The Scariest Thing About Autism
Read now (4 mins) | People wanting me to 'fix' myself
November 9, 2022
In the 10 years since I was diagnosed autistic, a lot has changed. The prevailing theory back when I was diagnosed was that autistic people had no empathy or “theory of mind” and therefore needed to be taught or trained to “act normal.”
My early therapy was largely positive in that I finally knew what was ‘wrong’ with me, and I had a host of kind folks offering support in ‘fixing’ these deficiencies. I was all in, and saw MAJOR improvements.
I learned what I was doing ‘wrong’ and how to get better at covering it up, or what can also be known as masking.
All that masking lead to a major episode of Autistic burnout and exhaustion, which led me to a strengths-based therapist who reframed my autism in a cultural context. Instead of looking at how to mask more efficiently, she taught me the value of UNMASKING and (crazy thoughts) ASKING FOR SUPPORT WHERE I NEEDED IT.
In the context of autism as an ‘unfortunate medical condition,’ being yourself and understanding where you need support is akin to failure.
In the context of the law of attraction, and bootstrapped success based on finding better feeling thoughts (aka CBT), unmasking and asking for help felt like not trying hard enough, not believing strongly enough, and not receiving gratefully enough.
It took 2 years of reprogramming for me to see that even though thinking my way out of ‘acting autistic’ with the self-coaching model technically ‘worked,’ it was unsustainable, harmful, and, frankly, ableist. And worse, I was teaching the same wrong lessons to other neurodivergent people.
The scariest thing about autism for me was knowing if I kept masking and trying to fix myself, I would die. My suicidal ideation was at an all-time high. But, if I accepted myself as ‘unfixably’ autistic—if I unmasked—I would lose friends and family members who thought I was exaggerating, not trying hard enough, or just plain making up my ‘condition’ as an excuse to behave in ways they viewed as inappropriate and relatively easy to fix by just ‘acting right.’
I managed through a lot of shame and grief, while releasing an identity that was killing me.
I was worried that people would leave me if I didn’t keep up the belief that changing my thoughts could change my experience, even when it came to how many synapses were in my brain and the chemicals that fired (or didn’t fire) to release some of those excess synapses.
People did leave…and I left people too. People I love and still wish could accept me as the Autistic person I am. But I had to let go of the people who only wanted to be in relationship with me if I agreed with them: my autism needed to be ‘fixed.’ Emotionally and mentally, letting them go is so much better for my health and well-being.
YES, thoughts are powerful and do change outcomes.
AND, autism is real, and I can’t think my way out of it.
YES-AND.
As I shed this old identity and learned to think through a strengths-based lens, I started to see autism not as a disorder, but as a culture.
Being an exchange student, I learned about culture shock and being open to the surprising reasons people in different communities did things differently. When I created The Autistic Culture podcast with Licensed Psychological Practioner, Matt Lowry, I had this vision of offering the opportunity to allistic and autistic people to be able to come for a visit every week to the land of Autistica to understand our values, traditions, and customs, just like you would if you were visiting Italy or Ireland.
If autism is a disorder that needs to be fixed, I have failed. But if recent research is right, and autism is a cultural difference based in biology, then I am hopeful for what is possible.
Autistic people have contributed so much to the world DESPITE being subjected to mockery and ableist interventions. Imagine how much MORE we could contribute if we were celebrated, instead of shunned, for our differences
I really hope you will listen to The Autistic Culture Podcast and leave us a rating or review so others can find it too. New episodes come out Tuesdays!
How have you shifted from a medicalized deficit-based model to a cultural celebratory-based model? Tell me about it in 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.