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.
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.
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.