Parents of neurodivergent kids need support. But those who need it most often wait longer

Parenting any young child is full of highs and lows.

In addition to these, parents and caregivers of children with neurodevelopmental conditions such as autism and attention-deficit hyperactivity disorder (ADHD) are more likely to face greater levels of strain and higher support needs. They are also more likely than other parents to experience poor mental health.

But our new research found when they experienced mental health concerns, these parents and carers also faced more barriers to accessing support than other parents.

Their children also experienced longer delays getting an initial neurodevelopmental assessment.

What we did

Our research used the Australian Child Neurodevelopment Research Registry to look at mental health concerns in 187 parents and carers of children referred for neurodevelopmental assessments in NSW between 2020 and 2023.

Neurodevelopmental assessments typically include evaluations of a child’s developmental, cognitive, language, social, motor and adaptive functioning. They are helpful for understanding a child’s strengths and challenges. These assessments help identify conditions such as autism, ADHD, communication disorders, and other developmental and learning delays.

Caregivers completed a questionnaire one month before their child’s assessment. They provided information about their own mental health symptoms, and the supports and services they used for themselves and their child.

We then looked at whether caregivers who reported more mental health concerns had different experiences compared to those with fewer concerns. In particular, we looked at whether their children received assessments at different ages, and whether they faced more barriers or accessed different types of supports.

What we found

We found 41.7% of parents and carers reported elevated mental health concerns, including anxiety, depression and ADHD symptoms. This is higher than in the general population, where about one in five adults (22%) experience a mental health condition each year.

These parents and carers reported needing more support and faced more barriers when trying to access supports for their family.

All caregivers noticed developmental delays in their children at around three years of age, replicating our past study. However, children of caregivers with mental health concerns were, on average, a full year older by the time they received a developmental assessment. Their children also had more emotional and behavioural challenges and support needs.

Caregivers with mental health challenges said they needed more support for themselves and their children, but found it hard to access these supports. They also wanted more access to parental respite, and they reported greater difficulty accessing psychological services and behavioural therapies for their children.

Barriers to accessing care included transport difficulties, trouble coordinating appointments, and a lack of knowledge about where to go or who to contact for help.

Our previous research shows families from financially disadvantaged backgrounds have greater difficulties accessing services and experience more barriers to care.

Support needs to extend to families

The new federal program Thriving Kids is being set up to support children with developmental concerns. But our results suggest for it to work well, it needs to take a whole-of-family approach and reach disadvantaged families early.

This means offering evidence-based support when it’s needed most, for both children and their caregivers. For example, some parents may need additional navigation supports to address family system needs. Caregivers may also need to be linked in with mental health supports for themselves.

The importance of integrated, family-focused care has also been highlighted in multiple government reports, including the National Children’s Mental Health and Wellbeing Strategy, the National Guideline for the assessment and diagnosis of autism, and the national ADHD guideline.

What can caregivers do now?

Parents and carers of children with neurodevelopmental conditions are often surprised when they’re advised to look after and prioritise their own needs too. By meeting their own needs, they will be in a better position to support their family.

Caregivers with mental health needs will require different types and amounts of supports for themselves and their children to thrive.

Talking with a health professional, such as your GP, can be a good first step. They can provide support recommendations, help you navigate your child’s care, and may also be able to provide links to parent support groups or respite care. Respite care can involve someone else looking after your child for a short period, so you can rest and have time for yourself.

Clinicians also need to step up

Some simple steps clinicians can take include:

1) Recognising and identifying parental distress

Many parents say they are rarely asked about how they are doing, even though they do a lot of work supporting their children.

Services can go a long way by helping to identify caregiver needs and discuss what supports might be needed.

During developmental assessments, clinicians may notice that caregivers are experiencing stress or mental health concerns. It’s important clinicians consider broader family supports when providing recommendations for the child.

2) Reducing stigma

Caregivers may need to feel safe to express their needs without judgement and to understand that looking after themselves is an important priority.

Clinicians can help by creating a safe space where caregivers can share their concerns, so they are more likely to seek and receive support.

3) Navigating and sharing information

Families often need support navigating care.

Clinicians can provide clear information and pathways to support, including local and online supports and services, parenting programs and caregiver respite services.