Back in the late 1990s, autism wasn’t exactly on Janice Bennink’s radar. Her son’s preschool teachers had mentioned he was playing alongside classmates - rather than with them - and often missed social cues, but it was only when he was seven that she received the formal diagnosis of high-functioning autism (at that time a separate diagnosis called Asperger’s syndrome).
“He would be doing the typical hand flapping & - little, repetitive movements when he got excited. And he’s very literate. By the time he started kindergarten, he was able to read,” says Bennink.
“The social deficits are the biggest challenge - and they always will be,” she adds.
Bennink’s son is now 24. He’s job-training and volunteering while looking forward to part-time university studies. His mother says that the road hasn’t been easy, and that her son still struggles with social interaction. But she attributes a lot of his successes to her constant communication with teachers, caregivers and other parents about his needs - a dialogue that helped her son get the support he needed to thrive.
“All parents of kids with autism have to be advocates,” says Bennink.
Autism awareness increasing
Because of the higher numbers of kids being diagnosed with autism spectrum disorder (ASD), it’s a condition that most people now know something about. Although the Canadian Public Health Agency is a few years away from establishing an autism monitoring system, about one in 94 Canadian children has been identified with ASD, according to Health Canada.
Scientists are currently investigating what causes the condition that becomes apparent in early childhood. They have identified a number of genes that may play a role in its development and speculate that environmental factors that may also trigger its onset.
Autism symptoms vary dramatically among patients. At one end of the spectrum, a child can have mild social deficits and difficulties with executive functioning skills, but have good language skills and appear to function well. At the other end, he or she can be non-verbal and have behavioural issues.
Wherever along the spectrum they are, however, there are some signs and symptoms that Autism Speaks Canada says most children on the spectrum exhibit that parents should watch for:
- No big smiles or other joyful expressions by the age of six months onwards
- No back-and-forth sharing of sounds, smiles or other facial expressions by nine months
- No babbling by 12 months
- No pointing, showing, reaching or waving by 12 months
- No words by 16 months
- No meaningful, two-word phrases (not including imitating or repeating) by 24 months
- Loss of speech, babbling or social skills at any age
- Repetitive behaviours such as lining up objects, hand flapping, twirling
- A fascination with a specific numbers, symbols, dates or science topics
- Unusual or extreme reactions to everyday events, such as frequent violent tantrums or outbursts
- Unusual sensitivity to noise
Autism experts recommend parents consult a pediatrician or family doctor if they have any concerns.
“If parents believe their child is showing signs of autism, I recommend following your instincts and insist on a diagnostic assessment,” says Laurie Mawlam, executive director, Autism Canada Foundation. “While you are waiting for an assessment, I recommend videotaping your child, making sure to capture all your concerns on camera. Start interventions while you are waiting for your diagnostic assessment.”
According to Mawlam, there should also be an evaluation of other health issues that often accompany autism. These include seizures, neural inflammation and immune system dysfunction, allergies, food sensitivities, gastrointestinal disease, energy problems due to mitochondrial dysfunction, and nutritional deficiencies. Some patients have found their symptoms improved when on a gluten- and casein-free diet while others, like Bennink’s son, benefited from eliminating and reintroducing foods to determine which were triggering symptoms.
Mawlam says a behavioral intervention should then follow. “Often a person with autism will use the services of a behaviour therapist, speech pathologist, occupational therapist – but this is far from exhaustive,” she says. “Other therapies may include music therapy, recreational therapy, sensory integration and play therapy.” These interventions help people with autism cope with stressful situations and manage triggers, improve speech if there are difficulties and interact more fluently with others.
Though kids can certainly see their symptoms improve, accepting them for who they are is key, says Bennink. “It is what it is,” she says. “We have to accept their differences.”
“Generally speaking, it’s getting a lot easier now,” she adds. “The more people understand [about autism], the better place the world will be for my son.”
If your child has been diagnosed with autism spectrum disorder
Janice Bennink passes along these tips for parents:
- Take time for yourself. Being a parent of a child with ASD can be challenging.
- Reach out. Get in touch with parents who have a child or children on the spectrum, or a local support group.
- Be selective. Find what works for you and your child among the vast amount of books and material available. Make sure that whatever treatment or program you try is backed by evidence-based research.