My Son and I Are Autistic. This Is Why RFK Jr. Is Improper About Us (Unique)

After I first heard RFK Jr. say “autism destroys households” and that autistic folks would by no means pay taxes, play baseball, go on dates, write poems, or use a bathroom alone, I simply rolled my eyes. It was simply one other outrageous remark in a political second already overflowing with misinformation and concern.

However the extra I sat with it, the heavier it felt. “They’ll by no means pay taxes” wasn’t only a careless line — it signaled that human value is determined by productiveness. And when that message comes from somebody with the ability to form public coverage, it’s not simply offensive — it’s harmful.

I’m an autistic incapacity advocate, a mum or dad to an autistic baby, and a speech-language pathologist who focuses on autism evaluations. RFK Jr. has by no means met a household like mine. We have now our challenges, however we’re not damaged or tragic. We’re constructing one thing robust, trustworthy and good. Autism hasn’t torn us aside; it’s helped us perceive and join extra deeply.

It’s by no means felt like a tragedy that my son Kam and I are autistic. When he was recognized two years in the past, I instructed him fortunately — and with donuts — and let him determine if, when, and the way he wished to share it. Kam is joyful, curious, and wildly passionate concerning the issues he loves. He can let you know greater than you ever wished about King Cobras or Peregrine Falcons, and he loves constructing elaborate worlds in Minecraft. He feels deeply, loves fiercely; in flip, he’s beloved simply as fiercely by his family and friends.

Kam additionally finds consolation in routine and has excessive connection wants, and interesting with me is each his deep curiosity and his manner of staying regulated. Even simply whereas penning this, I’ve answered dozens of his questions and co-regulated him by two near-meltdowns.

That fixed interplay usually leaves me dysregulated, which is what initially made me start to query my very own neurotype. When my mother mentioned, “He can’t be autistic — he’s identical to you,” it clicked that I used to be most likely autistic too. That is what led me to pursue my very own prognosis.

None of that’s detrimental. So why does RFK Jr. make detrimental sweeping generalizations about autism?

Not all folks with autism are the identical. It is true that some autistic youngsters require fixed care, could by no means communicate (which is totally different from not speaking), or have interaction in self-injury. Whereas some autistic folks could not reside independently or meet conventional milestones, many do. We exist on a spectrum at totally different ranges of functioning.

And it would not outline an individual’s value. These youngsters deliver connection, which means, and worth to the world. They deserve dignity, safety, and to be spoken about with respect — not as burdens, however as human beings with inherent value.

What actually “destroys” or threatens households of autistic youngsters is the shortage of assist and understanding. Many navigate each day challenges with out entry to therapies, respite, or acceptable training. Others watch their baby battle. They’re caught on waitlists, uncertain the place to show, unable to afford care. These households are being failed by methods that make them struggle for each little bit of assist. That is the place our advocacy must be centered.

Analysis issues — however not the type pushed by fear-based or pre-determined narratives. We’d like research that discover co-occurring medical circumstances and their efficient therapies, enhance understanding of affirming therapies and psychological well being helps, and broaden entry to each.

We’d like analysis that builds communication, regulation, and well-being. We’d like funding for respite, inclusive training, and methods that meet households the place they’re. It is not about being anti-science; it’s anti-stigma. And it’s about pushing for significant, inclusive progress.

My household is lucky. We have now entry. We have now assist. However many don’t. And but, as a substitute of investing in providers, training, or caregiver aid, RFK is spending time and vitality attempting to stop autism.

RFK’s fixation on a single environmental “trigger” ignores many years of genetic analysis — together with twin research exhibiting excessive heritability, and diverts assets away from what really helps households.

He overlooks well-established details: The proportion of individuals with mental disabilities within the common inhabitants isn’t rising, and grownup autism diagnoses are growing quicker than youngsters’s. This means that autistic people have at all times been current; we’re simply now higher at figuring out those that have been beforehand missed, particularly in marginalized and under-resourced communities. 

Sure, autism prevalence is growing. It’s at present estimated at 1 in 31 youngsters within the U.S., which is simply over 3% of the inhabitants. For comparability, the prevalence of different neurodevelopmental circumstances like ADHD, communication delays, and studying disabilities ranges from 10–20%. For my part, autism diagnoses will proceed to rise — not as a result of there are extra autistic folks, however as a result of many are nonetheless preventing for entry to evaluations and professionals who perceive greater than outdated stereotypes.

Statements like RFK’s aren’t simply unsuitable — they’re dehumanizing. They provide energy to ableist narratives that strip autistic folks of dignity — and shift blame onto dad and mom. Simply yesterday, somebody instructed me I had “broken” my baby, that autistic individuals are “damaged,” and that I had “murdered the kid I may need had.” That is the real-world influence of rhetoric like his.

Autism introduced me to my profession, my advocacy, and my group. It gave me deeper friendships, stronger household bonds, and a clearer understanding of my son. I desire a world that makes house for all minds, the place individuals are valued not for his or her productiveness, however just because they exist.

For too lengthy, autistic folks have been ignored, spoken over, dismissed, or instructed we’re talking the “unsuitable manner.” RFK is doing this on a nationwide stage. However he must know: We aren’t one story. We aren’t a tragedy. And we’re not going away.

Observe: I don’t communicate for all autistic folks or all dad and mom of autistic youngsters. Each expertise is totally different. However I hope this helps you see one other aspect of the story.