Earlier this week a group of nationally and locally recognised voices wrote to health and education leaders on the Isle of Wight, calling for an immediate pause in the use of the Portsmouth Neurodiversity Profiling Tool.
The groups have expressed strong concerns about the tool’s scientific basis and potential impact on children’s wellbeing. Read more about their concerns in the open letter.
Questions not answered
OnTheWight asked five questions of the Isle of Wight council and the NHS Hampshire and Isle of Wight (ICB). Here are the five specific questions and how the authorities avoided answering them (jump to their statement).
1. What research evidence did IWC/ICB rely on to justify the rollout of the Portsmouth Neurodiversity Profiling Tool on the Isle of Wight?
❌ Not answered.
There is no mention of any research evidence, studies, or evaluation supporting the use of the Portsmouth tool.
2. Why was the tool adopted without meaningful co-production with local neurodivergent people, families, and professionals?
❌ Not answered.
While the statement references recent listening events and survey responses, it does not address the lack of co-production prior to adoption of the tool.
3. Does IWC/ICB accept that the tool assesses children against neurotypical norms, and if so, how does this align with a neuro-affirming approach?
❌ Not answered.
The statement avoids any discussion of the tool’s underlying assumptions or its compatibility with a neuro-affirming model.
4. What training have staff received to ensure the tool is used safely and effectively, and who designed or delivered that training?
❌ Not answered.
No reference is made to staff training, who delivered it, or how it ensures safe use of the tool.
5. Will IWC/ICB now pause the use of the tool and commit to an independent review, in light of the concerns raised by signatories including Dr Damian Milton?
❌ Not answered.
The response neither acknowledges the concerns raised nor commits to pausing the rollout or conducting an independent review.
Response from IWC/ICB
Although the statement below offers general reassurances about service improvements and references to ongoing engagement, it sidesteps all five specific and substantive questions regarding the Portsmouth Neurodiversity Profiling Tool.
The statement reads,
“We are pleased that children’s health services across the Island are seeing significant improvements as a result of the joint-working between local families, schools, the Isle of Wight Council, the voluntary sector and the NHS. To support this work, we are also adding further resources and investment to the current spend for the Island.
“We are actively working with our partners to develop a centralised and sustainable plan that strengthens the services we currently provide. To ensure that any changes reflect the real needs of families living on the Island, we have been holding listening events to hear directly from parents and carers about the support that matters to them most. We have also reviewed over 2,500 responses to a recent system-wide survey aimed at patients, families, and professionals, regarding current Autism and ADHD assessment services and pathways.
“Working closely together, the NHS and the council have established an integrated neurodivergent team for 0–19-year-olds on the Island that anyone can contact for support, advice, and signposting. As the team develops, it will include a range of professionals such as family support, speech and language therapy, occupational therapy, and other practitioners. We are also working closely with local schools to develop clear pathways for children and young people.
“We are grateful for the support we have received in delivering these improvements, but we know there is still more to do and we will continue to build on the progress we have made to date.”
