Because the chief of a nonprofit that helps 1000’s of kids and adults with developmental disabilities throughout Los Angeles County, I’ve seen firsthand the power, resilience and dignity of households elevating youngsters with autism. So after I heard the U.S. secretary of Well being and Human Providers declare final week that autism “destroys” youngsters and households and is “catastrophic for our nation,” I used to be deeply disturbed however sadly, not stunned.
Robert F. Kennedy Jr.’s overwrought remarks, like many made in public discourse about autism, scale back complicated human tales to easy tragedy. They paint people and households as damaged. They perpetuate the outdated concept that an autism analysis is, starkly, an ending, not a starting. And for households already going through every day challenges — navigating college techniques, medical insurance coverage, therapies, and work, life and caregiving balances — this sort of language is one other blow.
What’s worse, it distracts from actual, pressing points going through these households proper now — particularly proposed cuts to Medicaid that might devastate the helps they depend on.
To be clear: The prevalence of autism is rising. The Facilities for Illness Management and Prevention now estimates that 1 in 31 youngsters within the U.S. is recognized with autism, up from 1 in 36 only a few years in the past. However that doesn’t imply autism is a disaster. The CDC says the change displays higher consciousness, improved diagnostic instruments and extra households — particularly in underserved communities — getting access to the evaluations and companies their youngsters want.
Right here in California, the state Division of Developmental Providers serves greater than 400,000 adults and youngsters with developmental disabilities, together with autism. That’s a 40% enhance over the previous decade, however companies which might be obtainable haven’t saved tempo. From early intervention assist and behavioral remedy to job assist and unbiased residing packages, households usually face lengthy wait lists and restricted choices, significantly in working-class and low-income communities.
Now, simply as extra households are in search of assist, some federal lawmakers are calling for Medicaid price range cuts that might threaten companies for thousands and thousands of People with disabilities. Greater than 15 million individuals with disabilities depend on Medicaid nationwide, together with greater than 1.9 million right here in California.
These are the threats we ought to be speaking about. Not manufactured panic over vaccines. Not unfounded theories about the reason for autism. And positively not careless phrases that make households really feel ashamed for in search of assist.
Kennedy is correct about one factor: Households matter. But when we really care about them, we should defend — not politicize — them. I’ve met single dad and mom working two jobs who spend their nights filling out paperwork to get their youngster accepted for remedy. I’ve seen siblings step as much as take care of brothers and sisters navigating their very own adolescence. I’ve seen complete households change into fierce advocates, constructing welcoming communities the place their youngsters can thrive.
What these households want will not be blame, however funding. In companies. In housing. In employment pathways. In analysis — sure — but additionally in dignity, and the best to a full, self-determined life.
The people my group serves aren’t “destroyed.” They’re studying, working, creating artwork, volunteering, making buddies and constructing lives of function. The caregivers, educators and direct service suppliers who assist them aren’t defeated — they’re relentless. And their tales should be informed not as cautionary tales, however as testaments to chance.
So as an alternative of invoking concern, let’s give attention to the longer term. Let’s decide to equitable entry to companies. Let’s guarantee California leads the nation in supporting individuals with autism and developmental disabilities. And let’s reject rhetoric that stigmatizes distinction and isolates those that stay it.
Los Angeles is a metropolis constructed on range, innovation, and coronary heart. Our incapacity neighborhood isn’t any totally different. It’s time we honor their contributions — not with pity or panic, however with partnership and progress.
Veronica A. Arteaga is president and CEO of the Distinctive Youngsters Basis, headquartered in Culver Metropolis.
