It was November 2017. My 11-year-old son had just been diagnosed with autism spectrum disorder.
In some ways, this was the best thing that ever happened to him and our family. Finally knowing the cause of his struggles and behavior gave us the missing key to get him the help he so desperately needed. With a verified medical diagnosis, he was able to receive special education services as well as modified accommodations at school. And we, his family, were better equipped with the knowledge and understanding to assist him with navigating the world as an autistic person.
But in other ways, this was a terrifying, anxiety-inducing realization. All kinds of new questions arose about what the present and future would hold for him. Granted the future is never certain, but we began to worry about things we never would have thought twice about before.
Before he was diagnosed, we had always hoped and assumed that he would one day become the person who would attain his wildest dreams. The diagnosis called all of those hopes, dreams, and assumptions into question.
Would he ever be able to live independently, able to take care of himself on his own? Or would he always need someone else to live with him for the rest of his life?
Would he be able to go to college? He excels scholastically, but would he be able to succeed with all the social and environmental changes that college involves?
Would he ever be able to hold a job, have a career, and achieve all the things he wants to accomplish?
Would he ever make a friend, or meet someone to share his life with, or have a family of his own?
At age 11, he was still small enough for me to be able to physically restrain him, if necessary. Would I still be able to do that when he was fully grown? (When I talk about physically restraining him, I’m referring to the use of deep touch pressure therapy, which I have discussed before in my post A Day in the Life.)
He’s almost 15 now and some of these questions remain unanswered, but I do know one thing is certain: I am more hopeful for him now than I was four years ago. Since the time of his diagnosis, he has grown immeasurably, and not just physically. Today he is the size of a grown man, standing almost six feet tall and still growing. Yet I can’t remember the last time I felt it was necessary to intervene with deep touch pressure therapy.
And, more importantly, the emotional and psychological maturation process he has undergone during these past few years is almost hard to believe. Before I was getting daily phone calls from the school about issues he was having. As I sit here writing this now, I am struggling to remember the last time he had an issue at school that warranted contact with home. In fact, he exceeded all of his special education goals and was formally exited out of special education at the end of the last school year. He still has a 504 plan in place, just in case there might come a time during high school that he needs special accommodations, but he no longer requires specialized instruction. During our final meeting with his junior high special education teacher, she was so emotionally overcome by his metamorphosis – in addition to how much she would miss having him as a student – that she broke down in tears. Happy tears, mind you!
If you’ve read my previous posts, you are most likely already aware of the necessity of routine for an autistic person in order to maintain a sense of structure in an unpredictable world. My teenage son has been doing his own laundry for several years now because he wants his clothes washed a certain way. Here we are in summertime, when everyone in our family is on a different schedule, so he cooks his own meals on a daily basis. He is responsible for taking out the garbage and recycling, taking care of his cat, mowing the lawn, and snow removal. Most of the time he doesn’t even have to be reminded to do these things; he will do them on his own initiative. Asking a young child to do chores is stressful enough – I always dreaded the “but I don’t want to!” and the whining – but was even worse when he was younger because the very thought of having to do something other than what he was already doing would set him off. Now he will calmly take care of things without any hesitation … usually.
It will still be a few years before we start contemplating what life after high school will entail for him, and I wish I could say that it won’t be much different than what any other typical teenager faces. Realistically, though, I know there will be additional challenges that we will encounter. I was, however, encouraged to discover that many colleges and universities now offer specialized support services for autistic students. I don’t know that these services were available when I was in college 25 years ago, but I am thrilled to know that they exist now.
Four years ago, a seemingly insurmountable obstacle stood before us. Diagnosis was the first step. Knowledge of autism showed us the map we needed to begin our journey. Resources gave us the necessary tools to assist us along the way. The road has been rocky and fraught with peril, but we cannot and will not give up.
We will keep climbing this mountain, one step at a time. For him. One day we will reach the summit.