PBS News Hour
Heidi De Marko
Video by Kaiser Health News September 29, 2015
Alexander Brown swings back and forth on a makeshift hammock bolted to a wooden beam in his living room. The swaying seems to soothe the otherwise uneasy 14-year-old, facing the challenge of dealing with both puberty and autism.

Every Sunday, my husband and I drive 45 minutes from our house in Cambridge to our son Finn’s residential home in Framingham.

Finn is 12. For the last three years, he’s lived there with eight other boys. They are kids, like him, who attend the New England Center for Children. It’s a school that serves children with autism.

Finn lives there because his needs are beyond what we can provide. It would be physically dangerous for us, and for him, to keep him at home.

TWO months before she died of pancreatic cancer in November 2010, my normally strong, stoical mother broke down weeping in my arms over the fate of my autistic older brother.

Institutionalized for over 40 years, Joshua, then 55, was in a stable situation and seemed relatively happy. But my mother was undone by that fear that haunts all parents of disabled children: What will happen to them when I’m gone? Though I hastened to assure her that I would become his guardian and watch over him after her death, she was inconsolable.

I can’t overestimate the value of that smile of recognition offered to us each time we come to the Deluxe Town Diner. The experience of being truly seen, autism and all, and yet still accepted is profound. My husband and I often split up to go out, one of us staying home with our disabled son while the other accompanies our daughter, or we pay for a babysitter to watch Finn so we can enjoy the sorts of activities we took for granted before he was born — going to the museum, to the movies, or to friends’ parties — without the sudden need to pack up and leave because of a violent outburst.

Realist painter Deborah Martin turns to ethereal abstraction to express the emotional experience of autistic children and the people closest to them.

Martin’s intuitive understanding of autism stems from years of working with special-needs children during college and an enduring relationship with a close friend who struggles with this complex spectrum disorder.

The families committed to the project span the country. Through social media, Martin keeps track of each child and his or her support system. “When an image or a story speaks to me, I begin to envision how to represent that family’s experience.”

Forty percent of autistic children never learn to speak. Roughly half engage in aggressive behaviors, either against their caregivers or themselves. These aren't likely to be among the 10 percent with so-called savant gifts who go on to do great things in arts, science and engineering. Nor are they the fraction, substantially larger though uncounted, whose high-end functioning allows them to work and find their own way in the world. These are the other kids, the sizable percentage who don't make sudden strides or outgrow symptoms. They are the boom generation of the cognitively disabled: kids like mine, who are taught, at great expense, to fold a towel and eventually tie their shoes.

"Today is Autism awareness day. All I ask is that you please ask your children to include the child who is having trouble making friends or keeping a conversation going, or the one who is playing alone. Many with Autism know they weren't included or weren't invited, but just don't know why. Sometimes Autism is all encompassing and sometimes it is so subtle it goes unnoticed. Unfortunately, sometimes the child goes unnoticed too.”

Within the past year, my husband and I stopped showing up in the many drawings and cards our five-year-old daughter, Annabel, brought home from school. Instead nearly every creation was made for him: her “baby”; her “cutie boy”; her brother, Finn. A map to Candy Land for Annabel and Finny. A valentine for Finny. A magnet for Finny. Whenever she drew herself in a picture, he was always there, always small, sometimes crying. And whenever her name appeared, just below she wrote his, connecting the dot in the i of his name to the l in her name so that it resembled a lollipop. When we recently moved to a bigger home, Annabel was nervous about Finn’s having his own room for the first time. “What if he gets scared?” she asked. “Who will sing to him?” After all, she explained, “only I speak his language.”

But what is language to Finn? At age 3½, he should be speaking in sentences, enjoying silly Dr. Seuss books, and saying, “Mama!” Or at least answering to his name. Instead Finn communicates with pointed fingers and grunts, clicks and kissy sounds, having lost even the rudimentary babbling he was capable of two years ago, when he was diagnosed with autism.

I’ve embraced Finn’s beauty because it’s one of the few areas where he can truly thrive. He can’t catch a ball, or throw straight; he can’t draw a picture, or sing a song, say my name, or a write a word. I’m quite certain he’ll never be an academic or even a good conversationalist. If I walk him through the house, pulling him forward by the hand if I’m not carefully watching, he’ll knock his head against the door-jams like a pinball. A teacher once advised us to put him in a helmet. This undiagnosed visual processing disorder was just another complication in his already complicated diagnosis of autism and PDD-NOS (persistent development delay-no other symptom).

Without possessing the means or desire for the sort of communication that forms the basis of typical relationships, Finn may have to rely on his beauty to get the support he’ll need to thrive. I’m hoping his beauty will charm people, as it has charmed his caregivers and teachers. I want him to be protected from the bullies I imagine waiting in the shadows for this soft mute boy.