- Yet Life Keeps Coming
While the guidance offered to authors of commentary articles suggests they not write about their personal experiences, the fact is, I would not be here were it not for my personal experience as the mother of a young man with autism spectrum disorder and other diagnoses. Though I left a successful writing career to become a special education teacher and then a Board Certified Behavior Analyst (BCBA), it was not, strictly speaking, a career decision. It was a mom decision. When asked how I came to where I am today, I say, “Well, one day, I looked across the table at an individualized education program (IEP) meeting and asked myself, ‘Could I do as good a job as the people sitting across from me?’ And the answer was, yes.” Some people believe I am joking. I am not.
To parent a child with autism is to be confronted daily with a dream of his future and the realization that you probably cannot achieve that alone. Instead, you will rely on a world of professionals, institutions, and systems to make it happen. How well that works out for you depends on a number of factors that should not matter but ultimately do: where you live, how well funded and law abiding your local school district is, how much access you have to qualified professionals, and how well your state agencies charged to care for individuals with disabilities after they leave school does its job. Though essential, love, dedication, and hope may not be enough to hoist your child over the hurdles, whether they are set by immovable bureaucracy or mercurial brain chemistry. We each strive to clear the track, to level the road, and I chose to do that by “going pro” and becoming a small part of the system that will serve my son and countless others with ASDs throughout their lives. Even so, I find myself as daunted by the transition to adulthood and the prospect of preparing him for a life without me as anyone writing here. Anonymous Three, who recounts her son’s struggle for independence, captures the questions that most of us might never get to answer but can’t stop asking: “What happens when we can no longer care for him?”
When a pediatric psychiatrist diagnosed my own son with Asperger disorder in 1997, I wished to be one day free of the obligation to explain his diagnosis to people who had never heard of it. Today, thanks to major campaigns to promote autism awareness and the public recognition of a handful of celebrities with autism, there is less explaining required. It seems that everyone knows someone who has a child with autism, and everyone knows Temple Grandin’s story. Contrast this to the world of 1993, shortly after my friend and coauthor Barbara L. Kirby (Romanowski Bashe and Kirby 2001, 2005) turned to the internet to make sense of her son’s Asperger diagnosis. There was no Google, no Bing. It would be months before the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), which included Asperger’s for the first time, was published. Local doctors and teachers had never heard of it; parents and professionals were still gathering facts, trying to put the pieces together to form a coherent picture of what it meant to have autism. [End Page 183]
Some things are different now, nearly twenty years later. Professionals, parents, and individuals with autism have developed a culture of autism, complete with opposing views on everything from applied behavior analysis and classroom inclusion to medication and guardianship. As a number of narratives illustrate, parents often find themselves making tough choices around these issues, and the best option in the abstract is not always the best option or even a possibility in the real world, on the ground. These narratives depict how the parents of individuals with ASDs struggle, sometimes mightily, to bridge the gap between what should be in terms of reliability of diagnosis and prognosis, access to effective, affordable, evidence–based education, treatment, and intervention, and—perhaps most important—meaningful, practical, realistic planning and programming for successful transition to adulthood. And...