In America's Battle Against Autism, Families Like Eileen's Lead the Charge

Share and Follow

Watch Dateline’s episode America’s Autism Wars on Tuesday 30 September at 9.30pm AEST on SBS or SBS On Demand.

Dressed in a sage green onesie, 12-year-old Charlie gently pads through his home in Austin, Texas. He lightly taps his fingers, bounds up to windows like he’s discovering the view for the first time and clicks his tongue to his own rhythm.

Charlie needs around the clock care for his autism and is non-verbal. So, it’s a small miracle that he’s just asked for chips and pizza.

Through repetition and reinforcement in ABA (Applied Behaviour Therapy) Charlie has learnt to develop language and communication skills via an electronic tablet. His voice is not his own but a monotone, synthesised one which he’s now using to recruit anyone within earshot to help him raid the pantry.

A young boy with smudges of dirt on his face looks into the distance. He is wearing a t-shirt with a US flag on it.

Charlie has what’s known in the US as ‘level three’ autism and is non-verbal. Credit: SBS Dateline

“Before his (communication) device, he was screaming hundreds of times an hour. He had no way of communicating his needs,” says his mum Eileen Lamb.

Eileen says it’s given him agency and power to come off the sidelines of the neurotypical world and become an active player in it.

According to the World Health Organization, autism spectrum disorder (ASD) constitutes a diverse group of conditions related to the brain and the wide spectrum of experiences and needs.

Those different needs play out every day in Eileen’s home.

A spectrum of experience

“Both of my sons are on the spectrum. Charlie has what’s known as level three autism, severe. My son Jude is 10 and has level one autism, which is the mildest on the scale,” Eileen says.

“And then there’s me. Ten years ago, I was diagnosed with high-functioning autism.”

Jude says he feels like the ‘big brother’ in this family. He also says people don’t know he has autism.

“It sometimes makes me better at things. I got to go in the fifth grader lessons for math and I was the best one.”

It’s more complex for Charlie, who also has a condition called “pica”, an urge to eat non-edible items. At its worst, he tried to swallow objects including screws and rubber bands every 90 seconds.

This is partly why his bedroom is dominated by what Eileen calls a “baby jail”.

A woman is standing beside a large soft, grey structure, holding its zip.

Charlie’s bed zips all the way around to prevent him from leaving at night. This is partly to prevent him from eating inedible objects, as he has a condition called ‘pica’. Credit: SBS Dateline

“Most parents read a book and tuck their child in bed at night. I have to zip my child safety bed so he doesn’t kill himself overnight. I know this sounds extreme, but this is what we have to do,” she says.

One family. Two autistic children. Two different worlds.

In the United States, autism is described with three levels: level one is considered mild, requiring some support; level two, more noticeable difficulties, and level three, the most profound or severe, requiring constant supervision.

Australia also describes autism according to three levels, with the National Disability Insurance Scheme tailoring support based on a person’s needs.

That strategy, released in January this year, highlights that there isn’t a “universally accepted definition of autism” that captures all experiences.

“As with all people, every autistic person is unique, and has their own individual diversity, capacity, experiences and aspirations.”

As the definition of ASD expands, for the most powerful people shaping US health policy, answers about its cause have narrowed.

Debunked claims back in the spotlight

US President Donald Trump and his health secretary Robert F Kennedy Jr have revived debunked claims that routine childhood vaccines are linked to autism.

This week, they extended that link to the use of the painkiller paracetamol (popularly marketed under the brand name Tylenol in the US) during pregnancy.

“I want to say it like it is, don’t take Tylenol. Don’t take it,” Trump said at the White House.

The US Food and Drug Administration has recommended a cautious approach to the use of Tylenol during pregnancy.

Australia’s Therapeutic Goods Administration joined other global medicine regulators, clinicians and scientists in rejecting a link, saying scientific evidence shows “no causal link between the use of paracetamol in pregnancy and autism”.

The Make America Health Again Commission, which Kennedy is chair of, has promised to “[restore] science and research” into areas including “vaccine injuries” and autism as part of the ‘Make Our Children Healthy Again’ strategy.

“Autism destroys families, and more importantly, it destroys our greatest resource, which is our children,” Kennedy said in April this year.

A man in a dark blue suit sits behind a desk with a microphone. There are rows of people seated behind him

US health secretary Robert F Kennedy Jr has received criticism for his comments about autistic children. He has pledged to investigate the “causes” of autism. Credit: AAP / Sipa USA / Aaron Schwartz

He’s also tapped discredited researcher and vaccine sceptic David Geier to investigate possible links between vaccines and autism. In 2011, Geier was disciplined by the Maryland State Board of Physicians for practising medicine without a licence.

Kennedy has raised the ire of many by reviving long-debunked studies linking what he calls “environmental injuries” to autism.

Where did the debunked claims linking vaccines to autism begin?

Disgraced former gastroenterologist Andrew Wakefield’s 1998 study linking the measles, mumps, rubella vaccine to autism was eventually retracted by the medical journal when it was found to be fraudulent.

Subsequent studies have found no link between vaccines and autism. But Wakefield’s false claims led to a global scare resulting in plummeting vaccination rates and a rise in outbreaks of measles and mumps.

At the University of California, Los Angeles, Dr Daniel Geschwind runs his namesake lab and has spent decades studying autism.

His conclusion is that autism is overwhelmingly genetic. 

“About 80 per cent heritable. Around 95 per cent encompassed by genetic forms,” he says.

An older man in a white lab coat is speaking. His eyebrows are raised and his fingertips are pressed together. He is in mid-gesture.

Dr Daniel Geschwind oversees his namesake laboratory at UCLA. Credit: SBS Dateline

He doesn’t understand Kennedy’s focus on vaccines and other factors, saying the science is clear.

“That question has been asked dozens of times, in many study designs, across many countries. There is no association [between autism and vaccines].”

Geschwind is concerned about the direction of US health policy.

“I feel sad that the world has come to a place where credible science is being disregarded.”

Caught in the middle of this world of competing narratives are autistic people who each have their own unique expression of the condition.

Diagnosis ‘made my life make sense’

The expansion of how autism is diagnosed means some people are making big discoveries about themselves and their identity as adults.

“(Being diagnosed) made my life finally make sense after almost 30 years,” Lyric says on a break from their autism advocacy podcast.

Lyric is a US-based advocate and consultant who runs the Neurodivergent Rebel blog.

A person with dark brown hair sits on a low wall in a park. They are looking towards the camera and smiling slightly. In front of them is an ipad held by a tripod.

Lyric is an advocate in the “actually autistic” movement. Credit: SBS Dateline

Lyric says their autism includes hyperfocus, the ability to concentrate intensely for long periods. It’s a trait that’s bolstered their advocacy in championing the real-life experiences of those who identify as “actually autistic”.

“There’s unfortunately a movement of people that have been led to believe that autism is this separate entity from their child. That if they can somehow pull it out, there’s some kind of normal child that’s just hiding under all of this autism, but it’s this view that’s not very realistic or humanising,” they say.

They also feel strongly about Kennedy’s comments and potential health policies regarding autism.

“As an autistic person I feel I’m uniquely qualified to comment on RFK’s propaganda and anti-autistic bullshit he’s spreading today,” Lyric says.

Debate within the community

Lyric is opposed to what they see as efforts to “mask” and fit into a neurotypical world, including ABA therapy.

“ABA therapy is traumatic. It’s teaching autistic kids it’s not ok to be autistic,” they said.

Eileen, like Lyric, was diagnosed with autism later in life. She has a different take on interventions like ABA therapy.

“I’m not teaching Charlie to be normal. I’m teaching him skills that most people take for granted, like communication, like safety, self-care. These are things that he deserves,” she says.

A family sits together on a couch. In the back are a father and mother. Sitting in front, from left to right, are a toddler-aged girl and two young boys.

Families like Eileen’s are caught up in America’s autism war. Credit: SBS Dateline

“Autism is a disability. Even in the most accepting society, Charlie would still swallow screws. He would still run in front of cars. There is no making society safe for Charlie.”

As the spectrum of autism expands with each new diagnosis, at the heart of the ‘autism debate’ in the US are conversations about understanding, self-determination and support.

Meeting those diverse needs is now in the hands of the Trump administration and governments around the world, and watching on is a community growing by the day.

Correction: A previous version of this story incorrectly stated that Australia does not classify autism according to levels. The story has been corrected.

— With additional reporting by Phoebe Mcilwraith.