Autism-( your health magazine)

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The Autism Puzzle-Your Health Magazine

As the first grandchild on either side of his family, Nicholas Steblyk was the object of loving attention and affection, which he returned unhesitatingly. Cheerful and responsive, he smiled often and made eye contact easily. By his first birthday, he could say "hi" and "mama" and answer, "What does the cow say?" with a hearty "moo."

When he was around two, his behaviour began to change. He seemed less excited to greet his mother, Anita Ferri, when she came home. He was less responsive to overtures from others who wanted to play. He continued learning new words, but used them mostly when he was looking at things or playing alone. If he wanted something, he'd point and make the sorts of monosyllabic sounds a baby does before he can speak.

He began getting frustrated easily. When he was upset, he seemed inconsolable. Anita and her mother, who spent a lot of time with Nicholas, knew something was wrong, but it took a day care worker's observation to force them to acknowledge the possibility of autism.

"The day care worker said, 'You know, he doesn't like to play with other kids. It's almost like he's in his own little world,'" Anita recalls. "Even now, when I say that, I get a chill. I went home and told my mother. Neither of us wanted to say it, but one of us had to say that darkest fear. One of us kind of whispered it, and we both, in that moment, knew in our hearts what it was."

Autism is a communication disorder that affects between three and six out of 1,000 people, and four times as many boys as girls. It's complex and confusing: while children with the diagnosis share three primary characteristics – difficulty with social communication, difficulty with or an absence of language communication, and repetitive ritualistic behaviours – their personalities and behaviours often vary widely.

Two people with autism can seem like opposites, with one chatty while the other neither speaks nor makes eye contact. Some have normal intelligence. Others are cognitively impaired. Some display almost no reaction to pain but are so sensitive that a light touch may feel like a slap. Some have additional conditions such as epilepsy, Attention Deficit Hyperactivity Disorder (ADHD) or an anxiety disorder. While these conditions may respond to medication, there is no medication for autism itself.

Doctors have yet to determine exactly what causes autism, though scientists are working to identify genes that may make a person susceptible to it. What is known is that certain genetic disorders that affect the brain in utero can be associated with autism. Among these are tuberous sclerosis and Fragile X chromosome abnormality. Other conditions that affect brain development in utero, such as maternal rubella, can also be associated with autism.

Diagnosing autism may take more than one session with a specialist. A child with a hearing loss may appear to be autistic, which is why a hearing test is always ordered as part of the screening. A child with an attachment disorder or one with a high fever who isn't feeling well on the day of his doctor's appointment may also appear autistic. Ditto for a child with a language disorder who is also ritualistic, or one who is severely cognitively impaired.

"You have to look at them over time," says Dr. Keith Goulden, one of four developmental pediatricians at Capital Health's Autism Follow-Up Clinic at the Glenrose Rehabilitation Hospital. The Clinic also has two psychiatrists and a nurse.

Dr. Goulden relies on input from a multidisciplinary team when making a diagnosis. The team can include a psychologist who does a formal assessment of intellectual functioning, an occupational therapist who can assess sensory hypersensitivities and the ability to perform daily living skills, a speech-language pathologist who can assess speech or language delays or impairments and an audiologist who tests hearing. Dr. Goulden also interviews the family and gets input from the classroom teacher if applicable and uses a variety of tests including structured and unstructured play.

Some children are easier to diagnose than others. Dr. Goulden says the group that requires the most scrutiny includes "kids who are a little bit geeky and a little bit odd, kids who are little professors and are bright and can hold a conversation with adults, but can't hold a conversation with their peers."

Such children don't always have autism, which he defines as an impairment so significant it impedes day-to-day function. "Some children might be socially awkward, but not socially impaired."

Sometimes it's difficult to tell. For example, nine-year-old Nicole Parker doesn't appear socially impaired to many people. After observing the Grade 5 student, a typical comment is, "She's not autistic."

Her mother, Lyn, a special education teacher at Mayfield Elementary School, where Nicole is in a mainstream class, understands the confusion. But, she says, "Just because you have a disability doesn't mean you don't have a lot of ability. It's just a different kind of ability."

Strong in math and science, Nicole has a lively imagination and wants to become a veterinarian. She watches movies backwards and forwards, repeatedly, to better understand the story. She is literal to the point that when her father once said he had to "light a fire" under her dawdling sister, Nicole threw herself in front of her sister's bedroom door and begged her father not to set her on fire.

As a toddler, Nicole didn't speak or look at people. A "sensory seeker," she loved rolling in mud. Today she has a swing and a trampoline in her room to provide her with the sensory stimulation she needs. She doesn't have a classroom aide but she uses a laptop with voice recognition software because she still can't read or write even close to her grade level.

Still, her progress is impressive considering the diagnosis her parents received when Nicole was four: severe autism and ADHD. The doctors at the clinic in Seattle, where the Parkers lived until two years ago, said Nicole would have to be institutionalized.

Unlike many parents, who are understandably traumatized by such a diagnosis, Lyn was neither surprised nor frightened. Research and observations had long since convinced her that Nicole was autistic, and she and her husband had been treating her accordingly.

In Seattle, Lyn began taking university courses in Applied Behavioural Analysis (ABA), one of two proven treatments for autism in order to help her daughter. Eventually she earned a degree in special education. She and her husband removed gluten (a wheat protein) and casein (a milk protein) from Nicole's diet and marveled at the improvements in her behaviour, the most noticeable of which was that she stopped drooling. They went to a number of other specialists, including a naturopathic family doctor. Gradually they reintroduced wheat and casein. Today "she's on a normal kid diet," Lyn says.

The Parkers aren't the only parents who have used a variety of treatments. But Dr. Goulden cautions against being overly optimistic, stressing that while some of these treatments may work, the only proven ones are ABA and Intensive Behavioural Intervention (IBI), and environmental controls.

Many children with autism also benefit from working with specialists such as occupational therapists, speech-language pathologists, and hysiotherapists, but those experts work on specific conditions, not on the social behaviours at the heart of autism.

There is no cure for autism, though studies have shown that one out of 200 people with autism will function within the normal range of all areas of ability. A more realistic goal for therapy, Dr. Goulden says, "is not to make these people not autistic, it's to make them functional despite their disability."

In Edmonton, the non-profit registered charity, Family Linkages Foundation of Alberta, offers a variety of programs and services, including IBI. Like ABA, IBI uses principles of behavioural psychology to give positive and negative reinforcement to shape a child's response. Roma Kurtz's sons, 16-year-old Ben and 14-year-old Grant, are learning personal care skills from their IBI consultant. They're also learning to moderate their behaviour.

Ben, who Roma describes as "a tremendous pacer" learned to sit still after working at length with his IBI consultant, who developed a game to help him. Because Ben doesn't speak, the consultant used a book of pictures. Ben would point to the picture of an item he wanted. The consultant would give it to him and let him play as long as he sat still. If he stood up and began moving, she would take away the item. The other proven treatment method is one most parents have always employed: using environmental controls, which essentially means developing strategies and adjusting outines as needed to help a child succeed.

Lyn learned early on that taking Nicole to a grocery store with bright fluorescent lights, miles of aisles and loud music would over-stimulate her and result in a miserable experience. It was easiest to leave Nicole at home but it wasn't always practical, so Lyn found a store with low lights and soothing music.

Like many children with autism, Nicole has a tendency to leave the house unattended. Because her parents realized how important it was for her to be alone outdoors, they bought a dog. If Nicole ran off, the dog would find her, make her stay in one spot and bark until someone came to find them. "Even today we tell her, if you feel you have to go for a walk, you have to have a sandwich, your coat and the dog," Lyn says.

Anita Ferri's son, who is now 21, was recently diagnosed with diabetes. He loves sugar but has little understanding of how dangerous it has become for him. Compounding the problem: "He has a nose like a bloodhound," Anita says. So she hides the sugar, which works until someone else wants it and can't find it. It's frustrating, but putting controls into place to make Nicholas's environment safe is necessary, and the family has learned to adjust.

Learning to adjust is a trait common to families with an autistic child. "Autism affects everything we do," says Charlene Prochnau, whose youngest son, Brayden, six, was diagnosed as severely autistic shortly after turning three. "I don't think there are two minutes in a day when I don't consider it."

But she's more optimistic than she was three years ago. What's made the difference is the support she's received from fellow parents of autistic children and the improvements Brayden's been able to make spending up to 40 hours a week working with an ABA consultant, a physiotherapist, an occupational therapist and a speech language pathologist.

Brayden can now talk, sit, and focus. At school he's learning to read. "He's probably worked more in the last three years than a lot of adults," she says. "He's constantly learning."

People have criticized Charlene for pushing her son, saying, 'you don't want to do that to him.' Her response: "I'm not doing it to him. I'm doing it for him. If he was like every other child and he learned through play and imitation and as he walked through life, he wouldn't be autistic, but he is and we have to provide him with a way to learn that other children seem to gather through osmosis."

When Charlene first learned about Brayden's disorder, she wasn't sure what, if anything, her son would be capable of accomplishing. Now she has a much clearer and more positive picture. Just like other children, she says, Brayden learns throughout the day. "He just learns differently."

- Debby Waldman