[Start Video Transcription:
Clip 1 is of someone responding to a comment that reads “Exactly!!!! (Repeated exclamation marks) My sister is convinced she’s autistic and even if the psychiatrist doesn’t agree with that, she said that the diagnosis were misogynistic”.
The person says, “It’s very strange that all the girls that have “autism” (in air quotes) on here have like, extremely high-functioning Aspergers but it’s barely detectable.”
Clip 2: “Hi I’m Bree, and this is my DSM (holding up a copy of the DSM-5) and I’m diagnosed with autism spectrum disorder and I’m going to tell you everything wrong with what you just said. But first, I have to say I’m pretty intrigued by you because I think that you’re one of those people who speaks really articulately but without any substance or knowledge and you get away with giving hot takes like this on the Internet because people just don’t know the difference between someone who speaks well and someone who speaks intelligently. But I digress. Your use of functioning labels and the term “Aspergers” lets me know that you have never been within spitting distance of this book, let alone read and comprehended the current diagnostic criteria for autism spectrum disorder. And if you’re going to give takes like this on the Internet, you should probably spend about 10 seconds Googling so that you can make sure that your terminology isn’t outdated by about a decade.
First and foremost, yes. The diagnostic criteria for autism is misogynistic in the sense that it was based on boys. In fact, the literal Nazi that you are naming – Hans Asperger – believed that it only occurred in boys. We have a wealth of research now to let us know that isn’t true. The problem is, research is continuous and always evolving, and it takes a really long time for research to be reflected in the diagnostic criteria and for psychiatrists and psychologists to update their own education and begin to apply the knowledge to their autism assessments.
The DSM-5 text revision, which just came out at the end of 2022, is the first version of the DSM to contain a section about sex and gender related diagnostic issues, which clearly states (here, an underlined section of the DSM-5 is shown) “Girls without intellectual impairments or language delays may go unrecognized, perhaps because of subtler manifestation of social and communication difficulties. In comparison with males with autism spectrum disorder, females may have better reciprocal conversation, and be more likely to share interests, to integrate verbal and nonverbal behaviour, and to modify their behaviour by situation despite having similar social understanding difficulties as males.” So, this “barely detectable” (in air quotes) autism that you’re referring to is clearly reflected in the DSM as something called masking, and should be taken into consideration during diagnostic evaluation. Due to the fact that this was just added to the DSM, we’re going to have to catch up a little bit, meaning that a lot of teenage girls and adult women are going to be diagnosed with autism even though they went undetected as a child.
And a lot of us didn’t go undetected and just don’t know it. I ordered my medical records and found out that my paediatrician had made a note that he suspected I was autistic, and my mental health records from an agency between the ages of 11 and 19 had also documented multiple times that I was displaying traits of autism, but nobody at the agency was qualified to diagnose me, so I never got the diagnosis. I am lucky that when I was diagnosed at the age of 20, my evaluator was competent enough to know that my social deficit was impacted by masking, even before this version of the DSM was released. But not all psychiatrists and psychologists are that competent, and they also don’t all specialise in autism diagnosis. If you go see your regular psychiatrist who was treating you for something like bipolar disorder or OCD, and you tell them that you suspect you might actually be autistic instead, they probably are not qualified to evaluate you for autism, which is why you often leave without the diagnosis.
Being unable to find a qualified, professional who can evaluate you accurately does not mean that you are not autistic.
Now that we’ve talked about professional diagnosis, let’s talk about self-diagnosis, which is recognised and supported by the autistic community and requires a whole lot more than just going on the internet and seeing videos of people and saying “Hey, I relate to that! I must be autistic.” People who are self-diagnosed get a copy of the diagnostic criteria and they compile somewhat of a binder that includes all of the autistic traits that they do have, and other behaviours. They interview family members to make sure that the onset was at the correct developmental stage. They tend to take tests like autism screening questionnaires, or the AQ, or the RAADS-R, to see if they are scoring within the range that autistic people score in, and most importantly, most of them seek out peer approval. Meaning they go to a person who is professionally diagnosed with autism spectrum disorder, provide this binder to them, and say “What do you think?” Although there’s no research on this yet, I have been told by several professionals who evaluate for autism, that almost everybody who comes in self-diagnosed, leaves with a professional diagnosis.
Your theory that people with anxiety and ADHD are just using the autism label or are just getting diagnosed with autism because they feel like anxiety and ADHD are not being taken seriously anymore is not only absurd, but tells me that you know nothing about autism, because there is very little overlap between autism spectrum disorder, ADHD, and anxiety in terms of diagnostic criteria. There is a high rate of comorbidity though. Autistic people experience a very specific kind of anxiety, and a lot of autistic people have ADHD, so it’s not unusual for a person diagnosed with anxiety and diagnosed with ADHD to then be diagnosed with autism spectrum disorder. That’s actually quite a normal progression of things.
Another thing that has caused a delay in identifying autistic girls is that autism wasn’t added to the DSM until the DSM-3, which was published in 1980. Now, autism has a genetic link, and it is pretty common if one person in your family is autistic, that there are other autistic people in your family as well. But my parents were born in the 60’s, and I was born in the 90’s, so my parents would not have been diagnosed autistic as children if either of them were, because it wasn’t added to the DSM until they were adults. For most of my generation, we didn’t have a documented genetic link, whereas for the generations that come after me as the first person in my family to be diagnosed autistic, they will have a documented, identifiable link to autism which will then make diagnosis easier for them if they are exhibiting traits of autism. Like, our awareness of autism is so new, that we’re still catching up from that, let alone catching up to additional research and changes to the diagnostic criteria.
Now, let’s talk about your follow-up video where you said that teens want to be autistic so they have a sense of community, but I can assure you as an autistic person, that community in my real everyday life is very limited. And I know what you’re thinking, “well, they want to have a community on the internet. But having community on the internet is no match for having community in person. And I know that because I came out as queer at the age of 12, having had zero community in person but I was a Tumblr kid. So I had a community on the internet, and I guarantee you it never once made me feel more loved, supported, or like I had a legitimate community to rely on. So, I’m not sure why anybody would intentionally other themselves in real life in order to have “community” on the internet.
What I think that you don’t understand and maybe your take is coming from being chronically online, but autism isn’t “trendy” in person. There is so much stigma attached to the diagnosis, and being openly autistic affects your education, your relationships, it affects everything and it others you.
Diagnosis is not an exact science, and there probably is a small number of people, both professionally diagnosed and self-diagnosed, that are not actually autistic. However, misdiagnosis, more frequently happens the other way around, where people, specifically women, tend to be diagnosed with things like bipolar disorder, BPD, OCD, anxiety, or ADHD, when in reality they’re just autistic.
Diagnosis is a privilege, and there are so many barriers to diagnosis that include things like race, sex, class etc. I’m sorry that we don’t present “autistic” enough for you on the internet, but I would love to see in a room with me while I have a meltdown and then try to tell me that my autism is “undetectable”.
If you’re wondering why you tend to see only low support need autistic people on this app, it’s because this app is most accessible to us, and the platform tends to push out our content more than the content of other people in the autistic community, which is really a shame because we want you to hear all of the voices of the community.
I swear, from now on, people that want to talk about autism like this on the internet, better be able to tell me off the top of their head what the diagnostic code for autism spectrum disorder is, and what changes were made to the diagnostic criteria for the DSM-5-TR, because if you cant do that, you just shouldn’t fucking be speaking on it.
I have heard a lot of uneducated takes about autism on the internet, but yours is by far the worst. And you’re doing a lot more harm to the actually autistic community than people who are self-diagnosing, so maybe just be quiet.
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