45. April Adventures
An amusement for Autism Awareness/Acceptance Month
Click here for the “read aloud” version:
We’ve seen a lot of Aprils since my son was diagnosed with autism in 2002 — and a lot of conflicting opinions about how best to promote autism awareness, acceptance, and action for Autistic individuals and for their families. I have joined campaigns to celebrate the “ausome” in autism, and to mourn the loss of Autistic children to wandering and drowning. Some years I marched for certain organizations, and in later years spoke out against them. I’ve helped raise money for biomedical research, for inclusion programs, and for private specialized placements. I’ve written letters in support of behavior therapy, and against exclusion and restraint in schools. I’ve decorated with puzzle pieces and ribbons, with blue lights and rainbows, and, in some years, with nothing at all.
For a parent like me, autism advocacy can be a roller coaster. In fact, the more I thought about it, I could see how extending that metaphor could be a playful (and a bit snarky) way to explain a few things, from this mom’s perspective, anyway.
The ways that this disability impacts my son and our family can be quite serious. And, sometimes, I also just need to laugh. If you’re up for it, hop on this ride with me.
Please keep your feet inside the vehicle at all times, but feel free to keep your hands flapping.
This is: If Autism Awareness/Acceptance Month was a Theme Park…
Welcome to the Autism-Awareness-Acceptance-Action-Adventure Park!
Open only in the month of April (plus special hours whenever a new autism-related TV show starts streaming).
Attractions include:
Down the Rabbit Hole — Choose a slide to race into the causes of autism! New twisting tangents and deeper dives appear with every ride. Watch out for the dead-end tunnels of conspiracy theories and prenatal guilt! Ride at your own risk.
Alphabet Soup Soaker1 — Splash into the wetlands of ASD, from EI and I/DD to PBS and SSI! Raft into IEP white water rapids, drop into the FBA Falls, float past OT-PT-SLP islands and the fountain of FAPE, but don’t get caught under those DSM Dunk Buckets! Do you have enough spoons to get back to calm waters?
The Fidget Spinner — Please expect long lines for this popular stimmy spin ride!
Apple Tree Challenge — Climb into the branches to discover your own Neurodivergence! Fill your bushel with clues from your own kids, all those engineers in your family, and your favorite aunt that everyone always said was “quirky”!
The Echolalia Chamber — Catch the phrase (from a Pixar movie, State Farm commercial, or your second grade principal’s morning announcements) and repeat it back before your car makes its 25-story free-fall drop!
Temple Grandin!
Medical Mayhem — Race through this Wipe Out! style obstacle course past shaky blood draws, gag-reflex pill swallowing, rockin’ dentists’ chairs and sweeping side effects! Beware of pop-up co-morbidities that can knock you into the mud, like epilepsy, joint hypermobility, sleep disturbances, GI distress, and anxiety disorders! But don’t land on the final crash pad without Prior Authorization!
Perseveration Pinwheels — Start ‘em up and you can’t stop!
Cash Tornado — Think you can step inside this swirling tube of money and catch adequate funding for autism? Oh yes, it’s as impossible as it looks!
Catch one of our daily Parades where you’ll be asked to donate, walk/run, buy a t-shirt, sell raffle tickets or candy bars, and/or bid on silent auction items! Reserved seating with weighted blankets, headphones, and lighty-up spin toys always available.
Rock-Ability Roller Coaster — Dare to soar to the heights of positivity and the lows of dis-ability! This ride includes fast turns, bell curve lurches, and functioning level loopty-loos! Flashing colors change from blue to rainbow and everything in between! Choose your photo at the end of the ride: Catch yourself grimacing through the “Two Steps Back Frustration Flip” and grinning atop the “Autism is Awesome Apex”!
Win prizes at our Carnival Games, including:
Have You Tried…? — Toss darts at balloons of intervention strategies! It’s a crapshoot!
Target Practice AAC2 — Grab a Nerf gun and take aim at moving pictures and shifting letter cards to speak your mind without saying a word!
Whack-a-Troll — Rude comments about autism pop up fast!
Dunk tank — Step up and let your behavior communicate for you! Hit the bullseye to dunk your favorite target, like that Special Education Director (yeah, you know the one I’m talking about).
The Camouflage Costume Shop — “Typical” masking for the whole family! Caution: These can feel quite suffocating. Returns accepted anytime.
Oh! That’s Why Funhouse — Catch a glimpse of your childhood prior to your late-in-life diagnosis in this maze of magic mirrors and see how it all makes sense now!
The OverLoad Hotel — A spooky sensory experience! Glide through torturous rooms flooded with flickering fluorescents and offensive fragrances, barking dogs, people talking over each other, barbers, and sticky, slimy goo. Your car will be haunted by a neighborhood ghost who won’t stop touching your arm while making comments like, “C’mon, it’s not that loud” and “Well, I don’t smell anything.”
Cliff Divers — Step off the edge into adult services, housing, and employment. What’s at the bottom? Nobody knows!
Meet-and-Greet with the Latest Celebrity-on-the-Spectrum!
Feeding Therapy — Dine at one of our bistros:
THE FREE KITCHEN offers grub free from all known or even slightly suspected allergens (Food is not actually “free” – financial assistance required); or
Find your comfort food at HOMETOWN HAVEN, made-to-order meals just like mom’s. Exactly. No substitutions; or
Our most popular CARBS & COOKIES CAFÉ (overflow seating available).
Waitlist Escape Room — Solve tricky puzzles to prove disability, guardianship, and other legal rights to multiple state/federal agencies, memorize IDs and passwords, track down your Congressperson for key votes, and fill out repetitive paperwork before the hold music drives you bonkers!
Choose Your Battles — Strap on oversized boxing gloves and bounce into our inflatable Boxing Ring to duke it out over puzzle pieces vs. infinity symbols, supplements vs. psych meds, ABA3 vs. everything else, and so much more! There are no winners: competitors exit through an It’s a Small World type boat ride, swaying together with a common vision for all people to lead healthy and fulfilling lives. “…There’s so much that we share, that it’s time we’re aware…”
Please note: Exit from the Park requires guests to provide funding, transportation, aide support and/or respite care for at least one family who has difficulty accessing the Autism-Awareness-Acceptance-Action-Adventure Park due to…well, you know.
Thank you for visiting A-A-A-A-A Park!
Remember, if you’ve met one Autistic person and/or person with autism—Wait. You’ve only met one?! You can do better than that, it’s like 1 in 36 now….
See you next April!
So, tell me—
Which of these rides would you jump on (or skip)? What other attractions would you add to educate others about autism, from a family, caregiver, or individual perspective?
Here are a few sites for more info:
Autism Society of Greater Phoenix
Autistic Self Advocacy Network
National Council on Severe Autism
Image by Agata from Pixabay
Audio recording: Sound Effects from Pixabay & Music by Mykhailo Kyryliuk from Pixabay and “It’s a Small World” via the Internet Archive
Thanks for reading and/or listening! If you’re so inclined, please subscribe to receive new posts in your email (or on the Substack app) once or twice a month.
For the uninitiated, we’re swimming through: ASD (Autism Spectrum Disorder), EI (Early Intervention), I/DD (Intellectual and Developmental Disabilities), PBS (Positive Behavior Support), SSI (Supplemental Security Income), IEP (Individualized Education Plan), FBA (Functional Behavior Assessment), OT (Occupational Therapy), PT (Physical Therapy), SLP (Speech/Language Pathology), FAPE (Free Appropriate Public Education) and DSM (Diagnostic and Statistical Manual of Mental Disorders). Oh there’s so many more…Quite a mouthful!
AAC = Augmentative & Alternative Communication
ABA = Applied Behavior Analysis
There were quite a few I knew intimately and there were a few, for me, that were missing.
The ride of No Escape Room; Self Compassion and You; Grief is your Sister Wife…no divorce granted, and finally, Powerlessness isn’t Pretty…but must be accepted. Oh, and in place of the Gypsy Fortune Teller, there’s the People Whisperer…nonconformity, contradictions and getting real.
As I’ve probably mentioned before I have two kids with a list of intellectual disabilities and only recently I realized my life wasn’t a flu to get through. There is no “getting over” them. There is no “light at the end of the tunnel”. Only illuminating thoughts along the way (that I tend to forget easily).
And, neither is it a path of consolation (so why did I keep looking for something) instead my life is a journey of transformation that’s hard to accept. Tenaciously I seem to keep hanging on to what should or could be. Always wanting more and never becoming conscious that more equals war.
Finally, after more than two decades of the children, and my own traumatic beginnings, that one foot that had always been nailed to floor (while I traveled in circles) was released.
Tentatively I step out but the steps are contemplative not cathartic. I don’t mind because I’ve decided to allow things to obliterate me (I was slowly dying anyway, wasn’t It?) and where once I had thought it was because I had nothing left to lose, I now know it’s because I’ve everything to gain.
So very clever Robin, loved this entry today.