30 November 2018 |
Clinician-scientist knits a new social fabric |
By Berton Woodward
If you know Dr. Melanie Penner, the name of the group seems a natural. Dr. Penner is a developmental pediatrician and researcher at Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) working with young people with Autism Spectrum Disorder (ASD), a neurodevelopmental disorder. And she is, by her own account, “a very avid knitter.”
Hence, KneuroKnits.
That’s the therapeutic group she recently set up for kids with ASD  and other disorders to get together and, yes, knit. Why? “I started to think about the way knitting benefits me,” Dr. Penner says. “Sometimes it helps me to focus and to relieve stress and anxiety, and I wondered if the therapeutic benefits I experience could extend to my clinical population of children and youth with autism.”
So she put together a team of colleagues and knitting instructors, and a weekly pilot project launched recently at the Ontario Science Centre. This group will also include young adults with other neurodevelopmental disorders, physical disabilities or an acquired brain injury. Another KneuroKnits group is planned to begin meeting at Holland Bloorview in January. The team will be studying participants’ experiences to examine the program’s benefits, and may even publish a manual so other sites can organize KneuroKnits, too.
“For people who have difficulty with social situations, knitting is a nice way to be in a social situation but not have to make eye contact,” Dr. Penner says. “You’ve got something you’re doing with your hands and it’s quite socially acceptable. At the same time, people are coming together for a shared experience and interest, and there’s a really nice rhythmic-sensory aspect to it as well.”
Insights like this are a part of what makes Dr. Penner so valued at Holland Bloorview, where she is also the Holland Bloorview Kids’ Rehabilitation Hospital Foundation Chair in Developmental Pediatrics. One of her key research interests is service delivery. In 2016, she made media waves as the lead author of a study in JAMA Pediatrics showing that eliminating wait lists for intensive autism treatment, then averaging 2.7 years, could save the Ontario government some $53,000 per person over their life to age 65. Moreover, society at large would save $267,000.
Naturally, paying for intensive treatment up front – before age four – is expensive. “But it really does pay off in the long term,” says Dr. Penner. “Through that investment we can improve people’s independence over their lifetime, which has a lot of additional economic benefits. We included productivity – their ability to work in a job – and the cost of caregiver time for families, including for adult children.”
Holland Bloorview “has been a great partner,” explains Dr. Penner. In 2017 she published a study after conducting in-depth interviews with Toronto pediatricians, finding there were many possible reasons children were waiting for an autism diagnosis. “We found that for some cases of suspected autism, it wasn’t so much the doctors’ ability to make a diagnosis as their confidence in being able to manage all the different resources and referrals after making the diagnosis,” she says. As a result, Holland Bloorview used provincial funding to pilot a program allowing community pediatricians to send families of children they diagnose with ASD directly to its own social workers. “It really does take someone whose full-time job it is to help families navigate the system,” Dr. Penner notes.
Growing up in St. Catharines, Ontario, Dr. Penner was always exposed to children with special needs, as her mother was a primary-school special education teacher. “I was doing projects on disability in high school,” she says. Now, after three and a half years at Holland Bloorview, she devotes half of her time to her work as a clinician and half to her work as a scientist. “This is my dream job in a lot of ways.”
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