by Rabbi Shoshana Meira Friedman
When my son was 3, we started bringing him to a private Occupational Therapist to help with sensory processing challenges that his preschool had flagged. I stayed in the room with him and loved every minute. The vibrating toys. The weighted balls. I rolled around on the gym mat, feeling the weight of my body press against the floor. I never wanted to leave when our time was up. At home, we bought lots of sensory supports, & I found myself using them as much if not more than my son did. Fidget toys. Weighted blankets. An hour in the therapy swing.
When my son was diagnosed as Autistic at 3.5, I learned everything I could from Autistic adults about how to support him. As I learned, I didn’t see myself as Autistic at all. Yes, I knew I had sensory sensitivities, was easily exhausted by social stimulation, & had unusual cognitive processing. But I couldn’t possibly be Autistic, could I? As a child I had always been able to follow adult direction. I excelled in school. I felt hyperempathy. I made eye contact (so did my son, come to think of it…).
And as an adult, I fit into lots of different social situations... I was like a chameleon, really. Didn’t Autistic people stick out as obviously different? And anyway, I had high executive functioning… didn’t I? I mean, if I sat down to do a project, I would focus intensely on it until it was done... I kept meticulous lists of what to do, & I did them...
Despite all the research I’d done for my child, I still carried many misconceptions about Autism.
Then, about 18 months after my son’s diagnosis, I began to work on a memoir. As I wrote about my childhood and 20s, it felt like I was writing my way through a mystery. Why had I always felt so fundamentally different from other humans? What was up with my relationship with food? Where on earth had the belief come from that I had to save the world from environmental destruction... a belief that impacted every career choice I’d ever made? Why could I teach and write like a superhero but not feed myself lunch?
Working on a memoir led me to wonder if I was neurodivergent - a word that had never come up in 2 decades of therapy.
I had identified as a Highly Sensitive Person for decades. So, I took a breath and googled “Is Highly Sensitive Person (HSP) a form of neurodivergence?” This Google search changed my life. It led me to a trove of opinions expressing that Elaine Aron’s whole concept of HSP ended up misleading a generation of high-masking Autistics, including countless women and those assigned female at birth. Many “HSP” people (though not all!) are actually high-masking or otherwise non-stereotypically presenting Autistics.
This led me to Samantha Croft’s Unofficial Autism Checklist, which lists about 180 traits she has commonly seen in her practice supporting Autistic women without accompanying cognitive disability.
I read the list with my mouth dropped open. I had 160/180 traits. That night, all the pieces fell into place.
If Autistic social differences/challenges (which the DSM-5 calls “deficits”) can include hyperempathy, social exhaustion, camouflaging to fit in, social anxiety, & info-dumping… I
f Autistics have uneven developmental progress and uneven skillsets as children & adults…
If stims can include behaviors that are subtle to an outside observer…
If special interests (Autistic passions) can include socially typical topics…
If gifted Autistic children often come up with stories that they are destined for greatness or need to save the world as a way of explaining their mysterious sense of difference...
If Autistics are at risk for infatuation, black-&-white thinking, meltdowns, shutdowns, burnout, emotionality, grandiosity, eating disorders...
If many Autistic children fit the profile of intellectually advanced, socially different, needing routine/rigidity to feel safe, & have sensory needs that are subtle or hidden from adults...
...Then Autism explained me. It honestly explained just about everything about me.
Self-diagnosing as Autistic was without exaggeration the single most healing thing to ever happen to me. I dove into the Autistic community online and met other late-diagnosed autistics.
I felt fully human for the first time in my life.
While my son & I celebrated our newly shared Autistic identity, I went into a months-long burnout as every spare ounce of energy went into reviewing my 40 years of life through this new lens. I sought out Autistic advice & learned how to recover from burn out – rest, special interests, stimming, time in Autistic community. Yet every morning, even in burnout, I woke up with the sense that I had a new gift to open - and the gift was me.
As a public figure, I wanted to help lend credibility to the entire concept of self-diagnosis by being able to tell people that I had self-diagnosed first and gotten clinical confirmation. (Which I did – my evaluators had no doubt at all that I am Autistic, level 1 "needs support.")
But many people do not get this confirmation because so many evaluations do not catch non-stereotypical Autistic presentations. I was very lucky that a friend tipped me off to a clinic that was much less expensive than most, and specializes in adult women with non-stereotypical presentations. (See my post about Clinical diagnosis for information about Wilderwood).
So many Autistic adults cannot access an accurate clinical diagnosis.
Not only that, but there is often very little reason to try. Supports do not magically appear once diagnosis is clinically confirmed, and it can be a timely and exhausting process that can costs thousands of dollars.
For these reasons, self-diagnosis is valid in the Autistic community. It is often all that is needed to feel validated and start making life changes that will support our regulation and wellbeing.
