A group of international experts has been commissioned by The Lancet to propose a new category of “profound autism”, which would include children older than eight and those with little or no language (spoken, written, signed or via a communication device), with an IQ under 50, and who require 24-hour supervision and support.
In The Conversation, Kelsie Boulton, Marie Antoinette Hodge and Rebecca Sutherland explain that the new category is intended to help governments and service providers plan and deliver support, so autistic people with the highest needs aren’t overlooked.
It also aims to re-balance their under-representation in mainstream autism research.
They write:
It may also be helpful for advocating for a greater level of support, research and evidence for this group, but there are 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 that it doesn’t sufficiently emphasise autistic people’s strengths and capabilities, and places too much emphasis on the challenges that are experienced.
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 that determine the amount 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. They were aged 18 months to 16 years, with more than 90% younger than eight.
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 criterion is going to be used to inform funding decisions, as it didn’t map perfectly on to 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 guidelines for the assessment and diagnosis of autism, could help ensure governments, disability services and clinicians plan and deliver supports.
What can parents do in the meantime?
There are some practical steps that can ensure their needs are recognised and addressed:
Not all clinicians have experience working with children with high support needs. Patents must be as clear as possible about behaviours that affect their 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 his or her 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.
Support for the whole family
Our studies show that many caregivers want more support for themselves but don’t always ask. Parents need to talk to clinicians about supports for themselves as well, including respite, or family support groups.
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
See more from MedicalBrief archives:
Why autism rates are increasing in the US
Largest-ever study finds 102 genes responsible for autism
Breakthrough as subtypes found in autism – US cohort study
Brain changes in autism more sweeping than thought – UCLA study