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Five life lessons I've learned being a caregiver to my son with autism

Below is a post by Mary P. Miller, a retired professional fund raiser and mother of three children, including a 46-year-old son with autism about whom she has written a book “So Far So Great!” Mary is currently leading an effort to raise funds to build housing for autistic adults on Cape Cod. Visit Mary's website here.

“What’s wrong with that kid anyway?” The words cut through the laughter and conversation at a family gathering on Cape Cod in August 1970. My husband’s cousin cocked his head to one side as he stared at my eight month old son, Jay, as if a different angle would make sense of his odd behavior. Tears burned behind my eyes. All the quiet worry I had stuffed deep inside my gut came roaring to the surface. I had no answer to his question. Little did I know then I would be embarking on a lifelong quest for both answers and help, seeking a path where none existed.

Lesson 1:  Don’t get lost in denial. It will cost you precious time.

When Jay was 18 months old I was still in the dark. Why wouldn’t he look at me? Why was he so slow? Why did he have such strange mannerisms? Desperate for answers, I was at a loss. My doctor continued to reproach me for comparing Jay to his sisters, repeating “within the range of normal.”

 I no longer trusted his and the other familiar voices around me, so I began to research on my own – the library at UMass Amherst. A world of dread began to unfold as I went from one textbook to the next. The word AUTISM leapt from the pages. Words from Leo Kanner and Bruno Bettelheim described my son to a tee – and described me as cold and obsessive, a “refrigerator mother.” Was my son autistic? And worst of all was it my fault?

Lesson 2:  Influential professionals have been dead wrong in their theories about autism. Listen to the experts, but don’t succumb to poor judgement.

Thunk, thunk, thunk. Jay had awakened from his nap, but rather than cry out to be picked up, he rocked violently, his crib scraping along the floor and the sickening thunk of his head banging against the headboard. At two years old he engaged in an array of full blown autistic behaviors including kicking, biting, screaming tantrums. I was lost in maze of frustration and guilt. “We can’t do this alone,” I said to my husband. “We’ve got to find to find someone to help us.

”After many dead ends, I turned to the local mental health center in our town and made a gut-wrenching call for an appointment. It was there I met Dr. K, a young psychologist with a newly minted PhD who had some ideas.

Lesson 3:  Leave no stone unturned. Seize every opportunity. Pick up the phone.

We sat nervously on folding metal chairs, my husband and I, two other couples and Dr. K, who asked each of us to come up with one troubling behavior. “One?” I said. “There are dozens!”          “Yes,” he replied, “And now we’re going to look at ways to help by altering one behavior at a time.” There it was: our introduction to behavior modification, a forerunner of applied behavior analysis. None of us had ever heard of it! In 1972 it was a relatively new weapon in the war chest of mainstream psychology. I couldn’t wait to tell the pediatric neurologist we had been seeing in Boston about our newfound tool. He said he wasn’t convinced of the effectiveness of the behavioral approach, but it probably would do no harm. Though crestfallen at his response, I was determined to stick with what felt right.

Lesson 4:  Stick with what works. Keep the effective therapy going.

And stick with it we did. Our victory doesn’t imply a “cure” for autism. It means we won over the monsters of fear, guilt, anger and despair. We broke down the ramparts of ignorance and the barriers to effective services. We beat autism by embracing it. Our journey was long and tough. At times I was lost in a maelstrom of roadblocks, feeling defeated by achingly slow progress and profound isolation. But our success is now clear. Though limited, Jay concentrates mostly on what he can do. He travels by bus, cooks, cleans and takes meticulous care of himself and his belongings at his group home. He has two part time jobs and works out at a local gym. He continues to spread his wings. This is our victory.

Lesson 5:  Growing and learning never stop. Jay is the proof.

Learn about the other 25 lessons I learned in my book “So Far So Great!” which can be purchased from my web site autism-lessons.com.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.