What’s best way to support autistic kids with mild to moderate delay?

Perth (Australia), Aug 27 (The Conversation) Autistic children with mild to moderate developmental delay will no longer be eligible for the National Disability Insurance Scheme (NDIS) from mid-2027.

Instead, they will be directed to a new support system called Thriving Kids. This is yet to be fully designed, but it’s intended to prioritise children receiving support through mainstream community-based services.

Understandably, some parents and professionals are concerned, and many are asking whether the new program can match the support currently provided through the NDIS.

While time will reveal the impact of the policy, the more urgent task now is to define and deliver what best practice looks like for autistic children.

Start with terminology With the announcement came some confusion about autism and developmental delay.

Disability and NDIS Minister Mark Butler referred to children with “mild to moderate autism”, which is not actually a diagnosis, or a way we talk about autism in contemporary practice.

A clearer way would have been to refer to children with developmental delay as the target group for Thriving Kids, noting it will include many, but not all, autistic children.

The wording is important because, from a clinical perspective, autism is a lifelong neurodevelopmental condition that influences the way a person understands and interacts with other people and the world around them. Children don’t “grow out of autism”, but needs can fluctuate over time.

Developmental delay is a term used when a child is behind their peers in one or more aspects of development, such as motor skills, communication, or cognition.

Many autistic children have a developmental delay, but not all.

A three-year-old autistic child may have a mild developmental delay in motor skills that impacts their ability to climb at the playground. A five-year-old autistic child may have a moderate delay in language, which impacts their ability to understand and follow instructions in the classroom. But another autistic child may be at, or above, the age expected level for their developmental milestones.

Around 25 per cent of autistic children have profound disability, meaning they require 24/7 supervision and support to be safe.

By seeing autism and developmental delay as separate, but related, we are better able to understand and meet the different needs of children “across the spectrum”.

So what does best practice look like for autistic children with mild to moderate developmental delay? Best practice for autistic children Australia’s national guideline sets out recommendations for supporting the learning, participation and well-being of autistic children and their families.

The guideline puts forward a principles-based approach that places children and families at the centre, and includes recommendations for goal-setting, selecting and delivering supports, monitoring outcomes and safeguarding.

The goals for supporting autistic children are no different from those for all children. They need love, opportunities to learn through everyday activities, and strong connections with family, culture and community.

The difference comes when children are struggling, and the question shifts to what additional supports will help. Keeping this broader understanding front of mind makes every other decision about extra support clearer and more consistent.

A stepped care approach The guideline states support should be personalised for each child and family. There is no blanket approach to supporting autistic children that will be equally beneficial for each child and family.

At a system level, it means a stepped-care model of support in which the right type of support is delivered at the right time and in the right amount to match the child’s age, developmental level, strengths, needs and family circumstances. This is best practice internationally and something we should strive for.

Let’s say a parent takes their child to a routine visit with a maternal child health nurse or GP, and there are signs of developmental delay. Perhaps the child is behind in terms of motor skills and communication.

In a stepped-care model, the nurse or doctor can listen, ask questions, and understand any concerns the parents may have. If some additional support is needed, the “next step” depends on exactly what was learned.

For one parent, the “next step” might be some information and strategies to encourage their child’s development, for another, it might be connection to a community playgroup, and for another, a referral for some further assessment.

If difficulties emerge in childcare or school settings, the most effective approach is usually to strengthen the capability of educators to include and support children.

There may also be scope for targeted specialist input, such as speech pathology, physiotherapy, or psychology, when needed.

The point is that the “steps” match the needs, and will be different for each child and family.

As professionals, we can support parents to make decisions by encouraging them to ask: “Is this the best next step for my child and family?” This approach helps prevent the over-servicing that can happen when families are directed straight to the highest level of support.

What should happen next? The new Thriving Kids program represents a genuine opportunity to transform how Australia supports children with mild to moderate developmental delays, including many autistic children.

Done well, it could become the stepped-care model of support that families desperately need. Get it wrong, and it becomes another well-intentioned policy that fails the children it’s meant to help.

Stepped-care models require deliberate design, sustained investment and careful attention to implementation details.

The key to getting this right lies in genuine co-design with the people who matter most: children and families themselves. They understand what works and what doesn’t, and where the gaps are. (The Conversation) SKS GSP