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Robert F. Kennedy Jr., the U.S. secretary of Health and Human Services, stated at a news conference April 16 that autism is a “preventable disease” that “destroys” families. He further insinuated that autistic people do not contribute meaningfully to society. This narrative runs counter to our experience as autism researchers.
We could write extensively about autistic individuals and colleagues we have known who are, among other things, published poets, advanced scientists and researchers, and fully employed taxpayers. The more important point is that all individuals with autism deserve to be included and supported in our communities.
Autism does not destroy families; neglecting and abandoning people with disabilities does. Unfortunately, that is just what Kennedy and the Department of Health and Human Services are doing. Kennedy and HHS have already made severe cuts to the Administration for Community Living, which funds programs that ensure disabled people remain in their homes and communities, with the people they love and who love them. Proposed cuts to Medicaid are next in line, which will impact an important benefit in Minnesota that covers medically necessary intervention for people under the age of 21 with autism and related disabilities. The work Kennedy pledged to complete by September — identifying environmental causes in order to address the “epidemic” of autism — does nothing to help autistic individuals and their families.
The language Kennedy used is especially chilling — and potentially dangerous. Society has been here before and the consequences of dehumanizing autistic people took decades of hard work to repair. And there is still more solid work to be done to right the wrongs of the past.
In the 1950s, Bruno Bettelheim propagated the idea that autism was caused by parents who were cold and obsessive. The “refrigerator mother” theory of autism had been born and would have a deep hold in both the medical community and the public for nearly 20 years. Autistic children were removed from their homes and sent to live in institutions. This theory of autism led many parents to experience intense guilt and shame, and children were left to languish in institutions. Parents were unable to convince professionals that they, indeed, loved their children deeply. A chasm was formed. Trust had been broken and lives forever changed. Belief in this misguided theory also meant that clinicians were failing to support autistic people in any sort of a meaningful way.
In the mid-1960s, critics of Bettelheim began to get some traction. Bernard Rimland, an early outspoken critic, said that autism was caused by differences in brain development very early in life. Rimland died in 2006, a decade before science provided compelling evidence that his theory was correct. Four research papers were published in 2017 and 2018, one in the esteemed journal Nature. All showed that infants who went on to be diagnosed with autism had brain differences in the first months of life. These findings directly refute the idea that the MMR vaccine causes autism, which is administered at the earliest when babies are 12 months old.
