Thursday, January 31, 2019

Women with autism at higher risk for suicide, study finds

By Louise Kinross

Utah women with autism were over three times more likely to die by suicide than their peers without autism between 2013 and 2017, according to the first American population-based study on suicidality in autism. 

The study, published in Autism Research this month, used surveillance data in Utah from 1998 to 2017. The researchers broke the study into four periods of five years. During the first three periods, the risk of suicide between autistic and non-autistic people was similar. But from 2013 to 2017, death by suicide in the autism population was significantly higher than in the general population, and this increase was driven by suicide in females.

BLOOM interviewed lead author Anne Kirby, assistant professor in occupational and recreational therapies at the University of Utah.

BLOOM: Why was there a need for this study?

Anne Kirby: There's been a lot of talk lately that people with an autism diagnosis might be at higher risk for suicide, but most of the research has used clinical samples of people who have come in to a certain clinic, or convenience samples. We didn't have any good population-based research, except for one study done in Sweden a few years ago. 

The Swedish study looked at all causes of mortality in autism, and found people who had an autism diagnosis were more likely to die from suicide than others. We wanted to look at that, and expand that population-based research in the United States.

BLOOM: Were you surprised by your findings?

Anne Kirby: In general, yes. Because autism is less diagnosed in females, and suicide is known to be a less common cause of death for females, we wouldn't have had any reason to believe we would find the higher risk in women. It was consistent with what was seen in the Swedish study. 

BLOOM: I think it's important to emphasize that even though there was an increased risk, the actual number of deaths was small. From 2013 to 2017, seven women with autism died by suicide.

Anne Kirby: Suicide is a rare occurrence, so even though the risk is three times higher, it's still rare. The conventional wisdom is that females are much less likely to die from suicide, but with females with autism, we found that's not the case. 

One of the things that's interesting to me is that for a long time, even mental-health clinicians who worked with this population didn't think autistic people would consider suicide.

BLOOM: Why's that?

Anne Kirby: It's hard to say exactly, but it's possibly related to a general belief about suicide. It's often thought that there are social influences, but there's a long-held misconception that people on the autism spectrum aren't affected by their social surroundings. 

In the past, we weren't as worried about loneliness and the influence of bullying. Certainly, clinicians and the broader research community have really clued into the fact that those are real concerns autistic people have.

So they may face some of the same social influences as the general population, but there's an array of other reasons why they may experience suicidalitybiological, neurological, genetic, social. Employment is something many adults with autism struggle with.

BLOOM: What might be the factors that contribute to suicide in women with autism?

Anne Kirby: That's an area that needs a lot more research. There was one study that talked about how camouflaging, or masking or hiding, your symptoms, and trying to fit in, was more associated with suicidality. It also suggested that females might be more likely to camouflage, and to be better at it. So they may have added pressures around fitting in and identity.

The other thing I've been thinking about is how there's a growing awareness of autistic adults and self-advocates. But still, our stereotype is very male. So females may feel especially isolated, even from the autistic community.

BLOOM: Were any of the deaths of women with autism in Utah medically assisted deaths? I know a study in the Netherlands looked at cases of medically assisted suicide that included people with autism.

Anne Kirby: To my knowledge, no. It's illegal here in Utah.

BLOOM: Are there studies looking at the effectiveness of treatments for depression and anxiety, specifically in people with autism?

Anne Kirby: The research on mental health in conditions like autism right now is scant. Most of the research out there is descriptive, looking at the prevalence of conditions, and they're highly prevalent. To my knowledge, there's not much research looking specifically at interventions.

Before we even get to treatment, there's a lot of concern, and hopefully some research being done, on whether or not our evaluation tools are appropriate for identifying depression, suicidality and anxiety in people with autism. The measures we use haven't been validated for people on the spectrum.

I don't think we have a good sense of whether the interventions that have been shown to be successful with other groups are appropriate for this population, or if they need to be tailored. This is a huge priority area for many autistic adults. I hear, repeatedly, that adults with autism have trouble finding mental-health providers who are really familiar with autism.

BLOOM: What are the next steps for your research?

Anne Kirby: In the paper we just published, we had some demographic data about the group that had autism and died by suicide. We're hoping to get medical billing data, so we can have a sense of what co-occurring conditions they had, and what might be potential risk factors, or warning signs, from a co-occurring condition standpoint. We're eager to do that.

We're also eager to look at data on suicide attempts as well. To get a sense of whether people with autism are attempting suicide more often than their peers, or if the difference we saw is really in suicide deaths.

Read our BLOOM story about Sweden's 2016 population-based study on suicide in people with autism. 

Monday, January 28, 2019

While in hospital, Fiaz creates bright, bold, energetic art

By Louise Kinross

Fiaz Rahman has had a rough six months. The 18-year-old developed a pressure injury in August that prevented him from going to school for months. Just before Christmas he was hospitalized at Holland Bloorview. "More than physically, it was emotionally painful, because I wasn't in control of it," he says. "I didn't intend for it to happen. It ruined my lifestyle. I couldn't enjoy my summer or go to school. It was difficult for my parents, and I couldn't hang out with friends. I felt trapped, isolated and lonely." While in hospital, Fiaz has pursued his love of art, and he has dozens of bright, bold, energetic pieces on display in his room. We spoke about his stay here.

BLOOM: How has art helped you cope while in hospital?

Fiaz Rahman: I've always loved art. I love media and I'm a poet. I love movies and colours and imagination. They're all a big part of my inspiration. Doing art here showed me a lot of things I didn't know I had inside me. It feels like I'm creating content for the world. You know how artists leave their mark and their legacy, and make a name for themselves?

I like colours
constructing colours, colliding colours, obstructing colours. I want to create art as a business in the future, as a career. I want to go to the Ontario College of Art and Design. I like trying new things, and seeing what works, and what doesn't work, for me. I like making something better.

BLOOM: Where did you do your art while here?

Fiaz Rahman: I did some of it in recreation and some of it by myself in my room.

BLOOM: I noticed you have some art gallery tickets on your windowsill.

Fiaz Rahman: Dr. Flap, the clown, printed those up. I've tried to invite everyone and anyone.

BLOOM: What has been the hardest part of being in hospital?

Fiaz Rahman: I love this place. It's an amazing place. People need each other and we need to take care of each other. Kindness goes a long way. I've had a lot of support and I'm happy mentally and emotionally here. I still have my pressure ulcer, but it's healing and I'm so grateful. It's not as deep as it was. 

BLOOM: Do you have any advice for our staff?

Fiaz Rahman: It's important for staff to understand where a child is coming from. Don't judge them. Understand and have empathy for them. You need to connect to the kids.

BLOOM: What advice would you give a child or teen who was coming to stay here?

Fiaz Rahman: It's such a great facility. Speak to people here, and let them help you. Create new friends. Surround yourself with a positive environment. Try to find out what you're good at and explore your passions. It's going to be tough, so you have to be strong and patient.

Thursday, January 24, 2019

'I like a nurse who's caring, sometimes funny, always positive'

By Louise Kinross

Justin Chau is an 11-year-old inpatient at Holland Bloorview. He's writing a story about his life following a surgery to remove a brain tumour. He loves orange, because it’s the colour of flames, drawing abstract art and camping. We spoke about his story and experiences in hospital.

BLOOM: You wrote that when you woke up after your 10-hour surgery, everything felt fake. What do you mean?

Justin Chau:
I wasn’t aware of where I was, because it didn’t feel real. I wasn’t aware of where I was in space. I felt different in my body. I didn’t feel like my normal self. I felt like it was all a dream in my head.

BLOOM: In your story, you say you’ve been able to sleep better since you came to Holland Bloorview. Is that because it’s quieter here?

Justin Chau:
No. It’s because I do lots of therapy and talk to lots of people and I’ve made friends. I’m not on any medication, I can walk and do stuff better, and I’m independent in my room. Because I’ve been here for longer, I get to know people better. I feel like I’m not alone, because everyone is supporting me.

BLOOM: You wrote about one friend you made here, who was a baby.

Justin Chau:
Yes. My mom made friends with his mom, and one day I got to babysit him for a couple of minutes in my room, while our moms went to do something. He would laugh at me while I do stuff. After that his mom trusted me, so I continued to babysit him. They call us soul brothers, because we both have a scar on the same side of our head. When it was his last night here, I decided to go and play with him. My mom and his mom exchanged numbers so we can talk to each other and meet up in the summer. This is just the beginning of our friendship.

BLOOM: You mention a big list of nurses that you like, and say they’ve inspired you to consider nursing as a career. What qualities are important in a nurse?

Justin Chau:
I think a nurse that always watches over you and that comes in at the right time to check if you need help. They should know my feeding schedule. They should teach me and guide me. Since I want to be a nurse, they taught me to do my own feeds.

I like a nurse who's caring, sometimes funny, always positive.

BLOOM: Why did you decide to write a story about your experiences?

Justin Chau:
My social worker, Anna Marie, asked me if I wanted to create a timeline of how far I’ve come, and the progress I’ve made. I was like ‘That’s a good idea, can I write a story?’ It’s important because I want to know how much I’ve been improving, and how quickly and well my body has recovered.

BLOOM: Is there anything we can do better here at Holland Bloorview?

Justin Chau:
I like almost everything here. I think the therapists do a really good job of pushing kids to work harder, so that they improve, but not so hard that we’re exhausted. They push us so that we feel confident and strong.

I think this hospital is one of the best that I’ve seen. They have recreation in case you’re bored, and there are lots of things to do. You get a nice room with a TV, and the nurses are always caring for you. And you can go to school here. I have fun going to school.

Wednesday, January 23, 2019

Doctors need to get comfortable with intellectual disability

By Louise Kinross

Global developmental delay (GDD) isn't a long-term diagnosis, write two doctors
 in a commentary piece this week in The Journal of Pediatrics. So why does it appear so frequently in medical charts across a person's lifetime?

"Disability becomes the Lord Voldemort of clinical medicinesomething so terrible it ought not to be named," write Dr. Eyal Cohen, a pediatrician at SickKids in Toronto, and Dr. Amy Houtrow, chief of pediatric rehab medicine services at Children's Hospital of Pittsburgh.

The doctors note that clinicians contribute to the stigma of intellectual disability by continuing to use the label of GDD. They attribute this word choice to doctors' unconscious bias against people with intellectual disability, to not wanting to upset parents, or to worrying that they don't have adequate time to explain the disability. "The unwillingness to name intellectual disability is widespread in medicine," they say.

They note that the word delay often causes confusion in parents, who assume it means their child will eventually catch up to peers.

Doctors need to be precise in using the term intellectual disability. "Disability is not a disaster," they write. "People with disabilities live with the realities of their disabilities every day, and our inability to acknowledge this does not stop them from being real; it just stops us from providing the best care possible."

The authors offer a suggested dialogue between a doctor and parents, who say they didn't realize their child's problems would be permanent.

It includes saying "I would be happy to talk more with you about the disabilities that he has...I know having these conversations can be stressful and sad."

Something that is missing for me, as a parent of a child with disabilities, is the message that my child has value. It's one thing to tell parents that disability is not a disaster, it's another to encourage parents to consider what it is that gives humans, and their child, value. I've written about this here: Why parents get hooked on 'normal'.

But I wonder how many doctors have truly had the time to sit and ponder human worth, either as a medical student or as a clinician? Is our value tied only to what we do? Is it something to be earned through how we perform? Is it our paycheque, our IQ score, or how well we fit Western
 conceptions of beauty and athleticism?

If we can't measure up, does our value as a human being plummet? 

Because if you haven't actually wrestled with these questions, I think it will be hard to convey to parents that their child with an intellectual disability has value. 

It's not something you can fake. 

It reminds me of an interview we did with the author of a study that looked at 68 transcripts of conversations between doctors and parents discussing life and death medical decisions for their children.

Lead investigator Dr. Tessie October, who is a pediatric intensive-care doctor at Children's National hospital in Washington, D.C. said: "We don't think of how we talk with families as being a procedure, in the same way we think of putting in a central line or a breathing tube." As a result, it's not taught and evaluated in the same way in medical school.

I think that needs to change, whether the topic is describing high-stakes medical decisions to parents, or telling them that their child has an intellectual disability.

Because that kind of medical training benefits the emotional health of families and doctors alike.

Friday, January 18, 2019

What works in children's rehab, and why, is researcher's passion

By Louise Kinross

De-Lawrence Lamptey has a PhD in rehabilitation science and a master’s degree in clinical psychology. He has right-sided weakness related to cerebral palsy and grew up in Ghana. “When I was growing up I was less aware of my disabilities than I am now,” he says. “I was born with a disability, but I was never raised as a person with a disability.” De-Lawrence is a postdoctoral fellow doing research in inclusion and participation at Holland Bloorview with senior scientist Gillian King.

BLOOM: How did you get into this field?

De-Lawrence Lamptey:
I was born with a disability. I have a form of CP that affects my right arm and leg. But I grew up in Ghana feeling I was just as normal as any typically developing child.

BLOOM: Doesn’t that culture hold negative attitudes about disability?

De-Lawrence Lamptey:
Yes. They attach superstitious beliefs to disability, so they believe it’s caused by a sin or a curse. I was teased, but it didn’t affect my goals in life, or the way I perceived myself. My identity was formed in my family, as opposed to the culture around me.

A second barrier I faced was that I’m left-handed, and in Ghana using your left hand with people in your interactions is culturally considered a sign of disrespect. So if I raised my left hand to answer questions in school, some teachers wouldn’t take my answer because they weren’t aware I was disabled.

In the culture, if you want to use your left hand in interactions you're expected to apologize beforehand, in order not to make people feel disrespected. Can you imagine if I had to say ‘I’m sorry I used my left hand’ to everyone I interacted with on a daily basis? I didn’t do that, so many people thought I was being disrespectful, especially those who weren't immediately aware that I had a disability.

I give a lot of credit to my mom. I was allowed to do everything, and I wasn’t overprotected. I wanted to do what I saw everyone else doing, so I learned how to ride a bike and to play the bass guitar, the drums and the piano. I felt whatever I wanted to do was possible and that things shouldn't be easy before they can be possible for me. I had a supportive family who said ‘Go for it.’

My mom told my teachers in school not to treat me any different from the other kids, so my teachers weren't overprotective either. This made my classmates more accepting because when we got into trouble during play we all got the same amount of punishment. And this made me feel no different from the other kids as well.

The only issue was that equal treatment didn't always take into account what I couldn't genuinely do because of my disability, and so it was cruel sometimes. It also meant that I had no accommodations, which was lacking in Ghana anyway. So you either learn to swim or you drown. In a way, this encouraged me to think out of the box to learn how to live without accommodations and still thrive.

BLOOM: What made you want to do research about children with disabilities?

De-Lawrence Lamptey:
In Ghana, many adults with disabilities beg on the streets. If I was begging on the streets, I would be classified as a person with a disability. But when I did an internship in clinical psychology and families came to see me at the hospital, they felt I didn’t classify as a person with disabilities. They would say ‘You’re not disabled.’

It meant disability was not how I looked, but what I could do. That shifted my focus. It made me realize it’s what we do with children that would eventually decide whether they will beg on the streets, or not, in adult life. If I put myself in the shoes of those begging on the street, and grew up in their family, maybe I would have ended up in the street. I needed to get into pediatric rehab where I would be able to look at how to promote inclusion and participation of children with disabilities so they could reach their optimal potential.

Eliminating barriers in society is very critical, but sometimes it can be difficult to do in the short term. For example, initiatives to remove attitudinal barriers  have been going on for years and some progress has been made, but we still have a long way to go. Another example that takes time is redesign of existing architectural structures.

So if we can’t remove the barriers in the short-term, is it possible to work with children to help them work around the limitations of their disabilities, and the social barriers they face, to reach their optimal potential?

How can we teach children to be able to say, regardless of the barriers I face, that I should strive to live to my full potential? That’s why I was interested in working with Gillian on some of her resilience projects.

BLOOM: You mentioned you’re writing up a paper here about a study that looked at parents’ expectations of residential life-skills programs. For example, our Independence Program has youth spend three weeks living on a university campus. Why was there a need for this study?

De-Lawrence Lamptey:
Even though residential life-skills programs have been going on for a long time, and people have studied various aspects of them, what parents expect their children to achieve, or the program to deliver, is relatively unknown.

How participants do after they go home to their family depends partly on the expectations of the family. I grew up in a family that was less protective. But what if parents have low expectations that their child will acquire certain skills? We want to be able to add valuable knowledge to improve the program, so that parents are better positioned to give their children the best support.

BLOOM: What kind of research do you most enjoy?

De-Lawrence Lamptey:
I’ve been privileged to work in the world of describing and evaluating programs. I like to identify best practices in program design and delivery. I enjoy looking at what impact a program actually has on clients and families, for the purpose of using that knowledge to improve.

This research helps you do two things. One, most of the time when we look at the services we’re providing, we don’t know what is working, or even when it’s not working. And if it is working, we don’t know why. Every child is so different that even though most of the services we provide are evidence-informed, they may work for some and not for others. It’s very important that we optimize the service for a large group, so we can share the knowledge around the world about the effects of the program.

Second, this kind of research gives accountability to funders of the program. They need to know what impact the program is having to determine whether to continue funding it or, if it’s not working, what are the ways we can make it better.

BLOOM: What’s most challenging about your research?

De-Lawrence Lamptey:
It’s mostly work I do sitting in front of a computer and typing, so sometimes I don’t have that much of a social life. I’m always working at a computer or reading and I’m always thinking. It can be difficult to turn it off. Even when I’m on my bike I’m thinking about the paper I’m writing, and if an idea comes to me in the subway, I have to write it down so I don’t forget. Subconsciously my mind is always working.

BLOOM: I read an article yesterday by a disabled researcher who said that people working in the field often don’t have disabilities, and tend to view themselves as experts, instead of listening more closely to people with disabilities.

De-Lawrence Lamptey:
We all have different experiences. I have been fortunate to overcome many barriers to get a PhD as a person with a disability. People with disabilities face multiple barriers that make it difficult for them to acquire the necessary expertise to do the level of research we do. So it’s very important that we work together.

The greater challenge, I believe, is that the research we produce should make a lot of sense to users. But unfortunately, if we write in a language that makes sense to people with disabilities or service providers, it can limit the chances of it being accepted for publication into a scientific journal. Every discipline has their own language that they use. So I’m torn. To rise in my career, I need to publish. But that means writing in a way that people who need to implement the research may have difficulty understanding.

BLOOM: It bothers me that the research world makes itself exclusive by using jargon that the average person can’t understand.

De-Lawrence Lamptey:
I think it's really important for us to write in a way that everyone can understand, especially those who use the knowledge.

BLOOM: What kind of work do you want to do in the future?

De-Lawrence Lamptey:
The work I want to do ultimately would be to look at how we could mobilize resources to help people with disabilities in under-served communities in Western countries and in developing countries. I feel the world has given me a lot and I need to give back, and giving back means giving back to people who are most in need.

Wednesday, January 16, 2019

With Aicam on the case, hospitalized kids have fun

By Louise Kinross

Aicam Chuong has been a nurse at Holland Bloorview for over 30 years—first as a student, then working with children hospitalized here 
with complex medical conditions and acquired brain injury related to trauma or illness. She’s seen the hospital through four name changes and two sites. A patient recently dubbed her a vampire for the precision with which she always draws blood on the first poke.

BLOOM: How did you get into the field?

Aicam Chuong:
When I was in high school I volunteered in a nursing home feeding the old folks. One day I was there when a code blue was called on the unit, and I saw doctors and nurses come, and each played a different role. One was starting the IV, one was documenting what was going on, one was giving medication orders. I thought ‘Wow, this is really interesting. I saw the dedication, and I thought maybe I want to do that. I went through a four-year nursing program in Nova Scotia and then moved to Toronto with my family.

BLOOM: Why were you interested in children and rehab?

Aicam Chuong:
Children are fun. They recover more quickly than adults and they also open up and tell you what’s going on. A child may draw a picture about being sick and write ‘I want my mommy or daddy here,’ and sometimes parents have to work. I remember calling one mother and telling her: ‘I’ve told your son that you’re coming back after lunch, so you better come back, because I have to tell him the truth.’ I love working with kids. You can console them, you can give them a hug, you can carry them around. You can play games with them to make them happy.

BLOOM: What is a typical day like on the brain injury unit?

Aicam Chuong:
I get my assignment of two to four patients and check in to read the report on how their night went. Then I go into Meditech and look at the care plan so I know how to provide care and get the medications. Some of the patients need extra tests or blood work. The kids are here for therapy, so it’s very important that they have breakfast and be ready for therapy on time. Time management is very important, and I want to make sure all of my patients get my attention.

One of the patients said she was going to give me a name, and the name was vampire, because while some nurses didn’t get her blood with many pokes, I always got it with the first poke. We have to have fun sometimes with what we do!

BLOOM: I think vampire is a great name to recognize your expertise with blood draws.

Aicam Chuong:
Something that helps us when we have to do invasive procedures is to work with our therapeutic clowns. They can come and distract the patient by doing something funny or singing a song. Our child-life specialists also help prepare our patients through play. That’s how our team works.

BLOOM: What is the greatest joy of your work?

Aicam Chuong:
I’m happy to be here and I’m happy I can help the patient and the family. There’s one joyous thing in particular I remember. One of the patients had a head injury and was staying with us from up north. One day he came back from an appointment at SickKids and he and his mother were very upset and emotional. They had been told he probably wouldn’t regain his speech.

But guess what? This patient comes to me one day and says ‘I want to learn Chinese and I want to learn Cantonese.’ I said ‘Okay, let’s start today, right now. I will take my break time—an hour a day—and I’m going to do this for you.’ We started with simple vocabulary and he learned one sentence each day. By the time he left, he could have a full conversation in Cantonese.

One day in the parking lot a Chinese couple was having trouble with paying at the gate and he started talking Chinese with them and they said ‘You speak Chinese, but you’re Caucasian?’ He came back and told me ‘Guess what I just did?’ I said ‘I hope something good.’ He told me about helping the couple outside and it was amazing. His speaking tone was so accurate. His family was so appreciative and always come back to see us when they’re here for appointments.

BLOOM: Was the patient able to speak again in English?

Aicam Chuong:
Yes. That was a very joyous story. He gained back his language and he also learned Cantonese.

BLOOM: What is the greatest challenge?

Aicam Chuong:
When families come in after their child has had a sudden trauma—like a car accident—or a tumour has been diagnosed. They don’t know what’s going on, or what will happen. The challenge as a nurse is to be present for them, to do active listening and to figure out what they most need help with right now.

BLOOM: I assume some families are very distraught and it must be hard to be on the receiving end of that pain.

Aicam Chuong:
We are here for the family. When I’m here, it’s not just my body, but my mind and my heart. The heart is very important.

BLOOM: What about when you’re incredibly busy?

Aicam Chuong:
We make time. I would rather have a 10-minute break than an hour if that can help the family. We tell them it’s a partnership. I may suggest spending an hour or two with their son or daughter so they can go have a shower or go down to Tim Horton’s for a coffee.

BLOOM: What emotions come with the job?

Aicam Chuong:
Joy, caring, understanding. Sometimes I feel helpless if there’s something we can't do and we have to transfer the patient back to SickKids or another hospital. But when I don’t have the solution to something, I go to my manager and my colleagues for help. We are a team and we stick together.

BLOOM: Do you do anything to manage stress?

Aicam Chuong:
I exercise. I go swimming five to six days a week in the community. I do Aquafit and then I go sit in the sauna and get all of the sweat out. If I work a day shift, I swim in the evening. If I work an evening shift I swim in the day. It makes a big difference. I also listen to classical Chinese music. It relaxes my mind.

BLOOM: You’ve had such a long career here. What keeps you coming back?

Aicam Chuong:
We can make a big difference in the kids’ lives and that’s what makes me stay. It’s very rewarding.

BLOOM: If you could change one thing about children’s rehab, what would it be?

Aicam Chuong:
We see so many kids who come to us after trauma. I think we need better psychological support on the unit for patients and their families. Children and parents need someone to spend more time talking with them. If a parent comes out of a meeting where the news was not good, they cry, and they need to talk about it. It’s hard to do that and devote equal time to all of your patients.

Tuesday, January 15, 2019

Retarded, imbecile, morons. Why does The New York Times still use these words?

By Louise Kinross

I could hardly believe my eyes when this New York Times piece popped into my feed yesterday: Donald Trump and his Team of Morons.

Way back in 2012 I wrote to Philip Corbett, the Times' then associate managing editor of Standards,  to criticize the paper's use of the words "retarded" and "imbecile" in headlines. 

On Oct. 26 of that year, Corbett wrote to say "our health editor and our mental-health reporter both agree that we should give stronger guidance to the newsroom about the use of 'retarded.' I will be working with them to draft a new style note."

Retarded. Imbecile. Morons. They're interchangeable, and they all originate from medical words used to describe people with intellectual disability. 

Seven long years ago, the American Psychiatric Association stated that "Mental retardation is no longer used internationally [as a medical term] or in U.S. federal legislation." 

The words retarded, imbecile and moron are not neutral words. They are slurs used to demean a marginalized population. Odd that the Times would continue to use them, when its own style guide counsels neutral language and respect for "preferred group descriptors."

People with intellectual disabilities have spoken. Everyone is familiar with the 'R-word: Spread the word to end the word' campaign. Almost a million people signed a pledge at the website in support of ditching the use of the word retard for a simple reason: It hurts people.

Imagine if the Times, instead of using the word 'morons,' had selected a word that stigmatizes a different group. What if they had written "Donald Trump and his Team of Psychos." Would anyone on the news desk have raised a red flag? Probably, because people with mental illness are a more powerful group than those with intellectual disabilities. 

Why, at arguably the world's best news organization, are editors incapable of coming up with something more imaginative and neutral than a slur for a headline? Why didn't they try: "Donald Trump and his Team of Twits." Anyone can be a twit. A twit is not associated with any devalued group. A twit, as described in the dictionary, is neutral: "an insignificant, silly or bothersome person." 

In a back and forth correspondence with me in 2013, Corbett wrote: "While imbecile,' 'moron' and 'idiot' were all used in the past to refer to people with intellectual disabilities, I don't think most modern readers or speakers of English make any such connection today."

It doesn't matter what individual staff at The New York Times "think." It matters that the paper follows its style guide and shows respect for marginalized groups. A memo to staff on ableism is in order. 

Thursday, January 10, 2019

Adults with cerebral palsy at higher risk for depression, anxiety

Mathias Castaldo is a member of Holland Bloorview's youth advisory and participated in our Dear Everybody campaign to end disability stigma. “The minute we tell someone they cannot do something because they are disabled, we disempower them. We take away their desire to have dreams and to achieve those dreams, and we ultimately take away that person’s spirit.”

By Louise Kinross

Adults with cerebral palsy (CP) have higher rates of depression and anxiety compared to the general population, according to a British population-based study in a primary-care setting.

The study, published in JAMA Neurology on Dec. 28, compared diagnoses of depression and anxiety in 1,705 adults with CP with 5,115 adults without CP who were of the same age and sex and from the same primary-care practice. Adults with CP had a 28 per cent increased risk of being diagnosed with depression and a 40 per cent greater risk of being diagnosed with anxiety. Participants were aged 18 to 89 and received a diagnosis between 1987 and 2015.

BLOOM interviewed two of the authors by e-mail: Kimberley Smith, a lecturer in health psychology at the University of Surrey and Jennifer Ryan, a research lecturer at the Royal College of Surgeons in Ireland.

BLOOM: Why was there a need for this study?

Kimberley Smith: There isn't much research that's been done looking at mental health in adults with CP. Most of the research is in children. Being an adult with CP is different than being a child with cerebral palsy, so we can't apply results from children to adults.

Jennifer Ryan: Our anecdotal experience suggested mental health conditions are prevalent among adolescents and adults with CP. From speaking with young people and adults, we were also aware that often mental health problems are more challenging and have a greater impact on their wellbeing than their physical impairment.

BLOOM: Were you surprised by the findings?

Kimberley Smith: Not really, to be honest. People who live with any long-term conditions have around double the risk of depression and anxiety than people who don't have a long-term condition.

Jennifer Ryan: We also suspected this was the case from speaking to people with CP and the health professionals who work with them.

BLOOM: In a piece Kimberley wrote for The Conversation online, you discuss some of the reasons adults with cerebral palsy may be at higher risk. These include physical causes, such as pain and fatigue, as well as social isolation, stigma, unemployment and lack of accessibility. Why is there so little research on mental health in this population?

Kimberley Smith: Research into aging with CP is still developing, and we've lacked research on the development of both mental and physical illness. We think it's because historically CP was considered a childhood condition, and people didn't really consider that most people with CP have normal life expectancy. Due to this, researchers tended to focus on childhood only. The problem with this is that we lack the evidence required to support the need for specialized care for adults with CP.

Jennifer Ryan: Perhaps the reason there's a lack of research on adults is because services for people with CP are typically organized on a pediatric model. We've found that it's very difficult to conduct research involving adults with CP because there's rarely one service where we can access them.

BLOOM: Research here at Holland Bloorview almost 20 years ago showed the increased risk of secondary conditions that result from poor care when youth transition to the adult health system. It's referred to by families as 'falling off the cliff.' We're very aware, for example, of adults with CP who desperately need physiotherapy, but are unable to get funded therapy, so go without. And adults who are unable to find specialists who understand their condition. I'm assuming the situation is similar in the U.K.?

Kimberley Smith: It's a bit different as we have funded healthcare through the NHS, but we also have the same issues around transitions from youth to adult-care services. A researcher called Professor Allan Colver in the U.K. has done research into how we could improve this. However, we're still a long way from having specialized adult CP services.

In order to advocate for this, two women set up a charity called the Adult CP Hub in the U.K. We as a research team are also in the process of publishing a series of papers on the risk of different illnesses in adults with CP, which we hope will create some of the evidence required to support the need for these services.

Jennifer Ryan: We've also heard families in the U.K. and Ireland use the term 'falling off the cliff.' Even when pediatric services try to prepare them for the transfer to adult services, people are usually still shocked when they realize how few services there are and how difficult they are to access. In particular, it's difficult to access professionals working in adult services who have knowledge of CP.

In the U.K. and Ireland, the difference in pediatric and adult clinician roles is a real challenge for people with CP. While pediatricians typically coordinate the care of young people with CP, there's a severe lack of adult rehabilitation physicians. There are also differences in the eligibility criteria for children's and adult services, which results in adults often not being eligible for services they received in childhood.

BLOOM: Is anyone studying what interventions for depression and anxiety are most effective for adults with CP? When I posted a link to your article on our Facebook page, one reader said that antidepressants increased her spasticity. So I wondered if there were studies examining what treatments work best?

Kimberley Smith: The only researcher I'm aware of who might be looking into this is Dr. Daniel Linhares, based at Columbia University in New York. This is a link where he talks about the use of antidepressants in adults with CP.

BLOOM: I just found this story about a new centre for adults with CP at Columbia!

Your study found an increased risk in depression and anxiety for adults with CP and no intellectual disability. It didn't find the same increase in adults with intellectual disability. This seems odd, in that adults with intellectual disability would have the same physical problems, such as pain and fatigue, and face the same stigma. Is it possible that depression and anxiety in adults with CP and intellectual disability is missed by clinicians?

Kimberley Smith: Based on our work, we can't say for sure. One reason could be due to 'diagnostic overshadowing:' this is a term used to describe when distress presents as challenging behaviours, rather than as the symptoms we have been taught to link with depression and anxiety. This could mean that depression and anxiety are missed.

However, there is also work that's been conducted in populations of people with intellectual disability that indicates that the prevalence of anxiety and depression in these individuals is no different from the general population. In short, we don't really know, but it's really important that as researchers we try and find out.

BLOOM: You mentioned this study is part of a series on aging in CP. 

Kimberley Smith: We have one study written by Jennifer on the increased risk of death from non-communicable diseases in adults with CP. It was recently accepted for publication in Developmental Medicine and Child Neurology. There are also two other papers looking at the risk of developing non-communicable diseases and arthropathies in adults with cerebral palsy. Both have been submitted for publication and we're keeping our fingers crossed!

Tuesday, January 8, 2019

Why a new face-scanning genetics app worries me

Photo in Nature, by Michael Ares/The Palm Beach Post via ZUMA. This girl has Cornelia de Lange syndrome, a condition with distinct facial features that an app called Face2Gene was taught to identify and distinguish from other rare disorders.

By Louise Kinross

Yesterday, Nature reported on a paper in Nature Medicine about a smartphone app called Face2Gene that helps clinicians diagnose rare genetic conditions by analyzing photos of faces.

According to Nature, "it relies on machine-learning algorithms and brain-like neural networks to classify distinctive facial features in photos of people with congenital and neurodevelopmental disorders." 

Not surprisingly, it's better at matching a face to a syndrome than clinical geneticists are.

"We failed miserably, and Face2Gene killed it," a geneticist is quoted saying. In fact, Nature used the header 'Killing it' above that section.

"Killing it" isn't quite the way to describe how it feels to be given a diagnosis of a rare genetic disorder in your newborn. For parents, it's not a game, or a sport, that you win.

If Face2Gene means families of children with the same rare syndrome will be better connected to share information and support, that would be invaluable. But I don't imagine the database serves that function.

I don't believe Face2Gene will necessarily lead to better treatments or therapies for rare disorders, and I wonder whether it will further stigmatize people with unusual faces.

To parents, there is something precious and sacred about a newborn's face. Gazing into our child's eyes is the first way parents connect with that new life.

When your child has unusual features, suddenly the face, instead of being a conduit to loving our child, becomes the focus of a great deal of negative attention from clinicians. All types of measurements of our baby's face and head may be taken and recorded, and we may be given a list of things that are "wrong."  

When my son was four days old, a geneticist asked us to have the hospital photographer take photos of his face and profile, as well as his feet, which apparently were extra wrinkly. She said it would be useful to have photos on file to help doctors identify other kids like my son. As a new parent, it felt intrusive and stigmatizing.

Face2Gene has about 150,000 images in its database. Nature noted that these are mostly white faces, and the app only recognized Down syndrome in 37 per cent of black Congolese children. They plan to address this ethnic bias by appealing to doctors for photos of more diverse children and adults. As more photos are fed into the system, it will become more accurate. It sounds benign, but are there any negative implications?

In 2012 we reported on a French study in PLoS One that found photos of children with Down syndrome elicit less positive attitudes than photos of non-disabled children, particularly if the facial features are "strongly typical" of Down syndrome. Photos of children with Down syndrome were automatically associated with a negative trait, in implicit association tests, even in people who had openly rated them positively. "These implicit associations are the result of social values...carried by our culture, said lead investigator Claire Eneau Drapeau. "They are likely deeply embedded, and difficult to break."

How will Face2Gene influence public attitudes about children with facial differences linked to genetic conditions? I don't know the answer to that, but I think it's worth asking.

I remember going to the University of Toronto's medical library, and finding photos of children and adults with my son's condition. They were often naked, looked afraid, and had their eyes blacked out. 

What will Face2Gene, and the clinicians who use it, do to promote the humanity and beauty of people with craniofacial syndromes?

A rare diagnosis is just the beginning of a long journey for a family. It's not a precise destination or answer or solution, in the way that the geneticist's words "killing it" imply. A wise pediatrician told me early on, before we knew my son's condition: "It probably won't change the therapies and treatments he receives."

At the time, I was naive. I thought that isolating the gene changes in my son's condition would lead to gene therapy or specific treatments. I even started an international association, with another mother, for families affected with the condition and we worked with researchers. At one point, cancer researchers were interested because one of the genes is a tumour suppressor. 

I'm much more cynical and realistic now.

It sounds like Face2Gene is exciting for clinicians. I'm sure it gives them a sense of mastery in pinning down a diagnosis. I'm more interested in what happens nextto that child and family, and to how we, as a culture, view and treat people with genetically-based facial differences.