The parents of children with autism often have to cut back on or quit work, and once they reach adulthood, people on the autism spectrum have limited earning potential.
Those income losses, plus the price of services make autism one of the costliest disabilities – adding $2.4 million across the lifespan if the person has intellectual disabilities and $1.4 million if they don't, according to a new study published in the journal JAMA Pediatrics.
"We've known for a long time autism is expensive, but we've really never had data like this to show us the full magnitude of the issue," said Michael Rosanoff, associate director of public health research for the advocacy group Autism Speaks, which funded the research. "These are on top of the costs to care for a typically developing individual."
Jackie Marks knows the problem firsthand. The Staten Island, N.Y., mom has 13-year-old triplets, all on the spectrum and all with intellectual deficits.
Everything about their care costs more money, she says, from the diapers and wipes she still has to buy to the specially trained babysitters she has to hire every time she wants to go out. For karate classes, she has to pay for one-on-one lessons; the therapist helping with social skills costs $150 an hour per child.
"I enjoy my children immensely," Marks said. "I have a wonderful husband. That, at the end of the day makes it all worth it. But is it like a typical experience? No."
Marks quit her job with the state as a bank auditor to care for Tyler, Dylan, and Jacob. Her husband's job not only has to cover day-to-day needs, but he has to put away enough money to pay for both her and the boys after he retires. She hopes the boys will be able to work someday, but they'll never have the kind of earnings that will sustain them, she said, and will probably receive modest Social Security benefits once they turn 18.
Four things need to change to bring down the cost of autism for families and society, according to David Mandell, director of research for the Center for Mental Health Policy and Services at the University of Pennsylvania.
Adults on the spectrum need more job opportunities. There are many small success stories of individuals or small groups of people with autism who are employed, but "we need to be more creative about thinking about employment on a large scale," Mandell said.
Adult care must be improved so only people who really need expensive residential care get it, and everyone else can find support in their own community, he said. "I think in too many cases, these residential settings represent a failure of our society to provide community-based, cheaper options," he said. "More flexible, cheaper options would be a way to bring these costs down."
Families with autism need more opportunities to stay in the workplace. "Issues that face autism ultimately face all families," Mandell said. "If we had more family-friendly workplace policies, we might see substantial change in the way families were able to manage the work-life balance when they had children with (all kinds of) disabilities."
Society needs to take the long view, he said. Spending money diagnosing and helping young children on the spectrum will probably save money when they are older, by reducing disability and improving employability. "We often talk about the cost of care, and we don't spend much time talking about the cost of not caring," he said.
•Cost of supporting someone with an autism spectrum disorder plus intellectual disability: $2.4 million in the USA and 1.5 million pounds in the United Kingdom ($2.2 million in U.S. dollars)
•Cost of supporting someone with an autism spectrum disorder but no intellectual disability: $1.4 million in the USA and .92 million pounds in the United Kingdom ($1.4 million)