News The latest developments in autism research.
Profiles Portraits of scientists who are making a mark on autism research.
Toolbox Emerging tools and techniques that may advance autism research.
Spotted A roundup of autism papers and media mentions you may have missed.
Opinion Conversations on the science of autism research.
Viewpoint Expert opinions on trends and controversies in autism research.
Columnists Dispatches from experts on various facets of autism.
Crosstalk Debates and conversations about timely topics in autism.
Reviews Exploring the intersection of autism and the arts.
Q&A Conversations with experts about noteworthy topics in autism.
Deep Dive In-depth analysis of important topics in autism.
Special Reports Curated collections of articles on special topics in autism.
Webinars Presentations by leading experts on their latest research.
Illustration by Cinyee Chiu
Opinion / Columnists / Being well

Suicidal tendencies hard to spot in some people with autism

by  /  26 September 2017

Last year, I met a young man with autism who participated in a study at my lab. He did not meet the criteria for depression, and no one in my team would have guessed, based on our interactions with him, that he thought about ending his life. ­­But as part of our research protocol, we asked him directly whether he had thoughts of suicide. Only then did we learn that he had taken action on plans to end his life on two previous occasions.

Later in the interview he told us that if he did not meet a certain highly unrealistic career goal within a specific amount of time, he planned to kill himself. He repeated this often, sometimes matter-of-factly and other times almost defensively, as if challenging us to dissuade him.

Being well

Perspectives on quality of life in autism.

After spending a day with him in the lab, I would characterize this man as angry, frustrated and dejected. But none of this was apparent during his first few hours with us, and I doubt that it would have been obvious during a brief or routine screen for suicidality.

These and other experiences have led me to conclude that to effectively screen for suicidality in people with autism, we need to learn how to ask questions that lead to real answers.

The statistics around suicide in people with autism are startling: Up to 50 percent of adults with the condition have considered ending their own lives, a rate two to three times that seen in the general population1.

Adults newly diagnosed with autism are particularly at risk, having spent decades feeling atypical without knowing why2. Rates of suicide attempts and death are also elevated among individuals on the spectrum3,4.

In the general population, we often think of suicidality as going hand in hand with depression. Although depression does emerge as the leading predictor of suicidality in people with autism, there is mounting evidence that a substantial proportion of people on the spectrum who contemplate suicide would not meet the criteria for depression3,5,6.

Pattern recognition:

Risk factors for suicide in the general population span sociodemographic and cognitive vulnerabilities, such as hopelessness or impulsivity; environmental stressors, such as financial or legal problems; and mental health conditions — most notably depression, bipolar disorder, schizophrenia and substance abuse.

The man who visited our clinic was young, unmarried, underemployed and disabled (if you consider autism a disability). All of these features are risk factors for suicidality in the general population. They also describe a large proportion of adults on the autism spectrum.

Our participant was not depressed, manic or psychotic. What’s more, he had clear life goals and enjoyed discussing them.

It was hard for us to measure his degree of hopelessness because it wavered with his black-and-white thinking: He sometimes spoke with certainty that he would reach his career goal and resolve all of his perceived problems; at other times, he doubted this outcome and seemed discouraged by life.

Anecdotal evidence suggests that some people with autism approach suicide practically, even dispassionately — as a valid plan when nothing has worked to help them fit into this world. Others struggle with rigid thinking and poor impulse control, making them susceptible to suicidal tendencies during difficult situations or negative moods. These two profiles are at opposite poles in terms of planning and passion, and yet this young man seemed to fit in both boxes. Still, we could not spot his elevated suicide risk before a lengthy mental health interview.

As a field, we have learned about emotional distress in people with autism through studies that fall under many topic headings: quality of life, emotion regulation, depression, anxiety, access to services and more. Communicating across these research areas is a crucial first step to learning how to recognize people with autism who are at high risk for suicide.

Several clinical research initiatives have led the call for this type of multidisciplinary conversation. Sarah Cassidy and Jacqueline Rodgers, respectively from Coventry and Newcastle universities in the United Kingdom, were instrumental in organizing an international summit on suicide in autism, hosted in May; the same team founded a special-interest group on suicide in autism that convened at the 2016 and 2017 annual meetings of the International Society for Autism Research.

These gatherings set specific goals: to develop tools for assessing suicide risk, identify risk factors and protective factors, and identify strategies for suicide intervention and prevention.

Start by asking:

No screening tool is perfect. Suicide screens designed for the general population tend to err on the side of caution, yielding a high rate of false positives — that is, some people who screen positive do not represent a threat to their own lives.

It is possible that existing tools will be even less specific among people with autism, but we don’t have the luxury of waiting for better ones. There are steps we can take now to assess people with autism who may be at risk.

When a person with autism mentions suicidal thoughts or tendencies, either verbally or on a questionnaire, we should always ask in a calm, unapologetic and non-reactionary manner if she has thoughts about hurting or killing herself. We must take care not to tacitly assume, pass judgment or make it easy to prevaricate. In other words, do not say, “You’ve probably never thought about suicide, right? I just have to ask this.”

At a minimum, we should assess the frequency and intensity of her suicidal thoughts, the presence of a plan to act on them, access to lethal means and history of attempts. We should also note any substance use, medication changes or side effects, and any risk factors related to autism, such as impulsivity, repetitive thoughts about suicide, bullying or social isolation. And we should ask about what supports she has and her reasons to live.

If we are still even moderately concerned about suicide after this assessment, we should directly enlist family support for her (with her consent, in the case of adults). We should work with her to create a safety plan that she can refer to during times in which she is more likely to think or act on suicidal thoughts. Safety plans commonly list coping strategies and contact information for supportive family members and friends, as well as mental health services.

A blog by Autism Speaks board member Sallie Bernard, titled “8 Critical Measures to Counter Suicide,” is a quick and potentially life-saving read. Another resource is a guide from the Suicide Prevention Resource Center that describes suicide screening considerations in the general population. 

We can make the educated guess that, for every person on the spectrum who contemplates ending his life, there are even greater numbers struggling with anger, dejection, hopelessness and other precursors to suicidal ideation. Until we establish tools to screen for suicidality and emotional health problems in this population, let’s use our training and common sense to flag and support individuals at risk in the autism community.

Katherine Gotham is assistant professor of psychiatry at Vanderbilt University in Nashville, Tennessee. 


References:
  1. Segers M. and J. Rawana Autism Res. 7, 507-521 (2014) PubMed
  2. Cassidy S. et al. Lancet Psychiatry 1, 142-147 (2014) PubMed
  3. Cassidy S. and J. Rodgers Lancet Psychiatry 4, e11 (2017) PubMed
  4. Hirvikoski T. et al. Br. J. Psychiatry 208, 232-238 (2016) PubMed
  5. Horowitz L.M. et al. J. Autism Dev. Disord. Epub ahead of print (2017) PubMed
  6. Mayes S.D. et al. Res. in Autism Spect. Disord. 7, 109-119 (2013) Abstract
  • C Stargazer

    You’re still overlooking something big. Have you considered that people that have survived years of suicidal ideation might have insight into suicidal ideation? After all, Autistic people have been around for nearly a century now, “officially”. A rights movement that could have prevented a lot of my bad experiences started in the 1980s.

    I’m an Autistic adult born in the early 80s, diagnosed as a child primarily due to delayed speech/development. I had suicidal ideations(and attempts) for nearly 20 years and neither my doctors/psychologists or parents realized it until after it I overcame my issues on my own. That was during my teens and twenties.

    You don’t have to notice the signs directly, sure asking helps. (no one asked me).

    There are simple questions you can ask yourself, observations you can make.

    Here’s something that should be blatantly obvious but clearly isn’t.

    If an authority figure that an Autistic child(or adult) trusts or looks up to has the view that the only way you can be accepted or succeed is to become “normal”, with all “help” directed at that goal; that can result in causing or reinforcing suicidal ideation.

    It can also result in PTSD over a period of time. Signs of PTSD are also overlooked and often mistaken as “traits” of Autism, when in fact PTSD can be a major stifling factor to development just as it can with any other kind of child. As a result psychological well-being is often neglected in the pursuit of “conforming” an Autistic person into some ideal of “normal”.

    That is based on continued trust of the authority figure, it’s a form of dehumanization that becomes internalized. Once it’s internalized, it can remain that way for the rest of the lifespan.

    If trust is lost on the other hand, instead of/or in addition to suicidal ideation that authority figure may be seen as an enemy or tormenter, like a bully. Even the most well intentioned person that just wanted to “help”. So the outcome of rejecting someone’s unique humanity can be but not limited to suicidal ideation or defiance.

    Suicidal ideation comes from a place of learned self-judgment and comparing oneself to someone else’s standards or success. Such as thinking you should die if you can’t do X or Y, that if you can’t do X or Y you must be useless burden. Measuring one’s own value by how useful you are to society or perhaps a parent.

    I used to think that way, that I was just a burden to my parents and later society. I was also highly inarticulate and in fact rarely communicated anything during that time. Why? Because I was consumed with comparing myself to others and wanting to be normal so I could be human. Once I stopped thinking that and actually embraced myself, I learned what others have trouble doing that comes easily to me. I realized what I am capable of, a bit too late though.

    My problems began when the school teachers/authorities I looked up to as enlightened educators treated me as unworthy of education and simply warehoused me. I was considered too “low functioning” and I internalized that. Doctors, Employers, research charities that depended on dehumanization(one was named in the article), celebrities and other authorities or “heroes” reinforced that over the next couple of decades. Notice that parents are not in that list, which is one of the key reasons I was able to overcome what I had internalized at such a young age.

    Others I’ve communicated with had the opposite, the parents were the cause of PTSD and some outsiders provided them the sanctuary they needed from the onslaught. That’s what really is needed once something bad has been internalized: Sanctuary. You won’t find it in a mental hospital for example because their goal is not to accept you as you are, but to make you acceptable to them, to meet their expectations of “normal”.

    So what message do you think genetically modified monkeys send? It sends the message that “You’re so terrible we’re going to experiment on monkeys to rid the world of you”, in the name of “help” of course. Those that have internalized dehumanization won’t question it unless they really love animals. I would have considered it noble before because I had accepted a reality where the only hope of being human was to “fit in” with the crowd and be like everyone else. I know better now.

    These days I spend my time taking care of my now disabled parents because they earned that loyalty.

    This lesson in psychology should have been learned long ago, when Alan Turing was driven to suicide by similar “conformity” treatment despite his contribution to saving western civilization as we know it. It especially applies to anyone that is a member of a marginalized group or has otherwise been “outcast”.

    Also note that sensory issues and other co-occurring conditions are irrelevant to this kind of psychology. You can in fact be physically miserable while still having strong self-respect and self-worth. The most “healthy” physically fit successful person can still be brought down by psychological impact.

    Consider how geneticists nullify the Hippocratic Oath when they look at communities of genetically def people who have built their own culture as immoral and are horrified that they would breed def children. When “help” like that is forced on people, can you really call it help anymore?

    How do you balance the Hippocratic Oath when something has been internalized through Trauma at an early age? When that internalization makes you open to thinking you deserve any poor treatment? When your psychological state allows others to walk all over you and tell you who are and what you should be instead of knowing yourself.

    If you understood that, then look around. The world is full of rejection of humanity. Only a minority seek to accommodate you as you are or even try to see you as a person. The rest take what I call the “fix-first humanize-later” approach. That’s where your suicide statistics come from. Mostly out of a desire to “help” through conformity.

  • R Jones

    I lost my autistic brother to suicide last year, and at the time a question mark was raised as to whether the impulsive action that he took was a result of the medication he was on, since his dose was doubled a few days before his death. As well as better screening, I believe there needs to be better research into the effects of antidepressants on the autistic mind, since brain chemistry is different from neurotypicals.

    • adelaidedupont

      JR:

      Autistic people are recommended to take very low doses of anti-depressants for this reason – perhaps a quarter to a fifth of the dose a neurotypical with depression would take.

  • Planet Autism

    The screening tools used for anxiety and depression don’t work well for autistics because they can present atypically with these disorders. Hence masking and being unable to identify and express emotions easily (alexithymia). So until the world of psychology gets with it, this will continue to be an issue.

  • Liz

    I have just lost my father to suicide, this is the second suicide in my family and it is devastating. I am desperately trying to find answers and defences to stop this occurring again in my family and to others. We believe my father had un-diagnosed Aspergers syndrome. He had very high IQ and appeared at first glance to be totally rational, normal, logical and not too sad in front of his doctors – we went with him to the appointments we arranged, to try and tell the doctors what was really going on. We knew he was seriously distressed and suicidal and had concrete plans to end his life, so we took him to A&E and to doctors on a number of occasions. The NHS did nearly nothing to help us save Dad, prescribing mild sleeping pills and then counselling and a blood test – which were so delayed in delivery, that they never took place – he was already dead. I believe my father’s Aspergers stood directly in the way of him getting the help he needed because there was a complete lack of understanding by the medical profession of the autistic context of my father’s depression, my father’s true mental state and of the severity of the situation. He was not asked the right questions, even with all our red flags and prompting and he could not openly and honestly communicate his feelings to strangers and even to his family, as he gradually withdrew and slipped out of reach over the months and final weeks of his depressive illness.

close

Log in to your Spectrum Wiki account

Email Address:

Password:


close

Request your Spectrum Wiki account

Spectrum Wiki is a community of researchers affiliated with an academic or research institutions. To be considered for participation, please fill out this form and a member of our team will respond to your request.

Name:

Email Address:

Title and Lab:

Area of Expertise:

Comments: