Our relatives have autism. This is how the government should help us.

Washington Post

09-05-2025

Programs to support autistic people who have high support needs are vastly underfunded. I would love to see the federal government do something about that, such as funding existing programs like TEACCH at the University of North Carolinaat Chapel Hill, as well as research methods to help these people and their families function better.
Our daughter has benefited greatly from the right medications and a service dog. She just turned 41, and her autism has affected our family in so many ways — good and not so good. There have been many years when it was very hard to afford her care, especially in the early going, when there was so little support.
Here in North Carolina, she receives support through a Medicaid waiver. It has been lifesaving for us, but the current wait time for those slots is 10 years. Want to help autistic adults? Fund programs like that!
Jan Boike, Matthews, North Carolina
Nix ABA
I've had close relatives with autism for the past 50 years. The policies families with autism need are greater support for interventions that are not based on applied behavior analysis, especially in public school and workplaces. ABA is a therapy that focuses on eliminating common autistic behaviors, often through aversion training rather than learning new skills. Because policies on which autism therapies and interventions insurance must cover vary widely from state to state, families might end up turning to ABA because it is the most affordable option, not because it is the best one. The heavy focus on ABA is tragic because it has been proved to traumatize some people with autism to the point that they develop post-traumatic stress symptoms.
Instead of promoting ABA, the Education Department should require guidance on how to accommodate neurodiverse students in schools so they can learn in a comfortable environment, not be trained to make neurotypical people comfortable.
We also need workplaces to offer accommodations such as flexibility in hours, remote work and sensory-friendly work environments. Some people with autism love detailed, repetitive work such as finding coding errors and organizing inventory, but they need support and understanding to be able to work. Inclusive education and employment is key to helping people with autism lead full lives.
Michelle Mood, Gambier, Ohio
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Prioritize autism funding
The government should prioritize policies to help support autistic people, including my grandson who is nonverbal. It should increase funding for teachers and programs to help families get the treatments that will benefit them.
The recent 180 from the government has been alarming. One of President Joe Biden's last acts in office was to sign a bill that provided funding for autism research. The current administration is cutting funding for autism research. And Health and Human Services Secretary Robert F. Kennedy Jr. said 'autism destroys families.'
I would like my government not to be cruel. That seems to be a big ask because our government is now run by people who seem to have no regard for families such as mine.
My grandson is not a burden. A society will always be judged by how it treats the most vulnerable. Our country is failing that test.
Karen Deal, Georgetown, Texas
Parents need schools' support
I have two sons, ages 17 and 20, who are on the autism spectrum. There are already many demands on insurance companies for autism-related treatments, including speech, occupational and behavior therapy. And, as a result of the Affordable Care Act, more kids are insured. However, parents need even more support. That support should be delivered through public schools.
Many parents cannot take enough time off work to attend the sheer number of medical appointments our children require, even when those appointments are covered by insurance. And many parents also lack private transportation and have to balance the needs of their other children.
But kids' transportation is already provided to and from school, and children are there most of the day. Therefore, a meaningful amount of speech, behavior and occupational therapy should be provided at school. To the extent that a child is a good candidate for video modeling, some, but not all, additional speech and behavior therapy could be cost-effectively provided through videos and interactive programs on a computer. A child might need the same lesson repeatedly, and a computer never gets bored.
Occupational therapy could facilitate a child dressing himself or using a pencil. Many elementary schools have a number of students who need this help, but they are not getting anything remotely adequate due to lack of funding.
Additionally, schools need more counselors, especially in middle and high schools. Many people on the spectrum, including my sons, have comorbid mental health issues and benefit from weekly counseling, but school counselors are often too busy, especially in the context of the teen mental health crisis, to provide the help needed.
Kids with autism need adequate services. We should all pitch in to make sure the burden of cost and time is not squarely on their parents.
Charity Bartell, Austin
Meet my family
Much of the discourse regarding Robert F. Kennedy Jr.'s ignorant and cruel remarks about autism lacks the full context of what it's really like. So, I would like you to know about my family. Indeed, I'd like to challenge everyone considered neurologically 'able' to go up against any one of my three autistic nieces and nephews, or their father (my brother), in a competition to solve an array of highly complex mathematics, computing or chemistry questions. I bet Team Douglas will win hands down.
If you'd like to experience honest love from people with a knack for comedic timing, there's no one better than my family. They will make you feel loved and understood.
I know that what I have portrayed briefly here are not the characteristics of everyone on the autism spectrum, but they are the qualities and dimensions of the autistic people I know and love, who amaze and challenge me intellectually and creatively.
Penelope Douglas, Sausalito, California
Misinformation fuels ableism and bullying
Robert F. Kennedy Jr.'s recent comments about autism were disconcerting. Instead of celebrating April as Autism Acceptance Month, Kennedy chose to disparage autistic kids like my brother, who are students in classrooms across this country.
Kennedy said, '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.'
His words are not only misinformed — my autistic peers do, in fact, hold jobs, play sports and have relationships — but also deeply dehumanizing. By suggesting that a person's intrinsic value depends upon arbitrary standards of social behavior and a narrow set of milestones, he encourages bullying and ableism in our schools.
Sadly, his rhetoric also fuels harmful stigmas around disabilities, stigmas his own family has fought so hard against. Eunice Shriver, Kennedy's aunt, founded the Special Olympics, and his cousin's son, Tim Shriver Jr., co-founded the 'Spread the Word' campaign, which combats ableist language in schools.
Put simply, Kennedy's comments hurt autistic kids like my brother and alienate families like mine.
Leela Uppaluri, Boston
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Families are overwhelmed
My son Daniel is 28. He was once verbal and perceptive, but at age 2, he regressed severely. We believe this regression was triggered by a combination of factors: a triple vaccine, a large dose of Rocephin for an inner ear infection and verified lead poisoning.
Our family's bloodwork showed elevated lead levels, and the county intervened — relocating us to a lead-safe environment after detecting dangerous lead dust throughout the house. The landlord had failed to notify us about the deteriorating lead paint on window frames and exteriors.
I also believe there is a genetic predisposition in our family. Three of my four children exhibit traits linked to sensory integration challenges, but Daniel's condition is the most severe. He is now nonverbal, is only somewhat toilet-trained and requires constant one-on-one supervision. He understands when he needs to use the toilet and wears Pull-Ups, even though he cannot clean himself after. What brings him joy is running forest trails with his father — sometimes logging up to 120 miles a month.
The federal government must recognize the full spectrum of people with autism, not just those who are verbal and self-sufficient. Families such as mine are overwhelmed. We need long-term care solutions, respite programs, and research that seriously considers environmental triggers, immune response and sensory disruption alongside genetic factors.
Given the lack of answers for families such as mine, I have spent decades developing a wave-based computer model that attempts to capture what I believe to be the cognitive dissonance that happens when Daniel's brain can't integrate the information from his senses in a synchronized way. It's shaped by my close observation of Daniel's repetitive, short-cycle behaviors and difficulty with sequence processing. That model is the lived effort of a father, through prayer and persistence, to reach his son. Daniel is why I do this.
America needs to fund bold, independent autism research and build policy around the daily realities of families such as ours. America's future depends on how we treat its most vulnerable.
Thomas Young, Cuyahoga Falls, Ohio