Autistic Youth Thrives in Large, Loving Family : 17-Year-Old Is Not Shut Away in His Own Little World
My hope is he can cross the line from being autistic to just eccentric.
--Stephanie Swofford, 22,
Brendan Swofford reads anything he can get his hands on; devours ‘60s trivia; is addicted to television quiz shows; and tells people he wants to be a computer programmer when he graduates from Dubnoff School in North Hollywood next year.
At 17, Brendan defies all stereotypes of autism. He is bright, communicative, affectionate. He is not, as is sometimes associated with autism, mentally retarded. Nor is his incredible photographic memory, his teachers say, the mark of an idiot savant.
Brendan Swofford is a success story. His is the story of a family that wouldn’t let go.
“We were kind of a chaotic family anyway,” said Barbee Swofford, 45, her voice projecting over the hum of a ceiling fan, a TV quiz show in one room, pop music on the radio in another, the ringing of the phone and occasional shouted conversation between the kids upstairs. “We’re the kind of family where people are always sleeping over in the living room.” She laughed: warm, extravagantly outgoing, at ease. “It’s much easier for people like us to adapt.”
A Regular on ‘Fame’
These are good times in the lives of Barbee and Ken Swofford. Ken Swofford, 52, an actor, is a regular on television’s “Fame,” playing the curmudgeonly principal, Quentin Morloch, and has enough other offers coming in that he can mutter about the idiosyncrasies of studios and production companies. Barbee Swofford has enough time now to take classes in counseling at UCLA.
Their five children are healthy, happy, doing well: Meemee, 24, a UC Davis graduate, is working as a secretary in San Francisco; Stephen, 22, is studying theater at Cal State Northridge; his twin, Stephanie, attends Pierce College and is into both theater and psychology; Brendan, 17, has passed all the high school exams preparatory for getting a diploma; Sabrina, 13, will be entering Taft High School in the fall. The family, except for Meemee and Stephanie who have their own apartments, lives in Woodland Hills in a two-story ranch house crowded with books, mismatched sofas, photographs and other odd souvenirs of their lives. For the last few years, a couple has come in every Monday morning to clean.
In the beginning, though. . . .
Ken and Barbee Swofford look at each other and laugh. She was 19 and he was 26 when they met at summer stock at Southern Illinois University in Carbondale, Ill., got married and immediately began having children.
When Brendan came along, they’d been five years without a little baby, and this one was adorable. He was also, his mother says, extremely hyperkinetic. “He’d bang into walls. He never walked, he just ran. He’d spin in a circle until he’d collapse.”
“It was like living with Cheeta,” Ken Swofford said.
They took him to doctors, began sleeping in shifts for fear Brendan would hurt himself, and tried to figure out what to do.
They knew little about autism, but didn’t think “it fit” Brendan. “We knew he could talk. He said cookie very well.” Barbee Swofford laughed, then continued, “but he didn’t communicate in sentences. He only spoke those words that were appropriate to him. And all I’d read about autistic children, well, Brendan didn’t sit in corners.”
(Even now, researchers have no sense of autism’s cause or cure, only that this baffling behavioral disorder is probably organic in nature and that there is a wide range of degree in symptoms.)
No two doctors had the same answer. “One neurologist said
there was nothing wrong, that Brendan just had an appetite for activity and I should forget the other kids and just entertain him all day,” Barbee Swofford said.
Other doctors suggested drugs. “We met kids whose parents had put them on Ritalin (a controversial stimulant that, for some reason, has the opposite effect on hyperactive children) and they looked like zombies, so we made a decision not to,” Ken Swofford said.
Then there was therapy. They tried that for a year about the time Brendan turned 4 and “it was a mess.” The therapist, Barbee Swofford declared, getting riled just thinking about it, was negative, contributed nothing.
“We were kids, we’d never had anything to do with therapists before,” Ken Swofford started to explain.
“Listen, if there’s any message I have for people,” his wife interrupted, “it’s if it’s (therapy) not working, get someone else.”
It was that therapist, however, who recommended the Dubnoff School in North Hollywood, an educational facility founded in 1948 for neurologically handicapped children. “Brendan started there when he was 5 and his first teacher made immediate contact with him. It would be three steps forward, then two back. But it was a big step for us,” Mrs. Swofford said. “It finally gave us a breathing point. We kept him at Dubnoff, and I think the consistency was a lifesaver.”
Those are the facts, plain and straight, but there’s more. Here was a family of five children, one autistic, the father trying to make a career as an actor. Those must have been difficult days.
Ken and Barbee Swofford think about this. They’re both outgoing, friendly people, people who hug and yell and get angry and forget about it. Difficult times, well, yes, except every family has them. They think of those early days with Brendan, and they remember his baby brother, who died of crib death when Brendan was 20 months. Brendan was in the same room as the infant. His parents sometimes wonder if that could have affected Brendan. And around the time Brendan was entering Dubnoff, they discovered that Stephen had a learning disability and had made it to the sixth grade without learning to read. That was taken care of, but with special classes.
So Cute and Lovable
As for Brendan, “he was just so cute and lovable.” Barbee Swofford grinned. “People were always loving, hugging him. And you see, all of our kids have very distinct personalities. I think instinctively we just accepted Brendan. Actually, the kids were terrific. They’d force him to communicate. They’d take his face in their hands, look him dead in the eye and say, ‘Brendan, you’re drifting away. Brendan, don’t leave me.’
“So all along the way, Brendan was made to relate. He was always made to be included.”
Ken Swofford shook his head, “these doctors, they say, ‘well it’s hopeless. If he doesn’t talk by 5, he won’t.’ That’s (untrue). He might speak at 10. You see these (autistic) kids stuck away, their parents bearing them like a cross. Like the word autistic was a death sentence. I think it made us closer.”
Brendan Swofford is delighted about being interviewed. And since the story is mostly about him and he’s taken the day off from school, he should go first, and it should be in the den--and yes, he’ll turn the television off.
Ken Swofford says he’ll sit in for a while, but when it’s clear Brendan has the situation very much in control, his dad wanders off.
Autism, Brendan Swofford says, speaking slowly and deliberately, every word enunciated, is when you bite your fingers and jump up and down and, yes, it’s very scary.
What does he do when these autistic things start happening to him? “I work at it by changing my speech, by speaking in whole sentences. I say Dad instead of Daddy. I try to act more grown-up.”
If he could do anything in the world, what would it be? “I would like to take a vacation and travel around the United States.” He thinks, then adds, “I would also like to have my own Newsweek (subscription).” He collects Newsweeks, he says. His earliest issue, which he bought at a used bookstore, is dated Dec. 2, 1957.
Then Brendan has some questions of his own: “Are your high school yearbooks at the home of your mother or at your home?”
“What high school did you go to?”
“When did you graduate?”
“When will I see you again?”
“Will you bring your yearbooks?”
In the kitchen, overhearing the last of this conversation, Brendan’s mother and sister Stephanie are laughing. “That was pure manipulation,” Stephanie says later. “Brendan has this fascination with the ‘50s and ‘60s and he likes looking through people’s yearbooks. He just set you up.”
Meemee, Stephen, Stephanie and Sabrina had never thought about it before: Do they ever get jealous of Brendan and the attention he gets? And don’t they ever get annoyed at his sometimes bizarre behavior?
As far as Sabrina is concerned, “the only time I ever get mad at him is over what television shows to watch. He likes game shows,” she said with a grimace. “Or sometimes he’ll come in with the radio blasting.”
Stephen, who everyone says is the only family member who is organized and the only non-yeller (“my style is quiet sarcasm”), says Brendan’s autism is “just something we all accepted. It wasn’t that big a deal. We didn’t treat him any different. . . . Of course,” he said pensively, “I couldn’t be the traditional big brother. You know, go out and play ball with him, that sort of thing. But you see other families and no one has it easy. Maybe if there were only two or three kids in the family, we might have felt differently, jealous or something, but with five. . . .”
Meemee can remember when Brendan was little, how she--7 when Brendan was born--was like a little mother, but with no expectations of the proper time for a new baby to walk and talk. “He’d be in his little crib and I’d bring him to my bed. I just thought he was neat to play with. I’d get him to write little stories. I was the type to spoil him,” she said by phone from San Francisco, “and if at times he was a problem, I knew I’d caused it.
Taught Himself to Read
“I think we all thought that there was sort of a barrier in his mind and once it was broken, everything would be OK. But he communicated whatever he needed and at 2, we knew he could read. He taught himself. He could do so many things. But unless you happened to find out about them, Brendan wouldn’t show off. The rest of us were such show-offs. You know how little kids are. But Brendan, he didn’t care. I remember, he knew all the Presidents’ names and their wives. We’d have him recite to our friends. It was so impressive.
“I didn’t really know how different he was. And the gap in our ages probably made him seem much younger. I just thought he’d grow out of it. It did seem Brendan was too big for the way he acted. You know, you might see a screaming 6-month-old in a restaurant, but not a screaming 3-year-old. We got used to it and he got better. We’d do shifts taking him out of the restaurant when he acted up.
“But you know how you read where the whole family revolves around one person? Not us.”
Sitting at the dining room table, watching Brendan help himself to some fruit in the refrigerator, Stephanie Swofford recalled the time four years ago when she was working at a center for handicapped children and she was among the chaperones on a trip to Disneyland. She took Brendan along to help. Among the children was another autistic boy.
“We didn’t have to wait in line or anything. You’d just go to the front and say, ’40 kids, 20 in wheelchairs and two autistics.’ Brendan asked me who the second autistic child was. ‘You,’ I said. He seemed surprised. I said, ‘If you are not autistic, why do you act autistic?’
“It was as if he saw a mirror image of himself and he didn’t like it. Like something deep down really hit him. I think that’s when he started really trying to correct his behavior.
He’s Come a Long Way
“Autistics seem to be shut away in their own little world. But Brendan is not shut away here. And he has really come a long way. It used to be I’d see him talking to himself. I’d say, ‘Who’s your friend?’
“But no, I couldn’t resent Brendan. How can you resent someone like him? He’s done the best he can with what he has to work with. And my parents, they were always great--with Brendan, with all of us. We all knew we were loved equally, but for different traits.
“With my mother, it was funny,” she added, smiling at the memories. “She did PTA, Scouts, the whole bit
with all of us. Everyone would always want to ride in my mom’s car. You see, after Brendan, she could handle anything.”
She’s known Brendan Swofford for seven years and he’s not a fluke, said Marguerita Barry, a master teacher specializing in the severely handicapped at Dubnoff School. “But he is at the upper end of the scale.
“Yes, he’s atypical. But it’s hard to say anything is typical with autism. Brendan did have language. His main problem was that he was detached from any normal interaction. He was in a fantasy world much of the time, always humming to himself, singing to himself. He was very sensitive to commotion, noise. Anything like that could distress him.”
She paused. Some of these things were difficult to explain, like the frustration autistic children feel, the way they get panicky, how they really do have “intentional communication"--"but sometimes you have to decipher it.”
A Phenomenal Memory
The thing to understand about autistic children is that they run the gamut, Barry said. As for Brendan, “he’s extremely bright and very verbal. But autistics perseverate, that is, they keep on a certain track to the exclusion of certain things. Like hand-flapping or memorizing voluminous lists of facts or doing the same math problem over and over again. I got Brendan a book with all these lists in it, sort of a book of demographics. He’s got this phenomenal memory. After reading the book, he could just rattle off things like the population of Budapest in 1908. But, you see, if he couldn’t get the next volume of the book, he’d go crazy trying to find out what’s in it.”
The photographic memory--his father has that too. And like his dad, Brendan thrives on stage. “He really puts himself into parts and he sings. He sings in dialect,” Barry said. “He’s very good and very funny.”
Brendan’s future: Could he grow out of his autism? “I don’t think you grow out of it,” Barry said. “I think what is possible is a compensation. If the autistic is aware of his behavior, they find ways of dealing with it. There are autistics who’ve gone on to college. There is a psychologist in town who is autistic. But still there are these residual behaviors and they have to work with it.”
Stephanie Swofford, thinking of her psychology background in school and her job of four years at the Calabasas Academy (a residential treatment facility for children who are homeless, on probation or emotionally disturbed), wasn’t about to say that all autistic children should be raised at home. For her brother, yes, it was best. But other children, well, it depends on the degree of their autism and of course on their parents.
Her mother was thinking less about the alternatives than the fact that “there are many families who’d like to work with their own children, but they get no help in that direction.
“I think, for us, it was instinctive,” she said. “But we’re lucky, having a large family, lots of friends. You have to be very determined that you’re going to work with a child yourself. And the advice that we initially got was only negative. The idea for that is that you have to prepare for the worst.
“But I believe that in preparing for the worst, you only perpetuate it. When you put expectations on them (autistics), they can respond. Yes, it’s hard to constantly try to pull for more from your child. And it’s especially difficult with Brendan because he’s so nice.”
She sighed, but it was of anger more than sorrow. “So many people are told that it’s a tragedy. As soon as they get the label, autistic, it’s a tragedy. The child is a tragedy.
“Look at him,” she said, flashing a smile at Brendan as he bantered with his father, “Brendan is anything but a tragedy. What’s really sad is when people have been programmed that way.”