A few words...
I wrote this article, (published in Autism Spectrum Quarterly), well over a year ago as a result of a conversation that I had with my son about his autism. The conversation startled me as it was the first time I learned he was identifying with his autism. And even while I personally see autism as something that was caused by a genetic predisposition and environment factors, I still have to validate how he feels regardless of the cause. It is his life. While Tyler generally enjoys life and keeps positive, there are also many a day when he says, "My brain hurts.". Or he asks me, "Why can I do complicated things like Algebra, but I can't listen or focus?" On these days, I can only offer comfort and try to explain how the autism affects the way he thinks and feels.
I can honestly say that twelve years after the initial diagnosis, I am starting to forget what life was like without autism. From day one, we have tackled autism from every angle, made progress, taken steps backward and then made more progress. The journey is not for the faint of heart. We continue to pursue different approaches and therapies to help our son...never giving up hope that he will get better. After all these years, there is no doubt I am closer to acceptance...yet I still holding out hope that maybe someday, he will make enough progress to at least be independent.
The bottom line is that I want him to be happy and independent. Yet that is the uncertainty that parents who have children with autism face. What will happen to my child when I die? Sure I can plan financially. But who will love him and take care of him the way I do when I am gone?
In the end, acceptance does not mean complacency. For me, it means accepting my son for who he is with or without autism. Yet it does not mean that he and I stop working to reach goals and make progress. Acceptance means being tolerant of neurodiversity but it should not be mutually exclusive of finding autism treatments and causes. There are many shades of gray in this topic, and I am happy to say my opinion lies in the gray. Accepting but still never giving up hope that my child will get better.
ACCEPTANCE VERSUS CURE:
LESSONS FROM MY TEENAGE SON
A Simple, Complicated Discussion
A few months ago, while discussing a social rule with my 13-year-old son Tyler, he asked me, "Are you trying to erase my autism? Are you going to delete it?" I was shocked that amidst his near-constant thoughts of video games, he would stop for one minute and talk about something else. In this case, it was to point out to me that he was aware of his autism and, more to the point, that he did not want his autism erased or cured.
I told him that I wasn't trying to erase his autism but that sometimes we all need to learn and follow the same social rules. Social rules aren't just there so that we can have friends, but also so that we can get along in life; keep a job; stay out of trouble; and more. I told him that while his autism contributes to who he is as a person and to his strengths, the autism also sometimes makes it difficult for him to understand social skills; participate in typical activities; and create or maintain friendships.
He seemed okay with my answer, yet I was still beleaguered by his question. Who would my son be without his autism? Who would I be without his autism? If it weren't for his autism, maybe I wouldn't appreciate neurodiversity; maybe I wouldn't be the person I am today. Regardless, there have been plenty of times during this autism journey when I have prayed to God for exactly what my son doesn't want-to have his autism erased! Tyler's candid words forced me to reexamine my own thoughts regarding acceptance of autism versus trying to cure it.
Over the past two years, I have asked Tyler many times how he feels about having autism. And while he clearly understands how the autism negatively affects his social skills and attention, he always tells me that he likes his autism. Although he has also told me, at times, that he wants to be "normal," he continues to insist that his autism helps him. So if he likes his autism, do I really have the right to counsel him otherwise?
A Journey of Acceptance
When Tyler was diagnosed (so very long ago), we tried every available biomedical treatment including diet, secretin, chelation, supplements, and more to cure his autism. At the same time, we pursued intensive behavioral interventions. To this day, we still utilize biological approaches to help our son get well. And he still needs many traditional therapies for language and social skills as well as medication to increase focus.
Although Tyler did not recover from autism, we are grateful for the significant improvement he has made over the years. Our once two-year-old, nonverbal son is now 13 years old; very verbal; fully included in school; excels academically; and participates in many activities.
While his progress is quite amazing, Tyler, like many other children with autism, did not "lose" the diagnosis. For good or for bad, autism is a part of our lives, and we are learning to accept it. But make no mistake about it the road to acceptance has been long and hard.
Parents who raise children with autism face intense challenges. It is easy to understand how we get pushed to the edge, desperately seeking a cure and looking for the latest, greatest treatment-anything to help our children so that they can get "better" (whatever that means to the child), whether "cured" or just being able to speak a few words.
Memories of Frustration and Joy
How a parent feels about cure versus acceptance depends upon many things including, the child's age, progress, and functioning level. Hence, depending upon age and circumstances, parents may vacillate among the following reactions: being in denial about the diagnosis; seeking a cure; hoping for recovery; struggling with acceptance; and everything in between. And while some parents clearly have strong feelings about seeking a cure, so, too, do some of their children who eventually grow into adults with autism. Indeed, a parent's position on the "acceptance scale" may influence his or her reaction to people with autism who are opposed to a cure. For example, at times it is nearly impossible for a parent to understand the perspective of an adult with autism who pleads for acceptance, not cure, especially when parents are trying very hard to help their children through the challenges of autism.
As a parent, I totally get the frustration with this position, because I have been there when my child didn't talk, and endured a week of hellish potty training that was only successful because I had engaged a behavior specialist to help me. I was there when my son screamed and tantrummed in public to the point where we couldn't take him out to eat with us until he was five years old. I was there when my son was rejected by our neighbors because of his autism. I also remember the pain of being called by the school to pick up my son because he was having yet another tantrum. I was there fighting to remove a seclusion room in my son's elementary school. And if I ever forget the challenges that autism brings-as if that were possible-I always have the IEP meetings to remind me of how many services my son still needs. And, while I remember how my heart broke into a million pieces too many times to count because autism was in our lives, I also remember the joy that Tyler brings when he tells me that he loves me.
I admit that there are times when I'm conflicted. For example, when my son (who is now high functioning after much hard work on his part and ours) starts to identify with his autism, how should I feel? With the autism, he is the person I love, not the neurotypical son I was expecting 13 years ago. If he had been born with another disability, would it have taken me so long to accept it?
If truth be told, regardless of the indescribable grief I have experienced because of the autism, I have also experienced incredible joy. I have been there for all of Tyler's accomplishments. I celebrated when he got straight A's. I was so proud of him when he played the drums in the band concert and participated in the school musical. I was amazed when he auditioned for the talent show and handled the disappointment of not making it with grace. I remember when he started taking golf lessons and I continue to encourage him in his "solo" sport. I also remember all of the times he showed that he cared about others. And even though he has a lack of neurotypical friends, Tyler has friends, his "autism friends" as he calls them.
Tyler's and My Take on Erasing Autism
It is clear to me that Tyler's self image regarding his autism is in the process of forming. He is identifying and creating his own opinions about his autism as an adolescent. In his own words, "I am a kid with autism. I will be a teen with autism, an adult and then an old person with autism." ?
Erase his autism? Delete it? If I am honest, life would be so much easier and less worrisome without it. Most days I worry about the little things, like did he get through his school day okay with no misunderstandings or behaviors. But everyday, somewhere in the back of my mind, I also worry about the BIG picture and what will happen to him if something happens to me. Will he always live with me? Will he be able to go to college and live independently? Will he be able to fall in love and build a life with someone? Will he be happy?
The Lessons Learned
My conversations with Tyler have taught me that as parents we need to understand that our children sometimes identify with their autism very early in life, and then grow up to be adults with autism who embrace their diversity. I will forever remember Tyler asking me, "Are you trying to erase my autism?" Was he thinking that I was trying to erase him?
I am not sure that I can embrace my son's autism as much as he does; however, Tyler's perspective has made a profound impact on how I interact with, and talk to him about autism. While autism has brought our family many tears, our son who has autism has brought us much joy, and I am a few steps closer to understanding my son.
As for the cure versus acceptance debate, society often forces us to take sides on issues. People like the "neatness" of black and white, since gray is often messy and complicated. I've come to the conclusion that there is no "right" answer to the cure versus acceptance debate. Perhaps there is a "life cycle" to the issue where parents often seek recovery when their children are first diagnosed, and after many years of living with autism, they slowly come to acceptance. And for some parents, like me, we continue to help our children get physically well, therefore reducing the autism symptoms. It seems to me that both perspectives may be equally valid, depending upon the circumstances.
This much I know, Tyler has opened my eyes and my heart, and he continues to teach me what tolerance and acceptance of diversity really means. Autism or no autism, he is a great kid. And I love him the way he is.
*This article appeared in the Winter 2010 issue of Autism Spectrum Quarterly (www.autismmagazine.com or www.ASQuarterly.com)