Thursday, November 23, 2006

Debunking the Costs of Autism

A press release came out back in April titled Autism Has High Costs to U.S. Society, claiming that "it can cost about $3.2 million to take care of an autistic person over his or her lifetime" and that "caring for all people with autism over their lifetimes costs an estimated $35 billion per year."

This is nothing but bigotry of the highest order. It's no different to this as far as I'm concerned.

I'm aware such costs are studied in the context of a medical model of disability. The underlying assumption of this model is that disability is a burden that should be eliminated/cured. That's about the entire scope of the model. Never mind the track record of the model, or how realistic its goals, considering the inescapable reality that every person in the world will experience disability in their lifetimes, unless they die first.

What I would like to do in this post, nonetheless, is scrutinize the numbers in the report.

Let's start with the $3.2 million figure, assuming a life expectancy of 70 years for an autistic person. This would mean $41,714 is spent annually on the average autistic individual. I don't doubt some parents choose to spend that much in expensive ABA programs and such, but does it seem realistic that this is the average annual expenditure for an autistic from the day they are born until the day they die?

So how does the author arrive at this number? He first looks at estimated direct costs:

Direct costs include direct medical costs, such as physician and outpatient services, prescription medication, and behavioral therapies (estimated to cost, on average, more than $29,000 per person per year) and direct non-medical costs, such as special education, camps, and child care (estimated to annually cost more than $38,000 for those with lower levels of disability and more than $43,000 for those with higher levels).

Medical costs are documented in Croen et al. (2006). The excess annual medical costs for autistic children relative to controls is $1865, due mostly to the prescription of psychotropic medications. But that's for children. What of the lifetime cost? Let's multiply that number by 20, which gives $37,300.

As to therapies, while maybe only 30% of autistic children are put in ABA programs, about 70% seem to undergo speech therapy, which is also pretty expensive. I won't dispute the $29,000 a year figure, but let's see what the lifetime cost might be. How many years are autistic children put through these therapies in average? Let's say 5 years. This gives a lifetime cost of $145,000.

I won't consider expenditures in quackery, as this is not a cost of autism, but a cost of ignorance.

The author also considers indirect costs:

Indirect costs equal the value of lost productivity resulting from a person having autism, for example, the difference in potential income between someone with autism and someone without. It also captures the value of lost productivity for an autistic person's parents. Examples include loss of income due to reduced work hours or not working altogether. Ganz estimates that annual indirect costs for autistic individuals and their parents range from more than $39,000 to nearly $130,000.

The average annual income per person in the U.S. is about $30,000, so right there the figures provided in the article do not make sense.

It appears that about 25% of autistic people diagnosed a generation back work and live independently. But the analysis is about autistic people diagnosed today under current criteria. Let me make an assumption here. About 25% happens to be the percentage of autistic people evaluated as not having mental retardation a generation back. Currently, that's more like 70%. I conclude that about 70% of autistics diagnosed today will live independently and work. (No, I'm not saying that only those without mental retardation work, or that none of those without mental retardation are out of a job -- I'm just using this as an artifact to estimate trends). So if we were to assume that the average income of a working autistic person is equivalent to the population average, annual wages lost per autistic person would be $9,000 a year. But that is a big if. Autistics might tend to have very low wage jobs. On the other hand, they might tend to have very technical jobs which are fairly well paid. Either way, let's assume $9,000 x 40 is lost in wages per autistic person over a lifetime, or $360,000.

There are intangibles which aren't taken into account. How do we quantify the contributions of someone like Temple Grandin to the food industry? Or the contributions of Vernon Smith to, you know, ECONOMICS. Are we allowed to claim Bill Gates? His net worth is $53 billion, a tad more than the purported annual cost of all autistics in the U.S.

What I've estimated so far comes to a lifetime excess cost of $542,300 (minus big intangibles) per person. I do not believe it is anywhere near $3.2 million. Trouble is, a figure that is not in the millions won't make for big headlines.


  1. My son cost the taxpayers $70,000 for school and between $40k and $50K for a home health aide per year. The cost for residential care is higher. I'm not counting my lost wages, chelation or home alterations and repairs.

  2. Btw, fogot that part. The cost of special education per student is an extra annual $9,369 (source). Assuming all autistic children in the US are in special education (probably not true) since the age of 4 to the age of 18, that's about $131,000 to be added to the lifetime estimate.

    Now, $70,000, how's that? John, you're probably not doing ABA or anything of the sort. Chelation is all you need, right?

  3. Joe, Kids with ADD get special ed. Your per student cost for autism is much higher. One on one aides add to that cost significantly. You can call the special ed director here if you don't believe me and check. No, no ABA.

  4. And you think all autistic kids in the US are in a special ed program with an educator dedicated 100% to a single child? That would be physically impossible, and still probably not an excess cost of $70,000 per child.

    Obviously, there are kids with bigger impairments and educational needs than others. But if they want to claim a huge cost of autism as a whole, they need to analyze the entire spectrum. And once you do that, the cost per child goes down. If you only consider the more disabled children, then the overall number of children goes down and the overall cost goes down. You can't have it both ways. It's dishonest to try to calculate the overall cost as if the 1 in 166 autistics all have the same severity of disability.

    And the whole thing is stupid to be honest. Would it make sense for someone to argue that the elderly have a huge excess cost relative to the non-elderly, and propose that people should be required to die at the age of 60?

  5. BTW, shouldn't that cost gone down substantially as you're "curing" Sam? Looks like you still have a long ways to go, contrary to some of your claims.

  6. Nitpicking irrationally does not change the numbers for autism. The 1 in 166 has nothing to do with the cost of autism per child.
    I never claimed I didn't have a long way to go to cure Sam. I only claimed he's improving after showing zero progress for 7 years.
    I did have to fight to keep his one on one aide this year as the spec. ed. director also recognizes the improvement.

  7. Of course it has something to do with it. Whether you calculate only for autistic disorder or for all of ASD affects the average.

    Anyway, you've been chelating for two years, right? It's proposteroous for you to believe at this point that you'll cure Sam by simply extending the chelation period. It's fantastic, ridiculous, a most classic instance of magical thinking.

    How many more years will you continue to carry this out? Don't you worry you could be damaging his kidneys and brain by chelating this long?

    Can you find any examples in the literature of chelation being done for this long and what to expect?

  8. BTW, pet related expenses in the US are over $28 billion a year (source). That's about the same as the purported cost of all autistics. Yet, you won't find any outrage about the cost of pets and the need to make them go away. You see, that's because pets are our companions; it's like they're almost human.

  9. Joe; I know this is complicated for you but, the $3.2 million per autistic will be the same whether there are 10 autistics or 10,000,000,000 autistics.
    The only real literature on chelation is in the Autism-Mercury Yahoo group. Some have been chelating longer than two years. As long as miniscule improvements continue, it is in Sam's best interest to keep chelating. Parents of autistic kids are not the least bit concerned with causing brain damage. They are concerned with fixing it. I don't think there is brain damage worse than autism aside from multiple blunt traumas with heavy objects.
    I know some of your associates won't realize you're joking with the pet analogy. For the sake of Andrews, comparing healthy pets who don't need to be cured of anything is different than trying to help children overcome mercury induced brain damage. If it costs too much to cure a pet, you just put it to sleep. While that might be the best option with Andrews, I still think he deserves a cure.

  10. If I see any more death threats, implicit or explicit, I'll start deleting posts.

  11. I don't think there is brain damage worse than autism aside from multiple blunt traumas with heavy objects.

    Are you kidding me? Is there MRI evidence or something to back up this wild, proposterous claim?

  12. Besides the huge amounts that parents spend per year on therapies, special diets, etc. for their kids with autism, there is an even larger, potenial amount that will be expected to be paid for by taxpayers. We have a HUGE group of kids right now that when their parents/current caregivers are gone, who is going to pay for their needs? Parents do the best they can to help prepare their kids to be as independent as possible while dealing with ASD. (I don't like the word 'cure' as I feel that is a long way off). But what no one seems to understand is if insurance companies were forced to cover autism therapies - even the standard speech, OT, and PT - forget the other "fringe" therapies - many of our kids would not need nearly the amount of assistance and would be able to hold down some sort of a job, thereby not needing as much financial assistance from the government. My son is almost 8 years old. He has an older sister who we are "training" to be able to help and oversee him. But we truely want him to be as independent as possible. But we are paying at least $900/mo for Speech, OT and PT.

  13. Cindy: Economically speaking, that sounds like an investment you're trying to make. Spend $10,000/year now, and your son might be able to support himself later. Abfh discussed a similar scenario in relation to ABA costs.

    I'm someone (like most anti-cure autistics) who's really skeptical of therapies, even speech and so on. (That might not be true of most non-autistic parents who are anti-quackery, however). These are not often studied in the rigorous manner that would be required of other treatments for them to become accepted. And do they really have a sustained impact such that they affect adult outcome (positively)? There's also an unresolved argument to the effect that it's better to spend time teaching autistic kids to exercise their strengths, rather than work solely on their deficits, but that's an entirely different discussion.

    BTW, your annual expenses on therapies are lower than the average of $29,000 estimated by the report.

  14. Joe; You don't need an MRI to know a kid's brain doesn't work right when he can't talk, eats dirt, smears feces and runs in front of cars.

  15. So the brain of a 1-year-old toddler doesn't work right?

    I'm just calling you on your claim that autism is the worst form of brain damage, except for blunt force trauma. You know, worse than hypoxia, worse than a massive stroke, worse than an injury causing PVS.

  16. Joe, If the one year old's brain worked right, it would not be diagnosed as autistic. Stroke victims usually have problems with movement but their brains work. They arenot known to start smearing feces.

  17. Joseph,
    About therepies for autistics that arent being studied in the rigorous manner that would be required of other treatments for them to be accepted:
    Is this because the scare of the epidemic of autism is allowing for peoples methods of treating autistics to not be closly examined; as in there is so much need that, to be too careful, would prevent the parents of getting what they need? I mean is that idea being used in a way that is fueling the problem of therepies not being researched as they should be?

  18. I mean from what I see in your post, this is not really the issue. But Im just wanting to make sure I understand what may be influencing how and why the focus isnt where it should be.

  19. "if insurance companies were forced to cover autism therapies - even the standard speech, OT, and PT - forget the other "fringe" therapies - many of our kids would not need nearly the amount of assistance and would be able to hold down some sort of a job"

    I totally agree with Cindy - helping autistic and other special needs children can be a good investment. But I'm surprised that there isn't more discussion about how a higher minimum wage goes against the goal of helping more people with Down's Syndrome, autism spectrum, etc. to help support themselves and also lead happier, more fulfilling lives.

    Note that I'm not saying that no 'special needs' person could ever be worth more than a very low wage. Many have made enormous contributions. But at the margin there are bound to be some (with Down's Syndrome, many) that are able to contribute in a low-skilled way but could easily be priced out of the market if the minimum wage is pushed up too much.

    And I don't mean to be offensive by grouping autism with Down's Syndrome, since it seems to me that autism is a normal (although perhaps extreme) variation in brain formation and functioning. Regarding those that view it as pure damage that must be cured, how do they explain the strong correlation between autistic tendencies and mathematical abilities? I was a PhD student in a very mathematical economics department and am convinced that many (particularly of my better) professors were at least autism spectrum.

    Pardon me if I'm using poor terminology or seem to be trying to divert the discussion (does that make me a troll? I've never understood that term). My son has brain damage - to his cerebellum and brain stem - and shows behavior and learning patterns similar to autism in some ways but different in others. It made me very interested in how brains function, but I'm not pretending to know much about any of this. I read this blog occasionally to try to learn more.

  20. Ed -

    I think that Joseph was talking about standard therapies such as speech and occupational that have been studied in general and seem to help many children, but they may not have been studied carefully specifically for autism. Studies are expensive, take a long time and are tricky to do well. Once people have a prior expectation that the therapy is good, it doesn't receive as much scrutiny in specific applications.

    I saw this for vision therapy. My son has nystagmus, presumably because of his brain damage, and his occupational therapist kept recommending vision therapy. I did some research first, and vision therapy apparently has been very useful for other vision problems such as strabismus, which is much more common than nystagmus. But the few studies specifically on how vision therapy helped nystagmus found that it had no effect. It wouldn't have hurt my son, but his time and my money were probably better spent elsewhere.

    My son's therapist was pushing vision therapy because it frequently works (since strabismus is more common than nystagmus). Recommending something that might help is easier than doing the hard research to find out if it really applies in specific cases. My guess would be that speech and occupational therapy are likely to help many autistic children, but Joseph is probably right that it hasn't been studied carefully in this case, since the therapies are widely accepted in general.

  21. Joseph,
    Sorry I got off track again.
    I was just asking Joseph to make sure I understood where he was coming from.I often miss it.Guess I did again.Guess that makes me the troll.Ive been called worse.
    I wish I knew more about brain injury and vision issues.Thats stuff I need to know about myself. Ill look up the terms you used here.

  22. Ed: What I mean by that, roughly, is that if a study came out today claiming that the GFCF diet is useful as an autism treatment, using the same exact methodology as the landmark ABA trial by Lovaas in 1987, that study would be completely and utterly demolished and laughed out of the Autism Hub.

    If double-blind is difficult to do in studies of certain types of therapies, at least it would be nice if the groups are randomized and the evaluators are blind to treatment. It seems to me that it would be very easy to introduce bias in evaluations of autism.

    Now, there is some convincing evidence that speech therapy does help with speech delays, but it's not as rigorous as I'm hoping, and it's not autism-specific. (Someone can correct me if I'm unaware of any studies inconsistent with what I just said).

    I have had my son in speech therapy, BTW, but I don't believe it has helped him. He's not ready for speech. I tutor him personally now, and we're making some progress in receptive language, but I mostly focus on building his strengths. Personal tutoring has the added advantage that the parent gets first hand experience of the deficits and strengths of the child. There are many other advantages I can think of.

  23. I understand the argument that having taxpayers pay for speech, OT and so on would be a good investment for taxpayers. And what autism parent wouldn't want not having to pay for that out of their own pocket? It's just that I don't believe it works out monetarily, because as an educated guess I think most autistic children diagnosed today will live independently anyway. Certainly, if it helps someone live independently as opposed to end up in an institution, that might be a good enough reason to have taxpayers foot the bill, independently of any return on investment. But I'm not certain it even does that.

  24. Arsewipe Northeastern: "For the sake of Andrews, comparing healthy pets who don't need to be cured of anything is different than trying to help children overcome mercury induced brain damage. If it costs too much to cure a pet, you just put it to sleep. While that might be the best option with Andrews, I still think he deserves a cure."

    What the fuck is this imbecile's obsession with me? This is getting way too disturbed.

    Maybe JBJr should be chelated. Might kill him, sure, but that seems okay with him (since he'd risk killing any of us); one way or another, it'd stop him from being a prick.

    I'm getting sick of this.

  25. BINGO! Great analysis. Now, why aren't you doing the lecture circuit with Temple Grandin and Tony Attwood?

  26. BTW - I was referring to the original post, not the "discussion" between fore sam and joseph.

  27. Andrews;
    Cured autistic children can debate their point without using abusive language. You may be able to accomplish this if mercury is not fogging your brain.

  28. Manager mom: Thanks - and sorry for allowing Fore Sam to troll the blog and bait posters. I just have a high threshold for deleting comments.

    You might enjoy other blogs over at the Autism Hub.

  29. Hi Joseph,

    Nice post. Just a couple of thoughts (with no implication that you agree or disagree intended):

    1. Re: rate of return on some therapies. While something can be measured from an ROI perspective, it doesn't mean that it should be, or that this is the only evaluation criteria. Speech therapy, OT, etc. can have a positive impact (if they work) on someone's general well-being, outside of any economic return. Just as sending a kid to summer camp can have benefits without necessarily increasing the child’s lifetime earning potential, or sending a kid to art camp can benefit them without requiring that they become another Modigliani to 'pay it back'. The evaluation criteria I use with my daughter is whether I think something helps her to meet her potential and/or helps her well-being and/or increases her happiness and enjoyment in life.

    2. I'm not really a fan of the whole 'spend some now or spend more later' blackmail approach to justifying government support of therapy. My child is more than an economic unit, and we shouldn't have to use economic blackmail to justify investing in our childrens' quality of life. How many parents of NT kids have to do this?

  30. Imbecile: "Andrews;
    Cured autistic children can debate their point without using abusive language. You may be able to accomplish this if mercury is not fogging your brain."

    Um, no they can't since there are none.

    If mercury wasn't fogging your brain, you'd realise that.

    Show me you're worth changing my very-honest-about-my-thoughts-regarding-you language. Ah, but you won't.

  31. Don't bother to argue with Joe. Haven't you seen his type before...has a complex, an abundance of arrogance, and zero brain power. He spends his time looking up statistics to sound as if he has the slightest clue what he's talking about. An introto stats course will show that statistics can be used to prove whatever point you want. Joe, you'll have to study more than you can ever imagine to overcome the deficits YOUR brain clearly has.

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