A big part of my job is telling families the diagnosis
By Louise Kinross
Dr. Melanie Penner is a developmental pediatrician at Holland Bloorview who focuses on autism. She’s the person who gives parents a diagnosis of autism in their child. Frustrated at the years’ long wait for behaviour therapy in Ontario, she had a study published in JAMA Pediatrics last month that puts the cost of that delay at $267,000 per child over a lifetime. Melanie is happiest when knitting or managing her fantasy baseball team.
BLOOM: Why did you get into developmental pediatrics?
Melanie Penner: Growing up my mom worked as a special education teacher. I was always exposed to kids with physical disabilities, kids with intellectual disabilities, kids with autism, and I loved it. I liked science in school and went to medical school. I remember the day that a developmental pediatrician came and spoke to our class and ever since that day I never wanted to do anything else. I worked as an inclusion counsellor at Parks and Rec camps, so it’s been an ongoing theme in my life. I love to see kids participate and I love to see kids have little successes. I want to be a person who can help them get there.
BLOOM: You also did a degree in health services research.
Melanie Penner: During my pediatric residency I found myself really interested in how care was designed and delivered. I learned that I’m a person who’s quite pragmatic and interested in efficiency. When I was in the second year of my developmental pediatrics fellowship at Holland Bloorview I decided I would do a master's degree in health services research. My daughter was six weeks old at the time, and my husband tried, in vain, to give my baby her first bottle in the Starbucks in the building while I interviewed.
BLOOM: How did you manage to juggle your fellowship, your master's and a new baby?
Melanie Penner: I’m still not sure. I had a six-month mat leave and that’s when I did the interview. I cried the whole way home. But from where I am now, I shouldn’t have been so worried. It was a lot of work, but my daughter was in the daycare here and it was great. It made the transition back to work so much easier, on emotional and logistic levels.
BLOOM: How would you describe your job now?
Melanie Penner: I have two clinical hats. Most of my clinical practice is doing developmental assessments for autism. So I’m giving the parents the first diagnosis. I also work in the psychopharmacology clinic with kids with neurodevelopmental disorders and complex behaviour problems. I’m a scientist in the autism research centre and I do services research for autism. Right now I have a project looking at whether community pediatricians can diagnose autism accurately, instead of families waiting months upon months to come here.
BLOOM: What’s challenging?
Melanie Penner: A big part of my job is telling families the diagnosis of autism and helping them through the initial stages. That takes an emotional toll. I’ve come to learn recently that I can carry that with me in more ways than I think. If I’m feeling poured out emotionally, I don’t necessarily have the reserves when I get home to deal with the negotiation of getting my daughter into bath and bed. Sometimes by the end of the day, I definitely need a bit of quiet time to myself.
BLOOM: Do you do anything proactive to help yourself cope?
Melanie Penner: I’ve taken up knitting. Knitting is my happy place. It totally diffuses the stress out of my fingers. I even knit during meetings and rounds here.
BLOOM: Isn’t it hard to follow a meeting and a knitting pattern?
Melanie Penner: If the knitting is straightforward, it helps me focus. It’s kind of a legitimate fidget to have. There’s one person, who will remain nameless, who likes to sit beside me because she finds sitting close to my rhythmic knitting movements soothing.
BLOOM: There’s the clacking sound of the needles.
Melanie Penner: Yes. It’s a sensory experience. What I like about knitting as well is that it helps me to be gracious with myself. If I make a mistake, I have the option, which you don’t have in life, of going back and pulling everything out and fixing it. But I’ve gotten better at just leaving my mistakes in. I call it artisanal charm, so people know it’s hand-made. It’s a good way to think about forgiving myself and going easier on myself. I’m a recovering perfectionist, so it’s a good exercise for me.
BLOOM: I’ve read articles in the New York Times about how knitting is similar to mindfulness meditation.
Melanie Penner: I’ve read those too. Because of the therapeutic benefits I’ve had I’m going to start a knitting group for teenagers with autism. Knitting aligns so nicely with classic autistic strengths: if you look at a pattern it’s a very visual exercise to go through and knitting involves sticking to a repetitive task that others might find too monotonous. There’s the sensory experience of it. And a knitting circle has a social context but you can do it without making eye contact.
BLOOM: When will that start?
Melanie Penner: I’m putting the materials together and I hope by the fall of 2017. We’ve applied for Centres for Leadership funding. I have knitting teachers on board, a behaviour therapist and occupational therapist to modify the program, and an adult with autism who’s been knitting for 20 years just joined the team.
BLOOM: What’s challenging with research?
Melanie Penner: Rejection is built into the job. Most of the time you won’t be successful with grant applications. That’s been another emotional learning point for me—to learn to bounce back from those things. I’m a huge baseball fan and I’ve had to take on the mindset of a baseball player: that if you’re succeeding 30 per cent of the time, you’re an all-star. If you strike out you can snap a bat over your leg but you still have to go up to the plate next time. Life is the metaphor through which I understand baseball. That’s how important baseball is to me.
BLOOM: Do you play?
Melanie Penner: No, I’m terrible at ball sports. But I manage a fantasy baseball team. You get together with a bunch of people and draft players.
BLOOM: What do you love about your work?
Melanie Penner: I get to see families six months after the autism diagnosis and what’s amazing is that over that time, you see that some families are really thriving and their kids are thriving. You often leave them in this difficult state, and then six months later you get to see how their thinking around the meaning of autism has changed. It’s changed not who their child is, but how they view certain things about their child. They have a better understanding of their child and we get to celebrate the gains their child has made.
With research, rewards are a bit more clearly defined: when you get a paper accepted or get a grant, that feeling is incredible. I try to ride it as long as I can. When I found out I got a small CIHR grant for my study looking at the accuracy of pediatrician diagnosis of autism, I was crying so much I couldn’t get the words out to my husband.
BLOOM: Have your thoughts about autism changed?
Melanie Penner: Most of what I know about autism comes from talking to kids and teenagers with autism and their parents. I don’t get much exposure to adults, but I do read a lot of literature by adults. My thinking has changed. Being a physician, and coming from a place where we think in terms of biomedical disease-based models, even though we’re trying to break out of that, this [rehab] world is so different. I see the ways that acceptance plays into things and I’ve tried to learn a lot from neurodiversity advocates. One thing I keep in mind is that the construct of autism I have now shouldn’t be the same way I’ll think of it in 10 or 20 years.
BLOOM: What drew you to this area?
Melanie Penner: Autism captured my imagination. I think it’s the way our population thinks so differently. The way my patients see the world and express themselves is always a pleasant surprise and it challenges me and my assumptions.
BLOOM: How do you balance acceptance of disability with our desire to fix things?
Melanie Penner: Even from the time of diagnosis, I’m trying to bring in these ideas of acceptance now. A lot of our therapies have focused on trying to give children the skills to function in the neurotypical world. The bigger work we have to do is making the world a more friendly and inclusive place where people with autism and other differences can shine and contribute in the way they want to. Often parents will ask about what they can do to make their child normal. But if the child is doing something like flapping—that’s not hurting anybody—I tell them that’s not a ‘him’ or ‘her’ problem, that’s an ‘us’ problem. I have no interest in trying to take those things away.
BLOOM: It must be hard to be the point person giving a diagnosis when the average wait for publicly-covered therapy is two and a half years.
Melanie Penner: It’s always a difficult discussion that contributes to some of the emotional baggage I end up with. It’s a two-tiered system where families with means can pay privately to access therapy right away. We do have some access to charity funding that can be put towards private services sooner, and we’ve figured out little workarounds that we try to employ with the help of our social workers. I also have parents who seek out a lot of information on their own and implement different parts of therapy. Some parents have even trained to become behaviour therapists.
BLOOM: What are your hopes for the future?
Melanie Penner: I hope my work can help to create a more equitable future for people with autism and their families.
Melanie was the focus of this Ontario Medical Association video Putting Patients First. The photo above is a still image from the video.
