As the administration focuses on autism, many in the community say they need support, not a ‘cure’

By Amanda Musa, CNN

(CNN) — At a very young age, Maxwell Huffman knew that he absorbed the world around him differently than most of his classmates.

He was diagnosed with autism as a teenager, and nearly 20 years later, Huffman is an executive at Aspiritech, a Chicago-based nonprofit that works to find meaningful employment for people who have autism or are neurodiverse.

“If you gave me a button right now that I could press that said ‘you’re no longer autistic,’ I wouldn’t press that button, because I like who I am,” Huffman said. “I’m happy with who I am now.”

While studies show autism is becoming more prevalent, Huffman and other advocates don’t necessarily view that as a bad thing.

“Children with autism, if they have the right support, access to medical care and therapies, they can have wonderful outcomes,” said Lisa Ackerman, executive director of the Autism Community in Action, a grass-roots organization that offers education and support to thousands of people with autism and their families.

This sentiment contradicts comments on Monday by President Donald Trump, who called autism a “horrible, horrible crisis” as he linked the use of Tylenol during pregnancy with a “very increased risk of autism,” despite decades of evidence that the over-the-counter pain medication is safe.

The president’s claims are raising concerns among some people with autism and their loved ones, who say his remarks cast blame on mothers, re-stigmatize those with autism and ignore the support needed for families and individuals dealing with autism.

Others in the community have expressed optimism at the US Food and Drug Administration’s move to approve leucovorin, a cancer drug, for treatment of autism in children.

Ackerman says her son, 28, has been taking the medication since he was 5. “It helped him in cognition, speech, sleep, irritability and anxiety,” Ackerman told CNN.

Now, she hopes the drug can help others who are struggling to find support.

What is autism?

Autism spectrum disorder, or ASD, refers to a broad range of neurodevelopmental conditions characterized by challenges with communication and social skills. People with autism “may behave, communicate, interact, and learn in ways that are different from most other people,” according to the US Centers for Disease Control and Prevention, and “the abilities of people with ASD can vary significantly.”

US Health and Human Services Secretary Robert F. Kennedy Jr. has previously pushed the idea that autism is “preventable” and part of a “chronic disease epidemic” that “destroys” children and families.

Trump has said researchers have to move quicker on finding the causes of autism, and Kennedy said all agencies under his leadership will be researching the issue.

But experts say there are thought to be multiple causes of autism — primarily genes and environmental exposures — and the science showing a connection between autism and Tylenol is not settled.

Earlier this year, Kennedy called the rising rate of autism in the country an “individual tragedy” and “catastrophic for our country” after the release of a CDC report that found autism rates in 8-year-olds in the US rose from 1 in 36 in 2020 to 1 in 31 in 2022. Experts attribute this rise to factors such as broadened definitions of autism and increased screening efforts, especially among younger children.

“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 has said.

Huffman rejects this rhetoric, calling it an oversimplification. Rather than seeing autism as a deficit, it should be viewed as an untapped superpower, some advocates say.

“I’m sure a lot of people would would meet me, and they wouldn’t automatically notice all the challenges that I face,” Huffman told CNN, noting that his autism is “less severe” than others in the community.

“The human brain is complicated,” says Tara May, the CEO of Aspiritech, where Huffman works, and the mother of two children on the spectrum.

“Autism is one really important subset of a wide range of neurodiversity,” May said, noting that it often overlaps with mental disorders such as attention-deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD).

“Mental health is an important piece of our happiness, our productivity and our way of existing in this world,” May added. “Any approach we take to recommendations on physical health or mental health, they need to be rooted in science and taken from a place of kindness for others.”

New medication brings renewed hope

The medications approved by the FDA to treat symptoms of autism are limited, bringing parents more limitations, Ackerman says. Two antipsychotic drugs are approved to treat irritability associated with ASD, but both come with a black box warning about safety, and neither addresses the underlying medical issues presented with autism, according to Ackerman.

A new medication recently approved by the FDA, leucovorin, is an addition Ackerman is optimistic about.

“It’s a tough conversation for anyone to talk about a child who has needs,” Ackerman said. “Perhaps they’ll have hope and maybe be inspired to talk to people and have hope that there’s a new treatment that can impact positive outcomes for individuals with autism.”

The medication — a high-dose calcium folinic acid — is typically used to treat cancer patients during chemotherapy but has been used off-label to treat other conditions, including symptoms of autism. Some studies have shown a potential link between autism and low brain levels of folate, a B vitamin found in many foods like in leafy greens, nuts and eggs, but more clinical trials are needed.

Leucovorin wouldn’t be a cure for autism — and many people in the community say they wouldn’t want one in the first place.

“A lot of people, myself included, feel like there doesn’t need to be a cure, at least not for every form of autism that exists,” Huffman said. “I think there are plenty of people that feel like it’s a beneficial difference for them, and it makes them who they are.”

Anne Murray, who lives in Kentucky, says leucovorin has had positive effects on her son with autism but adds that she believes the government should be providing more support to families.

“If you care about these kids, provide them the food that they need, provide them great insurance coverage, provide them with therapies that are being reimbursed,” Murray said, noting a lack of therapists in her state who work with people on the spectrum.

Is this a setback?

Advocacy groups over the years have worked to raise awareness to help parents and others understand what their child might be experiencing and seek out a diagnosis.

Diagnosing autism is easiest in children who need more support, experts say. Like Huffman, some kids with autism don’t need as much and might continue to meet developmental milestones until age 8 or later.

In the 1990s and early 2000s, Huffman’s mother began researching autism in an effort to better understand her son.

“I remember the day when I found some of the book that she was reading about autism,” said Huffman, who was formally diagnosed at 16. “I remember saying to her, ‘Is this what I have? Is this me?’ Because everything I was reading made sense.”

Huffman says his mother’s willingness to learn and talk about his diagnosis helped him learn to love his differences, not hate them.

But some experts say recent discussions surrounding autism will set the US back at least a decade, to a time rife with damaging stigma around autism that the community has fought hard to change, according to Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, one of a group of leading autism advocacy organizations that released a joint statement about Kennedy’s comments earlier this year.

Kennedy “set up this litmus test of what it is to be a person and have a valuable life,” said Gross, who has autism. “It’s not acceptable to talk that way anymore because of the work that we’ve done.”

Lissette Pedreiras, who lives in New Jersey with her son with autism, says the Trump administration’s rhetoric on autism and Tylenol taken during pregnancy is dangerous from the perspective of an already overwhelmed caregiver.

“Now we have an administration saying that it was something we did. And mind you, I never took Tylenol while I was pregnant,” Pedreiras said.

A lot has changed since his diagnosis, Huffman says, but he is worried about what’s to come for his community.

“This has all the trademarks of a rushed conclusion to a very complex issue, which might cause far more harm than good,” Huffman said.

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CNN’s Lily Hautau, Nayeli Jaramillo-Plata and Gordon Ebanks contributed to this report.