As parents of a young adult who suffers from severe autism, my husband and I have wrestled with many questions over the years ranging from the practical and the medical to... the philosophical. Our son, Dan, is 21, but he's not an average 21-year-old. For one, he's never had a girlfriend. He stopped speaking as a small child and sometimes he has trouble sitting still or keeping his hands off delicate objects when his senses are overloaded by his surroundings. In some instances, he even struggles to demonstrate to other people that he understands what they are saying to him.
Sometimes, though, the questions my husband and I ask one another about Dan are just downright funny, and thank goodness for that. Those questions tickle us on days when humor is what we need most. Earlier this year, we had one of those funny Dan questions when I asked my husband, Jim, "Do you think Danny would like to be friends with a beautiful 55-year-old showgirl?"
After giving me a look, Jim, who is 54, responded, "Don't I get first dibs?"
"She keeps her clothes on," I said.
"Too bad," my husband replied, still grinning.
"She wants to be his Facebook friend," I emphasized.
That is how, earlier this year, a Facebook friendship began between my son Daniel Mulvaney and a terrific woman with an even better name, Chou Chou Scantlin.
Chou Chou is far more than a showgirl, but rather a powerhouse of a singer and a former Shakespearean actress. She and her husband are the creative forces behind a nationally known costumed revue that resembles the nightclub acts of yore, Doc Scantlin and his Imperial Palms Orchestra. For years, Chou Chou has also been struggling — mostly in private — with a high functioning form of the very same autism that Dan has been living with since he was 3 1/2 years old.
As part of a lifelong quest to understand what troubles her, Chou Chou one day searched for "facebook for autistics" and found a blog I had written about Dan. It mentioned that he had joined Facebook and that the combination of text and photographs, representing many people he already knew, seemed to make it easier for him to focus and communicate, even without speech.
Chou Chou, who can perform, in part, because she sees light instead of the beloved members of her audiences, wrote to me about her own similar reaction:
"In a social situation, or just being out in the world, there is much torturous confusion. E-mailing is faceless but not in a good or inviting way. It is like talking to someone who's in a dark cave. The phone is no good, because, well, the expressions seem all wrong on both ends. Then came Facebook. I can see [my friends'] faces, which I adore, but there is no getting overwhelmed or confused by their expressions, movements, voices or idiosyncrasies. It is so simple and light and charming, and since people take the time to connect it takes away any fear that you are bothering them. As I read the postings on the other walls, the mystery of socializing unfolds to me in a way I have never understood."
Dan, who clicks to make friends on his own but needs help with his motor functions to get his fingers to the letters he wants, has expressed similar thoughts in his own way, writing on his Facebook profile: "i lik e p eople but u really need understand autism i dont show a lot but i feel much and want many many friends."
When Dan joined Facebook last year, he and I both found he responded better to Facebook than to any other communication-typing program, even those put out by educational scholars. It works for Dan, much as it does for Chou Chou. No other program combines photos, the option for brevity but brevity with warmth that this one does. Dan now has 149 Facebook friends all over the world, many of whom were his counselors at a wonderful sleep-away camp for individuals with disabilities. His counselors often post pictures of Dan's happiest moments there, more of which he expects to have this summer. Those photographs really cheer him up through the winter doldrums.
He is also one of 19 members of a Facebook group for individuals with autism who type with more articulation than they speak. The group is just getting started, but already there have been short discussions about the rigors of typing instead of talking, music preferences and, thanks to Dan, a very tentative question about making friends with the opposite sex. Dan is still waiting for someone else in the group to respond to that question. As many of us know, waiting for a response is part of Facebook — and friendship, too.
Barbara is toasting Chou Chou and Dan's 148 other Facebook friends.