Awaiting Diagnosis, Very Anxious

For some background, I am a woman in her late twenties. I was diagnosed with Generalised Anxiety Disorder and Sensory Processing Disorder as a child but never even assessed for autism at all, instead I was misdiagnosed as a toddler with early onset Bipolar and psychosis which was quickly ruled out by the people who diagnosed it in the first place. I had some brief Occupational Therapy for the sensory problems but my parents were told quickly that I was 'too old' for it to be effective, and was never given any further help for it.

I've spent my whole life being bounced back and forth from different medications for anxiety, counselling and CBT, none of which has helped long-term. I had more friends when I was younger and doing activities like a drama club which helped me learn how to 'act normal', like making eye contact and smiling which does not come naturally to me. I was bullied regularly in schools and work throughout my life and have been unable to work for several years now due to the only 'explanations' I have for my issues, namely anxiety and depression.

After discovering a year ago through online research that the autistic spectrum is linked to sensory difficulties, as well as my intense difficulties with socialising and need for routines/order and obsessive interests, I asked my GP for a referral and she immediately agreed. Another GP also agreed when we discussed it with her. I had the initial assessment 'screening clinic' with the local adult autism service who put me through for a full assessment. They did a brief telephone interview with my mother about my childhood history.

Yesterday I had that 'full assessment', or at least the first part. It was a horrible experience because after a year of research (not just Googling, I read 5 different books by or about autism including works by Tony Attwood, Donna Williams and others- and the books are filled with sticky-tab bookmarks on pages that accurately described my issues) I can't help but feel that autism is the only condition that accurately explains all of my difficulties. My GP and my family also believe this to be the case.

My assessment involved seeing one woman I'd already met at the screening clinic, and two different psychologists. I was given the flying-toad (or frog) picture book activity, along with filling in puzzle pieces on a template paper (she didn't give me enough pieces, and before I even started trying I told her 'well, obviously there aren't enough pieces for me to do this', so she gave me the rest of them without issue), I had to look at a children's picture cartoon that showed people on an island and doing different activities, and the activity where you have to tell a story with 5 random objects (I really struggled with this so asked if I could tell a story I already knew, they said yes so I tried to tell the intro story from one of my favorite video games using random objects). I then tried to describe what I liked so much about that game and quickly became aware I was talking very quickly and excitedly so trailed off and felt embarrassed.

The rest of it was talking and talking. I had already sent them two written documents, one a 20-page history of my childhood and difficulties and some relationships, and a 7 page follow-up document sent right before the assessment that explained my more detailed understanding of autism after researching it so much and why I felt a diagnosis was important to me, but it seemed like they hadn't read any of it and wanted me to describe it all 'off the top of my head'. They also asked if I would be suicidal if not given a diagnosis, and I tried to be honest by saying that it would probably make me very depressed. They then had me do more tests of watching short videos of two people interacting oddly, and asked me each time what the people meant by their actions and words. Mostly I answered 'I don't know the context of the situation based on that short video', so I just made multiple guesses of what the case may be.

They then sat me down (I had my mother accompany me for this last part) and explained they were concerned that if I didn't get a diagnosis they might have to 'take action' to keep me safe. They seemed to be saying if I was at risk of suicide (I have a history of depression and ideation because of all my difficulties) they might not give me an answer of no or yes, because it's not 'the appropriate time' to do so. My mother and I tried to explain that not getting a diagnosis would certainly upset me, but because I cannot live alone (live with family) it's not really an issue of 'keeping me safe' because there's not much way for me to try and kill myself even if  wanted to.

The psychologists kept saying there was no definite answer yet and they needed to meet the whole team and read through all of the 'complex information' I'd given them in writing (I didn't think it was complex, especially for people who are medical specialists). They gave me another appointment for 2 weeks' time, they also asked me very quickly if 'there's anything else you wanted to discuss', but I struggle deciding what to say in pressured situations like that so just said it was probably all in my written documents. Half an hour later at home, I was thinking of stacks of things we hadn't talked about (for example, they asked how much time I spend on my special interests and whether or not I've ever missed commitments/appointments because of this, I tried to explain that with certain video games I have played hundreds of hours over the years and when I'm not playing them I do things like scripting out all the dialogue from the games and writing fanfiction for them, it's not just the amount of time spent playing them). Amongst other things I also wanted to clarify the suicide risk idea, because it's taken over a year for me to even get to an NHS assessment (I cannot afford private healthcare) and for them to just tell me they can't give me an answer because the answer might depress me seems illogical. Also I did ask about the Empathy Quotient and Autistic Spectrum Quotient questionnaires, which I'd filled out online, printed and brought in to discuss the answers with them, but one of the women just said they didn't use those questionnaires in this part of the country so it wasn't relevant.

I'm sorry for this post being so lengthy. But I'm anxious I will not get any closure or resolution in the form of a positive diagnosis, I worry the assessment might not have been carried out properly or that the specialists are not suitable or following guidelines correctly. I worry their 'results' may not justify their decision, or they will send me back to a useless series of mental health treatments which I've already had over and over. I would like a diagnosis for 2 reasons, as confirmation of my difficulties and also to access at least the possibility of autism-related support for working again one day or making new friends/relationships, which I would like to do but just cannot in the current situation because it's too overwhelming. From the amount of time they spent talking about suicide risk assessment in case of a 'no',  it seems to me likely they won't be giving a diagnosis.

I've sent them an email asking if I'll be able to discuss what I thought to talk about after the fact at the next appointment, or if it'll just be a 'yes or no' appointment, but I don't hold out much hope as they haven't been very responsive to email contact in the past.

Can anyone offer an opinion on whether or not the assessment process so far described seems suitable, and what kind of options I have for getting a second opinion if they don't justify their findings?

Parents
  • I have seen this post is 2 years old, but I am so sorry for what you have been through. I really hope they gave you a straight answer and that you haven't been waiting for too long! I know they mean well, but the uncertainty can be the worst thing x

Reply
  • I have seen this post is 2 years old, but I am so sorry for what you have been through. I really hope they gave you a straight answer and that you haven't been waiting for too long! I know they mean well, but the uncertainty can be the worst thing x

Children
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