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?
Although I cannot answer your question about whether a second diagnosis would be any different, I do feel that, from other people's comments, an NHS autism assessment can occasionally be rather like a PIP assessment.
I have read on several occasions that someone has not received an autism diagnosis on the basis that they present as 'not having any difficulty' in their everyday life.
My problem with this attitude is that, when we are faced with a constant problem we have to put up with it and develop a way in which to cope. People can get used to many things in their life - poverty, homelessness, hunger - but that does not mean that these are not a problem for them. It just means that they are used to it and do not know any different. And the same it is with autism. We get used to it and know no different. We get used to people making fun of us, to doors being closed in our faces, to avoiding crowds and sensory stimuli, to misunderstanding what people say, to taking things literally. But that does not mean we don't have a problem with these things.
By all means go for a private diagnosis if you think it would help and that you were misdiagnosed and you can afford the cost. In around a month you could have your answer. But be prepared for the questions asked. I don't mean to tell fibs, but I feel a problem I have as an autistic person is that there are some things I don't want to admit to regarding difficulties I have. And that coupled with a misunderstanding of the questions asked could be the difference between a positive diagnosis and a negative one. I would suggest you make notes about how you are affected in any way but especially the so called Triad of Impairments and learn it thoroughly. Take the notes into the assessment and make sure you include anything and everything you want to bring up in the notes so you don't forget anything at all. If like me you are easily sidetracked and go off on tangents this will ensure that everything is covered.
A good psychologist/psychiatrist should be able to phrase questions in the right way and 'fish' for a proper response and interpret this in the correct way. But sadly I feel this does not always happen.
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.
I agree with you about having an issue with the idea of only being autistic if it causes significant difficulties.
1. How can you measure the impact autism has on someone? On the outside I don't think my autism does show much difficulty. (Unless you were to see how bad I am at housework). But inside my head it is slowly day by day chipping away at my mental health and self esteem. The tiredness it causes just to get through a "normal day". I was so fortunate to have an assessor that understood all this. There is so much proof of masking these days then you can't measure just by what is in front of you. You have to delve a little deeper.
2. They have scientific proof that the autistic brain is different to the NT brain so you are either autistic or you are not. So this concept of how much difficulty you have or at least show is silly. If you show enough traits of autism whether it causes you significant difficulty or not then likely you are autistic. God forbid there could be happy autistic people out there.
Sorry to read that you had such a negative experience Ramona, it sounds like it'd definitely be beneficial to seek a second opinion. I took lots of notes to mine (and then emailed more over) as I felt like I couldn't put things across properly in person, I was able to discuss things in more depth in my notes so that may be something to do as others have suggested too. I hope it goes will if you go for it!
Thank you for this, Ruthieroo. What is disappointing about my NHS assessment is that I had done exactly that - I had written a few pages of notes and sent it with my questionnaires. I asked the assessor if he had seen/read it, and he said no.
I have sent the same notes in advance of my private assessment, so hopefully they will be read this time! I will also take some more notes - @Binary suggested doing this for the 4 areas for diagnosis, which is another helpful suggestion.
Thank you for this, Trainspotter.
I think that part of the issue is that the psychologist doing the assessment didn't want to fish. I think the decision had been made before I entered the room, because of my ADOS-4 results. So even when I gave examples I thought were relevant (e.g. I no longer give or receive gifts because I find them so stressful, and almost always blurt out what I really think and offend people) he just said "Lots of people don't give gifts these days" without digging any further.
I will definitely take some notes to the next assessment (the last assessor admitted to not having read the notes I emailed in advance) and will re-familiarise myself with the triad of impairments.
Thanks Binary. I agree with you both on this point. There's more to autism than just surface-level difficulties.
My assessor didn't seem to consider the possibility of masking at all. One of the things that he commented on was my good communication skills. I can't argue with that - my communication skills are pretty good - but it's all the stuff that goes on behind the scenes to get me there that make me think I might be autistic. Every social interaction has a mental flow chart where I try to work out how to communicate with this person in this context - and I usually get it roughly right, but not always. In groups, the flow-chart method doesn't work - it's too complex - which is why my communication in groups is often a lot worse. But I wasn't observed in groups, so this wasn't picked up on.
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.
Very variable diagnostic accurracy. I have 5 bikes!
How important is it to you to have an asperger or autistic diagnosis. You know you have features to run your life bearing that in mind.
Private testing will always come up with more positive diagnoses
Hello NAS51277. 5 is a good number of bikes. I'm jealous!
It is important for me to know if I am autistic, one way or the other. I think a diagnosis would help me in terms of self-acceptance. I'd also feel more able to self-advocate when I need to, and to participate in forums such as this.
I guess I just want to know either way - and because my first assessment was terrible, I didn't feel confident with the answer. Hopefully next time I will.