Raising an Autistic Child Can Exceed $2 Million: What You Can Learn from This

Study: raising an autistic child can be more than $2 million

Raising a child with autism spectrum disorder (ASD) is a challenge in the best of circumstances. ASD is classified as a neurodevelopmental disorder which can result in impaired social and communication abilities. It also often comes with a pattern of repetitive activities, behavior, or interests. ASD is currently considered the fastest growing developmental disability in the US according to the Autism Society, and it is estimated to affect one out of every 68 children.

Not only does an ASD child take an emotional toll on a family, but it can also take a huge financial toll. How much? Well over $1 million in the best case scenario, and as much is $2.4 million with children who have autism and combined with other associated disabilities according to a comprehensive analysis by USA and UK scientists in regard to the different costs which come from raising a child who has autism. These figures are much higher than previously thought, but also take into consideration the lifetime cost associated with the disorder since many who have ASD can never live fully on their own. The authors submitted an editorial on their findings and thoughts which was published online at JAMA Pediatrics.

The bulk of the costs (79%) accumulate from a variety of services which directly help the child. This includes such things as home healthcare, medical care, special education, and after school care which would be expected. What surprised the researchers was the amount of money the family ended up spending on indirect costs to help the child.

For example, 9% of the figures were attributed to the loss of wages and other parental income by family members who leave the workforce to become a caregiver to the child with autism. David Mandell, the senior author of the research, notes that it’s the indirect costs and consequences which aren’t discussed thoroughly enough when it comes to families with this disabilities.

As Mandell expressed, “One of the largest costs in childhood was lost parental earnings. We think this happens because parents have to drop out of the workforce to care for their children. They give up their jobs because of the struggle of advocating for and managing their child’s care becomes a full-time job. If we had more comprehensive, family friendly care in place, families wouldn’t be faced with this drop in income right when they’re incurring many more expenses.”

Even if you don’t have a family member with ASD, there is an important monetary revelation which you can take away from this study, and it can help you in a lot of ways with your own personal finances. When it comes to the actual cost of many things you buy, activities you do, or responsibilities you take on, the cost often goes beyond the amount of money you end up directly paying for it. Almost everything has hidden costs, and these hidden costs can be quite expensive if you don’t acknowledge they are part of what you’re spending.

(Photo courtesy of Allen Sheffield)

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4 Responses to Raising an Autistic Child Can Exceed $2 Million: What You Can Learn from This

  1. autismepi says:

    Where is the alarm?!!! Our children are sick!!! We need to figure out what is happening to our children!!! At current rates of increase, by 2025, the numbers could be one out of two children! This will bankrupt us!!! Push for research!!! We now know that that ENVIRONMENTAL FACTORS are a large part of the puzzle and these have barely been investigated!! If you don’t believe this is a crisis, talk to any educator, in any school district,and ask them about the impact on every child’s education.

  2. Lisa says:

    I believe that most daycares are family friendly. However the needs of many and probably most requires a 1 adult to 2 or 3 children at the middle school level (I teach autistic children in middle school). The needs for a younger child could well be 1 adult to 1 child or 1 adult to 2 children. Daycares are a business, not a public institution that is subsidized for disabled children.

  3. Paula says:

    I have an autistic child, and I can imagine the costs involved with raising my child to adulthood and possibly beyond. However, there are services we are accessing now in Maine that are a great help. We are a middle class family of three and I was able to get my 10 yr old son on Mainecare and now that he has a caseworker we are on a wait list for respite care and other services through Woodfords Family Services. As my son gets older, I anticipate there may be issues finding care for him as he ages out of the system (21 and over), which is why we are acting now to secure services for him. My son is considered high functioning, but we deal a lot with aggressive behaviors. He is currently in a regular after school daycare but we are looking at other options as he may not be able to attend after the age of twelve. My hope is that when he reaches adulthood he can find a job that will suit his abilities or maybe even attend a community college. My husband and I have talked about him staying with us as long as possible, but we know that at some point, he will need or even want to live on his own or at a group home. We are preparing for the worst and hoping for the best.

  4. Gailete says:

    What is with having to answer a survey to read this article???

    I have a 30 year old boy with high functioning autism. No way in the world did he cost any where near a million to raise him. That isn’t to say that at times I felt absolutely hopeless and was scared he would be living at home with me forever. But he has a full time job as the frozen foods manager at our local grocery store and works an additional 10 hours a week as a medical transcriptionist for a health agency. He lives completely independently in his own apartment, pays his own bills, has money in the bank, drives his own car that he bought and paid for himself and goes on vacations on his own. He is to the point most don’t even notice anything different with him upon first meeting, you have to know him awhile to see the social skills that are lacking. I’m proud of the huge strides he has taken in his life and how God has intervened on his behalf especially with placing people in his pathway that have been able to help him make the next steps that he has to make. I learned to always look for alternatives in ways of dealing with him as ‘normal’ child raising rules didn’t work with him. One of the hardest things was teaching him what it meant to feel hungry so that he would eat instead of falling apart emotionally. Once I found that feeding him a sugary treat would nip the activity in the bud, I was able to fine tune and work with him. It took years for him to understand that when he felt ‘that way’ he needed to eat and eat right now. While he will never perceive being hungry the same way we do, he now knows to eat when it is appropriate.

    I love my son and I know I am blessed to have one that was higher functioning, although when he was young it was very hard going. He never once fell asleep in my arms as a baby, he hated being touched, hugged or kissed. He didn’t talk until two weeks before his 2nd birthday and immediately proceeded to talk in complete sentences. Then at age 4 taught himself how to read by listening and participating while I helped his older brother with his reading homework.

    The difference in many ways with him was that 30 years ago, autism was a little heard of problem, and other than some help in his early years at a special school that is now a national center for autism, he went to school in regular classes other than 8th grade when I homeschooled him to give him a break from the kids that bullied him and then he ended up graduating with honors. His is a life of contrasts, but nowhere near a million did we spend on him! His father and I were divorced when he was about 5 and his dad (also most likely autistic) didn’t think anything was wrong with him so for the most part it was me trying to do what I could with him. As a single mom I had to work and there was no money for any extra services for the most part. Nor were extra services available either.

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