As head of a non -profit organization that supports thousands of children and adults with developmental disorders in the County of Los Angeles, I saw the strength, resilience and dignity of families raising autistic children. So when I heard the American secretary for health and social services claim last week This autism “destroys” children and families and is “catastrophic for our country”, I was deeply disturbed but unfortunately, undeveloped.
The overworked remarks of Robert F. Kennedy Jr., like many in public discourse on autism, reduce complex human stories to a simple tragedy. They paint individuals and families as broken. They perpetuate the obsolete idea that a diagnosis of autism is, an end, an end, not a beginning. And for families already faced with daily challenges – navigate school systems, medical insurance, therapies and work, life and care sales – this type of language is another blow.
Worse, he distracts real and urgent problems facing these families at the moment – in particular the cuts offered in Medicaid which could devastate the supports on which they count.
To be clear: the prevalence of autism increases. Centers for Disease Control and Prevention estimates now Children out of 31 in the United States are diagnosed with autism, against 1 in 36 just a few years ago. But that does not mean that autism is a disaster. The CDC claims that change reflects better awareness, improved diagnostic tools and more families – especially in poorly served communities – access the assessments and services their children need.
Here in California, the State Department of Development Services serves more than 400,000 Adults and children with intellectual disability, including autism. This represents an increase of 40% in the past decade, but the available services have not followed the pace. From help to early intervention and behavioral therapy to professional support and independent life programs, families are often confronted with long waiting lists and limited options, especially in working class and low -income communities.
Now, just as more and more families are looking for help, some federal legislators call for MEDICAIDE budget cuts which could threaten services for millions of Americans with disabilities. More than 15 million people with disabilities Count on Medicaid nationally, including more than 1.9 million here in California.
These are the threats we should talk about. Panic not made on vaccines. No theories not based on the cause of autism. And certainly not reckless words that make families are ashamed to seek support.
Kennedy is right on one thing: families count. But if we really care about them, we have to protect – not politicize – them. I met single parents occupying two jobs that spend their nights filling documents to have their child approved for therapy. I saw brothers and sisters intervene to take care of the brothers and sisters sailing their own adolescence. I have seen whole families become ferocious defenders, building welcoming communities where their children can prosper.
What these families need is not blame, but investment. In services. In the accommodation. In the ways. In research – yes – but also in dignity, and the right to a complete and self -determinated life.
The individuals of my organization are not “destroyed”. They learn, work, create art, volunteer, make friends and build a goal of goal. Caregivers, educators and direct service providers who support them are not defeated – they are relentless. And their stories deserve to be told not as edifying stories, but as testaments to the possibility.
So, instead of invoking fear, let's focus on the future. Let us engage in equitable access to the services. Make sure that California leads the nation to support autistic people and development disorders. And let's reject the rhetoric that stigmatizes difference and isolates those who live it.
Los Angeles is a city built on diversity, innovation and the heart. Our community of disabled people is no different. It is time that we honor their contributions – not for pity or panic, but with a partnership and progress.
Veronica A. Arteaga is president and chief executive officer of the exceptional children's foundation, whose headquarters are in Culver City.
