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,
    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 :)

Reply
  • 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 :)

Children
  • 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.