If you're a parent or carer of a child who's autistic, the odds are you're spinning more plates than the average person. The emotional, physical and logistical demands stack up, often without the kind of support you need. It can leave you exhausted and wondering if things will ever improve.
Author
- Trevor Mazzucchelli
Associate Professor of Clinical Psychology, Curtin University
Every child is different, and every day can bring new challenges. Some moments are beautiful. Some are overwhelming. Some end in tears and frustration. Just when you think you're in a routine that works or made some headway, everything can change again.
As a clinical psychologist, this is what parents of autistic children tell me. As a parent of an autistic child, I too experience some of these stresses.
In fact, parents of autistic children have much higher levels of stress than parents of children with other disabilities.
What is autism?
Autism, or autism spectrum disorder , is a developmental condition that affects how a person communicates, interacts with others, and makes sense of the world around them.
It involves a wide range of traits and abilities. But it often involves difficulties with interacting and communicating socially, such as understanding body language or holding a conversation, as well as patterns of restricted or repetitive behaviour.
Autism is usually diagnosed in early childhood . While every child's experience is unique, it can influence their behaviour, learning and daily routines in ways that affect the whole family.
For parents, the impact is often intense. This is not just about managing meltdowns or navigating therapy waitlists. The stress can affect everything from mental health, relationships, finances and the ability to cope day-to-day.
It's an incredibly tough gig for many parents and carers.
Why the stress?
Many parents tell me and research confirms that the hardest part isn't autism itself - it's everything around it. The long waits for a diagnosis. The out-of-pocket costs to see specialists, or for therapy or educational supports. The endless phone calls and paperwork. Trying to get help, only to hit another wall.
Funding cuts to programs such as the National Disability Insurance Scheme (or NDIS) have removed crucial supports and added to the pressure.
Parents often spend extra time coordinating appointments, supporting school engagement, and advocating for their child. That invisible workload can take a toll, especially when combined with social isolation, lack of respite and little time to care for their own wellbeing.
Chronic stress and burnout are real risks for many parents, especially when the level of support required just isn't there.
What can parents and carers do?
A few approaches can help lighten the load:
be kind to yourself , especially on the hard days. Even a short break and some deep breathing to release tension can take the edge off and help you reset. It might not solve everything, but it can give you a small window to regroup and keep going
ask for help if you're struggling. Whether it's from your GP, a psychologist , a parenting helpline or something else . Reaching out is a strength, not a weakness. Informal help can be just as important , for instance from other parents with similar experiences, who just get it. You can find them in online support groups
research shows evidence-based parenting programs can help families of children with disability feel more confident and less stressed. They can also make it easier to manage tough times and strengthen the parent-child bond. The Australian government offers a free, online, self-paced program , which I co-wrote, to help parents cope.
How friends, family and schools can help
Many parents and carers carry a huge emotional load trying to help their autistic child feel supported in educational settings , such as childcare and schools.
They often become the case manager, counsellor and advocate to make sure their child is included, safe and seen.
If you're a friend, family member, or part of the school community, try to understand how challenging this can be. The struggle is often ongoing. Parents and carers aren't being difficult - they're doing what they can to give their child their best chance.
Compassion, a listening ear, or stepping in to help can make a real difference .
Ongoing support, even small things such as dropping off a meal, helping with school pick-ups, or sending a kind message, can ease the load more than you might realise.
Information and support for parents of autistic children is available . If this article has raised issues for you, or if you're concerned about someone you know, call Lifeline on 13 11 14.
Trevor Mazzucchelli is a co-author of Stepping Stones Triple P - Positive Parenting Program and a consultant to Triple P International. The Parenting and Family Support Centre is partly funded by royalties stemming from published resources of the Triple P - Positive Parenting Program, which is developed and owned by The University of Queensland (UQ). Royalties are also distributed to the Faculty of Health and Behavioural Sciences at UQ and contributory authors of published Triple P resources. Triple P International (TPI) Pty Ltd is a private company licensed by UniQuest Pty Ltd on behalf of UQ, to publish and disseminate Triple P worldwide. Trevor has no share or ownership of TPI, but has received and may in the future receive royalties and/or consultancy fees from TPI. Trevor has a child with autism and accesses support through the National Disability Insurance Scheme. He is also a member of the Parenting and Family Research Alliance (PAFRA), a multidisciplinary research collaboration of experts from leading Australian universities and research centres. The alliance is actively involved in conducting research, communication, and advocacy pertaining to parenting, families, and evidence-based parenting support. PAFRA is supported by the Australian Research Council Centre of Excellence for Children and Families over the Life Course.
