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“High Cost of Autism” Makes the News…well, Duh! December 1, 2008

Posted by hopeauthority in Autism, autism diet, Family, Health, Parenting, special needs, Uncategorized.
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Seems everywhere you turn lately, you can find an article or a blurb about autism. How great is that?! My local newspaper, Newsday, is wonderful in its coverage.

If I had to guess, I’d estimate that autism awareness must be up over 2000% from where it was only five years ago. I am pretty sure autism actually was absent from the mainstream media back when ‘C’ was diagnosed in January, 2004…not that I just didn’t notice it because it hadn’t yet blown the doors off my life. Back then, the stats were 1:166. And in that short time we’re now at 1:150.  Will it get worse in 2009?

I’ve read a lot about autism: research, theories, diets, therapies…you name it. I’ve become what many people who know me consider to be an expert in the field. I am not an expert, but I do know a lot about diet and alternative therapies, and I am very willing to help others.  Because of that, I often get calls from someone who was referred by someone who was given my name from yet another person…like my own version of the Six Degrees of Separation of Kevin Bacon.

What I haven’t  read… until today… is how devastating autism is on a family’s finances.  Finally. Someone recognized the “unprecedented financial strain” on the families of the more than half a million children with autism in the United States.

The 2005-06 study included 40,000 children nationwide, with a broad range of chronic special needs health care issues, including autism as well as physical and mental illnesses. Of the 40,000 children in the survey, 2,088 had autism, which may make others think it wasn’t a large enough group to be reliably representative. Those of us living it know otherwise

But to highlight some points where the autistic kids were compared to non-autistic children with chronic health care needs, the study (appearing in December’s Pediatrics, lead author Michael Kogan) and summarized on page A26 of Newsday today, found that:

  • Parents of autistic children are three times more likely to have to quit their jobs/reduce their hours in order to care for their autistic children;
  • Parents of autistic children not only pay more for their children’s health care needs, but they spend more time either providing or arranging for those needs; and
  • Parents of autistic children are more likely to suffer financial problems.

Now, I am not suggesting that the parents suffering through raising a chronically ill nonautistic child are not as emotionally overwhelmed as the rest of us who have autistic kids…just so we’re clear on that one.  But I am wondering if the survey reflects these differences partly because, for many people, many of the therapies needed for their autistic children are not covered by insurance or provided by their school districts. (By “therapies” I mean anything from ABA, PT, OT, Sensory, Speech, and cutting edge/alternative items like MB12 shots or HBOT and the many, many nutritional supplements that autistic children on special diets require.) Many a family can…and has…gone bankrupt trying to provide these things for their autistic child.

I’ve even heard many people say they can’t afford to put their autistic child on a special diet because of the cost of the food and the supplements. And those that can, often can’t afford to put the whole family on it. Which means extra time (aka more exhaustion) for the mom cooking separate meals. Just to put it in perspective, a 5 pound bag of regular flour costs about a dollar or so and often goes on sale for much less.  Do you know what it costs to buy a single pound of almond flour in the health food store? $12.00! That’s $12.00 for a single pound vs. $1.50 for five pounds!  So, I buy in bulk through a mail order source and pay about $6.00/lb.  Wow, what a steal… And the price of the supplements ‘C’ takes…none of which is covered by insurance of course, exceeds $100/month.

Maybe if our health insurance covered more of these costs, the strain wouldn’t be so unbearable. Hell, I’d pay a higher premium if it meant any  of his expenses were covered. It’s just frustrating to pay so much for insurance which we rarely use (since we approach our health care holistically) and then to pay so much more out of pocket for those holistic therapies. It amazes me that most insurance companies will shell out for an endless supply of prescription drugs or the cost of an endoscopy/colonoscopy for these kids, but usually not for holistic/healing therapies like fish oil or vitamin supplements or HBOT.

We can’t afford sitters. So we can’t work traditional jobs that require staying til 5 pm. And you just know that you are going to get called to come to school for some reason or another more often that other moms…so you can’t just gamble that it won’t happen and take a 40 hour/week job. You need a level of flexibility that is almost impossible to find in the workplace.

And forget about going out as a couple!

But even if we could pay a sitter, how many of us are lucky enough to have someone we can really trust with our special needs kids?  That 15 year old neighbor girl would be fine for a typical kid, but imagine how many things an autistic kid could get into in the time it took her to text her BFF just once! OMG!  If the good folks at poison control know my  voice…and I am on ‘C’ like glue (except for my indulgent 30 second pee breaks which prompt him to well, um, drink sunscreen, maybe)… a regular sitter doesn’t stand a chance.  Paying a professional therapist to sit is a luxury reserved for those times when we absolutely have to go out without the kids… and the grandparents are going with us. (Curse those family weddings…)

Well, it’s high time ( wow, I sounded like my mother there…) people realized that we are under incredible financial strain. Contrary to what people may think, most of us don’t sit home because our husbands make a fortune. Many of us would love to work…or at least be willing to… so we could help out with the finances and have a chance to be around other adults.  But many of us don’t because we don’t have reliable childcare for our autistic kids…no one to get them from school if they’re hurt, stay home with them if they’re sick, or take them off the bus without worrying they’ll escape their grasp and run off. Or we don’t work because then who would do the eight thousand other things a special needs mom grapples with…like the extra cooking and shopping and planning of the double meals for special needs diets (and the dishes that go with that), or the extra laundry for the never-ending pee accidents, or the extra time it takes to do the homework with your special needs kid…and the extra attention you try to work in for your other kids, or…or…or…  

And because we spend so much time at home, we are lonely. We miss adult conversation.  The people who understand us best are the other moms going through the same grind, but they are just as overworked and have just as little time and energy and money to get together. So they are lonely too.

Funny how people are just recently worrying about money and talking about a recession.

My personal recession hit in January, 2004. I’ve already moved on to a full blown depression. Whether I’m talking economic or emotional, I’ll leave it to you to decide…

Anyone else feeling the pinch?  Has it caused you to cut back in autism-related or other areas? If you work outside the home, what do you do and how flexible is your boss? Any tips or suggestions to share?



1. tiredmama - December 6, 2008

Yeah. We are pinched (and then some). We did recently purchase a house (which pinched us even more), but needed to because apartment living just wasn’t working for us anymore. (Constantly on edge wondering if the middle of the night yodelling and hopping “contests” were going to have the cops at our door.) We used to do more with supplements and natural medicine, but can’t afford some of that now. We still do CF/GF with Christian, but can’t for the rest of the family because of cost. (Which means some meals there are three different dishes being made. Exhausting!) We can only do OT when approved by our insurance company and whatever other tiny bit that he gets at school. We are waiting for state-funding to kick-in so we can start receiving in-home therapy because we cannot pay for more than a session-a-month out-of-pocket. I would love to work, but can’t. Not now. Wondering how or if that will work out once Christian is in a full-day school program. I looked into working a year ago when we moved into the area, but none of the childcare centers sounded like they could “handle” our son and I didn’t want to start a new job to have the center call me on the first day saying that I had to come pick him up. It would be wonderful to have an extra income. For the time-being I give plasma twice a week while Christian is at school. It’s not a lot of income, but it helps pay for the heating now that it’s cold outside.

2. hopeauthority - December 7, 2008

Wow. They say misery loves company, but your post makes me sadder than I already was about how hard things can be for special needs families.

Hope the state funding hits soon. Do you think the OT would let you video tape sessions so maybe you could repeat it at home? Same with the once a month in-home therapy sessions?

Also, if you live near a university that offers degrees in the areas our kids need like Special Ed, OT, PT, Speech, etc., you may be able to inquire or post an ad to get a grad student to work with Christian at a low cost rate for now.

I knew we gave our blood for our kids…but you’ve really taken that to a new level. I can’t imagine how tired you must be from that, tiredmama…

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