wrong and was worse than I thought!

    So I can't really say the diagnosis is 'wrong'.  I think maybe a different diagnostician might have made a different choice of what side of the line to put me?  But I can't face putting myself through fighting for a second opinion when it's close.  If she had said I was imagining it all... but she didn't deny my traits and problems.  Maybe one day when I have the money I'll go privately to the best expert I can find for diagnosing women.  But for now I have to live with the result I've got.

    So here I am, without an official 'autistic' badge. I'm hoping that people can still accept my thoughts and opinions from my experience as someone with 'autistic traits'.  I am well aware that I'm better off than many on here with having better social skills.  But I'm still hoping there's still a place for me here.  I find this community is useful to me, and hope I can be useful to others here.  So hopefully I'm still welcome?

    (PS: she did offer me counselling, since I was so upset.  So I'm being referred for CBT, as I've found it more useful for me in the past than straight counselling).

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