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how i care for autism: ‘my life became autism’
7 minute read
natacha raphael, centre, with her two sons andrew and adam, 10. andrew, left, was diagnosed with autism spectrum disorder when the boys were two years old.
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natacha raphael, a single ottawa mom of two twin boys, noticed early on that their behaviours were very different.
“we definitely don’t want to compare our kids, but with twins, you tend to compare them without even noticing. i had one child, adam, who was saying choo choo train and repeating nursery rhyme songs and andrew wasn’t. andrew was spinning. i used to say that he thinks he’s a bird because he was flapping his fingers and hands.”
she hadn’t thought at all about autism, but wondered if he had trouble hearing and that’s why he wasn’t singing along to songs or repeating her words like his brother.
autism spectrum disorder (asd) is a broad spectrum that can be different depending on the person. it’s a developmental disorder caused by differences in the brain which mean that people with autism often have problems with social communication and interaction, and repetitive behaviours or interests. people on the spectrum also have different ways of learning, moving, or paying attention.
many advocates say the message to the public is to reframe our expectations of learning and behaviour and understand that people with autism are “differently-abled.”
according to the 2019 canadian health survey on children and youth, one in 50, or two per cent, of kids aged one to 17, were diagnosed with asd. that’s roughly one child in every two school classrooms.
a follow-up report from the public health agency of canada in 2022 looked at the general health, co-occurring long-term health conditions like anxiety and hyperactivity, functional difficulties and school experiences of children and youth on the autism spectrum, identifying the need for specialized support and services.
adjusting to autism care and the social challenges
for raphael, an international public affairs expert with a biotech company, her son’s diagnosis was a life-changer in ways she hadn’t expected. andrew’s hearing was confirmed to be normal by an audiologist who was also a speech therapist. from there, raphael was recommended that she get a referral from her family doctor for a pediatric specialist.
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the process took about four months to see a developmental pediatrician, get tested and receive the results confirming andrew was on the autism spectrum shortly after the boys turned two.
“when i first got the diagnosis, i was very sad,” raphael says. “i was sad for him. i was sad for him because obviously you don’t really understand what it means. the only picture i had in my head was dustin hoffman in rainman.”
“when we have kids, our lives change and our lives become about them, and we think they’re going to play hockey or whatever. some parents just go around to tournaments and to practices. my life became autism.”
she says she read every single book she could get and went to every conference and every autism organization. she joined virtual support groups. she focused on finding what “the next best program for him” was all about to give him a fair chance at having the great experiences that other kids do.
like many people on the spectrum, andrew has difficulty recognizing his emotions and the emotions of others. one of his weekly programs is a peer social session to work on social interaction, and he also has private speech, occupational and behaviour therapy.
“i don’t think people really understand people with autism. they’re so misunderstood. they’re such warm and loving people. andrew is a very kind, loving individual. but because he struggles with emotions, you might not know that.”
that social piece, for one, is an ongoing challenge, she says. now that the boys are 10, adam gets the play dates, the sleepovers and the invitations to birthday parties, and andrew doesn’t. he’s in a regular grade 5 classroom with a shared educational assistant for help and gets excellent grades.
“he’s quirky and he’s different. and he knows he is, he knows he’s different,” raphael explains, adding that he’s also gifted in many ways. he likes comic books and replicates his own. he loves animals and sits and reads books to the family dog, bella. he and his brother are buddies and good playmates, except when adam has his friends over and doesn’t want andrew involved, like typical sibling preferences.
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and no matter what raphael does, she can’t help but notice the reactions of people in public places.
“i go to the grocery store and let’s say for whatever reason, he has an emotion and he’s stimming for like two seconds. you get the stares. if he’s happy, he’s going to jump and flap.” stimming is repetitive behaviour that most experts consider a tool for emotional self-regulation.
those reactions and general world view are in her thoughts when she talks about his future and life as an autistic adult. she’s looking for acceptance and understanding in the years to come. “i just hope that he can find a way to either manage his emotions or manage or regulate whatever he’s going through in his body so that he doesn’t get the looks and that he doesn’t get the judgmental comments,” she says with emotion in her voice. “i hope that from a functional standpoint that he’s strong enough to go through the obstacles.”
taking autism care into her own hands
what gets under her skin most, though, is the self-advocacy and bravery that’s required of parents and caregivers of kids on the autism spectrum. unlike other health conditions that fall under health ministries, autism is treated in ontario by the ministry of children, community and social services and in b.c., by the ministry of children and family development, for example.
“if your child is diagnosed with diabetes, your child is transferred to an endocrinologist and his or her blood sugar is being monitored. and you get the medicines right away. whereas when you get a diagnosis of autism, you don’t even understand what that means. you get a pamphlet and they say we’re going to transfer your file to [a centre for autism services] and we’ll contact you. if you’re lucky, you get a phone call or you get a letter three to six months later inviting you to an introduction to autism meeting,” she notes.
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“with a child’s brain that is currently developing, do you really think that i’m going to sit there and just wait? no other condition, no other disease, no other medical situation would allow that to happen. it’s deplorable. and then they have the audacity to tell you he’s going to be on a three-year wait list for services.”
raphael says she took matters into her own hands and did an extensive search for a specialist herself. the family lived in oakville at the time and she travelled to vaughan, north york and twice to ottawa where she eventually moved the family for a work opportunity. she also wanted to be closer to her family in montreal and keep andrew in ontario’s autism support system for continuity of services and funding.
she also took the reins when it came to finding a daycare and later public schools that would help him most with additional support and transportation. now she’s gearing up to locate the best middle school for andrew when he starts grade 7. her dedication doesn’t show any signs of losing steam, but caregiving can take a toll. does she make time for herself or ever get a break?
“through the years i’ve learned to meditate. i do yoga, i read a lot,” she laughs. “so i do make sure that i do those things. and i know there’s a lot of respite programs across ontario. there was one in oakville. so that can be very helpful from a self-help perspective.”
prepare to be your own autism advocate
but conversation about herself and any sacrifices she’s made is quickly turned back to her son and being his advocate – because that’s what it takes, she says.
“i think andrew is awesome. yes, i enabled him to find the right therapist. i enabled the mechanics of it if you will. but to be fair, he did all the work. for a while i didn’t think he would speak. and we found an incredible speech pathologist in hamilton and she remains his therapist today even though we’re far away, we do it virtually.”
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what do others in her shoes need to be aware of as caregivers and system navigators for a child on the autism spectrum? “i think parents need to prepare themselves that they will be the advocate and they will be the voice of their child for a while until they kind of figure out who they want to be and what they’re going to be,” she says, adding her well-heeded advice about being proactive:
“i would tell parents, especially if the child is still young and you’re suspecting of anything, the first thing is to just be brave and go and get the help that you need. the help is there. don’t think that you’re alone there, whether it’s autism speaks canada, autism canada, autism ontario, there are so many families out there. there are facebook pages for people on the spectrum and there’s definitely support groups. don’t do it alone and ask for help.”
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