Most early support programs for autistic children (also called “early interventions”) are provided after diagnosis. But long waiting times can leave families feeling stressed that they are “missing out” on critical opportunities to support their child.
With last week’s government announcement of A$22 million for two new pilot programs, support for babies and their parents is set to become more available – and potentially ease demand for National Disability Insurance Scheme (NDIS) supports.
Our team recently consulted with more than 200 community members, including autistic and non-autistic parents, clinical professionals, and researchers to understand their views on what very early supports might look like.
So what do families need to know about these types of early support and are they worth the hype?
Read more: Autism and ADHD assessment waits are up to 2 years' long. What can families do in the meantime?
Increasing support needs
Currently 88,617 children under seven are supported by the NDIS. Some 10% of boys and 4% of girls aged five to seven access the scheme and half of all child participants are registered for autism supports.
The substantial need for services has led government to consider other options for supporting neurodivergent children. Rather than waiting until after an autism diagnosis, very early supports for infants may promote better outcomes while also taking pressure off an overloaded system.
Government interest in very early support programs has increased following research suggesting that for every $1 invested in supporting neurodivergent infants and parents, the NDIS could save at least $3 down the track. The Australian study modelled service costs through to children’s 13th birthday.
Read more: Therapy for babies showing early signs of autism reduces the chance of clinical diagnosis at age 3
What are autism supports for babies?
Supports provided very early in life, before a diagnosis, are sometimes called “pre-emptive interventions”. The idea is that a relatively small amount of support early on can help prevent future difficulties, as families are better equipped to understand their baby’s skills and needs and respond supportively.
Until now, there has been very limited support available for families before diagnosis. Several different models have been developed and trialled, but these are not widely available in the community.
Our work with the autistic community has identified key recommendations for supports for neurodivergent infants, to assist parents to make informed decisions about what is best for their child.
Because these very early programs are aimed at supporting such young babies, the work should be with the parents, rather than with the child. Supports can involve parent training and education focused on helping parents understand and support their child. Parents might learn strategies and ways of interacting that they can then use at home with their little one.
An example of this might be a clinician and parent observing an infant together and practising noticing their communication cues, or following the infant’s lead and engaging together in activities the infant is interested in (regardless of whether these are “usual” for neurotypical children).
This type of support can be valuable because neurodivergent children can communicate in different ways, and parents might need some help to understand what their baby wants and needs.
Becoming a new parent brings many changes, and insights from the autistic community indicate parents of neurodivergent children may require additional support. Many parents of autistic children may also be neurodivergent or exhibit autistic traits, including sensory sensitivity.
But this won’t look the same for everyone. Supports should be tailored according to what the infant and family needs. The amount of support families need will also vary. It’s got to be balanced so that children can continue to play and participate in the community without the burden of attending too many appointments.
But not all babies who show early signs of neurodivergence will be autistic. Ideally, support provided will be something that is helpful for any child. Community members told us that programs for infants should aim to foster an enriching and supportive environment around the child – promoting secure attachment and supporting infants as they grow into happy, healthy children (and adults).
Similarly, supports should not be aimed at making children appear neurotypical, trying to “fix” or eliminate autism. Rather the aim should be to promote understanding of a baby as an individual, with their own unique strengths and ways of communicating.
Read more: New national autism guideline will finally give families a roadmap for therapy decisions
What does the evidence say?
This is a relatively new area of research and evidence regarding the effectiveness of supports is still emerging.
An international review of 13 studies reported mixed outcomes with supports leading to an increase in parents’ use of strategies – but this only translated to an improvement in infants’ communication for those who used the strategies consistently. A second review found low to moderate quality evidence overall.
An Australian clinical trial with 103 infants and parents, which some of our team were involved in, showed improvements in communication and a positive impact on developmental outcomes. This study helped inform an initial pilot of similar supports in Western Australia, and is the basis of recent reports of cost savings.
While there is promising local evidence of benefits for one model of very early support, research in this area is ongoing.
What’s next?
The announcement of new pilot programs for babies showing early signs of neurodivergence creates an opportunity for much-needed further research regarding the potential benefits of these very early supports across different contexts and service models.
It will be important for policymakers to consider implementation strategies to help parents use the support strategies at home in order to maximise their benefits.
Autistic community involvement will also be essential to inform the roll out of supports if the program is expanded – to ensure they genuinely benefit those who need them.
Cathy Bent has received funding for the work reported here from the International Society for Autism Research (INSAR) and La Trobe University ABC Early Career Researchers Award Scheme (Healthy People, Families and Communities Research Theme), and funding for related and other research, including salary support, from the Australian Government Department of Social Services (DSS). She has also received fees for training on the Autism Diagnostic Observation Schedule (ADOS).
Alexandra Aulich has received funding for the work reported here, including salary support, from the International Society for Autism Research (INSAR) and La Trobe University (Healthy People, Families and Communities Research Theme). She has also received salary support through coordination of training on the Autism Diagnostic Observation Schedule (ADOS).
Christos Constantine identifies as autistic. He has worked at La Trobe University to conduct the research reported here, for which he received salary support from grants from the International Society for Autism Research (INSAR) and La Trobe University (Healthy People, Families and Communities Research Theme).
Kristelle Hudry has received funding for the work reported here from the International Society for Autism Research (INSAR) and La Trobe University (Healthy People, Families and Communities Research Theme), and funding for related and other research from the Australian Government Department of Social Services (DSS), and National Disability Insurance Agency (NDIA), the AutismCRC, Autism Queensland, JVCKENWOOD Corporation, La Trobe University (School of Psychology and Public Health, and Understanding Disease Research Focus Area), and the Medical Research Future Fund. She has also received fees in her previous role as Associate Editor for Research in Developmental Disabilities (RIDD) and for training on the Autism Diagnostic Observation Schedule (ADOS).
This article was originally published on The Conversation. Read the original article.
