My wife Michele and I are parents to 10-year-old identical twins, and they both have autism. Being a dad is a lot of work under any circumstances, and with autistic twins, the demands of parenting can sometimes feel over the top. But instead of coping, or moping, with a tragedy, we're discovering and participating in a miracle. And we're finding that the lessons being learned in the treatment of autism have something to teach all of us.
Rates of autism have increased an incredible 20-fold in the last generation, and autism now impacts one in 110 children (and one in 68 boys) in the United States. While there are numerous theories as to the reason for this painfully dramatic increase, it has now reached a point where most of us have some friend or family member who is affected.
The conventional belief is that autism is a life sentence, and that autistic kids are never going to be able to function in the "real world" without massive assistance. And indeed, our twins do have some major struggles. At age 10, neither of our boys is potty-trained or able to attend school. Very recently, a sweet and well-intentioned pediatric neurologist told us, "There's really nothing that can be done." But my beloved wife Michele recently discovered and brought into our lives a program from the Autism Treatment Center of America, called Son-Rise, that turns this conventional life sentence ideology on its head.
Many parents of autistic children experience their parenting journey as a bitter one, filled with disappointments and loss. Studies have found the divorce rate among such parents to be as high as 80 percent. But we are learning that it is possible for parents and caregivers of autistic children to experience authentic joy and real fulfillment in their relationships with their kids -- and that this joy can spill over into all areas of our lives. In recent years I've spent more time working and Michele has been the more primary parent. But now, as we're finding new pathways for breakthroughs in connection and joy, the parenting journey is actually bringing us closer together.
The Son-Rise program reminds us that everything autistic children do, they do for a reason. When they retreat into familiar or exclusive behaviors, it is often to recalibrate and feel a sense of safety in themselves. Instead of fearing or resisting these behaviors, we are learning to trust, delight in and join our children, lovingly mirroring what we see, until they notice and make contact, often with great joy that they are being seen and accepted. They show us the doorway into their world, and then as we befriend them in it, we can show them the doorway out, into our world.
For example, right now, our son River is passionate about Barbie dolls. He loves to play with them, to change their clothes over and over again, and sometimes, to chew on their feet. One day recently, River was chewing on a Barbie's foot, staring off into space. He had been doing this for about five minutes, seemingly oblivious to the world around him. I was tempted to try to take the Barbie out of River's mouth, or to distract him from his munching by pulling him into a story or activity. But instead, I picked up another Barbie, sat across the room from River in a position very similar to his, and began to chew on her foot just as he was doing.
I went from seeing River's behavior as pathological, to seeing it as adorable and wanting to join him. River came out of his chewing trance enough to look over at me and grin. His smile seemed to be saying, "Congratulations! After years of my trying to tell you, you finally figured out how much fun this is!" As River continued his chewing, his eyes went back and forth between staring off into space, and looking at me with a big smile. Then after a minute or so, he gestured to me that I could come, if I wanted, to chew on the other foot of the very Barbie he was holding. He did so with an inviting smile, so now I came over and found myself three inches from River's face, staring into his beaming eyes, as we each chewed on opposite feet of the same Barbie.
When River and his identical twin brother Bodhi were babies, I never got to have the experience of making real eye contact with them. In fact, up until recently, I had never really had that privilege with either of them. That's how it often is with autistic children. But now, with a Barbie to enjoy chewing on together, River and I were beaming into one another's eyes with joy. It was a moment I think I will treasure forever. And it is an experience that is coming to be repeated with increasing frequency. Since we started to implement the Son-Rise program a few months ago, we have seen a tenfold increase in eye contact from both our children. Considering that lack of eye contact is one of the core features of autism, this represents an auspicious change.
This has led me to a rather provocative question with implications that go far beyond autism. When people do things that I find odd, I often judge or distance from them. But what if I were to consider that there might be reasons behind their behavior? How would my relationship to the world change if I spent less time judging what I don't understand, and more time building connection?
There is now, somewhat shockingly, a sense of hope and joy arising in me. For 10 years I have felt as if my parenting journey was about trying to make the best of a tragedy. Right now, I feel that I am actively participating in a miracle. For 10 years, I felt like much of what I was doing as a father was necessary, but at times also a distraction from my life's work as a transformational social change leader. Now, I feel like it is central to my life's work. I don't know what my kids will ever be or do, or how far the miracle will stretch. But it is already changing my life and how I see the world.
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