Autism: Grief, Gratitude and Gifts

Have you noticed that blue is the new pink? It’s Autism Awareness Month, and following the lead of breast cancer advocates, autism advocates are bluing it up to highlight a condition that is near to my heart.

Ten years ago I began writing about autism and the challenges it presented for my son and our family. I had one objective: to raise awareness and improve the quality of Jack’s life by doing so.

Early on I felt like a soloist in a choir. These days I feel like one in a growing choir comprising sopranos, altos, tenors and basses. We’re not all singing the same tune. But our voices are being heard.

Whereas there was once a dearth of information there now is a wealth of it. My Twitter feed pops with posts from other parents, professionals and people with autism – all weighing in from their respective vantage points.

If our society hasn’t mastered awareness we certainly have made a dent in it. I’m continually learning more about a complicated condition. Like an armadillo who burrows through tunnels, then emerges into the sunlight, I’ve found my way to greater understanding about the condition and my response to it.

I’ve likely experienced something Dr. Pauline Boss terms “ambiguous loss.” Ambiguous loss occurs when a major life experience creates a void. Unlike death, it doesn’t leave a definite mark on the calendar. Rather, it infiltrates the soul, creating sadness and longing and anger and uncertainty.

I now recognize how the ambiguity inherent in autism took me to my knees two decades ago. As a concrete-thinking, problem-solving woman, I was desperate for facts, for a prognosis. Yet they eluded me. The ambiguity untethered me.

Clarity arrived, to a great extent, in tandem with an uptick in Jack’s self-awareness and self-expression. As he became better able to identify his stressors, limitations, and desires, I was better able to understand him. From there I’ve been able to form a picture of what his life is likely to look like and to plan accordingly.

As my understanding has grown, my anxiety and sadness have ceded to contentment and pride. Writing and speaking about my experience has helped me to make peace with my ambiguous loss.

I hope that by sharing my insights I can help others to do the same. In that vein, I offer my wish list, my gratitude list and my joy list.

There are so many things I wish I’d done differently. I wish I’d realized I was a mom, not a carpenter with a tool belt. My son was not someone with a problem to be fixed.

I wish I’d understood autism was not a “dream thief” but an explanation for how Jack’s brain works.

I wish I’d understood the consequences of pressuring him to change certain behaviors. While “stimming” in public (flapping his hands) may embarrass me, it comforts him. I suspect that scolding him for a harmless behavior because it looks odd to others eroded a limited supply of self-esteem.

I wish I’d been less myopic; that I’d appreciated that autism is but one of many challenges people grapple with in life. I was not the only one whose life went in an unexpected direction.

I wish I’d taken a rifle approach instead of a shotgun approach. It’s impossible to evaluate the efficacy of any one strategy if you’re shooting in multiple directions simultaneously.

I wish I’d made more time for my husband, my other children, my family, and my girlfriends. Tomorrow is never guaranteed.

I wish I’d worked harder to find help instead of hoarding the responsibilities or foisting them on my family.

I wish I’d understood the correlation between stress and health.

Time has shifted my perspective. Wistfulness is ceding to gratitude. Gratitude is such a better state of mind.

I’m grateful I’ve found a new perch from which I focus on the blessings, not the disappointments.

I’m grateful for the teachers who recognized and nurtured Jack’s spirit and sense of humor.

I’m grateful for the professionals who patiently work with him to develop his independent living skills. They surely do not do it for the pay.

I’m grateful for the family and friends who have indulged my rollercoaster ride, for I would have been unbearably lonely without them.

As I’ve focused more on gratitude than grief, I’ve discovered that gratitude and joy are great partners. Delight is such a great antidote for despair.

I delight in Jack’s honesty.

I delight in the way he hounds his sister-in-law to send daily photos of his nieces.

I delight in the way he is taking charge of his life, relying less upon people and more on the systems and strategies we’ve developed for him.

I delight in the way he is mastering social media to communicate with an expanding network of people, sending emails with funny videos to share with a chuckle.

I delight in the fact he feels emotions deeply and expresses them often.

I delight in the fact that he tells me what he needs and respects the advice I offer.

Most of all, I delight in his generous spirit. For 11 years ago he made a selfless gift to his younger sister. With her life hanging in the balance, Jack donated the bone marrow – his “magic mojo” – that eradicated her deadly blood disease. He demonstrated that, regardless of our challenges, we all have gifts to share.