Special Children, Special Parents
B Y D O U G B O R R I E , P H . D .
When a child is born with a disability, the workload of parents grows to unimaginable proportions. If being an involved parent under normal circumstances requires just about every ounce of energy, being an involved parent of a disabled child requires that much more. Nowhere is this truer than when the disability is autism.
When it comes to autism, what we don’t know still outweighs what we do know by a wide margin. While we have come far since Leo Kanner first identified the disorder sixty-five years ago (autism is now seen as a disorder of the brain rather than emotion) the answers to questions of most concern to parents remain elusive.
Perhaps the most vexing question is “can my child be cured?” And while those in the professional community speak of treatment rather than cure, there have been cases where autistic children do seem to come out of the wilderness imposed by the disorder. But these cases are so rare that they offer little guidance to others who want the same for their children, and can lead to raised expectations and dashed hopes.
What we do know is that breaking through to a child who is autistic is time consuming, repetitive, and expensive work. It also comes with a loudly ticking clock that keeps reminding parents that the greatest gains are made the earlier this work starts. Against this backdrop is the fact that finding the appropriate treatment is difficult, and finding a way to pay for it is even tougher. Optimal treatment (at least eight hours a day of intensive, one-on-one work with an autistic child) isn’t readily available. Many states are required to pay for “adequate” rather than “optimal” services, with most parents unable to pay for the difference. Imagine the frustration of parents who know there is a better treatment but they can’t afford it, all the while hearing that ticking clock in the background.
And there’s more, because, as with many other disabilities, no one will come to your door with a wheelbarrow full of research dollars, no one will insist that individual education plans include the most current “optimal” services, and no one will understand that raising your autistic child requires the support and resources of others, unless you tell them so. And, you do. It is fair to say that parents of autistic children have been the catalyst for the most significant advances we’ve had in the field of autism since it was first diagnosed. From abandoning the earlier “Refrigerator Mother” theory of causation, to the more recent success in getting insurance companies to include autism as a covered diagnosis, parent advocates are the ones pushing for answers and for the resources needed to find those answers. In fact, without parent advocates, progress made toward a cause and cure would be decades behind.
So, parent advocate, take solace in the success you’ve had, and forgive yourself for the things you couldn’t get done. Have patience with a system that is always slow to change and always short of money. Rest when you can and fight when you have to. Your work isn’t easy and only ends when your child has everything he or she needs. It is a fortunate thing that we love our children unconditionally. It is even more fortunate that when one of those children is vulnerable, love is just the start of what we want to give them.
