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With 6 million adults living with autism in the US and up to 100,000 individuals aging out of children’s services annually, financial planning has become one of the most urgent yet underdiscussed needs facing families affected by autism spectrum disorder.
According to Keith Wargo, CEO of Autism Speaks, families often focus intensively on childhood therapies and interventions but fail to adequately prepare for the lifelong financial realities of supporting an adult with autism.
“There’s a huge need, and oftentimes it is underresearched by families who are frankly in the moment, trying to work with their loved ones and children to get them the services they need,” Wargo said in a recent Decoding Retirement podcast. “So we think it’s really important to have this on the radar screen as early as makes sense.”
Families of children with autism face the dual challenge of saving for retirement while also planning for their child’s long-term care.
“We think it’s important for individuals to focus both on their own retirement and their own needs, as well as be thinking about their children’s needs,” Wargo said. “That can be challenging — that’s a lot to take on.”
Sometimes, “delaying retirement may be possible or unavoidable,” he added.
The key is preparation.
“We think the most important thing is to be informed and to really think about structuring and setting things up early,” he said. “It’s definitely more complex and more complicated, and it’s something we talk to individuals and families about all the time to help them understand the resources that are out there. But it’s definitely complex and daunting.”
Wargo recommended using a special needs trust to set aside money for a child with autism.
“Special needs trusts are foundational,” he said. “They’re a building block, and really every family should look into them. They should think about it early, probably as early as when their child is in their early teens.”
Wargo explained that a major shift occurs when a child with autism reaches adulthood. On their 22nd birthday, they are no longer eligible for school services, and support comes primarily from state programs, with Medicaid serving as the key funding source for medical care, employment-related services, and other resources.
He noted that the biggest mistake families make is waiting too long, followed by not understanding the consequences of gifting money directly. For example, if a well-meaning relative leaves a bequest or gives money outright to the child, that gift can disqualify them from government benefits.
“The trust is really important because it is one of the primary mechanisms to set up savings that will not have an impact on an individual’s ability to tap into government resources,” Wargo said.
A father and daughter sit on a sofa at home. (Getty Images) ·FG Trade Latin via Getty Images
Read more: How to open a savings account for a child
Families should work with a lawyer to establish a special needs trust, but Wargo stressed that the process is often more straightforward than many expect.
“It is a legal process, so there is an expense involved,” he said. “But what I have found is there are a lot of well-meaning and excellent lawyers who look at this as part of their mandate.”
Compared with other types of family trusts, special needs trusts are “a lot simpler,” Wargo said. While there is a cost, “generally, you find a lot of folks who want to support families and not have it be yet another burden on what already is going to be something that has to be managed through.”
He also pointed out that families don’t have to go it alone. Advisers and specialists are available nationwide, and Autism Speaks recently hosted five summits across the country where experts walked families through the process.
Another account that can complement a special needs trust is an ABLE account.
An ABLE account is a tax-advantaged savings account designed for people with disabilities that works much like a 529 college savings plan, according to Wargo. Contributions are made with after-tax dollars, and earnings grow tax-free if used for qualified expenses.
Unlike 529s, however, ABLE funds can cover a wide range of needs, including housing, food, transportation, and education. Annual contributions are limited (currently $18,000), but ABLE accounts allow individuals with disabilities to save and spend without jeopardizing eligibility for government benefits such as Medicaid or Supplemental Security Income (SSI).
“There are some regulations and rules, so it’s important that individuals educate themselves,” Wargo said.
Families often ask whether to choose a special needs trust or an ABLE account, but Wargo said the answer is usually both.
“If the resources are there to fund them, they should go side by side,” he said, noting that ABLE accounts offer flexibility with few restrictions, while trusts are designed for longevity and may impose limits on when and how assets can be accessed.
Long-term care planning is one of the most pressing and emotionally difficult issues facing families of children with autism.
Wargo explained that only a quarter of individuals with autism live outside the homes of their caregivers, and about half of those caregivers are over the age of 60.
He called the situation “one of the most difficult and heartbreaking and challenging needs” and stressed the importance of preparing early. That includes not only having financial tools like trusts but also building a broader social and legal support network.
“That can mean having a legal guardian, having letters of intent, and really involving trusted family members in the planning of what the future will look like,” he explained.
Read more: A step-by-step guide for retirement planning
Such steps ensure that “the best plan is there and can be implemented for the individual and with the individual’s input when that’s possible.”
Wargo noted that all the same considerations that go into general retirement planning — such as trustees — become even more critical in this context.
Madison Marilla, a volunteer for Autism Speaks, and her family attend the Netflix ‘Love on the Spectrum’ premiere on April 1 in Los Angeles. (Charley Gallay/Getty Images for Netflix) ·Charley Gallay via Getty Images
When asked for his single most important piece of financial advice for families affected by autism, Wargo didn’t hesitate: “No. 1: Start early.”
He acknowledged that the process can feel overwhelming, which is why it’s important to rely on your trusted network and put together a thoughtful plan.
“These are daunting processes,” he said. “It’s not what you’ll learn in a financial literacy class in high school or college. Some of the applications for government programs can be confusing.”
His guidance is to begin as soon as possible, learn what resources are available, and lean on experts and support networks.
“I can’t emphasize enough — there are some really great organizations and really great people doing this work, wanting to support and wanting to make sure that folks can have as much peace of mind and ease of mind as possible,” he said.
Got questions about retirement? Email Robert Powell at [email protected], and we’ll do our best to answer it in a future episode of Decoding Retirement.
Each Tuesday, retirement expert and financial educator Robert Powell gives you the tools to plan for your future on Decoding Retirement. You can find more episodes on our video hub or watch on your preferred streaming service.
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