Autistics need the same things we all need, only more so: I mean love, and the special care that emanates from that love. Though they don’t perhaps realize it, they also need truth, so that love isn’t directed where it does no good. With this column I’d like to honor two people who this year have shown special love for autistic kids and for the truth that serves them.
You couldn’t find two American women more different than these two: Alison Singer and Mary Mathis. Singer, a former TV producer who lives in Scarsdale, N.Y., is 43, well to do, and moves comfortably between the worlds of science and policy. She has a 12-year-old daughter, Jodie, with autism. Mathis, 62, grew up chopping cotton and packing frozen okra in Montezuma, Ga., before moving to Niagara Falls, where she now shares a cramped half-duplex with three autistic grandchildren, ages 2 to 5.
Singer, you may recall, made the New York Times and gained the enmity of the Age of Autism crowd last January for leaving Autism Speaks, which she had represented on a committee that’s setting priorities for autism research. She decided she could no longer speak for a group that wanted more government money to be spent investigating a fruitless theory—namely, that vaccines cause autism.
It wasn’t that Singer pooh-poohed the idea from the beginning, she told me. “I think families were right to ask that the vaccine studies be done. And our public health community responded. We now have dozens of studies that have looked at vaccines and vaccine components, all of which have yielded the same answer, that no, vaccines do not cause autism.” More money, she felt, would be better spent looking into relevant causes and promising therapies.
Vaccines, of course, are much more than just one of the many theories about what might trigger autism. Immunization is a touchstone for a series of political and health beliefs that divide parents of autistics. Many parents who blame vaccines seem to flock to unproven therapies that claim to cure the damage vaccines caused. That profoundly bothers Singer. “It scares me to see children with autism being put at risk by therapies that have no evidence of efficacy and can do real harm, especially when they divert time and energy away from proven therapies like Applied Behavior Analysis.”
Proof of efficacy is hard to obtain; the placebo effect operates in almost all clinical trials involving autism therapies. For example, when the pig hormone secretin, miracle cure of the late 1990s, was given its day in scientific court, doctors who conducted clinical trials testing the substance found that all patients seemed to improve—the ones who got saltwater just the same as those injected with the actual hormone. “I think this is because we love our kids so much and want them to improve,” Singer says. “This is why it’s important to have rigorous, double blind, placebo-controlled testing of various interventions.”
That hasn’t been the case with chelation, IVIG, vitamin B12, hyperbaric oxygen chambers or any of the other, constantly proliferating therapeutic approaches that are championed by some parents and some alternative therapists.
In April, Singer joined with Karen and Eric London, previously of the National Alliance for Autism Research, to start the Autism Science Foundation, a research funding group. Taking this step meant Singer had to undergo the slings and arrows of unhappy parents. Starting a charity from scratch in the Madoff era is no cheap trick, but Singer says it’s been refreshing to have a clear message and a clear point of view. “I no longer have to worry about saying something that might upset a donor,” she told me. “Our donors know what we stand for, and they are extremely supportive.
“Autism Speaks likes to call itself a big tent, where all views are welcome. But not all opinions are created equal; some are backed by science and some are not. At the Autism Science Foundation we are a smaller tent, where science is welcome. Our tent is growing every day.”
I chose to write about Mary Mathis with Alison Singer because Mathis epitomizes the great love that parents feel for their children by the way she cares for her three small grandsons in the most difficult of circumstances.
Mathis’ daughter, who suffers from depression, had three boys by different fathers before she fled her home, unable to handle taking care of Damien, now 5, DaShawn, 4, and Javier, 2, Mathis says. Damien has been diagnosed with pervasive development disorder and the other two children are also on the spectrum.
Mary Mathis, who is separated from her husband, has had open-heart surgery and four back surgeries in recent years. She gets by with help from her own disability and workers’ compensation payments, and with Social Security payments for the boys. It comes to less than $2,800 a month—$500 of that goes to the rent—but she isn’t complaining. To the contrary, she’s very appreciative of the doctors, nuns, social workers and volunteers who support her devotion to the boys.
“Taking care of these boys is harder than picking Georgia cotton, and picking cotton was hard!” she tells me during a telephone chat. “But I love my grandchildren and they’re mine. They didn’t ask to be conceived, they didn’t ask for what they got. And I’m going to do whatever I can to make their lives a little easier, to make them dress nice, keep them clean, make sure they’re healthy, they get all their shots, they get their education. Autistic children don’t educate easy.”
It’s been a hard education for Mathis, too, but she has taken readily to the advice offered by sympathetic clinicians and social workers. “Before he turned 2, the oldest one started speaking gibberish. I’d never heard of autism and I didn’t know what was going on,” she recalls. “He stopped talking, he started screaming, kicking, he stopped eating. I thought he was having seizures and took him to the doctor. Right away the doctor knew what was going on.”
Mathis lives alone with the boys. The oldest ones panicked at the slightest variation in their routine. She couldn’t even take them shopping—they would fall on the ground and scream. She was eventually able to leave the boys for brief periods with her son, whom they came to trust.
Before long, the Niagara County early intervention program provided a speech therapist, Bernadette Boland, to help with Damien, and then with the other boys. “I told Miss Bernadette, ‘If you can get him back talking I’ll love you forever.’” The oldest boys are speaking now, Mathis says. And the experts have helped give her tools she uses to work with the children.
The first snows have fallen in Niagara Falls, and the children naturally want to play outside, but there’s no good place for them. Hence Mathis’ next project: to get a house where they can have a fenced yard to play in, as well as rooms of their own where they can bounce around.
“I’ve got screws in my back and I need new teeth, but nothing keeps me from taking care of these boys,” she says. “I’ve borrowed hundreds of dollars from my friends to get the kids all the tests they need. They are not going to into a foster home.”
Though her work extends to research affecting the care of all autistics, not just her own, Singer is linked to Mathis by the gratitude she feels for the professionals who have cared for her own child. “Jodie has learned some functional, communicative speech and can make her wants and needs known,” her mother says. “That’s really a breakthrough. As her speech has improved, so have some of her most difficult behaviors.
“We owe so much to the amazing teachers and therapists who work with her.”
