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The Hefty Cost of Caring for Children and Adults with Autism

woman blindfolded grasping for moneyStory Highlights
  • Families of children with ASD bear a huge financial burden caring for their child.
  • A 2014 study reveals that the cost of caring for an individual with ASD over their lifetime is approximately $2.4 million.
  • If the prevalence of ASD continues to grow as it has in recent years, the economic costs will rise from $268 billion in 2015 to $461 billion by 2025.

According to the 2014 Health National Survey, 1 in 45 American children between the ages of 3 and 17 years old have autism spectrum disorder (ASD).1 It is one of the fastest growing developmental disorders in the U.S.2 This figure is concerning for several reasons, one of which is the financial cost to parents for caring for their child. In the U.S., poverty among families with an autistic child is growing rapidly with very limited government-funded programs to assist parents.3 This places a big burden on families with autistic children.

The Lifetime Cost of Raising a Child with ASD

ASD is a neurodevelopmental disorder associated with impaired social ability particularly with respect to communication and interaction. Other characteristics of ASD include restricted and repetitive patterns of behavior and limited interest in activities.4 The disorder ranges from mild to severe cases that make daily routines challenging and nearly impossible for those affected and their families.4 ASD is associated with functional impairments that carry long-term health, social and financial costs for families and the society at large.

According to authors of a 2014 study published in JAMA Pediatrics, the financial toll on families and society “is much higher than previously suggested.5 The study finds that the cost of supporting an individual with ASD with an intellectual disability over their lifetime amounts to $2.4 million in the U.S. The study estimates that between 40-60% of individuals with ASD also have an intellectual disability.5 The cost of supporting an individual with ASD without an intellectual disability is $1.4 million.

The major components of the cost for children were special education services and parental productivity loss. For adults, the largest components of the cost were supportive living accommodation/residential care, medical care and individual productivity loss.5

David Mendell, an author of the study and the Director of Center for Mental Health Policy and Services Research at the University of Pennsylvania told The Huffington Post:

I was surprised that the second-highest cost in childhood was lost wages for parents leaving work to care for children with autism. Normally, when we look at expenses, we’re looking at system-level expenses, education costs… We’re so rarely looking at more indirect costs.6

The study reveals that on average in the U.S., the cost for children with autism who also have an intellectual disability was over $107,800 per year up to age 5 and approximately $85,600 per year between ages 6 and 17.5 Among children diagnosed with ASD but without an intellectual disability, the costs were lower with approximately $63,290 per year up to the age of 5 and $52,205 per year for those between the ages of 6 and 17.5

Forecasting the Economic Burden of Autism in the U.S.

According to a report published in the Journal of Autism and Developmental Disorders, the total economic costs for autism in 2015 was approximately $268 billion in the U.S.7 This figure included annual direct medical, non-medical and productivity costs combined.7 The report states that this estimate is on par with estimates for diabetes and attention deficit and hyperactivity disorder (ADHD) and far exceeds the costs of stroke and hypertension.7

The report’s author Paul Leigh, a health economist at the University of California-Davis Center for Healthcare Policy and Research, states:

But if the prevalence of autism spectrum disorder continues to grow as it has in recent years, ASD costs will likely far exceed those of diabetes and ADHD by 2025.8

The report forecasts that the cost of ASD will leap to an estimated $461 billion by 2025 if current trends continue.7 This raises some very concerning issues that the authors articulate as follows:

The burden of ASD is significant for 2015 but alarming for 2025 and, in our opinion, invites debate about policy responses. The first response is that research into the possible modifiable causes of ASD should become a priority as great as other major diseases; prevention is cheaper than cure or than improving the functioning of persons with ASD. If modifiable causes can be found, for example, a toxin, then another policy response would be to eliminate or reduce the amount of that toxin in the environment. A third response is a call for additional research into cost-effective treatments to improve functioning. The paucity of cost-effectiveness or cost-benefit studies is remarkable.7

The U.S. faces a great threat to its economic success due to the increasing prevalence of ASD. Not only do families bear the financial burden of caring for a child with ASD but also if our children continue to get diagnosed with ASD, they are unlikely to be productive in the labor force as adults. Public health officials should be treating this with urgency and focusing their efforts on understanding the cause of ASD before it is too late.


References:

1 Centers for Disease Control and Prevention. Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey. National Health Statistics Reports Nov. 13, 2015.
2 
Autism Speaks. Facts About Autism. AutismSpeaks.org.
3 
Autism Spectrum Disorder Foundation. The Financial Impact of an Autism Diagnosis. MyASDF.org.
4 National Institute of Mental Health. Autism Spectrum Disorder. National Institutes of Health March 2016.
5 Buescher AS, Cidav Z, Knapp M, Mandell DS. Costs of Autism Spectrum Disorders in the United Kingdom and the United States. JAMA Pediatrics 2014; 168(8): 721-728. 
6 Pearson C. Lifetime Costs Of Autism Can Exceed $2 Million, Study SaysThe Huffington Post June 9, 2014.
7 Leigh JP. & Du J. Brief Report: Forecasting the Economic Burden of Autism in 2015 and 2025 in the United States. Journal of Autism and Developmental Disorders 2015; 45(12): 4135–4139.
8 Autism Speaks. Autism’s costs to U.S. economy estimated to top $265 billion for 2015. AutismSpeaks.org July 27, 2015.

10 Responses to The Hefty Cost of Caring for Children and Adults with Autism

  1. M. Wright Reply

    September 8, 2016 at 7:54 pm

    Hitler would be Jealous!!! Big Pharma and the Government
    have done a far better job of brain washing people into believing in Killing and Maiming people then he did.

    History does repeat itself. The same only with a twist.

  2. Karla Bening Reply

    September 2, 2016 at 10:19 pm

    Until someone with proof can show that the toxins are the culprit we will continue to be forced to get vaccinated. Washington continues to force healthcare workers and their patients to get vaccinated in order to receive financial reimbursement. We are even threatened we will lose oyr jobs if we don’t vaccinate.This is a crime. Where are our rights to choose for ourselves to be vaccinated or not. What about true informed consent for our patients? Where are the whistle blowers ? Help!
    My son has a learning disability and my nephew is on the spectrum.

  3. Irena Reply

    September 2, 2016 at 10:30 am

    What we really need is to make this data enter into the mainstream “vaccines are cost effective” mentality. No, they are not, and in fact they will bankrupt the healthcare system when us the parents die off, because no state can provide adequate care for adults with autism in numbers we have right now. And they will only grow because those corporate monkeys keep vaccinating the next generation!

  4. Karen Reply

    September 1, 2016 at 8:10 pm

    Dear “Hold on”, I am really sorry you have not been informed that vaccines do cause autism. Please watch the documentary Vaxxed, it’s the best $3 you will have spent in years. After that you can read The Vaccine Papers, where you’ll find how aluminum in vaccines ends up in organs including the brain causing inflammation. Whilst you are at it, you can check on vaccine trials, how long are their”safety” studies, and how the whole “vaccine schedule” has never been tested, except on our children that is. You will have many exciting hourss ahead of you of pure research in all things they are not telling you. Good luck with your vaccines!

  5. Denise Torres Reply

    September 1, 2016 at 7:45 pm

    My son Joshua is now 25 and was developing normally documented by his medical doctor , until 17 month shots. He stopped talking , interacting, responding to his name, started having explosive diarrhea, screaming fits and so much more. Even the doctor admitted it was the vaccines, but told me Josh would be fine in a few days to a week. He never recovered and was later diagnosed with autism. He is non verbal and requires our care 24/7. It is one of the cruelest type of vaccine damage because these kids are smart but cannot express it. We get to spend everyday watching just how horrific vaccine damage can be. Even worse is my story is the same as millions of other families. That’s why we’re are bringing up vaccines. If you don’t know this go get a copy of the movie VAXXED on Amazon. CDC knows vaccines are causing autism and lied and destroyed data to cover it up. Thank goodness a whistleblower kept the 10,000 pages of data and gave 10 hours of confession all recorded which is what VAXXED is all about.

  6. Emily Reply

    September 1, 2016 at 4:00 pm

    My son Joshua who is now 23 years old, was vaccine damaged at approximately 18 months and the Autism truly manifested by 3 years of age. The cost to us has been astronomical over the last 20 years. I couldn’t work and from age twelve till today, he’s had nursing services seven days a week. His care is in the millions due to medical complications. He’s been eating through a G-tube for eleven years now. He’s non-verbal and incontinent, but he’s ambulatory.
    we can’t afford to have retirement savings because all of our savings has gone into helping Josh stay healthy. While the government helps with some of his medical expenses through Medicaid, it doesn’t cover the costs for supplements and the alternative doctors who have truly helped my son.

  7. hold on Reply

    September 1, 2016 at 2:03 pm

    All of these things are true, but what does this have to do with vaccines?

    • Wayne Reply

      September 1, 2016 at 7:16 pm

      It has EVERYTHING to do with vaccines. The astronomical increase in autism directly correlates to the increasing number of mandated vaccines. There are ZERO safety studies of the current vaccine schedule versus unvaccinated kids.

    • Kayla Wildman Reply

      September 2, 2016 at 4:26 am

      What does the cost of autism have to do with vaccines? Google these things and start reading:
      “Theresa Deisher Prevalence of Autistic Disorder”;
      “C.D. Nevison Temporal Trends” (be sure to access Additional File 1 and look at ALL the graphs);
      “Russell Blaylock Danger of Excessive Vaccination During Brain Development” (cites about 170 neuroscience research reports, focusing on vaccination and autism).

  8. Shannon Young Reply

    September 1, 2016 at 1:05 pm

    I was hopeful that the documentary Vaxxed would help people to understand this crisis, to be alarmed. It is helping a lot of people to see this, but so many of my friends have yet to make the time to put this situation on their radar. It is very frustrating.

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