Preventing suicidal behavior in people with autism
People with autism are characterized by challenges in communication, social interaction, and sensory processing, and they have focused areas of interest and a preference for routine and consistency (APA, 2013). Currently, it is estimated that 1.5% of the population in developed countries is autistic (Lyal et al., 2017), with a sex differential prevalence of approximately 3:1 (males/females) across the spectrum (Loomes et al., 2017).
While autism is significantly heterogeneous or diverse, individuals on the spectrum frequently experience physical and mental health problems (Forde et al., 2021). Mental health problems, in particular, affect approximately 70–80% of individuals with autism across all age groups, with anxiety and depression being the most common and persistent (Lever et al., 2016).
The frequency of self-harm, suicidal ideation, and suicide attempts is high in this population compared to individuals without autism (Cassidy et al., 2014). Large-scale population studies report a four- to nine-fold increase in death by suicide among autistic individuals compared to the general population, and up to a seven-fold increase in suicide attempts, with this risk being higher in autistic women and autistic individuals without cognitive difficulties (Kirby et al., 2019). Specifically, suicidal ideation reached a prevalence of over one-third (34.2%) among autistic individuals without cognitive difficulties; suicidal plans reached 21.9%, and suicidal attempts and behaviors reached 24.3%, all higher than those of the general population (Newell et al., 2023). Individuals with cognitive difficulties and autism tend to have high levels of self-harm and suicidal behavior, but a lower prevalence of prior suicidal ideation or intent.
What factors can influence suicidal ideation and behavior in autistic people?
Age
Similar to what occurs in the general population, suicidal tendencies vary with age in the autism population, and adults show higher prevalence estimates than adolescents (14 to 18 years old), but older adults (over 65 years old) have a lower risk compared to other age groups (Castillejos et al., 2021).
Social and psycho-emotional development, including the formation of their own identity, gender identity, self-concept, self-esteem, and the regulation of emotions and behavior, are complex processes that can involve stress, especially during adolescence . Patterns of autonomy, eating habits, hygiene, sleep, and self-care are also more complicated in this population (Hervás, 2023), making this a crucial period to consider in terms of preventative measures.
The genre
In the general population, men are more likely to die by suicide than women; however, evidence suggests that autistic women have a higher risk of death by suicide and suicide attempts than autistic men (Hirvikoski et al., 2020). This may even be an underestimate, as autistic women are frequently overlooked, misdiagnosed, or identified late, and as a result, may go undetected and not be included in research.
Large-scale population studies report a four- to nine-fold increase in death by suicide among autistic people, compared to the general population.
A higher prevalence of suicidal tendencies is also found among autistic individuals who are transgender or gender non-conforming, compared to those who are cisgender (i.e., identify with their assigned sex) (Strang et al., 2021). The impact on mental health, feelings of hopelessness, and suicidal ideation may be related to belonging to two social minorities (autistic individuals and gender-diverse individuals), and the potential situations of stigma and exclusion associated with these groups. Therefore, women, as well as transgender or gender-nonconforming autistic individuals, may represent groups of greater vulnerability requiring special attention.
Why does being a woman with autism make you more vulnerable?
Adversities and life events
The effect of stress related to socioeconomic adversity, as well as living in populations with less access to a network of care resources, could be factors that influence suicidal behavior in people with autism, although more studies are still needed to evaluate these aspects (Jokiranta-Olkoniemi et al., 2020; Chen et al., 2017).
Difficult life events , such as the loss of parents or primary caregivers, and a family history of suicidal behavior may also play a role in the emergence of this type of behavior in young people within the spectrum (Demirkaya et al., 2016).
A late diagnosis and communication difficulties
On the other hand, autistic people whose diagnosis is often delayed and made at later ages (people without cognitive difficulties and women) (Kolves, 2021), those who have greater difficulties in social communication (Culpin et al., 2018) and those who resort to the camouflage effect (actively trying to hide autistic traits to be more accepted, generating excessive efforts to fit in and feelings of confusion about their own identity) (Cassidy et al., 2018) have more anxiety, depression, social difficulties and fewer opportunities to receive support, and are especially vulnerable to the emergence of suicidal thoughts.
The perception of burden and feelings of frustrated belonging
More research is needed to explore the mechanisms underlying the emergence of death-related thoughts and how these progress to suicidal ideation, attempts, and behaviors. A combination of perceiving oneself as a burden and feelings of frustrated belonging can create a desire for suicide, and the acquired capacity to attempt suicide depends on overcoming the fear of death and the pain that accompanies a suicide attempt. Autistic individuals frequently report experiencing feelings of frustrated belonging and a greater perceived burden than non-autistic individuals. Similarly, in individuals with autistic traits, camouflage is associated with a greater sense of frustrated belonging (Newell, 2018).
Emotional dysregulation
Some mental health problems can also be related to suicidal thoughts or behavior in the autistic population. Emotional dysregulation (when emotions are more intense than the ability to control them), it could also influence the presence of suicidal ideation in people with autism (including those with minimal verbal communication), who may have fewer strategies to modify these emotional states , increasing their need for caregivers or family members to help them (Conner, 2020). This would lead to greater challenges in adapting to adverse life events (bereavement, change of home or school, loss of professional resources, of role models, etc.), and could underlie problems of externalization (aggressive, disruptive, or uncooperative behaviors) and internalization (anxiety, depression, withdrawal) (Mikami et al., 2009).
A combination of feeling like a burden and feelings of frustrated belonging can create a desire for suicide.
Depression
Depression In autistic individuals, depression is up to four times more frequent (10.6%-37%) and manifests differently than in typically developing individuals. This leads many people around them, including professionals, to fail to recognize these clinical presentations. It is crucial to bear in mind that traits associated with autism can overlap with some symptoms of depression , making detection more difficult. Some indicators of depressive states may include:
- An increase in restlessness and insomnia.
- Less social interaction (compared to their baseline functioning).
- Behavioral changes.
- Refusal to attend regular activities.
- Increased sensory disturbances.
- Less interest in their favorite topics.
The most specific and frequent symptom of depression in autism is anhedonia or loss of interest/enjoyment in activities that motivated them, while mood alteration or feelings of sadness are less described symptoms by those affected, unlike what happens in depression in people without autism (Ruggieri, 2002; Hervás, 2023).
Self-harming behaviors
On the other hand, self-harm is also very common in the autistic population and is often attributed to core characteristics of autism (such as repetitive behavior, as a mechanism to express pain or regulate emotions, due to communication difficulties, or as a form of sensory stimulation) (Minshawi et al., 2014), especially in children with lower verbal fluency (Cassidy et al., 2018). However, self-harm is not always considered a marker of suicide risk, unlike in the general population (Hawton, Zahl, & Weatherall, 2003; Ribeiro et al., 2016).
When and how to ask for help when self-harming behaviors occur?
Post-traumatic stress
Individuals on the autism spectrum may be more vulnerable to adverse events at different stages of life, including experiencing victimization such as theft, assault, bullying, and other forms of violence. This often leads to post-traumatic stress disorder (PTSD) symptoms related to these events (repetitive thoughts, insomnia, flashbacks , hypervigilance). This is especially common among young autistic individuals with a history of suicide attempts in general, and among transgender autistic individuals in particular, compared to young non-autistic individuals (Strauss et al., 2021; O'Hallaran et al., 2022).
Autistic people may experience victimization situations such as theft, assault, exposure to bullying, and other types of violence.
Insufficient support and protection needs
Another relevant factor related to suicidal ideation in autism is insufficient and unmet support and assistance needs (Cassidy et al., 2018). Support needs can vary at different life stages (adaptation of school environments, individualized plans for academic needs, support in social interaction and leisure spaces, in work environments, in healthcare settings, among others).
These are widely identified and preventable risk factors (Newell, 2023):
- Unsuitable learning and occupational environments (stressful, sensory overloaded, demotivating, impersonal, etc.).
- Unwanted loneliness and social isolation.
- Marginalization and stigma.
- The difficulties in finding employment.
- Exposure to adverse situations such as bullying at school, work, or other situations of victimization.
School and academic environments can be a source of stress, but also a protective factor, as they provide structure and opportunities for socialization (Hervás, 2023). The transition to higher levels of education (vocational training, university) can be a particularly stressful time, as academic and social demands increase. Some individuals on the spectrum cannot tolerate the pressure of these environments and drop out of school, staying at home without other activities, losing structure, and becoming detached from their goals and future plans. Therefore, these stages are times when we must pay special attention and appropriately design transition processes, as well as active plans so that they can return to studying, training, or working in a supported manner.
A comprehensive understanding of the factors associated with a higher likelihood of suicidal tendencies in autistic individuals is essential for proper risk assessment and the development of preventative strategies.
How can we prevent suicidal behavior in autistic people and increase their life expectancy and quality of life?
It is necessary to consider prevention and protection measures to reduce the risk of suicide, taking into account factors related to the social, local, family, and, of course, individual circumstances of each person. Prevention can be implemented at multiple levels and requires the commitment of all social actors (administrative, healthcare, educational, and family) and the active participation of people with autism.
In general, it is important to develop educational and training plans through institutions and media to raise awareness about suicide, in order to inform as many people as possible about such a relevant issue.
Increase social resources
Considering the protective factors for people with autism, at a social level, it is necessary to continue developing policies that increase specific resources and facilitate access to them in education, leisure, occupational, employment, and housing , at different stages of life. This must be accompanied by measures to support families as well, creating spaces for shared care, with the aim of reducing intrafamily stress and the impact this can have on relationships between family members.
Adapt the environments
It is very important that we adapt everyday environments (home, school, work, etc.) for people with autism, making them safe by reducing their exposure to stressors; these environments should be personalized, caring, motivating, and participatory. These components are key to promoting the emotional well-being of people with autism.
People with autism (just like those without autism) value being an active part of their environment and feeling useful. It is very important that we can identify and reinforce their strengths and skills, their interests, as well as those aspects that interfere with their functioning, in order to plan better adaptations.
Facilitate social interaction
Most people with autism are motivated and benefit from social interaction , making friends, having a partner, close family ties , participating in peer groups or associations, etc. It is important that we support them in the challenges they face in social interaction so that they can build healthy relationships and reduce feelings of unwanted loneliness and isolation, as well as increase feelings of social connection and belonging. Establishing a strong social network for difficult times is crucial to preventing suicidal thoughts (Monseley, 2022).
It is important that we can support them in the challenges they face in social interaction, so that they can build healthy relationships and reduce feelings of unwanted loneliness and isolation.
During childhood and adolescence, the relationship with primary adult caregivers is fundamental, both in educational and family settings. Fostering trust in these relationships, with attentive and sensitive caregivers, promoting strategies for seeking help from them, and preventing and decisively addressing situations of potential victimization such as bullying or harassment are essential for children and adolescents to feel safe.
Early detection
Regarding healthcare , it is important to continue training in the early detection of autism , as this is the first step in ensuring that autistic individuals receive the necessary support. For many, a diagnosis also provides a framework for understanding their functioning, an explanatory model. This is especially important for girls and women on the spectrum.
Early signs of autism
Support in identity formation
On the other hand, sexual and affective diversity can be frequent in these individuals, as can the need for identity exploration in various aspects, including gender. This reminds us of the need to respond to the internal experiences of young autistic people in their entirety. Identity formation is an integral process of childhood and adolescent development; accompanying them in this exploration, in a respectful, sensitive, flexible manner adapted to their developmental stage, can constitute another protective factor. In adolescence, identity construction can also be influenced by knowledge of their functioning within the spectrum. With the aim of safeguarding the self-esteem and self-concept of autistic adolescents, family members, caregivers, and professionals can help them improve their understanding of how they function and process information, moving away from stigmatizing terms such as "disorder" and aligning themselves with neurodiversity perspectives (Riccio, Kapp, Jordan, Dorelien, & Gillespie-Lynch, 2021).
Gender identity in people with ASD
Detection of other mental health problems
We professionals must also continue raising awarenessWe must consider the detection and treatment of other mental health problems or indicators of distress in autistic individuals , such as depression, anxiety, and post-traumatic stress . Adverse childhood experiences should not be underestimated in terms of their impact, even in later stages of life. Understanding what constitutes repetitive cognition of these events, laden with negative emotions, is relevant, and we must develop appropriate therapeutic strategies to help them reduce the distress these events cause. Promoting work on social and interpersonal skills (Schiltz et al., 2018), emotional regulation, personal competence, and resilience in the face of difficult life situations, as well as guiding their caregivers on how to generalize this learning, could also constitute an appropriate preventive strategy.
Having access to healthcare and a good mental health support network is a key protective factor.
Some studies indicate that the frequency of suicidal ideation or behavior reported through self-reporting is higher than in reports from parents, highlighting the importance of creating a safe space to openly and directly explore these issues in older children, adolescents, and adults with autism (O'Halloran et al., 2022). Suicide risk assessment should be participatory (involving professionals, individuals with autism, and caregivers), and early intervention is crucial (O'Halloran et al., 2022).
Recommendations in case of detection of suicidal thoughts
In the case of the presence and detection of suicidal ideation, some specific recommendations to keep in mind are:
- Talking openly about suicidal thoughts should not be considered taboo.
- Do not underestimate the warning signs.
- Restricting access to means that could be used in suicidal behavior in the home or in the environment where the person is usually found or where they have shown warning signs. This measure has generally proven effective, especially at times when suicidal ideation may arise in conjunction with acute emotional dysregulation or impulsivity.
- Identify trusted adults in the individual's close circle and promote strategies for seeking help, both in general and specifically when suicidal thoughts arise. Guide these trusted adults on how to recognize warning signs. It's important to remember that for individuals with autism, expressing distress, communicating suicidal thoughts, and asking for help spontaneously and explicitly can be challenging.
- If you have any concerns, consult the mental health professional assigned to the person with autism, or go to the mental health emergency service at your local hospital. Adult caregivers should not feel responsible for assessing suicidal ideation risk on their own.
- It is important to schedule frequent follow-up visits and reassessments of the situation to detect changes in the frequency, intensity, or content of suicidal thoughts.
- It is important to increase direct support for the person, especially during times of increased stress or discomfort that may lead to an increase in suicidal thoughts, in order to act early.
For people with autism to have a more fulfilling life journey, it is the duty of the entire society to get involved.
What to do if someone close to you has suicidal thoughts?
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