Caring for the Carer
When caring for an Autistic family member, carer fatigue and burnout are critical, yet often overlooked, issues within the family system. Many families are doing it tough, constantly advocating for support, navigating complex systems like education, healthcare, and disability services, and shouldering much of the emotional and practical scaffolding required to meet their child’s needs.
Parents and carers often describe setting their own needs aside to ensure their child is supported. The hours of research, phone calls, funding applications, school meetings, and emotional containment, it all adds up.
The Weight of Advocacy
The emotional toll of caregiving is gradually gaining more public recognition, including through recent viral posts and open letters written to parents of Autistic and neurodivergent children. While many carers found such reflections validating and relatable, others—particularly members of the Autistic community—expressed concern about the framing of parenting experiences in ways that may unintentionally position Autistic children as the source of struggle, rather than highlighting the systemic barriers that create those challenges.
These conversations reflect a common and complex reality: caregiving often involves deep exhaustion and unwavering commitment, especially when navigating systems not built with Autistic people in mind. As a clinician and a proud parent and carer to two wonderful neurodivergent children, I often hear caregivers express quiet, honest moments of fatigue—words that echo across therapy rooms and support groups alike.
It raises a vital question:
How do we know when we’re pouring from an empty cup? And how do we mend that cup, so we can continue to show up—for our children and for ourselves?
Understanding Carer Fatigue and Burnout
Carer fatigue and burnout are related but distinct concepts frequently discussed in research (Tang et al., 2025). Both occur when caregiving demands exceed a carer’s emotional, physical, or psychological resources. The most significant predictor is a perceived lack of control (Sánchez Amate & Luque de la Rosa, 2024), closely followed by the complexity of the care recipient’s support needs (Tang et al., 2025).
What is Carer Fatigue?
Carer fatigue is the early onset of stress symptoms that develop from long-term caregiving. Triggers can include:
System-level challenges (e.g., school policies, resource limitations)
Family stressors (e.g., conflicting needs, financial strain)
Vicarious trauma or distress from witnessing your child’s struggles
Signs of carer fatigue may include:
Persistent tiredness, even after rest
Changes in sleep or appetite
Skipping meals, appointments, or self-care routines
Emotional reactivity or difficulty recovering from stress
What is Carer Burnout?
Carer burnout is a more advanced stage of fatigue, where stress becomes chronic and debilitating. It’s marked by:
Exhaustion that doesn’t improve with rest
Feelings of helplessness, detachment, or isolation
Anxiety, depression, or signs of trauma (Carmassi et al., 2020)
Withdrawal from support networks or activities
Guilt and shame about struggling
Self-neglect
Carer burnout can significantly affect your ability to support your family and yourself. Recognising the early signs and seeking help is not a weakness, it’s a protective step.
Management
Health Services
Recognising the signs of carer’s burnout and fatigue is crucial in ensuring caregivers can find the appropriate support for both them and their care recipients. Consulting with your GP to monitor your health and developing a personal care plan can be a good preventative measure. Discussion with your GP may also include discussing medications that could support your wellbeing and mental health. Finding a neurodiversity-affirming GP who understands the needs of our families and is supportive is highly recommended (although not always easy!).
School
Recent research indicates that Autism-caregivers’ stress is reduced when schools and support services are perceived as supportive (Fong et al., 2023). The higher the satisfaction with these services, the more likely caregivers experienced increased emotional well-being. If you aren’t satisfied or have concerns with the support being provided by your child’s school, we recommend working with your child’s support team to identify and communicate your child’s needs and collaborate regarding reasonable accommodations and support strategies and provide the school with opportunities to further upskill (https://www.kiddclinic.com.au/resources) or request specialised involvement. Public and independent schools can access SSEND.
If you want to know how to better utilise your supports at The Kidd Clinic, we recommend checking out our other blog post, ‘Support for Parents’.
Carer Services
For carer-specific support, WA.gov.au has a list of services you can access.
For practical support, you can access Carer’s WA for emergency respite, respite care, carer coaching, group sessions and individual sessions.
Carer’s Gateway also offers tailored support packages accessible through their hotline (1800 422 737). They will take your details and arrange for a support staff member to contact you for a needs assessment. Through this tailored support package, you can access respite, in-home services, and counselling designed to bolster caregivers’ resources and allow you time to do things you’ve been missing, like catching up with friends or engaging in self-care.
Counselling
For individual counselling, you can self-refer free of charge to Helping Minds, an organisation designed to support friends and family of those with ongoing mental health difficulties. You can self-refer via their ‘Contact Us’ page.
Alternatively, you can access psychological support via a Mental Health Care Plan through your GP. Most of our psychologists at The Kidd Clinic provide counselling to parents/ carers. We have also developed a neurodivergent burnout questionnaire to assess the needs and supports required of Autistic and/ or ADHD parents.
If you are experiencing emotional distress or would like someone to talk to, Carers WA also provides free counselling to carers. You can reach their counselling team by calling 1800 007 332.
Finally, if you have any concerns about what was raised in this blog, please do not hesitate to reach out to your child’s clinician, your GP or Lifeline on 13 11 14.
References
Carmassi, C., Dell’Oste, V., Foghi, C., Bertelloni, C. A., Conti, E., Calderoni, S., Battini, R., & Dell’Osso, L. (2020). Post-traumatic stress reactions in caregivers of children and adolescents/young adults with severe diseases: A systematic review of risk and protective factors. International Journal of Environmental Research and Public Health, 18(1), 189. https://doi.org/10.3390/ijerph18010189
Fong, V. C., McLaughlin, J., & Schneider, M. (2023). “We are exhausted, worn out, and broken”: Understanding the impact of service satisfaction on caregiver well-being. Autism Research. https://doi.org/10.1002/aur.3024
Sánchez Amate, J. J., & Luque de la Rosa, A. (2024). The effect of autism spectrum disorder on family mental health: Challenges, emotional impact, and coping strategies. Brain Sciences, 14(11), 1116. https://doi.org/10.3390/brainsci14111116
Tang, C. S-K., Yu, I. C-Y., Ng, K-H., & Kwok, H. S-H. (2025). An ecological approach to caregiver burnout: Interplay of self-stigma, family resilience, and caregiver needs among mothers of children with special needs. Frontiers in Psychology, 16. https://doi.org/10.3389/fpsyg.2025.1518136
Warreman, E. B., Lloyd, S. E., Nooteboom, L. A., Leenen, P. J. M., Terry, M. B., Hoek, H. W., van Rossum, E. F. C., Vermeiren, R. R. J. M., & Ester, W. A. (2023). Psychological, behavioural, and physical aspects of caregiver strain in autism-caregivers: A cohort study. EClinicalMedicine, 61, 102211. https://doi.org/10.1016/j.eclinm.2023.102211
