Do I Wish I Could Have Been Diagnosed Autistic Sooner?
I used to, but at this point in my life, I no longer wish I could have discovered I was Autistic sooner. I'm happy I learned the truth when I did (and grateful I was spared from ABA).
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Since my Autism diagnosis almost seven years ago, there is one question I've been asked with reasonable consistency.
This week on Founding Member Friday, I answer one of my most asked questions:
Do I wish I could have been diagnosed Autistic sooner?
CONTENT WARNING: This article contains discussions of Autistic Conversion Therapy, also known as ABA (Applied Behavioral Analysis)
When I was first diagnosed, my answer would have been a solid "Yes!" because of all the confusion and pain from not knowing I was Autistic for the first 29 years of my life, but today (knowing what I know now), my answer is a solid "nope" (for multiple reasons).
Finding out I was Autistic after a lifetime of being hard on myself (and everyone around me) left me drowning in a multitude of emotions, including all of the five stages of grief (denial, anger, bargaining, depression, and acceptance).
Learning I was Autistic as an adult doesn't mean I was "suddenly Autistic" after years of not knowing.
I am (and always have been) Autistic, meaning my life (and all the moments in it) have been influenced by my Autistic mind even when I didn't know the truth about my brain.
Growing up thinking you're something you're not is a traumatic experience.
I was taught (because nobody knew I was Autistic) to emulate and "be like" non-autistic people - an unfair goal for someone with a brain like mine. The non-autistics around me were the ones who set the pace, the expectations, and the bar for success - a bar that was (for me) almost always out of reach.
When I failed to measure up (when compared to the non-autistics around me) I was often scolded, mocked, and punished, or "encouraged" to "try harder" and apply myself "more" (even though I was already doing my best and trying harder than most people around me).
I have a core wound, that I am not enough. This wound extends into everything I do.
Even when I do something uniquely wonderful, I struggle to see my gifts and talents as such (because the critiques I've heard my whole life have become engraved in my mind "try harder," "a little bit more," "do better," "are you going to quit now?" pushing me past where a reasonable person would have stopped).
Even though I was not labeled Autistic for most of my life, I (a visibly NeuroDivergent child) did not escape the stigma of the Autism and ADHD BrainTypes I carry.
My struggles were visible, especially in school, where my cries for help and unmet needs were labeled as behavioral issues (that needed to be extinguished so I could be less inconvenient to my teachers and peers).
I didn't know I was Autistic, ADHD, or Hyperlexic back then (nobody knew), and because nobody knew the appropriate labels to call me, others were applied:
I was bad - when asked too many questions, or I couldn't sit quietly in my seat, giving the teacher "appropriate attention" (staying seated, not making vocal sounds, with my eyes on her, my feet on the floor, and my hands not moving).
I wanted to be good - but my body and mouth had a mind of its own. Even now, my body will often move without my realization or direction, but as a kid, my body (and mouth) was much more challenging to control.
I was stubborn, difficult, and rebellious - when I froze up from anxiety or didn't have enough information (or confidence) to start something.
I wanted to act but was stuck frozen - and the punishment and scolding didn't help ease my anxiety or motivate me.
I was sensitive, moody, and dramatic - when I felt exhausted and overloaded by overwhelming sensory environments or big feelings.
I wanted to "keep it together" - but I couldn't hold in the emotions and pain any longer.
I was manipulative, pushy, and inconsiderate - when I tried to be firm in my needs, struggled to articulate my needs verbally, or had meltdowns because of not having my needs validated or accepted.
Eventually, after years and years of being called all these names (and many more that are MUCH worse), I began to believe all the negative things people said about me.
Because finding out I was Autistic was the magic word that took all those other words away when I first learned this fact about myself. At that time, my primary emotions (after the initial phase of trying to disprove my diagnosis by reading other Autistic People's stories and only managing to convince myself further that I was, in fact, Autistic) were anger and frustration at the years of not knowing.
Back then, not knowing what I know now, I would have given anything to have known I was Autistic earlier in my life.
When one goes through a traumatic experience, it can easily become the start of a downward spiral (or an upward trend if that person has already reached "rock bottom" as part of their trauma).
There are quite a few emotions people will experience when processing grief, and that experience isn't necessarily linear.
For a while, I bounced back and forth between emotions, sometimes feeling multiple emotions at once, especially when I was first diagnosed before finally fully accepting my multiply-NeuroDivergent brain. There was relief in the knowledge, but also anger and frustration at all the pain not knowing had caused me over the years.
That part of me that suffered, longed deeply for an alternate reality (where all the pain and misery never existed) now feels differently.
Now (after almost ten years of self-work), I actually like myself. The person I am today (who better understands why it is probably better I wasn't identified until late) wouldn't exist if I had found out earlier in life.
As an undiagnosed Hyperlexic AuDHDer (a person whos both Autistic and ADHD), even without a formal diagnosis for any of my BrainTypes, I already experienced enough behaviorism in an attempt to "normalize" me and curb my "undesirable" NeuroDivergent "behaviors" to traumatize me without being in a formal behavioral modification program.
Had my Autism been identified earlier, I might not have been as lucky.
In the early 90s, when I first entered the school system, NeuroDiversity wasn't a thing. . . yet.
At that time, pathology and Autistic Conversion Therapy (ABA or Applied Behavioral Analysis) were the gold standard (and even though the US government has shown ABA not to be effective and other studies have shown elevated rates of PTSD in Autistics exposed to ABA, some still think it to be today).