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In a world where autism rates are continuing to climb out of control, an increasing number of aging parents of children with severe autism worry about who will care for their child and where their adult child will live once they are gone.
“It is a crisis for many individuals every day,” John Gilmore, the father of an adult autistic son, told The Defender. “In many places, even states with relatively good services, housing is only provided in emergency situations, such as when a single parent who provides care dies.”
Gilmore is a member of the Interagency Autism Coordinating Committee (IACC), a committee launched in January by U.S. Health Secretary Robert F. Kennedy Jr. The committee advises the federal government on issues related to autism.
Housing for individuals with severe autism is high on the committee’s priority list, Gilmore said. “It has taken longer than we expected to get the IACC moving, but it is now, and housing is probably the most important non-medical issue we are considering.”
At its first meeting in April, IACC recommended that federal agencies adopt the term “profound autism” to refer to people with autism age 8 and older who have little or no speech, require continuous or near-continuous supervision for safety, and need substantial help for daily living activities.
The IACC said it hopes that the adoption of one standardized term will pave the way for research and policies that benefit this subset of individuals with autism.
Roughly 27% of kids diagnosed with autism have profound autism, according to the Centers for Disease Control and Prevention (CDC).
Jill Escher, president of the National Council on Severe Autism and a mother of two adults with nonverbal profound autism, told The Defender that federal policy has historically failed to provide good-quality housing for people like her sons.
“It’s a tremendous crisis that continues to grow more serious year after year as the population of young adults ages up and as the parents become more infirm and pass away,” Escher said.
Only 12% of parents and caregivers of individuals with profound autism have a concrete plan for when they can no longer provide care for their child, according to a nationwide survey the National Council on Severe Autism conducted last year.
The survey, taken by nearly 1,300 parents and caregivers, also revealed that 65% of caregivers were ages 45 to 64.
Nearly half said they are still figuring out a plan for when they can no longer care for their child, and nearly a third had no plan at all.
‘No one else cares about them in the way that I do’
Those numbers come as no surprise to Brian Hooker, Ph.D., chief scientific officer of Children’s Health Defense (CHD). Hooker and his wife’s only child is an adult with profound autism who requires 24/7 care.
“We don’t know what our actual plan will be for him,” Hooker said in a recent CHD.TV interview with Dr. Andrew Wakefield. “We are working that out with fear and trembling, trying to figure out what the best trajectory for my son will be, you know, besides my wife and I living until we’re 130, 140 years old.”
Roughly 1 in 31 U.S. kids have an autism diagnosis, continuing a decades-long increase, according to the most recent CDC data.
Securing quality care and housing for the increasing number of adult children with autism is something that has never been fully addressed, Wakefield said.
That’s why Wakefield wrote “The Bequest,” his latest book, which launched June 26. The book, which Wakefield plans to make into a film, centers on the dilemma parents of a child with autism face when it comes to ensuring that their child is well cared for and loved after the parents’ death.
Wakefield told Hooker:
“This is one of the issues that plagues millions of parents across the country and around the world every night. Keeps them awake. What happens to my child when I die?
“Because when I’m no longer here, no one else cares about them in the way that I do, no one understands them, and indeed, no one loves them. And so what will happen?”
Parents of children with profound autism face incredible stress.
The divorce rate among parents of a child with autism is about 80%, according to a 2023 Psychology Today report. That’s more than double the country’s overall divorce rate, according to the CDC’s most recent data.
Some states, including California, provide parents with assistance, including in-home support services or compensating parents for caregiving, said Hooker, a California resident.
But those services tend to be lacking in states with little to no state income tax, said Escher, who also lives in California. “Texas offers nothing,” she said.
15-year waitlist now typical for group homes
Part of what makes California unique is the Lanterman Act, a state law that provides people with developmental disabilities the right to services and support.
Under the law, the state runs regional centers that support over 222,000 people diagnosed with autism, including around 47,400 adults age 22 and up, according to Jennifer Ayari, a public information officer for California’s Department of Developmental Services.
“In some cases,” Ayari told The Defender, “regional centers may provide specialized housing and residential support services to people with qualifying disabilities.” But those services are made available only “after other sources of services and supports have been exhausted,” she said.
Group homes are the typical alternative when parents or extended family are not able to care for the adult child — but they may have long waitlists.
Gilmore, who lives in New York, said a friend of his was just notified after waiting 15 years that a group home spot was finally available for the friend’s adult son with autism. “Waiting 15 years is typical now,” Gilmore said.
California’s Department of Developmental Services runs nearly 641 group homes with another 48 in development, Ayari said.
Still, Hooker said that number is “nowhere near sufficient” to meet the growing needs of this population.
Plus, California’s regional centers, which make the recommendations for where a person with profound autism should reside, typically favor at-home placements and recommend group homes only in cases of emergency.
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Group homes may not meet needs of adults with profound autism
Even when adults with profound autism manage to get into a group home, that is no guarantee that the place will be a safe and nurturing environment for them, Escher said.
“A lot of these group homes are not set up for emergency situations, and that becomes very, very difficult,” Hooker said.
Escher said that many group homes are influenced by federal policy that is “very drenched in ideology and wishful thinking about disability.”
The ideology assumes that people with disabilities, including those with profound autism, should live in the community. That typically means that group homes are placed in urban neighborhoods without a lot of yard or nature, she said.
Most group homes lack specialized amenities — including fences, gates, sensory equipment, swings, trampolines, hot tubs or pools — that people with profound autism need to keep them safe and happy.
Even though it’s likely that adults with autism would thrive in more rural, therapeutic environments, it’s nearly impossible for residents of some states to get that kind of housing and care for their child.
That’s the case in Pennsylvania, Escher said, which has a rule requiring group home placements for adults with profound autism. “They are not open to other alternatives.”
Gilmore said he thinks the housing situation for adults with profound autism is likely going to get worse before it gets better.
“The tsunami of young children diagnosed with autism in the 90s are now adults,” he said. “Their parents are getting old and starting to pass from the scene, and the taxpayers are going to start to learn how much of a subsidy those parents have been providing over the years.”
Related articles in The Defender
- RFK Jr.’s New Autism Advisers Set Sights on ‘Many Unanswered Questions’
- ‘Autism Tsunami’: Society’s Cost to Care for Expanding, Aging Autism Population Will Hit $5.54 Trillion by 2060
- ‘Honesty at Last’: CDC Says ‘No Evidence’ to Support Claim that Vaccines Don’t Cause Autism
- Who Will Care for Adults With Autism When Their Parents No Longer Can?
- As Private Equity Cashes in on Autism Epidemic, Kids End Up ‘Big Losers,’ Experts Say
