‘Being autistic doesn’t make you less human’: Some Spokane parents with kids diagnosed with autism worry about RFK Jr.’s comments

Last November, Brooke Littlefield’s 3-year-old son, Jack, was diagnosed with autism

Just four months later, she now fears that diagnosis could make him a target.

“When we were trying to get him diagnosed, we wanted to get him services he needed. But since the election, sometimes I regret getting him diagnosed. Because it could put him on a list somewhere, and it makes me scared,” Littlefield said.

Last week, Health and Human Services Secretary Robert F. Kennedy Jr. announced the creation of a national autism registry aiming to find the causes of the condition and aid research. Days later, the agency denied the platform would be a “registry” but said it would “leverage large-scale data resources and foster cross-sector collaboration,” according to a Friday statement.

Many autism advocates criticized the announcement because of its lack of details around patient privacy.

“The use of registries and registry data in general can be a valuable tool in helping to understand the causes of diseases and disorders, but in this case, the lack of clarity around how data will be collected, shared, maintained and tested for accuracy raises red flags,” the Autism Science Foundation said in a statement.

Northwest Autism Center founder Dawn Sidell said a registry is “not necessarily a negative.” But she worries how data could be collected and used.

“It is good to know how many individuals there are with autism so we can make projections about where to put funding and support. But adherence to ethical and privacy guidelines are essential. I understand people’s concern because we’ve learned some pretty valuable lessons over the decades about safeguarding privacy when we collect data.”

In the announcement of a plan to discover the cause of autism by September, Kennedy said the condition “destroys” families and children. Kennedy also claimed autism was a disease he aimed to cure and suggested it was caused by “environmental toxins.”

“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 last week.

While she does think searching for the cause of autism could be helpful, Sidell wishes the focus was on how to improve services, rather than finding a cure.

“There has been research into causes of autism as long as I can remember. But I would like to see an equal, if not predominate focus on how we provide services and support. And on that we are sorely behind,” she said.

At Spokane’s annual autism walk last weekend, Adam Littlefield put it more bluntly.

“There is no cure. You’re not curing autism. You’re not curing ADHD. It’s just who you are. That is a waste of time and money,” he said.

Also at the autism walk, Spokane resident Jamie Sanders said Kennedy’s comments are “just making it worse” for autistic people facing stigma. Sanders’ 18-year-old son is nonverbal and requires care. But even though he is not able to live independently, he is still capable of living a fully realized life, she said.

“Comments like that make people look at my son and think he needs to be cured. Obviously he’s different, but I feel like we should celebrate those differences, rather than making people feel bad for it,” she said.

Sanders worries Kennedy’s rhetoric might pave the way to a return to mass institutionalization – when people with autism and other neurodivergent conditions were automatically placed into an institution away from society.

“I wonder what they would do with a registry. Could they track those people down? I feel like we’re heading back in time with institutionalization. That’s a fear of mine,” she said. “That is not a life. My son wouldn’t get to go to school. They don’t get to be around other people. They don’t get to be outside.”

A ‘typical boy’

Monday afternoon, Jack Littlefield chased after a bubble, excitedly flapping his arms behind him – a common form of stimulation many children with autism use to self-regulate.

Jack is a “typical boy,” his mother says. He likes cars and being outside and physical humor. Just shy of turning 4 next month, he also can read, write letters of the alphabet and do simple math. Littlefield worries her son “might be a little bored” in kindergarten.

But Jack also struggles to communicate with his peers and even his parents.

“He knows a ton of words. He just chooses not to use them,” she said. “He doesn’t communicate his wants and needs even though he knows the words to get those wants and needs met. He can’t say. ‘I need a diaper changed’ or ‘I’m hungry’ or ‘Somebody hurt me.’”

Littlefield and her husband noticed Jack’s lack of communication when he was 18 months old. It took more than a year-and-a-half to get an autism diagnosis. In speech therapy the past three months, Jack’s communication has drastically improved, but it remains unclear what level of support and services Jack will need as he grows to adolescence.

Littlefield, who also has autism, sees a lot of herself in Jack and hopes his communication will improve as hers did. But she worries the stigma of an autism diagnosis may grow alongside him.

“Any sort of negative messages that your kid gets pounded into their head is never going to be great for them growing up, but my biggest worry is his safety. Some of the rhetoric I’m hearing is dangerous and scary to me,” she said. “Being autistic doesn’t make you less human.”