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 suicidality—biological, 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. 

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In dark times, reaching out

Our new A Family Like Mine video features a remarkable mother who wants to break the silence around mental illness.

Leomina Valderrama has two sons: Bryan, 22, and Brendell, 15. Since Brendell was born with cerebral palsy, seizures, and complex medical needs, Leomina has dedicated her life to his care. In recent years, her husband Gilberto struggled with depression. Leomina reached out to social worker Barbara Germon at Holland Bloorview to help her cope. Last April, her husband died of suicide. "My heart wants to reach out to those who are going through what I've been through personally," Leomina says. "There is help available when we don't stigmatize with the silence of mental illness, and raising a child with a disability is a challenge, but there is joy that comes with it." Here she talks about strategies to build her resilience as a single parent and move forward, as well as her fear of who will care for Brendell when she can't. Bryan talks about what he's learned from Brendell.

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Suicide, epilepsy drive early deaths in people with autism

By Louise Kinross

People with autism die decades earlier than the general population according to a disturbing study from Sweden.

The study, published in the British Journal of Psychiatry, found people with autism die on average 18 years earlier than peers without the condition. The study showed people with autism and intellectual disability die a shocking 30 years earlier, at about age 39.

For people with autism alone, the main cause of death was suicide. For people with autism and intellectual disability, the leading cause was epilepsy.

Swedish researchers analyzed data from two Swedish population-based registers. They included over 27,000 people with autism, of whom about 6,400 had intellectual disability, and more than 2.6 million people without autism matched for age, gender and county of residence.

On average, people with autism have a 2.5 times higher risk of premature death. Adults with autism and no intellectual disability were nine times more likely than peers to end their lives, with women being at particular risk.

I was unable to get a copy of the full study, but news reports say the underlying factors contributing to premature death may include restricted diet, less exercise, and increased social isolation, anxiety and depression. In addition, people with autism may struggle to explain their health symptoms, causing a delay in diagnosis and treatment.

This mirrors a British inquiry in 2013 that found women with intellectual disability (but not autism) died 20 years earlier on average than the general population and men with developmental disability (but not autism) died 13 years earlier.

British researchers said more than a third of the deaths studied could have been avoided with good health care—more than three times the proportion avoidable in the general population.

"Significantly more people with learning disabilities experience difficulties in having their illnesses diagnosed and treated," lead investigator Pauline Heslop says.

The non-profit Autistica in the UK announced that it will raise $10 million to better understand the reasons for the decades-long gap in life span.

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'In the absence of care, medicine is dehumanizing'

By Louise Kinross

Medicine is made up of two things: treatment and care.

But patients and clinicians alike are suffering from a devaluing of care in the health system, says Kristen Slesar, a psychotherapist who works with trauma survivors. Slesar, who supports child witnesses at the Bronx District Attorney's Office, was speaking at a three-day narrative medicine workshop at Columbia University in New York.

“Treatment is the science side—the technology, the medication, the hospital bed,” said Slesar. “Medical competence has become about how many machines and tests and things we can apply. Patients need treatment. But what happens when treatment fails or the patient dies? What happens when there is no treatment?”

The other side of medicine is caregiving—“the efforts to make someone feel physically comfortable or emotionally accepting of pain or imminent death,” Slesar said. “Care is about the inbetween moments—it's about how treatment is delivered." 

The best care happens when a clinician attends to and honours the patient's story in a way that makes the person feel understood. “Suffering is not a neutral experience,” Slesar said. “There's nothing neutral about life-changing illness or injury or the shame, stigma, fear, hope, doubt and dread that go with it. Interventions [by clinicians] are either positive or negative. If the encounter doesn't add to healing, it's hurtful. In the absence of care, medicine is dehumanizing.”

Patients are consistently unhappy, Slesar said, not with the results of their medical treatment, but with the experience of receiving treatment without care.

Care—which demands authenticity and vulnerability on the part of the clinician—is given short shrift in our medical system, Slesar said. “Offering care is equated with consumption of time and providers are forced to see more patients than is fairly and equitably justifiable. When the quality of interaction with patients is seen as a function of time spent, and there is no time, good medicine isn't consistently offered.”

In addition, caring for patients is construed as “crossing into 'emotion land'—as unprofessional and subjective, as if by being authentic and compassionate we compromise our smarts and whatever we learned in medical school [flies] out the window. We deny that we are real people who are just as permeable as our patients.”

Doctors are encouraged to stay emotionally detached as a way of protecting their mental health, Slesar said.

Yet burnout in doctors is a widespread problem and doctors are more than twice as likely to kill themselves as non-physicians.

“Burnout causes mistakes and is incredibly common and is something people don't want to talk about,” said Slesar. “Burnout is a major cause of poor healthcare delivery. It's the cause and symptom of significant damage and suffering, not just in patients but in [clinicians].”

Not only are sterile medical interactions bad medicine for patients, but they hurt physicians, Slesar said. “Physician satisfaction comes from relationships with patients.”

But to have rich relationships with patients, doctors need to be able to think and talk about their own emotional reactions to working with people who are suffering.

Just as patients need a clinician to witness and help them find meaning in their experience, “we need to acknowledge who we are and what we do as providers. We need to be able to voice these doubts and fears: the sadness of the first death certificate, the embarrassment of not knowing an answer on rounds. We're loathe to talking about our fears and mistakes. We can't sit with uncertainty or fallibility.”

Writing groups for clinicians are a forum for “giving and receiving testimony, which isn't about the facts, but about the experience and the emotion” of practising medicine. “It's that we do it together,” Slesar said. “One person reaches out for a way to express and the other reaches towards to bring it in and let the person know they are not alone.”

In narrative medicine, participants read and discuss a passage from literature, then respond to a writing prompt, writing for three to five minutes. Those who are comfortable read their pieces aloud. “We hold pieces of writing out in front of us in this loving, benign ritual,” Slesar said. “We don't focus on the quality of the writing. We write about ourselves, and even if the question is about our practice, the writing is self-revealing and self-creating. We see things differently and we see different things.”

Unfortunately, efforts to 'care for the caregiver' like this are often pathologized, Slesar said. “You're accused of being weak. Or maybe you're not cut out for the job. And when you do take time to take care of yourself you feel you're being indulgent. Self-care may even be construed as immoral.”

Given the high rates of physician burnout and suicide, “nothing is more needed than nourishment for the imagination,” Slesar said. “What quality of clinician do you want to be? How can we go from the current state of affairs to something better?”

Medicine done well is a “co-construction between patient and provider, a giving and receiving. The patient ceases to be an injury or illness and becomes a person because we are a person. There is an openness to suffering by both participants.”

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What does IQ have to do with happiness?

By Louise Kinross 

I’m a little stumped.

I read this piece called Genetic screening to enhance IQ should be embraced in The Conversation. In it, an ethicist argues we should test embryos for gene changes associated with low intelligence (70-85) and discard them because of “the bad things” low IQ portends: poor job opportunities, low income, increased risk of poverty and welfare dependency, greater likelihood to drop out of school and increased chance of incarceration and being murdered (quite a mouthful).

This 2013 Psychological Medicine study seems to support the association between low intelligence and less happiness. Of almost 7,000 people, those in the lowest IQ range (70-99) reported the lowest levels of happiness compared with those in the highest IQ group (120-129). When asked to rate their level of happiness, 12 per cent in the lowest group said “not too happy” (that doesn’t strike me as a huge number. I don’t have the full study to look at what portion of the high IQ group said they were “not too happy.”)

However, the study authors suggest that it's not the degree of intelligence per se that leads to happiness, but the fact that people with higher IQs have better incomes and health and less mental illness.

But isn't stigma one of the main reasons that marginalized groups make less money, have poorer health and experience more anxiety and depression (I'm thinking historically of women, minorities and people with a range of disabilities)? What role does discrimination have to play in these outcomes?

Remember the 2012 French study that showed that even adults who outwardly say they accept kids with disabilities carry a negative bias against children with Down syndrome at an automatic, unconscious level (deduced through implicit-association testing)? In other words, they react to people with Down syndrome based on a negative stereotype they may not even know they have. “These implicit associations are the result of social values...carried by our culture,” says the lead researcher Claire Enea-Drapeau, a school psychologist in Marseille, France. “They are likely deeply embedded and difficult to break.”

However, in spite of the pervasiveness of automatic bias against kids with Down syndrome, this 2011 American Journal of Medical Genetics study found that nearly 99 per cent of 300 people aged 12 and over with Down syndrome say they are happy with their lives; 97 per cent like who they are; and 96 per cent like how they look. 

How does this finding fit with the Psychological Medicine research above?

Further, would we ever expect people in the general population to say they were almost 100 per cent happy and okay with themselves? The AJMG study seems to fly in the face of this statement from our ethicist above: “It is pretty clear that low-normal levels of cognitive function tend to reduce well-being.”

Then I googled IQ and depression and found this article about how the rate of suicide in undergrads at Harvard over a recent five-year period was two times the national average for college students. Wouldn't Harvard students be among some of the brightest? And, according to the earlier research, happiest?

I remembered this BLOOM interview we did with Holland Bloorview neurologist and autism expert Evdokia Anagnostou about how high IQ doesn’t predict happiness in people with autism. In fact, there's a high rate of anxiety and depression in youth and young adults with higher-functioning autism.

I felt like I was being buffeted back and forth between arguments suggesting that happiness was dependent on high intelligence and those suggesting it was independent of it.

And I started to think about how perhaps we were looking at this in a simplistic way. I was reminded of Harvard psychologist Daniel Gilbert’s Stumbling on Happiness—a book that looked at common blind spots in how we imagine the future. These include a lack of empathy that allows us to imagine an experience different than our own and a tendency to overestimate the negative impact of an event and underestimate our resilience.

Gilbert said this helps explain 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 assume they couldn’t be paralyzed and happy, even though surveys of people with quadriplegia show the opposite (in fact, sometimes they rate their quality of life as better post injury).
I wondered how much resilience on the part of children with low intelligence and their families might ameliorate some of the supposed negative impacts.

During this time I read A Healing Family, a memoir by Japanese Nobel Prize winner Kenzaburo Oe, about raising a son who was born with brain damage. In it, Oe keeps coming back to the fact that despite the challenges, having a son with intellectual disability came to define his worldview and enabled his family to adapt in ways that readied them for other challenges.

“Twenty-five years ago, my first son [Hikari] was born with brain damage. This was a blow, to say the least; and yet, as a writer, I must acknowledge the fact that the central theme of my work, throughout much of my career, has been the way my family has managed to live with this handicapped child. Indeed, I would have to admit that the very ideas that I hold about this society and the world at large—my thoughts, even, about whatever there might be that transcends our limited reality—are based on and learned through living with him.”

And further on: “On a more personal level, I can imagine a very concrete example of what happens to a society that shuts out its disabled by asking myself how we ourselves—[the Oe family]—would have turned out if we hadn’t made Hikari an indispensable part of our family. I imagine a cheerless house where cold drafts blow through the gaps left by his absence; and, after his exclusion, a family whose bonds grow weaker and weaker. In our case, I know it was only by virtue of having included Hikari in the family that we actually managed to weather our various crises, such as my mother-in-law’s gradual mental decline.”

I guess I'm not sure what I think anymore.

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A tribute to Ben Tobias

Canadian violinist Adrian Anantawan contacted me this weekend to ask if we would pay tribute to Ben Tobias (above with sister Katie), a 14-year-old who was bullied before he took his own life in August. Ben was born missing both legs and his right hand.

Just a few weeks before his death, Ben, who lived in Bothell, Wash., spoke with Adrian, an internationally renowned violin soloist in Toronto who is also one-handed, to learn about how a bow could be adapted so that he too could play the violin. "My husband Mike did a search of one-handed violinists and Adrian's name popped up," writes Ben's mother Jan Davidson. "My husband called him and Adrian was very generous with his time, talking to both Mike and Ben."

After Ben's death, Adrian asked Ben's mother to write an essay about her son. She wrote "A mother's sorrow," below, while listening to this video performance of Schindler's List, which Adrian has dedicated to Ben. Following the essay is a commentary from Adrian. As you know, I have my own "Ben," and when I read this story about Ben Tobias, my heart broke for him and his family. And then I was filled with anger and outrage at the bullies.

A mother's sorrow
By Jan Davidson

My child, my child, where are you now?


I wrap my arms around his sweater and smell his sweet mysterious scent.


He is gone from this earth, gone from my arms, far too soon and far too violently.


I cry the tears that only a mother can cry. I did not, I could not, protect him from his pain. I did not see, could not see, the depth of his pain. Ultimately I failed him.


My sorrow is bottomless and I will live with that forever.


There is a pain when a child dies of disease. There is a pain when a child dies accidently. There is, I think, a much greater pain when a child considers his place on earth, finds it unworthy, and takes his own life.


And when that death is caused by an inexplicable meanness, nastiness and hate, a parent is left with overwhelming feelings of anger and revenge. A state of grace and forgiveness does not come easily or naturally.


My son, my beautiful, intelligent and wonderful son, was bullied. Bullied to death. He was 14.


Ben's life was never easy. Born in Arsenyv, Russia, he was rejected at birth by his parents and abandoned in an orphanage to die. Ironically, the reason we adopted him was the reason he was abandoned. He was a triple amputee, missing both legs and his right hand.


We devoted our lives to him, never leaving him with a babysitter. We nursed him back to health, taught him to walk, ride a bike, swim and tie his shoes. He rose above his disabilities and became a friend to all. He inspired respect and awe wherever he went, yet he wore the adulation lightly. He could never understand why people thought he was special.


He may have been born without limbs, but God granted him an extravagant intelligence. He was a genius, a child savant. He was an accomplished writer and artist and was studying the violin. He had been reading at the college level for years. He could have been anything that he wanted to be. He had the capability to change the world.


Yet as he was struggling to make the leap between childhood and manhood, with all of his issues, certain other children were determined to hobble his trajectory, to cut him down to their level. They began to bully him, in person and on the net. Every day brought a new set of humiliations for Ben. He was assaulted by physical abuse, verbal abuse, taunts and jeers. One young girl made it her life's mission to make him as miserable as possible and sought him out in school and on the net to make his life a special hell. Yet he never told us, never mentioned his humiliations, never revealed his tears.


We had no idea.


So on the warm summer evening of August 7 when his father found his lifeless body in his room, we were racked with "why" and "what if?" It wasn't until later that we pieced together the tortured and painful last months of his life.


The pain of losing a child is an unimagined hell.


The pain of losing a child to bullying is an indescribable descent into blackness. Somewhere out there are children who chose my child on whom to heap their load of scorn, to torture and to laugh at. They sleep peacefully while I am left with only pictures and memories.


We struggle to make sense of their actions. What kind of families do they come from? What kind of people are they now and what kind will they turn into? What kind of society are we creating that nurtures this kind of behaviour? Didn't they see the pain they were causing and didn't it give them pause?


There is something seriously wrong with our society when a pack of children cull from their midst the most vulnerable and fragile of their group -- a physically disabled child -- and badger him to death. This is the work of animals, not human beings. I fear for the future of our race.


For the people he has left behind, there is no "new normal." There is only a hole that cannot and will not be filled. I am left to pray only that he is in a better place. I pray that he is happy, and at peace.


I love my son with all my heart, and will continue to love him until the day I die. We needed him as much as, or more than, he needed us. We aren't complete without him. This is the painful result of suicide.


Benjamin Michael Roman Tobias, July 30, 1996 to August 7, 2010. Rest in Peace, Sweetheart. We will never forget you.


Love, Mom

From Adrian: I originally came in contact with Ben through his parents, who called me up here in Canada. The interesting thing is that I only spoke to Ben once, a few weeks before his suicide. There was a hope that I could connect him up to my prosthetist at Holland Bloorview to see if we could optimize an adaptation for his violin device, which he had begun using recently. He sounded like a pretty happy kid on the phone, and one who was on the cusp of doing some very special things in his life. There is always a peculiar connection people with disabilities share, and I felt an immediate connection with this young man.

In particular, I was hoping that the violin, and music in general, would become a special part of his life, as it was in mine. Looking back, it was music that helped me survive elementary school bullying, as it was not only an outlet to my emotions, but a way of communicating with my peers on an equal footing.

A few weeks went by, and I was curious if Ben had made any progress, and was about to message him on Facebook, when his father wrote to me about the loss of his son. It was a shock, I remember being particularly emotional. That brief connection we had on the phone was sacred: I feel that every amputee is like an extended brother or sister, as we not only share our struggles, but our hopes as well.

I knew I wanted to do something special for him, although I had no clue about his life and story. It was happenstance that Schindler's List was the perfect choice, as I found out after posting the recording that Ben's family was Jewish, and it was one of their favourite songs. Secondly, the Holocaust is, in a sense, bullying taken to a tragic extreme. The same ignorance that killed seven million Jews was the same ignorance that killed Ben. The piece is an elegy to those who have been lost too soon, and a reminder of the pain that these victims had to endure. It is the most meaningful recording I've played thus far in my career, and I'm happy to do my best to make sure Ben's story reaches as many people as possible.

Beyond that, Ben is an inspiration for my life in general, as he is one of the reasons I'm applying for grad school in education over the coming months. It is sometimes not the children's fault that bullying becomes prevalent in schoolyards. The onus remains on parents and educators to ensure that we send strong messages about social justice and inclusion. These changes have to be systemic, rather than within individual classrooms, and I believe that we can do better.

Ben, dear brother, you are not alone, and for those who are going through similar challenges in life: it gets better!

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