AQW 40829/22-27

Ms Sian Mulholland
Alliance Party
North Antrim

Tabled Date: 17/02/2026
Answered On Date: 09/03/2026
Priority Written: No

Question:
To ask the Minister of Health whether his Department has considered the introduction of a clearly defined and operational category for autistic individuals with the highest and most complex support needs, as proposed by experts commissioned by The Lancet, in order to address identified gaps in service access, commissioning, and pathway clarity within existing Programmes of Care.

Answer:

My Department is aware that the Lancet Commission on the future of care and clinical research in autism has previously proposed that consideration be made around adopting the designation of profound autism as an administrative term to apply to children and adults with the most complex support needs. The Commission suggested this designation for people who have very limited or no language, significant intellectual disability (typically an IQ below 50), and a requirement for 24‑hour supervision, with the intention of improving service planning and ensuring this group is not overlooked in research or commissioning.

The Department is also aware that this proposed label is not universally agreed within the research or autistic communities. Several academics and autistic scholars have raised substantial concerns about the validity and usefulness of this classification. For example, Kapp (2023) argues that the term “profound autism” lacks a clear evidence‑based definition, relies on problematic functioning labels, and risks over-simplifying the diverse strengths and needs of autistic individuals.

Given these differing perspectives, my Department recognises that while the Lancet proposal aims to support service planning, any movement toward adopting an additional operational category would require careful consideration. This includes engagement with clinicians across Programmes of Care, researchers, autistic people and families, and alignment with regional strategies including the Autism Strategy 2023-2028.

At present, my Department is continuing to monitor emerging evidence and debate in this area but has not adopted a separate diagnostic or operational category beyond existing frameworks.