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The Cost of Raising a Child With Autism

This article was written by in Health. 14 comments.


A few years ago, I shared a statistic showing that it costs almost $200,000 to raise a child, from birth to age eighteen. If that weren’t enough of a financial burden, consider that one out of 88 children are now diagnosed with autism, according to the Centers for Disease Control and Prevention (source, pdf).

Regardless of whether this significant, 78 percent increase in occurrence since the last study is attributed to broader diagnosis, more families are paying for the services a diagnosis of autism requires. Insurance will not cover all costs for therapies associated with autism or autism spectrum disorders. Families will need to pay out-of-pocket for many medical expenses. While the cost of raising a child to age 18 might average around $200,000, dealing with autism could add another $25,000 a year in medical costs.

The expenses don’t end with therapy and doctor’s visits. Beyond medical expenses, parents with children with autism often need to pay for special education, day care, and a home for an autistic adult who can no longer live with his or her parents.

The emotional burden placed on parents of autistic children adds to the financial burden. Parents of children with autism earn significantly less than parents of children who do not have this condition, presumably because the parents have extra responsibilities in competition with the attention they give to their careers. Mothers of autistic children average earnings that are 56% lower than other mothers. Dealing with autism from a financial perspective is doubly difficult due to the increased cost of care and the parents’ lowered income potential.

As a result of the increased financial burden, many parents of children with autism need to resort to going into debt to cover their costs. Today’s expenses may crush any dreams about retirement, and with a second or third mortgage, the costs of paying for housing may last until death.

It’s all very good for financial gurus, bloggers, and authors of books about money management to extol the virtues of saving money, cutting back expenses, and earning more, but sometimes, some families are faced with realities that place them beyond the sphere of accepting mainstream financial advice to improve their financial conditions. Everyone should be out of debt, but an average family earning average salaries with extraordinary needs like those that arise out of autism can’t be addressed by mainstream financial advice.

Experts write about making sacrifices, like forgoing the $6 daily latte and saving $1,500 or so a year. Experts talk about negotiating a raise from your employer. They argue about the best method for getting out of debt. For families dealing with tough financial issues, these discussions are irrelevant. They need support groups, financial assistance, and specialized advice for making the most out of a difficult situation.

And when the biggest issue a family faces is related to health, financial issues become just a secondary concern.

Have you ever dealt with autism or another health issue in your family that required expensive care? Please feel free to share your experiences, particularly with the effect they had on your finances or your philosophy of money.

CNN

Updated April 12, 2012 and originally published April 3, 2012. If you enjoyed this article, subscribe to the RSS feed or receive daily emails. Follow @ConsumerismComm on Twitter and visit our Facebook page for more updates.

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About the author

Luke Landes is the founder of Consumerism Commentary. He has been blogging and writing for the internet since 1995 and has been building online communities since 1991. Find out more about Luke Landes and follow him on Twitter. View all articles by .

{ 14 comments… read them below or add one }

avatar Andrea @SoOverDebt

My son is autistic. Luckily he has Asperger’s, which is a much milder form and doesn’t require quite as much in the form of treatment/care. That said, I’ve still spent a LOT over the years for things like speech therapy, occupational therapy, medication, the next “miracle study system” that will help him succeed in school… It adds up! Especially the travel costs for all these things.

I would go to the end of the earth for my son, and I’m very lucky that he functions as highly as he does, but my career and earnings have definitely been affected. I feel like I spend half my life meeting with his school to fight for accommodations that will allow him to succeed. He’s going to high school next year, and it’s like climbing a mountain to get services for a child that “seems so normal.” Kind of hard to focus on work when my bright, capable son is bringing home Ds and Fs on his report card!

I won’t write a novel in your comments, but I’ll just say that having a child with special needs changes EVERYTHING. Financially, emotionally, and (most difficult of all) parents’ expectations for the future. Planning ahead takes on a whole new meaning when your life is anything but average. Thanks for this post.

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avatar Luke Landes ♦127,505 (Platinum)

Thanks for sharing your experiences, Andrea! It makes you wonder about all the kids in the past who were not diagnosed with Asperger’s when they should have been, and how their lives might have been different had they received the support and accommodations they might have required.

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avatar Naveen Jain

My son has autism and he is on the low functioning end.

To help him, his peers, educators, care givers and parents, my older son has started Worldwedream.org project that raises awareness in the society towards not only autism but other disabilities as well through inspirational and compassionate stories.

Check it out today.

Thanks

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avatar twiggers

Flexo – I am a researcher studying autism and the effects on families. Curious to find out your citations for the career impact? Is that current research? I am not doubting it at all, but I am just curious.

In my research experience I have found that the impact on families is tremendous and I am truly amazed at how parents and families continue to function so highly!

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avatar Charlotte@EverythingFinance

Good Points. I agree with your statements about what all the experts say about saving and paying down debt…sometimes other things like family health come first. This just reminds me to thank God for my health child and to hug him more.

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avatar Evan

My office does a lot of planning for families with Children with Special Needs and the devotion most have is AMAZING. What I have found is that most are woefully underinsured when it comes to leaving a child with special needs behind, but it seems to be only because it is so hard to face that possibility and that the present is so daunting/busy.

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avatar Steve Mertz

A buddy of mine has an autistic child, that he loves to pieces. I can tell you he spends a lot more than $25,000 a year on her extra needs. It has kept him very focused on his career and making money. For me, I had spinal cord damage and have been on crutches since childhood. It does cost me a lot more than an “average” person because of physical therapy, crutches medication and such. I really had to make a choice-live off the system or strive to become financially independent. The latter was much more appealing! Parents are the ones who really carry the emotional load and hopefully they discover a way to care for their children and become financially well off-it’s a hard gig!

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avatar Jess T

My brother has Fragile X syndrome, which is one of the genetic causes of autism (there are so many other causes, though – autism is a very broad spectrum). His capabilities are probably on par with a 4 year old, though I know he understands more than he can communicate. Having someone in the family with a mental disability affects everyone in that family in so many ways – some good, some bad. I will say that financially it is very tough… My mom is a retired nurse, and could only work 3rd shift in order to make sure she was home for my brother. Even when he went to school she still had to be there in the morning and afternoon to get him on and off the bus. (In the morning, she or my dad would share responsibility of things like make sure he got dressed, tie his shoes, get him breakfast, etc.) After he graduated from high school, my parents had to fight to get my brother on a very limited list, plus get state assistance, to enter into a workshop program that he could go to during the day so he wasn’t just sitting at home. Honestly, it’s been a fight ever since my brother was born for them to scrape together enough money and apply for state assistance and special programs just so the family could get by and make sure that my brother was taken care of (he also has physical disabilities that are common to people with Fragile X, and on top of that was diagnosed with diabetes a few years ago).
I myself will be undergoing genetic testing before I get married next year so my fiancee and I can determine our risk of having a child with Fragile X. I absolutely love my brother, but I’ve seen how difficult it can be taking care of someone who will never be able to care for themselves. I’ve also seen how my brother struggles with the limitations his disability imposes on him. Because of that, my fiancee and I know that if I am a Fragile X carrier, we’ll choose to adopt, or possibly do IVF (where they can screen for genetic problems) instead of possibly burdening a future child with a severe mental disability.
I’m really glad to see this article was written… I saw it on Yahoo when I went to check my e-mail. I hope it helps get the word out and shed a little light on a situation that a lot of families struggle with. Maybe with some awareness there will be more of an effort to take the financial burden off of families who are dealing with quite a lot already.

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avatar Evan

Your parents are inspiration of how any parent should sacrifice for their child.

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avatar shellye ♦107 (Cent)

What an inspiration your parents are; bless them. And good luck to you on your genetic testing.

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avatar Elaine

To the author of this article, and to the parents as well — these are children with autism, NOT autistic children. They are children first, disability second. We wouldn’t call them cancerous children – we would say children with cancer. Yes, in the grand scheme of things, language isn’t all that important – but language leads to attitudes, which leads to stereotypes, etc. We want our children to be included in schools and valued in their community, so it’s important that we remember to give them they respect they deserve as people – children with autism, NOT autistic children! Please give some thought to this and try to change your language when possible!

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avatar Naveen

Very well said Elaine. I agree that people come first and then the disability.

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avatar ziyad

my son is autistic can I have a full article
.

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avatar Jamie

Luke – While I totally believe your statistic that mothers of autistic children earn 56% less than other mothers, it would be really helpful for my research to know the source of that statistic. Please help!

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