After I wrote this post, the news broke about 18 year old Salvador Ramos, who killed in cold blood 19 elementary school students and 2 adults in Uvalde, Texas. I am in no way equating the agony of having your child murdered in school with having a child with autism. I am going to point out that systems everywhere are broken beyond repair. And failing children right into adulthood. Those who make it. We have a generation that literally has the WORLD in their palm of their hand, and yet are so very alone. Angry. Vindictive. 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?
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.
And to families in Uvalde, and in every city from coast to coast that has had a shooting, I'm sorry we've let our kids sink into this fractured fairy tale called the USA.