My Favorite Advice for Those Considering Autistic Self-Diagnosis
Read now (3 mins) | A beginner's guide
July 31,2023
My advice for anyone who thinks they might be Autistic is to start by taking 3 online tests of Autism. This is the STARTING point - not the end point.
Here are the tests you should take:
1. Raads-R
3. Autism Spectrum Quotient - AQ
If all scores indicate Autism:
If you take these 3 tests and all of them say highly Autistic, start to read some articles on the websites Neuroclastic and Autistic, Not Weird and see if the advice in there feels like it would be helpful for you. This is just a gut check. If you are reading articles on those sites and saying OMG THAT’S ME! And you feel a sense of shared culture or “home.” You probably have your answer.
Your job now is to decide what else you NEED to know. It could be that this is enough for you. You can simply self-identify as Autistic and use the tools and the community that help you, and ignore the rest. (There are so many great resources out there - just make sure you ignore anything labeled Autism Speaks or that has the puzzle piece logo—these groups believe Autistic people are A) broken and B ) can and should be fixed or eliminated. Lots of actual research shows neither is the case.)
If all scores indicate NOT autism:
If you take 3 tests and all of them indicate you are NOT Autistic…Beware of false negatives due to highly skilled masking. If you are an adult (over 18) and you have been successful in your career or relationships it could be that you are good at mimicry: learning and copying successful people’s behavior even if it isn’t natural to you. This can eventually get very exhausting and lead to addiction, suicidal ideation, and other maladaptive behaviors. So, if you still suspect you might be Autistic, your next stop is the book Unmasking Autism by Dr. Devon Price. You can get it as a book or audiobook, and you can pair it with therapy from a neuro-diversity affirming provider (although, yes, they are hard to find) who can help you understand what masking is and see if you are doing it. Once you start to peal back the layers of masking, consider retesting.
If scores do not provide clarity:
If you take 3 tests and get mixed or border line results, one of the best things you can do is find some other Autistics who will do something called a “Peer review.” You can find us on reddit or in Facebook groups or on Twitter. Try tracking us down with the hashtag #ActuallyAutistic. Your new Autistic friends will ask you a bunch of questions. They will be listening to see if you have an Autistic accent, if you get very focused on an area of special interest, or if you have sensory sensitivities that cause you to seek or avoid certain experiences, but mostly they will be feeling into your connection.
Because we share a culture, even if we don’t agree or like each other, there is something familiar about meeting another Autistic. It’s like if I meet another Italian American who grew up in Connecticut, New York, or New Jersey I instantly know they are “paisan” - even if we share no interests and have different values. You can also read articles on Neuroclastic and Autistic, Not Weird and see if those “feel” like you. If so you are probably masking or have some coping methods that made the identification a bit more tricky.
Should you get a FORMAL diagnosis?
First, there is nothing wrong with self-diagnosis. There are lots of reasons who self-diagnosis and peer-reviewed diagnosis is as accurate—if not more accurate—than professional diagnosis. However, you will need a professional diagnosis if you are need to get accommodations at school or work, to fight a discrimination law suit, or if you are making a claim for government benefits.
If you decide you need a professional diagnosis, be aware this can negatively affect immigration, housing, and custody, so please tread with care if an official diagnosis could create negative consequences. Also note, there are long waits for a formal diagnosis and the costs are high and often not covered by insurance (in the US). Quality varies widely. Whenever possible work with someone who says they are Neuro-diversity Affirming, someone who actively and vociferously tells you they do not support ABA in it’s old or new formats, and they do not have a puzzle piece or Autism Speaks logo on their website. It’s always best to see an #ActuallyAutistic diagnostician but that option is not always available.
Additional notes and resources:
Another great resource is to listen to The Autistic Culture Podcast and see if it sounds like “your people” speaking “your language.” For many people, just being immersed in Autistic Culture (even through a podcast) can be more affirming and conclusive than any test.
*As always BEWARE OF: Autism Speaks, ABA, Puzzle Piece logo (This is all based on the word of the man who created gay conversion therapy. It is dangerous.)
Have you self-diagnosed? What was your process? Tell me about it the comments!
*Background note: Most people only have a vague (often, highly stereotyped) version of autism in their minds and believe that autistic children need (traumatic) ABA therapy to "overcome" their disability and appear "normal." After receiving an autism diagnosis in her thirties, Dr. Angela Lauria realized that she too had been mostly unaware of what it means to be Autistic. Like so many people, she started her journey by first gathering information and resources from the omnipresent (and problematic) Autism Speaks, but eventually moved away from the 'autism community' in favor of the 'Autistic community,' where she found kinship with other Autistic individuals and learned to let go of pathologizing language like 'autism spectrum disorder' and 'Asperger's Syndrome.' This autism blog (and her autism podcast, "The Autistic Culture Podcast") is meant to share her lived-experience insights to support others on a similar journey of diagnosis, understanding, and community. Embrace Autism--differences are not deficits.