Autism: The Sound of Silence

For the first time, we’re planning a summer vacation together as a family!”

Normand Charest and Isabelle Binggeli  File:  Mental Health

Hélène Picard, 33, mother of two, shouts this out with enthusiasm. She and her husband Maxime have become experts in family logistics. Every move their brood makes is carefully planned in advance and executed with military-like rigor down to the last detail. Are they by nature compulsive parents? Not exactly. They are the parents of Zachary and Cédric. Their two sons were diagnosed as autistic at ages 4 years and 19 months respectively.

The youngest, Cédric, has suffered frail physical health all his brief life. And from the age of 7 months on, he hasn’t always responded when his name is called. “We thought he was just a bit wild, that he was being difficult,” his mother recalls. “We didn’t understand his reactions. The tiniest movement, or a small light or sound, provoked a tantrum.”

He was quickly diagnosed as suffering from autism. His parents started to pay more attention to his gestures — ignoring older brother Zachary in the process.

Zachary, a year older than Cédric, is very bright. By the age of 2 he could count and identify colors in both English and French. “Zachary has enormous potential,” his mother beams. “He is constantly surprising us. But holding a conversation with him is difficult. We often feel he’s far away in another universe, in his own bubble.” At nursery school, teachers noted that Zachary interacted very little with them or with other students. He appeared anxious and unfocused.

Every Child Unique

No two autistic children are exactly the same. Take Zachary and Cédric: Zachary is highly intelligent with an enormous capacity to learn, but he has poor social skills. His mother Hélène saw early on that he was different.

“After Cédric was diagnosed, we took several courses on developmental disorders,” she says. “We became members of the autism society in our region of Quebec, Lanaudière. We read up on the subject. When we began to have doubts about Zachary’s behavior, I knew where we were headed.”

The diagnosis of a second autistic son hit Hélène hard. Happily, her husband was there to comfort and reassure her. Still, she found the situation difficult to accept: “As a parent it tugs at your heartstrings when you see a boy riding a bicycle, or two boys talking about their weekend fishing trip, and realize your son can’t be that way. Still, nothing’s impossible. It’s only their reaction time that’s longer.”

Hélène and Maxime organize everything around their sons ‘disabilities. In the home, the alphabet is posted on walls, for Cédric. Strict routines are enforced, down to times for washing and brushing teeth. Child-proof locks adorn closets and cabinets. Mom stays home. She leaves nothing to chance: “Ignoring the smallest detail can provoke a crisis,” she says. “For years, a tube of toothpaste sat on the bathroom counter and no one noticed it. Until the day Cédric decided to try and eat the whole thing in one shot!”

If the kids happen to get up at 4 a.m. they start their rigid daily routine no matter what the clock may read. “They don’t see the world like we do,” Hélène smiles.

Over time she has learned to anticipate some of the far-fetched ideas that may enter the heads of her two sons. She deals with each tantrum accordingly.

School Days

When Cédric was 6 and Zachary was 7 Hélène and Maxime decided to enroll each in turn in a normal school. For 8 hours a week they are accompanied by a social worker. She works with them to help develop their powers of concentration. She repeats their teachers’ instructions, and calms them down in case of a panic attack.

Both kids have schoolmates they’ve known for years who accept and understand their differences. They sometimes take Cédric and Zachary under their wing. This isn’t always the case for autistic children in normal schools, observes education specialist Corrine Lepage: “Kids aren’t well informed about developmental differences. They can say and do some very cruel things.”

Lepage notes that limitations on budgets, time and energy mean that the school system can’t devote the hours and resources required to help problem students. “Teachers often don’t know until the very last minute that a developmentally challenged child has been introduced into their class,” she points out. “They already have their hands full. They need supplemental resources.”

Lepage thinks an integrated approach would serve autistic children best. Teachers should receive intensive training on how to handle autistic students. On the home front, parents could profit from incorporating techniques transplanted from adaptive classes. “There’s so much that can be done with these kids, and not just in the classroom!” Lepage argues.

Possible Causes

What causes autism? The debate rages. Quebec author Evelyne Claussens says environmental factors are to blame. In a foreword to one of Claussens’ books, Dr. William Shaw writes: “The growing levels of toxins and pollutants in our environment explain the exponential rise in autism.” Insecticides and preservatives are often blamed.

Others believe that there may be a link between vaccines and autism. Carmen Lahaie of Montreal believes that this is possible. She is the mother of an autistic child and the president of ATDEM, the organization devoted to examining autism and other invasive developmental difficulties. ATDEM was formed by parents of autistic children in the 1980s as a response to a lack of services offered to Montreal families.

Lahaie is intrigued by the work of British gastroenterologist Dr. Andrew Wakefield, who discovered evidence of the measles virus in the intestinal ulcers of autistic children. He argued that there exists a link between autism and the increasing use of vaccines for rubella, mumps and measles.

In 1998 Dr. Wakefield published his findings in the esteemed medical journal The Lancet. He was sued by vaccine companies; his career was ruined. Since then, no serious researcher has taken up that line of research.

Lahaie thinks this is a shame: “If we cure a person’s physical problems, we often treat their mental issues at the same time.” She and other parents have noticed a correlation between diet and autism: “Give an autistic child a slice of birthday cake and it can provoke a crisis…and the end of the birthday party!”

Help Refused

Programs available to sufferers of autism almost always target children age 5 and under. “We ignore autistic adults,” Lahaie says. “That’s a horrible situation for aging parents who need the help of their autistic children.”

Many autistic adults end up refusing help. Many of those who suffer from Aspergers’ Syndrome, a high-functioning variety of autism on the official psychiatric DSM inventory of Autism Spectrum Disorders (ASD), are never offered any help at all. “A lot of them have degrees, but they don’t function well in society,” observes Lahaye. “We should teach them to be independent so they can pay their bills. Sometimes they turn down help because they’re so smart. But we should listen to them without judging. Go step by step. Even if we know that we can’t change someone who doesn’t want to change.”

Hélène is proud of her two sons. She understands that there is a lot of work still to be done to raise awareness of autism. She knows that Zachary and Cédric will never have it easy in life. Yet she remains upbeat. “Everyone has different gifts to bring to building society,” she says. “We all have to live together!”

What Is Autism?

The term “autism” encompasses a broad range of disorders. It is not just one psychological issue. Autism is difficult to classify and pinpoint, even for experts in the field. But it is widely agreed that by age 3, autistic children display a few common symptoms:

They have difficulty socializing;

They have difficulty communicating verbally;

They perform repetitive acts and gestures.

Many sufferers are mentally gifted, particularly in mathematics and related fields. But about 6 out of 10 are developmentally challenged, falling on the other side of the intellectual spectrum.

Society’s recognition of autism as a mental disorder has evolved over time. In the 1800s, doctors labeled autistic children “idiots.” The word comes from the Greek word for a person’s private life, as opposed to their public life. An “idiot” originally meant someone who was painfully shy, a loner who withdraws from the world. The word “idiot” quickly became an insult.

In the 1900s it was the Swiss psychiatrist Eugen Bleuler (1857-1939) who used the term “autism” to designate what therapists had up until then called “idiotism.”

“Autism” comes from the Greek word autos, meaning “by oneself.” Autism cuts people off from the world around them.

In 1943, an article by Leo Kanner, a therapist, distinguished autism symptoms from schizophrenia. Kanner argued that autistic children are just as intelligent as other children, but simply cannot express their thoughts. The article listed “aloneness” and “sameness”(resistance to change) as characteristics of autism.

For a time, autism was believed to be caused by parents who were emotionally cold and distant. This blame game spurred the formation of parents associations in the 1980s. These parents groups argued against this misconception. The World Health Organization now recognizes autism as a developmental disorder.

Autism affects almost 10 people in 10,000.  Indeed, diagnosed cases of autism are up 300% in the last 10 years. Males are 4 times likely to suffer autism than are females. Autism affects every race, creed and income level equally. About 3 of 10 autistic persons are epileptic. Many autistic kids are hyperactive.


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