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.
To learn more, visit www.SeeThingsMyWay.org
"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.
ALSO ON HUFFPOST:
One of the storylines on NBC's "Parenthood" follows a family's journey to accept their eight-year-old son Max's diagnosis of autism. Braverman plays a supremely intelligent, insect-obsessed boy with Asperger's syndrome. When Burkholder first auditioned for the role, he knew nothing about Asperger's and wanted to learn more about the syndrome.
As a brilliant forensic anthropologist, Brennan is rigid, logical and judicious. She lacks the ability to socialize with others and faces difficulty detecting sarcasm and metaphors. She is not explicitly labelled as a character with Asperger's syndrome, but her social ineptitude has had many people attributing this diagnosis to the character.
Sheldon is a renowned physicist who lacks the ability to compromise, socialize or empathize with others. He confronts situations with deeply engrained neuroses and obsessive compulsive tendencies. To his friends, he is both a source of irritation and an object of adoration. He, too, does not have a labelled diagnosis in the show, but Parsons himself has claimed that "thinking [Sheldon's] autistic is an easy leap for people watching the show to make."
DeLaurier may be diagnosed with Asperger's syndrome, but this doesn't stop him from having a rich and happy life. At Degrassi High, DeLaurier has a plethora of close friends, made the school football team and was even part of a band. He is often shown to be obsessive about keeping things the same — he wears the same outfits to school and regularly sits at the same desk.
Mazouz plays an anti-social, non-verbal 11-year-old boy. Logical and pedantic, he is rarely seen without his notebook in which he furiously scribbles strings of numerical equations. Though he has been diagnosed with autism, his father (played by Kiefer Sutherland) believes it is a misdiagnosis.
House is an anti-social maverick doctor, obsessed — consumed even — with solving the world's wonkiest medical cases. Though misanthropic and narcissistic, he is quick-witted and notes intricate details that most others would miss. Although he is never formally diagnosed in the show, House's obsessive nature, compounded with social difficulties, had viewers putting him on the autism spectrum throughout the show's eight seasons.
This brainiac child excels at mathematic equations, but his Asperger's prevents him from reaching success in his social relationships. His friends receive him with a mixture of affection, amusement and irritation.
Spencer Reid is pure genius — he graduated high school at the age of 12, has an IQ of 187 and can read 20,000 words per minute. He often exhibits common autistic tendencies and hints of schizophrenia, and Gubler has even stated that "Reid is 24, 25 years old with three Ph.D.s and one can not usually achieve that without some form of autism."
Cardiac surgeon Virgina Dixon has Asperger's syndrome and is often characterized by specific and repetitive behaviours and interests. She dislikes physical contact and always uses technical language to explain surgical procedures. Praising only what has been proven, in one episode she claimed "I don't have beliefs, I have science."
It is hinted that Nadir has Asperger's syndrome due to his inability to pick up on social or emotional cues, particularly sarcasm. He is extremely intelligent and is fluent in three languages. His keen observational skills propel him to predict other people's behaviours — often painfully accurately.