Autism Diagnosis - Second Opinion? Please help.

Hello everyone. 

Okay so, I'm going to probably be a rambling mess here, but please bear with me. 

A few years ago, I really discovered for the first time what autism was. I fell down a wee bit of a rabbit hole, and 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. I have always felt like an 'other' in some way or another, and it explained so much of why for me. I grew up in an emotionally abusive household with constant turmoil and tension, and I struggled throughout school despite having good grades. I was diagnosed with acute anxiety disorder at the age of about 15, and I don't doubt that I have that regardless of the autism side of it. 

So, I decided I wanted a diagnosis. To this day, it's a struggle to try and explain to my family why it's so important to me - I mean, how many ways can you say that it validates my lived experiences and allows others to understand me better, before feeling like you sound crazy yourself, you know? Anyway, I managed to be assessed in April 2021, only to be told I wasn't autistic after all. I was devastated because I felt that the two women conducting the meeting didn't understand and wrote me off over the smallest of things - even in the written report, they wrote things which didn't even match up to what I had told them. It felt like I wasn't stereotypically autistic enough for them, as someone who hit her developmental milestones and doesn't have huge meltdowns (I have burnout, actually). I was so upset and disheartened, and that's why until now I've tried to forget about it, because at this point it feels like no one believes me.

Basically, I disclosed at the beginning of the meeting that I had looked up what this test involves, because I was getting incredibly stressed over what sort of environment it was going to be, how long it would take, that sort of thing. I felt vulnerable and struggled particularly on that day to make eye contact, which I was hyper aware of, because it felt already like they didn't believe me and my mother (who was in the room with us) didn't really, either. I had to disclose things, embarrassing or painful things for me, because even though I'd gloss over them normally I had to be as honest as possible about it, which made me even more anxious. I mention this because they pointed out, in the room and on the report, that I made more frequent eye contact with my mother than with them - I don't know if I'm stupid, but isn't that sort of thing a given?

According to these assessors, I scored borderline on the ADOS assessment for the autism spectrum condition threshold.

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. They used my interest in Bratz as a child as an example of being normal, so I'll elaborate. I collected over 100 dolls/accessories. I know all of their names and collections even now, as well as what characters they were made into/used for. I obsessively wrote profiles for each character multiple times in multiple files/notebooks. I spent probably thousands of hours playing with them with a single friend (whom I was incredibly attached to over all others) and created a whole universe with them. I was fascinated by the functions of cars (like the radio/aux cord), more than using them to act as vehicles for the dolls. To this day, I can recount over 90 characters and identify a doll's collection by looking at them. I have made lists saved on my computer relating to them. They claim I did not show repetitive patterns of behaviour, interests of activities in the assessment but this just isn't true. 

They blamed any sort of traits I have on severe anxiety and childhood trauma. They acknowledged that I have social difficulties, and struggle describing emotions, but because I'm good at using natural-appearing gestures when speaking that also counts against me. I feel like because I do have anxiety and I've gotten so used to having to adapt how I behave and talk depending on the situation I'm in and who's there, they've written it off as all being a trauma response. They even tried to say that because I spend much of my time indoors (for a time I really struggled to even go anywhere because it was anxiety-inducing and exhausting), my special interests are only natural to be as strong as they are. 

I know it's been almost 2 years, but as I say I was so put off by that whole experience that it took me a long time to come to terms with it. I want to know what to do. Is it worth getting a second opinion? Even back when I did the online quizzes years ago, it told me I had a high likelihood of autism. I took 3 different ones today from the Embrace Autism website and I got 40 on the AQ, 163 total on the RAADS-R and on the RDOS Aspie quiz I had 152 (Aspie) and 64 (Neurotypical). Now I'm thinking about it, I can't stop thinking about it, to the point where it's physically discomforting. I was going to take these results to my GP and discuss what to do from there, even with all the time having passed (though, with the waiting list I'd maybe have been on if I appealed right away, I suppose it isn't really relevant). Is it better to go private, instead?

It's a lot of questions and information overload, and for that I'm really sorry. I feel so small and unheard, and it's incredibly distressing to me. I know even if I go for another test, I may not be diagnosed with it even then. But, for all of you kind folk who have dealt with this or who are yourselves autistic, I was hoping desperately that you'd understand and have some advice.

Thank you all so much in advance, it means a lot to me.

Parents
  • 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.

Reply
  • 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.

Children
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