When I was ten years old, my younger brother was diagnosed with “moderate to severe” autism, which changed our family’s life in a way that we could have never imagined.
Autism Spectrum Disorder is not an illness but a lifelong neurodivergence and disability that influences how autistic people interact with others and their environment, according to a National Autistic Society webpage. It is a diverse spectrum that represents a variety of life experiences.
Additionally, he was diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD), an intellectual disability and sensory processing disorder.
ADHD is a developmental disorder that is characterized by frequent inattention, hyperactivity and impulsivity occurring across multiple situations like school, home, work or with family, according to the National Institute of Mental Health.
While my family and I already knew that something was different about the way he saw the world, this diagnosis opened up an entirely new perspective for us.
The American Association on Intellectual and Developmental Disabilities defines
intellectual disability as significant limitations in intellectual functioning and adaptive behavior that originates before the age of 22.
This is often measured by an IQ test; a score of 75 or below indicates significant impairment.
Sensory Processing Disorder is when an individual has problems processing information from the senses, according to Columbia University Doctors.
For years, my brother’s inability to communicate his needs and frequent meltdowns were dismissed as him being a “late talker” and just a boy, from not only by our family and friends but also by his own pediatrician.
So while this diagnosis wasn’t a complete surprise, it was a jarring experience that shaped the way me and the rest of my family view autism.
Over a decade later, he has continued to struggle with his daily routine and exhibited self-injury and aggressive behaviors.
Instead of progressing to uplift and support autistic people as a society, it seems as if we have gone decades backwards.
Since President Donald J. Trump appointed Robert F. Kennedy Jr. as United States Secretary of Health and Human Services, autism has risen to the forefront of controversy with anti-vaxxers and medical misinformation.
On April 16, Kennedy spoke to the public at a press conference with incorrect and ableist descriptions of how autism is affecting the general population in the U.S., according to an April 23 PBS News article.
“(Fully functional autistic children) regressed … into autism when they were 2 years old. 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,” Kennedy said at the press conference. My brother, who has severe autism, played Little League baseball as a kid and can, in fact, use the toilet. These statements are extremely false.
“Most cases now are severe. 25% of the kids who are diagnosed with autism are nonverbal, non-toilet-trained and have other stereotypical features,” Kennedy said.
Not only are these comments factually inaccurate, but they are also incredibly dangerous to the rest of American society and the world.
While Kennedy’s description of severe autism symptoms may be accurate to what some families are facing, it is disrespectful for him to say that the majority of autistic children are exhibiting these symptoms when only a fraction of the 25% of the ASD community has these behaviors, according to the same PBS News article.
Growing up in a Christian conservative family, my parents were under the belief for many years that my brother’s autism diagnosis was a result of him receiving vaccines at a young age.
In 1998, a paper was released that described 12 children who received the MMR vaccine that later developed autism and led to a widespread myth about vaccines and autism — the paper was retracted and several studies negated this correlation, according to Johns Hopkins.
Daniel Salmon, a vaccinologist, said that parents with autistic children clung to this possible correlation to vaccines and autism because they were looking for timely answers, according to the same source.
Even though I also received vaccines up until the age of four and was never diagnosed with any disabilities, my family believed in the widespread conspiracy theory that vaccines were harmful and stopped me and my brother from receiving any more vaccinations until we were in our teens.
In addition to this belief, my church community told my mom that she had somehow “opened a door” or committed a sin that allowed my brother to become disabled as a curse.
Because my church believed in the ideology that God could not possibly make a mistake in his creation and that everything had a purpose, it was impossible for my pastors and parents to come to a logical conclusion as to why my brother is disabled.
Thus, he was frequently bullied and viewed as an outcast among other children in our community, despite my mom homeschooling him as my church promoted.
I remember our pastors and members of our church constantly praying that my brother would miraculously be cured and “healed” of his autism and if that didn’t happen, our family didn’t pray hard enough.
These religiously influenced beliefs and conspiracy theories are what drive Kennedy’s dangerous political propaganda on autism and medical misinformation.
Some of Kennedy’s strongest supporters are homeschooling far-right Christian mothers and “crunchy” home-schoolers, according to a Jan. 28 New York Times article.
Right before the COVID-19 pandemic, my family left our church community and discovered the truth about many of these unfounded theories on religion, medicine, the government and autism.
However, as my brother has navigated his early and later teenage years, his disability has created a plethora of issues at his public school and public support systems in place because of ableism.
Not only has he faced discrimination within our family, friendship and community, but ableism and the idea that he needs to be cured from his disability are even found in the public school system and support service programs.
In middle school, my brother faced teachers physically forcing him to stop stimming or focus on homework, which he was struggling with.
To this day, he still does not have a one-on-one aide with him at school despite my parents advocating for this with his psychiatrist and multiple therapists for years.
It’s only going to get worse for disabled students as Trump aims to dismantle the U.S. Department of Education.
There are currently 12,000 pending federal investigations into allegations of civil rights violations in schools — nearly half of those being disability related issues — which will likely not be finished as quickly because of staff layoffs, according to a March 12 NBC News article.
The review and distribution of government-funded research to assist and educate children with autism and severe intellectual disabilities is also diminishing because of the shutdown, according to the same source.
Many parents of children with severe autism have advocated for the “profound autism” label to differentiate their needs, creating a controversial divide in the disabled community, according to a Nov. 18, 2023 article by The Washington Post.
However, this is rooted in furthering ableism and creating more segregation of disabled students.
In order for autistic and neurodivergent people to thrive in the United States, we need legislation that supports and protects disabled people instead of creating more barriers for them.
One day, I hope there is a future where my brother can exist in peace without suffering from the systemic discrimination that is so prevalent in our current society against disabled people, knowing that he has a purpose and is more than just his disability.
