A Thompson family of six is reaching out to other families and sharing their story of raising a child with autism - and more specifically, how one treatment option is helping their son.
The Autism Canada Foundation (ACF) says autism spectrum disorder (ASD) is a "complex biomedical condition that can affect the normal function of the gastrointestinal, immune, hepatic, endocrine and nervous systems." The foundation says autism impacts normal brain development and leaves most individuals with communication problems, difficulty with typical social interactions and a tendency to repeat specific patterns of behaviour. They also point out that individuals on the autistic spectrum have varying degrees of the disorder and treatment needs to be individually specified.
Caroline Winship, a mother of four, says ever since her five-year-old son Avery was a newborn she and her husband noticed something that was different about him. She says her son was a great sleeper, always wanted to be left alone and never seemed to have the need to be cuddled or held.
"He was very quiet but we just considered ourselves blessed to have such an easygoing baby," Winship says. "But as he got older we noticed a couple delays in development, but nothing outside the normal range on any chart." Some of these delays included Avery not walking until he was 15 months, only saying a few words at age two, and how he kept to himself while around other children. Winship says she and her husband still thought he was just a shy child and never suspected he might have autism.
But things changed when Avery's younger brother was born just before his second birthday. Winship says a very noticeable change in Avery's behaviour was detectable. The family at first attributed it to their child adjusting to having a new baby in the family. Winship says Avery stopped using any words at all and would scream a lot of the time or whine for things instead of using words. At this time he also started to use hand motions to explain what he meant and become very affectionate and even clingy towards his parents.
Winship says it was around this time when the Thompson Public Library put on a presentation about autism. She says she attended the presentation with some of her friends for the sake of learning more, not suspecting she had anything to worry about with Avery or any of her other children.
"Both of the ladies I went with kept turning to me and saying things like, 'Oh my gosh, that's just like Avery!'" Winship remembers. "But I would not see it and I brushed it off. I came home and told Jason [my husband] and he, too, was in denial."
Time went on and by the time Avery was four he spoke only four to eight words, but could recite entire scripts from movies or verses from his favourite songs. He remained very distant around children and adults that he wasn't familiar with.
Winship says a huge change in Avery happened when he and his older brother Colin started going to the Light of the North daycare in Thompson. She notes that Colin adjusted well to the new environment while Avery had a hard time handling different routines.
"He would always go to the same two toy cars each morning and hold them in his hand for the duration of the day. He would break down at each transition from one activity to another and continued to be distant from everybody," Winship explains. "Many people - friends, babysitters, day care workers - shared their concerns, as they wondered if his hearing was okay."
Finally, Inger Haukas, the director of the day care, came forward to Avery's parents and shared her concerns about Avery and autism. Winship says after this the family took Avery to see a general practitioner in Thompson who said he had many concerns about Avery's development. However, because he was not a specialist, he referred the family to a pediatrician. Winship says the pediatrician did preliminary tests that all pointed to Avery having autism and then forwarded the Winships on to specialists at the Health Sciences Centre in Winnipeg. The first person they saw there was a developmental specialist.
The specialist put Avery through different tests. In one, she sat in a small room with Avery and his mother. Winship was told not to interact with Avery but instead, wait for him to initiate play and then point him back to the specialist.
"I became very emotional at the realization that there was a specialist evaluating my son and he was failing almost any test," she says. "Jason was then brought into the room where he was asked to make Avery smile without any physical touch. This proved very difficult."
After the tests were completed the family met with a neurologist and head of the development clinic at the Health Sciences Centre. The specialist observed how Avery sorted shapes and took on a few other activities. The specialist then went through the results with the family, showing them charts and pointing out how Avery was behind his peers in almost every developmental area.
"She was very thorough and took the time to explain to us that there was no doubt in her mind that Avery was autistic. We just needed to find where he fit on the spectrum of this disorder," Winship says.
Treatment options with the family were discussed that would require daily instruction on everything from sitting still to speech pathology and toilet training.
Winship says the specialist told her about a type of treatment called applied behavioural analysis (ABA). But because the specialist wasn't sure what treatment options under that category were available in Thompson she told the family that she was going to have somebody trained locally in the community so the Winships would have the choice of having Avery go to a daycare full time with a trained worker or having the worker come to their home and train Avery's parents so all three individuals could work with the child.
"These options excited us, considering that we had heard reports of Manitoba having the best autism care, funding and support in Canada," Winship says. "They did not disappoint."
The Winship family had to wait six months to begin the ABA process because they needed a recommendation from a doctor as well as thorough background checks on family history, living conditions and other things. Once approved, they were put on a waiting list for funding for a full time tutor. After 12 months, though, the tutor was hired and trained in Winnipeg at the St. Amant Centre.
The St. Amant Centre, which is funded by the province, says that the ABA program is considered "the most effective intervention for teaching children with autism." They describe ABA as "an applied science based on decades of research".
Avery, who was five at the time, qualified for the pre-school ABA programbecause he was approved before was five. Winship says the problem is with the government not recognizing that he is not developmentally ready for school. According to their standards, he will only get the day care portion until June of this year. ABA will work with him for three years but the family needs the government to approve him being considered preschool for that length of time if necessary.
Avery currently attends Riverside Daycare with his tutor from 9 a.m. to noon where he takes part in different activities and socializes with children. The tutor meets with Avery for an hour at 12:30 and his day of tutoring ends at 3:45 p.m. on Mondays through Fridays.
Avery has just recently gone through his first full week of having a tutor but Winship says she and her husband are very excited about the progress he has made.
"The program is catered to his needs and strengths with lots of fun activities and breaks as needed. Very little time is spent sitting down at a desk. At this point, he is learning how to have fun and build the relationship with his tutor," Winship explains. "More goals will be added slowly as we all discuss the progress he is making on a regular basis." One example of a future goal Winship would like Avery to have is to be toilet trained, as he is still in diapers full time.
The tutoring is set to continue year-round with a one week break every three months as determined by the family. During these breaks Avery's tutor will take on more training.
Once Avery has met school entrance requirements, Winship says he would then qualify for a full time education assistant and 10 weekly hours of ABA tutoring outside of school hours. But since the Winships are the first home school family in Canada to have the ABA system in their home - according to Manitobans for Effective Autism Treatment (MFEAT) - Winship says some allowances will need to be made to work around class time and have the 10 hours incorporated into Avery's day.
Winship says her family has received a lot of support from local resources thanks to Family Special Services - a division of the Manitoba Department of Family Services and Consumer Affairs - and the Society for Manitobans with Disabilities (SMD) as well as the Autism Society of Manitoban.
"I cannot share the details of these supports, because they are different for every family and are based on funding available and specific needs, but they are outstanding and the people are a huge asset to our lives," Winship says. "There is also a support group for families of autistic children but we have not found the time to take part in this group. We would hope that all families remain positive and are doing whatever they can to make the future as bright as possible for their children."
Winship says a part of being a home schooling family - with all four of her children being homeschooled - means that her family does not receive any tax breaks or subsidies for curriculum that they pay for out of pocket.
"This is an unfortunate reality considering a portion of our property taxes goes to fund the public schools, but that doesn't mean the money isn't being put to good use - it just doesn't affect our family personally unless our children take individual courses at the local schools," she explains.
Winship stresses that if anyone reading this article is worried about a child they know and the possibility of autism, they should not assume the child is okay but at the same time don't stress that it means they definitely have the disorder. She says her best advice would be to go see a family doctor to get the ball rolling and look at all the treatment options that are out there - ABA and other worthwhile ones as well.
