Published on 12, July, 2020
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.
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 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.