Any child needs food, water, clothing, warmth, and love. Any family must provide for those needs. But children with autism spectrum disorder (ASD) may need resources that other children do not. And that can add to the cost the family must bear.

When researchers estimate the cost of autism, they often focus on metrics like how much school districts have to pay for specialty teachers or how much counties have to pay to care for their residents. While these metrics are important, they don't tell the whole story.

Families are often left with expenses involving insurance, private care, and adaptive tools. They may also face reduced income due to loss of work.

Understanding costs shouldn't discourage families. Knowledge, in this instance, certainly represents power. The more you know about the costs ahead of you, the better you can plan for what is coming.

Who Pays the Bill?

When researchers dig into the cost of autism, they look into metrics that may not matter to families affected by autism. The information is certainly interesting, and it can be valuable to families trying to make sense of the impact a diagnosis will have on a community. But this data may not help them with kitchen-table budgeting.

In 2012, Autism Speaks found that society paid $2.3 million per person impacted with autism and an intellectual disability. The disability component was critical. When people had ASD but no real disability, the lifetime cost dipped dramatically. But when there was a disability involved, the cost was high.

It's reasonable to suspect that medical care would represent the largest amount of the cost. But researchers found that nonmedical expenses racked up the highest fees, including:

  • Intervention services.
  • Special education.
  • Child daycare.
  • Residential placement for adults.

In this study, researchers found that parents of children with ASD didn't pay more out of pocket than those without the diagnosis. That finding doesn't mesh with earlier research in which parents of children with ASD faced significantly more expenses than those who didn't have this issue. But researchers felt that changes in insurance were responsible for the difference. Now that more insurance companies are paying for care, perhaps parents are paying a smaller portion of the bill.

But other organizations remain concerned about the price parents pay to care for their children. The Autism Support Network says, for example, that parents are often forced to choose between financial security and paying for care for their children. Some are even forced to give up assets or face bankruptcy.

Costs Your Family Might Face

Every child with ASD is different. Each person has needs, hopes, dreams, wants, and challenges. The best treatment for ASD is individualized and made to help that person succeed in the world. As a result, making blanket statements about costs is challenging. Each child might need something different. But in general, there are expenses that most families of children with autism might expect.

It's not uncommon for parents of children with autism to face expenses caused by:

Insurance. It's critical for children with autism to have robust health care coverage for both their physical and mental health concerns. Families without employer-sponsored health care have coverage options through the Affordable Care Act (ACA).

Coverage cannot be limited or denied based on preexisting conditions, including autism. You can check with your state’s exchange regarding coverage possibilities for autism treatment. Premium amounts will vary according to location, plan level, number of people covered, and the ages and tobacco use status of participants.

Intensive therapy. Insurance coverage should help you to pay for the treatment your child needs to do well in the world. But you may face added expenses, such as deductibles and coinsurance payments. It's not uncommon for parents to pay up to $25,000 per year for intensive therapy.

Missed opportunities. Some children with ASD can go to school, handle sports, spend time with friends, and more. The older they get, the more independent they can become. But that's not true of all children with ASD.

Impaired children may need their families to stay with them often, so they can navigate the world around them while feeling like they are ensconced in safety. Researchers say missed work opportunities represent the largest financial loss for families touched by ASD. That financial loss is hard to quantify.

Special equipment. Children with ASD may be able to navigate the world if they have a little help. Tools like iPads and noise-cancelling headphones can mean the world to them. But each tool can cost hundreds of dollars.

Targeted activities. Children with ASD may benefit from specialized activities with other autistic children, says the Autism Spectrum Disorder Foundation. That can include camps, swimming lessons, and social activities. These outings can cost hundreds each year, the foundation says.

Special learning opportunities. Raising any child can be challenging. But parents of children with ASD can be desperate to give their children an advantage so they can reach goals. That can mean some parents enroll their children in very expensive programs that can run $18,000 or more, reporters say.

Every parent faces a different budget, depending on what their child needs and wants in order to navigate the world with comfort. But most parents can expect a high bill at the end of each year.

Investing in a Child Pays Off

It's hard to think about paying more to help a child with ASD. Parents may feel upset or concerned about the sacrifices they have already made to help their children. Facing a financial impact can seem especially cruel.

It's important to remember that these expenses aren't really optional. Families can't choose to opt out of insurance, for example, and they can't eliminate a specific type of therapy because the cost is too high. If a child needs something to get better, most families are willing to make sacrifices to make that happen.

And that investment can pay off in time. Researchers found, for example, that families with children who engaged in therapy while younger than 6 years old spent $14,000 more in health-related costs. But as they aged, they needed fewer services like speech therapy and occupational therapy. In the end, these kids needed $19,000 less per year in services.

It can be hard to look down the span of a child's life and understand how one investment can have such a ripple effect. But clearly, it makes sense to invest in a child now. The future impact can be immense.

To help make budgeting easy, check out this online cost calculator developed for families of children with ASD.

References

New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in U.S. and Reached £34 Billion in the U.K . (March 2012). Autism Speaks.

Autism Costs Average $17,000 Yearly for Each Child, Study Finds . (February 2014). Medicine Net.

Parenting and the High Cost of Autism . Autism Support Network.

The Affordable Care Act and Autism and Related Conditions . U.S. Department of Health and Human Services.

Autism Insurance Laws . (March 2014). Autism Society.

The High Cost of Autism and Why It's Worth It . (June 2014). CNN.

The Cost of Autism Spectrum Disorders . (2014). PLoS One.

The Financial Impact of an Autism Diagnosis . Autism Spectrum Disorder Foundation.

A Cure for Autism at Any Cost . (September 2017). Spectrum.

Cost Offset Associated With Early Start Denver Model for Children with Autism . (September 2017). Child and Adolescent Psychiatry.