I love the autism community. I love the passion, enthusiasm and commitment parents, caregivers and therapists have for the children and adults on the spectrum.
However, I find that same community can be a much-divided one, too. Pick an issue and there seem to be two opposing sides. ABA therapy is good, ABA therapy is bad. A biomedical approach works, a biomedical approach is a waste of time. On any issue, it seems lines are drawn in the sand, and that same enthusiasm and passion can quickly turn into a debate.
Even the most basic issue, such as whether or not to do any therapy, can cause disagreements. Across message boards and at conferences, I have encountered many people who have told me, “Why do any therapy at all? You should just love your child the way they are.”
I’m very fortunate to have a wife who asked the same question I did when our 2-year-old son Cameron was diagnosed with autism: “What do we need to do for our son so he can live on his own terms?” Our family set out on a journey to leave no stone unturned.
During our four years on this journey, we have tried different therapies and different biomedical approaches. Some have been amazing and some haven’t worked at all. There have been a lot of tears and challenges along the way for both my wife and me and our son.
The message I have for people who say, “Stop trying to change your child and love them just the way they are,” is this: It’s not about changing our child, it’s about giving him an opportunity.
My worst fear as a parent of an autistic child is who will take care of my son when my wife and I aren’t able to or when we pass. We don’t want our son to spend what should be the best years of his life living in an institution on someone else’s terms. We want him to live a life where he can support himself, make his own choices and see what this amazing world has to offer.
Of course, none of this is guaranteed, and he may have to live with assistance anyway. Because of some of the therapies we’ve tried, he may grow up being upset at my wife and me. He may grow up and thank us, or the truth may be somewhere in between. Either way, my wife and I can look him in the eye and say, “We did this out of love, so someday you can live the life you want to live and give yourself every opportunity to make choices that make you happy.”
Our son is now 6 and his progress has been amazing. He’s becoming more verbal and social every day. My wife and I feel confident we’re on the right path for our family. Even though some people may disagree with that path, I hope people will come to respect it as much as we respect whatever path others with opposing views choose.
Maybe we have wasted time and money, but one thing for certain is that we aren’t on this journey for change but for opportunity. As the old saying goes, “You don’t love your children because they are bad or they are good. You love them because they’re yours.”
The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.