Published on 12, July, 2020
Hello. I recently had an NHS assessment for autism, which I didn't think went very well. I was diagnosed with "autistic traits" but I am not very confident in the outcome, because there were so many problems with the assessment. For starters, I felt very rushed; I was told it would take up to 2 hours, but the clinician ended the assessment after 90 minutes. The clinician's phone went off a couple of times. I didn't feel that the clinician took things like high IQ, gender, and compensatory strategies into account. He was also very dismissive of points that I made, although it's hard to capture this in writing. For example, he said that bikes couldn't be my 'special interest' because I only have 3 bikes. He also said that there was 'nothing unusual' about having four pairs of identical shoes and wearing these constantly (for sensory and routine reasons) all year round, even in winter when they aren't appropriate.
I was very upset after the assessment, and have booked in for a private diagnosis in order to get a second opinion. It is incredibly expensive, but having waited so many years for my NHS assessment only to feel really unseen and unheard, I feel like I just want to get an answer that I can trust.
My question is: has anyone had a different outcome at their second assessment? And any tips for ensuring my second assessment is more positive than the first?
I've no idea about the outcome for a second assessment but based on what you've said I think you should definitely go for one.
I do not understand the logic of bikes not being a special interest because you only have 3. One of the most common special interests in autism is trains and I'm fairly sure there aren't many autistic people that actually own a train (not including toy ones). Some peoples special interests just involve them finding out lots about them.
I also don't know anyone else that has 4 pairs of identical shoes and I think a lot of people would find this unusual.
It really irritates me when you hear assessment stories like this.
I had a really positive private assessment. The assessor was really tuned in to autism in females and how I've learnt to act in certain ways rather than doing it intuitively. He commented himself that I use my intelligence to cover up my autism.
The 4 areas for a diagnosis are: sensory, communication, social and rigidity of thought. I would write a list under each of these headings in preparation for your second assessment. If you haven't already taken the aq test then it may also be worth taking that and printing out the result if you score highly.
I hope you have more luck with another assessor.
Thank you for this reply. It's very reassuring.
I thought the bike example was pretty weird and dismissive on the assessor's part. As it happens, I would love to have more bikes to tinker on - but I live in a tiny flat, and don't have space! Re: the shoes - he said that was normal 'for women', which I thought was perhaps a little sexist. There were many more similar examples where I felt what I was saying was dismissed without consideration or exploration.
Your experience of your assessment sounds much more like what I was hoping for, which is reassuring. I do feel that in my case, gender and intelligence meant that tools like the ADOS-4 aren't really suitable. Before booking my private assessment, I asked the potential assessors a couple of questions about their experiences diagnosing women with high IQs - the person I booked with seemed to 'get it' and was signposted me to Tania Marshall's "Aspienwomen" screening list - which I think is a good sign.
The private assessor asked me to complete the AQ and EQ tests and email them in advance, which I have done. My scores are both well into the diagnostic cut-off so again, I hope that will be taken into consideration.
I will definitely bring more notes into the next assessment. As I have mentioned, I did email pages of notes to my last assessor - but he admitted having not read them. I tried to go through some of the points as I had the notes on my phone, but because the assessment was cut short so the assessor could go to his next meeting, I didn't have chance to discuss them properly.