Autism and Asperger Articles, Bill Stillman, Award-Winning Author

Autism Parents in Victim Mode: The “Why Me” Syndrome

by William Stillman

Pennsylvania’s annual state budget is, as of this writing, a month-and-a-half overdue with no pending resolve in sight. Our governor has notoriously advised that everyone will need to buckle down and tighten up, adding, “I don’t want to hear any complaining.” This may seem like a stringent attitude but, in granting him benefit of the doubt, I have to believe the governor is doing the best he can under extraordinary pressure (hey, I voted for the guy).

In considering the ubiquitous proclamation for no complaining, I thought about the state of autism affairs, and contrasted my governor’s position with a documentary about parents of children with autism I watched about a year ago. In it, a group of parents are interviewed for their perspectives on raising a child with autism and the impact it’s had on their lives. To be blunt, the film’s a real downer. The majority of the parents devote their airtime to venting, lamenting, and, yes, complaining about the terrible toll autism’s taken on them, the hardships they endure, and the financial or social sacrifices they’ve made. Perhaps the documentary’s intent is to highlight families’ struggles such that funding for services will be increased, not cut (after all the squeaky wheel gets the grease); but, honestly, their message lacks grace, humility, and acceptance—especially in the moments they are disparaging their parental roles in front of their own children.

I encounter this too—the “why me” syndrome—in certain people who refuse to see the glass as half-full. For many parents, it is only natural that, following a child’s autism diagnosis, there is a period of regret and mourning a vision lost. But to persist in this mindset, such that it permeates one’s everyday life, is not only unhealthy, it’s destructive. It’s unhealthy because of the constant, internal ricochet for second-guessing one’s parenting skills and choices; it’s destructive because the negativity of continual complaining will erode the relationship those parents have with their own children.

Everything matters. Every word, every gesture, every interaction matters in how our children with autism are perceived and received by others, beginning with a tone parents set. I recall being quite saddened to hear an elderly parent, who is also a prominent autism advocate, publicly refer to his adult son with autism as an asshole. This speaks volumes about the nature of their unachieved relationship, the quality of which will likely always lack reverence and respect. In another instance, I was at a conference responding to an audience member’s question. In attempting to discern individuals that might serve as local resources to the questioning mom, I asked for a show of hands from those who could help her. And yet, as I was leaving, the same parent ran up to me complaining that she hadn’t connected with any of those who volunteered their assistance.

Most recently, during a break in a presentation, I counseled another mom about some pressing issues involving her son. I instructed her on the steps to take to correct a potentially harmful situation. When she approached me a second time, I reiterated the same information. As I was leaving, she, again, approached me and I gave her the same instructions but advised that I needed to leave, inviting her to follow up by e-mail. She did just that, informing me that she was devastated that I “walked out” on her.

At some point, for parents such as these, the complaining needs to cease in favor of acceptance for one’s lot in life—to represent one’s child authentically. Autism already bears the pall of gloom and doom perpetuated by those who seek to pathologize it unreasonably. Parents, kindly reclaim your children with autism, and embrace your role as parents (not just “special needs” parents) with all the dignity and resourcefulness you can imbue this responsibility. It will make the difference between projecting a draining and debilitating “why me?” attitude instead of one that proudly reflects “well, why not me?” The parent of whom I just spoke was clear in telling me she was scared for her son. My reply? Then choose not to be a victim.

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©2009, William Stillman (www.williamstillman.com)