Mainstream & hope?

- Lora Perry, MS, BCBA

My colleague Mark Steege, PhD, coined a phrase to describe the typical process of the education of children with autism in public schools: “mainstream and hope.” This widespread practice is defended by some special educators on the logic that they are complying with the Least Restrictive Environment (LRE) requirement under the Individuals with Disabilities Education Act (IDEA). For many children with autism, however, mainstream and hope is a disaster.

First of all, let’s look at what the framers of IDEA really intended: children with special needs should be educated in the least restrictive effective setting for that child. A setting in which the child is distracted by visually busy classrooms, overwhelmed by a bustling student body, or taught by an unqualified and inexperienced individual is more isolating to the child than one set up specifically to meet his or her needs.

Secondly, IDEA promises a “free and appropriate education” (FAPE). As I see more and more school programs for children with autism, I find “appropriate” can mean, at best, “adequate,” “good enough,” “not too costly,” and “not too troublesome.” “Appropriate” frequently means a few hours a day with a teacher minimally qualified to teach children with autism. “Appropriate” can mean a child spending six or eight years of his life in a classroom with all the same children, and often the same teacher. “Appropriate” can mean not expecting too much–not trying to teach things that teachers “know” a child with autism cannot learn.

It can mean letting our children through the schoolhouse door, but not ensuring that they learn anything much once inside.

It is common practice in “mainstream and hope” – type programs for a child to be completely included in a regular education classroom with, at best, an “aide” (in some cases, a student’s grandmother), and a regular Ed teacher. Teachers charged with educating children with autism, and individuals who support those efforts, are likely to have no qualifications for teaching children with autism at all, let alone for doing so using validated methods. This falls far short of the educational integrity parents of typically developing children demand for their children. In other words, the diagnosis of autism may produce, in addition to all its other heartaches, a fundamental injustice: these special children can be denied effective education delivered by qualified individuals.

We must stop pairing our least qualified “teachers” with our most challenging students.

No matter how many times we sit with Pupil Education Teams and are told, “it’s not about money, it’s about LRE,” we know it’s really about money. Professionals qualified to supervise and deliver an autistic child’s education are scarce and expensive. Centers and community supports comprised of the proper resources with which to teach and treat children with autism have been springing up in many states, but they are costly. Somehow I think if we could figure out how to get the costs more comparable to those of a public education for typically developing children, there would be less conflict over utilizing these resources, and the passionate defense of “LRE” would diminish.

We need to change how we think about our educational investment in children with autism. The current perspective is nearly always based upon (inadequate) yearly special education budgets and “LRE.” A smarter and higher cost/benefit perspective is one of long term investment. Imagine this: intensive, year-round, home-based effective intervention delivered by qualified individuals beginning immediately upon diagnosis. When the child has acquired specific predefined skills necessary to ensure success in more inclusive settings, begin to expand the child’s world to those settings using supported inclusion (which is a detailed process, not mainstream and hope.) As the child acquires more predefined skills, fade the supports. Such a well planned and disciplined long term vision of how to educate children with autism just might emancipate enough children from special services to liberate money to fund this longitudinal model.

Not all children with autism will acquire the skills necessary to successfully mainstream. The team overseeing the child’s education should continuously evaluate the rate of the child’s learning. If this is determined to be slow, take a hard look at all of the components of the program. Is the staff sufficiently qualified? Do they get adequate direct contact supervision by a qualified professional? Are we teaching to the child’s mode of learning? Is the program sufficiently intensive? If the answers to these questions are legitimately (and not conveniently) yes, the plan can be altered at any time. But if we set the bar high at the outset, we allow the children, not some predetermined political or budgetary condition, to show us how far and how quickly they can progress.

This is in contrast to typical public school programs offered for children with autism, which are frequently necessary throughout the students’ entire school career; when the students “graduate” from public school at age 21, they enter the publicly-funded adult system of care for the rest of their lives.

As adults, individuals with disabilities have the legal right to live in the most integrated setting possible. As more and more very fortunate children with autism gain access to the effective services they need, we are seeing longterm outcomes improve, including recovery from autism. It is only a matter of time before some desperate parents band together and sue someone, anyone, for condemning a child with autism to the likelihood of lifelong dependency due to the absence of effective childhood services. This void goes by different terms in different circles, but among them are malpractice, neglect and abuse.

Mainstream and hope is a bad investment. It breeds dependency. Fortunately, I have been blessed with a particularly insightful special education director. As a consequence of her investment in good, intensive, effective intervention for the last three years, my son Jason is becoming independent and able to learn from mainstream settings. It is our hope to have Jason fully and meaningfully mainstreamed in a year or so. Based upon what we’ve seen around us, this would be unlikely had he been in a “less restrictive” setting these past few years. I fully expect Jason to defy the odds of being dependent upon others for the rest of his life.

As parents and advocates, we need to ensure that mainstream and hope becomes a relic of the past, an outmoded ideology that we saw fit to replace with a system guaranteed to maximize each child’s potential for the fullest possible development, integration, and independence.

What’s the Alternative to Mainstream and Hope?

1. Pupil Education Teams must agree upon objective, measurable criteria by which to determine when a child can benefit from mainstream settings. My Pupil Education Team and the special purpose school for children with autism where I work use the supported inclusion criteria outlined in Behavioral Intervention for Young Children with Autism.

2. Plan the multi-year path. Equip the child with the skills necessary to succeed in mainstream settings based upon objective criteria.

3. Prepare the school environment with the environmental and human resources supports the child needs. Be sure to insist upon properly trained and supervised staff. Ask for copies of resumes and CVs to verify qualifications, and check references.

4. Re-commit to the value that when the framers of IDEA invented the Pupil Education Team, they truly meant it to be a Team process, very much involving and honoring the judgement of parents. Parents should attempt to work cooperatively with all levels of school administration, but when their voices are ignored and their children’s interests are betrayed, they should not hesitate to apply for redress through any means, including legal, at their disposal.

This article originally appeared in an issue of “Science in Autism Treatment”, the newsletter of the Association for Science in Autism Treatment (ASAT). It may not be republished or reprinted without advance permission from ASAT. For reprint permission please contact reprints@asatonline.org