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Toolkit

Emotional Regulation and Dysregulation in Autism: Considerations in Adulthood

David Nicholas, Christopher Kilmer, Maxine Share
Emotional regulation refers to how people recognize and monitor what they are thinking and how they are feeling. This review offers ideas for understanding and supporting emotional regulation. Information and resources are offered.

Contents

Introduction
Alexithymia
From Childhood Onwards
When Does Emotional Dysregulation Become a Problem?
Current Supports and Treatments
Supportive Approaches that May be Helpful

Summary
References

 

 

Introduction

Emotional regulation refers to how people recognize and monitor what they are thinking, how they are feeling and acting, and how they manage an emotional experience.1 The Cleveland Clinic2 indicates, “You can think about emotional regulation like volume control for your feelings. When you use the volume control for a device, you can keep it from being too loud. With emotional dysregulation, your brain can’t regulate emotion signals. In effect, your volume control doesn’t work like it should, making your emotions ‘louder’ and harder to manage.” In addition to making emotions harder to manage, emotional dysregulation may involve potentially harmful ways or coping strategies being utilized by the individual.1

Autistic adults may have difficulty processing their emotions3 and understanding the emotions of others, though this is currently debated in the literature.4 This may contribute to daily life events or stressful experiences becoming overwhelming.5 One possible consequence is the experience (or increase) of anxiety and depression,5,6 and individuals may turn to potentially harmful coping strategies such as self-injury, self-medicating, or isolating oneself from social interaction.1 One study found that Autistic adults are three times more likely than their non-autistic peers to visit an emergency department for psychiatric reasons.7


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Alexithymia

This term describes difficulties with emotional awareness, including challenges identifying and describing one’s own feelings or the feelings of others, and expressing emotion.8 While autism and alexithymia are commonly linked, it is important to note that alexithymia and autism are two separate things. An Autistic person does not necessarily experience alexithymia, and someone experiencing alexithymia is not necessarily autistic.8 However, it is thought that alexithymia can contribute to emotional regulation difficulties faced by many Autistic adults8 and may impact mood disorders in this population.9 Alexithymia often affects social interaction due to difficulty recognizing others’ non-verbal communication cues, such as facial or tonal expressions.8

Learn more about alexithymia here: Alexithymia & Autism: When you don’t know what emotion(s) you are feeling

 


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From Childhood Onwards

A literature review by Dell’Osso and colleagues9 examined studies on emotional regulation in Autistic children through to adulthood. The authors reported that Autistic individuals often use a strategy termed suppression, in which they suppress expressions of emotions. This has been linked to higher depressive symptoms and lower well-being. Ruminating on past negative events was thought to relate to difficulties with emotional regulation.9 Additionally, studies found that emotional dysregulation, intolerance of uncertainty, depression, and anxiety were linked and potentially influencing one another.9 While typically explored in studies focusing on parents and children, some Autistic adults report the experience of meltdowns – an intense loss of control due to being overwhelmed.10 Autistic adults reported that meltdowns can serve as a way to regulate their emotions and communicate needs, but also can have strong negative internal (e.g., intense feelings) and external (e.g., judgment from others) impacts.10

Emotional dysregulation may be expressed in different ways, but examples are offered by the Cleveland Clinic2, as described verbatim (below) from their summary:

  • “Having trouble steering your moods, causing you to feel stuck or unable to make yourself feel better, especially with negative moods and emotions like depression, anxiety, etc.
  • Becoming easily frustrated by small inconveniences or annoyances.
  • Mood swings.
  • Impulsive behavior.
  • Mania or hypomania.
  • Trouble with emotions interfering with how you pursue goals and achieve desired outcomes.
  • Being prone to losing your temper.
  • Persistent irritability or anger between outbursts.”

A Reviewer of this toolkit noted :

“The above list describes features of meltdowns that are externalized. Many Autistic individuals experience internalized meltdown in which the person may be quite distressed, but it is not obvious to others. A quiet meltdown can mean the person is stuck – mentally ‘frozen’ – and cannot take in or process what is happening. Some may literally slow down in their movements, with behaviour that may be mistaken for catatonia. They may require physical assistance or guidance to move. It is important for general society to be aware of this potential manifestation of emotional dysregulation.”


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When Does Emotional Dysregulation Become a Problem?

As noted by the Cleveland Clinic2, “When emotional dysregulation is severe, it can cause symptoms that disrupt your life, social relationships, career and more.

Some of the more severe effects can include:

  • Verbal outbursts (shouting, yelling, screaming or crying).
  • Aggressive or even violent behavior (towards objects, animals or people).
  • Trouble maintaining friendships, relationships or other forms of social connection.”

Further, as noted by a reviewer and as identified in the literature,11 some experiences are more internalized, which are often called ‘shutdowns’. In this process, the person may be unable to move without guidance, and perhaps may be unable to respond to others. They may stare blankly and seem to be ‘zoned out.’


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Current Supports and Treatments

While further research is needed in this area, initial reports show some promising practices that need further exploration. Outlined by the Cleveland Clinic,2 primary forms of support or treatment are:

  • Mental health therapy which involves working with a mental health professional. This support can be helpful in better understanding why and in what ways one is experiencing emotional dysregulation. Coping skills and strategies can be developed. Clinicians should be neurodiversity-affirming and have deep knowledge about supporting Autistic individuals.
  • Education: Autistics who struggle with emotional regulation may not have the words to match what they are feeling in their body. Finding professionals who can teach the individual to recognize and then label what they are feeling would help to address the underlying cause of loss of emotional control. When the person recognizes, for instance, that a clenched stomach and jaw indicate anger for them, they can then respond in more appropriate ways than lashing out or shutting down. An occupational therapist with awareness of the interoceptive sense could be very valuable in enhancing a person’s body awareness as it relates to rising emotions. A speech language pathologist with expertise in social communication can help the person articulate what they are feeling, and perhaps offer some scripted responses to help the person feel they have control over their actions.
  • Medications can assist in managing difficult emotions. This requires consultation and support from a healthcare provider with knowledge in mental health supports and autism.
  • Supportive care and addressing ‘symptoms’ involve addressing the underlying issues that contribute to emotional dysregulation.

As noted by the Cleveland Clinic,2 emotional dysregulation may require the assistance of a healthcare provider for diagnosis and support. Mild emotional dysregulation may be able to be managed by the individual, but treatment and support can assist with this. In cases of more moderate or severe dysregulation, relationships, education, career, and personal safety can be impacted. Individuals can become aggressive, reckless, violent or self-harming, which might lead to encounters with law enforcement.

As needed, you can seek help immediately by calling 911 or attend an Emergency Department at your local hospital. If emotional dysregulation impacts one’s life, engaging with a healthcare provider can be helpful. If emotional dysregulation involves actual or risk of harm to self or others, or suicidal thoughts or behaviors, call 911 or go to the Emergency Department.


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Supportive Approaches that May be Helpful

Dialectical Behavior Therapy and Mindfulness-Based Therapy.

There is some evidence suggesting that Dialectical Behaviour Therapy (DBT) can help to reduce emotional dysregulation in Autistic adults.9 Studies in which DBT was provided to Autistic adults found improvements in self-harming behaviours and suicidality.9 In one study,12 the lead author is an Autistic psychology researcher who has been in DBT. This study suggested that DBT has the potential to be at least as effective with Autistic people as the general population if slight modifications are made, such as increased visual materials and formats that target the interests of the Autistic individual. Researchers note that such modifications would need to be tested for their effectiveness.

Mindfulness-based therapy, which involves focusing on one’s present thoughts and feelings, has also shown improvement in depression, anxiety and rumination in Autistic adults.13 Information about Mindfulness is available from the Centre for Addiction and Mental Health (CAMH) in Toronto; see the "Mindfulness for YOU Series" on YouTube.

A reviewer noted the importance of Mindfulness programming that is specifically designed for Autistic people.


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The Emotional Toolbox

The Emotional Toolbox14 was developed by Dr. Tony Attwood, a psychologist specializing in autism. Included below are sections of this Toolbox, which focus on different strategies and examples that Autistic people can consider for managing emotions:

“Physical Tools: physical activities that quickly release emotional energy

  • Jump on a trampoline, on the spot or on a big ball
  • Go on the swing
  • Take a walk, go for a run or a bike ride, dance, swim
  • Play sports or do exercises
  • Do housework
  • Watch a comedy (to laugh)

 

Relaxation Tools: slowly release emotional energy and help to calm and lower the heart rate

  • Retreat to a quiet place
  • Do progressive muscle relaxation (tension-release)
  • Draw or paint
  • Do crafts, read, listen to music
  • Rock gently
  • Access fidget items (e.g. stress ball, stones, soft objects, worry beads)
  • Organize personal belongings or do relaxing chores
  • Watch a television program, favourite film, look at a photo album
  • Listen to a recorded message from an important person in one’s life (parent, grandparent)
  • Ask for a break and incorporate breaks into the day

 

Social Tools: help manage emotions and change moods through interaction with a person or an animal

  • Go see a person you trust
  • Talk to a friend, teacher, parent, grandparent, counselor or support person
  • Show altruism – help others or do something for someone
  • Volunteer (help classmates, students in another classroom, in the library or office, at a local pet store)
  • Spend time with a pet

 

Thinking Tools: capitalize on intellectual strengths to teach how to change thinking and manage emotions

  • Replace (negative) thoughts with antidotes (positive self-talk)
  • Create a mantra (positive and calming statement)
  • Imagine a calm, positive or happy scene or area
  • Imagine a positive result through visualization or Cognitive Picture Rehearsal
  • Use logic and facts to put the situation in perspective
  • Engage in an academic task that helps one calm down and feel successful
  • Keep an object that symbolizes calm
  • Create a “happy book/album” of successes, fun activities, talents and strengths
  • Peruse “self-help” information
  • Refer to strategies on the 3-point or 5-point scales, emotional thermometer, etc.

 

Special Interest Tools: provide pleasure, relaxation and serve as an “off switch”

  • Engage in a special interest for a specific amount of time (make time more concrete with a timer, watch, etc.)
  • Incorporate special interests into the schedule
  • Incorporate special interests or talents into the curriculum, employment or volunteer work

 

Medication: used to treat mood disorders

  • Work collaboratively with health care professionals
  • Follow the physician’s instructions
  • Record any side effects (positive and negative) and discuss with the physician
  • Understand that medication is a tool but that it should not be the only tool in the toolbox

 

Other Tools: reduce anxiety or effects of negative emotions but do not belong in a specific category

  • Read biographies and autobiographies of people with an autism spectrum disorder (ASD)
  • Develop self-advocacy skills
  • Educate others about strengths, needs and accommodations necessary for success
  • Self-reinforce for using new tools
  • Identify sensory tools that allow avoidance of certain negative sensory stimuli or minimize their effects.”

 

Learn more about understanding sensory challenges here: Sensory & Motor Strategies Collection


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Response by a Reviewer with Lived Experience

“The concept of the ‘emotional toolbox’ is one that we share with many parents of Autistic children and teens. However, the real goal of any help with emotional regulation should be finding ways to prevent the meltdown from happening in the first place. The hope is that as children they are aware of their sensory needs and are being accommodated for those, and that they have been taught how to ask for help if they need it. Sadly, this does not often occur, so you can imagine that Autistic adults who struggle with emotional regulation may have not known how to prevent a meltdown from occurring.

So many of the tools in this toolbox assume that a person can identify what they are feeling in their body, and what emotion it is connected to. For adults, I believe that they should plan ahead to prevent any kind of challenge from occurring. For example, if you are a parent who loses emotional control in contentious school meetings, then work with an advocate or life coach to find another way to communicate. Perhaps they can have a virtual meeting with a representative and can turn off video and sound if needed. If there is a big, noisy party coming up and the person knows they cannot tolerate those either from a sensory or social perspective, they can get help to find a way to decline the invitation by text or email. If certain family members are triggering, consider spending less or no time with them.

Planning ahead is easier in terms of managing a meltdown. Someone whose emotions have risen to the level of a meltdown are unlikely to stop and go, ‘Hmm. I think I should take a nice long walk now.’ The gold standard for adults should be educating them about their individual differences and needs, and teaching them how to communicate in advance of any conflict manifesting.

The above Emotional Toolkit is still a good one for parents to be aware of, and teach their children. However, unless they also teach the children to recognize and then respond without aggression or inertia/shutdown to a rising meltdown, it may not be helpful. Once a person has lost emotional control, it is very difficult to bring them back to a state of calm. The Emotional Toolkit has great strategies for reducing stress and anxiety, but it may not be as helpful when a meltdown is at hand.”


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Co-Regulation

Co-regulation by another supportive person is reported to potentially help someone feel more secure and learn from challenges.15 Means of co-regulation can include: providing a warm and responsive relationship (recognizing cues that indicate an individual’s needs and wants, and supporting in times of stress), managing the environment to support self-regulation, buffering against stresses in the individual’s environment (promoting environmental safety, consistency, predictability, clarity), and sharing and nurturing skills in self-regulation. For more information on co-regulation, see: Co-Regulation From Birth Through Young Adulthood: A Practice Brief .


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AM HeLP Guide (Autism Mental Health Literacy Project):

With Autistic and family caregiver advisors, researchers at York University and the Centre for Addiction and Mental Health (CAMH) have developed the Mental Health Literacy Guide for Autism16. This resource provides information about autistic mental health, including experiences of, and supports related to, mental health among Autistic adults. It emphasizes the importance of societal acceptance and appreciation of autism in moving toward support and well-being.


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Summary

  • Emotional regulation refers to how one recognizes and monitors what they are thinking, and how they are feeling and acting.
  • Emotional regulation is a task required in managing the various challenges of daily life as well as stressful life circumstances.
  • To support emotional regulation, constructive strategies can be helpful.
  • Support from a mental health therapist/health care provider with an understanding of autism can help with strategies for greater emotional regulation.
  • Coping strategies and skills can be learned to help manage emotions. These strategies can help move forward in a constructive way.
  • If one is in distress or at risk of harm to self or others, call 911 for immediate help.


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References

1Rolston, A., & Llyod-Richardson, E. (n.d.). What is emotional regulation and how do we do it? Cornell Research Program on Self-Injury and Recovery. Available from: https://www.selfinjury.bctr.cornell.edu/perch/resources/what-is-emotion-regulationsinfo-brief.pdf

2Cleveland Clinic. (2023). Emotional dysregulation. Available from: https://my.clevelandclinic.org/health/symptoms/25065-emotional-dysregulation

3Samson, A. C., Huber, O. & Gross, J. J. (2012). Emotion regulation in Asperger’s syndrome and high-functioning autism. Emotion, 12(4), 659-665.

4Keating, C.T., Ichijo, E. & Cook, J.L. Autistic adults exhibit highly precise representations of others’ emotions but a reduced influence of emotion representations on emotion recognition accuracy. Scientific Reports, 13, 1-13. https://doi.org/10.1038/s41598-023-39070-0

5Gunin, G. B., Gravino, A., & Bal, V. H. (2021). Advancing mental health supports for autistic postsecondary students: A call for research. Autism in Adulthood, 3(1), 30–36. https://doi.org/10.1089/aut.2020.0044

6Cai, R. Y., Richdale, A. L., Uljarević, M., Dissanayake, C., & Samson, A. C. (2018). Emotion regulation in autism spectrum disorder: Where we are and where we need to go. Autism Research, 11(7), 962–978. https://doi.org/10.1002/aur.1968

7Vohra, R., Madhavan, S., & Sambamoorthi, U. (2016). Emergency department use among adults with autism spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 46(4), 1441–1454. https://doi.org/10.1007/s10803-015-2692-2

8Poquérusse, J., Pastore, L., Dellantonio, S., & Esposito, G. (2018). Alexithymia and autism spectrum disorder: A complex relationship. Frontiers in Psychology, 9, 1-10. https://doi.org/10.3389/fpsyg.2018.01196

9Dell'Osso, L., Massoni, L., Battaglini, S., De Felice, C., Nardi, B., Amatori, G., Cremone, I. M., & Carpita, B. (2023). Emotional dysregulation as a part of the autism spectrum continuum: A literature review from late childhood to adulthood. Frontiers in Psychiatry, 14, 1-8.https://doi.org/10.3389/fpsyt.2023.1234518

10Lewis, L. F., & Stevens, K. (2023). The lived experience of meltdowns for autistic adults. Autism, 27(6), 1817–1825. https://doi.org/10.1177/13623613221145783

11Belek, B. (2019). Articulating sensory sensitivity: From bodies with autism to autistic bodies. Medical Anthropology, 38(1), 30–43. https://doi.org/10.1080/01459740.2018.1460750

12Keenan, E. G., Gurba, A. N., Mahaffey, B., Kappenberg, C. F., & Lerner, M. D. (2024). Leveling up dialectical behavior therapy for autistic individuals with emotion dysregulation: Clinical and personal insights. Autism in Adulthood, 6(1), 1–8.

13Spek, A. A., van Ham, N. C., & Nyklíček, I. (2013). Mindfulness-based therapy in adults with an autism spectrum disorder: a randomized controlled trial. Research in Developmental Disabilities, 34(1), 246–253. https://doi.org/10.1016/j.ridd.2012.08.009

14Attwood, T. (2012). The Emotional Toolbox. Available from: https://www.autismontario.com/node/440

15Murray, D.W., Rosanbalm, K., Christopoulos, C., & Hamoudi, A. (2015). Self-regulation and toxic stress report 1: Foundations for understanding self-regulation from an applied perspective. Available from: https://www.acf.hhs.gov/opre/report/self-regulation-and-toxic-stress-foundations-understanding-self-regulation-applied

16Autism Mental Health Literacy Project (AM-HeLP) Group. (2021). Mental Health Literacy Guide for Autism (1st digital Ed.). Retrieved from https://www.yorku.ca/health/lab/ddmh/am-help/


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Photo by Samson Katt on Pexels

 

 

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