Life on the autism spectrum

Posted on April 2, 2014 in Child & Family Debates – Full Comment
April 2, 2014.   Tasha Kheiriddin

One in 68. That’s the latest estimate of the number of American children who have an autism spectrum disorder (ASD), released just in time for today’s marking of World Autism Awareness Day.

In 2008, the estimate was 1 in 88; in 2000, it was 1 in 150. Whether due to an increase in diagnosis accuracy or an increase in the number of actual new cases, these are terrifying statistics. If the number of children with ASD continues to grow at this rate, the implications for society — the school system, the workplace, the health system — are deeply troubling.

As its name suggests, ASD has a wide range of expression. A child “on the spectrum” can be anything from a nonverbal preschooler to a genius solving complex math problems at the age of six. Some possess unique combinations of gifts and disabilities. They frequently obsess about unusual interests, like vacuum cleaners, or in the case of my daughter Zara, rabbits. They may “stim,” performing repetitive motions like rocking or hand flapping. They may suffer crippling anxiety over everyday experiences, like going to sleep, waiting in line, or visiting new places. They have great difficulty regulating their emotions and socializing with peers.

Most challenging for families and caregivers, kids with ASD are prone to raging meltdowns, triggered when things do not go according to plan, or when their senses are overstimulated. Many autistic children suffer from Sensory Processing Disorder (SPD), rendering them exceedingly sensitive to sound, light, touch and taste. They are easily distracted and fidgety, bothered by labels in their clothes and the texture of their food. They cannot concentrate in a regular classroom setting. The bird outside the window, the student beside them scratching his head, the hard feel of the chair: all demand their attention in equal measure, making it impossible to focus on what the teacher is saying.

What accounts for this? Maddeningly, we still don’t know. The latest research points us to a scrambling of the brain in the womb: overgrowth of some cells, underdevelopment of others. But why this happens remains a mystery.

If one in 68 children is today “on the spectrum,” we must find out why. We also must make sure that these kids get treated like any other people with a disability. A child with diabetes, a spinal cord injury, or blindness will be diagnosed and supported by the health-care system. But a child with ASD is left mostly adrift. As a parent, your options are either to spend a small fortune on private treatment, or go on a wait list for public services.

There is only a brief window of time when autistic kids can be successfully treated. But government wait lists often are years long

That waiting time can mean your child misses the critical window in his or her development. Early intervention in speech, behaviour and socialization is the only statistically proven means of helping autistic children manage or overcome aspects of their disability. But not only are wait lists years long, children at the high end of the spectrum are generally ineligible for any public help at all — even though for many of them, the therapy can help them function at a “neurotypical” level in many aspects of their lives.

Left untreated, the prognosis for kids with ASD is grim. They are far more likely to be unemployed, alone and on the margins of society. A Norwegian study published in 2011 tracked children diagnosed with the condition in the 1970s and 1980s, when little treatment was available. By age 22, 96% were on a disability pension; 92% of high-functioning and 99% of low-functioning individuals were unmarried. Another European study published in 2009 found that even with high or normal intelligence, social communication disorders left adults with ASD severely impaired. Of 122 individuals studied, average age 29, only 50% lived independently, and 80% suffered from a secondary disorder, including depression, psychosis, anxiety and addiction.

This is why treating ASD is so important. Not just for our children, but for everyone they will touch throughout their lives. Being autistic should not make you a statistic. Persons with ASD deserve the chance to become contributing members of society. They deserve to use their amazing gifts to the fullest, and overcome their limitations as much as possible.

And it is possible. Diagnosed with Asperger’s Syndrome (an autism-spectrum disorder) at three and a half, now four “and three quarters,” as she’ll tell you, Zara has made tremendous progress after nine months of daily Intensive Behavioural Intervention. Today she joyfully participates in group activities; she is far more flexible when she doesn’t get “her way”; she understands when she gets “stuck” on an idea and needs to move on; she is learning to make real friends. She still has serious challenges with attention and completing tasks, and knows she has to work harder at these things than other kids. We have had the first of no doubt many conversations about ASD and what it means. But she is determined to leave her learning centre and go to “big girl school” — a.k.a. senior kindergarten — this fall.

With the right supports, I am confident she will succeed. Without them, I shudder to think what her future would be. And what the future of so many thousands of children like her, tragically, will be, if we don’t act, and get them the help they need — now.

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