The Fractured Fairytale of Autism
I wrote this post after the massacre in the Uvalde, Texas in 2022. "We have a generation that literally has the WORLD in their palm of their hand, and yet are so very alone. Without coping skills. We say it's a gun issue. We say it's a mental health issue. It seems like a radically altered childhood issue. And no one wants to talk about it. What the hell has happened to our kids?"
Three years later, we are at least talking about the catastrophic health, mental and physical of American children on a Federal level. Is it enough? Is it accurate?
The Fractured Fairytale of Autism
By Kim Rossi
Those readers of a certain age will remember the Fractured Fairy Tales cartoons that aired during Bullwinkle. Today's post is about the fracturing within our community. Ignored. Disregarded. Glossed over. Not here.
Many of our readers are drowning in ever deeper waters as their children head into adulthood. There are few supports once school lets out. Day programs are turning down autistic individuals with high levels of need. Jobs are grim for those who qualify for viable employment with or without supports. Medical freedom and Covid have eclipsed autism everywhere - even within organizations that were founded by warrior families. Biomedical treatment is a distant memory. Spelling has become the new darling. New reports of beautiful Elizabeth Bonker, who was Valedictorian for her college class, they mention, "She lost her speech at 15 months," but none asked WHY??? It's as if they said, "She got glasses in 3rd grade." Perfectly normal. Spelling is wonderful, I've seen my own daughters intelligence shine through. I am a big fan.
Then reality steps in. I just saw a spelling training program that sounds fantastic. 8 weeks of intensive training with support. $1000 per trainee. I need 4 or 5 trainees at least. I can't be the only "voice" for my 3 daughters. I need others to be able to train and learn, but at $1000 each? Even if I train them. Staff quits. What then? I have been my daughters’ trainer for more than 25 years. And with spelling's success and marketing, there’s yet another documentary, and an invitation to fly to the Midwest to view it. I have a hard time getting to the Stop and Shop up the street. It's enough. If I sound like I'm complaining, I am. I'm angry that after 2+ decades of work, 15 years of Age of Autism, nothing much has changed for families. Young Moms who are able to get into a diagnosis center leave with exactly what most of us got years go. NOTHING. No road map. No plan. Just "Call early intervention and find yourself 30 hours of ABA a week. Good luck, call us in a year." Students in school get speech and OT that are all but useless even after 18 years. Assistive Technology flopped, it's completely hit or miss who can use it, program it, buy an iPad every few months to replace the one thrown across the room and shattered. It's disheartening in the extreme. Yesterday, I saw a post that only hardened my heart. A dear friend of our community, a PhD with autism who was active at Autism One and other conferences, wrote:
"Reporting from London as XXX and I gear up to explore literature and research findings that support shifting to strength-based views of autistic people. We shall examine US and UK current models through a strength-based lens as we review advances in health, education, media and advocacy. What ideas do you have to shift from thinking of autism in terms of deficit, disability, and disorder toward abilities and strengths?"
My daughters will never travel to London. Lord, give me a "strength based view," to keep going. If you still love what we do at AofA - Anne, John, Cathy and I - we are AofA - please consider a donation to keep us going. DONATE - Tax Deductible
Thanks.
Kim
Well said... The issue I have with Spelling is that it has a bit of an anti-cure, neurodiversity slant. Like most therapies, it highlights the people that learn it quickly and find success while those who are struggling get a shrug and advice to 'see a practitioner' as if we haven't sunk thousands of dollars into seeing practitioners already.
For those that are interested in a cure, or medication that is more than repurposed psych meds. please consider joining this group. There is a major letter-writing campaign going on to expedite Suramin Trials for Autism. https://www.facebook.com/groups/252778323945406
Posted by: TLS | June 21, 2025 at 11:50 PM
Kim-I remember Fractured Fairy Tales and you are absolutely correct that our now grown sons and daughters have been fractured, ignored, disregarded, glossed over, non-existent and invisible. My son was diagnosed at four years old and now he is an adult who still has autism and we still hear the same phony rhetoric from the professionals that the answer is ABA, which I did for my son at home and then in a school for ABA. The result was no change and still the same condition that he was diagnosed with at four. All the other parents that I know who followed the same path have had the same disappointing results from this "phony autism cure." We are all in a state of disbelief that after all these years, no progress has been made to do the research necessary to find the correct medications that actually could reverse the neurological damage done to our now adult sons and daughters. We are left to be caregivers with dwindling support from programs that have very high turnover rates due to the fact that staff need 2 jobs to support themselves, and sometimes their own families with the low rate of pay they receive for very challenging work. I thank God for all the support from Age of Autism and would never have made it this far without your outstanding and informative website.
Posted by: Gayle | June 19, 2025 at 06:50 PM
Good morning to all! Excellent points Ms Rossi. What has really Changed in the last 20 years? I've been reading AoA since I think 2011.
Hopes got super high in 2014 , I think that was the year when William Thompson step up and told the truth about the CDCs lying and manipulation of the MMR data. What happened with that? I believe the records where given to congressman Posey from Florida, but no congressional investigation ever happened. Why not? He even went before a session of Congress to report this, but crickets, nothing really happened. Sad!
We keep pressing forward with love and courage and a strong mind and backbone. We exist in our own personal realm and it's here where together we make a huge difference. Here In. TX our exemption Rights are now well protected, by banning together affected families made a huge difference in our state laws regarding religious exemptions. Stay strong there are forces at work that are fighting tooth and nail to remove our exemption Rights.
Thanks again for all the great work you do here on AoA.
Blessings to all!
Posted by: Gerardo Martinez | June 19, 2025 at 07:34 AM