What Are the "Real" Costs of Autism?
Of course, part of this finding can be legitimately traced in some areas to lack of insurance or other coverage for specifically autism-related treatment (such as ABA or speech therapy). And part, I suppose, can be attributed to treatment of other issues that are sometimes associated with autism (epilepsy, mitochondrial disorder, etc.) - though I'm not sure those costs are included in the Pediatrics study.
But I was disheartened to read this portion of the article:
Jacquie Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son.If I'm understanding this correctly, Ms. Mace isn't spending thousands on therapy - she's spending thousands on "supplies." I've been scratching my head trying to figure out what kind of multi-thousand dollar "supplies" would be needed for behavior therapy...and outside of picture cards, ordinary toys, and perhaps a swing, I can't think of any expensive yet critical equipment.She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said....
She also mentioned dental costs. Of course, I wouldn't wish thousands of dollars in dental costs on anyone - but outside of the cost of sedation (which presumable was truly necessary), I don't see how dental costs can be attributed to autism. It is tougher to brush an autistic child's teeth, but the same can be said for a child with cerebral palsy or many other disorders. And while it's a good idea to sedate a child in a medical setting rather than a dental office, I don't quite understand why Ms. Mace would need to pay out-of-pocket for "hospitalization" for dental work.
It's easy to see how parents CAN rack up outrageous costs when caring for a child with autism. A parent who chooses to set up a sensory room in their home complete with professional equipment bought at retail cost could easily spend $10,000 or more. A parent who journeys across the country for a particular doctor's unique (and experimental) treatment is likely to spend tens of thousands on just one trip. A parent who chooses to work with a doctor who does not accept insurance will pay dearly for doing so.
It's equally easy, however, to see how a parent CAN spend far, far less.
In many areas of the United States, for example, schools and agencies will provide a wide range of services for little or no charge - including but not limited to speech, occupational therapy, physical therapy, and ABA. Parents who want to provide their own developmental therapy at home CAN do so for the cost of a book and video and second hand toys. Parents who want to take their children off of wheat and dairy CAN do so by buying foods at the local grocery store (our local ACME offers a range of wheat and milk-free products, including those old stand-bys meat, fruit, vegetables, nuts, juice...).
When I read articles and commentary on the costs of autism, I know that some of those costs are certainly very, very real. By I find that I am increasingly frustrated by what seems to me to be an overinflated estimate of the real costs of treating the direct symptoms of autism. What this type of study says, I fear, is that parents are spending an incredible amount of money - and suffering real financial hardship - because they believe they must.
Comments
I understand what you’re saying here and I do tend to agree.
Though, since our daughter with autism was born almost four years ago, we’ve spent, on average, $6000 out of pocket just towards her care. That’s about $25,000 in cash or credit cards we’ve paid. Only $2000 was towards “elective” care when we took her out of state to a sensory center because she (and we) hadn’t slept in seven months, almost literally, and no one we looked to in our state would help us or had any solutions that had worked.
The rest of that money, around $23000 was spent on medical care. Medications, co-pays, hospital stays, coinsurance from office visits and far too many tests, because she’s been in and out of the ERs and hospitals since birth. Every time her body experiences stress from a visit with grandpa, Thanksgiving with the family, Christmas shopping with mommy, vaccinations, etc., she experienced the episodes of serious illness that require medical treatment. After four years of tests and medical “care”, we know now that she has mitochondrial disease. Her autism is a part of that diagnosis and as such, with any stress that is almost impossible to manage, especially during the holidays without holding us all socially isolated, our little girl gets very, very sick. While it’s the mitochondrial disease in her body that is causing it all, the autism is what causes the stress that causes the breakdowns. Our costs are far from elective or unnecessary and without the autism, we wouldn’t be experiencing the financial toll. But we would pay any amount to see her healthy.
I would not pay any amount however for a sensory room or paid teachers coming to my house, a fireman poll in her room, etc. There’s need and then there’s want. It’s a line we have to strike with all our children, typically developing or not.
Turkish web sites.
http://otizm-autism.tr.gg
I’m not sure where all that money would go for expenses if it isn’t directly rlated to paying for services not covered by insurance. My son too was sedated for dental work and they really in most cases do not do this is an actual hospital and it’s same day surgery. My sons dental work was related to autism. He was a biter of all hard objects and offering soft sensory options would never due for him. He’d bite a chair leg. He broke off his upper teeth due to biting. It all boils down to the persons insurance company, ours knew my son had autism and other than the co-payment, they covered this and our portion was well below what this parent paid. All we needed was a good letter sent to the insurance company. Same with a newer med for bed wetting. The insurance wanted us to try alarms first which would interfere with his sleep disorder. Nothing like waking up the child who never sleeps as it is. All it took was one letter with full explanation of my child, his autism and related issues and the meds were approved (and the medication also works for him).
I spend more money on buying toys to encourage expanding my child’s play than I ever did on anything else. I probably spend more on Pokemon Cards alone.
Its an interesting and informative article related to psycholinguistics even it can be recommended for a general man who has interest in language studies.
actually, Laura, your comment brings up an issue that is sort of “buried” in the study (and in my blog).
your daughter has mitochondrial disease. Mito and autism are associated. But they are NOT the same disorder.
Mito involves physical illnesses, tests, and the other care costs that you mention. Autism per se does NOT involve physical illnesses, hospitalizations, etc.
So when you look at the costs involved with caring for your child’s AUTISM, do you include the costs involved with caring for your child’s mitochondrial disease?
Do parents whose children with autism also have epilepsy, mood disorders, GI symptoms, etc., count those costs when counting the costs associated with AUTISM?
I find this very difficult to parse out, since this kind of accounting winds up lumping together care related to separate yet (sometimes) associated issues.
Lisa (autism guide)
I guess the reason that I associate the medical costs from the mito disease to the autism, is because without the autism, my daughter wouldn’t experience the level of anxiety and stress that comes from a usual day. This stress wouldn’t tax her body the way it does in such an incredible way, causing the energy shortages and crashes medically. I know this isn’t true in all kids with mito (the energy crashes happen randomly or with exertion in other ways) and it certainly isn’t true in kids with autism and no mito. However, in our experience, the only time we’re in the ER or hospital is immediately following stress of the social kind that accompanies children with autism. After grandpa visits, she’s in the ER with acidosis, dehydration, vomiting, etc. After Thanksgiving dinner and decorating the Christmas tree…back in the ER with another crash.
So I understand what you’re saying, but I also truly believe that without the autism, we wouldn’t have discovered or experienced the depth of medical costs that we have to date. Maybe down the road as the mito disease progressed, but so far, every single one of her episodes that have landed her in the hospital have all been preceded by regular, every day social activities that cause the average child with autism a great deal of stress – what it does to my child’s body, with the accompanied deficiencies due to the mito disease have caused us extreme financial hardships. So I do blame the autism for now. Someday when it happens while she just sits on the couch watching TV, I’ll simply blame the mito. But until we can go visit grandma for a birthday dinner and not experience a subsequent ER visit, I really do point fingers at the autism, complicated and/or caused by the mito. (as a side note – we also blame the autism/mito combo for our social isolation. We’re constantly weighing the cost of joining in a social activity or holiday activity with the risk of what it might do to our child’s body because of the stress she might experience from it)
It is a blurry line at times and will get blurrier with time as the disease progresses – but the autism cannot be separated from the mito and say that it’s just the mito causing the medical and financial hardships. Especially if that mito is causing the autism and the autism is causing the stress that causes the mito complications – that’s a crazy circle, but it’s all very intertwined in our world.
I have a 7 year old son severely affected with Autism. He is still non-verbal even though I spend over $5,000 a year on speech and language therapy sessions. He receives minimal services from the school district (1.5 hours per week) so if I have any hope he’s going to talk at some point I provide him a bit more (I pay for an extra 1.5 hours per week). We’re not talking excessive overkill. I also paid until recently for 2 hours a week of ABA which set me back over $7,000 a year. I have neither the skills, the expertise or the time to be conducting my son’s ABA services. And as we all know, insurance has no intention of paying for such services – your kid has Autism, you’re on your own!
Let’s just say, I do see how parents can spend lots of money on their children with Autism. Just getting some of the bare minimum basics is exorbitantly expensive!
I totally agree! Just as my son started talking 4 word sentences, our 25 visits for Speech was up. Also, the c0-pays for meds are hundreds of dollars per month. Add in the behaviorlist and the fact that we keep getting denied Social Sec., it is DISGUSTING!!