A panel of international experts are calling for the introduction of a new diagnosis of “profound autism” amid concerns that people with the greatest need for support are being overlooked in services, research and funding.
Noting that awareness of autism “has grown monumentally in the past 20 years”, they said “much more could be done to improve life outcomes” for those with the disability.
The proposed “profound autism” category, recommended by a panel commissioned by The Lancet, would apply to autistic children aged eight and over, who have little or no functional language, an IQ below 50, and require round‑the‑clock supervision.
Researchers say the definition is intended to help governments and service providers plan more effectively for those with the most complex needs.
Nonetheless, the introduction would represent a considerable challenge.
“Change will depend on investments in science focused on practical clinical issues, and on social and service systems that acknowledge the potential for change and growth as well as the varied, complex needs of the autistic individuals and their families whose lives could be changed with such an effort,” the authors said in the journal article.
The research team partly based their recommendation on a new Australian study examining how the category might work in practice.
They found around 24 per cent of autistic children met, or were likely to meet, the criteria for profound autism – a proportion similar to international estimates, according to three academics from the University of Sydney who were involved in the study, and wrote about their findings in The Conversation.
The research analysed data from 513 children assessed for developmental conditions between 2019 and 2024.
The study also found that children in this group were more likely to display behaviours that pose safety risks. Almost half had attempted to run away from carers, compared with around a third of other autistic children.
However, the researchers stressed that significant challenges were also present among children who did not meet the proposed criteria: one in five engaged in self‑injury, and more than a third showed aggression.
Crucially, the proposed definition of profound autism did not always align with existing diagnostic “levels” used to determine support and funding. Some children who appeared to meet the criteria were classified at lower support levels, while others receiving the highest level of support did not meet the proposed definition. The researchers warned this mismatch could complicate funding decisions unless the criteria are adapted and carefully introduced.
One practical concern is the proposed age threshold of eight. The researchers suggested that the threshold is useful because by that age, their cognitive and communication abilities are considered more stable. However, most children are diagnosed before that age, meaning the introduction of a new diagnosis category means families may need repeat assessments, adding pressure to already stretched diagnostic services.
Despite these challenges, the study’s authors said the category could provide a clearer way to identify those with the highest support needs – provided it is used carefully and communicated in inclusive language that recognises each child’s strengths as well as their challenges.
They said including the category in future clinical guidelines could help ensure services are better planned and resourced, reducing the risk that children with the most complex needs fall through the cracks.
The researchers also offered practical advice for parents who believe their child is autistic and requires substantial support, urging families to clearly communicate safety concerns, seek guidance for the whole family, connect with other carers, and prioritise safety planning with clinicians.
