Many people think that anxiety is just that nervous feeling in the stomach before a job interview, but it is not. It impacts our lives much more than that. We sometimes hear people say that “everyone has a little anxiety,” which is true, since anxiety is essential for human survival at mild to moderate levels. However, for autistic people anxiety may exist constantly, and with a greater intensity, so it can affect sleep, concentration, and the performance of common everyday tasks.
Anxiety is the body’s physical response to a perceived threat or threat. Recent estimates suggest that lifetime rates of anxiety are between 42% and 79% for autistic people of all ages Hwang, et al (2019) and Kent, & Simonoff, (2017). Anxiety is the most common co-occurrence in autism, but in conjunction with the need to continually mask our traits, it can lead to autistic burnout or burnout. Autistic people, we may have difficulty identifying anxiety and exhaustion before reaching burnout, due to interoception difficulties or alexithymia (difficulty recognizing and labeling emotions).
A greater number of factors perceived as threatening, e.g. intolerance to uncertainty or certain sounds/lights being painful
Repetitive thinking style (rumination)
Capability, bullying or prejudice
Alexithymia and interoception difficulties
Masking is exhausting, which can increase anxiety
Sensory or emotional overload
Calming activities may be unavailable or not allowed
Processing speed can lead to frustrated communication
Challenges in socialization and friendships
Somatic complaints, such as headaches, stomachaches, tightness in the chest.
Restlessness, or feeling tense and nervous
Panic Attacks
Quick breathing
Heat and cold waves, and racing heart or breathing
Catastrophizing: automatically assuming the worst possible outcome
More frequent negative/intrusive automatic thoughts
Obsessive and constant analysis of past situations/conversations or Overthinking
Fear and excessive worry
Increased need for control and routine
Increase in the amount and intensity of meltdowns and shutdowns
More pronounced and unhealthy obsession with special interests
Feelings of anger or sadness if you cannot concentrate on the special interest
Decreased executive functions, such as greater difficulty cleaning the house or planning
Increased stereotyping (sometimes to the point of injury)
Becoming less communicative
Avoid certain tasks and events
Feeling of constant concern
Waking up exhausted and dreamless, which indicates poor sleep
Difficulty in relaxing
Increased forgetfulness of daily self-care routine such as bathing, eating, etc.
What works for YOU: All autistic people are different, so do what works for YOU. Also remember that it is okay to feel anxiety, and that it is totally normal.
Eat a healthy diet and get regular physical activity, if you can.
Get involved in your special interests! These help you gain energy and relax.
Stereotyping: do stereotyping! Stereotyping helps us regulate our body sensory and emotional levels, and prevents seizures.
Develop a routine: having control over your own routine helps decrease unexpected changes that cause a lot of anxiety. Have calendars, diaries, charts to visualize your days
Interoception activities: breathing training or meditation can help. Body awareness activities (unless you are overwhelmed). Engage in interoception activities daily (2-3 times a day) to help you understand how you feel.
Positive interpersonal connections: they are one of the greatest protective factors in terms of mental health and well-being. People who care about us who treat us with respect, kindness and compassion can minimize anxiety and uncertainty. We need friends! However, decrease non-positive social interaction.
Environmental and sensory strategies: Take the time to find out what sensory information you really like and what helps you calm down. Develop strategies to have these accessible during a typical day and in anxious situations, such as a stim toy, or music. Avoid sensory stimuli that will cause overload. You can use forms of protection such as noise-canceling headphones with your own music, or wear a favorite scent on your clothes when you are away from home.
Building self-esteem: when we matter to ourselves and to others, we more easily accept our experiences as valid and real. This leads us to care less about what other people think, and we have better self-esteem.
Department for Education, South Australia, (2019) Anxiety health support for children and young people. https://www.education.sa.gov.au/schools-and-educators/health-safety-andwellbeing/specific-conditions-and-needs/anxiety-health-support-children-and-young-people
Hwang, Y. I., Arnold, S., Srasuebkul, P., & Trollor, J. (2020). Understanding anxiety in adults on the autism spectrum: An investigation of its relationship with intolerance of uncertainty, sensory sensitivities and repetitive behaviours. Autism, 24(2), 411-422.
Kent, R., & Simonoff, E. (2017). Prevalence of anxiety in autism spectrum disorders. Anxiety in children and adolescents with autism spectrum disorder, 5-32.
Jenkinson, R., Milne, E., & Thompson, A. (2020). The relationship between intolerance of uncertainty and anxiety in autism: A systematic literature review and meta-analysis. Autism, 24(8), 1933-1944.
Burnout is intense physical, mental or emotional exhaustion, often accompanied by a loss of abilities in autistics. It can last for a few months, but some autistics report feeling it for years. Being autistic can increase the likelihood of fatigue and burnout, due to the pressures of social situations and sensory overload. If you are experiencing fatigue or burnout, managing your energy levels is essential.
It was only discovered a few years ago, after reporting by several autistic people to the scientific community in a perfect example of how we need more autistic voices working with science.
Burnout is the result of intense emotional overload (acute) or the cumulative result of years of masking and suppressing who we are in order to be accepted (chronic).
It was only discovered a few years ago after several autistic people reported it to the scientific community in a perfect example of how we need more autistic voices working with science.
Burnout is the result of intense emotional overload (acute) or the cumulative result of years of masking and suppressing who we are in order to be accepted (chronic).
Continuous sensory overload
Too many social situations without rest
Masking your autistic traits
Suppress stereotypes
Feeling of not meeting other people’s / society’s expectations of them
Post-diagnosis Burnout, due to a change in outlook on life and all the new information you have to process
Major changes in routine, such as the pandemic
Feeling a “fog” in your mind or spending more time in your world (zoning out)
Difficulty forming thoughts; difficulty concentrating
Loss of interest, motivation and creativity
Increased sensitivity to routine changes or alterations
Difficulty in performing self-care routines, such as bathing or brushing teeth
Increased sensory sensitivity. Increased likelihood of having an overload or meltdown
Physical pain, such as headache
Loss of speech or diminished abilities
Increased difficulty in masking strokes and increased stimming/stereotyping (“Looks ‘more autistic'”)
Of course, all autistics are different, and therefore the manifestation of burnout will be different.
If you are going through the same thing: be kind to yourself. Ask for help. You are not alone.
‘Autistic regression’, as it is called by professionals, involves a decrease in acquired skills of the child or adult, and can be a part or a symptom of burnout. It can also be used in young children for when speech or other skills are lost with the increased visibility of autism traits (greater difficulties in meeting the specific demands of the age group).
Seek support from a psychologist: a good professional who can support our mental health is a must. Sometimes in burnout we have poor executive function skills, and therefore it may be important to have outside support, preferably from those who have experience with Autism.
Rest: Use the spoon theory to make sure you have enough rest for the work you will have to do. Take a short vacation. Spoon theory is a system used to set manageable limits on your energy levels so that you don’t run out. Remember that autistic people’s energy has a limit.
Special interests: Engage in interests and activities that make you feel re-energized and rested. Try to make sure you balance your activities and energy throughout the day or week to try to manage anxiety and energy. These help you gain energy and motivation, and, according to autistic people, is the best way to recover from burnout.
Routine: Develop a new routine if it has been disrupted. Use diaries and notebooks, or calendars to have a little more control over your/your child’s routine.
Reduce expectations: lower the expectations and pressure you have around you, or your child. Expectation can cause extreme anxiety. Be realistic and move forward step by step, without pressure.
At work: talk to your boss and try to show that the amount of work is impacting your energy, and ask them to come up with ways to manage the workload better. Also try to take breaks during the work day to stereotype and regulate yourself, and take whatever vacation time you have available. If they know about autism in the workplace, ask for accommodations, such as only joining social occasions if you feel comfortable, masking less during the workday (or only with clients), having a space to self-regulate.
Learn to say no: Feel free to manage your energy, and say no to situations that you know will drain too much of what little energy you have. Lowering expectations and obligations helps you manage and renew your energy.
Account for energy: during the day we have quite large energy expenditures, such as for socializing. Organize your day in such a way as to ensure that you don’t expend more energy than you have. Schedule time to regulate yourself, do stereotyping, concentrate on your interests, or rest to regain energy.
Higgins JM, Arnold SR, Weise J, Pellicano E, Trollor JN. Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout. Autism. 2021 Jun 4:13623613211019858. doi: 10.1177/13623613211019858. Epub ahead of print. PMID: 34088219.
Autistic burnout, explained – Spectrum News -https://www.spectrumnews.org/news/autistic-burnout-explained/
Dora M. Raymaker, Alan R. Teo, Nicole A. Steckler, Brandy Lentz, Mirah Scharer, Austin Delos Santos, Steven K. Kapp, Morrigan Hunter, Andee Joyce, and Christina Nicolaidis. “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout