Thursday, March 23, 2017

A new approach to autism

By Louise Kinross

Jessica Brian is a psychologist and clinician investigator at Holland Bloorview who co-leads our Autism Research Centre. She researches the earliest signs of autism in babies and develops and tests parent-led interventions for toddlers. She came to Holland Bloorview from SickKids in 2004, when the child development program moved here. When Jessica isn’t answering research questions, she does assessments with families who are here to see if their child has autism.

BLOOM: What led you into the field?

Jessica Brian: I’m one of those weird people that knew I wanted to be a psychologist as a teenager. I’ve always liked helping people and supporting people who I felt didn’t necessarily have a voice. I got interested in autism because I read about a young girl with autism who was considered to be quite low-functioning and almost non-verbal, but who had amazing artistic abilities. I saw her sketches and read about her and it captured my interest.

Soon after that I lived with a family for two or three summers and worked with their son over a few years. During that time he received a diagnosis of autism. I travelled with the family through having initial concerns about autism and having those concerns confirmed, to working really hard to help him develop language and build relationships.

He was such a fun kid to work with—smart, funny, playful—but we also had to help him get through big upsets and learn to be successful in school, at camp, and in the community. I saw how hard his parents worked to give him every opportunity to enrich his development, how far they had to stretch their resources, and the advocacy battles they had to engage in. I felt excited with every little gain he made. This was a very special experience that probably shaped the rest of my career.

BLOOM: What why did you decide to work with children as opposed to adults?


Jessica Brian:
Kids are much more fun than adults. They’re more creative and more playful. I really enjoy playing with kids. I also really enjoy working with families, and I think this is one of the best ways to support children.

BLOOM: Are you more passionate about your clinical or research role?


Jessica Brian: I think this is the perfect job because of the balance. The two pieces are aligned but they’re very different in terms of a typical day, and that keeps me on my toes. The two streams inform each other. The clinical gives me great questions and the research helps me to answer those questions.

BLOOM: What is a clinic day like?


Jessica Brian:
There really is no typical day. In clinic I would usually see a family I’ve never met before. I get the chart with some information about the history of the child and the parents’ primary concerns and reports from school or therapists, if the child is older. Then I meet with the family. I explain to them why they’re here. Sadly, it hasn’t always been explained well why they have been referred here. We have a lengthy discussion about the child’s early development and their concerns. Then I work with the child in a semi-structured play task for about an hour.


BLOOM: Do the parents observe the play?

Jessica Brian: If the child is young they sit in.

BLOOM: What ages of kids do you see?


Jessica Brian: The youngest child I’ve seen in clinic is nine months and the oldest is 17 years.

BLOOM: I thought you would mainly see preschoolers.


Jessica Brian:
That may be true as an organization. The average age of diagnosis is around four years. But I often see more complex kids who may have gone through their first 15 years with no diagnosis. Or sometimes they have an existing diagnosis—of anxiety disorder or ADHD and anxiety—but it doesn’t explain the whole picture for the family or the individual.

Some teenagers have done research on Asperger’s or high-functioning autism and approach their parents to say this captures me and I think it explains the challenges I’ve had. I also see kids who had a diagnosis of intellectual disability, and where autism hasn’t been considered.

Autism is becoming more well known. That means that more people hear about it and identify the signs that may fit with what they’re seeing in their child. I also see very young kids under the age of two. Because awareness of autism is out there, families are raising concerns with their doctors and children are being referred much earlier, and that’s a huge shift we’ve seen in the last five years.

BLOOM: You explained how you got interested in autism. What keeps you engaged?


Jessica Brian: Everything! It’s such an interesting condition because it manifests so differently in every child and the interaction between what I do clinically and in research keeps generating new ideas. It really does not get boring. I love that my research is intervention and I love that I get to do intervention with these kids and families and see gains being made. There is always a new challenge to grapple with and I see results which is super exciting.

BLOOM: What is most challenging about the work, perhaps in a not positive way?

Jessica Brian: I think balance is a problem. The truth is that it’s hard to manage both the clinical and research expectations.

The work can be emotionally draining. Families often have a very emotional reaction to the diagnosis. There are lots of families for whom this is hard news to hear, and you have to spend a lot of time helping them get through a very difficult time. That’s not always the case. Some families come in well prepared and they want the diagnosis to get services for their child.

People often say ‘Isn’t it depressing to always tell families that their child has developmental challenges?’ That is the reality for the child and family. The role I play is to help them interpret the news in a way that gives them hope and plans for the future. It’s potentially draining but I believe it’s really valuable.

BLOOM: Of course the way you deliver the news can empower families. But do you ever leave work feeling terrible after supporting a very distraught family?


Jessica Brian: I do. Absolutely.

BLOOM: Is there anything you do to help cope?


Jessica Brian: I try hard to remind other people to take care of themselves, but I don’t do a very good job of it myself. The borders between my work day and home day include a one hour plus commute where I listen to CBC radio. Half the time I’m not listening. I zone out and relive what happened during the day. Having that hour to do that really helps.

BLOOM: To decompress.

Jessica Brian: Yes, to decompress. I also use my husband as a sounding board if I think the system has been unfair to a family, because that happens a lot. He’s a behaviour analyst.

BLOOM: So he works with children with autism?

Jessica Brian:
Yes, that’s how we met. I did an internship in Princeton, New Jersey, and he was working at the school where I did my internship.

BLOOM: Oh, that’s so interesting.


Jessica Brian: We have lots to talk about.

BLOOM: Are there other things you do to help you cope on days that are emotionally difficult?


Jessica Brian:
Yes. I talk to my ‘people.’ My team here is really supportive. So I’ll burst into Evdokia’s office and use her as a sounding board, or speak to one of the nurses or research staff who knows the system and families well. I think it’s important to model for trainees that you shouldn’t have to ‘have it all together.’ And if you think you have it all together, you’re missing something.

With the kids who come to us, it’s not usually a clear-cut story in terms of ‘this is the answer.’ You need to think carefully about all of these pieces of evidence that contribute to the diagnosis and there’s often some level of uncertainty, and you need to share that too. Things aren’t always black or white, and if you think you’re right all the time, that’s ridiculous.

Particularly in working with my research families over time, I find most families are very open to hearing my own uncertainty. If I see a really young kid at 18 months and the picture isn’t totally clear, I don’t pretend I’m more confident than I am. I’ve learned over the years that you can collaborate with families. When there’s uncertainty, it becomes a partnership where families, who see their kid every day, can go away thinking about what else to watch for.

BLOOM: So they can be your eyes.

Jessica Brian:
Yes.

BLOOM: Can you describe your research a bit more?


Jessica Brian: The two arms go nicely together—what are the earliest signs that predict autism and how do you intervene? The intervention I focus on is called behavioural and developmental. I co-developed it with a colleague in Halifax. It’s a parent-mediated intervention where we teach parents to interact with their toddlers in ways that will enhance the toddler’s social communication and connectedness. I have amazing research staff who are trained to go into the family’s homes for 12 weeks.

BLOOM: Is this once a week?

Jessica Brian: It’s three times a week the first week, two times the second week and then once a week. They teach the parents ways to enhance their child’s directed or functional communication and to share positive emotion.

BLOOM: What's an example of how they may encourage a child to communicate more directly with them?

Jessica Brian: We ask them to observe their child and think very carefully about every activity they engage in and figure out what is it about the activity that the child likes. One child might like a pop-up toy because of the sound, whereas another child may like it because of the feeling of the buttons. Once a family has identified what the child really likes and the details, they’re coached to place a bit of a language demand to keep an interaction like that with a toy going.

So, if the child really likes the sound the pop-up makes, the parent might block the door from opening and say “pop,” and if the child is looking at the toy or the parent and makes a vocal attempt, the moment they make the attempt they open the door. They learn creative ways to be part of a game and to be really fun and playful.

BLOOM: What kind of changes are you seeing?

Jessica Brian:
We did a pilot study with 20 families in Halifax and Toronto. The children were about 12 to 32 months. The kids of the families who had the 12 weeks of coaching had gains in how much they respond when parents give them a verbal prompt, and in how much they made their own verbal initiations. This is a big deal in autism because kids are often very delayed in making social initiations.

BLOOM: Would this be a request?

Jessica Brian:
It's usually in the form of a request. The reason we work on requesting so much in autism is we know how often motivation is a challenge. We want to capitalize on the moment the kid is most motivated to get something. That's when we make them work the hardest. The other thing we saw in the pilot study was that parents were smiling more and kids were looking at their parents more. It's hard to smile when you're stressed out and your kid is not responding.

BLOOM: So these gains were compared to how the kids tested before the program?

Jessica Brian:
Yes, at baseline. We've also done a randomized control trial of 62 kids in Toronto and Halifax, and that paper is under review. The results look consistent with what we found in the pilot, except the gains are seen only in the treatment group.

However, even in the control group we gave families the option, after the intervention, of getting the Social ABCs, because we didn't feel comfortable not offering a family the intervention.

BLOOM: To what do you attribute the changes?


Jessica Brian: We're talking about a very short period of time, three months. We don't see change in some of the big standardized measures, like a change in IQ, but that can be a funny concept in two year olds.

We do see the kids achieve small communication and relationship goals that we feel are very important to build the foundation of social communication. If we can get those small changes over a small period of time, and have empowered the families to have a way to interact with their kids, we hope it will lead to larger gains over time.

BLOOM: We spoke last year about a similar study that was done in the U.K., and some unfortunate media coverage where the parents were referred to as 'super parents.'

Jessica Brian: Yes, I did about six interviews that day and every single interviewer used that term 'super parents.' I don't love that term. I think it puts undue pressure on those parents, and it's also not fair to families who can't take it on. There are families who can't do the training, for multiple reasons. Perhaps they have other kids with autism who need attention, or they have limited financial resources and can't take the time off work to learn the skills.

BLOOM: But isn't it also true that not every child will make significant gains, even when parents can do the training?

Jessica Brian:
That's right. They were group-based changes. The amount of change varies from one child to another. That's really important to remember. We did evaluate parents' delivery of the intervention. We videotaped them and coded their behaviour. We were able to see that almost every family attained a level of fidelity where they were delivering the program the way we wanted them to.

BLOOM: So it wasn't because of parent performance, or something a parent did or didn't do, that some kids didn't progress as much?

Jessica Brian: No. There are kids who will make minimal gains despite how hard a parent works. That is especially hard for families who work very hard and feel a tremendous investment. We have to be upfront and cautious in what we say this intervention can deliver, and assure parents that they're doing all they can.

Every kid made some gains that parents could celebrate, and we helped parents look at those gains and not overlook them. Our research staff are amazing. They will have that conversation with a family where they tell them there's nothing more you could or should be doing. What you're doing is a perfect fit for what your child needs.

Sometimes during the intervention a child who was initially showing some signs of autism is diagnosed with autism. Families may have hoped that the intervention will prevent their child from receiving the diagnosis, and those parents can feel deflated.

BLOOM: We've talked before about how some adults with autism feel there should be more focus on acceptance, and some oppose traditional behaviour therapy. How do you balance the idea of acceptance and the idea of cure?

Jessica Brian: One thing that's really helpful is I have worked with kids of all ages, as well as young adults. So I have a nice broad perspective of that developmental pathway to share with families. I'm aware of the advocacy efforts by adults, and and they're extremely important. With programs like the Social ABCs, we're not trying to fix or cure or change the autism.

One of the reviewers of our randomized trial asked how many children came in with autism and how many went out? We're not trying to reduce how many kids have autism. We're trying to boost the skill set they have. We're trying to help parents create an environment where the kid will be most successful and be able to thrive.

Using our knowledge about autism in babies, we want to help parents interact in ways that our research would suggest will optimize the learning environment. So it's about supporting the parents to create a good fit between the child and their environment.

Monday, March 20, 2017

Down syndrome ad makes light of 'special needs'


Tuesday is World Down Syndrome Day. Italy's CoorDown, a national group representing people with Down syndrome, released this humorous ad that questions the euphemism "special needs," suggesting people with Down syndrome merely have human needs. Go to www.notspecialneeds.com to learn more about the rationale for the campaign, which was produced by Publicis New York. Meow!

Thursday, March 16, 2017

Ending stigma is an inside job

By Louise Kinross

Yesterday I was interviewed by someone who’s writing a paper to support Holland Bloorview’s anti-stigma campaign.

I got to answer questions about what disability stigma is and how we might help eliminate it.

Years ago I came across this useful definition: Stigma is “the recognition of difference based on some distinguishing characteristic, or ‘mark’ and a consequent devaluing of the person...Stigmatized individuals are regarded as flawed, compromised and somehow less than fully human (
Dovidio, Major and Crocker, 2000).” 

People who are “marked” in this way are the target of prejudice, avoidance and rejection.

Of course what causes a person to be “marked” depends on what’s valued in a culture.

Those messages—and their flip side, a negative bias towards those who don’t measure up—are passed down from generation to generation.

The values that drive stigma are no mystery. They are not somehow “out there,” generated by other obviously “less enlightened or sophisticated people.” They are in each of us. They are what we learned, often implicitly and before we could understand, about who matters and who doesn’t.

These values played out in the elementary school I went to, without a single child with a disability. Absence speaks volumes about who is welcome.

They were in our neighbourhood where, as a young girl, I watched a teen with Down syndrome being dropped off from a sheltered workshop in a station wagon. He was the older brother of two of my friends, and he ran, head down, into the house. Why did he run with his head down? I didn’t know, but I knew something wasn’t right, something wasn’t fair.

The researcher who was interviewing me about stigma recalled how in Grade 3, a child with a disability joined her class, and everyone made fun of him. More of those cultural values, talking loud and clear.

Recently some members of Holland Bloorview’s children’s advisory council were interviewed about their lives. “There’s not one day where I don’t sit at lunch alone, because nobody wants to sit with me,” said one teen, who uses a wheelchair. What does that say about which bodies are valued in our culture, and which aren’t?

In 2017, people with intellectual and physical disabilities are routinely denied transplants. Here’s one recent story in the Washington Post about a young man with autism who inherited a heart condition from his father. His father died from it, and he will too, without a transplant. As the reporter notes: “...mentally disabled people are turned down for organ transplants often enough that their rights are a rapidly emerging ethical issue in this corner of medicine, where transplant teams have nearly full autonomy to make life-or-death decisions about who will receive scarce donor organs and who will be denied.”

We all know about the North American pandemic plans that exclude people with intellectual and mobility disabilities from accessing a ventilator when there’s a scarcity. Can anyone say “value judgment?”

In 2012, a French psychologist published a study that showed that adults who say they accept children with disabilities carry, at an unconscious level, negative stereotypes about them.

In the study, published in the journal PLOS One, 165 adults were asked to rate photos of children with Down syndrome and photos of typical children. Participants then did implicit association tests, which capture the strength with which certain groups of people are automatically—without conscious awareness—associated with positive or negative attributes.

Participants included 55 young adult students, 55 adults and 55 caregivers who work with people with intellectual disabilities. In each group—including the caregivers—photos of children with Down syndrome were automatically associated with a negative trait. This was found in people who had openly rated the photos of children with Down syndrome positively.

“These implicit associations are the result of social values…carried by our culture,” says lead investigator Claire Eneau Drapeau. “These are likely deeply embedded, and difficult to break. Nobody is immune, even people who have contact with the stigmatized group.”

What this means is that each of us carries these negative ideas about people with disabilities—and other marginalized groups—in our minds. How do we free ourselves from them?

Only through awareness, “can we choose to try to change them, to struggle,” Drapeau says.

The first step is to look inside and do your own inventory. Go back and excavate these messages. Things you’d never say out loud, which aren’t politically correct, but which you learned through what you saw and heard as a child.

Say them now, out loud. Talk about them with your family, colleagues and friends. Some of these ideas, about how our worth is linked to what we do and produce, are no different than the ones the German Nazis used during World War II to justify the genocide of disabled children and adults. They called them 
useless eaters.”

Before we adopted two of our children, my husband and I attended a workshop on interracial adoption. Part of it involved each parent listing, and talking about, the common stereotypes about the race of the child they were going to adopt. This was not a fun exercise, but it was a necessary one.

It struck me, during my conversation with the person researching disability stigma, that we don’t have to search outside ourselves to pinpoint or understand the prejudice associated with disability.

We don’t have to conduct elaborate research studies asking disabled people to tell us about the discrimination they face—as if we had no idea (and as if negative ideas about disability were foreign to us). 

The social values that fuel disability stigma are in each of us. Until we examine these ideas in our minds, how can we see how they influence us and break out of them? Expanding our concept of human value, beauty and diversity is not a passive act. It requires mental work.

And let’s not forget that stigma exists within the disability community itself, in countless ways in which certain kinds of disabilities are favoured over others. 

In the award-winning book Far From The Tree, Andrew Solomon writes about parents raising children so different from themselves they can appear alien: children with a variety of disabilities, musical prodigies, transgender children and children conceived in rape.

Ironically, while these groups all face stigma, during the writing of the book, their families attempted to distance themselves from each other.

The parents of child prodigies, Solomon writes, didn’t want to be included in a book with families of severely-disabled children. People with autism insisted that those with Down syndrome had lower intelligence than them. Deaf people didn’t want to be associated with people with schizophrenia.

So again, these cultural ideas are present in our minds. Examining them honestly, and taking up “the struggle” that the French researcher described to chip away at them, is a choice.

So too, is continuing to operate on negative biases we hold at an automatic, unconscious level.

Monday, March 13, 2017

A sister's story fuels this scientist

By Louise Kinross

Krissy Doyle-Thomas is a neuroscientist at Holland Bloorview. She's studying whether a brain-imaging tool that detects blood oxygen levels can identify pain in children with autism who use little or no speech. CBC profiled Krissy during Black History Month as one of 150 black women who have made a place in Canadian history for excellence in their field.

BLOOM: What led you into children’s rehab?

Krissy Doyle-Thomas:
For me it was out of a need. My younger sister Eddie-Marie was born at seven months and there were some complications: she wasn't getting all of the oxygen she needed. She was diagnosed with global developmental delay when she was very young.

We were a young immigrant family trying to navigate how to get help for her. We were in and out of SickKids for a very long time, meeting with specialists to address her medical needs in addition to trying to understand her global delay. The lack of answers my parents had about how to best support her really impacted our family. 


I was connected to the frustrations and stresses my parents were feeling and that started my desire to learn more, and to be someone who has that kind of information to share. I initially wanted to become a medical doctor. But then I went to school for psychology and I discovered the brain during one of my courses and I said 'This is what I want to do.'

BLOOM: Some people look at the brain and don't want anything to do with it!

Krissy Doyle-Thomas: I'm intrigued by the mystery of it. The fact that one organ controls everything we do. Of course we have other vital organs, like the heart. But the way our understanding of self and the way in which we operate sits in that one place, for me that is intriguing. I wanted to learn about the thing that makes me most like myself. And then when things go wrong, how can we address that? My passion is on the research side. I'm passionate about using the information I have to help find solutions for treatment, and also to educate people about the brain and the disorders I study.

BLOOM: How is your sister doing now?

Krissy Doyle-Thomas: She's fantastic. She's grown into a very independent, mature woman. She's married and has a little girl. She's got a knack for computers. My dad is an accountant and she supports his business. She knows how to handle data. She's developed a life that is who she wants to be. But growing up she had a hard time comparing herself to her sisters, who are all now senior executives in the business world, or me, with my PhD. When she let go of that, she really blossomed in her own way.

What I learned was how we view success is a personal thing, it's individualized. When my parents finally came to terms with the fact that Eddie doesn't need to fit into the same mould that their other daughters do, that allowed Eddie to be who she really is. To accept herself and the 'wonderfulness' that she is.


BLOOM: Can you describe your research?

Krissy Doyle-Thomas: We're using a new brain imaging tool that is portable and inexpensive and allows us to image the brain and see changes in blood flow in response to a task or state. When neurons are active they require oxygen and blood flow goes quickly to the active areas. As oxygen is released the signal changes and we can see where in the brain is active. 


We want to see if this can pick up the pain response in kids who have autism and are non-verbal. Our clinical partners see these kids in our psychopharmacology clinic. They're referred for aggression and irritability, but we don't really know what might be driving this behavioural response. Often times later on the clinicians discover medical conditions that are very painful. We're trying to create a tool that could be used in the clinic to help identify kids who may be experiencing pain and can't tell us.

BLOOM: What's challenging about the work?


Krissy Doyle-Thomas:
Understanding the cortical pain response in itself is a challenge, in the absence of emotion. How are we going to think about pain when physical and emotional pain may happen in tandem? A lot of times both need to be treated. We want to know if we can get a reliable signal that will warrant medical intervention.

BLOOM: Why did you choose to study autism?

Krissy Doyle-Thomas:
I really wanted to study global developmental delay, but when I was in school there weren't many researchers looking at that. I thought autism is another developmental disorder, if I start there, perhaps I can learn generalizable skills. Then when I'm an independent researcher, I can branch out. My end goal is to make my way back to studying global developmental delay.

BLOOM: What do you love about your research?


Krissy Doyle-Thomas:
I love that it provides answers to families, not definitive answers, but more information that helps families understand the brain and autism and will eventually be translated into care and treatment.

BLOOM: Autism is a controversial area because many autistic adults are opposed to the idea of cure and want others to value their way of thinking.


Krissy Doyle-Thomas: I agree with them. It goes back to how I feel about my sister. When a person figures out their identity, we embrace that. If someone wants to embrace their autism as who they are, we need to be respectful of that. And if someone wants to treat their autism, we have to respect that. It needs to be individualized.

BLOOM: You were talking about what you love about your job
.

Krissy Doyle-Thomas: I meet really cool kids and they're all so different and I appreciate that. I think diversity is very important. You meet all kinds of people with different abilities,
ethnic backgrounds, genders. Everyone brings something to the table. You learn so much about being a human being by walking in the halls here. That's what I love about being in an academic health centre. It helps me to have a new outlook on life—be who you are, and let others embrace that. 


BLOOM: There's a lot of literature on how having a sibling with a disability affects kids. While some is very positive, other research shows brothers and sisters can find the complexities that disability adds to a family to be challenging.


Krissy Doyle-Thomas:
I did find it challenging, yes. I always wanted to help, and when we couldn't find answers for my sister, I felt frustrated. She didn't always have the insight to know she was different, she just knew she was being bullied. My parents tried to put these protective parameters around her and she pushed against that. We didn't understand global developmental delay and what she could or couldn't do, and she wanted that independence. It was hard for her to understand why she couldn't do the things we were doing.

BLOOM: There's a group at York University doing research on the barriers facing immigrant moms of children with developmental disabilities. 
You mentioned you were an immigrant family. 

Krissy Doyle-Thomas:
We moved from Trinidad to Toronto when I was nine and my sister was two.

BLOOM: This York group held a workshop here and the diversity in the room was unbelievable. There were a number of support groups that I had never heard of: a group for Muslim moms raising children with disabilities and another for Chinese moms and another for Somali moms. There were also lots of service providers from outside Holland Bloorview. But there were only a handful of our staff there. They were talking about how challenging it is to get the services your child needs when you don't speak the language or don't understand how to advocate in this culture.


Krissy Doyle-Thomas: We spoke English, so that wasn't an issue for our family, it was more not knowing what the best treatment was and how to get it.

But there was a situation recently that opened my eyes in this area. When the CBC story on black women came out, we did a series of photoshoots in groups of about 30 to 50 women. We all shared about what we did, and when the others found out I was a neuroscientist, they had so many questions about their own kids and other family members. Some had been diagnosed with autism or had a concussion or something else. They kept saying 'You have the answers our community needs to hear.'

It made me realize we have to go out into the community, instead of saying 'come to us.' Keeping information within the four walls of my workplace is not what my community needs. Information can be received in a different way if the person giving it understands where you're coming from culturally. So the families say 'Okay, I get this, they're speaking my language, in more ways than one.'

BLOOM: Have your thoughts on disability changed since you came here?

Krissy Doyle-Thomas: Definitely. It's about appreciating people for who they are and not holding anyone up against any one measuring stick. It's about embracing the person and allowing that person to shine for who they are, without biases, or without them having to fit into a mould. This organization opened my eyes to that. It wasn't an aha moment. But the culture here has become my culture, and changed my outlook.


Krissy Doyle-Thomas's research is funded by Holland Bloorview's Centre for Innovation.

Thursday, March 9, 2017

'The goals of the family direct where we go'

By Louise Kinross

Erin Brandon is one of seven nurse practitioners at Holland Bloorview. She runs two clinics—one for families of children with cerebral palsy and complex medical needs and one for families of girls with Rett syndrome. Her appointments last up to two hours and include comprehensive medical assessments, community resource planning and troubleshooting and the emotional support that enables families to care for children with high needs at home, rather than in the hospital.

Erin came to Holland Bloorview in 2014 after spending a year in the complex care unit at SickKids Hospital. 
There’s something about these kids and their families that really struck me,’ Erin says. ‘There was an openness. I felt I was included as part of the family. I felt like I had an impact on their overall quality of life.’

BLOOM: How did you get into this field?

Erin Brandon: My mother always told me I should be a nurse. She said I was very caring and nursing would be an area that I would excel in. She had an inkling and she was absolutely right. At first I worked in general surgery at SickKids. Nursing brings an inclusiveness and an intimacy with the care you provide. I had also worked as an undergraduate at Sunnybrook in cardiology and met a couple of the nurse practitioners there. I was in awe of the dynamic they added to the health care team: the direct patient care, the clinical management, and the medical management. I felt that in the role of the nurse practitioner I could do a little bit extra for a family.

BLOOM: What is a typical day like?


Erin Brandon: There are never typical days! I am constantly learning new things from families and kids. If it’s a clinic day I usually have two appointments that can last up to two hours each. I do a comprehensive head-to-toe assessment and we try our best to cover every area of care. The goals of the family direct where we go. We talk about community resources, goals for functional abilities, medical concerns, family dynamics and long-term planning. These children are always going to need 24-hour support so you can’t just focus on the medical—it has to be everything. In-between assessments I get six to 20 calls a day from families in the community who need support. I provide triage to families if their child has a fever and isn’t eating and they’re trying to determine whether to take their child to emergency or a pediatrician. These families are very good at advocating for their children and they know their kids better than anyone, but at times providing a bit of reassurance and support to know they're doing the right thing helps to boost their confidence.

I work with schools, home care resources and other pediatricians to try to make the continuity of care better and break down barriers outside these walls.

BLOOM: I think every family could benefit from a nurse practitioner!

Erin Brandon: Any family can benefit from having the coordination and support, but as our resources are limited, we typically get involved when there are a lot of things falling through the cracks and they need extra support.

BLOOM: What’s challenging about this work?


Erin Brandon: One of the amazing things about Holland Bloorview is the opportunities to get involved—in research or program management or even in the strategic plan. Sometimes it’s a challenge not to get pulled in too many directions. I want to provide very good quality care to the families and that takes time. One common question that I get is 'Why didn't you become a physician?' I love being a nurse and being a nurse practitioner allows me to have the connection, flexibility and time to spend with families that I wouldn't have in another role. That helps me do the job that I do. There are so many pressures on these families, so many targets they need to look after and meet. I’m there to help them prioritize what is most important to them at this time, and what can wait.

BLOOM: And to give them permission to wait. I was just reading an article about the invisible work of patients—about how we expect so much from families, and then when they don’t get some of the tasks done, we tend to say they’re not following through or not being compliant.


Erin Brandon:
Nursing has helped me so much in a medical world. When a family’s world has medical complexity, we’re very good at making work and identifying problems that need to be fixed. But as nurses, we’ve always been taught that the client and family is at the centre of everything. They’re the expert at what they want in their life. Listening to families helps to direct the medical piece, so that it fits into their life rather than standing outside of it.

BLOOM: Yes, so the family isn’t shoved into an idea of what other people think is ideal for them.


Erin Brandon: I can give a solution or identify next steps, but if that doesn’t fit with a family’s goals, why are we taking these steps? A good portion of what I do is taking this guilt away from families. There’s so much pressure on them. It needs to be about what they need, rather than what my recommendations are.

BLOOM: How do you manage the emotions that come with your job?


Erin Brandon: This is the most humbling role I’ve ever had, because of how open families are with me. There are times when you take it home, I don’t know how you couldn’t. There are days when I cry with families. But I cry in the losses and the successes. These families include me as an extension of their family, which is the biggest honour. And the successes, no matter how big or small, always outweigh the loss for me.

I also have a very supportive team here, which includes physicians, therapists, nurses, nurse practitioners and managers. I can talk to them to work things through when I need to.

BLOOM: So you talk to one of them if you’re having a difficult situation with a family?

Erin Brandon: You have to. I think there are things that happen with children with medical complexity that no one can anticipate.

BLOOM: What do you love about your job?

Erin Brandon: It’s so hard to describe. It’s the kids. And the families. I’ve had conversations in clinic that I don’t think these families open up to other people about. And to have that connection with a family is the most rewarding thing you can ever have. When I was in general surgery, a family may come in and go home, and you may not see them again. In this work, to see the growth of a family and a child over their life span is an incredible gift. That’s one of the things that drew me here and to complex care.

BLOOM: What have you learned from families?

Erin Brandon: One of the biggest things I’ve learned is that everyone is different, no matter what their diagnosis. The other thing every single family has taught me is that no matter whether they’re flailing or they have it all pulled together, there is a huge amount of stress that they come with every day, just to walk out the door.

BLOOM: Have you changed?


Erin Brandon:
I was very medically focused when I came here. I feel that families have opened me up to so many other possibilities. They’ve taught me what is important to them and that the medical part is not always the most important part of their lives. Perhaps the parent just needs to talk about something that’s happened, because to them, they can’t get past it until they’ve talked about it. For me to be in an environment where I have that flexibility to support families in this way is fabulous. I also have the option of saying ‘We have a lot to discuss today, maybe we should also meet again?’

BLOOM: If you could change one thing in health care, what would it be?

Erin Brandon: We’ve got so many great organizations in Toronto but they all have different systems and set-ups. We need to break down those walls. Why do we need a medical record at every single facility? Why not just one system across facilities, so everyone is connected? One thing that frustrates me is the money comes from the same spot—the government. We’ve created this. We could make it so much easier for families if we improved our connections—even between SickKids to here and other [children’s treatment networks].

Friday, March 3, 2017

'It's not just for Joey, it's for a better world'

By Louise Kinross

British director Stephen Unwin is set to direct his new play All Our Children—about a German clinic in 1941 that sends disabled children to their death as part of the Nazis' killing program. BLOOM interviewed Stephen in 2013 about his role directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. Both plays strike close to home because Stephen’s son Joey, 20, has intractable epilepsy, severe learning disabilities and no speech. All Our Children will run April 26 to June 3 at the Jermyn St. Theatre in London. Stephen recently became chair of KIDS, a British charity that provides services to young people with disabilities from birth to age 25. BLOOM spoke to Stephen about All Our Children.

BLOOM: Why did you decide to write this play?


Stephen Unwin: My mom is German Jewish. She was born Jewish in Nazi Germany and came to Britain at age three. So at the back of my mind the Holocaust was always something in the environment. I read a huge number of books about that period and how that catastrophe happened. I was brought up Catholic in Britain, and although I’m an atheist who believes in science, I do have some respect for what the best of the religion Catholicism does when it tries to help the vulnerable. I was reading a book about the Third Reich and I came across something about a bishop who had opposed the murder of the disabled. It struck a chord in me. I thought this is so interesting because it brought together my German Jewish background, my Catholic background and the issues I face with my son Joey.


BLOOM: What is the play about?


Stephen Unwin: It’s set in a pediatric clinic for disabled children in 1941. Before the Nazis, the clinic tried to house and help the profoundly disabled. With the implementation of the eugenics program,  a number of the kids were taken each week by bus to Hadamar, one of the killing centres.


The clinic is run by a pediatrician in his 50s who’s dealing with a world gone completely mad. He thinks he’s a doctor not a murderer. He has a maid who’s a Catholic with three children. She doesn’t know the clinic children are being murdered, but she’s glad her kids are ‘normal.’ 


There’s a Nazi administrator who’s 22, who views disabled people as disgusting, and the mother of one of the disabled children. The mother turns up in Act 1 to thank the doctor for looking after her child so well, and then in Act 2 comes back with a letter saying her child has died. She’s the emotional punch of the play. She’s feeling her way to realizing what's happening.


The other character was a real person, the Catholic Bishop of Münster, Clemens August Graf von Galen. He belonged to one of the oldest aristocratic families in Germany. He was one of the real heroes in the battle for the rights of the disabled. He impressively comes up with sermons in which he says ‘You cannot kill the most vulnerable. These people are our brothers and sisters.’ 

At the end, the mother discovers what's happening and she says ‘They are all our children, there’s nothing special, they’re just children,’ which is what I think. We have to move beyond the normal and abnormal characterization. And what I really feel is that the religious come up with an answer of sorts, and those of us who aren’t religious need to find our own version of that answer. This is a philosophical play talking about how do we secure our moral foundations?

The main defense of the Nazis was ‘these people are too expensive.’ I sometimes find myself talking to myself about Joey, and yes, he’s really expensive, and will never earn any money or pay tax, but that’s, I guess, why you and I pay tax. So that when people have a disability like Joey, or develop dementia or lung cancer, we have a responsibility to these people with extreme vulnerability.


The play is quite particular, in that it’s got a bit of atmosphere about that terrible, dark place, but I actually hope and want it to speak to now. Not to say that disabled kids are being treated like that, they’re not. It’s a different set of issues, but some of the thinking is parallel. I actually touch on the philosopher Peter Singer’s writing, his idea that my dog has as many abilities as one of your profoundly disabled children, so why do we give the child rights when we don’t give the dog rights? And some of the Nazi thinking resonates with what we’re hearing today in the U.K. about disabled people being scroungers, that they’re not really disabled.


BLOOM: What is it like to be recreating a time when your own child would have been killed because of his disability?


Stephen Unwin: People who know Joey will recognize some of Joey in the child, Stephan, in the play. I wanted to bring a kind of reality to it. There’s a moment when the doctor signs off on 30 kids being taken away to be killed, and he looks at each piece of paper with a photograph and says ‘yes,’ tick, tick, tick, and then ‘no, he’s not ready yet.’ I want an audience to remember and feel that this is an individual, not a category, and to do that I need to think about my son Joey in that situation.


The Nazis used to talk about how these were mercy killings, and that anyway, the child wouldn’t know what was happening. It’s a terrible truth to say this, but if Joey was put into one of those buses and taken off he wouldn’t know what was happening, and he wouldn’t even be scared, because he likes buses. That’s the truth, and we have to bear witness to this extreme vulnerability and we absolutely have a responsibility to these people.


I got fed up with the narrative in disability, and in disability dramas like The Curious Incident of the Dog in the Night-Time, of ‘don’t worry, these people are mathematical geniuses.’ That narrative of consolation has dangers, and is as dangerous as a narrative of catastrophe. These are real people. Joey isn’t a metaphor. The disabled were taken as a metaphor for everything Germany hated – weakness, vulnerability and ‘ugliness’—and it has to be done away with.


I’ll probably cry a lot in rehearsals, but I’ve been working in the theatre for 35 years, so it’s not like someone doing it for the first time.


BLOOM: I know that sometimes I find it emotionally exhausting to write about some of the popular thinking about disability. I just wrote a piece about Peter Singer’s latest writing.


Stephen Unwin: It is emotionally exhausting. But the way my brain works, it’s part of clarifying what I think. I’m trying to understand what the issues are, trying to work it all out. And working it carefully out is weirdly, for me, part of recognizing and accepting and acknowledging the challenges. I live a life full of books and words and ideas, and then there’s Joey, who isn’t books and words and ideas. And I want to find a way of bringing those two things together. I think it’s our duty. I feel Joey needs a spokesman and in all the complicated ways I exist, I feel a real duty to be his spokesman. And it’s not just for Joey, it’s for the other kids like Joey. Some of those kids have parents who don’t have English as a first language. It’s not just for Joey, it’s for a better world.

Monday, February 27, 2017

I'm not okay with disability hate being confused with science

By Louise Kinross

I didn't want to write about this. But I couldn’t let these comments (scroll to the bottom of this page for the full passage) about people with Down syndrome in an academic journal produced at Oxford go unchallenged.

We’re all familiar with Peter Singer, the philosopher at Princeton University who believes human value is earned by what you do intellectually and physically—not inherent.

In 2009, Singer wrote a piece in The New York Times Magazine suggesting that rationing health care based on disability is just. In it, he asked how “most people” would rate life with quadriplegia, to life without? Of course these “most people” would have no firsthand experience with paralysis (personally or in their family), only common cultural stigmas to draw on.

Would the average person have a hard time deciding whether they’re prefer five years of able-bodied life or 10 years with paralysis? If so, he says, what they’re really saying is that life with quadriplegia is half as good as non-disabled life. “If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.”

It doesn’t matter what science tells us about the lived experience of people with quadriplegia and other disabilities. According to Singer, it only matters how the masses “imagine” it to be.

In fact, people who have no control of their body and can’t speak are using computer brain interfaces to tell scientists they are generally happy with their lives. Last month, BLOOM asked neuroscientist Niels Birbaumer, lead investigator of such a groundbreaking study, if the results suggest that assumptions that non-disabled people make about life with severe disability being “not worth living” were wrong. “Yes,” he wrote back. “They are utterly wrong. Many papers prove this.”

Harvard psychologist Daniel Gilbert helps explain the paradox in Stumbling on Happiness by describing common blind spots in how we imagine things. These include a lack of empathy that would allow us to imagine an experience different than our own, and a tendency to overestimate the negative impact of an event and underestimate our resilience. This explains a study that showed sighted people will pay more to avoid going blind than blind people will pay to regain their sight. It also explains why “most people,” like Singer, assume they couldn’t be paralyzed and happy, even though research shows the opposite.

Last November, in a CBC interview that included his views on infant euthanasia, Singer said that parents should not be “stuck with having to look after a really severely disabled child.” He said that a child with severe disability can rob parents and siblings of happiness, and that a future child from the same parents might have a better life. 
It's a question of one life or a different life,” he said. But he doesn't talk about the actual research on families raising children with disabilities and their siblings, the real challenges and rewards. Why let science muddy the waters?


Which brings us to Twenty Questions. In this piece in the December issue of The Journal of Practical Ethics, Singer answers questions posed by the editors. In one, he shares his view on what he imagines parenting a child with intellectual disability would be like.

Singer tells us that in this hypothetical scenario, which involves a child with Down syndrome, it's not his child’s happiness that he’s concerned about. It's his own as a parent. Singer says he imagines his happiness as a parent would be diminished if his child wasn't his intellectual equal. And it isn’t just his child’s low IQ that would quash Singer’s parenting gig. Having a child who wouldn’t have children of his own or be “fully independent” as an adult would be a killjoy, Singer writes.

(Um, perhaps the editors of The Journal of Practical Ethics should do a Google search on people with Down syndrome who are independent and do have children? No, not all, but some. And, oops—Singer likens Down syndrome to profound intellectual disability further along in his answer, when he compares the life of a person with profound intellectual disability to a pig. This is to suggest that the pig's brain makes its life more valuable (to whom? Other pigs? Most parents don't abandon their child based on a lower IQ. Either Singer doesn't know that Down syndrome is not usually associated with profound intellectual disability, or he simply copied and pasted this part of his answer from thoughts he's written previously about people with profound intellectual disability). Where was the fact checking on this piece? And, is “normal” academic language? Singer never defines what he means when he refers to a “normal” human being, the kind of child he so desperately wants. But I digress!)

Based on the reduced happiness that raising a child with Down syndrome might cause Singer, he writes that it’s ethical for him to place the child for adoption. This would enable him and his wife to have another child “who would be very unlikely to have Down syndrome,” which means they would have the child “they want to have.” 

It’s at this point, as the parent of four children—two biological, including one who has multiple disabilities, and two who are adopted—that I started to laugh. Is that seriously what Singer thinks parenting is about? Getting the child you “want to have?” Um, doesn’t that sound like something a teenager would say? I wonder what other human characteristics, separate from Down syndrome, might place a child on Singer's “not wanted” list? How, exactly, does this qualify as scholarly, and not hate? Should we expect, in The Journal of Practical Ethics, to read Singer's thoughts on why he wouldn't want to raise children who are marginalized and discriminated against in our culture for other reasons?

Call me academically stupid, but many people (and we know Singer is very concerned about the views of “most people”), would say that parenting is about learning to love a child unconditionally. Further, most parents recognize that it’s often through parenting a child who is NOT a “mini-me” that they most grow and develop as a person. 
This is why research finds that parents of kids who are disabled and chronically ill report post-traumatic growth—not just stress. The world sure is a complex place, isn't it? And we parents sure are complex beings, aren't we?

To reiterate, Singer believes it’s ethical to place a child for adoption because it’s not the child he wanted to have, which means it will make his life less happy. How does Singer propose we handle parenting children who, over a lifespan, develop problems that aren’t what parents imagined we “[wanted] to have?” You know, those children who develop serious mental health problems or who are diagnosed with cancer or a learning disability, or who are the victims of assault, or who are injured in a catastrophic accident?

Forget about children. What about aging parents who are no longer able to be “fully independent?” How do we solve the problem of the reduced happiness that these seniors pose for their children, partners or other family members?

But wait. Does the happiness of the parent outweigh the happiness of the child? How can you even separate one from the other? Is happiness in families a matter of simple emotional bookkeeping? Does the happiness of the able family member outweigh the happiness of the family member who becomes disabled or ill? Should we “adopt out” people later in life, when their dependence begins to crimp our style? 


Singer represents a frightening world defined by reason and devoid of the empathy and connection that I believe is what truly makes a person human. I’d love to hear about what it was like to grow up calling him “Dad.”

In the meantime, allowing Singer to spout his hatred of people with disability under the guise of academic knowledge is not okay.
A bioethicist friend tells me that The Journal of Practical Ethics is a “big league” ethics journal. If so, why doesn't it correct the inaccuracies and generalizations Singer makes about the lives of people with Down syndrome and their families? 


Some final thoughts. Singer's ethical math depends on a few things. 

One is that Singer and his wife's future child, after they place the first one for adoption, is not born with disabilities. Why is that taken as a given? At age 30, I gave birth to a child with a spontaneous, rare genetic condition, meaning this genetic change happened at conception and is not something my husband and I carry. Is there any reason why something similarly random might not happen to Singer and his wife the second time around? If their second child is born with disabilities, will they be adopting out that child as well? 

Second, Singer assumes in his scenario that there are couples who are happy to adopt his child with Down syndrome. As the parent of two adopted children, I'm sorry to inform him that there are often NOT families available to adopt children, whether they have Down syndrome or not. It is telling that Singer assumes that only “couples who are unable to have their own children” would adopt a child with a disability. In fact, some parents who are able to have children choose to adopt a child with a disability, sometimes more than one. We have written about a number of these families in BLOOM.

And finally, does Singer's wife have any influence? What if his wife, after giving birth to a child with Down syndrome, decides this child is the child she wants to have. What if she refuses to place the child for adoption? Will Singer then look for a second wife? Are all family members disposable in Singer's world?

Here is the passage from The Journal of Practical Ethics:

Q: You said in an interview with Andrew Denton that if you and your wife had a child with Down syndrome, you would adopt the baby out. Could you explain the ethics of this and isn’t it a selfish decision? Could you elaborate on your views about disability, in particular why you think a life with disability is of less value and what you think the implications of that are?
Singer: I was assuming that there are other couples who are unable to have their own child, and who would be happy to adopt a child with Down syndrome. If that is the situation, I don’t see why it is selfish to enable a couple to have a child they want to have, and for my wife and myself to conceive another child, who would be very unlikely to have Down syndrome, and so would give us the child we want to have. For me, the knowledge that my child would not be likely to develop into a person whom I could treat as an equal, in every sense of the word, who would never be able to have children of his or her own, who I could not expect to grow up to be a fully independent adult, and with whom I could expect to have conversations about only a limited range of topics would greatly reduce my joy in raising my child and watching him or her develop.
“Disability” is a very broad term, and I would not say that, in general, “a life with disability” is of less value than one without disability. Much will depend on the nature of the disability. But let’s turn the question around, and ask why someone would deny that the life of a profoundly intellectually disabled human being is of less value than the life of a normal human being. Most people think that the life of a dog or a pig is of less value than the life of a normal human being. On what basis, then, could they hold that the life of a profoundly intellectually disabled human being with intellectual capacities inferior to those of a dog or a pig is of equal value to the life of a normal human being? This sounds like speciesism to me, and as I said earlier, I have yet to see a plausible defence of speciesism. After looking for more than forty years, I doubt that there is one.