Weight 'talks' leave autistic youth feeling blamed, shamed

By Louise Kinross

Obesity in children is one of the most serious public health challenges according to the World Health Organization. Children with autism are more likely to have higher weights because they’re often less active, can have unusual eating patterns, and may take medication that causes significant weight gain.

The literature encourages doctors to talk to children about the risk of unhealthy weight, but to date there’s been no research on how to do this without harming a child’s self-esteem. A new study in the journal Autism is the first to ask autistic youth themselves what it’s like to be on the receiving end of clinic talks about their weight.

Researchers interviewed eight youth seen at Holland Bloorview’s psychopharmacology clinic who take atypical antipsychotics to treat irritability and aggression. These drugs can cause a pound of weight gain a week, probably because they cause insulin resistance.

Most of the children aged 10 to 18 were interviewed in their homes after receiving a social story that explained who the researcher was, and what to expect from the interview. Patrick Jachrya was the lead author on the paper, which comes from a research program headed by senior scientist Amy McPherson. We talked with Amy.

BLOOM: Why was there a need for this study?

Amy McPherson: This study came about after a few years of Evdokia Anagnostou and I talking in the coffee lines at Holland Bloorview about the work I do on weight in kids with disabilities.

Evdokia, who co-runs our Autism Research Centre, felt my work was much needed in working with children with autism, especially those she sees in the psychopharmacology clinic. One of the side effects of the drugs these children are on is considerable weight gain. Evdokia was having conversations with children and families about this and felt she didn’t have the training or support to know how to approach these talks.

BLOOM: What were the key results?

Amy McPherson: Generally the kids found weight discussions very anxiety provoking. They were very nervous about having these conversations, especially if the topic came out of the blue and they weren’t expecting it. Trust was an important part of a relationship to have these discussions without distress.

Children had often seen many health professionals before coming to Holland Bloorview. Unfortunately, all participants described having experienced weight stigma from clinicians (who very likely didn’t intend it). They said they felt the stigma, and it made them afraid to talk about their weight because they were expecting to be made to feel very badly about it.

BLOOM: How does weight stigma in the wider world influence these talks?

Amy McPherson: It’s fair to say that the youth had internalized the societal message that smaller bodies are better and desirable and healthy. This had often been reinforced at home by their parents, and also by their doctors and nurses, who they see quite regularly. That’s the world we live in. There was some evidence that they had started to perseverate on losing weight, and that it became a preoccupation.

BLOOM: To what did the doctors attribute their weight gain?

Amy McPherson: We know that many doctors and nurses assume that kids are eating too much and not exercising—even though medication likely has the biggest effect. Children were made to feel lazy and blamed. They feel like they’ve failed, because they’re being compared to typical weight charts. Families might be told ‘your kid is just off the charts.’

BLOOM: Even though those charts aren’t made to reflect weight gain you would expect as a drug side effect?

Amy McPherson: Yes. It’s viewed as a personal failure and within the control of the individual. Even though we know that weight is affected by so many things beyond the individual.

BLOOM: Some of the participants described professionals scolding them and trying to scare them. Why doesn’t that approach work?

Amy McPherson: How long have you got? We know many health-care professionals think that they can shock people into losing weight. The science tells us that this approach doesn’t lead to weight loss.

BLOOM: What does it lead to?

Amy McPherson: Weight gain. It can increase poor eating habits and overeating and binge-eating. And when children feel blamed and shamed, they don’t feel like going to the gym and working out. They avoid people. It also works on the stress hormone circuit, so that can lead to weight gain. Blame and shame have absolutely the opposite effect of what health professionals intend.

BLOOM: It struck me that the youth described incredible anxiety about their weight, and especially if they didn’t realize the doctor was going to bring it up.

Amy McPherson: Kids with autism often feel quite comforted by routine and knowing exactly what’s going to happen, so this is a particular population that may benefit from a more structured approach to talking about weight.

BLOOM: How would that look?

Amy McPherson: The number one question is to ask permission. ‘Is it okay if we talk about your weight today?’ Or even better, something like ‘Is it okay if we talk about how you can stay healthy and energized?’ If they say no, you can ask if it’s okay to talk to their mom about it. By focusing on growth and health, instead of weight, clinicians can make it a regular part of discussion and then it’s expected, and it takes the stigma out of it.

BLOOM: It was fascinating that the youth said it made them angry that they perceived doctors and nurses as trying to change them.

Amy McPherson: We’re always trying to fix and change. One of my favourite lines is when clinicians say: ‘All you have to do is this…’ By taking that approach we’re putting the sole responsibility onto the individual, and not recognizing the many uncontrollable factors that lead to higher weight. We don’t know how to treat childhood obesity generally, so we’re often very unrealistic about what we’re asking children with disabilities to do, given the complexity of their lives.

BLOOM: Yes, if losing weight was a simple matter, there wouldn’t be an industry making billions of dollars off it.

Amy McPherson: We’re often asking families to fundamentally change how they function and not recognizing what a huge thing that is.

BLOOM: I guess in many cases families feel that the entire family has to change their eating habits?

Amy McPherson: Yes. While promoting healthy habits across the family isn’t necessarily a bad thing, with children with autism, food is often used for good behaviour. So if a family has found a way to manage behaviour so that everyone can be happy, we’re asking a lot to take that away from them.

Families feel profoundly guilty that they’ve given their approval for their kid to go on medications that lead to huge weight gain. And to be fair, heath professionals often have a lot of moral distress that they prescribe these drugs. Unfortunately, they’re often the only thing that’s reduced a child’s self-harming and enabled them to function, for example, to go to school.

BLOOM: So there isn’t really an alternative. Youth in your study said they felt negative when professionals used the words fat, obese and overweight to describe them. Interestingly, they said when language like that was used, they immediately tuned out what the person was saying.

Amy McPherson: We’ve done quite a lot of work on language in our interactive casebook on how to have conversations with children about weight and health. Phrases like higher weight and bigger body, which are purely descriptive, may be helpful. But there isn’t one word that you use with everyone. Clinicians need to talk to families about terms they find acceptable.

BLOOM: In what way did the youth feel clinicians stigmatized them?

Amy McPherson: By making it seem like a personal failing, and the perceived assumption that they were being lazy, eating bad food and not exercising. This was upsetting given the huge role of medication in their higher weights.

BLOOM: These medications were causing dozens of pounds of weight gain, right? Now just a few pounds?

Amy McPherson: Yes, for some kids it could be an increase of 20 to 30 pounds. There are risks associated with higher weights: they can cause a metabolic syndrome that’s a precursor to chronic conditions like Type 2 diabetes or heart conditions. But the discussion can’t centre just around those extreme cases. People of many body sizes can be healthy.

BLOOM: How did the clinicians usually tell kids they could lose weight?

Amy McPherson: Eat less, move more. All you have to do is…

BLOOM: The study talked about how these children became obsessed with their higher weights, and this made them feel bad about their bodies.

Amy McPherson: Many had huge self-esteem issues. They felt they had to achieve a perfect weight. They knew it would please people if they lost the weight, but they couldn’t do it.

BLOOM: What advice can you give health professionals on how to approach this?

Amy McPherson: In our casebook, we list a number of sentence starters that clinicians can try out. Instead of talking about a child’s ideal weight on the Body Mass Index (BMI) chart, they can talk about a child’s best weight—which is the weight a child is at when they’re living a healthy life that they truly enjoy. They need to know that there are many ways of being healthy.

BLOOM: What are next steps for the research?

Amy McPherson: We’re using the casebook with our autism clinicians here and asking for their feedback on how they’re using it in their clinical practice. In the future, we’ll do a broader implementation study involving a number of different children’s clinics.

A related study in Autism Research includes interviews with the same youth, as well as their parents and health professionals. Notably, professionals said they didn’t have sufficient training to feel confident in identifying and addressing higher weights in children with autism.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

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Talking to kids about weight: What works and what doesn't?

By Louise Kinross

Last month the American Academy of Pediatrics released a policy statement on how children with obesity are stigmatized, and how health professionals can help reduce that stigma when talking about weight.

This month, Holland Bloorview launched an interactive casebook on how to have positive conversations about weight and health with children, including those with disabilities. The book focuses on healthy lifestyles and is written for health professionals across disciplines

It brings together the latest research, video stories from clinicians and families, simulations and resources.

BLOOM interviewed Amy McPherson, a Holland Bloorview scientist who authored the casebook with knowledge translation specialist Christine Provvidenza and post-doctoral fellow Laura Hartman. A multi-disciplinary team also worked on the project and input came from experts across Canada.

BLOOM: In what way is weight an issue for children?

Amy McPherson: One in three kids in Canada has overweight or obesity. Kids with disabilities are two to three times more likely than their peers to experience this.

BLOOM: Why do you say kids ‘have,’ as opposed to, ‘are’ overweight?

Amy McPherson: It’s person-first language. We’re trying to get across that obesity is a disease, like diabetes, so something you have and not something you are. This is the language recommended by the Canadian Obesity Network.

BLOOM: What is a casebook?

Amy McPherson: A casebook helps bridge the gap between what we know and what we do in health clinics. It combines research evidence, experience and resources in one place and provides practical clinical guidance to heath professionals who work with children.

BLOOM: Why is a casebook needed?

Amy McPherson: We know that health-care professionals who work with children report that they don’t feel confident having discussions about weight. They don’t feel like they have the training to bring up these issues. They’re often worried that they’ll ruin a therapeutic relationship they have with a child and family by offending parents and children, or will cause self-esteem issues in the child. That speaks to the weight bias in our society. Why would having a higher weight be any different than having blue eyes? We associate negativity with weight, and so we’re reluctant to mention it.

BLOOM: What should professionals know about higher weights?

Amy McPherson: One of the main messages in the book is that obesity is not a personal choice. It’s complex, and affected by many factors. It’s not a case of ‘eat less and exercise more.’ If it was that easy, no one would have obesity. Genetics influence weight, as does sleep and your metabolism and medication. When you lose weight, your body actively fights it.

We encourage professionals to talk about growth and health rather than weight and size. If they are tracking a child’s growth and they see a steep trajectory, that may be an opportunity to step in and talk about the impact of weight on health.

BLOOM: What are the key messages you want to get to professionals and families?

Amy McPherson: One is that before talking about weight-related topics with a child, ask for permission. First, make sure you’re in a private environment and the child feels comfortable. Ideally they will know the professional. If the child doesn’t want to talk about it, say ‘Okay, we’ll revisit it next time’ and ‘It’s always okay to come back and talk to me, or someone else, about it.’ We need to build rapport with families who might be sensitive about it.

BLOOM: What are other suggestions in the book?

Amy McPherson: To recognize the strengths of children and families and what they’re doing well. Almost anything can be made into a success, and can be used with the child and parents to motivate and engage them. Perhaps they made Tuesday a pop-free day. That’s awesome. Focus on solutions. Maybe they turned off the TV earlier than usual and played a game outside. Find where their strengths are.

BLOOM: How is the book different from reading a research paper?

Amy McPherson: We wanted to make it really practical so it could be used in everyday practice. To create the content, we held two workshops with researchers, clinicians, students, parents and youth. We wanted to make sure that people with different learning styles could benefit. So we include diagrams and videos. We have evidence-based research summaries in there but we break everything down. For example, we have six sentence starters for clinicians who don’t know how to bring up the topic. We have four simulations to spark conversation on what works and what doesn't. There’s a one-pager clinicians may want to stick on the wall.

BLOOM: I’m wondering if one of the reasons health workers don’t want to address weight is that there isn’t an easy answer in terms of treatment.

Amy McPherson: Weight management in all children has a low success rate. We haven’t worked out exactly how to do it with typically developing children. With children with disabilities, there are extra complexities. We need more research to offer recommendations on weight management. But if we can get professionals talking about being active and eating well for your health, and not make it about weight and a number on the scale, that may have benefits. We want to give the message that the whole family can get involved in moving more and feeling good about their bodies.

BLOOM: What are next steps?

Amy McPherson: We’ve applied for Centre for Leadership funding at Holland Bloorview to do an implementation study. We’d like to work with a group of clinicians and trainees here to create a curriculum and a road map of ‘this is what you do to get this into your clinic.’ We would identify the gems that are immediately useful. We’d also like to target a number of clinics across Canada to look at the impact of using the casebook and whether it’s changing behaviour.

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For this scientist, a healthy weight isn't a number

By Louise Kinross

Amy McPherson is a scientist at Holland Bloorview who is co-lead of our Centre for Leadership in Participation and Inclusion. Amy’s research looks at health promotion and obesity in children with disabilities. Eight years ago she packed up her life in Britain and moved to Toronto to become a scientist in our Bloorview Research Institute. “I’d been teaching psychology and sociology to medical and nursing students, and I wanted a new adventure that would focus on my research,” she says.

BLOOM: What led you into the field of children’s rehab?

Amy McPherson: In the U.K. I did my PhD in self-management in childhood asthma. My research has always looked at empowering kids to look after their health by giving them the knowledge and skills—but also the feeling of control over their health—so that they can manage a chronic condition.

When I saw a job opportunity in Participation and Inclusion here it encapsulated my philosophy of working with children with long-term conditions to help them participate and be as active as they want and can be. I did an interview on Skype and I came here for a meet-and-greet. Then I moved 3,000 miles.

BLOOM: Was that a hard decision?

Amy McPherson: It was a no-brainer. I was really drawn to the fact that no one here talked in terms of deficits in kids with disabilities. I met people who were committed to giving kids with disabilities a future that was as meaningful as any other kid’s future.

BLOOM: Can you describe your research?

Amy McPherson: When I first came I was interested in our Busy Bodies program, which promoted healthy eating, physical activity and feeling good. My office was embedded with clinicians in Therapeutic Recreation and Life Skills. That was a phenomenal opportunity to understand what went on in the hospital from a clinical perspective. I worked with therapeutic recreation specialists to understand what the kids in the program thought about health: ‘So you have a disability, what does that make health look like to you?’

It was a great introduction to rethinking my notions of what had been quite a medical approach to self-management, and looking at why participation matters. That was a springboard into looking at different aspects of health, wellness and happiness and working with kids with an existing condition to see what they want their health to look like.

BLOOM: Where does weight fit into that?

Amy McPherson: There’s a two to three times higher prevalence of obesity in kids with disabilities. That puts them at risk of the same secondary conditions that any child with obesity faces. But in addition, it can be harder for a child with a disability who is heavier to move around, do self-care and be independent. Different diagnoses also come with specific challenges that make it hard to manage weight.

BLOOM: How can we help clinicians and families address weight issues?

Amy McPherson: I’m very interested in how we talk about weight and weight management. Often kids get weighed and measured when they come in for regular checkups, yet we hear from clinicians that they have concerns about talking about the topic. This is true with kids in general and their families, as well as kids with disabilities. Doctors don’t feel confident and are worried they’ll ruin a relationship. It’s a hugely stigmatized issue and by doctors saying ‘I don’t want to offend anyone,’ they’re acknowledging the implicit stigma in society that higher weights are bad. We want to find ways to address weight and wellness that are not stigmatizing and judgmental, but supportive and positive.

BLOOM: How do you do that?

Amy McPherson: We’re doing something super cool. Working with Christine Provvidenza, we got Centre for Leadership funding to develop a knowledge translation casebook that is a practical handbook for health professionals about how you talk about weight. It will have things like sentence starters and scripts and simulations of positive and less-positive experiences. It will also have case studies and learning guides and will talk about what the evidence says.

One of the fun parts is that we’re working with families, youth, clinicians, researchers and students to co-develop the content for this handbook. It will be online and interactive. It’s for all children and parents, but will also have chapters addressing common challenges related to different disabilities.

BLOOM: What’s an example of neutral language?

Amy McPherson: The doctor could say: ‘Would it be okay if we talked about how you can feel healthy and energized?’ Or ‘Would you be interested in knowing more ways to stay healthy? How can I help?’

We want to encourage clinicians to have a conversation about wellness that suits the child. You may live in larger body, it doesn’t bother you and you have no medical complications. So we talk about what makes you feel well. Or, you might have a higher weight and a lot of medical complications and are distressed about it. So it may be appropriate to focus more on the weight and work together to reduce those health risks. But we need to always address it in a positive way. There isn’t a one-size-fits-all, and not everyone who weights over ‘x’ has to be subjected to a medical intervention. It’s not realistic and the evidence doesn’t support that.

Research shows that the vast majority of people who lose weight regain it. Physiologically our bodies will always try to put that weight back on, and it’s got nothing to do with will power. So what is sustainable for this person, and what does health and wellness mean to them? That’s hard for people to get their minds around, because we’re so used to saying ‘let’s fix this, let’s get the number down.’ But we’re setting up people to fail when we do that. There are physical ramifications to putting on and losing weight and it can also be incredibly damaging psychologically.

BLOOM: I’m assuming that one of the reasons doctors don’t like to talk about weight with children is that no one really knows what to recommend?

Amy McPherson: There’s very little evidence about how talking about the topic in different ways affects outcomes. In the future, we’d like to evaluate our knowledge translation casebook in different health settings to start to understand this area more.

BLOOM: What do you love about your work?

Amy McPherson: I love designing ways to figure out what’s really important to individuals and how we can support that person to work towards that. I’m a huge fan of strengths-based approaches. What are you really good at? What are your resources and strengths? How can we support you to thrive, whatever that means to you? I’ve worked on topics like incontinence, sexuality, weight management and wellness. We just received CIHR funding for a study on solution-focused coaching for kids on health promotion goals that they set for themselves. That’s for kids with spina bifida and cerebral palsy.

BLOOM: What’s the greatest challenge of your work?

Amy McPherson: The hardest thing is to break away from the idea that health is a number and it’s just a case of eating less and moving more.

BLOOM: What emotions come with this work?

Amy McPherson: A whole mix of emotions. It’s exciting to be part of a movement that’s enhancing the field. I’m very comfortable with an approach on wellness that is individualized and means something different to each person. It compliments with my own personal philosophy that rather than ‘How can we get you to live in a smaller body?’ the question should be ‘What do you find motivating?’ A person’s best weight has been described as whatever weight a person achieves while living the healthiest lifestyle they enjoy, which I think is a lot more feasible and positive for most people.

The work is also inherently frustrating because it’s complex, and you’re trying to figure out the best way to move forward without doing damage to anybody.

The stigma around kids with disabilities and people who live in bigger bodies makes me feel very sad. And when you have the two together, it’s an intersection of multiple stigma.

BLOOM: I would like us to do more research looking at how we can help children feel comfortable in their own skin. I’ve heard of kids with amputations who wore hot, heavy prostheses for years, even though they didn’t help functionally. And then when they feel more comfortable with their bodies, they abandon them. One woman with no arms in a BBC interview described it as being her ‘independence day.’

Amy McPherson: There are huge parallels between the stigma associated with size, and the stigma associated with other body differences. Difference is not emphasized enough. For example, very often the health benefits of things like being active and eating well are overshadowed by weight loss and unrealistic body ideals. Traditionally in rehabilitation, we haven’t been so good at looking at the big stuff that matters to youth with disabilities—beyond the physical, the function, the fix. We hear that our kids in school often don’t get health and sexuality education. I’ve heard of students with disabilities being told to leave the classroom during those sessions because they don’t need it. We can do so much better.

BLOOM: If you could go back and give yourself advice when you were just starting out in this work, what would it be?

Any McPherson: You’ve got to be really tenacious. It’s a bit of a roller coaster, but you need to stick with it and stick with high standards at all times. And collaborate. That’s where the fun is—in working with other scientists, clinicians and families to come up with, if not solutions, then approaches to the things that are really important to children and families.

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Why child disability research belongs in mainstream journals

By Louise Kinross

Children with disabilities are two to three times more likely to have obesity than their peers.

Yet when Holland Bloorview scientist Amy McPherson looked at a systematic review of studies about obesity prevention in kids, most excluded those with disabilities.

“If you’re testing a new way to get kids active, you may shy away from recruiting kids who physically struggle because that will affect the data,” Amy says. “It may be less likely to show your intervention can work. But if we exclude children with disabilities from these studies, how will we develop interventions for them?”

One way to raise awareness of pediatric rehab research, which is a young field, is to send papers to general medical and clinical journals, rather than just disability journals, Amy says. But it’s not easy to get a paper accepted.

Comments from expert reviewers, who assess the rigour of a paper, often reflect a lack of understanding about the unique challenges and opportunities of disability research.

“For example, a reviewer recently suggested a colleague exclude children who are not verbal from her study, instead of relying on parent reports,” Amy says. “But these are our patients. If we’re developing interventions, we can’t cherry pick patients. We can’t inform change if we don’t take diversity into account.”

A common reviewer criticism is that a study doesn’t use outcome measures that have been tested on children with disabilities. “But most measures are developed for typical kids,” Amy says. “When we try to develop ones for our kids, we’re told the numbers are too low. We’re caught between a rock and a hard place.”

Amy notes that reviewer comments sometimes reflect the expert’s own biases. For example, she submitted a paper on a study to evaluate the effectiveness of coaching to improve diet and physical activity in boys and men with Duchenne muscular dystrophy.

One reviewer said that to ask participants to identify a “preferred future,” which was one part of the intervention, was callous, because the condition is degenerative.

“We were enrolling kids aged 10 to 19, and people with Duchenne can live till their '30s these days. Health and wellness coaching is important for everyone, especially those with a disability. We want to empower clients to identify personally meaningful goals, hopes and aspirations for the future. Whatever it looks like, young people with disabilities have a life. They deserve to get the best possible care, and we do that through research.”

One way to gain acceptance into mainstream journals is to partner with a wide variety of clinicians and researchers across disciplines, Amy says.

Getting her national, call-to-action paper on weight in children with disabilities published in Childhood Obesity—a prominent, mainstream obesity journal—is an example.

“This paper was the result of efforts from people across many disciplines, life experiences and backgrounds,” Amy says. “Collaborations like this show the broader implications that disability research can have. For example, learning how to best support kids with a wide range of abilities to lead healthy lifestyles can be useful for those working with typically developing kids who benefit from a more individualized approach. It can also support doctors who may only see one or two kids with disabilities a year and wouldn’t routinely look at the rehabilitation literature."

Amy says we need to continue advocating within the broader science community to find common ground in research on children with and without disabilities.

“Sometimes when we submit a paper to a journal or present at a conference, we get responses that question the value of doing research in kids with disabilities. Our sample sizes are small. Our kids are a different population, but there are ways to include them, or to report the data differently. As researchers, we have a shared accountability to make a difference in the lives of children with and without disabilities.”

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For people with disabilities, the need to stay fit starts early

By Louise Kinross

Last year we reported that children with disabilities are two to four times more likely to be overweight, and two to four times less likely to be physically active, than their peers.

The numbers were shared at a consensus-building workshop at Holland Bloorview that brought international experts and families together to address weight management.

Canadian Living has an excellent piece on this topic in its November magazine: Staying fit when disabled.

Many of you will recognize Joanna Miedzik, who's interviewed in the feature about her own struggles with weight growing up with spina bifida. Joanna is one of Holland Bloorview's amazing receptionists.

The story includes research from scientist Amy McPherson in the Bloorview Research Institute and commentary from Lorry Chen, one of our clinical dietitians.

Most important are four tips to help your child with disabilities stay active. Click on the link above.
 

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Research neglects alarming obesity rates in disabled children

By Louise Kinross

Children with disabilities are two to four times more likely to be overweight, and two to four times less likely to be physically active, than their peers, according to Dr. James Rimmer, a professor in the School of Health Professions and research chair in Health Promotion and Rehabilitation Sciences at the University of Alabama.

Despite these alarming numbers, the bulk of U.S. government funding goes to research into weight management for typical children, Dr. Rimmer said.

Dr. Rimmer was speaking today at a consensus-building workshop at Holland Bloorview in Toronto bringing together international experts and families to look at research to address weight management in children with disabilities.

Dr. Rimmer shared a number of American studies that showed dramatically higher rates of obesity in children and teens with physical and intellectual disabilities and lower rates of participation in school gym class and recess and extracurricular activities. “There is a tendency to not take these children out for physical education or recess and to involve them in more sedentary activities,” Dr. Rimmer said. In addition, after-school programs and playgrounds in the community may be inaccessible.

“We have to teach society that there are ways to adapt programs and include kids with physical and cognitive disabilities,” Dr. Rimmer said.

In addition to being socially isolated, youth with disabilities and obesity are more likely to have a host of secondary conditions such as high cholesterol, asthma, pressure ulcers, fatigue, depression, low self-esteem, high blood pressure and liver and gallbladder disease.

“My mission in life has been something called inclusion,” said Dr. Rimmer, noting that he has an adult daughter with autism who has been excluded from preschool and playdates since she was three. “Doctors need to understand that there are many associated consequences of obesity.”

Dr. Rimmer said that some tools that screen for weight issues don't identify problems in kids with certain kinds of disabilities. For example, using body mass index, which is a ratio of height to weight, doesn't work with children with paralysis.

Factors influencing the association between disability and obesity, he said, include: increased dietary intake; less physical activity; decreased fat-free body mass; lower resting metabolic rate, which is the rate at which you expend energy while at rest; and poorer heart function.

Despite the prevalence of obesity in children with disabilities, a disproportionate amount of U.S. government funding goes to research into weight management for children in general, Dr. Rimmer said.

He referenced a 2010 chart from the National Institutes of Health showing 116 federally-funded studies on obesity intervention for the general child population, compared to only eight studies targeted to children with disabilities. Dr. Rimmer noted that research on the general population typically excluded children with chronic medical conditions and genetic syndromes and those who don't walk or take medication. 

Dr. Rimmer said we need to learn from weight management programs that have been effective for the typical child population and adapt them for children with disabilities. “We need a systematic framework for developing guidelines, recommendations and adaptations.”

Dr. Rimmer spoke of a model that included convening an expert panel to assess whether existing guidelines target the disability population and creating focus groups where parents and youth with disabilities evaluate proposed adaptations. “We always find multiple holes in our recommendations after we go through the family focus groups,” he said.

Dr. Rimmer said it's generally not that difficult or costly to adapt programs, and that two common areas that need attention are training instructors on how to work with kids with disability and developing disability-friendly parent education materials.

Overall, adaptations should consider the built environment, such as the need for a ramp or access from a vehicle to a field; appropriate equipment; inclusion of all children in every game, sport or activity in and outside the class; and instruction for staff, for example, in how to communicate with a child with autism.

Dr. Rimmer said obesity is associated with carbohydrates and “our rates of obesity can come down demographically if can get refined carbohydrates, such as high fructose corn syrup, out of our diets.”

Inclusion is a right, he said, not a privilege.

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'I saw resilience,' summer research student says

Masha Koroleva is a fourth year psychology student at York University. This summer she was a research student in the Bloorview Research Institute in the Ward Family Summer Student Program. Masha’s own experience with illness that left her bedridden sparked her interest in working as a clinical psychologist with children who may be marginalized by disability or chronic
health conditions.

BLOOM: Tell us about your work in the Bloorview Research Institute?

Masha Koroleva: I worked on a number of research projects with scientist Amy McPherson and postdoctoral fellow Ian Patton. The main project was looking at child disability and obesity and developing something called the Healthy Body Scorecard. It aims to be a holistic, comprehensive, but easy to use health-screening tool that looks at healthy lifestyle factors and behaviours in children with and without disabilities.

BLOOM: Why is this tool needed?

Masha Koroleva: The trend in health screening is to rely on body mass index, which is a ratio of height to weight. But that isn’t a very holistic way of understanding what could be contributing to someone’s weight and health issues. It’s more important to look at behaviours, lifestyle, environmental factors and to understand that someone’s health is a constellation of different contributing factors.

BLOOM: What did your work involve?

Masha Koroleva: I analyzed a subsection of a survey targeted to doctors, nurses and dietitians across the country. We wanted to understand what professionals are using as health screening practices for children with disabilities, what are the gaps, and if we were to develop the Healthy Body Scorecard, what would these professionals like to see in it.

BLOOM: What did you find?

Masha Koroleva: It confirmed that doctors, nurses and dietitians are primarily relying on body mass index as a health screening tool. But we know there are problems with using it as a sole indicator of health because a lot of kids with disabilities have very different body compositions. They can’t be compared to typical growth charts. The survey participants recognized these measures were inappropriate, but they didn’t have anything else that was easy to use.

BLOOM: What did the doctors want in a new score card?

Masha Koroleva: They were interested in three domains: child health behaviours and child health attitudes—not just what do you do, but how do kids think about health and what they know about healthy eating—and family lifestyle.

BLOOM: Why is weight a particular issue for children with disabilities?

Masha Koroleva: Children with disabilities are less likely to participate in sports, more likely to have a sedentary lifestyle and more likely to eat high-calorie food. Sometimes there are also genetic factors.

BLOOM: What was it like working as a research student here?

Masha Koroleva: It was extremely exciting. Disability is something I’m very interested in. I’m very interested in people’s illness experiences and the idea of resilience and how people find themselves in very challenging circumstances and the ways they come up with to adapt to them.

I got a chance to work with some inpatients interviewing them about health-related programs like Busy Bodies. I got to write a paper on understanding current health practitioner screening practices based on our survey. At the Ward Family Day I talked about my research, made a poster, and gave a presentation.

There were a slew of lunch-and-learns that exposed me to different disciplines and to learning about different types of disability. That was eye-opening in understanding the uniqueness of every person’s challenge, and how for granted we take our own abilities.

BLOOM: What did you get from your work with children?

Masha Koroleva: Small, little interactions I had showed me the incredible power and resilience of people and the ability of every child to surprise you. It wasn’t necessarily this big heroic thing, but you’d see these little resiliences. I asked a boy in the spina bifida clinic what he was doing for the summer and even though it seemed that physically he would face a lot of challenges, he said he was taking a course in history and editing his own movies and soundtracks. I saw resilience in very simple, everyday actions.

BLOOM: What did you learn from parents?

Masha Koroleva: One of the interesting things parents said about Busy Bodies—which is a program focused on teaching kids about healthy lifestyles and nutrition and getting out to play sports and do new activities—is they all wished the program went on all summer, not just for one week of camp. They felt their children could only learn about healthy lifestyles if it became a given, something that was part of their routine everyday over time. They wished these programs were more available.

BLOOM: What was it like working at Holland Bloorview?

Masha Koroleva: I don’t think there’s any place like Bloorview that would have given me such a broad scope of what is possible and what exists. Everyone here seems so highly motivated and there’s a lot of love and community. It was great to be able to tap into that.

Also, just the way the physical space of the building is designed is very conducive to how it functions. The first thing you notice is the physical structure and that sets the tone for how the internal aspects of Bloorview work: the amount of light, how well thought-out and accessible the spaces are, the proportions of the rooms and the details of the space with so much green around us. I think that’s good for the soul and it helps the mind function.

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