Let me introduce myself. I am Julie Panneton and I am autistic. For the longest time, I didn’t state this publicly because I’ve never wanted to be the token “disabled” hire throughout my 20-year career in linguistic services, more recently as a reviser at one of the Big 4 accounting firms. I’ve been on medical leave since October 2010 not due to autism, but due to an autoimmune disease.
Now back to being diagnosed autistic as a child. I regressed at 22 months old following my sister’s birth. There were also delays in development of fine and gross motor skills, including hand-eye coordination and balance. When I was almost a 5-year-old, paediatrician in my birth town, Trois-Rivières, said to my mom, in my presence, “Julie will be lucky if she graduates secondary school”. My dad, now a retired teacher, wasn’t too impressed with that statement when mom relayed it to him. He pressed for a referral to Sainte-Justine paediatric hospital in Montréal.
So, we did the 2-hour trip in early July 1970. It wasn’t a pleasant experience since I had motion sickness, even on short distances. After a bunch of tests, including an EEG, Dr. Lafontaine diagnosed me with autism, a neurodevelopmental disorder. When he spoke to me and my parents, explaining in plain language what I had, he was adamant on one thing: “Keep your daughter in the regular school system and have her do therapy for a few years after school.”
My therapist, a psycho-educator who applied the principles of applied behavior analysis, was always kind. I have a cherished picture of myself with her daughter on my lap. There were so many things Madame Giroul had to teach me because they were a struggle for me, like distinguishing left from right or shapes, lacing shoes, walking straight over a line. I recall the lacing boot, the puzzles to match words and images of animals.
I saw this therapist about 20 hours a week throughout the summers, starting with the one before kindergarten and including the summer before Grade 6. During the school year, it was more like 10 hours a week. I also had 3 hours every Saturday morning at the school gym with the physical education teacher to help me improve with hand/eye coordination, but also to not be singled out in regular class during school week; the teacher, Monsieur Lebel, did this free of charge.
I had to get private lessons to learn how to skate and ski. Friends of my parents gave those lessons free of charge. Learning how to ride a bike, even with training wheels, was a struggle. My dad sure was patient with that one. When it came to swimming, it was another battle. I’m glad I stuck to this activity too. Why? Cycling and swimming are my two favourite sports to practice now.
I’m fully aware I’m lucky to have been diagnosed relatively early for the 1970s, that my needs for therapy were not greater or that I even got access to therapy in a small town with scarce resources.
I realize the sacrifices my parents made to be able to pay for my therapy on one income, but also the ones my siblings and myself made. We were the children in school with the one pair of shoes for the entire school year.
I am grateful for the therapy I received as it allowed me not only to develop certain skills and be able to learn, but it also led to me having a fulfilling career and life. It doesn’t mean my path in life has been straight or devoid of bumps and detours along the way.
I got accepted in a program with enrolment quota, occupational therapy, at McGill in 1984. The admission letter mentioned the selection committee had found quite impressive the essay I had written to accompany my application. I had to turn down the offer because I didn’t have the financial means to pay room & board. I had no other choice but to study medical biology at the local university in Trois-Rivières. After 2nd semester in this program where I was doing extremely well in some courses and just OK in others, I made admission request for translation BA and wrote admission exam. I got in.
Eight months later, I wrote the admission tests at Concordia and Ottawa universities. I was admitted to the BA specialized in translation at both universities. I made the plunge to go study at Concordia in Montréal in August 1986, and it was one of my best decisions ever. It isn’t easy for an autistic person to make decisions, change routines, adapt to new environments, socialize with new people. Yet, I’ve done this a few times already.
It has been quite taxing at times. I often had to work twice as long on school assignments as my classmates did. Being autistic meant I had to prepare longer for job interviews. It has meant “pushing back” from expectations or deadlines at workplaces that were unrealistic even for a non-autistic person.
I am extremely proud of what I managed to accomplish academically while working 15–25 hours a week at university or working full-time after university. I have a BA specialized in translation, a BSc in biology, a certificate in business management and a certificate in landscape design. I also became an EN-FR certified translator on my first attempt to write the certification exam in 1995. I am also an FLMI, an insurance industry designation.
I believe the most important thing I learnt from ABA therapy was that I can adapt to new circumstances, that I can accomplish a lot by simply breaking projects down into steps, that I must respect others’ boundaries but also make my own boundaries and needs respected, that social interactions involve a back and forth, that I won’t be liked by all and I don’t need to be liked by all, that it’s OK to turn away from people who demean me or to refuse to let some people into my life or return into my life.
I often wonder what my life would have been like if I hadn’t been diagnosed at age 5, if my needs for therapy had been greater, if I hadn’t gotten ABA therapy from kindergarten until Grade 6, if my parents had needed to cut down on hours of therapy or forego private lessons for skating and skiing because of cost or scarcity of resources, if I hadn’t gone to a school with smaller class sizes from Grade 6 to 11, then in CEGEP.
What if I had been English-speaking in Trois-Rivières whose population is 99% French-speaking, back in the 70s? Therapy resources were scarce in French. So, I can’t imagine what it was like for English autistic children when it came to therapy or special needs support within the regular public-school system.
I now live in Ontario and follow on Twitter parents whose children have French as their first language. Those parents speak up about having a hard time getting their children access to autism services in French. They live in predominantly English communities or in remote areas where resources for autism services in both English and French are scarce and the same holds true for educational support from kindergarten until Grade 12.
I have friends and relatives whose autistic children were diagnosed late. Their needs for therapy are greater than mine ever were. Yet, these children had or get little support. Some scraped by to finish high school or dropped out without graduating, have the hardest time keeping a job or sustaining relationships with siblings, relatives, friends or intimate partners.
I have spoken of my experience and the experience of others mostly because I want to not only underscore the importance of early autism diagnosis and assessment of therapy needs by physicians specialized in developmental pediatrics, but also the imperative for therapy to be provided by regulated and licensed professionals.
In my opinion, it is high time that all provincial, territorial and federal public health plans Canada-wide cover “medically necessary” therapy for ASD & other neurodevelopment disorders like FASD, ADHD or CP, regardless of age. And by therapy, I mean ABA, IBI, occupational therapy, physiotherapy, speech therapy and psychotherapy. I include psychotherapy because at later stages in life, it might be the most appropriate treatment for the autistic child or adult who’s having difficulty adapting to new life circumstances or coping with the cancer or major illness diagnosis of a parent or caregiver.
In my opinion as an autistic person, I consider it’d be best to foresee the necessity of “maintenance” therapy through the person’s lifetime and budget for it. I think this would be much better public policy to address what is basically a healthcare need.
I truly believe that when it comes to support of people who have neurodevelopmental disorders, the strategy can’t be focused strictly on health care. There’s also a need to address accessibility to public education, skills training, work integration and supportive housing within the community. I will leave it to other advocates to speak up about these aspects as they are more verse about them than I am.
I thank you for your attention.
About the author: Julie Panneton, C. Tr. (EN-FR), FLMI, was a Reviser, Linguistic Services, at Deloitte Management Services LP from April 2007 until October 2010 when she was forced to go on long-term disability due to health reasons. She is now focusing her energy not only on striving to thrive despite her mental and physical conditions, but also on advocating for patient partnership in health care, for a more comprehensive universal Medicare in Canada and accessible, inclusive and secular public education Canada-wide.
“Acceptance however does not equal complacency. It is up to us as patients to do whatever possible to optimize our quality of life and not just live with our diagnosis but strive to thrive despite it.” (Dr. Soania-Mathur, Family physician living with Parkinson’s Disease, https://www.huffingtonpost.ca/soania-mathur/living-with-chronic-illness_b_13959880.html)