On the Rise
More families are living with the challenges of autism
By Gamiela Fereg
When five-year-old Sarah* began kindergarten, her mother, Janice Anton*, was amazed that within two days she had memorized all of her classmates’ first and last names, as well as whether or not they were in class. Sarah’s extraordinary ability to remember things and her tendency to mimic what she sees and hears are common to children with autism and Fragile X syndrome, the leading known genetic cause of autism.
Sarah, who has Fragile X, also exhibits strong sensitivities to sound and smell. “She lacks that filter that we all have,” says her mother. “For example, if we’re in a room and it’s loud and busy, we can ignore it but she can’t.” This makes it difficult for Sarah to concentrate on some activities, causing her to act out in negative ways when she becomes stressed by a situation. Children at the milder end of these spectrum disorders, like Sarah, are often misdiagnosed as having learning disabilities, isolated speech delays, ADHD or other issues.
While a genetic test can identify the mutation of the X chromosome that causes Fragile-X, scientists are still not sure what causes autism. Researchers are looking into origins such as genetics, biological brain function, environmental factors and other possibilities. Medical professionals must rely on a list of criteria to make a diagnosis. A dramatic increase in cases worldwide over the past three decades has raised awareness and urgency to find answers. In Canada, one in 165 people are now diagnosed with some form of autism and Ontario is home to roughly 70,000 individuals living with the neurological disorder.
Governments are starting to allocate more money to autism-related initiatives than in the past. But it still is not enough for one of the fastest growing developmental disabilities, which "can affect every area of an individual’s life and ability to function in a typical way," according to Lucy DiPalma, an FSA Toronto Options community resource facilitator for people with disabilities.
Expensive treatments can cost families tens of thousands of dollars a year. Sarah’s one-day-a-week speech therapy costs her family $90 per 45-minute session. However, “it’s not always about getting the money to pay people to take care of individuals with Autism Spectrum Disorder, it’s also about educating families on how to better manage,” says DiPalma.
Research has shown that divorce rates are far above the national average for parents of children with special needs. And parents aren’t the only ones affected. “It’s difficult on my son because he has to deal with living with a higher level of stress because my husband and I have been stressed,” says Anton. Sarah and her nine-year-old brother are like any typical brother and sister, “they adore each other and fight a lot,” but with extra attention going to one sibling, it’s normal for the other to feel lonely or overshadowed.
Says DiPalma, "Families tend to shelter people with developmental disabilities and not encourage or foster independence, and that's really not helpful to people who have disabilities." Also, for people who know nothing about the condition, it can be awkward talking about it to families affected by it. The awkwardness often comes from wanting to be sensitive about the subject but “it’s really hard to have a normal interaction with other parents,” says Anton.
Segregating children with intellectual disabilities in school can both perpetuate this awkwardness and limit opportunities for children with disabilities to learn behavioural norms from others. “Social inclusion from a very young age is the best way to help people with autism live typical lives in society,” says DiPalma. Currently, lack of funding to pay for needed supports means there aren’t many inclusive opportunities for children with developmental disabilities in schools.
The need for a special education assistant can also present challenges for the child. “It’s very difficult to make friends [in school],” says Anton of her daughter’s experience. “I think that her main barrier is the education assistant. It’s kind of alienating because everybody knows that Sarah has a special teacher.” Fortunately, Sarah has been able to make friends at her daycare and is doing great there because her condition is not known to others, except daycare staff who receive tips from her parents on how to handle Sarah when she behaves differently.
Fortunately, there are programs available for individuals and families who need help coping with the difficulties associated with autism. FSA Toronto’s Options program helps people with autism and other developmental disabilities live independently. Options staff provide assistance with many different life issues, including teaching healthy parenting skills and accessing funding to hire personal support people so that people with intellectual disabilities can live independently.
*Not their real names
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