A serious illness or injury to a family member is more than a medical crisis. It’s a health shock that triggers a ripple effect, forcing families to make difficult trade-offs with their time and money.

That’s what we found in our recent study, the first of its kind to show what happens to family finances, work and chores while a partner has a major illness or injury.

We show the effects of such health shocks extend far beyond the person who’s sick. A serious illness or injury is a shared family event that demands a significant and difficult re-allocation of time, money and emotional energy.

For instance, partners take on more household chores and cut back their work hours. Medical costs rise. And families go without holidays, alcohol or other discretionary spending.

Understanding these dynamics is the first step toward building better support systems for the thousands of Australian families who face this reality every year.

What we did

We used two decades of data from the Household, Income and Labour Dynamics in Australia (HILDA) survey to show how more than 2,000 Australian couples cope with a partner’s health shock. This could be something like a serious workplace accident or a cancer diagnosis.

We tracked work hours, time spent on household chores and care giving, and spending habits before and after the event.

We used data spanning about 22 years. This long-term view allowed us to see how households reacted to the event and whether they could return to their pre-shock lives.

By looking at couples where one person had a serious illness or injury, while the other remained healthy, we could isolate and measure the impact of this event on the entire household.

What we found

When a serious illness or injury strikes, the ill person cut back their hours of paid work, as you’d expect.

However, the healthy partner did not increase their paid work hours to offset the income loss. In fact, their work hours declined slightly.

The healthy partner spent 33% more time on caregiving and 5% more on home chores such as cooking and cleaning.

In other words, the initial family response is not to bring in more money, but to reallocate time to meet new needs at home.

Financially, households re-prioritised to cope. Medical expenses increased by more than 13% in the first year. To cover these new costs, families cut back on discretionary spending, particularly on things such as holidays and alcohol.

Household income only dropped modestly, especially if people could take paid sick leave. But the proportion of individuals reporting financial stress rose by 10%.

This happens because the decline in income is paired with a significant increase in non-negotiable costs, such as medical expenses and higher utility bills from spending more time at home.

How this compares

Our study is the first to use long-term household data to analyse the effects of a health shock on both the ill person and their partner across multiple areas – including employment, household expenditures and time use.

We also suggest Australia’s relatively generous worker’s compensation, sick leave and carers entitlements have cushioned families. Our study shows these likely meant the sick person and their partner were less likely to quit work compared to those in similar situations in other countries without similar support.

And while we showed the Australian male partners of ill women significantly increased time spent caregiving or doing chores, their British counterparts didn’t put in as many extra hours in a similar situation.

What are the implications?

Our research highlights the often overlooked role of the healthy partner as a “shock absorber”, whose unpaid labour is essential for a family’s recovery.

This suggests any social security system aimed at helping those with disabilities or illnesses should also consider the financial and personal burden on caregivers.

The increase in financial stress among affected households, despite existing support systems, indicates current social security programs may not fully cover the needs and costs associated with a major illness or injury.

The findings also highlight the importance of paid leave entitlements for caregivers, which is crucial for household financial stability, particularly for low-income families.

Flexible working arrangements – such as flexible working hours, working from home or a shorter work week – would also help caregivers look after their loved ones.

Yuting Zhang, Professor of Health Economics, The University of Melbourne and Federico Zilio, Postdoctoral Research Associate, Heidelberg Institute of Global Health and Honorary Fellow, Melbourne Institute, The University of Melbourne

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

When it comes to autism, few questions spark as much debate as how best to support autistic people with the greatest needs.

This prompted The Lancet medical journal to commission a group of international experts to propose a new category of “profound autism”.

This category describes autistic people who have little or no language (spoken, written, signed or via a communication device), who have an IQ of less than 50, and who require 24-hour supervision and support.

It would only apply to children aged eight and over, when their cognitive and communication abilities are considered more stable.

In our new study, we considered how the category could impact autism assessments. We found 24% of autistic children met, or were at risk of meeting, the criteria for profound autism.

Why the debate?

The category is intended to help governments and service providers plan and deliver supports, so autistic people with the highest needs aren’t overlooked. It also aims to re-balance their under-representation in mainstream autism research.

This new category may be helpful for advocating for a greater level of support, research and evidence for this group.

But some have raised concerns that autistic people who don’t fit into this category could be perceived as less in need and excluded from services and funding supports.

Others argue the category doesn’t sufficiently emphasise autistic people’s strengths and capabilities, and places too much emphasis on the challenges that are experienced.

What did we do?

We conducted the first Australian study to examine how the “profound autism” category might apply to children attending publicly funded diagnostic services for developmental conditions.

Drawing on the Australian Child Neurodevelopment Registry, we examined data from 513 autistic children assessed between 2019 and 2024. We asked:

• how many children met the criteria for profound autism?
• were there behavioural features that set this group apart?

Because we focused on children at the time of diagnosis, most (91%) were aged under eight years. We described these children as being “at risk of profound autism”.

What did we find?

Around 24% of autistic children in our study met, or were at risk of meeting, the criteria for profound autism. This is similar to the proportion of children internationally.

Almost half (49.6%) showed behaviours that were a safety risk, such as attempting to run away from carers, compared with one-third (31.2%) of other autistic children.

These challenges weren’t limited to children who met criteria for profound autism. Around one in five autistic children (22.5%) engaged in self-injury, and more than one-third (38.2%) showed aggression toward others.

So, while the category identified many children with very high needs, other children who didn’t meet these criteria also had significant needs.

Importantly, we found the definition of “profound autism” doesn’t always line up with the official diagnostic levels which determine the level of support and NDIS funding children receive.

In our study, 8% of children at risk of profound autism were classified as level 2, rather than level 3 (the highest level of support). Meanwhile, 17% of children classified as level 3 did not meet criteria for profound autism.

Our concern

We looked at children when they first received an autism diagnosis. Children were aged 18 months to 16 years, with more than 90% under the age of eight years.

This aligns with our earlier research, showing the average age of diagnosis in public settings is 6.6 years.

From a practical perspective, our biggest concern about the profound autism category is the age threshold of eight years.

Because most children are already assessed before age eight, introducing this category into assessment services would mean many families would need repeat assessments, placing additional strain on already stretched developmental services.

Second, modifications will be needed if this criteria is going to be used to inform funding decisions as it didn’t map perfectly onto level 3 support criteria.

On balance, however, our results suggest the profound autism category may provide a clear, measurable way to describe the needs of autistic people with the highest support requirements.

Every autistic child has individual strengths and needs. The term “profound autism” would need to be promoted with inclusive and supportive language, so as to not replace or diminish individual needs, but to help clinicians tailor supports and obtain additional resources when needed.

Including the category in future clinical guidelines, such as the national guideline for the assessment and diagnosis of autism, could help ensure governments, disability services and clinicians plan and deliver supports.

What can you do in the meantime?

If you’re concerned your child requires substantial support, here are some practical steps you can take to ensure their needs are recognised and addressed:

Explain your concerns

Not all clinicians have experience working with children with high support needs. Be as clear as possible about behaviours that affect your child’s safety or daily life, including self-injury, aggression or attempts to run away. These details, while difficult to share, help give a clearer picture of your child’s support needs.

It can also be a challenge to find and access clinicians with appropriate expertise. Another potential benefit of having a defined category is that it can better help families navigate care.

Ask about support for the whole family

Our studies show that many caregivers want more support for themselves but don’t always ask. Talk with clinicians about supports for yourself as well, including respite, or family support groups.

Reach out

Coming together with other carers and families can reduce your own isolation and normalise many of the unique challenges you face. Connecting with like-minded people can provide a supportive, empathetic and empowering community.

Plan for safety

For children with high support needs, prioritise safety planning with your child’s care team. This can include strategies to reduce risks, as well as planning how best to support your child’s interactions with health, education and disability services over time.

Kelsie Boulton, Senior Research Fellow in Child Neurodevelopment, Brain and Mind Centre, University of Sydney; Marie Antoinette Hodge, Clinical Lecturer, University of Sydney, and Rebecca Sutherland, Lecturer & Speech Pathologist, University of Sydney

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