Many people think that anxiety is just that nervous feeling in the stomach before a job interview, but it’s not. It impacts our lives far more than that. We sometimes hear people say that ‘everyone has a bit of anxiety’, which is true, since anxiety is essential for human survival, at mild to moderate levels. However, for autistic people, anxiety can exist constantly and with greater intensity, which can affect sleep, concentration and the performance of common day-to-day tasks.
Anxiety is the body’s physical response to a threat or perceived 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 together with the need to continually mask our traits, it can lead to autistic exhaustion or burnout. Autistic people may have difficulty identifying anxiety and exhaustion before they reach burnout, due to difficulties with interoception or alexithymia (difficulty recognising and labelling emotions).
What works for YOU: All autistic people are different, so do what works for YOU. Also remember that it’s okay to feel anxious, and that it’s totally normal.
Eat a healthy diet and do regular physical activity if you can.
Get involved in your interests! These help us gain energy and relax.
Stimming: do stimming! It helps us regulate our body on a sensory and emotional level, and prevents crises.
Develop a routine: having control over your own routine helps to reduce unexpected changes that cause a lot of anxiety. Have calendars, diaries, charts to visualise your days.
Interoception activities: breathing training or meditation can help. Body awareness activities (unless you’re overwhelmed). Engage in interoception activities on a daily basis (2-3 times a day) to help you understand how you feel.
Positive interpersonal connections: these 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 minimise anxiety and uncertainty. We need friends! However, decrease non-positive social interaction.
Environmental and sensory strategies: Take some time to find out what sensory information you really like and helps to calm you 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-cancelling headphones with your own music or wear a favourite perfume on your clothes when you’re out and about.
Building self-esteem: when we are important to ourselves and others, we more easily accept our experiences as valid and real. This leads us to worry 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.
Autistic burnout is an intense physical, mental or emotional exhaustion, often accompanied by a loss of abilities in autistic people. It can last a few months, but some autistic people say they have felt the impact 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 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).
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 in science.
Constant sensory overload
Too many social situations without rest
Mask autistic traits
Supress stimming
Feeling of not living up to other people’s/society’s expectations of them.
Post-diagnosis burnout, due to a change in outlook on life and all the new information they have to process.
Major changes in routine, such as the pandemic.
Feeling brain fog or spending more time zoning out.
Difficulty forming thoughts; difficulty concentrating.
Loss of interest, motivation and creativity.
Greater sensitivity to changes in routine
Difficulty with self-care routines, such as bathing or brushing teeth.
Increased sensory sensitivity. Increased likelihood of overload or meltdown.
Physical pain, such as a headache.
Loss of speech or losing capacities you had before.
Greater difficulty in masking traits and increased stimming/stereotyping (‘Looks “more autistic”’).
Of course, all autistic people are different, and therefore the manifestation of burnout will be different. If you’re going through the same thing: be kind to yourself. Ask for help. You’re not alone. ‘Autistic regression’, as it is called by professionals, implies a decline in the child’s or adult’s acquired abilities, and can be a part or symptom of burnout. It can also be used in young children when speech or other skills are lost with the greater visibility of autistic 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 essential. Sometimes in burnout we have little executive function capacity, so it can be important to have external support, preferably from someone who has experience of autism.
Rest: Use the spoon theory to make sure you have enough rest for the work you have to do. Take a short holiday. The spoon theory is a system used to set manageable limits on your energy levels so that you don’t burn out. Remember that autistic people’s energy has a limit.
Engage with your interests: Get involved in interests and activities that make you feel re-energised and rested. Try to ensure that you balance your activities and energy throughout the day or week to try to manage anxiety and energy. These help us gain energy and motivation, and according to autistic people, it’s 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 routine/your child’s routine.
Reduce expectations: reduce the expectations and pressure you have around yourself or your child. Expectations 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 having an impact on your energy, and ask them to find ways to manage the workload better. Also try to take breaks during the working day to stereotype and regulate yourself, and take any holidays 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 working day (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 the little energy you have. Lowering expectations and obligations helps you manage and renew your energy.
Account for energy: during the day we spend a lot of energy, for example socialising. Organise your day to ensure that you don’t use more energy than you have. Schedule time to regulate yourself, do stereotyping, concentrate on your interests or rest to recover 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
If you need help or want to talk to other autistic adults, we have support groups and a discord channel with various topics. See how we can support you.
