The Individuals with Disabilities Education Act (IDEA) and Individuals with Disabilities Education Improvement Act (IDEIA) give parents the option to enroll their child with autism in an inclusive education program: that is, in a classroom designed for non-disabled peers, with additional 1:1 aid and/or a modified curriculum. Millions of dollars are spent on inclusive education—but little evidence shows its effectiveness. These children still struggle to obtain greater independence, greater academic advancement.
About 90 percent of adults with autism spectrum disorders, including the intellectually most able ones, are unemployed as adults. Why? They are unemployable. We have failed to prepare them for jobs where they can succeed. Much of special education for individuals on the autism spectrum in middle and high school is inadequate. Teachers can have their heads in the sand when it comes to where they believe their pupils will ultimately be able to go—even though teachers have the clearest idea of what a given child knows and what it takes to teach that child. Educational administrators prevaricate to parents and set unachievable benchmarks with unrealistic goals. Doctors very often equivocate and sidestep questions about prognosis, even when parents directly ask about their child’s future capabilities. There are many children with autism who are painstakingly taught academic subjects for years and years by the most excellent and caring educators and therapists—though it is plain to any truth teller that such a child will never get to the point where he or she can take a place in a society that requires real reading comprehension, writing composition, or the math needed to manage income or a household. Imagine being a child, then a teen, then a young adult drilled incessantly in things you can’t fully understand or remember, rather than being allowed to develop relative strengths and talents as a way of finding your niche.
Outside America, where academic education is not considered a birthright or a prerequisite for a good life, individuals with autism and other disabilities may actually have more opportunity to take part in meaningful societal activity—from work on a farm or in a factory to community-based centers of care for the young, disabled, and elderly. In many places outside America—some places with as many resources as in America, some places with far fewer—raising a child with a disability is not all about getting the child academically trained. Such children may be trained to care for themselves first, then to participate in family and community life, and then to participate vocationally, as they can, if they can. This is simply accepted to be what is possible.
In America, we do a disservice to individuals on the autism spectrum by often teaching children with autism things that are unbearably hard for them to learn. When it seems they can’t learn it, we say they are inattentive and can prescribe a medication for that. When we keep trying to teach those same things, still beyond the individual’s capacity, and they become angry and agitated, we also have a medication for that. We just keep trying to teach things the individual shows little inclination to learn. Meanwhile, we ignore the teaching of more simple skills that improve a person’s independence and thereby the quality of daily life—like taking care of personal needs, preparing the foods they eat, caring for the place where they live, and developing a range of healthy leisure activities. As we keep trying to teach things that are insurmountable, we risk making the individual feel like a failure, anxious, or depressed. We risk having parents feel they have failed their child and that the system of care they depended on has also failed them because the system has not delivered on its promise to teach their child to read, write, and do math. These parents are infuriated, and there is no one to reassure them when, in fact, most often they have done their best by their child, maybe even more than for their typically developing children, who may have not seemed to need them so much.
There are a tremendous number of us who want to help in whatever way we can…. However, altruism alone does not necessarily lead to success.
Americans care a great deal about helping those less able. Absolutely, everyone deserves a chance to get better. There are a tremendous number of us who want to help in whatever way we can. Altruism is very American. When we are 10 years old, it makes us Girls Scouts and Boy Scouts. When we grow up and go to war and win, it leads us to “nation building” to affirm that our victory is meaningful to the conquered.
However, altruism alone does not necessarily lead to success: Only a small number with autism will get “better” enough to make decent adjustments and find a niche for themselves in life. A few will thrive.
I am not trying to lower expectations for children with autism and their families, but rather introduce realism to our discussion about what autism is for most families and what can be done to instrumentally help children and their families living with autism in America today.
We have had rainbow-high horizons in autism for a long time now. We’ve been chasing the pot of gold, the cure for autism, for a good 30 years, but the cure still is not in sight. I’ll argue here that for families living with autism today, their lives will not be shaped by any cure at any time in their lives or the life of their child. Rather, we need to turn attention to “saying it like it is,” and then doing something about what “it” is. This means parents need to know both what to do and what may result from the help they provide. A child’s prognosis can be ascertained to some degree with increasing detail as different treatments are given, response to those treatments is examined, and the child continues to develop.
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