Second opinion for autism assessment - has anyone had a different outcome?

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?

  • Hi. I'm so pleased that you got the right diagnosis going private. I had a similar experience  on NHS Autism assessment and I felt totally dismissed and was told I do not meet the diagnostic criteria Autism Spectrum Disorder. I was so upset that the next day I had a big meltdown, took me a week to recover. 

    I'm more determined now to get a second opinion and go private. Thanks for your post it's very encouraging.

  • By the time my NHS diagnosis completes I will probably have sorted my finances sufficiently to pay for a private assessment. Plus a Faberge egg or two at this rate.

    Yeah, this was what happened to me too. I originally didn't have enough money put aside for a private assessment, so I went through the NHS route, but after almost two years of waiting, I had saved more than enough to have a private assessment.

  • Thanks for sharing something positive :-). By the time my NHS diagnosis completes I will probably have sorted my finances sufficiently to pay for a private assessment. Plus a Faberge egg or two at this rate.

  • Congratulations! It's nice to hear that the psychiatrist had read all your notes and questionnaires before the appointment, and that he listened to what you had to tell him. He sounds very supportive! I think quite a few people have had similar experiences with NHS versus private assessment. Private assessments also have a much shorter waiting time to get seen. Thanks for sharing your experience with us. I'm sure others who needed a second opinion could benefit from your experience! 

  • I just wanted to post an update. I had my private assessment, and received a diagnosis of ASD.

    The experience from start to finish was infinitely better. The psychiatrist who assessed me had prepared well, and read all of my notes and questionnaires. He asked the right questions, and I felt much more heard. He didn't dismiss the points that I made, and was really sensitive when talking about difficult subjects.

    It was incredibly expensive to go for the private assessment - but I am really glad that I was able to. I wanted to share my experience in case anyone has an experience similar to mine in the future.

  • Thank you qwerty. I already have my private assessment booked in - it was incredibly expensive, but I was offered an assessment on exactly the day I chose (now a couple of weeks away). I asked my chosen assessor a couple of questions before booking in, and was quickly reassured by their response, which was much more thoughtful and nuanced than the other private assessors I contacted. So I'm hopeful that my experience will be more positive.

    I'm glad you still got your diagnosis even though you didn't share all you could have done about your special interests and obsessions. It sounds like your assessor was really paying attention to the other things you shared.

  • Hi Ramona. I do hope you get a more satisfying assessment when you seek a second opinion. I've heard from people on the forums that in general, in private assessments, the assessors take much more time and effort trying to get to know the person and reading carefully the notes sent in advance, since they are paid to do so. It still could be quite variable, but I hope you'll have a better experience the second time. I would encourage you to browse the forums for previous posts, or ask around to see who had a good experience, and maybe you can try to have your assessment in the same centre.

    I still got the diagnosis, even though I messed up my answers about special interests and obsessions. We probably only talked a couple of minutes on that because of my messed up answers. 

    I agree with what you say about sensory difficulties. And social anxiety wouldn't explain your sensory difficulties. Similar to you, I gave some examples of this in my notes I sent in before the assessment. I think it would be helpful if he had read your notes, or at least spent more time discussing it with you during the assessment.

  • Hello qwerty. Thank you for your reply. It is reassuring to know that people sometimes get different results after a second opinion.

    My sensory difficulties is one of the biggest reasons I think I might be autistic - and it was covered in less than 3 minutes, while the assessor was trying to wrap up the appointment to get to another meeting. So although I tried to cover this, and had given examples in writing, it wasn't really addressed - in part because the assessor admitted he hadn't read the notes I'd sent in advance.

    We did talk much more about socialising difficulties, which I also experience. The assessor attributed this to social anxiety rather than possible autism - which is possible, but I don't think fully explains things either. 

    You mention that you messed up your answers about special interests and obsessions - did it affect the outcome of your assessment?

  • I remember reading on the forums here, that there are people who got different results after a second opinion, so it's definitely possible. Since the assessment is based on behavioural observation, there's definitely as possibility of error, or differences in opinion depending on who does the assessment.

    I actually messed up my answers regarding special interests and obsessions, because I never really thought that much about them (I just thought they were hobbies that many people have, but on later reflection they are more intense than that), so I said I liked lots of stuff, and we kind of ended the topic there. I mainly talked about sensory difficulties and communication/socialising difficulties. Did you also discuss these as well? 

  • Normal for women is a bit of a generalisation but also quite incorrect. Yes there are stereotypes about women having lots of pairs of shoes. I'm sure men have 4 pairs of shoes too. What is not common is for those shoes to be identical.

    I didn't have the ADOS in my assessment.

    Them suggesting Tania Marshall's list definitely sounds promising, it shows an understanding of the difference in autism in men and women.

    Other good thing about a private diagnosis is it will be nice and quick.

  • 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.

  • 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

  • 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.

  • 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, 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.

  • 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.

  • 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.

  • 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.