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Just supposedly had a diagnosis... but I'm still confused as to whether I'm autistic or not!!

Ash Ington

So today I did my third and final assessment to establish whether or not I have ASD. This was at South London and Maudsley by the way, and I was originally told to get an autism assessment by two different psychologists who had treated me for mental health issues. I am 29 years old.

At the end of the assessment, the doctor started talking to me as if I didn't have autism. She told me that there wasn't enough information from my childhood from my informant (my mum)/that the info she gave didn't meet the threshold, but that my behavioural assessment did exceed the overall threshold, however much more in some bits than others etc.

She said that she thinks my problems are probably more related to ADHD, and is going to get me referred for another assessment for that (another year to wait!). She also said she was surprised that other healthcare professionals had thought my issues were ASD rather than ADHD. I mean, I told her that my previous psychologist had said she'd be shocked if it turned out that I wasn't autistic, and the doctor said "oh dear...". All of the signs that this doctor was making was pointing towards there being no autism diagnosis. So I was thinking, okay, fair enough- I'm not autistic. But then she said was making a diagnosis (and she specifically said "I am making a diagnosis") of 'Pervasive Development Disorder'. I looked this up and it seems to just be a generic umbrella term for autism categories, so I assume she meant 'Pervasive Development Disorder- Not Otherwise Specified'. But then I looked that up and it seems that the category doesn't even exist anymore, and now just comes under 'ASD'!

So I'm obviously very confused, because she talked like I didn't have ASD, told me I needed to be assessed for ADHD, but then made a diagnosis of a no longer existing ASD category!! This semi-diagnosis is incredibly confusing and anxiety inducing and it's so annoying that I now have to wait three weeks for my report to come through.

Has this sort of thing happened to anyone else? Can anyone read between the lines and tell me what this doctor actually means?!

  • in reply to Ash Ington

    Thanks for the reply. I was psyching myself up to get in contact with them when on Saturday morning a letter arrived telling me I'm now officially on their waiting list and starting the process of arranging a telephone interview with my 'informant'. This has made me feel better as I now have that 'official' bit of headed paper with a few concrete details. I really hope everything turns out for the best for you and you get a straightforward answer you can be satisfied with.

  • I'm just so stressed out and depressed about this whole thing. I feel like perhaps the actual diagnosis will be Social (Pragmatic) Communication Disorder. It's upsetting because 'autism' is something that people understand, and people will be more accepting of my sometimes strange behaviour and mistakes I've made in the past. But people don't accept Social (Pragmatic) Communication Disorder and don't think that ADHD is even real.

  • in reply to Kras83

    Not cheeky at all, and sorry for the late reply. I would advise to ring SLAM, ask to speak to the Autism team, and ask them where your referral is. All three appointments of mine were made by me ringing up and chasing it. The admin team are so lovely so be kind to them- the system is a mess but it's not their fault at all.

  • This sounds very confusing! The NAS has a helpline - it might be worth contacting them for advice.

  • Hi, I'm sorry to hear that you have been left feeling unsure. I can't speak from experience because I am still at the waiting for an appointment stage but from everything I have read I would assume that at some point you should have something in writing which should hopefully help.

    I hope I'm not being cheeky here but since I read that your experience is at the same place that I have been told I was referred to would you mind me asking how much contact they had with you between your referral and your appointments? I was referred in January but have had no contact from South London and Maudsley and the only way I know they have received my referral was that my gp chased it up and was assured they had. Was this similar to your experience? Sorry again for subverting your thread but you can hopefully understand my desire for info.

    I hope you get a clear answer soon!