Babies don’t come with an owner’s manual.
Every parent has to figure out why their newborn won’t sleep, how to help their children navigate playground politics, and why their teens won’t hug them anymore. When they get stuck on these crises and dilemmas of parenthood, other experts, such as neighbors, aunties, and parenting influencers, can offer guidance.
Parents of autistic children have other concerns. Their kids might scream all the time, might never talk, or might hate loud noises. Autism parents have to learn how to parent a child with a different neurological system. Most of us figure it out eventually.
Learning how to support our unique kids is fine. We’re not complaining. However, the information learning curve, which means mastering the medical, educational, and government systems our kids depend on, is unfair and unnecessary.
In my work, I see five moments when parents get lost. The first comes right after the diagnosis. Most doctors deliver the news and say goodbye, leaving parents to figure out what autism means, what help exists, where to find it, and how to pay for it. In one recent study, nearly half of parents of newly diagnosed preschoolers had full or partial PTSD symptoms.
Then comes school, with its alphabet soup of IEPs, OT, PT, and BIPs. Adolescence follows, often the hardest stretch for our kids socially, with bullying and rising anxiety. Next is leaving high school, when families must choose a path, apply for benefits, and decide about guardianship. Finally, there’s adulthood, with questions about housing, work, relationships, and community.
At each stage, parents start over with new terminology, new professionals, and new programs.
Here’s what frustrates me most: the help exists. Insurance, including Medicaid, can cover 20 to 40 hours a week of ABA therapy for young children. Special education services can transform a child’s school experience when they’re done well. There are new college programs for students with autism and other disabilities.
At every stage of development, therapy and appropriate education can make a real difference in a child’s life, and government benefits and insurance coverage can help families cover huge expenses. But no mechanism connects parents to any of it.
Each agency understands its own piece, and nobody owns the whole picture except the parent. As a result, the system favors families with the education to decode it, the time to manage it, and the money to hire lawyers and consultants. Everyone else is left to figure it out alone.
It doesn’t have to be this way. We should simplify these systems, starting with the adult disability system, which can only be described as Kafkaesque. We need social workers in doctors’ offices, paid for by insurance, so that no family leaves a diagnosis without a guide. Communities should fund parent centers with qualified staff who can talk families through everything from IEPs to SSI. Congress should fully fund special education, so no family has to fight its school district for the right services. And we should pay autism parents for the extra caregiving role they take on.
Parents should be able to focus on their families, their jobs, and their own lives. Asking them to spend hours completing paperwork or scrolling through confusing online resources is cruel.
I’ll be sharing these ideas in a free online talk, “The Autism Learning Curve: The Lifelong Challenges of Raising a Child with Autism,” on Tuesday, October 13, at 7 p.m. Eastern, as part of the New York Society for Ethical Culture’s Speaking of Science series. Everyone is welcome. Details and RSVP here.
My goal, in that talk and in my work, is to raise awareness of these challenges until families no longer need people like me to navigate them. I want to put myself out of a job. Let’s fix things.
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