Cost of Raising an ASD Child ($$$$$$$)
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| Sat, 05-21-2005 - 3:48pm |
Hi everyone. I put these stats together from what I could find on the WWW. They may be a little different from what you have heard/seen. The main reason I put them together is for DH to show his mom because she is constantly giving money and other benefits to DH's brother. This bro is a major lazy whining redneck clod of a guy (please excuse my harsh language, but this has been going on for decades). MIL even gave BIL a house on several acres, and she paid for his 2 yr degree while he lived with her (she didn't shed one $ for DH's education, which I paid for). When BIL got a DUI and wrecked his truck, she paid for most of the repairs. BIL owns a boat, just put a new deck on his house, etc. Lately, it's money for diapers (BIL has 3 kids) and a new truck.
The assumption is constantly made that we are richer, because DH is a computer engineer and I am psychologist, but our incomes are not that different when you factor in cost of living where we live (DC area). We are about to lose our minds with her inequity, so I put these figures together because I am quite certain that we are poorer than blue-collar BIL and his family, plus we actually funded our own educations, waited over a decade of marriage to have kids and buy a house, etc.. Maybe, some of you will find these figures interesting and/or useful, too.
Here's the info I put together:
Cost of raising 3 NT kids to age 18 = $511,380
$170,460 per child for 18 yrs (national avg) x 3 = $511,380 to raise 3 NT kids to age 18
Cost of raising 1 autistic child to age 18 = $710,460
(The average family with autistic child spends $30,000 per year out of pocket for treatment; many families spend over $60,000 per year on treatments; the Federal Government picks up about 18% of the cost of services for autistic kids; another 20% may be picked up by the state or local government, leaving parents with 62% of the cost per year)
$170,460 + (18 x $30,000) = $710,460
$710,460 to raise 1 autistic child to age 18
(Of course, you cannot assume the child will be independent after age 18)
An autistic child will eventually cost $3 to $4 million during his/her lifetime because the child will continue to require services and care after age 18. Families continue to supply a large portion of this cost. If families supply 62% of the cost of services for autistic kids for their entire lives, that is a cost of $1,860,000 to $2,480,000 per autistic child to be paid by families as a supplement to what state and federal governments will spend on that child.
Cost of raising 1 autistic child + 1 NT child to age 18 = $883,920
Now add about $1 million to this number for the family’s cost of continuing to support the autistic child for the rest of his/her life, because only about 6% of people with an Autistic Spectrum Disorder diagnosis are actually employed in adulthood.
Cost of raising 1 autisic child + 1 NT child to age 18 and beyond (not including college) = $1,883,920
Cost of raising 3 NT children to age 18 and beyond (not including college tuition)
= $511,380
If a family with NT kids got a $10,000 bonus or increase in income, this would often go toward a new car or vacation.
Families with ASD children almost universally say that they would spend any extra money they earn on their disabled child to help him/her function better or to support him/her in the future.
Government funding that is devoted to Autism is mostly being put toward research geared to preventing the disorder, NOT toward services for autistic citizens and their families.
THE END

Suzi,
Ugh! But this does not surprise me one bit! We figured that if had paid for Eric's EIP therapy (about 12 mos.) it would have cost $40,000--and he is mild, and that was just ST and OT twice weekly!
Katherine
Suzi,
what if cassian grew up to continuosly make the same mistakes, wouldn't you do what you could to help him? i think it's probably a parents need to help their child no matter how often they need it, if they can. you don't stop loving your child because they don't meet your expectations.
on the flipside, $$ can help all children succeed in some respect. but the most important therapy we can give our kids doesn't cost anything, and that is spending alot of time interacting with them. it takes a little creativity and a lot of patience, but you don't need $$ for that.
valerie
Valerie,
I think you misunderstand what I have posted and why. I'm not sure where you get from what I write on this board that I don't love Cassian in spite of his shortcomings, or that I won't love or accept him in adult life because he has a disability. I posted a list of figures that I found on the Internet, but I never said, I resented paying $ for Cassian. What I do resent is the inequity that MIL has shown toward her two sons. That history goes back way before Cassian was ever born.
I do work hard to ameliorate as much of Cassian's disorder as possible, but I understand that he will always be different from NT's. Please try to understand that this is a part of my background and it is who I am. I went into early intervention to help young kids with disabilities develop to their fullest potential, whatever that may be. Now, I have one of those kids living in my house. Is it any wonder that I want to do what I was trained to do round the clock?
I work hard with Cassian, spending hours each day doing in-home therapies (floortime, RDI, OT, etc.), which are all designed to help him reason better and learn to interact with others, and we are seeing very positive results. Other Moms of ASD children have actually asked me if I am for "hire," but I am declining any offers because I know it would be too much for me to open up a business at this time. By the way, if you saw me doing "therapy" you would just think I was having fun playing with my kid. The only thing that I makes it "therapy" is that I keep specific goals in mind when we interact, and I keep track of progress, so there is a therapeutic element to our interactions. Cassian doesn't think he is in therapy. He just thinks he is having fun with his Mom, and he wants nearly constant interaction. My husband, Tim, puts in a lot of time with Cassian too. We sit down and talk about what we are doing often and are both conscious of how we parent Cassian together. I think in-home therapies are really an extension of normal parenting, but you may have to focus on different goals and work through more challenges than you would with an NT child.
Regarding accepting Cassian for who he is: Well, there are some things he does, like hitting and kicking people that cannot be condoned. He also has many unsafe behaviors, like running into the street without looking, climbing on things that are too high, repeatedly closing body parts in the car windows, etc. We are teaching him to toilet, bathe, and dress independently and fix his own snacks also. I want Cassian to go as far as he can go toward being independent and happy, but he also needs to learn to respect other people and take care of himself. You wouldn't allow an NT child to escape from learning these important skills, and a person with a disability should be encouraged to do as many of these things as possible.
Additionally, you said that simply spending time with our kids was "free," but it really is not. Did you forget that if we become SAHM's, many of us take a huge income loss, including no retirement fund, health insurance, etc.? Tim also comes home early to spend time with Cassian, which is costing him overtime pay these days. I didn't factor these things into the expenditure list, but that's part of the economic cost of having a special needs child. I like being a SAHM to Cassian, and Tim likes coming home early from work. These are our preferred choices at this time, but they mean we have less income than someone who makes a different choice. Don't try to pin emotions on the numbers I posted. I was only sharing some figures I found. In our house, we are happy to make the sacrifices.
Suzi
Hi Suzi,
I'm not even gonna' tackle the $$ thing here. I just write the checks. I don't think about it much.
Anyhoo, I wanted to empathize on the IL thing. When DH was in college (granted an Ivy League univ. that his parents paid for) his father would say "We're not paying for grad school!" Fine. DH got accepted for PhD programs with fellowships, didn't ask for a penny.
The very next year (at least they asked him), MIL said "Would you mind if we paid for your brother's grad school?" We weren't married at the time, and DH is a much better person than I, but I was livid.
So DH was in grad school (took him 5 years). ILs would show up and complain about DH's student (read: living cheap) lifestyle. My FIL would also look at all the work and say "Glad it's you and not me!" Lots of DH's classmates had parents w/ PhDs who were supportive emotionally and financially. Not my ILs.
And don't even get me started on the unequal treatment with my brother and me. (Let's just say my 38-year old brother is living w/ my parents again.) I just vow to do better w/ my own kids and move on from there.
Hang in there,
Cathy
suzi,
i think (again) you are taking personally what i had said when in fact it was a thought i had about your MIL's behavior, seeing that perhaps she feels one of her sons has needs that she feels compelled to try to help with. it was in no way meant to say that you don't love cassian in spite of. it was meant to show you that regardless of his shortcomings, you still do love him--as does your MIL of your BIL.
as a reminder, i am doing floortime for 2 toddlers with autism. i am very familiar with what is involved and i was personally asked by the the president of the floortime foundation for my help in expanding DIR in NY, not to mention the speaking i do from a parents perspective on the benefits of floortime. i am totally aware of what's involved and am also quite educated in this department.
it is also my opinion that when you give birth to a child, whether special needs or not, you make a conscious choice to give your best to that child. i don't consider the time i spend with my kids a cost, it's an investment in their well-being. i also left a fulfilling full time job to stay home. in doing so we had to make adjustments to our style of living, as we all do. but i don't ever regret doing so. it was our decision to bring a child into the world and our responsibility to support them within our means.
lastly, accepting a child for who they are does not mean you accept that they don't need to learn things to get by in life. it means that if they decide that something is not within their reach, it's ok--ie: college, calculus, etc. i agree that teaching of skills are totally appropriate.
i'm not pinning emotions on numbers. i take one day at a time and just do the best i can. valerie
Suzi,
The way I understood Val is that perhaps this other brother maybe has some needs as well. Perhaps not diagnosed or obvious, but there are many folks who may need supports through adult life.
I know there are times when Emily feels the same though I try to be fair to her too in a different way. Like my DH once said, fair isn't everyone getting the same, it is everyone getting what they need.
I think you should take it as a compliment from your inlaws that they feel you are self sufficient enough as adults to not need the extra support.
Renee