When it comes to autism, few questions spark as much debate as how best to support autistic people with the greatest needs.
Authors
- Kelsie Boulton
Senior Research Fellow in Child Neurodevelopment, Brain and Mind Centre, University of Sydney
- Marie Antoinette Hodge
Clinical Lecturer, University of Sydney
- Rebecca Sutherland
Lecturer & Speech Pathologist, University of Sydney
This prompted The Lancet medical journal to commission a group of international experts to propose a new category of "profound autism".
This category describes autistic people who have little or no language (spoken, written, signed or via a communication device), who have an IQ of less than 50, and who require 24-hour supervision and support.
It would only apply to children aged eight and over, when their cognitive and communication abilities are considered more stable.
In our new study, we considered how the category could impact autism assessments. We found 24% of autistic children met, or were at risk of meeting, the criteria for profound autism.
Why the debate?
The category is intended to help governments and service providers plan and deliver supports, so autistic people with the highest needs aren't overlooked. It also aims to re-balance their under-representation in mainstream autism research.
This new category may be helpful for advocating for a greater level of support, research and evidence for this group.
But some have raised concerns that autistic people who don't fit into this category could be perceived as less in need and excluded from services and funding supports.
Others argue the category doesn't sufficiently emphasise autistic people's strengths and capabilities, and places too much emphasis on the challenges that are experienced.
What did we do?
We conducted the first Australian study to examine how the "profound autism" category might apply to children attending publicly funded diagnostic services for developmental conditions.
Drawing on the Australian Child Neurodevelopment Registry, we examined data from 513 autistic children assessed between 2019 and 2024. We asked:
- how many children met the criteria for profound autism?
- were there behavioural features that set this group apart?
Because we focused on children at the time of diagnosis, most (91%) were aged under eight years. We described these children as being "at risk of profound autism".
What did we find?
Around 24% of autistic children in our study met, or were at risk of meeting, the criteria for profound autism. This is similar to the proportion of children internationally.
Almost half (49.6%) showed behaviours that were a safety risk, such as attempting to run away from carers, compared with one-third (31.2%) of other autistic children.
These challenges weren't limited to children who met criteria for profound autism. Around one in five autistic children (22.5%) engaged in self-injury, and more than one-third (38.2%) showed aggression toward others.
So, while the category identified many children with very high needs, other children who didn't meet these criteria also had significant needs.
Importantly, we found the definition of "profound autism" doesn't always line up with the official diagnostic levels which determine the level of support and NDIS funding children receive.
In our study, 8% of children at risk of profound autism were classified as level 2, rather than level 3 (the highest level of support). Meanwhile, 17% of children classified as level 3 did not meet criteria for profound autism.
Our concern
We looked at children when they first received an autism diagnosis. Children were aged 18 months to 16 years, with more than 90% under the age of eight years.
This aligns with our earlier research , showing the average age of diagnosis in public settings is 6.6 years.
From a practical perspective, our biggest concern about the profound autism category is the age threshold of eight years.
Because most children are already assessed before age eight, introducing this category into assessment services would mean many families would need repeat assessments, placing additional strain on already stretched developmental services.
Second, modifications will be needed if this criteria is going to be used to inform funding decisions as it didn't map perfectly onto level 3 support criteria.
On balance, however, our results suggest the profound autism category may provide a clear, measurable way to describe the needs of autistic people with the highest support requirements.
Every autistic child has individual strengths and needs. The term "profound autism" would need to be promoted with inclusive and supportive language, so as to not replace or diminish individual needs, but to help clinicians tailor supports and obtain additional resources when needed.
Including the category in future clinical guidelines, such as the national guideline for the assessment and diagnosis of autism , could help ensure governments, disability services and clinicians plan and deliver supports.
What can you do in the meantime?
If you're concerned your child requires substantial support, here are some practical steps you can take to ensure their needs are recognised and addressed:
Explain your concerns
Not all clinicians have experience working with children with high support needs. Be as clear as possible about behaviours that affect your child's safety or daily life, including self-injury, aggression or attempts to run away. These details, while difficult to share, help give a clearer picture of your child's support needs.
It can also be a challenge to find and access clinicians with appropriate expertise. Another potential benefit of having a defined category is that it can better help families navigate care.
Ask about support for the whole family
Our studies show that many caregivers want more support for themselves but don't always ask. Talk with clinicians about supports for yourself as well, including respite, or family support groups.
Reach out
Coming together with other carers and families can reduce your own isolation and normalise many of the unique challenges you face. Connecting with like-minded people can provide a supportive, empathetic and empowering community.
Plan for safety
For children with high support needs, prioritise safety planning with your child's care team. This can include strategies to reduce risks, as well as planning how best to support your child's interactions with health, education and disability services over time.
Marie Antoinette Hodge is a Clinical Neuropsychologist at the Children's Hospital at Westmead.
Kelsie Boulton and Rebecca Sutherland do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.
