Autism and ADHD assessment waits are up to 2 years' long. What can families do in the meantime?
- Written by Sarah Pillar, Research Development Manager, Telethon Kids Institute
Reports have emerged from around Australia of waitlists of up to two years to receive a diagnostic assessment for neurodevelopmental conditions, such as autism and attention deficit hyperactivity disorder (ADHD).
Assessment delays can create additional stress for families who are already worrying their child may be developing differently.
These waiting times are a symptom of the significant strain our health systems are under. System reform will take time, and in the meantime, there are many children who require urgent support.
But supporting your child doesn’t need to be put on hold while you wait for assessment.
Read more: New national autism guideline will finally give families a roadmap for therapy decisions
Why are waitlists so long?
Diagnostic assessments are an important part of the clinical pathway for children developing differently.
Diagnoses can provide parents and carers with a deeper understanding of their child. A diagnosis allows the child, their family and the supporting health professionals to benefit from all the information we have about that diagnosis, to understand how best to support the child going forward.
One reason why our diagnostic systems are currently under so much strain is because of expanding diagnostic boundaries. The criteria for autism and ADHD have changed over time, meaning more children meet criteria for these conditions than before.
Another reason is that our health, disability and education systems often require a formal diagnosis for a child to receive support. This further increases demand for diagnostic assessments.
Often, long waitlists result in children and families not getting timely access to crucial early therapy services. Delays can mean that many of the best opportunities to support children’s development early in life are missed, which can further entrench developmental disability and disadvantage.
However, importantly, there are many beneficial things that families can do in the meantime to pave the way for the future.
3 things families can do
While a diagnosis may help a child access support services, they are still able to access services without a diagnosis.
If a parent is worried about their child’s development, then it is important they continue to seek out support services while the child is on a diagnostic waitlist.
A GP is typically the best person to consult in the first instance. They can then refer the child and family to public or private therapy services. However, private service options may involve out-of-pocket expenses, which can create inequity in access to services.
Parents can also take steps to:
1. Build connections with their child
A key part of all early supports is nurturing the connection parents have with their child. All children benefit from having frequent, meaningful time set aside to connect with their primary caregivers.
During this special connection time, parents might focus on slowing down, approaching their child with curiosity, being open to following their child’s special interests, and trying a variety of communication strategies (including words, gestures or using pictures) to support communication.
Parents needn’t feel pressure to spend all their time engaging with their child – but any time that can be dedicated to this will be time well spent.
2. Gather information to support diagnosis
Diagnoses of ADHD and autism are based on the observation of certain behaviours. A clinician will be able to observe some of these behaviours in their assessment, but they will also rely on information from parents about how their child usually behaves or interacts in different situations.
Parents can support this process by noting examples of the patterns of behaviours they’ve observed. These might include special interests, repetitive activities, social interactions, emotional regulation, sensory preferences or how their child communicates.
It is important parents don’t only note what a child finds difficult, but also their strengths and interests. Sometimes, the things a child is particularly good at can tell us just as much as their challenges.
3. Prioritise family wellbeing
While parents are often proactive in seeking support for their child, they can sometimes neglect their own need for support. Parents are the most important person in a child’s life, and parental capacity and wellbeing can have a significant influence on their child’s outcomes.
While waiting for a diagnosis, parents should start to plan how they are also going to get the support they need. This can include staying connected within the community and making time for activities that bring them and their family joy.
Looking beyond diagnosis
When parents seek out a diagnosis for their child, they want help to support their child’s development. But long waits for assessment and diagnosis can present barriers between Australia’s health, education and disability systems and the help families need. The long waiting lists to receive a diagnostic assessment are at odds with what we know about the importance of early intervention.
Recent clinical trials have shown how providing support to babies and parents at the first sign of developmental concern can lead to positive developmental outcomes for children.
This approach prioritises acting quickly over diagnostic clarity, and makes it more likely children and families receive support during critical times in brain development.
As Australia seeks to reform our early childhood development system, the need of families to receive prompt support should be front of mind.
Authors: Sarah Pillar, Research Development Manager, Telethon Kids Institute
