The Cost of Raising a child with Autism

August 01, 2018

The costs of autism strap many families

Dr. Thomas Frazier, PhD, of The Cleveland Clinc offers tips for dealing with expenses related to having a child with autism.

Katie Parsons

Parents struggling to care for a child on the autism spectrum have the stress of direct costs -- such treatments and therapies -- and indirect costs, like loss of income for parents who need to work less, or not at all.

Lisa, who lives in Orlando, has a son on the spectrum who will turn 18 this fall.

He is on five medications that must be taken twice daily that relate to ailments resulting from his autism spectrum disorder. Each year, Lisa pays out of pocket for his treatments and medication.

Her son has been on a waitlist to obtain a Florida Medicaid Waiver, which does not take income into account when offering government-supported funding, since he was 5 years old.

To make matters worse, Lisa says her job has a standard 37.5-hour week but she can only work between 25 to 30 hours a week in order to tend to her son’s autism-related treatments and needs.

“I’m thankful that my job has flexibility, but it has not been possible for me to work the same amount of time as my peers,” said Lisa, who asked that her last name not be used to protect her family’s privacy. “Autism definitely hits from both sides -- with the added expenses of treatments and less time to work to pay for it.”

Her situation is not unusual. A study in the journal Pediatrics found that mothers of a child with autism earn 56 percent less income on average when compared with moms who do not have a child on the spectrum.

I’m thankful that my job has flexibility, but it has not been possible for me to work the same amount of time as my peers. — Lisa, who has a son on the autism spectrum

Autism spectrum disorder is a broad range of characteristics that are not exhibited in typical childhood development that can affect social skills, speech, motor skills and more. There is no official cause and no cure.

A report released in April by the Centers for Disease Control and Prevention estimated that 1 in 59 U.S. children has an autism spectrum disorder, an increase of 15 percent from the study published two years earlier.

Findings published in Jama Pediatrics report that the lifetime cost for an individual on the autism spectrum is $2.4 million on average when an intellectual disability is involved, and $1.4 million when it is not. It is estimated that 40 percent of people on the autism spectrum also have an intellectual disability.

The organization Autism Speaks estimates that it costs $60,000 on average each year to adequately support someone with an ASD living in the U.S.

Cost obstacles often start before diagnosis.

“Many insurance plans do not cover evaluations. We are talking a cost of $700 to $2,000, just for the initial evaluation,” said Silvia Hierro, who has a son on the autism spectrum and is the founder of SOAK, a Florida nonprofit that focuses on raising awareness about autism and providing informational resources for families.

The fight for funding assistance continues from there, Hierro says, and the fact that each autistic child has custom needs for treatment makes it even harder. She says she’s found that self-funded insurance policies usually exclude everything related to autism treatment, thus starting a back-and-forth between families and insurers that can last the whole of childhood and into adulthood.

“The best example is a child who was born with a hearing problem, but later diagnosed with autism. The hearing problem has nothing to do with the autism but the insurance company will not approve speech therapy,” Hierro said.

The “spectrum” definition means that while individuals sharing the ASD diagnosis may have similarities, the neurological diagnosis is unique to every person. The developmental, social and sometimes physical disorder manifests in a variety of ways, requiring customized approaches to treatment and therapies.

For low-income families, Medicaid can cover the majority of costs, but Hierro says members of her group bemoan the lack of providers who accept Medicaid patients because the payout is so low. The wait list to obtain a Florida Medicaid Waiver is over a decade long, Hierro said. Families also have access to some services through the public school system for diagnosis and some therapies there.

Lorienda Crawford’s son with ASD was on the Florida Medicaid Waiver wait list for 17 years before recently receiving word that the cost of some of his services would now see some relief. He is 22 years old but will live with his mother, or another adult, his entire life, Crawford said.

His treatments and therapies caused a substantial hardship on household finances.

“We’ve lived in bad neighborhoods just to have a roof over our heads and still pay for his services. I’ve shopped at local food pantries and consignment shops. There has been a lot that has just had to go because his health and well-being was foremost,” Crawford said.

Rebecca Mayes of Palm Bay has a daughter with high-functioning autism.

Mayes says that the therapy approaches that help kids on the spectrum vary.

“Most insurance companies do not pay for Applied Behavioral Analysis, or ABA therapy, and for some children, it may be needed up to 40 hours per week,” Mayes said. She says that ABA sessions, which help ASD children learn social and behavioral skills, typically range from $80 to $150 per hour.

The cost of food is another area where autism families often take a financial hit.

“Most children on the spectrum are very picky or averse to certain foods. On the flip side, the child may not eat table foods and be on a liquid supplement and those run $10 or more for six bottles. They may last some kids a day and a half,” Mayes said.

Mayes, a speech pathologist, understands the importance of early intervention and continued behavioral therapy. But making that a reality is difficult for many families because of the cost. There are grants and resources available, but Mayes says that often if you accept one, you are ineligible for others. Insurance varies, but Mayes said it typically lacks.

“Each plan is different. No plans cover everything a family needs to parent a child on the spectrum,” she said.

Some grassroots organizations have arisen to help families with the autism resources they need, whether through grant programs or discounted services.

The Autism Society of Greater Orlando offers free or discounted programs to help families care for children with ASD. Some of the courses provided include autism support for parents and siblings, social skills groups for people with ASD between the ages of 2 and 30 and social events for ASD children and their families. There’s even an autism awareness training program for law enforcement officers that trains them how to recognize individuals with autism and how to respond and question them appropriately.

Susan Belcher is the founder of Spring Forward for Autism, a Brevard County based organization that recently started awarding grants of up to $2,000 for therapies or equipment to families of children with ASD. In the first half of 2018, the organization approved grant applications of more than $30,000.

“We know that something as basic as an analysis for diagnosis is a cost too large for many families, and that keeps kids from receiving the treatments and therapies they really need,” Belcher said. “We don’t think that should happen to families, or kids with ASD.”