PALS Meeting Minutes
December 20, 2023 9:30 a.m.
Virtual Meeting using Zoom
Open Forum
Open Forum is an opportunity for participants to come together and discuss a variety of topics, offer resources, and ask questions related to special education.
Note: We had a quick meet-up on the 20th sharing experiences and resources for topics that were shared via email.
Autistic Burnout
Although widely accepted within the neurodivergent community, formal studies of Autistic Burnout are limited, but increasing. The National Autism Society (NAS) in Great Britain describes Autistic Burnout as:
"a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus."
The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) in Portland, Oregon is home to a pilot study on autistic burnout and suicide behavior. They aim to "begin characterizing autistic burnout and to take the first steps in developing a way to measure it." Currently AAPIRE has completed their first goal of the study; characterizing autistic burnout. These studies include:
Autistic burnout and the costs of coping and passing. Invited talk for pre-meeting on mental health. International Society for Autism Research, Montreal.
Autistic burnout and the costs of coping and passing. Seattle Children’s Hospital Autism 200 Series invited lecture.
“Having all of your internal resources exhausted beyond measure and being left with no clean-up crew:” Defining autistic burnout. Autism in Adulthood. 2:2
AUTISTIC BURNOUT: In Conversation with Transforming Autism – Dora Raymaker Interview on the findings
NAS indicates that within studies conducted people described some of the stressors they face in life as:
Masking their autistic traits, for example by suppressing autistic behaviours, pretending to be non-autistic, or working very hard to act in a non-autistic way.
Difficult or unreachable expectations from family, school, work, or society in general.
Stress from living in a world not set up to accommodate autistic people, for example managing the stress of having to be in noisy environments.
Life-changes and transitions that are stressful for anyone, for example transitioning from school to work, experiencing a mental health crisis, or the death of someone close.
They also described barriers to receiving relief:
Gaslighting or dismissal when attempting to describe the autistic burnout, for example being told that everyone has these experiences, that they just need to try harder, or that they are making it up.
Poor boundaries or self-advocacy with respect to saying no, taking a break, or asking for help. This may be due to trauma, fear, lack of assistance in learning how, and a history of negative responses from others when they tried.
Inability to take a break from stress that is so pervasive (“How do you take a break from life?”).
Insufficient external resources and supports, for example inadequate disability services, lack of useful social support.
Participants also described how they have found relief or preventative measures that worked for them:
Acceptance and support – interacting with others who could accept them for who they were, without any need to masking or pretend. This could be one-on-one with family members or friends; on a community level of groups with accepting cultures; or on a peer level, especially finding other autistic people who could validate their experiences and offer information and emotional/social support from lived experience.
Being autistic – attending to autistic needs like stimming and spending time with intense interests and comfort items, unmasking, using autistic strengths or doing things in an autistic way.
Formal supports – receiving reasonable adjustments at school or work, physical support like someone to provide groceries, and mental health support.
Reduced load – taking time off, more breaks, reducing social activity or other types of more stressful activities.
Self-advocacy and health – learning how to set healthy boundaries and expectations from others, and what to do when others aren’t respecting boundaries. Learning how to ask for help in a way others might be responsive to, and leading as healthy a lifestyle as possible (for example participants described how exercising, sleeping, eating well, and doing things that made them happy helped them out of autistic burnout once they had enough energy to do them).
Self-knowledge – learning how to recognise and act on the early signs of autistic burnout (for example by cancelling social plans to have more rest), having an autism diagnosis, and understanding one’s own patterns of behaviour and feelings.
Here are more articles on the subject o Autistic Burnout:
NOTE: The mention of Autist Burnout lead to the mention of the book The Highly Sensitive Child
Recommended Reading: The Highly Sensitive Child
Based on years in the field of psychotherapy and research on child temperament, Elaine N. Aron, Ph.D.'s book, The Highly Sensitive Child was published in 2002. From the publisher:
"The Highly Sensitive Child shows how HSCs are born deeply reflective, sensitive to the subtle, and easily overwhelmed. These qualities can make for smart, conscientious, creative children, but with the wrong parenting or schooling, they can become unusually shy or timid, or begin acting out. Few parents and teachers understand where this behavior comes from-and as a result, HSCs are often mislabeled as overly inhibited, fearful, or "fussy,"or classified as "problem children" (and in some cases, misdiagnosed with disorders such as Attention Deficit Disorder). But raised with proper understanding and care, HSCs are no more prone to these problems than nonsensitive children and can grow up to be happy, healthy, well-adjusted adults.
In this pioneering work, parents will find helpful self-tests and case studies to help them understand their HSC, along with thorough adviceon:
- The challenges of raising an highly sensitive child
- The four keys to successfully parenting an HSC
- How to soothe highly sensitive infants
- Helping sensitive children survive in a not-so-sensitive world
- Making school and friendships enjoyable
With chapters addressing the needs of specific age groups, from newborns through teens," The Highly Sensitive Child delivers warmhearted, timely information for parents, teachers, and the sensitive children in their lives.
Emotional Dysregulation
The Cleveland Clinic best describes emotional dysregulation as:
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.
Psychology Today cited the 2004 Gratz & Roemer study definition emotional dysregulation as having four main factors:
A lack of awareness, understanding, and acceptance of emotions
A lack of adaptive strategies for regulating emotions (the intensity and/or duration)
An unwillingness to experience emotional distress whilst pursuing desired goals
An inability to engage in goal-directed behaviors when experiencing distress
Utilizing these four factors, in 2017 D'Agostine suggested that "avoidance, rumination, denial, emotion suppression, aggression, and venting" were examples of emotional dysregulation.
Recommendations and strategies for health emotional regulation include:
Exercise: Different forms of exercise, such as cycling and running, have been shown to help regulate emotion (Bernstein & McNally, 2018).
Deep Breathing: When we are anxious, our breathing becomes quicker and shallower. Research has shown that deliberately deepening and slowing the breath can improve mood (Jerath et al., 2015).
Yoga: Yoga combines physical movement with mindful awareness.
Acceptance: If you’re feeling sad, for example, it can be helpful to remember that sadness is a normal emotion that everyone has. This can help you judge yourself less for the emotions you have.
Awareness: Cultivating awareness of your inner experience can help you recognize when and why you feel certain ways.
Rejection Sensitive Dysphoria
According to an article in Pyschology Today (January 2023), Rejection Sensitive Dysphoria (RSD) can be described as:
People with RSD have such a strong emotional reaction to negative judgments, exclusion, or criticism from others that it sends them into a mental tailspin, leading to rumination and the pit-of-the-stomach malaise that won't let them move forward with their day. They feel like failures, disproportionate to what has actually occurred. They may feel rage and want to lash out. They often exaggerate how people are against them, or how much people dislike them, or they carry long-term shame.
Although RSD is not currently an official diagnosis listed in the Diagnostic and Statistical Manual of Disorders (DSM-5) it is a constellation of symptoms that are often, but not always, associated with other conditions. In-depth research is just now taking shape.
People with RSD have such a strong emotional reaction to negative judgments, exclusion, or criticism from others that it sends them into a mental tailspin, leading to rumination and the pit-of-the-stomach malaise that won't let them move forward with their day. They feel like failures, disproportionate to what has actually occurred. They may feel rage and want to lash out. They often exaggerate how people are against them, or how much people dislike them, or they carry long-term shame.
Additional resources on Emotional Dysregulation and Rejection Sensitive Dysphoria:
An ADHD Guide to Emotional Dysregulation and Rejection Sensitive Dysphoria (w/ William Dodson, M.D.)
An ADHD Guide to Emotional Dysregulation and Rejection Sensitive Dysphoria (w/ William Dodson, M.D.)
Next Meeting: January 31, 2024 9:30 a.m. Virtual Meeting using Zoom.
**Log-in and Password for this and all upcoming meetings will be sent in all upcoming newsletters. Become a subscriber in the footer of this web page.
SPECIAL NOTE
All meetings are held virtually.
