Tonight Adam asked to be carried to his bed. “Carry!” he implores. He has a determined look in his eye. Usually, he climbs into my lap and expects me to carry him to his bed. So I let him again, and cradled him in my arms, trying not to hit his extremities in the doorway.
“Adam, you are getting too big for this now,” I say, my neck and back feeling strained. I carry him into his bedroom and plunk his heavy body on the soft bed.
“I’m not a caterpillar anymore!” he says melodically, and smiles.
“That’s right Adam!”I am pleasantly surprised. It is a rare lucid statement. With all his movements and chants, for the unexperienced, it is difficult to believe Adam is understanding, or paying attention to, many things. Yet I’ve always known he does, even on the days I get frustrated when he can’t respond.
There is a story that Adam The Caterpillar and the Polliwog by Jack Kent. He is using the line from that story and I know he has associated my discussions about him becoming a big boy to the story. “You are not a caterpillar anymore. You are a butterfly!” Adam lifts his head from his pillow. With a big smile, he plants a kiss on my lips and lies back down, contented. I turn out the lights and say goodnight.
I’ve been thinking a lot about Adam and his growth over the past year. Over the New Year, I’ve been thinking how this will be Adam’s first complete decade, and my first decade as a mom. I simply cannot believe that it’s been that long as I remember our journey with autism and with each other.
Adam was diagnosed with autism at 19 months of age and I began writing privately in coffee shops about our experiences when Adam spent a couple of hours in pre-school. I started The Joy of Autism blog and running the events of The Autism Acceptance Project when Adam was three years old. Reaction to my blog and title of the events (The Joy of Autism: Redefining Ability of Quality of Life) were met with both applause and contempt. Today, we read about the joy of autism and parenting an autistic child much more often. Then, parents who were struggling with challenging behaviours and expectations of a cure, challenged me. What did I know?! questioned many parents of slightly older autistic children who were being phased out of services. Wait until your autistic child grows up, then you’ll be in big trouble; you’ll see what we are going through. He won’t be cute forever! I suppose we’ve now reached that same stage. While Adam can still be cute, he is quickly becoming a pre-teen.
In the past decade, we have struggled with acceptance, understanding from others, and in finding a great education. We deal with stigma, and having to justify why we behave as we do. As parents, we are sometimes pitied or called heroes. It’s hard to be a normal parent in the “outside world,” even though autism is our normal. Having to justify our children, and their right, need, and desire to be included can be exhausting if not downright heart-breaking. We keep going out there every day as we brush disappointment off our weary selves. I suppose this is brave.
I also realize, that as bloggers, writers, and advocates, everyone has an opinion. When there is no one cause for autism that science can find, the speculation gets polemic. The nexus of contention seems to be the nature of autistic being and intelligence; is autism a natural, “alternative” way to be human, or is it a defect of the human condition? Of course, I believe it is what it is, although throughout the years I’ve always questioned my own thinking. I still come back to the value of human diversity. Whatever the reason or the cause, I value Adam for who and what he is, how he thinks. I also recognize and try to assist his challenges. I cannot call him a defect. He is whole, loving, able, with his disability. I can’t think of my life without him in it. He requires the extra effort of all to understand his differences in order to enable him. Being constantly challenged for my beliefs has been exhausting and emotional at times. The blessing of this first decade has been the deeper recognition and understanding of the values I held instinctively, and early on.
In the past decade of writing and talking about Adam and autism, I’ve been torn between sharing parts of our experience and our privacy. In the hopes of helping Adam’s future, I’ve seriously thought about whether or not to close the blog, especially since Adam’s first decade also included a divorce — a challenge for any child, and an extra challenge for Adam. I decided that not only does writing about experience help me as his mother, but that sharing is a gift we both give and receive. I was helped by the writing and sharing of other autistic people and parents. I don’t want to fear the sharing, although I’m continually challenged by this. Of course, it is my duty to protect Adam and his privacy, so I believe that every parent must choose our stories carefully. I’ve decided to continue writing.
I also can’t help thinking about the parents who had autistic children ten years before us. Many were the parents in Canada who argued for ABA to be covered as medically necessary treatment (the political argument still exists). Some parents found out about Dr. Lovaas in L.A. and even moved down with their children for treatment, and I may have done the same thing if Adam had been born earlier — maybe not. Adam was born in 2002. In 1992, ABA was turned to as the hope for the education and life skills training for autistic children. It was believed that ABA would be the way to shape the child’s behaviour and normalize them, in time for school. It seemed much more humane and reasonable than “holding therapy.”
The window in which to do this, they were told (and we were too) was five to six years of age. If a child could not talk or learn normally by then, the window of opportunity would close. The “early diagnosis is key,” notice, is also used for cancer, and I know from personal experience that yes, better to get a cancer early (another part of our past decade). Science, parents, autistic people, however, have proven that there is no such thing as lost opportunity. Autistic people need continued life-long learning. I like to think of that all of us require continued training throughout our lives to put this in perspective.
New methods and teaching approaches have been explored and integrated into many classrooms. ABA therapy has, to some extent, integrated different therapies into their own practice. By “operationalizing” these other methods and taking “data” it seems to have been rebranded as “Positive Behavioural Therapy” or “Support. While there is still controversy there because the therapy still doesn’t fully address the abilities and the nature of autistic perception and intelligence, one could view it as a step forward.
It is also difficult to let go of labels. Political policies are built on them. They are made for autistic people largely by non autistic people. Definitions and systems must be defined in policy, and this has been difficult for autistic people because their issues have not fully been acknowledged. So we must be cautious not to lose sight of the progress have made in the science regarding autistic ability, perception and intelligence. We must continue to work to answer the question on how we can best educate and address an autistic person’s needs, and how an autistic person can participate in society as they are. The dyslexic community had to learn and now so must we.
Ten years before ABA took hold in Canada, in 1982, Lorna Wing wrote her pivotal paper reviving the work of Hans Asperger and spotlighting Aspergers sydrome in her paper, Aspergers Syndrome: A Clinical Account. It was ten years after that paper that Autism Spectrum Disorder label and definition of the “triad of impairments” made it into the DSM IV. In thinking about decades, I thought back to 1972 when Ontario’s last mental institution was shut down. It freaks me out to think that Adam’s life could have been so very different thirty or more decades ago. He would have been even more segregated than he is today.
As I measure the decades against autism treatment, and treatment of autistic people, I see that in 2012, we’re learning more every day. We do so even in a perilous time when “designer babies” arguably threaten the continued existence of people with disabilities. Many communities like ours and the Down syndrome community grieve the loss of others “like” them as a loss of community. We’ve launched autism acceptance movement, akin to other civil rights movements, for the equal and fair regard of autistic people in our society. It is still a nascent movement of which most people are unaware. We have not accomplished full inclusion and accommodation. We still have not raised enough awareness.
As I think to 2022, when Adam will be twenty years old, I hope for the ability for Adam to continue his education and the welcoming of his assistants not because he is unable, but because he can be enabled with them. I want for his participation in his own life planning, pre-college/university prep, and vocational training that will be unique to the needs of him and others like him. I think of his life, like mine, as a continual learning curve — certainly not ending at the age of twenty one. I watch and read the other parents and autistic individuals ten years ahead of us, and wish to thank them for the paths they are forging.
I look ahead to the next couple of decades. There was a time I fretted about it until I realized that time is relative and all people develop as they should. I worried about Adam’s future and where he would live. Yet, I intend to hang in there with him, come what may. I had some very difficult moments after my divorce and raising Adam here alone and this is when my worries were at an all-time high. On one very low day, a calm and quiet thought suddenly entered my head, and it was filled with love. While autism may have brought me some of my greatest challenges, it has also bestowed my greatest gift.
I love Adam more than words. He has always been my pride and joy. I know that it is my duty to assist him, and to find others to assist him along the way who will help him become the man he is meant to be.
Maybe I just can’t believe he’s going to be ten years old this year. I turned on an old video when he was first diagnosed. He is twenty months and has the same smile, the same boundless energy. He is the same boy in a growing, lanky body. He is a butterfly.