Dehumanizing People With Autism

The inaugural SOAPBOX column for The Crash Report.

Editor’s note: For those not familiar with the olden times, before the internet was invented, shipping boxes made of wood were commonplace. In those days, to share an opinion with fellow citizens, folks grabbed a wooden box, then headed to the town square. There, they’d flip the box, creating a portable stage to lift them slightly above the crowd of (hopefully) eager listeners. And then the speaker would spout wisdom — coupled with facts — to inform their neighbors of stuff they needed to know. The Crash Report’s version of the SOAPBOX is digital and appears monthly. Submissions by readers and writers should be non-wooden and between 1,000 to 2,000 words.

RFK’s rhetoric is dangerous and disgusting

by Leigh Jordan

My diagnosis of autism: Last year, after talking with some people, I decided to do some research and then found a qualified diagnostician who does testing. Over a 3-month period, after a series of in-person and online evaluations, the doctor determined that I have autism and ADD. And after the lies spewed recently by RFK, I came out to my family and friends with my diagnosis.

“Autism destroys families. And these are kids who will never pay taxes,. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.”

I've been working since I was a kid, mowing lawns and shoveling snow for friends and family. When I turned 15, I got my learner's permit and quickly decided I wanted my own car. So I got a job at B&A Variety in Turner, stocking coolers, running the cash register, cleaning the griddle, grill and floors during the closing shift. And now, at age 41, I've been working and paying income tax for 26 years.

I played sports in Leavitt Area High School and excelled at Phys Ed, graduating in 2002. Then I went on to Southern Maine Community College where I earned an associates degree in masonry construction.

I genuinely don't understand what the guy is talking about. While there are people with autism who struggle with some of the challenges he mentioned, they are NOT the majority.  At age 22, I met — and fell in love with — my now-wife. And with this wonderful partner, I've raised three boys. We own our own home and I have worked for the same yacht-building company for the last 13 years.

To be clear, I’m telling you all this just as a way to put in context how RFK’s statements were incredibly insulting to me and countless other Americans. 

Autism is something you can not cure. There is no evidence of autism being environmental. Autism is recognized by the majority of science as a genetic trait. Autism is built into the brain structure. Autism is a part of a person.

While it is insulting to hear anyone, let along a high-ranking government official, say the things RFK said, such words are also very scary.  I view his disinformation to be a form of eugenics. His type of rhetoric, for some people with autism, can be isolating. It’s already hard enough for people to tell the world about autism being a part of their person. It gets even more intimidating when faced with RFK’s lies.

RFK’s sort of speech can also influence how people view you when they discover you’re autistic. For patient people, that knowledge is a new way for them to understand you and your mannerisms.

But for the ignorant and impatient — especially those who revere RFK — that information might be interpreted differently. Some might show pity, for example, thinking you are child-like. (Which is also very insulting, even if well-meant.) Other MAGA-types might think a person with autism is just lying and using a diagnosis to get special privileges, which results in a loss of trust and respect. And some might just look down on you altogether, thinking, as they used to say, you are “subnormal.”

RFK and his cronies are very unqualified for their positions within DHHS. (No surprise, I guess, since that is a clear trend with the Trump administration.) Consider the case of David Geier, the man RFK hired to do a federal study to find a “cause of autism” before September.

Geier is known, in autism treatment circles, for various outlandish notions, including his promotion of disproven theories that vaccines cause autism. In 2011, Geier, who never attended medical school, was found guilty of “practicing medicine without a license,”after an extensive investigation by the Maryland State Board of Physicians, regarding Geier (and his father’s) treatment regimens for child patients with autism.

Also in 2011, the Board of Physicians, “de-licensed” Geier’s father, Dr. Mark Geier, after finding he “endangers autistic children and exploits their parents by administering to the children a treatment protocol that has a known substantial risk of serious harm and which is neither consistent with evidence-based medicine nor generally accepted in the relevant scientific community.”

Both Geiers have been discredited by the mainstream for their junk science, including their pushing parents to consider a $5,000 monthly regime of puberty-blocking medications, known as “Lupron Therapy” into children in an attempt to “cure” their autism. (Apparently MAGA people are okay with puberty-blockers when such meds serve their weird purposes.)

Dangerous treatments like this cause harm to children. Other quacks have tried many bizarre treatments, including using bleach (aka Miracle Mineral Solution), which causes incredible suffering for kids and their digestive systems. According to the Autism Science Foundation, there’s a long list of snake oils being marketed to parents of kids with autism. There are many techniques found NOT to have any discernible impact, including non-evidence based approaches like chelation, psychedelics, zeolite detox, secretin injections, nicotine patch therapy and drinking raw camel milk.

Some have even tried using hyperbaric chambers (boxes filled with 100% oxygen) with zero positive impact while operating under the unproven assumption that an oxygen-rich environment somehow improves language, social skills, eye contact and level of awareness of people with autism. And those hyping hyperbaric chambers as an “autism cure” are not properly trained which has resulted in disaster. This past January, at a Troy, Michigan “clinic” called “The Oxford Center,” a five-year-old boy died after the pressurized oxygen chamber he was in exploded. In March, the Michigan Attorney General arrested the owner and three employees of “The Oxford Center” and charged them with “Second-Degree Murder, a potential life sentence, or alternatively, one count of Involuntary Manslaughter, a 15-year felony.”

And The Oxford Center is still offering “Hyperbaric Oxygen Therapy” despite the boy’s death and the criminal charges.

I don't say these things for shock value. I worry that if RFK and his friends like Geier continue on their misguided path, we could be seeing the implementation of some very bad policies. Maybe even government-mandated treatments. Or worse, removing children from their families who don't agree to the treatments.

As I write this, RFK is working on launching a national autism registry. Using information from pharmacy records, Department of Veterans Affairs, the Indian Health Service and even smart watches, he intends to give this information to his chosen groups for “research.” Exposing this private information to hundreds of people is a clear violation of HIPPA laws, not to mention echoes Nazi-era tracking programs used by Hitler.

RFK has also pushed for (voluntary) wellness farms for people who have depression, which many autistic people also struggle with because of 24/7 “masking” and trying to fit into the non-autistic world. I worry these RFK schemes and programs could be expanded on and perhaps, ultimately, become involuntary. Or, at least, difficult to avoid or escape. And I worry that such governmental thinking could expand to similar treatment for other “mental disorders.” 

And, with former wrestling executive Linda McMahon as Secretary of Education, it wouldn't be hard for RFK to push his policies, through her, into American public schools. That’s in conjunction with the Trumpian push to slash special education budgets and to eliminate IEPs (individualized education programs). Both are critical for children with autism of all levels.

Again, I don't mean to scare you, but as someone who is autistic, and a family member to autistic people and a parent of autistic children, I truly believe we need to be vigilant and proactive in protecting vulnerable populations. The Trump administration has already made it clear they are willing to ignore court orders AND the rights of individuals — American citizen or not — provided by the law. As I write this, it’s still unknown how court orders will be enforced. 

Legalities aside, what RFK said was simply dehumanizing to people with autism. And, as history as shown, when governments dehumanize groups, it becomes easier to accept — or encourage — other marginalized people to also be mistreated. And the Trump administration has made it clear they are willing to dehumanize. They’re doing it with immigrants (legal and otherwise) plus the transgender community and others on the edges of our society.

Are people with autism next?

Leigh Jordan lives with his wife and kids in western Maine.