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.
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 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!
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.
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!