The Autism Conundrum
by Gil Eyal - May 28, 2009
The author of this commentary shows how the debate about the costs of educating autistic children has its origins in the interstitial position of autism between the ethico-economic models of illness and retardation.
On April 19th, the New York Times carried an article titled Tug of War Over Costs to Educate the Autistic. It reported on the Brooklyn Autism Center Academy, a private autism-only school, where tuition reaches up to $85,000 a year. The article noted that as the number of autism diagnoses has risen, the extraordinary cost of educating the children has become a growing point of contention. While most children with autism in New York City and around the nation attend public special education classes, there is a significant group among them who require intensive one-to-one teaching ratios. In New York City, only one public school offers this option for only 28 students. The City is by no means unique in this respect. What are parents to do? They can choose a private school from a list approved by the state, and have their tuition, which ranges from $30,800 to $48,100, paid by the citys Education Department. Or, if dissatisfied with these schools, they can choose a private school not on the list, pay out of pocket, and then seek reimbursement by the City.
It is easy to be outraged over $85,000 tuition paid out of public coffers. It is also easy to get up in arms over the insinuation that parents are demanding anything other than their childrens right to free and appropriate education. It is harder to understand how we arrived at this impasse and how we might seek to reconcile these claims. A historical perspective on the recent autism epidemic could, perhaps, begin to indicate a way out.
Why have the rates of autism been increasing exponentially over the last two decades, settling around the magic number of 1 in 150 kids, certified by the CDC? While some people believe this is an epidemic caused by vaccines or environmental pollution, the opinion of the medical establishment is that the increase is most likely due to changed diagnostic criteria, greater awareness among parents and service providers, and better surveillance and detection services. There is also significant and mounting evidence that a large part of the increase is due to diagnostic substitution with mental retardation. Simply put, children who in the past would have been diagnosed as mentally retarded are now diagnosed as autistic (though sometimes with the concurrent diagnosis of mental retardation).
What should we do with this evidence? What does it imply with respect to the mounting costs of educating autistic kids? I cite it not in order to argue that either diagnosis retardation or autism is the correct one. I am a sociologist and do not have the expertise to make the call. I cite it because I think it can help us revise the narrative within which the story of autism is told, and therefore may also help us think differently about the challenges it poses to public education. Instead of an epidemic, I suggest we think of the recent rise of autism as an aftershock of the real earthquake deinstitutionalization of mental retardation. The deinstitutionalization of mental retardation was a massive and lengthy process, beginning in the early-1970s and extending well into the 1990s. It went the furthest with respect to children. At one point in the mid-1960s, children fourteen years or younger were the largest category of first admissions to state institutions for the mentally retarded. By 2006, however, they constituted only 0.4% of the population of state institutions and in 22 states there are no longer any inmates younger than 15.
Importantly, the deinstitutionalization of mental retardation was also an ethical revolution. Children who have difficulty communicating and interacting with others and who exhibit difficult-to-manage behaviors children we currently refer to as developmentally disabled are now home, not in an institution, and they enjoy a legal right to free and appropriate education in the least restrictive environment. The content of this right was spelled out by the philosophy of normalization, namely that an existence as close to the normal as possible was both the desired goal of educational/therapeutic intervention and a potent tool at its disposal. The current autism conundrum is the result precisely of us coming face-to-face with the implications and tensions of this ethical revolution.
In the late-1970s, parents of autistic children organized in the National Society for Autistic Children (NSAC) fought hard so that legislation regarding the rights of the developmentally disabled would be non-categorical, i.e. it would not name any specific disability but simply focus on the functional limitations shared by all developmentally disabled individuals. This was entirely in accordance with the spirit of normalization. Individuals should be supported on the basis of their needs without using (relatively ambiguous) diagnostic categories to make invidious distinctions among them. Thirty years later, however, the rise of autism signals that the warranty sought by the non-categorical approach is no longer adequate, and fresh thinking is needed.
How can we determine whether the education provided to a disabled child is free and appropriate? We can follow the reasoning of hearing officers presiding over due process hearings to understand the autism conundrum. Taking into account the childs functional limitations, free and appropriate education should provide sufficient support services to permit the child to benefit educationally from instruction. How much benefit can be reasonably expected? The quantum of educational benefit necessary to satisfy IDEA varies with the potential of each pupil.1 How could one determine or assess this potential? Herein lies the crux of the matter and the challenge posed by autism.
In some cases, as for example deafness or blindness, it is obvious that there are no inherent limits to the childs potential, only external ones. In this case, the paradigmatic case with respect to which case law developed, the support services are strictly equivalent to physical prostheses, and education operates with the logic of restorative treatment making able to become fully able-bodied. The thinking of hearing officers is guided here by the model of illness and cure: it is illegitimate to fix a limit on expenditure, because one is merely restoring the conditions for the student to realize her inherent potential. Further, there could be multiplier effects that make even intensive and costly treatment economic. If there was an $85,000 device that put blind or deaf children on par with seeing and hearing children, we would not hesitate to fund it, and we would trust it to deliver results immeasurably greater than the investment.
A different logic seems to guide hearing officers interpretation of the law in cases involving a severely retarded pupil. They explain that the law requires meaningful benefit, which is generally taken to mean progress as opposed to regression, but that the state is not required by IDEA to maximize the childs potential.2 In practical terms this could be, and often is, interpreted to mean simply that the goals annually set must show some incremental improvement, or put differently, that the only potential ascribed to the severely retarded is the potential to have a potential at all, i.e. not to regress or stay the same from year to year. There is nothing restorative about this kind of education, and in reality, as the years pass the IEP goals do not go much beyond the attainment of self-care skills. Our thinking in the case of retardation is guided by a model opposed to that of illness and cure. As a mid-1970s psychiatry textbook pronounced: retardation is not illness, but simply slowness, like a bottle that is filled through a clogged funnel. This is not a medical distinction, but an ethico-economic one. The implication of this distinction is that the amount of improvement is going to be exactly the same as (or even less than) the time and effort of intervention, that there are no multiplier effects. In the past, this sort of distinction operated to relegate developmentally disabled children to a medical and fiscal backwater.
The significance of autism lies precisely in its capacity to navigate between these two poles, where there are no clear signposts, and thus to rescue developmentally disabled children from the backwater to which they have been consigned in the past. It is neither illness, nor retardation, but somewhere in between. Everybody knows it is a chronic condition that cannot be cured, but nobody knows what quotient of potential is lying dormant in any particular autistic child. Thus, the very basis for distinguishing what is restorative intervention and what is not is disrupted. Autism shakes our complacent beliefs about the developmentally disabled and shows us how little we know. With respect to autism, everybody seems to know that there is a critical window of opportunity during which treatment may amount to restoring the fullness of potential, but nobody knows how wide this window is or when it is time to call it quits. Hence the ethico-economic distinction between illness and retardation no longer makes sense.
So what from one point of view may appear as relatively privileged parents attempting to usurp public monies that could be used to improve education for poor children, would appear from a different point of view as the vanguard of an ethical revolution doing away with a pernicious bias against intellectually or developmentally disabled children. Perhaps the problem is not with the capacity of the parents of autistic children to overturn established patterns of underfunding, but that the revolution they began simply has not gone far enough. There are two ways in which current struggles are limited: first, the fact that the resources and attention autism is able to command are denied to mental retardation; and second, that all these resources and attention are concentrated on early intervention, on the putative window of opportunity, thereby leading to relative neglect of the more intractable problems and long term needs of older, more severely affected adolescents and adults, whether autistic or otherwise intellectually disabled.
1. State of New Jersey, OFFICE OF ADMINISTRATIVE LAW, OAL DKT. NO. EDS 1547-05 AGENCY DKT. NO. 2005 9682.