|Matthew Chamberlain has come a long way for a boy with autism He’s done a year of Grade 1. He now socializes and makes eye contact.
By Bobbi-Jean MacKinnon
Editor’s Note: The Reader Magazine first did a story on Matthew Chamberlain three years ago. Today, we follow up on that story.Matthew Chamberlain takes off his jacket, stuffs his backpack in his cubbyhole, flashes his teaching assistant a broad grin and heads to class.It’s one of the last days of school at Lakefield Elementary School and his kindergarten/Grade 1 homeroom is buzzing with excitement.Matthew quietly sits down at his desk, ready to start his day, which will include reading, music, French, gym and private speech therapy.His parents, Donnie (Duckie) and Heather Chamberlain, of Quispamsis, just learned their handsome blonde-haired, blue-eyed son will have to repeat Grade 1 next year, but they couldn’t be any prouder.”I take it as a compliment,” says Mr. Chamberlain. “To me, they must feel he has the potential to complete the Grade 1 work or they’d just move him along.”Matthew, 7, has autism, a neurological disorder that interferes with the brain’s ability to comprehend and socialize.
An estimated 1,200 New Brunswickers have some level of autism. There is no known cause, although researchers have found there are neurological and genetic factors involved. There is also no known cure.Just a few years ago, Matthew would not make eye contact with anyone, could not sit still long enough to eat, and could not talk. He would run around on his toes with his hands flapping, engage in repetitive behaviour, such as rocking back and forth, and constantly shriek “Ieeeee.” (Cindy Wilson/Special to the Telegraph-Journal)Matthew Chamberlain smiles as does the actions to a song during French class.
Today, he has attended Kindergarten and Grade 1 in a regular classroom with the help of a one-on-one teaching assistant.He can sit calmly and focus on a task, ask for things he wants or needs in short sentences instead of just pointing, and interact with his peers both in the classroom and on the playground.He is doing so well, his teacher, Alice Edson, whom he greets with “Morning Edson” because he doesn’t know honorifics, has assigned him the task of taking the classroom attendance list to the office every day.Matthew, whose psychological assessment at the age of 6 indicated he had the developmental level of a four-year-old, can also print the alphabet in upper and lower case as well as the numbers one to 33. And he knows his shapes and colours.
His progress has been encouraging, say the Chamberlains, who have two other sons: Sam, Matthew’s fraternal twin who is not autistic, and Benjamin, 9.They attribute Matthew’s success, in large part, to the intense 40-hour-a-week therapy program they started him on at home about three-and-a-half years ago and continue today at 10 hours per week in addition to school. It is based on applied behavioural analysis, or ABA.ABA is a one-on-one teaching technique that breaks behavioural, social and academic tasks down into minute steps, which are taught by providing cues that are faded over time and by using reinforcements such as food, drink or fidget toys for repeated correct responses. Inappropriate responses are neither reinforced nor punished. (Cindy Wilson/Special to the Telegraph-Journal)Matthew Chamberlain concentrates as he works with his private speech pathologist Sharon Gainforth. The candy is a reward when he finishes the page.
It optimizes learning conditions for autistic children who learn differently from other children. Although most children generally learn through language, children with autism are deficient in language skills. Most children also learn by imitating others, but children with autism are not interested in social contact. So ABA focuses on the other primary way that children learn – through consequences, reinforcements for repeated correct responses. A 1987 study of 19 autistic children under the age of four who received 40 hours a week of ABA therapy found that nine of them (47 per cent) successfully completed Grade 1 without assistance and were indistinguishable from their peers on measures of IQ, adaptive skills and emotional functioning.
Matthew’s private speech pathologist, Sharon Gainforth, keeps a steady supply of his favourite treat, Skittles, on hand as reinforcement.”Matty, is that an orange?” she says, opening a book to a colour picture of grapes in a small resource room at the school. “No, it’s, not,” he replies haltingly.”Is that an orange?” she asks, opening the book to another page. “Yes,” he whispers. (Cindy Wilson/Special to the Telegraph-Journal)Matthew looks for a reassuring touch from teachers assistant Doris Mallaley during music class.
Mrs. Gainforth closes the book. “Matty, I’m looking for the beetle bug. Can you show me the beetle bug?” He quickly flips through the pages until he finds a picture of a beetle and taps his index finger on it to show her.”Good job,” she says enthusiastically, patting his hand.”I want a Skittle,” Matthew says, rubbing the fleshy part of his thumb against his lips, one of his repetitive behaviours.Mrs. Gainforth retrieves a small cannister of Skittles from her desk, shakes it and offers him a yellow one. Matthew pops it in his mouth and before he has even finished chewing it says, “Red.””Yellow Skittles are yummy,” says Mrs. Gainforth, who is trying to expand his communication skills beyond requests to comments. “Red,” he persists.”You really want a red one? Okay,” she says, handing over a red one to a clearly gleeful Matthew. “I’m a sucker,” she says with a smile.
Mrs. Gainforth has been working with Matthew for about four years. She meets with him every Monday morning at the school for about 30 minutes.His development over the years has been remarkable, she says. When Mrs. Gainforth first met Matthew, he wasn’t making eye contact or talking. He was essentially living in his own world.”He really focuses on you now and with that, communication has followed. That was the critical improvement we needed to see.”Mrs. Gainforth believes ABA has played a role, but contends having any kind of intervention during the preschool years and a team of specialists working together is what’s key.”We’ve some kids who have never done strict ABA and they’re flying.” (Cindy Wilson/Special to the Telegraph-Journal)Matthew smiles as he is handed a dandelion from his classmates during recess.
Lynn Rector, the resource methods teacher at Lakefield, who designs the special education plans for Matthew and five other autistic students, agrees.”ABA is one component,” she says. “The big thing is to have their anxiety down and a good match of teacher, teaching assistant and child.”Matthew’s teaching assistant, Doris Mallaley, has been working with him every school day for the past two years using the ABA methods she has learned through taking courses and attending conferences.Their connection is clear as she sits across a desk from him during morning reading time, pointing at each word in a picture book and waiting for him to read them aloud.”Good job, Matthew,” says Mrs. Mallaley, who only uses verbal praise as reinforcement for good behaviour, no treats. “Way to go.”Then something distracts Matthew and he whips his head around. “Matt, look at me,” she says, putting her finger under his chin to re-establish eye contact.Matthew locks eyes with her.
His furrowed brow quickly transforms to a beaming smile and he excitedly rocks back and forth in his chair, pumping his arms above his head. “Matt, hands down,” she says, holding his hands flat on his desk.Although Mrs. Mallaley still occasionally has to threaten that she will remove Matthew from the classroom if he doesn’t behave, it’s rare. He has come a long way since he started school, she says.For example, he used to make a lot of noises in class, which could be distracting to the other students. Now, he rarely makes any noise, other than when he’s speaking.”I’ll go, ‘Shh,’ and he’ll go, ‘Shh,’ so he knows.”And while Matthew used to ask for things by merely pointing to them, he’ll now say what he wants. Mrs. Mallaley often creates situations to encourage that, such as hiding his spoon at lunchtime so he’ll have to say, “I need spoon,” or only pouring him a bit to drink so he’ll have to ask for more. (Cindy Wilson/Special to the Telegraph-Journal)Matthew blows a dandelion that has gone to seed as he plays outside during recess.
Even the fact that Matthew doesn’t want to be removed from the classroom illustrates his progress because it means he’s aware of the other students and wants to be included, a big step considering many autistic children aren’t interested in social contact, she says.Mrs. Mallaley, who has been a teaching assistant for 10 years, says she wishes she had known about ABA earlier. She can think of at least one other autistic student she worked with about three years ago whom she believes she could have helped more with the tools ABA provides.”It’s a shame more people don’t know about it.”The Chamberlains also wish they had known about ABA sooner. “He could have maybe done better if we had known earlier, started earlier,” says Mr. Chamberlain.Matthew was diagnosed with autism when he was about 27 months old, but the Chamberlains didn’t learn about ABA until he was about three years old, after he was assessed by a team from Fredericton’s Stan Cassidy Centre.Then the Chamberlains had to find someone qualified to work with Matthew. They found a behaviour interventionist trained in ABA, one of only about a dozen in the province at the time.
She developed a program for Matthew, covering speech and occupational aspects as well as fine and gross motor movements, daily living activities and social interaction, and trained six UNBSJ psychology students the Chamberlains hired to assist her, but moved away a short time later.One of the students, Lindsay Young, took over as team leader and has continued to work with Matthew. She is considered one of only about two people in New Brunswick certified in ABA therapy and has since trained other students to help her.”We spent so much time trying to find people and train people,” laments Mr. Chamberlain.”But Matthew’s made big gains,” he stresses, reviewing his son’s latest report card, which shows he had “appropriate development” in every category of his special education plan, such as speaking and reading, and “very good” development under the social/emotional category, including politeness and co-operation. (Cindy Wilson/Special to the Telegraph-Journal)Sarah Burgess smiles as Matthew Chamberlain gives her a kiss as they stand in line for French class.
His progress has also made a big difference for the family unit, says Mr. Chamberlain. Matthew isn’t as demanding on his parents’ time and is better able to interact with his brothers, who both go to Quispamsis Elementary to ensure their independence. “We’re planning to go camping at Fundy this year. Two years ago, that wouldn’t have even been thought of.”It hasn’t come cheaply though for Mr. Chamberlain, a lineman and his wife, a nurse. Matthew’s ABA cost about $1,500 a month initially and now that he’s in school, about $500 a month. Family, friends and coworkers set up a trust to help. It has remained active.Many parents of autistic children have been lobbying the government for years to pay for ABA, which costs about $40,000 per child over the course of their treatment.One study estimates that funding ABA-based programs saves about $1 million per child compared to the long-term care costs without intervention.Last April, the provincial government announced $2.8 million in funding over two years to establish an early intervention program for autistic children.
The details of how the money will be spent have not been worked out yet, but the government plans to target children between the ages of three and five.British Columbia, Alberta, Ontario and Prince Edward Island already offer varying levels of funding for intensive therapy programs.Even if New Brunswick decides to spend the money on ABA, Mr. Chamberlain doubts it will benefit Matthew greatly since it will likely be another two or three years before enough people are trained and programs established. By then, Matthew will be about 10 and research shows the most critical time for intervention is between the ages of two and five, before challenging behaviours set in, he says.Still, he hopes the government opts for ABA intervention. “I think every family should have that opportunity to proven medical treatment. I think people should have the choice.”Mrs. Chamberlain agrees. “We really, truly believe in this intervention . . . Being able to find a way to teach Matthew things and to communicate has been a big help.”As a parent, you know your child is not going to be cured, but you want him to be as functional as possible through life and the way to do that is through therapy,” she says.”Our biggest hope for Matthew is he will have some kind of future either semi- or totally independent and a job of some sort . . . It would be a great relief for us if that worked out.”I’m not giving up on that happening for him yet. He’s doing so amazingly well so far.”I guess we’ll cross that bridge when we come to it.”