There are reports from across Australia of waiting lists of up to two years to get a diagnostic assessment for neurodevelopmental disorders, such as autism and attention deficit hyperactivity disorder (ADHD).
Delays in assessment can cause additional stress for families who are already concerned that their child will develop differently.
These waiting times are a symptom of the great pressure on our health systems. The system reform will take time and in the meantime there are many children who need urgent help.
But supporting your child doesn’t have to be put on hold while you wait for the assessment.
Read more: New national autism guideline will finally give families a roadmap for therapy decisions
Why are waiting lists so long?
Diagnostic assessments are an important part of the clinical way for children who develop differently.
Diagnoses can give parents and caregivers a better understanding of their child. A diagnosis allows the child, their family and supporting health professionals to take advantage of all the information we have about that diagnosis to understand how best to support the child in the future.
One of the reasons why our diagnostic systems are under so much pressure today is that diagnostic boundaries are being pushed. The criteria for autism and ADHD have changed over time, meaning that more children than before meet the criteria for these conditions.
Another reason is that our health, disability and education systems often require a formal diagnosis before a child receives support. This further increases the demand for diagnostic research.
Long waiting lists often prevent children and families from accessing crucial early therapy services in a timely manner. Delays can mean that many of the best opportunities to support early childhood development are missed, and that can be even worse anchor developmental disability and disadvantage.
More importantly, though, there are many helpful things families can do in the meantime to pave the way for the future.
Read more: From deficits to a spectrum, thinking around autism has changed. Now a call is being made for a ‘profound autism’ diagnosis
3 things families can do
While a diagnosis can help a child access support services, they can still access services without a diagnosis.
If a parent is concerned about their child’s development, it is important that they continue to seek support while the child is on a diagnostic waiting list.
A general practitioner is usually 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 can involve out-of-pocket expenses, which can lead to inequality in access to services.
Parents can also take steps to:
1. Bond with their child
An important part of all early support is nurturing the bond parents have with their child. All children benefit from regular and meaningful time being set aside for them connect with their primary caregivers.
During this special bonding time, parents can focus on slowing down, approaching their child with curiosity, being open to following their child’s special interests, and trying different communication strategies (including words, gestures, or the use of pictures) to support communication.
Parents shouldn’t feel pressured to spend all their time with their child – but any time that can be spent on this is time well spent.
2. Collect information to support the diagnosis
diagnoses of ADHD And autism are based on the observation of certain behavior. A clinician will be able to observe some of these behaviors in their assessment, but will also rely on information from parents about how their child usually behaves or interacts in different situations.
Parents can support this process by recording examples of the behavior patterns they have observed. This could include special interests, repetitive activities, social interactions, emotional regulation, sensory preferences, or how their child communicates.
It is important for parents to pay attention not only to what a child finds difficult, but also to their strengths and interests. Sometimes the things a child is particularly good at can tell us as much as their challenges.
3. Prioritize the well-being of the family
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 the parent’s capacity and well-being can have a major impact on their child’s outcomes.
While waiting for a diagnosis, parents should start planning how they’re going to get the support they need, too. This may include staying connected within the community and making time for activities that bring joy to them and their family.
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Read more: Curious about ADHD, autism and your child’s development? What you need to know about getting a neurological assessment
Look beyond the diagnosis
When parents seek a diagnosis for their child, they want help to support their child’s development. But long waiting times for assessment and diagnosis can create barriers between Australia’s health, education and disability systems and the help families need. The long waiting lists for a diagnostic test 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 signs of developmental care can lead to positive developmental outcomes for children.
This approach prioritizes prompt action over diagnostic clarity, and makes it more likely that children and families will receive support during critical moments in brain development.
As Australia seeks to reform our early childhood development system, families’ need for prompt support must be paramount.
