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 that 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 ensure 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 concerns for you, or if you’re worried about someone you know, please call Lifeline on 13 11 14.

Trevor Mazzucchelli, Associate Professor of Clinical Psychology, Curtin University

This article is republished from The Conversation under a Creative Commons license. Read the original article.