For once, when I was a child Asperger’s wasn’t even acknowledged yet and there was still the “girls don’t have autism” trope going on. Also, my parents were both addicts and abusive. How things looked on the outside was very important to them though so acting and moving “normally” was literally beaten into me and I learned to mask pretty well at an early age. School was still hell though and I never managed to make any friends.
Fast forward to the time of the internet and I started meeting people who weren’t that different from me. I started to make friends and met my husband.
Even more years later all that trauma from my childhood reared its head and I went through lots of therapy. At some point my therapist suggested getting tested for ADHD and autism. I had to go private because it was pretty much impossible to get diagnosed as an adult otherwise and after three years of waiting I was finally tested for ADHD and diagnosed. The neurologist who diagnosed me suggested getting tested for autism as well and let me take the RAADS-R test and I scored a whopping 212 points. She was, however, not qualified to give me an official diagnosis.
Right now, I’d have to wait for three to six years until getting assessed and it wouldn’t change anything for me. I don’t need accommodations at work because I’m a stay at home wife and there are no other upsides to an official stamp. I simply use workbooks and other information to find ways to make life easier for me.
I voted as “self-diagnosed” – but that’s really an inadequate description.
I’m an adult with multiple autistic kids who have themselves each been professionally diagnosed… and I share an overwhelming percentage of my personality and characteristics with them. But I’m clearly in the “high-functioning” category, and have managed to reach a certain level of stability and success in my own life; so even ignoring the obvious monetary cost of getting a professional eval, at this point there just isn’t much that such a diagnosis would do for me… whereas my kids benefit by having that official piece of paper in their school records; it provides concrete evidence to justify the requests for accommodations which we’ve submitted on each of their Individualized Education Programs (IEP).
Which is to say, I believe that there are certainly good reasons to go to a professional – but there are also circumstances which can significantly mitigate those good reasons.
The fact that there’s no “No - I don’t identify as autistic” means you’re going to get a lot of extra noise in the “Unsure” bucket, plus a lot of people who just see “No” and check that.
I’m autism diagnosed as an adult, but as the years pass I wonder if that’s really the issue or if it’s more likely to be ADHD.
There seems to be many overlapping features and mine are around poor social skills, feelings of being overwhelmed when plans change and long spells if decompression needed after doing almost anything.
I have high levels of empathy and have been a people leader for many years (highly rated) and I’m just not sure that autism is the right “sticker”.
I have high levels of empathy and have been a people leader for many years
These aren’t incompatible with autism. There are different social skills that are learned and performed in fundamentally different ways, to the point that I’ve met people who are great speaking in public but then become clueless and red as tomatoes when they want to flirt with someone. Developing relationships organically is pretty different from public speaking, fulfilling the role of a leader in a structured activity or organization, or debating.
Gathering data like this for “curiosity” is understandable, but too vague for medical and personal data.
Without a stated purpose, data can be presented to form any and all kinds of narratives.
Will it be used to form a tabloid piece about “overwhelming majority of people in autism community aren’t actually autistic” fuelling some agenda against the “self-identifying victim mentality epidemic”? Because it can, whether it is the intention or not, and I want less of that.
Or is it used to form an opinion on whether a clinical self-diagnosis is important to people? Or difficult to get? If so, please word the questions differently.
Honestly I’d be very surprised to see an online autism community with a majority of people professionally diagnosed, even more surprised if the majority were diagnosed as children. Even setting aside how underdiagnosed large sections of the autistic population are, the people who need to seek support and validation that they belong to a community are much more likely to be those who didn’t have the right language or support as a child.
Thank you for asking this. If I am being completely honest, I asked this to get a sense of whether I am “valid” because I am self identified too. The internalized imposter syndrome is strong with me. The toxic effect of this is that I project my own insecurity onto other self identified people sometimes and feel like I need to know the composition of the space to decide how “authentic” the expression of autism is there. I am fully aware it is an extremely harmful view to have, but I unfortunately do have it.
If my own autism thought me one thing it is all intelligent consciousness is valid, no matter what species and divergenties.
I prefer a bigger open community where we can all respect each others quirks and differences away from neurotypical biases then a small exclusive group of “real autist” gatekeepers.
Hey, thanks for answering my well-meant but somewhat blunt question :)
I feel the same as you. I have self-diagnosed after years of research and even gone to multiple seminars on autism due to diagnosed family members, and I still worry that it’s not valid enough.
Not for lack of trying to get a professional diagnosis, I’m on my 3rd attempt now, but they generally ignore masking adults in my country. While the world in general is on DSM-5, we’re still on ICD10 (from 1992!!), so professional competence on adult and masked ASD is scarce.
In short: Self-diagnosis is 100% valid. It has to be, because not everyone are able to get one affordably or even at all (or may not want one because it locks them out of certain professions), but they still need support and understanding.
Didn’t find it blunt at all. Very fair and important question. I am a researcher in autism related field (I also have imposter syndrome about calling myself autism researcher, I prefer language researcher) and keep myself immersed in all the latest research. Yet I don’t feel like I have the knowledge required to decide and be sure I am right. It is somewhat a me thing but I recognize it is largely the unavoidable outcome of medicalizing an identity (would love to hear what others here think about autism as an identity). The individual can not be the authority.
Sorry to hear about your struggle with trying to get a diagnosis. May I ask, are you a woman?
How should I answer? I was diagnosed as autistic in kindergarten but not told as a child then independently diagnosed as having Asperger's Syndrome, and then told about my childhood diagnosis, in my early 20s and then back to ASD when when Asperger's stopped being recognized as an independent diagnosis in my 30s.
My neurologist says she suspects it very strongly and the test she administered was conclusive as well but she’s not qualified to make an official diagnosis and waiting times for adult women are between 3 and 6 years in my city (and that’s going the private route).
Because in some places it can take a very long time to find the resources to get diagnosed. Why do you think people should wait to look for ways to help themselves until they got an official stamp?
I’d agree in part. In my opinion self diagnosis doesn’t mean you get to demand accommodations or special treatment. Self diagnosis for me means that I have the terminology to look for things to change in my life to make things easier, for exercises to help myself and to accept that I might not be able to do everything other people can do. It allows me to stop telling myself that I’m lazy, stupid, retarded etc. It does not mean that I walk around demanding “attention”.
That’s why I don’t see a problem with self diagnosis though. I did fully explain why I’m not looking for an official diagnosis in a separate comment, that’s why I feel very uncomfortable with the reactions about self diagnosis.
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