In 2009, Sarah Palin told Barbara Walters that when amniocentesis showed a Down Syndrome diagnosis on her fifth pregnancy, the then-Governor of Alaska considered abortion as an option. But a split second later she rejected the idea out of an “understanding that every child has purpose. There is destiny for every child.”
At Monday’s press conference on autism, President Donald Trump offered a different view. Instead of acknowledging that all children have a purpose and destiny, he villainized children with autism. Flanked by Secretary of Human Services Robert F. Kennedy Jr. and Administrator for Medicare and Medicaid Services Dr. Mehmet Oz, Trump spoke about seeing a child with autism.
“It was so, so terrible,” Trump said. “They got the shot and the kid is…(pause) badly hurt—let’s be nice—badly hurt.”
The entire press conference was excruciating to watch for people in the medical profession, for relatives of Kennedy, and for anyone who loves someone with autism. I fall into the last category. My nephew Max LaZebnik was diagnosed in 1994 at the age of four.
His parents took action, seeking out experts in the field, including Lynn Koegel, who is now a clinical professor at Stanford Medical School. Not all children with autism respond to behavioral therapies, but slowly and with hard work, Max developed communication and social skills. Today, he is 34, lives in the Pacific Northwest and is an artist, currently working on a graphic memoir for Miniver Press.
I called Max to get his thoughts on the latest news. Max was non-speaking as a small child but has since become an eloquent advocate for his community. This is what he had to say:
NS: A member of the press quoted The American College of Obstetricians and Gynecologists who said Tylenol is safe for pregnant women. Trump responded, “That’s the establishment. They are funded by lots of different groups, and you know what? They may be right.” How do you feel about the president’s “my feelings count more than facts” attitude?
ML: First of all, it’s extremely dangerous to promote conspiracy theories over scientific facts. But honestly, I think that’s largely why Trump chose RFK, because they both favor conspiracies. RFK Jr.’s views don’t come from science, but from a grift from Dr. Andrew Wakefield who falsified the facts and promoted the bogus theory that vaccines cause autism primarily because he wanted to get money out of the pharmaceutical industry.
NS: One of the doctors at the press conference described having autism as “brutal.” Do you feel like it’s “brutal” to be a person with autism?
ML: No, I do not. Because a lot of us with autism have so many abilities. I consider it more like a personality trait, almost like being LGBTQ. What we need more than anything else is acceptance. We tend to get treated very badly because people can’t accept us for who we are. That’s largely what causes the ignorance in autism and neurodiversity from RFK, Trump, and the rest of the anti-vax community. And it’s offensive. It’s like they’d rather people die from measles than be autistic.
NS: How is the rest of your community feeling?
ML: I think our community is united. Most people I know on the spectrum are really kind, huge-hearted people, who just want to be accepted. We may be different, but we’re not less by any means. We’re just wired differently.
NS: You were mainstreamed as a child, which is now somewhat controversial. What are your thoughts on that?
ML: My parents tried to mainstream me as a kid because they wanted me to be happy. They wanted me to be able to communicate for myself and stand up for myself, and all those things. I was in therapy a lot as a kid, and I gained a lot of skills, but I felt like I was being turned into somebody who I didn’t exactly want to be and that was difficult. I’m still a work in progress as we speak.
NS: If you could talk to Bobby Kennedy, what would you tell him?
ML: First of all, to say the obvious, vaccines do not cause autism and Tylenol doesn’t cause autism! Secondly, I would tell him to step aside and resign. He should also learn that people with autism don’t need to be cured. They just need to be loved and accepted. It’s really the acceptance that makes us shine more than anything else.
I said goodbye to Max then texted his last beautiful sentence to my sister. She sent back a proud emoji with tears. Then, since she’s the mother of a child with autism, I texted her a particularly irksome quote from Kennedy.
“Some 40% to 70% of mothers who have children with autism believe that their child was injured by a vaccine,” Kennedy said. “President Trump believes that we should be listening to mothers instead of gaslighting and marginalizing them like prior administrations.”
“Thoughts?” I pinged my sister.
“I am a mother of someone with autism and I believe in science. I do my research, talk to doctors and researchers, and trust only the people who base their information on replicable and peer-reviewed studies,” she wrote back.
The post Opinion: My Brilliant Nephew on RFK Jr.’s Lies and What People With Autism Really Need appeared first on The Daily Beast.
