Another news article about expensive, experimental autism treatments showed up in my feed this weekend—this time in the British paper, The Guardian.

Over the years, I have read dozens of stories like it. Different families, different “miracle cures,” different groups of professionals or pseudo-professionals pushing it, but essentially the same. Each time, some individual, group, or company is pushing an untested intervention that will cure autism. They prey on desperate families who have insufficient supports for their high-needs children, teens, or adults, who are willing to do anything—and pay any price—to help their loved one.

I have seen individuals push all sorts of cures, such as hyperbaric chambers, expensive chiropractic interventions, bleach water, and even açaí berry juice. Some of these interventions are harmless, some potentially deadly. Some are relatively inexpensive, some cost tens of thousands of dollars—but they all share the common theme of claiming to help cure autism. Then, when it has played out, they move on to some other scheme.

Relaxed Protocols Have Enabled Experimental Autism Treatments

This time around, Robert Kennedy Jr., the United States Secretary of Health and Human Services, has relaxed scientific protocols and standards, allowing for experimental treatments to be administered legally in the U.S. The latest “miracle cures” are stem-cell treatments, given to autistic children, many of whom are nonspeaking, and some as young as 18 months old. Children are restrained or given sedatives, and then the stem cells are injected into their bodies with the promise that it will help improve language and social skills, and reduce problem behaviors. The promised effects are more likely, families are told, if they do repeat treatments, so some cash out their retirement savings or take on second mortgages to afford them.

Is this a good investment? Are stem cells a safe and effective treatment? We don’t really know because this treatment has not been fully researched. But since RFK Jr. has given his blessing and relaxed protocols, we are seeing scientific trials administered in real time, on real people, who may or may not be able to communicate how they feel or give any kind of informed consent.

Exploitation of Vulnerable Populations in Medicine Is Not New

Kennedy may be taking us back more than five decades to the Willowbrook State School era, where disabled children were purposefully given hepatitis A and B from 1956 to 1972. Those children were used as human subjects to allow scientists to study how hepatitis progressed in the human body, and then develop effective vaccines. One of the goals of these current stem-cell trials seems to be to study how they may be used to treat other conditions. So let’s call this out for what it is: state-sanctioned medical testing on vulnerable, disabled populations for the potential eventual benefit of others.

This is exactly the kind of thing that other autistic advocates and I feared when RFK Jr. promised in April 2025 to find a “cure” for autism. In that speech, autism was depicted as something preventable that “destroys families.” Autistic people were described as individuals who would not be able to do things like date, play baseball, write poetry, use the toilet, hold a job, pay taxes, etc. Instead of sharing some of the most challenging aspects of the autistic neurotype and identifying ways that these individuals and their families could be better accommodated and supported, he characterized the autistic community as drags on society who have nothing to contribute in a capitalistic economy. In dehumanizing autistics in this manner, he opened the door to the option of using us, once again, for human experimentation.

One of the biggest tragedies is how desperate families are being convinced to not only give their consent, but their financial assets, to participate in these studies. They are literally paying scientists to make their children human research subjects.

The Guardian highlighted how families of high-need autistic children in the US feel abandoned—because they are essentially abandoned by the system, and often left to fend for themselves. Families are often given lists from psychologists or pediatricians of needed treatments, interventions, educational supports, and sensory tools, only to find out that their insurance will not cover them. Even those who have good insurance often find that needed services and equipment are not available. It’s no wonder they are desperate to find a miracle cure.

After RFK’s speech last year, many autistic self-advocates were appalled and fearful, but many families whose children fall into the level 3 category (those needing very substantial supports) were relieved that someone in a position of power was finally talking about their struggles. The problem is that these individuals and their families don’t need untried, expensive treatments; they need affordable therapies, respite care, and adequate accommodations that they don’t have to fight for. To reference Dr. Stephen M. Shore, they need the 4 As of autism: awareness, acceptance, appreciation, and action. What we also need, Mr. Kennedy, is for you to remember that autistic people are human beings, not lab rats.