It's often said that there is as much autism as there is autistic people. Danièle Aitken is the mother of three children, aged 9, 8 and 5. In the space of a few months, her three children have each been diagnosed with an autism spectrum disorder (ASD), and just as each child has his or her own personality, each child has his or her own ASD.

On this last day of Autism Awareness Month, Néomédia wanted to find out more about the day-to-day life of this atypical family.

“The first child to be diagnosed was Elyot. He was three years old. It was also the easiest to see that there was something wrong. We already had the two girls and we could see that he was behaving differently. For example, every morning, he was adamant about emptying the dishwasher. If by any chance the dishes weren't clean, he'd have a fit. So we'd take the dishwasher away in the evening so he could empty it in the morning. We soon realized that simply doing this lightened our routine. As a baby, he also tended to block his ears when there was too much noise. We thought he had ear infections, but after several audiology tests, we realized that he could hear very well,” explains the mother. 

“Elyot's language delay also gave us a clue. At 18 months, he was only saying Mommy and Daddy.At daycare, they told us he had a slight delay, and that's what prompted us to go and see a specialist. The diagnosis finally came down: level three autism,” adds Danièle Aitken.

According to the Canadian Paediatric Society, there are three levels of autism: level 1, requiring some help; level 2, requiring a great deal of help; and level 3, Elyot's level, requiring a great deal of help. 

Now aged 5, Elyot still hasn't reached the language level of a child his age, and still wears diapers.He is regularly monitored by a host of specialists, including a special educator and a speech therapist.

Now aged 5, Elyot still hasn't reached the language level of a child his age, and still wears diapers. He is regularly monitored by a host of specialists, including a special educator and a speech therapist.

“Elyot is echolalic, which means he repeats the last words.For example, right now he's playing an educational game on his tablet and it says 'Play now for free', well, he repeats that over and over. For speech therapists, this is a very good sign of behavior. Some children end up developing their language like this, while others remain in echolalia.In Elyot's case, only time will tell. He also has a speech sound disorder, verbal dyspraxia.His vocal cords aren't able to put the right sounds in the right places to get the words out.This is common in autistic children of his level.He also has echopraxia.This means that he automatically and involuntarily reproduces gestures performed in front of him.”  

A different disorder for girls

For 8-year-old Romy, the youngest daughter, she's practically at the center of the spectrum. 

“Autism is very different in girls than in boys, and it's harder to diagnose. Socially, as girls, we've been conditioned to act in a certain way, to be more careful, but when this type of behavior doesn't come from you, when you do what you're told to do without understanding why, when you don't feel it deep down, it's frustrating. This leads to a number of situations where Romy experiences anxiety, resulting in disproportionate outbursts. For her, anything to do with the senses, including noises, is very difficult. After a day at school surrounded by noisy chairs and talking desks, she explodes. The trouble is, she can't put a word to her emotion.”

“As her diagnosis is fairly recent, I don't quite understand it yet. The psychologists explained to us that she has a low level of wakefulness. When neurotypical people have a low level of wakefulness, for example when they feel tired while driving, they open the windows and turn up the music to stimulate them.For Romy, it's a bit like that.When she feels her arousal level dropping, she'll start pirouetting, singing and playing music.She's always got to have things going on in her head. We could have thought it was ADHD, but the doctors tell us it's not, because she doesn't have attention deficit disorder.”

The eldest of the siblings, Lucy, 9, was diagnosed at the age of 8. Unlike her brother and sister, she is considered at level 1. “Lucy always threw tantrums, even when she was eight. We thought it would pass as she got older. Fortunately, today, with the help of the special educator, it's not as bad, but it still happens.  Lucy had to go back to second grade, so we had an intervention plan. In the meantime, we had her diagnosed. Once you have the diagnosis, your children are taken care of and the school follows the plan. For example, Lucy receives her exam 20 minutes before the other students, she is entitled to extra sheets, she is entitled to her class notes", adds the mother.

For Lucy, the signs are more social and temporal. “For her, yesterday, today, tomorrow, in two weeks or last year, it's all the same time. She doesn't really have a notion of time. Socially, she's more inclined to take on the personality traits of her friends. For example, right now, she's in a phase where she loves soccer, because her friend loves soccer. It's as if she's looking for her personality, her interests. Since she has difficulty expressing her feelings and emotions, Lucy tends to hang out with leaders. She'll hang out with girls who are stronger than her, who can express themselves and who will defend her. We're lucky because so far, she's had very good friends, but there's nothing to say that won't change as she gets older. That's what scares me, that she'll be swayed to the wrong side. Lucy is more hypersensitive."

According to the mother, Lucy also has a tendency towards victimization. “My daughter might tend to use her diagnosis to avoid doing certain things or getting out of certain situations. Right now, we're in the process of telling her and understanding her diagnosis. It's not easy, because we don't want her to use it as an excuse. It's quite delicate."

Every diagnosis brings its own pain

For any parent, receiving a major diagnosis like ASD for their child brings its share of fears, doubts, pain and grief. 

“When we received Elyot's diagnosis, my husband found it very difficult. He could see the future ahead of our son, while I could see the present. I immediately went into solution mode. There was no way I was going to sit around and mope. I started reading everything I could find on the subject, to find out how I could help my son develop to his full potential. Because we had been told that we had until the age of 6 or 7 to take him as far as possible, after which he could stagnate. "

“It was with Lucy that it hurt the most, because she's my first. I know I couldn't have known, but I felt a lot of guilt for not having been able to see it before. That said, now that we know, the way we work with her is different, and the approach is easier,” continues Danièle Aitken. For Romy, the diagnosis came more easily. “The shock, if you can call it that, was less difficult.”

A future of unknowns

Without giving it too much thought, Danièle Aitken is aware that the future, especially for Elyot, will be tinged with unknowns and worries. 

In just a few months, the youngest of the siblings will be joining his sisters at school. Another major challenge awaits the family. “A psychoeducator who has been following Elyot's progress for some time now told us that he was fit to enter school at the regular level. Considering that he doesn't speak and isn't potty-trained yet, I really wondered. Finally, since both girls have intervention plans, I usually collaborate with the school psychoeducator. She made it clear that if Elyot went to regular school, we could lose the services of an occupational therapist and a speech therapist. So she took Elyot's file in hand and presented it to her superior. In the end, he'll be going to an adaptation class. I'm very happy, but I realize that if I hadn't asked, and if I hadn't already had experience with my daughters, he would have been in the regular program,” the mother laments. 

To prepare for the new school year, Danièle and her husband decided to have Elyot reassessed. A new brick fell on their heads. 

“Our boy has an overall developmental delay. Although he's very strong, curious and perseverant, he has his limits and rigidities. We've been told that if in two years' time, for example, we go back for a new assessment and there's been no change, we won't just be talking about an ASD, but also a disability. The news literally took me by the scruff of the neck, because I'd done everything I could to take him as far as possible in his development. But in the end, it's not me who decides, it's his body, his brain.”

For her daughters, it's the influence of others that worries the mother of the family.

“The girls are functional and much less limited than their brother. But as they tend to be impressionable, I'm definitely afraid they'll make bad choices. I imagine these fears are the same for parents of neurotypical children.”  

The aftermath

While Danièle was initially in solution mode, today she's more able to see tomorrow, and as with many parents, the worries are there. 

“The more time passes, the more I see the later. There's a good chance that Elyot will live with us, at home, for a very long time. It's certain that my biggest challenge will be to place him in a home so that he's no longer dependent on me, so that he can get used to the idea that I won't always be there. It's going to be extremely difficult to get him to be okay when I'm gone. I'm not there yet, but it's a reality I'm going to have to face sooner or later, and I'm well aware of it,” concludes Danièle.