The “Cost” to Society
Autism a lifelong burden, study shows: Because few adults with the disorder can work, the economic costs continue trumpets a headline in today’s Globe and Mail. The article refers to a study published in the April Archives of Pediatric and Adolescent Medicine in which it was noted that $3.2 million is the “cost to society” (in the US) to care for an autistic person over his or her lifespan.
What kind of society sees those who are disabled—-who are considered “different”—strictly in such monetary terms?
It is true, Jim and I know we have to plan ahead for Charlie’s future. I hope that Charlie will be able to work and hold down a job; I will be cautiously optimistic and say that I think he will be able to; I am quite certain that Charlie will need supports and care for the duration of his life. But emphasis on the “costs” of an autistic person to society simply overlooks the fringe benefits.
I wrote this over a year ago in The Wages of Autism:
Of course, we’d pay two and three and ten times over to help Charlie. This boy is worth double his weight in gold and just to hear him say “wait eat fries” as he did spontaneously tonight is worth a couple of months’ salary.
These hidden and evident costs of autism stand out all the more because it is likely that, while we intend for Charlie to have a job when he is an adult, that job is probably not going to be coming with a big paycheck. In the monetary sphere, raising a child with a disability entails giving a lot more than you’ll probably receive back from him, and that he’ll ever be able to repay, in a dollar sense.
It has been theorized by the anthropologist Marcel Mauss that, in the exchanging of a gift, there are three clear obligations: (1) the obligation to give; (2) the obligation to receive; and (3) the obligation to repay. According to this classification of giving and of exchange, the parent of an autistic child has a lot of (1), while (2) and (3) are big question marks and if not outright zeros.
If it’s affection and love I’m looking for as my Charlie-payback, I do reap a goldmine everyday.
I understand the need to plan ahead and budget, but I think it is possible to speak of the “cost” of (for instance) to Charlie to society not as a “burden.” To say that “autism is a lifelong burden” is tantamount to saying that autistic persons are burdens and to put a price tag on human life. And in order to really tell you the sum of how much I have gained—earned—from Charlie and from every experience I have had in Autismland, I would need a number so big—-as big as there are places of pi—that I cannot put my mind around it. And perhaps we as a society ought to start thinking not simply of the “cost” of autistic persons to society but of why this is a necessary, and a beneficial, expense.
14 opinions for The “Cost” to Society
mika
Apr 3, 2007 at 12:14 pm
I strongly agree with you …
I don’t mean to get too political.
It bothers me that we can spend billions on violence over seas. But we can’t spend money here to build up lives and add more quality to lives. These people can lead quality lives with job skills and life skills. I’ve seen it and instructed these skills to adults with Aspergers and Autism. With every child I always look 14 years or 10 years ahead. What kind of seeds I can plant to help in their futures.I wish people can look at their future instead of looking at their lives as “doomed”.
Again this is my opinion.
Lisa/Jedi
Apr 3, 2007 at 1:54 pm
My worry is that the emphasis on “cost to society” will cause school districts to give up prematurely on educating our kids. So far our disctrict has treated Brendan as though the money they spend on his special ed. needs is well-spent. I’d like this to continue, & to spread throughout the community… all kids are “worth it”!
Usal
Apr 3, 2007 at 2:21 pm
They need to stop with the drama and negative thinking. I’m autistic and make good money. I know another who makes much more than I do (I think he’s over 6 figures.)
Rather than focus on the negative image they should seek out those of us who are succeeding and have us be role models to encourage others to not give up on their dreams.
Harold L Doherty
Apr 3, 2007 at 2:25 pm
I have visited this site many times even though I disagree with the neurodiversity perspectives which dominate discussion here. I can’t believe though that you are now complaining because people try to estimate societal impacts of autism. Despite mika’s post the realities of autism are not so pleasant for many lower functioning autistics who end up living in institutional care.
Club 166
Apr 3, 2007 at 2:44 pm
I don’t think people are complaining about people estimating the potential societal impacts of autism. I think it’s very hard to put numbers to these things at this point, though, because of the expanding definitions of autism in the 90’s.
What I think people are expressing concern over (which is different than complaining about) is how those numbers would then be used.
Would those numbers be used as justification for limiting educational interventions to autistics who appeared to be “low functioning” early on, as money spent on them would appear to be wasted? This, I think, is a valid concern. I don’t want someone passing judgement on kids who are 5 years old, and deciding whether they warrant spending money on, or whether they are “hopeless” and doomed to be institutionalized.
Even if some autistics are destined to be institutionalized, I think their level of functioning can be improved, and their lives enriched, by spending money on them.
Sarah
Apr 3, 2007 at 3:33 pm
Besides, everyone–disabled or not–represents a “cost” to society to at least some degree. Education and other public services aren’t free for anyone, by any means. Yet only certain kinds of people get tagged as a “cost” to society. And part of the reason why so many disabled people (including autistics) don’t “give back” as much in the form of taxes is simply because the system isn’t set up to accomodate them. More disabled people *could* be “economic contributors” if not for the institutional practices and discrimination which prevents them from doing so.
Kristina Chew, PhD
Apr 3, 2007 at 4:14 pm
I have heard more than a few parents say with the proverbial laugh and sigh that they are already paying for a college or an Ivy League for a child, due to (yes) the cost of paying for therapy and treatments for their child (intensive ABA/IBI of the sort both Mr. Doherty and I have found useful for teaching our children, is often cited for its hefty price tag). I have often seen the high figures for this sort of education, as well as the “cost” of care for an autistic person throughout their lifetime, cited as justification for “why we need to something now to cure all these kids so they don’t become disabled adults”; the needs of autistic kids are said to cost so much money that society will be bankrupt “if we don’t act know.” This is alarmist rhetoric and overlooks the fact that, as Sarah points out, everyone “represents a ‘cost’ to society to at least some degree”)–those who are elderly, for instance.
It is the rhetoric that I wish to point out; when one goes before school districts and speaks to lawyers, one of course has to talk about costs: It costs a lot to educate my son but there is nothing to be afraid of about this. A lot of money gets spent on Charlie but this does not make him a “burden”—-it is the best investment I could make.
Bonnie Ventura
Apr 3, 2007 at 4:47 pm
Here’s a link to an essay about our society’s unfortunate tendency to reduce human life to dollars and cents:
http://www.ventura33.com/perspective
landonsmom
Apr 3, 2007 at 5:28 pm
To Lisa/Jedi….you are fortunate that the school system your son is in treats him that way with the attitude of it being “money well spent”, there are others of us, myself included, who live in school systems that seem to consider it a waste of not only money but time as well. I hope that your son continues to succeed and the school keeps that attitude.
AND TO UsaI, I hope that my son is able to accomplish what he needs to in order to take care of himself as you have done and the other person you spoke of as well….I think that, at least to my knowledge, you may be in a minority within the autism community.
I believe it would benefit parents like myself, who have young children on the spectrum, to have discussions with older children and adults of different ages on the spectrum to help give us a glimpse into the future of what our children’s lives can be like and how their needs may change over the course of their lifetime and what we can do as parents to help them reach their full potential.
When more children on the spectrum begin to get the help and services they need to be more successful in school, and social settings, then I think we would see that cost to society going down somewhat as they would be contributing more. I believe that having effective early intervention is a key in helping these children get a positive start in the right direction. I realize not every child will progress to the point of being self-sufficient or even semi-independent, but how many have NOT reached that goal because of inadequate services and supports and how much does that cost us in what they are NOT contributing to society?
Jennifer
Apr 3, 2007 at 7:59 pm
I often feel conflicted between my role as a teacher and the fact that I have been on the other “side” of an IEP table advocating for my brother’s needs.
That said — I work in what I would consider a middle-of-the-road school district. My program specialist is wonderful, but there are challenges, especially in the area of staffing (my class has not been fully staffed all year).
I would just like to say, with my “teacher” hat on, that those of you who are feeling unsupported by your school district please remember that there is very little a *teacher* can really do, especially about services such as OT, speech, etc. After spring break, I will be holding an IEP for a student whose OT AND speech therapist wish to decrease his services. I disagree vehemently (and suspect his mom will too), but ultimately, there isn’t anything *I* can do unless his mom refuses to sign the IEP.
With my “sister” hat on — I feel your pain. My brother needed OT from elementary school on and wasn’t assessed until we threatened due process in high school; he once went a whole school year without speech because the school didn’t have one. The cost for the make-up private speech therapy was enormous.
I agree with landonsmom. We should look at it is that for any money that’s invested in the education of a person with autism (or any other special need) will pay a rich dividend for that child as they reach adulthood. $10 of good education may negate $100 of make-up private speech therapy, to borrow my previous example.
Zaecus
Apr 4, 2007 at 1:37 am
Sadly, in this case, I have to mostly agree with the article. There are so many unnecessary obstacles placed in our way that the ones who are allowed to contribute to society, much less contribute to our full potential, are very lucky indeed.
That being the case, yes, there is a very high cost for keeping us disabled and not all of it is so easily quantified.
Moi ;)
Apr 4, 2007 at 9:18 pm
I have told our school district countless times that it will cost them more in the long run if they DON’T educate my son.
This is the kind of response we get.
http://www.phillyburbs.com/pb-dyn/news/113-03272007-1320723.html
Don’t worry, New Jersey, it’s coming your way….
Autism Vox » Number of Special Ed Students Up in NJ: Why?
Apr 9, 2007 at 10:21 am
[…] the state picks up only one-third of the bill.” Coupled with a just-published study on the cost of taking care of an autistic person over the course of his or her lifespan ($3.2 million), these figures can be used to potentially […]
Autism Vox » “It’s like being thirsty and ……….you can’t describe your intense thirst
May 2, 2007 at 3:26 pm
[…] article points out, in both a financial sense as well as that “human” sense. A study about an autistic person’s “cost to society” appeared earlier this year, though […]
Have an opinion? Leave a comment: