Aloof, distant, self-absorbed, remote -- all these words describe children with autism. "He's in his own universe -- it breaks my heart," says the mother of a six-year-old autistic child. "Much of the time I can't reach him."

Living in a hidden world, an autistic child has weak verbal, social and intellectual skills. Many avoid eye contact, and cannot comprehend an angry tone of voice, or facial gestures such as frowns or smiles. And the number of children being diagnosed with autistic disorders is rising.

The Geneva Centre for Autism in Toronto estimates that 30,000 Canadian children -- one in 200 -- suffer from some form of the disorder, an increase of 600 per cent over the past decade. Part of the increase is explained by the loosening of diagnostic criteria and changing terminology; many children are being labelled with PDD, pervasive developmental disorder, a softer version of autism.

But the increase is real, and doctors have no firm explanation. "We don't know why we're seeing this explosion, but we do know that it's a dramatic one," says Dr. Ari Zaretsky, an assistant professor of psychiatry at the University of Toronto.

Autism is a group of brain disorders of varying severity, which cause a spectrum of difficult and erratic behaviours. But autistic individuals share one quality: They have difficulty making sense of the world, as they live in a milieu of their own creation -- hence the word autism (auto-ism), a withdrawal into self.

Organizations such as the Geneva Centre cater to a child's whole support network, as autism affects the victim's whole family.

Parents of newly diagnosed autistic children go through a period of adjustment, the first step of which is bereavement.

"Allow yourself to feel bad [initially]. . . . Scream. Grieve," says Dr. Marlene Brill, a psychologist and author of Keys to Parenting the Child With Autism.

"I was devastated when I found out my sons had autism," says the father of five-year-old twins. "They had empty expressions, and no amount of cuddling helped."

Many parents go through a stage of self-recrimination. Searching for a cause, parents begin a blame-game: Was there a problem during pregnancy? Was it the husband's smoking? The mother's social drinking? For example, for years there was a myth that cold and distant parenting -- "refrigerator mothers" -- caused the disorder. Autism is a neurological condition, not the parents' fault.

Confronting such a disabling condition in their child, parents also go into denial, often spending considerable sums of money on tests and unproven cures.

"Thirty-thousand dollars worth of testing later," says the father of 10-year-old autistic triplets Chris, Justin and Michael, "I accepted my sons for who they are -- and I love them even more now that I know they're special."

Through support groups, parents are also taught to deal with embarrassing situations, especially violent flare-ups. "When my daughter gets flustered in public," confides the mother of an 11-year-old, "she bangs her head, screams and bites her own fist, sometimes even drawing blood." Tantrum management is a skill parents of autistic children acquire early.

Some families will engage in heroic measures, even hiring friends for their child. One father admits: "My 10-year-old [autistic] daughter doesn't have any close pals, and that burns me. So I 'rented some kids' for her birthday, which was a mistake." On reflection, he sees he did it more for himself than his daughter.

Having an autistic child has innumerable implications. Families face a "long and painful process of coming to terms with their child's disability," says Dr. Lorna Wing of the British National Autistic Society. But with an involved caregiving network, families can progress from grieving to acceptance to education to advocacy.

Physicians must also educate themselves about the nuances of autism management. There is no single autism test. One useful diagnostic approach is to watch the child at play, and then make a behavioural assessment.

Though intense medical research is underway, no single cause of autism has been identified. The usual suspects are blamed: birth trauma, genes, viral brain infections, food allergies, environmental toxins, the MMR (measles, mumps, rubella) vaccine -- but there's no proof any of them are responsible for autism. One research goal is to create a prenatal diagnostic test, as is now available for Down syndrome.

Yet medical science is yielding some remarkable insights into a number of brain defects, which directly explain autistic behaviours. "Autism is the result of an abnormality in the structure and function of the brain," says Dr. Bryna Siegel, a psychologist at the University of California, San Francisco, and author of The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders.

High-resolution magnetic resonance imaging, for example, shows some autistic children have abnormal frontal lobes, the areas of the brain responsible for planning and control. Abnormalities have also been found in the limbic system, the centre of emotional control and tantrum regulation.

Measurements of brain electrical activity, known as EEGs (electroencephalograms), show that autistic children have excessive brain waves, too much background noise, leading to sensory overload.

Even crunchy foods such as chips and nuts can sound "like a raging forest fire," as one autistic adult comments. Remarkably, if an autistic child feels frightened, he may begin head-banging or biting himself, not to injure himself, but to block his fear, focusing his attention on a known stimulus.

The brain wave activity can be so excessive, in fact, that 30 per cent of autistic patients have epileptic seizures. Oversensitive autistic children will insist on maintaining a routine, which they find comforting. It's as if their brains, which are always firing, are too tired to make new connections. That's why autistic children, for example, are distressed if family members don't all sit in the same spots at mealtimes.

On occasion, this excessive brain activity can lead to genius-level skills in a narrow area. Hollywood aside, most gifted autistics, known as autistic savants, do not have the casino-worthy mathematical card-counting abilities of Dustin Hoffman's character in Rain Man.

But there are individuals who bridge the mysterious divide between autism and genius. Having "islands of ability," autistic savants have been able to memorize things such as perpetual calendars, phone books, messages in Morse code, baseball scoring histories or complex musical pieces.

One of the most famous high-functioning autistics is Dr. Temple Grandin, a professor of animal science at Colorado State University, who credits her success to being an autistic who "thinks in pictures." She writes, "I can accurately visualize the piece of equipment I designed because my . . . visual image of [a livestock facility] contains all its details, and it can be rotated and made to move like a movie."

High-functioning, successful autistics such as Dr. Grandin believe that starting special educational programs early, and forming lasting rapport with trusted teachers, is critical to an autistic child's future success. And finding such programs, caregivers and institutions becomes the vocation of many families with autistic children.

But the diversity of available therapies matches the spectrum of autism itself -- the array of behavioural modifications, approaches and philosophies is intimidating and vast. Deciding on an educational program for their child, parents must undergo rigorous self-appraisal, and answer several questions, such as:

How mentally limited is their child?

What is the highest level of function that might be expected?

Is the child disabled enough to warrant institutionalization?

Is the child a danger to himself or others?

Should the child be on medication?

Some of these emotionally charged questions are not easily addressed, and the answers may change with time, financial resources, housing and the family's ability to cope. With the assistance of caseworkers, parents must realistically assess their child's needs and then decide how best to teach social skills, interaction, language, possibly job placement, even mainstream integration.

The Son-Rise Program, for example, is an expensive American therapeutic regimen that combines home-based play-centred approaches: Therapists spend most of their time with the child in the child's home, and the instruction is individually tailored.

Other therapists make liberal use of picture-word cards, music therapy, drawing as a means of communication and escorted outings. For the severely language-impaired, caregivers even teach autistic children sign language.

Most therapists are also specially trained to engage children, intruding into their world as necessary, befriending them in the process. "If an autistic child is allowed to withdraw into his own world, his brain will not fully develop," says caseworker Roberta Sklar. And parents learn to savour small milestones. One couple said: "We were delighted that our [autistic] son has started to share toys with his younger brother."

But accessing such multidisciplinary care is expensive, and parents of autistic children become reluctant political activists.

Parents must contend with governments, which are hesitant to pay thousands of dollars in therapy costs annually. From the world of the autistic child, parents move to the domain of bureaucracy, which they say can be similarly confusing, slow-moving and frustrating.

Autism is on the rise, and will increasingly tax the patience of parents and society. But if the mark of a civilized society is how it cares for its less fortunate members, multidisciplinary solutions and adequate resources must be found.
Dr. Shafiq Qaadri is a Toronto family physician with a special interest in medical education.
Autism primer

SYMPTOMS

Does not point to objects

Avoids eye-to-eye contact

Lacks facial expression

Lacks make-believe play

Emotionally unavailable

Not seeking to share
enjoyment

Poor language development

Problems focusing attention

Overly repetitive mannerisms

Resistant to change

Significant multiple allergies

Oversensitivity to sound, light and touch

Tantrums and outbursts

Self-abusive behaviour

MANAGEMENT OPTIONS

Early diagnosis

Art therapy

Language therapy

Social-skills therapy

Music therapy

Controlling allergy and toxin exposure

Structured educational routines

Intensive Behavioural
Intervention (IBI)

Group-home living

Medications such as antidepressants and tranquilizers

Seminars and workshops for family members