IS AUTISTIC SELF-IDENTIFICATION VALID?
Read now (7 mins) | A Glimpse into the Subversive Subplot of my Master's in Psychology Dissertation
I just completed a quantitative research paper comparing autism traits in medically diagnosed autistic people with the same traits in self-identifying autistic people and I can definitively say with more stats behind it than I care to ever think about again, THERE IS NO DIFFERENCE! I have now made my study live as a bonus thank you gift for our paying supporters.
As a prolific, life-long writer, yesterday (15 August) I turned in the hardest writing project I have ever done. I have written a 150 page masters communication thesis, a 600 page PHD thesis, 9 books (including a USA Today best seller), and let me tell you these measly 27 pages just kicked my ass!!!
Why? Because I believe the paper I just wrote could be a matter of life and death.
On the surface it looks like my dissertation is about comparing autistic trait levels between medically diagnosed and self diagnosed autistic people (with a non-autistic control group). That's true. I did that and quelle surprise! there is no statistical significance.
So many adults who self identify question whether they are right and when they go to get it assessed by a professional are told, no, that's not possible, you make eye contact, or you keep relationships, or you have a job, you have not made the right assessment. Despite your binders of evidence of AUTISTIC TRAITS, you are not autistic.
This means they are denied access to information and services that could help them manage the very real traits.
Until I started this research, I thought someone who had Autistic Traits was autistic. So I thought, 'I will compare autistic traits in self diagnosed people to medically diagnosed people and clear this problem up lickety-split.' But that's when I uncovered the sophisticated way the gatekeeping works. (I still don't fully understand the why, but I do understand the how!)
Once you get academics to agree there is no difference in Autistic trait expression between self-diagnosed and medically diagnosed people (because these charts are undeniable) they IMMEDIATELY start jumping up an down that some of the self-diagnosed people probably have autistic traits because they are trans or traumatized or bipolar! "PHENOMIMICRY," they cry... "WHAT IF WE PROVIDE THE WRONG TREATMENT???!!!"
Basically, you could take 2 people with the EXACT same Autistic traits, but ONE would be diagnosed autistic and the other wouldn't.
1. You have to have the traits. ✅
2. You have to be able to prove you had the traits as a kid. (often not possible for a lot of reasons)
3. You have to prove the traits are effecting your ability to work or love. (And someone else's opinion of if this is true is more valid than yours.)
4. And the traits couldn't possibly be explained by something else. (you know say ADHD or trauma as an example)
Now... at first I wanted to argue - let's stop at if you have the traits and want help managing those traits - let's get you help.
If you say the traits are effecting your ability to work or love that's good enough evidence to me. Why would my observation of this matter more than yours??? And why would it matter if you had the traits as a kid. If you have the traits now and they are causing you enough of a problem to ask for an evaluation, then you should get remediation tools for life with those traits.
• If you have sound sensitivities, get ear plugs
• If you have anxiety caused by books being unalphabetized, stop pretending you are fine with that and give yourself permission to alphabetize them
• If you keep getting fired for not smiling at the customers, get help finding jobs that are better suited to autistic communication styles.
• If you are so flooded with emotions or numbed that your brain keeps telling you to do things to your body you later regret, let's work together to find other ways to manage those feelings or numbness.
If addressing your Autistic the traits doesn't work, then we can move on looking for other explanations. Or for that matter, it doesn't have to be done sequentially or one at the exclusion of the other.
If you have autistic traits and the effect of having those traits in a word that doesn't tend to appreciate or accommodate them is bothering you, here are the tools to begin to alleviate that suffering. Now.
But something more interesting happened with my research and it's the real Trojan Horse of my dissertation.
Autistic traits are covered in the DSM under criterion A (social differences - they say deficits in the DSM 🙄) and criterion B (restrictive repetitive behaviors). Where my dissertation gets really interesting isn't my argument whether self-identification of traits is valid (it is), but it's about the way the traits themselves are described.
Turns out the interesting part of my research is the novel way I am taking on the bullshit that is criterion B in the DSM, restrictive, repetitive behaviors (RRBs). Basically RRBs have always been measured through the caregivers lens.
• 'This kid won't stop lining up his toys.'
• 'The kid won't stop playing in the sink.'
• 'This kid won't stop smelling people's feet.'
• 'This kid screams when we go to the grocery store.'
• 'This kid watches the Lion King over and over.'
It's like a list of things that annoyed people observing autistic kids (mostly boys) and then they grouped those annoying behaviors and said "hmmmm what do these have in common?" "Oh I know! They are all restrictive and repetitive!"
What these external observations miss is that this is NOT one thing. The behaviors they are observing have many causes and there for many mitigation factors (if they are bothering the autistic person - I am less worried about how they are bothering the caregiver although sure, it can be part of the conversation ONCE the behavior is understood.)
We could be playing in the sink because the running water is emotionally regulating and feels amazing or we could be paying in the sink because psychics is our special interest and we are coming up with innovative laws of reality.
We are screaming about getting in the car because we have an over responsive vestibular sense and it makes us car sick. Or we could be screaming about getting in the car because we are in the middle of Stardew Valley and our strawberries are going to need to be picked in 30 minutes and we only have 2 hours to do it or all the work of the last 3 days has been wasted.
We might be watching the Lion King over and over because we are bottom up processors and it is different for us with every watch. (Yes, we know you can't even imagine this.) Or maybe it's a comfort view and we are watching it over and over because we know exactly what to expect which is a warm fuzzy in a chaotic world.
In any case reducing these behaviors all to one group ignores the actual lived experience of being autistic. The often measure this with a really harmful questionnaire called the RBQ (repetitive behaviors questionnaire).
But part of criterion B includes special interests; and special interests are covered on the RBQ trait assessment measure (though it seems to confuse what an actual special interest is in some cases, but okay) and luckily there is a measure of special interests that is much more informed by actual autistic lived experience. That one is called the EASI-A. And here is where my subversion comes in. The revolutionary thing about my dissertation is I switch out the RBQ for the EASI-A as a way to measure RRBs as they’re lived, not as they’re observed.
I was able to do this because of past science about monotropism that I was able to build on. If this little tiny chess piece move is accepted, if it did it cleverly enough, it gives other critical autism researcher the leverage to move the discussion on criterion B in the DSM.
And so now that my dissertation is finally done after a hard long slog, I find myself asking... Yes friends, what is the next move to get self-identification accepted as a first step and immediately provide treatment for these restrictive repetitive behaviors or these social communication differences. What is the bad thing that will happen?
Here is what I am proposing: We validate their identification, and say let's treat your assumption as if it's real. Here are some ways you can work with the negative impact of these traits. Read Devon Price's Unmasking Autism and find an autism led group to join. If you don't start to feel better or still feel like you need more help and support, come back and we will get you on list for formal diagnosis
Even if it is phenomimicry in some cases - the actual autistic traits are caused by something else, let's say bipolar - how is that option likely WORSE than putting someone on a waiting list, saying your opinion of yourself and the cause of your issues isn't valid, wait 5 years we will help then?
Here is the abstract to my dissertation with some of the stats there if that is your jam. You can barely even see my little trojan horse lying in wait.
TL;DR
All that is to say….
1. Expression of Autistic traits is exactly the same for Diagnosed and Self Identifying groups.
2. If you have Autistic traits, you are welcome to consider yourself part of Autistic culture and HELP IS HERE FOR YOU IF YOU WANT IT
3. The DSM is a bag of shit and needs to be changed. I hope the work I have done in my dissertation can help.
And now that I am free from grad school obligations, I am going to add my full dissertation into my book, Am I Actually Autistic?: Your Guide to Processing the Identity Shock of Late Autism Discovery & Living Unmasked as a bonus chapter, get my book and audiobook finally finished up, and release it officially to the public in a couple of months with the launch of our new season and another very big and exciting post psychology master's degree completion project that I will be updating you about very soon! You can get a free copy of the book as a gift with your membership here so if you aren’t already a member now is a great time to join!
Just read your post about this over on Facebook and came directly here to share it on Reddit
You are amazing and this work is so important--thank you!