The Box of Shame Almost Crushed Me but Autistic Pride Was My Escape - The Dangerous Trap of "Battling Autism" (And How It Nearly Killed Me)
From Packed Boxes to Autistic Pride: How My Diagnosis Saved Me - Unpacking My Autistic Self & Why Autistic Pride Isn't Just for June 18th.
Today (June 18th) is Autistic Pride Day.
Eight years ago, after being diagnosed Autistic (a few months shy of my 30th birthday), this day meant more to me than it does today (because since then, I've changed... and so has the world).
There are many good reasons to have days, weeks, and months celebrating different groups of people. These days can start conversations and bring awareness, compassion, and understanding to a group or cause, but they can also spread harm, misinformation, and stigma.
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Autistic Pride Day, to me, seems like an answer to 'Autism Month' (which, early on, did more harm than good to Autistic People).
It (Autistic Pride Day) was meant to be OUR DAY, when Autism Month, on the other hand, started as a month where non-autistic parents of Autistic children would educate the world on the "pains" and "dangers" of having an Autistic family member (with anti-autistic propaganda pieces like "Sounding the Alarm: Battling the Autism Epidemic" and "I am Autism" that painted being Autistic as a life (and family) ruining fate.
Every April, there would be new books, movies, news stories, and blogs written by non-autistic people, but our voices (the voices of ACTUAL Autistics) were often omitted (or stripped from our narratives). They (these non-autistic saviors that none of us asked for) would dismiss us, talk over us, and tell us we weren't Autistic (or Autistic enough) to take part in the conversation (if we can speak, communicate, or type online).
In those days, Autistic People who could type, speak, or live without full-time care were often dismissed as "not really Autistic" (especially if we could mask or camouflage our Autistic traits because "real Autistics can't hide their Autism" ignorant people would say).
They're Simply Repeating What They've Been Told
Many of these non-autistic parents (who may have been Autistic themselves but not known it) had been told early on (when their children were too young to know yet what they'd be capable of in adulthood) that "because their children are Autistic they will never do things" that they now see these Autistic Adults doing... which doesn't line up with what they've been told by doctors about their child (and other Autistic children) for years (and, I'm told, it can either give hope OR feel like a slap in the face -especially if it makes a person question if the path they've been led to and chosen may have caused harm to their child).
Who's lying?
The doctors they've trusted for years... or the Autistic stranger who's doing nothing other than sharing an experience the parent believes is outside of what they've been told an Autistic Person can do.
Parents don't want to believe that a doctor they trusted with their child's care might not know everything (or could be wrong) because that might mean they've harmed their child by listening to bad advice.
Some people trust their doctors, especially those they've seen for years, and will (reasonably) trust a doctor they've known more than a random stranger from the internet (even if the stranger online is right and the doctor is wrong).
Medical professionals for many years had only fed worst-case scenarios to parents and guardians of Autistic children.
Parents who subscribed to this "only negative” view of Autism have been told for years (and likely believe) that "Autistic People can't do" a long list of things. To many, this (false) "list of things Autistic People can't do" became the "definition of Autism" (which didn't leave room for Autistic People who don't fit neatly within those assumptions about the varied skills and abilities of Autistic adults).
Ten years ago, and even eight years ago, these parents (who thought Autism was ONLY a long list of deficits) still had primary control over the "Autism Narrative," drowning out and speaking over Autistic People without shame.
In recent years, we've clawed the microphones back from the "Autism Warrior" types (saviors who would do better by getting out of our way but could not set their egos down).
Not taking medical advice from people who don't know you well enough to comment on your health is usually a great philosophy. However, when an entire group of people is given a medical label and then not allowed to speak from their lived experiences within that label (while being spoken over by doctors and others who don't have first-hand knowledge of that experience), we've taken a massive step in the wrong direction.
Autism Month, when it started, was NOT a month by or FOR Autistic People.
It was two things:
A pity party for parents who had bought into the lie that "Autism STOLE their child" or a "normal child was buried under all the Autism."
A way for behaviorists and other greedy capitalists (with products to sell) to pitch their "solutions" to "the Autism Problem."
All the parents and guardians who complained about their Autistic loved ones, wrote blogs and books, or did news and media interviews "about Autism" (not Autistic People) and how "hard" it was to "live with Autism" were "marketing Autism" as "a problem" (whether that was their intention or not). This (creating an "Autism Problem") primed the scene for predatory capitalists to swoop in and pitch "solutions" (that exploit vulnerable families and can cause severe harm) to that problem, such as (but in no way limited to):
Bleach-based "Treatments" (e.g., MMS/CD, chlorine dioxide): Promoted as a "miracle solution" to "detoxify" the body
Risks: Severe vomiting, diarrhea, chemical burns, organ failure, and life-threatening toxicity
Chelation: Claims to remove "heavy metals" falsely linked to Autism
Risks: Kidney failure, cardiac arrest, hypocalcemia, and death
Traumatic behavioral interventions that punish Autistic traits and reward Autistic People for mimicking non-autistic people's behaviors (at home, in school, or in a center for Autistic and other disabled children).
Risks: Disconnection from and loss of self and loss of connection to one's own wants and needs. Isolation, burnout, anxiety, depression, cPTSD, PTSD, trauma-driven people-pleasing behaviors. Increased risk of abusive relationships involving coercive control later in life and into adulthood (due to being trained to ignore our needs and to put the comfort of others above our own comfort for most of our lives).
At least, that was my experience.
These scams (which paint Autism akin to a demon that must be cut out from a person) are often expensive and use language like "miracle cure" or claim to "cure" or "reduce symptoms of Autism" (without looking at the actual cause or reasonings behind what they try to squash).
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I hope this helps,
- Lyric
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