Treating Mental Health Conditions in Autistic Individuals: A Toolkit for Understanding Approaches to Mental Health Care

Treating Mental Health Conditions in Autistic Individuals: A Toolkit for Understanding Approaches to Mental Health Care

March 2021

Prepared for the Autism and/or Intellectual Disability Knowledge Exchange Network (AIDE Canada)

Treating Mental Health Conditions in Autistic Individuals: A Toolkit for Understanding Approaches to Mental Health Care

Using This Toolkit

     This is an overview of approaches for treating mental health conditions in autistic individuals. Many approaches can help reduce distress and enhance well-being of those on the autism spectrum¹. Below, ways to adaptations interventions to meet the needs of autistic people are described. Importantly, one type of intervention is never thought about in isolation from others when treating mental health conditions. Most individuals benefit from a combination of different methods of support: psychotherapy, medication, and healthy lifestyle habits such as eating nutritious food, engaging in regular physical activity, and maintaining good sleep habits.  

     Please note that the text, images, and illustrative examples in this toolkit were created for informational purposes only. The content in this toolkit is not intended as a substitute for professional advice or support. Always seek the advice of a qualified mental health provider or your family physician with questions about your personal needs. Never disregard professional advice or delay in seeking professional services because of something you read in this toolkit.

Mental Health in Canada

     The term mental health refers to a wide range of conditions that affect mood, thinking, and behaviour. For example, common mental health conditions include anxiety, depression, and Attention-Deficit/Hyperactivity Disorder (ADHD).² Mental health conditions can be associated with distress and reduced quality of life.² In any given year, 1 in 5 Canadians experience a mental health condition and by 40 years old 1 in 2 Canadians have (or have had) a mental health condition.² This demonstrates that mental health conditions are relatively common in the general population. 70% of mental health conditions begin during childhood or adolescence,³ and young people 15 to 24 years old are more likely to experience mental health concerns than any other age group.^4,5 Tragically, about 4,000 Canadians per year die by suicide, which is an average of almost 11 deaths by suicide per day.⁶ Suicide is the second leading cause of death for youth age 15 to 24, and is the leading cause of death for children age 10 to 14 in Canada.^7,8 This indicates great need to recognize mental health needs and support wellness.   

Mental Health in Autistic People

     Studies suggest that mental health conditions in autistic individuals is especially high.^9-14 A review of 96 studies showed that several mental health conditions often occur in autistic people. For example, anxiety, depression, ADHD, Obsessive-Compulsive Disorder (OCD), schizophrenia and other psychotic disorders, eating disorders, substance misuse, and sleep-wake conditions are reported by autistic youth and adults.¹⁵ Although the prevalence of these conditions vary widely, their occurrence is more common among autistic people than non-autistic people.^15,16 For instance, some community and clinic-based studies have shown that young autistic people have a prevalence rate of 74% for one or more of these mental health conditions. ¹⁷ Another study suggested that 70% of young adults with autism experienced at least one episode of major depression, 50% had repeating depressive episodes, and 50% had an anxiety disorder.¹⁸ Young children with autism are most commonly diagnosed to have ADHD, and depression and anxiety disorders are more common in autistic teens and adults.^10,15,17,19 Despite how common these mental health conditions are, they sometimes go unrecognized among individuals with autism.²⁰ This may limit autistic people from seeking mental health care.²⁰ Given the negative impact of poor mental health on quality of life, it is crucial to get help for these mental health conditions among all people including those with autism.¹⁵

Encouragingly, there has a lot of research and improvement in care over the past 20 years.²¹ This research indicates the benefits of support for autistic individuals who participate in various forms of psychotherapy.^21,22 Although much of this research has focused on a form of psychotherapy called Cognitive Behaviour Therapy (CBT), recent research has examined other non-CBT approaches which have been helpful among autistic individuals. Some psychotherapeutic approaches have been deemed well-established for reducing the impact of mental health symptoms, whereas other approaches show preliminary or emerging evidence,²² which means there is still more uncertainty about their impact.

     The following sections of this toolkit offer a summary of various psychotherapies. Keep in mind that many individual or personal factors impact the fit of a specific approach for someone. Finding an approach that fits for you should be done in consultation with a professional who knows you well. Trying to live in balance and thus treating the “whole individual” is important, including being sure you are engaging in personal interests and hobbies, have social connection and relationships, and engage in a healthy lifestyle such as a balanced diet, exercise, and enough sleep.  

Tailoring Support

     Adjustments to how psychotherapy is typically provided has been recommended for autistic individuals, and should be considered regardless of the approach used:^22,25,26

Psychotherapeutic Approaches for Treating Co-Occurring Mental Health Conditions in Autistic Individuals

     There are several psychotherapeutic approaches to help with mental health conditions in both non-autistic and autistic individuals. Some people may find they prefer a certain approach. While most people do not participate in all forms of psychotherapy, they might explore different approaches in order to discover what fits best for them. Here’s an overview of approaches with quite a lot of evidence or emerging evidence in existing research:

Cognitive Behaviour Therapy (CBT)

     CBT is a form of psychotherapy that emphasizes the important role of thoughts in how individuals feel and act.²⁷ Although there are different types of CBT, these types generally focus on helping people explore the way they think about what is happening around them. CBT suggests that unhelpful thoughts and the meanings people give to events can make it difficult for them to confidently approach situations.²⁷ These unhelpful thoughts contribute to emotional difficulties such as worry and sadness. ²⁷ To counteract these challenges, CBT helps people develop new ways of thinking in order to feel and act differently, even when the situation doesn’t change.

     In CBT, people learn a range of cognitive and behavioural strategies. For example, people might learn to identify problems more clearly, develop an awareness of their automatic thoughts, and see a situation from a different perspective.²⁸ They might explore how their past experiences can affect their present feelings and beliefs, and they might learn to develop a more positive way of seeing situations.²⁸ CBT helps people identify unhelpful thinking patterns such as fearing the worst, overgeneralizing, thinking in ‘all-or-nothing’ ways, or focusing on how they think things should be as opposed to how they are.²⁸ People might keep daily listings or diaries of their thoughts, feelings, and actions, and they talk with their therapist about them.²⁸ They might role-play and receive feedback from their therapist, and they practice newly learned skills inside and outside of the therapy setting (e.g., home practice).²⁸ Practicing new skills promotes positive change and growth.

     Another part of CBT is helping people learn to face their fears or worries rather than avoid them.²⁸ Facing fears and worries is important because although avoiding feared situations makes us feel better in the short-term, it teaches the person that the best way to control their anxiety is to avoid whatever sets it off. Avoiding feared situations takes away the opportunity to learn that, in fact, the person can handle the thing they are afraid of. When learning to face fears, the person first learns several strategies such as more positive ways to think and cope, as well as ways to calm one’s mind and body. Next, the person works with their therapist to break a feared situation down into small, manageable steps each with increasing difficulty (this is called a ‘fear ladder’).²⁸ The person then completes the steps that gradually increase toward their most feared situation. Facing fears helps fear decrease because the person achieves success at each escalating step, and they learn that they can indeed handle whatever it is that is frightening them.²⁷ Eventually facing someone’s fears can help break the old pattern of running away from or avoiding one’s fears in a non-helpful way, for instance, in ways that bring discomfort.²⁷

CBT is usually:

-        Led by a mental health expert (e.g., psychologist, clinical social worker, counsellor, or another therapist).

-        A short-term therapy (e.g., 20 or fewer sessions).

-        Facilitated 1-1 (individually) or in groups.

-        Instructive (i.e., teaches a person how to perform a specific strategy or skill or provides information about a specific concept).

-        Structured (i.e., follows a predictable format each session). 

-        Action-oriented (i.e., includes practice inside and outside of the therapy session to approach uncomfortable situations while practicing new skills).   

-        Goal-focused (i.e., person sets goals about what they’d like to achieve and works toward them in collaboration with their therapist).

     There is considerable evidence for using modified (as listed above on pp. 5) CBT to treat anxiety and depression among children, youth, and adults on the autism spectrum.^29,30 While research has shown CBT to be effective for autistic individuals with minimal to no intellectual or communication challenges, less is known about how this treatment works for individuals with these differences.³¹   

     A closely related form of psychotherapy to CBT is Exposure with Response Prevention (ERP). ERP is well-regarded treatment for obsessive-compulsive disorders in the general population.³² In ERP, people are supported to face their fears similar to how it is done in CBT (i.e., exposure).^33,34 Importantly, people learn to refrain from engaging in specific urges or actions (compulsions) that they would typically perform to reduce their anxiety in the feared situation (i.e., response prevention).³⁴ The ERP model indicates that the intensity of a person's desired response will diminish or ease over time with repeated times of being exposed to the situation they fear – if they are supported to not use the old rituals, habits or compulsions to “undo” or neutralize their fear.^33,34 As such, ERP helps people eliminate undesired responses by supporting them to face their fears while preventing them.^33,34 Although compulsive behaviours may seem helpful for reducing anxiety in the short-term, they get in the way of everyday life in the long-term. Importantly, the exposure offered in ERP start gradually and increase slowly overtime with a high degree of support from the therapist.

     Although ERP is well-established for use with children, youth, and adults in the general population, ³² ERP has received less investigation among autistic individuals. Some early evidence suggests that modified ERP may be effective for individuals with autism who do not also have intellectual impairment.^35,36 Little is known about this approach for autistic individuals with cognitive and/or language difficulties.         

Mindfulness-Based Interventions

     Mindfulness-based interventions are a form of psychotherapy that may include specific approaches such as Mindfulness Based Stress Reduction (MBSR) and Mindfulness-Based Cognitive Therapy (MBCT). These approaches have been shown to reduce distress and facilitate wellbeing in non-autistic people.^37-40

     Mindfulness-based interventions emphasize kind, gentle and non-judgmental attention to the present moment or experience.⁴¹ Although there is no universally accepted definition of mindfulness, it may be understood as a state in which a person becomes aware of their physical, mental, and emotional condition in the present moment.⁴¹ Generally, people learn to pay attention to their experiences such as how their body is feeling (bodily sensations), and their thoughts and feelings. People are encouraged to accept these experiences without judging them, which can make it easier to get in touch with how one is feeling, which may help to prevent a downward spiral of negative thoughts and feelings.³⁷ People may learn to try meditation within the therapy setting and they are encouraged to practice these approaches in their daily life.⁴¹ While meditation is a common part of mindfulness-based interventions, other strategies are also used. For instance, gentle yoga movements, stretching, sitting or walking in nature, breathing exercises, “body scans”, and “guided imagery” are some other strategies often used in mindfulness.⁴²

Mindfulness-based interventions are usually:

-        Led by a mental health expert (e.g., psychologist, clinical social worker, psychiatrist, nurse, counsellor or another therapist).  

-        A short- or long-term therapy (e.g., lasting 5 weeks to 12 months).

-        Facilitated 1-1 (individually) or in groups.

-        Instructive (i.e., teaches a person how to perform a specific strategy or skill or provides information about a specific concept).

-        Structured (i.e., follows a predictable format each session). 

-        Action-oriented (i.e., includes practice inside and outside of the therapy session, with mindfulness at home often considered a key part of training in this approach).  

-        Goal-focused (i.e., person sets goals about what they’d like to achieve and works toward them in collaboration with their therapist).

     Other commonly known psychotherapies that incorporate mindfulness-based techniques include Acceptance and Commitment Therapy (ACT) and Dialectical Behavioral Therapy (DBT). While ACT and DBT do not emphasize meditation, these approaches use other mindfulness exercises as core techniques to encourage more awareness of oneself and help move toward desired change.⁴² The essence of ACT is to learn to be aware of your personal here-and-now experience with openness, interest, and receptiveness.⁴³ The ACT model encourages people to take committed action toward a direction they personally value.⁴³ A key feature of ACT is to allow aspects of one’s experience to exist without necessarily enjoying or approving of them (i.e., acceptance).⁴³

     DBT also uses mindfulness as an important part of treatment wherein clients learn how to live in the moment and be fully aware of their thoughts, feelings, sensations, and impulses.⁴⁴ In DBT, people learn to tolerate intense emotions, maintain positive and healthy relationships with others, and identify and change powerful feelings.⁴⁴ While ACT and DBT include pieces of mindfulness, these approaches mainly focus on the thoughts and feelings experienced during the activities of mindfulness and incorporate other areas of skill development.⁴²

     Mindfulness-based interventions have had some success and seem promising in easing distress among autistic adults with minimal to no intellectual or communication challenges.^45-47 Less is known about the effectiveness of mindfulness-based interventions in autistic children; however, the results of more and more research are suggesting that mindfulness may be a helpful approach for autistic children and youth.⁴⁸    

Interpersonal Psychotherapy

     Interpersonal psychotherapy (IPT) is a well-established approach for treating non-autistic adults and youth with depression.^49,50 IPT focuses on the back-and-forth interaction between a person’s mood and their social relationships.⁴⁹ The IPT model is based on the idea that there is a ‘back and forth’ association between mood and relationships, where more negative feelings can harm relationships, and in turn, more problematic relationships can worsen one’s mood.⁵¹ As such, people learn to build better skills in forming positive relationships with others, and to increase their awareness of how their mood can influence relationships.⁵¹ Improving the quality of a person’s relationships and social functioning helps reduce their distress.⁵¹

     IPT addresses interpersonal or relationship-based problems such as being social isolated or being involved in unfulfilling relationships as well as disputes or conflict between partners, family members, or close friends.⁵² IPT also helps someone who is dealing with grief such as the loss of a loved one or significant relationship, and major life transitions (e.g., ending a relationship, moving).⁵²

Interpersonal psychotherapy is usually:

-        Led by a mental health expert (e.g., psychologist, clinical social worker, counsellor or another therapist). 

-        A short-term therapy (e.g., lasting 12 to 16 weeks).

-        Facilitated 1-1 (individually).

-        Explorative (i.e., less rigid in how it is structured, which means less directive and structured than other psychotherapies).

-        Client-led (i.e., client identifies the interpersonal or relationship-related issues they wish to address and ranks them in order of importance, while the therapist offers supportive listening and clarification of issues).    

-        Socially-oriented (i.e., emphasizes change in one’s day-to-day surroundings as opposed to within the individual).  

     Although a recent review including multiple studies showed IPT to be effective for treating depression in young people with autism,²⁹ more research is needed to understand this approach in relation to other areas that are causing problems, for instance, in areas that aren’t focused on one’s negative mood or feelings (e.g., anxiety). Further, autistic people with accompanying intellectual disability have not been included in most of these studies, which limits our understanding of this (and other) psychotherapies for these individuals.²⁹  

Unified Protocol for Transdiagnostic Treatment of Emotional Disorders (UP)

     Unified Protocol for Transdiagnostic Treatment of Emotional Disorders (UP) is an emotion-focused psychotherapy that is not focused on a diagnosis, but instead addresses underlying factors or important issues that might lead to whatever is problematic for the individual. That could be anxiety, depression, or anger-related problems.⁵³ UP is cognitive-behavioural in nature⁵⁴ – that is, it is about how we think and respond to these issues of concern. It relies on aspects of CBT as described above.

     Better controlling one’s emotions (or what we call, ‘emotion regulation’) is the main focus of UP and people learn a range of skills related to emotion recognition and management of distressing feelings.^53,54 Similar to other approaches, people learn to tolerate and cope more positively with strong negative emotions through exposure to these feelings. People might also learn to think about difficult situations and experiences in a more flexible manner.⁵⁴ Lastly, UP includes strategies to enhance motivation, manage crises, and develop helpful skills used by key support people (e.g., caregivers, parents, partners).^53,54

UP is usually:

-        Led by a mental health expert (e.g., psychologist, clinical social worker, psychiatrist, nurse, counsellor or another therapist).

-        A short- to long-term therapy (e.g., 21 sessions or until the client demonstrates mastery over the material).

-        Facilitated 1-1 (individually) or in groups.

-        Instructive (i.e., teaches a person how to perform a specific strategy or skill or provides information about a specific concept).

-        Structured (i.e., follows a predictable format each session). 

-        Action-oriented (i.e., includes practice inside and outside of the therapy session to approach difficult or uncomfortable situations while practicing new skills).   

-        Goal-focused (i.e., person sets goals about what they’d like to achieve and works toward them in collaboration with their therapist).

     Researchers have found that UP is effective for non-autistic adults with anxiety and depression,^55,56 while research for non-autistic children and youth is less developed and more is research needed.^57,58 UP has been suggested as a potentially powerful approach to addressing emotional difficulties in individuals with autism, who often struggle to a greater degree with emotion regulation than non-autistic people. ⁵⁹ However, this has not yet been studied, and research is needed to test how UP can assist individuals with autism and mental health conditions. ⁵⁹

Trauma-Focused Therapies  

     Several trauma-focused psychotherapies exist to assist individuals including children, youth, and their families overcome the negative effects of traumatic experiences which are very difficult or upsetting experiences that have happened in someone’s life. Practitioners may also use a trauma-informed approach, which considers the person’s trauma experience in other psychotherapeutic approaches (e.g., mindfulness).

     Trauma-Focused Cognitive Behavioural Therapy (TF-CBT) is one evidence-based example of a specific trauma-focused therapy. ⁶⁰ In TF-CBT, people are provided, first and foremost, with a secure and safe environment to share their trauma experience.⁶⁰ Specifically, TF-CBT emphasizes psychoeducation and building relaxation, emotion regulation, and develops cognitive coping skills like self-monitoring and behavioural activation.⁶⁰ TF-CBT also focuses on a trauma narrative, which is a technique to help individuals make sense of their experiences while also acting as a form of being exposed to and managing difficult memories.⁶⁰ When completing a trauma narrative, the story of a traumatic experience may be told through talking, writing, or other artistic means.⁶⁰ Sharing a trauma narrative makes traumatic memories more manageable and diminishes the painful emotions they carry.⁶⁰ TF-CBT might also include a client-support person (e.g., caregiver of a child) to enhance safety for trauma triggers (upsetting issues and responses that are caused by exploring the traumatic and difficult experience). Also, a plan for keeping or maintaining newly learned skills in the future may be included in TF-CBT.⁶⁰  

     Another trauma-focused psychotherapy is Eye Movement Desensitization and Reprocessing (EMDR).⁶¹ Similar to TF-CBT, EMDR helps a person find and process or manage traumatic memories and other difficult life experiences. During EMDR, people briefly identify to an emotionally distressing event or memory, while, at the same time, focusing on something else in their environment (an external stimulus).⁶¹ A therapist-led form of eye movement where the person uses their eyes to track the therapist’s hand as it moves back-and-forth across their field of vision is a common example.⁶² Other movements such as hand-tapping can also be used.⁶² A focus on difficult memories combined with these specific movements helps individuals gain exposure to overwhelming thoughts and emotions so that new thinking can be developed; for instance, new associations between the traumatic memory and a healthier way of managing this difficult information.^61,62 These new associations or ways of thinking help move the person towards healthier mental and physical responses to their trauma and stressors.⁶¹

Specific Trauma-Focused Therapies are usually:

-        Led by a mental health expert with specialized trauma-focused training (e.g., psychologist, clinical social worker, psychiatrist, nurse, counsellor or another therapist). 

-        A short-term therapy (e.g., lasting no more than 16 sessions).

-        Facilitated 1-1 (individually).

-        Instructive (i.e., teaches a person how to perform a specific strategy or skill or provides information about a specific concept).

-        Structured (i.e., follows a predictable format each session). 

-        Therapist-led (i.e., primarily includes guided practice inside the therapy session).  

-        Goal-focused (i.e., person sets goals about what they’d like to achieve and works toward them in collaboration with their therapist).

     Autistic people may be more likely to experience traumatic events due to a combination of individual factors, such as social and communication differences, and environmental factors, such as isolation, societal attitudes, and increased interaction with multiple service systems.⁶³ Since the stress of traumatic events can negatively contribute to one’s overall well-being, researchers and practitioners have considered the use of trauma-focused therapies in children, youth, and adults with autism.⁶³ This research is in its early stages and little is known about the appropriateness or helpfulness of trauma-specific therapies for autistic people. For instance, the use of TF-CBT in autistic children has been explored in the literature, but has not yet been studied in major evaluation studies.⁶⁴ EMDR has been investigated in autistic adults;⁶⁵ however, the effects have not yet been studied beyond single-cases.⁶⁶ Much more research is needed to assess the effectiveness of trauma-focused therapies for autistic individuals.

Conclusion

     Psychotherapy is a way to help people manage troubling thoughts, feelings, and behaviours so they can increase their overall well-being. ^23,24 Autistic individuals are more likely than non-autistic people to experience mental health conditions, and access to tailored psychotherapy to meet their needs is important and can be very helpful. Encouragingly, there has been rapid growth in research and practice to better understand mental health in autism. To date, research indicates the benefit of psychotherapy for autistic individuals.^21,22 But more research is needed to test the effectiveness of some treatments for individuals with autism, especially among those with more significant intellectual and communication differences. But preliminary findings are encouraging.²² Many personal factors of the individual may have an impact on the fit of a specific approach for that person. If you’re considering therapy, we encourage you to talk with a professional who knows you well.

How to Access Mental Health Care?

     If you are interested in learning more about psychotherapy, talk to a professional in your area. Regions are quite different in terms of service availability and providers, but information for community, government, and social and health services is available across Canada.

References

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22.  White, S.W., Simmons, G.L., Gotham, K. O., Conner, C. M., Smith, I. C., Beck, K. B., & Mazefsky, C. A. (2018). Psychosocial treatments targeting anxiety and depression in adolescents and adults on the autism spectrum: Review of the latest research and recommended future directions. Current Psychiatry Reports, 20, 82.doi: 10.1007/s11920-018-0949-0

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25.  Walters, S., Loades, M., & Russell, A. (2016). A systematic review of effective modifications to cognitive behavioural therapy for young people with autism spectrum disorders. Review Journal of Autism and Developmental Disorders, 3(2), 137-153. https://doi.org/10.1007/s40489-016-0072-2

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