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Autism Doesn't Just Happen to Other People

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After four years of motherhood, Emmanuelle Assor's life was turned upside down when her young son was diagnosed with an Autism Spectrum Disorder (ASD). It was at that moment that she decided to get involved and write about the subject. Why? Because hope drives parents, and hope for a better world begins with raising public awareness and understanding of developmental problems in children, problems that change lives.

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"Your son lives in a parallel universe." That was the first blow. A harsh sentence uttered by the teacher in charge of the little family daycare centre my son had been attending for a few months.

Before that, there had been a few signs we had overlooked: He started walking late (17 months), he didn't talk much (only a few words), he didn't point... but denial was there, as well as worry. And now, during the infamous conversation with the teacher, it was announced that our son had a "problem." That was in February 2012. A lot has happened since then...

March 2012. We are sent to the CLSC for language workshops, but our son is not speaking any more than he was. We have evaluation meetings with first one, then two, then three different speech therapists. Nobody is saying anything, and we have no idea what the problem is or how serious it is. We are constantly worried. And then the second blow: Our child is kicked out of the daycare. The reason written on the letter we receive in the mail a month later by registered mail: "Integration problem." In April we find ourselves right in the middle of a move, with no daycare, and no resources.

The Fighter's Path

What follows is a long tortuous road, as each step towards a clear diagnosis is painful. After a month at home with our little one, we sign him up at a newly opened private daycare. The daycare director tells us not to worry. "Your child just has a behavioural problem." But tantrums in the morning when I drop him off at the daycare centre are followed by more bad news when I pick him up. "He didn't eat anything." "He refused to sleep." "He plays by himself and doesn't want to stay in the same room as his friends." We are more and more devastated and worried.

Our child hardly ever sleeps, and often vomits when he is sick or upset. He hardly speaks. Our pediatrician, however, tells us there seems to be nothing abnormal about our son. Since turning 2 years old he hardly looks at us; he plays with rocks in the park, and doesn't seem to understand us when we speak in long sentences. Despite all of this, we need to ask our pediatrician again to get an evaluation by the Sainte-Justine Development Centre. At the CLSC no one says anything outright, but an education specialist is sent to the house. Her speciality? Autism. We are heading into troubled waters.

July 2012, finally time for a vacation! In Mont-Tremblant, as we don't dare stray too far from Montreal, our child is having tantrums like we have never seen. At the beach, at the pool, at the park. He cries, throws himself on the ground, and seems inconsolable. In places that were designed to make children happy. We are officially exhausted.

Back in Montreal in the month of August, the Sainte-Justine Development Centre calls and asks a million questions. "Does your child point with his finger when he wants something? Does he line up his toys? Does he spin the wheels on his cars while looking underneath them? Does he watch TV with his head upside down? Does he say mama?" and my favourite, as it is heavy with implication, "Did you use drugs during your pregnancy?" We will hear these questions over and over again as well as the list of all the words our son says, a 100 times over.

Mourning the "Perfect" Child

In September 2012, the clouds clear up a little. Two different daycares contact us to offer our child a spot. We choose the daycare that seems the most open to our son's "communication problem." We are even offered a "shadow" to take care of him at his daycare. Nonetheless, we still don't have a diagnosis (another word that becomes less dramatic over time).

At the daycare, our child slowly finds his rhythm and his place. The daycare accommodates us as much as possible, and we are told not to worry too much: "We have had handicapped children here before!" A second shock. Our child is considered "handicapped"? We are then handed the government form for "Assistance for Handicapped Children" and are forced to acknowledge that our path is nothing close to normal, and that we are slowly drifting further away from everything we had planned for.

October brings the long awaited call from the Development Clinic and they give us an appointment for our son's evaluation in November. But how can you accept that you are part of the 2% of the population whose children suffer from autism? Why us? No, not us. It can't be!

D-day arrives and brings its share of fears and sadness. After a multidisciplinary evaluation, we are sent home. We will only be called back in a week to get the verdict. We already know what they are going to tell us, and are just hoping that a clear diagnosis will open some doors.

November 7th, the pediatrician specializing in development informs us that our son has an Autism Spectrum Disorder. There is no ambiguity. It is not a language disability, or an attention disorder, it is an Autism Spectrum Disorder (ASD, a new term, before we were saying PDD for Pervasive Developmental Disorder). Predictions for the future? "We don't know anything for sure. Your child will write his own story."

We are given a little pamphlet folded in half with our future summarized in a few lines: Contact such and such rehabilitation centre, the waiting list is at least two years...and then wait for the Sainte-Justine Hospital to call you for your eight free speech and occupational therapy sessions. The sky darkens once more...We will have to call our family and friends and try to explain what is happening to us.

Emmanuelle Assor's story will continue in a second article to be published later this week.


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