Autism Diagnosis - Second Opinion? Please help.

Hi. thanks for posting, although it kinda makes me worried what is going to happen in my assessment.

I did the AQ50 a few years back and got a 47 and again last year and got a 46.

While I am convinced I am autistic, I am .... not sure how to say this without sounding like a d1ck ... fairly high IQ. I am very good as masking, particularly in a formal setting like an interview.  I had a previous attempt at getting assessed and didn't get past the first hurdle as the person doing the interview did a 'qualitative assessment', and did not see though the mask.

I had hoped that the process is rigorous enough and used parameters that were sufficiently well categorized that a proper scoring system could be utilized, as a formal diagnosis should be, but maybe I am going to be faced with the same problem.

I don't socialise, I have not had a romantic partner in many years ... I just can't maintain a relationship with anyone.  Now that I know about the autism thing, I am having to revisit much of what I thought about myself - I am not 'simply broken'. I has unraveled much of me ... and I need to try and piece things together again.

If the result is a negative, I think I have learned enough to know that that would be an incorrect diagnosis, but I can see how it would be gutting to have these issues and, as the OP said, feel so unheard.

I am so happy you got the help you needed. I am sorry that happened to you. I was diagnosed when I was in my teens. I was diagnosed with Asperger's syndrome. I was bullied and I am still. I am 22, so it has been hard for me to make friends. I am new here.

Thank you for your kind welcome, and my apologies for such a late response. You see, I had spoken to my GP days after posting this, and I was so overwhelmed by it all that I shut away from the topic for a few months (as evident here).

It seems that the doctor I spoke to couldn't quite grasp why it was so important to me to be diagnosed, though he listened as I tried to explain. Although I was distressed by it all, he couldn't do anything to help, because there's only one Autism team on the NHS in my area and if they said I'm not then there's no interest in them challenging it. I would have to go private.

Reading your words about how it was valid to self-identify here means a lot to me. I felt that if I don't have an official diagnosis, or worse was told I wasn't contrary to so many things, I can't possibly self-identify. It's comforting to know that not only am I believed, but I have a space to identify as what I feel is true to me. It is far from something I'd ever take lightly.

Many thanks for the links and also for sharing your experiences with me. I feel much less alone now, and it is a true privilege to get to know people who are kindred spirits. 

Welcome to the community. I am sorry to hear that your assessment experience was so distressing and dismissive.

Moondust said:

found the videos from Tony Attwood particularly thought provoking. It was as though I was truly being described for the first time as who I have always known myself to be

It was coming across a book by Tony Atwood that led to my own realisation that I was autistic. Reading those pages described me so accurately that it was a complete life changing revelation and it felt like the book had been written about me specifically.

Moondust said:

They blamed any sort of traits I have on severe anxiety and childhood trauma.

I had that blinkered attitude from my GP when I first visited to request a referral. It took me several years to pluck up the courage to go back and finally get the referral, then several more years on the waiting list.

When I finally had my assessment I was questioned a lot about childhood trauma and it almost seemed like an interrogation. Like you I was so anxious about it and I really did not know if I would get the diagnosis, or if they would have the same attitude as my GP. Thankfully I did receive the diagnosis and it was such a relief.

The NHS diagnostic process for adults seems disjointed and flawed, producing potentially different diagnostic results in different areas and depending on who is doing the assessment. It is such a stressful process to go through and then to have the outcome you had must have been so difficult.

There was an interesting discussion recently about a potentially highly accurate autism diagnosis using neuroimaging. That would certainly be less stressful and possibly more effective than the current system.

https://community.autism.org.uk/f/miscellaneous-and-chat/30155/over-diagnosis-of-autism-in-children-and-young-people

Moondust said:

I have no doubt that I have an anxiety disorder, nor that I was traumatised from childhood experiences, but they made it seem as though these things cannot co-exist with autism.

Such ignorance from so called professionals is shocking. According to this NAS website, anxiety is experienced by more than 90% of autistic adults and around half fall into the severe anxiety category based on GAD diagnostic criteria.  

https://www.autism.org.uk/advice-and-guidance/topics/mental-health/anxiety

I received a GAD diagnosis long before my autism diagnosis. The presence of severe anxiety should be seen as a strong indicator of autism. It helps to explain why previous treatments and therapies for anxiety have failed. Unfortunately having an autism diagnosis doesn't seem to open any doors to autism specific therapy.

Good luck. I hope you manage to get a second opinion. If you decide to self identify that's equally valid here.

Oh really? I didn't know a GP could even do that. I'm glad you got your diagnosis at last, regardless of how long it ended up taking to get there. I'll definitely look them up, thank you so much! 

Indeed, I have had instances in the past too, where people have commented that I could be autistic. I used to brush it off before I really stopped and thought about it.

I'm so sorry about your injury! That's a dreadful shame, but I hope you'll be out in the great outdoors again soon. Though, perhaps maybe in less icy and wet weather.

For me, my greatest obsession has always been manga and anime - since I was a child, in fact. I decided I wanted to become a manga artist when I entered high school, and it was a cornerstone of most of my work, regardless of what my teachers thought, because it was that important to me (along with cats, for some reason). Even to this day, I dream of becoming a manga artist, and I have pursued my degree in art to further my path into a career like that.

It is a shame that there's not more support out there for diagnosed individuals, but it's also good that there's places like these to seek out a different sort of support in the form of community. As you say, it's validation and a safety net, and that's really important. 

Sara seems like a very intuitive and kind individual. I will definitely be in touch with her. Thank you again for letting me know about her, and also about yourself!

I went for an autism screening in 2019 locally and was so anxious they wouldn't put me forward for an autism assessment, they just told me I was anxious. After doing lots of research I found out that I was entitled to a 2nd opinion, so my GP obtained out of county funding from my local clinical commissioning group, and I applied to be assessed at the Lorna Wing Centre in Chigwell Essex. I got my diagnosis on 25th January 2022, at the age of 57. It's definitely worth pursuing a 2nd opinion, I recommend you look up the Lorna Wing Centre online. I wish you luck.

Yes lots of autistic individuals function well (or at least appear to function well) in society and have degrees and careers. Before my dietitian (who knows me very well by now) told me that I reminded her a lot of her autistic patients and she recommended I look into autism, I had no idea about what it actually means to be autistic and how it can present in women. Interestingly when I started talking about the possibility of being autistic to some of my friends, it turned out that many of them were also neurodivergent! or in the process of being diagnosed. Several of my autistic friends are doing PhDs and I met many of them at uni so they have degrees too- The way that your assessors view  autistic people seems very outdated and inaccurate. My special interests are not that outlandish either: I am making my special interest (science) into my career and my other main interest is hiking (and all outdoor activities really- though sadly this has been on hold for 3 years now due to injury...). As a child I think one of my special interests was marine biology. And I do think my obsession with Harry Potter may also meet the criteria. It's not actually the topic of the interest that classifies it as a special interest but the intensity with which and way in which it is pursued... So I think it can sometimes be difficult for someone to judge... I also realised only later that a lot of things that I did as a child and thought were very standard/neurotypical/normal are in fact autistic traits- for example I used to like playing with these mini Babyborn toys which essentially were boxes (like a room) with furniture and the little dolls in them- However all I ever did with them was to stack and align the boxes (and their furniture) in different ways to create different buildings... But I never did any role playing with the actual dolls or play with them in another way... 

Yes I am very glad that I realised that I am autistic and whilst the formal diagnosis sadly didn't unlock more support I am still happy I went for it as it was external validation and it is also a good safety net in case I run into issues with work/uni. Talking to Sara for the prediagnostic assessment was particularly positive- She is autistic herself so was also able to explain a few things to me and I felt very understood. That was very positive for me and I actually even reached out to her again after my formal diagnosis for another chat as it had been so helpful to talk to someone that understands. 

It truly was a disheartening experience, especially because as they were women too I sort of had a hope they would understand on a more personal level, that the experience is often different for us than it is for men.

It was so strange to me, as well. In the report, they indicate that if I was autistic, my special interests and fixations would be so intense that it would interfere in my daily life, to the point where I'd be unable to function. It's such an odd implication to make, that for example all autistic people would neglect their pets because they are so disordered that they can't be pulled from a fixation.

I have multiple friends who are autistic, most of them being males and some are more 'traditionally' autistic than others. One of my friends is super into trains and presents as autistic in a slightly more obvious way, but he was in my Uni class getting a degree! Another of my friends is in a college for orchestra music, and you wouldn't even be able to tell she has autism if you didn't know it. We all have had to deal with changes, but we managed as best as we could, yet that doesn't invalidate any of their lived experiences as autistic people. It was honestly just a baffling read, to be honest.

Thank you so much for the recommendation! That is more helpful than you know, especially knowing it has helped you. I am 25 myself, actually! I will have to send them an email, as I'm oftentimes tongue-tied and useless on the phone. It feels so welcoming and warm to be seen by such friendly people like yourself, so thank you!

Hi, I'm so sorry this has happened to you... It's sad that even some of the people that conduct the assessment seem to have such a poor understanding of being autistic... 

"But according to them, I cannot be autistic because of my ability to complete a degree, look after my pets and pick my sister's daughter up from school. I cannot be autistic because my describing of special interests wasn't specific or strange enough."

If that criteria had been used on me I don't think I would have met the diagnostic criteria either.... (and I was formally diagnosed at age 25 a few months go)- I have a degree and so do plenty of autistic people. I used to spend a lot of time around and taking care of horses even as a teenager and I hope that I would be able to take care of a pet. Your special interest sounds very autistic to me... hard to understand why they didn't pick up on that... 

In terms of being diagnosed with an anxiety disorder, that also should not rule it out ! It is in fact extremely common for later diagnosed autistic people (and especially women) to receive countless other mental health and personality disorder diagnoses prior to being diagnosed with autism. In fact on some screening questionnaires they even ask that as an indicator that someone could maybe be autistic! I felt like I was collecting diagnoses before I was diagnosed with ASD: I had diagnoses of various eating disorders, depressions, somatoform disorder, suggestion of OCD and surprisingly I never got a formal diagnosis of anxiety disorder but I am quite convinced I do have that as well... Has it not occurred to them that the pressure of having to exist as an autistic individual in a society designed for neurotypicals (and also not understanding why you are different) could contribute to anxiety? If anything the fact that you were diagnosed with an anxiety disorder should (in my opinion), possibly even support that you could be autistic. 

I am not familiar with the process of asking for a second opinion here in the UK but I think as a start you could definitely make a list of the points you raised in this post for someone to take a look at as they are quite compelling. 

If you are considering going down the private route, I had a very good experience being diagnosed via Sara Heath. It was quite affordable and also a positive experience as well as being fully recognised by the NHS. I was initially abroad and had been recommended to contact Sara for a pre-diagnostic assessment and I just wanted to know for myself. Only later did I realise that once back in the UK I could then see a consultant psychiatrist (who also works for NHS and used to do autism diagnoses for them) that Sara works with who based on her report and his own assessment was able to make the official diagnosis. This is her website- if you are considering going down this route, I would recommend either phoning or emailing Sara for more information: Autonomy Plus - Pre-Diagnostic (shropshireautonomy.co.uk)

I hope you can get your second opinion. It's great that you are part of this community! 

It means a lot to read this, because it's true - when you know, you just know. I'm really sorry that your daughter had this experience too, because it's so soul-crushing. No one seems to understand it - the older generation in particular asks why you'd want that stigma, and what it will change if you did know it. It seemed there was a relief when they said I didn't have it, which made me feel worse to be honest because now who's going to take me seriously - you know?

I made a lot of notes about myself after watching Tony Attwood describe autism in girls, as he seems to be someone held in high esteem with a special interest in that area. I gave them the notes, and they basically dismissed those too - as much of what he said and what I agreed was my own experience could be just normal or in anxiety (which makes me wonder about the parts that weren't just normal/anxiety). It was embarrassing, because I felt I was trying so hard to make my case with someone who knows what he's talking about, and it was kind of put down in a way.

You're right, honestly. It would probably be best to go private, and from reading around the threads here it seems it's a more positive and thorough experience overall. I really, truly appreciate your response. Thank you so much.

It was baffling to me! I described my fixation on Bratz as a child to them exactly as I did here, and they completely dismissed it. I described other special interests too in a similar sort of manner, and they didn't mention any of that - it was just Bratz and that the way I described it was 'normal'... said friend I played with all those years, by the time we were teenagers, told me she couldn't even remember half of their names, let alone anything else! 

I think a second opinion will have to happen for me one day, if I'll ever get peace of mind. We shall see. Thank you for your kind reply.

I just wanted to say firstly that I really am grateful to you for understanding me, and for giving such a thoughtful response. 

I feel like when it came to the assessors, they had so much focus on the 'clinical' side (ticking boxes I guess) - especially in their report - that I feel it really narrowed their view of the broader scope (which is ironic considering they are assessing a spectrum disorder). I have no doubt that I have an anxiety disorder, nor that I was traumatised from childhood experiences, but they made it seem as though these things cannot co-exist with autism.

It feels so reassuring to know I am not alone in these ways of being. I'm incredibly thankful to be welcomed here by you, it means more than anyone could know. Thank you.

I’ve heard this story so many times and it really angers me. My own daughter had the same experience. I would say, if it’s the same part of the country, and same service, don’t bother. They’ll only come back with the same reasoning. They might be professionals, but they are not to be believed in the instance. They are grading you against outdated stereotypical male teen behaviours. You must not give eye contact. You must not have an imagination, you must not smile at a joke because you cannot understand it! You must like trains, planes and engineering. A pop group or flower arranging cannot possibly be a special interest!

Speak to your GP. See if you can choose where to be assessed. Otherwise, think about going private. I cannot stress highly enough that you must find someone who specialises in females, in Autism, or who has a special interest in the subject. That way, you can be sure that the subtle differences and masking and up to date knowledge will be used. 

I can’t see why any NT female should look online and read about autism, and think she has it. The only person to do that is a ND female with autism. When you know, you know! 

It's frustrating that they dismissed your interest in Bratz as normal, the way you're describing it sounds like a classic autistic special interest to me! When I was growing up all my special interests were things that neurotypical girls would be interested in, such as TV shows, bands, movies etc. But that didn't change the fact that I engaged with those interests in an autistic way.

I'm so sorry you had this experience, it sounds like they just didn't listen to you at all and I definitely think it's worth getting a second opinion, especially since it's playing on your mind so much.

Hi,
Thank you for sharing your experience in such detail. Your words really convey the intense, invalidating impact this has had. 

Firstly, I want to say that the assessment process and decision rationale you experienced saddens and worries me. It sounds like your assessors didn't know about masking, and lacked empathetic observational and listening skills. As for explaining much of what you shared with them through trauma - there are strong overlaps, as I'm sure you know from your research, but that's a reason to look deeper, not to dismiss you. Also, it sounds like their approach was far from trauma-informed, which given their response worries me even more than it normally would. 

I'm not an autism assessor, but I am autistic and, like you, have done lots of reading and other learning about it beyond my own lived experience. Much of what you describe deeply resonates with me: the one intense friendship; thinking for extended periods of time about one thing that's very important to you and struggling to process feels of rejection/invalidation; the need to learn and research extensively - because it is a need for many of us, I think... And your special interest soundspy classic to me! It's just that might have looked 'normal' to someone who didn't probe for more detail. Also sounds like your assessors weren't very familiar with how autism can present differently in people ocialised as female.

It sounds like you know deep down that this is you, and again I'm really sorry you've faced this. I've had something similar - luckily not during assessment, but subsequently, and I totally understand the depth of the self-doubt it can cause. I think if you feel it's right for you, you could seek a second opinion. You have nothing to lose. Whatever happens, I'm sure I won't be alone in saying you will always be welcome in this community. 

Good luck on the road - I really hope you find the safety and acceptance you deserve. Here to help if I can :)