Burnout in the autism community

The end of year can be challenging at the best of times, but for some of us, the stress, irritability and exhaustion we experience during this period might be a sign of something more serious. Although awareness of burnout is growing in schools, workplaces and the wider community, it still remains particularly tricky to identify and differentiate from normal end-of-year fatigue.

Both autistic people and parents and carers of people with autism are more susceptible to developing burnout than the general population. There are a range of factors that contribute to this, from long busy periods without adequate breaks, juggling too many responsibilities or simply navigating a neurotypical and able-bodied world without the necessary accommodations and supports.

In this post, we’ll discuss the similarities and differences between autistic burnout and carer’s burnout can look like and how you can take steps to fully recover:

• What is autistic burnout?
• What is carer’s burnout?
• What about burnout as an autistic carer?
• Prevention and recovery
• Further resources

What is autistic burnout?

Although it shares similar signs and triggers to burnout experienced by neurotypical people, autistic burnout is often more severe and long-lasting. Yet, despite being such a serious situation, autism research has only begun to identify and investigate autistic burnout in the last five years. Some common signs of autistic burnout are:

• Extreme physical exhaustion (e.g., unable to get out of bed)
• Extreme mental and/or emotional exhaustion (greater difficulty managing emotions, outbursts of sadness or anger)
• Increased engagement in repetitive behaviours
• Decreased tolerance of change and sensory input
• A loss of skills (e.g., verbal communication, independent living capabilities)
• Severe anxiety and/or depression
• Suicidal thoughts and/or behaviours

Autistic burnout and burnout experienced by neurotypical people have some shared causes, such as an unmanageable workload or number of responsibilities. However, autistic burnout has some additional and unique causes that people on the spectrum and those around them should be aware of:

• Being forced or feeling forced to mask/camouflage autistic traits (e.g., stimming) and adopt ‘neurotypical’ behaviours (e.g. maintaining eye contact).
• Prolonged sensory overstimulation (e.g., a very noisy daily commute on public transport, working or going to school in a space with overwhelming sensory stimuli).
• Difficulties with day-to-day executive functioning and completing everyday tasks.
• Navigating big and/or sudden periods of change without adequate support

Just as no two people with autism are the same, the experience of autistic burnout is different for every individual. This also means the steps a person and their support network need to take to recover from autistic burnout are unique to that individual. Some research has indicated that the older an autistic person is, the harder and longer the recovery process becomes.

What is carer's burnout?

For carers, burnout is the physical and emotional exhaustion that results from navigating excessive and prolonged periods of stress. Many people are also carers by necessity, often thrust into a role that can last years, decades or even a lifetime with no preparation or warning. Here are some common signs that you or a carer you know might be experiencing burnout:

• Fatigue and exhaustion (physical and mental)
• Feelings of helplessness, cynicism, negativity, guilt or shame
• Feeling unable to complete tasks or provide support at their usual standard
• Feeling doubtful about their skills and ability to support others
• Headaches, tension, lowered immunity and increased susceptibility to illness
• Reduced motivation, satisfaction or sense of accomplishment
• Changes to appetite or sleeping patterns
• Use of alcohol and drugs as a coping mechanism
• Lossof motivation
• Social withdrawal

Carer’s burnout can also have unique causes that caregivers themselves may be unaware are impacting them:

• Little to no preparation, support or awareness around how to be a carer and support one’s own health and wellbeing at the same time.
• Minimisation, dismissal or neglect of a carer’s health, wellbeing and needs.
• Exclusion from decisions relating to the support of the person they’re caring for, leading to feelings of confusion, unsure or unvalued.
• Financial pressures such as the cost of caring or reducing or stopping paid work.
• Relationship changes (e.g. decreased socialising due to carer responsibilities).
• A lack of understanding, empathy and support from family, friends, employers and the wider community.

Carers can sometimes struggle to identify that what they’re experiencing is burnout, as well as support services that appreciate their unique needs and challenges. Informal support can also be difficult to access, as family, friends, colleagues and others may not appreciate the physical, emotional and social difficulties involved with caregiving at times.

What about burnout as an autistic carer?

Contrary to popular belief, many people on the autism spectrum are also carers, often providing unpaid support to a family member or friend. Although being a carer can be very rewarding and positive for both autistic and neurotypical people, some of the challenges of being a carer can be compounded for people on the autism spectrum.

Everyone needs a support network around them to help celebrate successes and navigate challenges. Connecting with autistic and neurotypical people that respect and value you can provide you with this invaluable support. They can also boost yourself-esteem and encourage you to take pride in your identity.

Many autistic people also thrive as a result of external support offered by professionals, peers, support groups and other areas. If you’re not already receiving external support, it’s worth considering what your options are. Discover what good support can look like and why it’s so important in the video below or in these articles on Autism: What Next?

Prevention and recovery

Prevention

The ultimate goal in terms of burnout is to prevent it before it even begins. This is only possible when an individual has a strong understanding of burnout and its causes and impacts. Here are some steps you can take to prevent burnout:

Identify

• Signs that you’re approaching burnout (e.g., experiencing tunnel vision, feeling disconnected from your body, increased apathy and irritability).
• Situations that might trigger burnout (e.g., busy days of socialising without days in between to recover, taking on additional carer responsibilities without support).
• Where you need to establish boundaries and what those boundaries should be (e.g.. at work, in your relationships). Remember, it’s okay to say ‘no.’
• Gaps in your knowledge that might cause you to overwork or neglect your needs (e.g.a better understanding of the challenges autistic people can experience a better understanding of what can be reasonably expected from you as a carer).
• Your strengths, limitations and limits both professionally and personally.

Investigate

• Information and resources that can help you better understand yourself or the person you’re caring for (e.g. Autism: What Next?, Little Dreamers, Carer Gateway).
• Spaces and communication strategies that allow you to establish boundaries, manage conflict and share your thoughts and feelings effectively and respectfully.(e.g., talking to loved ones, attending support groups, seeking professional support). It’s important to share what you’re going through rather than bottling it up.
• Hobbies and activities that can distract, entertain and provide you with a sense of purpose.

Implement

• Accommodations that will support you in preventing burnout independently (e.g., working from home to avoid a noisy commute, schedule days to rest, relax and recover after busy periods).
• Boundaries that protect your needs and feelings, as well as steps to follow if they aren’t respected.
• Plans and procedures to effectively handle tough times if you can anticipate them.
• Healthy relationships that lift you up and allow you to be yourself.
• Strategies to help you relax and/or regulate your emotions as well as activities to help you wind down and recover.  
• Self-care strategies to maintain good health and wellbeing day-to-day. Although self-care is not a substitute for accommodations, boundaries and professional support, it can complement their success.

Recovery

Of course, preventing burnout is much easier said than done. AS our understanding of autism, burnout and mental health is still limited, identifying and preventing burnout before it escalates remains difficult. Recovery from something as serious and long-lasting as burnout can also seem all too difficult, particularly when an individual or their support network doesn’t have the knowledge or resources to do so.

 Breaking steps to burnout recovery down into short-term and long-term actions can make the process seem less overwhelming:

Short-term recovery

• Remove yourself from the situation or circumstances that have triggered the burnout as soon as possible. This might be returning to your home or hotel room to rest alone after a day of unpredictable social interactions at a party.
• Prioritise time sleeping, resting and spending time engaging with special interests.
• Use respite, leave benefits or other services to provide yourself with a break.
• Reach out to family members, friends and colleagues that can take on your immediate responsibilities.
• Cancel plans or events that would cause burnout to escalate.

Long-term recovery

• Adjust your routine and responsibilities so you’re not taking on more than you’re capable of doing. This could be formal accommodations at work or reaching out to others to take on caring responsibilities.
• Maintain a healthy diet, exercise regime and sleep schedule.
• Consider how ‘unmasking’ (not adopting ‘neurotypical’ behaviours) can help alleviate anxiety and fatigue (e.g., not forcing yourself to make sustained eye contact, allowing yourself to engage in safe stimming).
• Find people you can share your responsibilities and feelings with. Attending a support group or more informal social events with like-minded people can also provide you with a helpful break.
• Refer to the prevention tips mentioned above to stop burnout from happening again.

Further resources

Although burnout is tricky to navigate, there are lots of autism and carer-specific resources that can help. Check out our other articles and videos around looking after yourself:

• A guide to self-care for caregivers
• Self-care on the spectrum | Michael Theo
• Looking after yourself: autistic adults and parents/carers
• Therapies/supports

You can also visit these external websites:

• Carers Australia
• Little Dreamers Australia (young carers)