A group of nationally and locally recognised voices have written 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 open letter, sent this morning (Monday 7th July 2025), expresses strong concerns about the tool’s scientific basis and potential impact on children’s wellbeing.
Sent to health and education leaders
The letter is addressed to key decision-makers, including the Chief Executive and Director of Children’s Services at the Isle of Wight Council, the Chief Executive and Deputy Director for Children’s Care at the Hampshire and Isle of Wight Integrated Care Board (ICB), both Island MPs, and the Chair of the Council’s Children’s Services, Education and Skills Committee.
It urges them to pause the rollout of the profiling tool and instead co-produce a “genuinely neuro-affirming” alternative.
Signed by prominent academics and support groups
Signatories include the world-renowned academic Dr Damian Milton, local groups such as Autism Inclusion Matters and Isle of Wight SEN Support, and a range of national advocates and organisations including Autistic Parents UK, Autistic Inclusive Meets, and Neurodiverse Connection.
A total of 14 individuals and organisations have added their names to the letter (see in full below).
Criticism of outdated assumptions
The letter states that while early identification and support for neurodivergent children is vital, the Portsmouth tool “is manifestly not fit for purpose.”
It argues that the tool is based on outdated and debunked research, assessing children against neurotypical norms and grading them on a “low to high” scale. According to the authors, this approach reinforces deficit-based thinking and risks causing long-term harm.
Concerns about staff training and harmful strategies
The letter also criticises the training provided with the tool, stating that it fails to prepare staff adequately. It describes the resulting profiles as “lacking depth” and says the recommended strategies are often unhelpful or potentially harmful.
Examples include rewarding eye contact or exposing children to distressing sensory input—practices the signatories believe can exacerbate trauma rather than support wellbeing.
Call for meaningful co-production
The authors raise concerns about how the tool was introduced on the Island, claiming there was no genuine co-production with families or professionals.
They say the decision appears driven by the aim of consistency across Hampshire and the Isle of Wight, rather than a careful assessment of local needs.
What they are asking for
The letter ends with four specific calls to action:
- Pause the use of the tool while a full review is carried out
- Work in partnership with neurodivergent people, families and professionals
- Ensure any future tools are based on modern, neuro-affirming research
- Invest in high-quality training co-developed with the neurodivergent community
“The children of the Isle of Wight deserve nothing less”
The signatories conclude that neuro-affirming practice cannot come from top-down approaches, but must be rooted in respect, dignity, and up-to-date understanding of neurodiversity.
They write:
“The children and young people of the Isle of Wight deserve nothing less.”
OnTheWight has put a number of questions to the council and the ICB and will update once we hear back.
Open Letter regarding the rollout of the Portsmouth Neurodiversity Profiling Tool on the Isle of Wight
To:
Wendy Perera, Chief Executive Isle of Wight Council
Ashley Whittaker, Director of Children’s Services Isle of Wight Council
Maggie MacIsaac, Chief Executive Hampshire and Isle of Wight ICB
Anthony Harper, Deputy Director Children’s Care, Hampshire and Isle of Wight ICB
Richard Quigley, MP Isle of Wight West
Joe Robertson, MP Isle of Wight East
Councillor Paul Brading, Chair Children’s Services, Education and Skills Committee
To whom it may concern,
We the undersigned are writing as concerned members of the Isle of Wight community and beyond – parents, carers, professionals, academics and neurodivergent advocates – in response to the recent rollout of the Portsmouth Neurodiversity Profiling Tool across the island.
We wholeheartedly support the aim of identifying children and young people’s needs early and providing tailored, compassionate support. Timely identification, advice and strategies based on neuro-affirming principles can be transformative. Families and professionals alike benefit from approaches that focus on adapting environments and staff practice, improving understanding, and embracing neurodivergence as a natural and valuable part of human diversity.
However, we are deeply concerned that the Portsmouth Neurodiversity Profiling Tool falls short of these aims. It is manifestly not fit for purpose. It is built on outdated assumptions and flawed, debunked research rather than applying the theoretical and practical understanding that has emerged from research over the last decade and more. The tool does not embrace neurodivergence, but assesses children and young people against neurotypical norms, grading them on “low to high” scales in comparison to a supposed average peer. This framing is not only inaccurate but also potentially harmful, reinforcing the deficit-based thinking and approaches that have damaged generations of children.
Staff training provided alongside the tool does not adequately prepare professionals to use it meaningfully or safely. The profiles it generates are often of poor quality, lacking depth, nuance, and real utility for families and practitioners alike. Worse still, the strategies it recommends range from redundant (simple things already being done) to deeply concerning. Some suggestions – such as
rewarding eye contact or encouraging graded exposure to distressing sensory stimuli – risk exacerbating trauma and causing long-term harm to the very children the tool purports to support.
We are also troubled by the process by which this tool has been introduced. There has been no genuine co-production with local families or professionals on the Isle of Wight. The decision to implement the tool appears to have been made in the interest of achieving consistency across Hampshire and the Isle of Wight, rather than through a careful evaluation of the needs, values, and voices of our local community. The concerns relating to the tool highlighted above have been raised repeatedly by professionals, neurodivergent peer support groups and parent carers for the last 2 years, to our knowledge, but this has not prevented it being rolled out ever further.
Neuro-affirming practice cannot be achieved through top-down mandates or simplistic one-size-fits-all tools. It requires listening to neurodivergent people, respecting their experiences, and committing to practices that affirm their identity and dignity.
We call on all local education and health leaders to:
- Pause the use of the Portsmouth Neurodiversity Profiling Tool pending a full review;
- Engage in meaningful local co-production with neurodivergent individuals, families, and professionals;
- Ensure that any tools or strategies adopted are rooted in up-to-date, neuro-affirming research;
- Invest in staff training and continuous professional development that is developed and delivered in partnership with neurodivergent people. This must equip professionals utilising any tools that are developed to replace the Portsmouth Neurodiversity Profiling Tool with a deep understanding of neurodiversity, trauma-informed practice, and inclusive support.
The children and young people of the Isle of Wight deserve nothing less.
Signed:
Autism Inclusion Matters Isle of Wight
Autistic Parents UK
Emma Dalmayne
Helen Daniel
Viv Dawes
Helen Edgar
Dr Chloe Farahah
David Gray-Hammond
Isle of Wight SEN Support
Emma and Tristan Kluibenschadl
Ann Memmott
Dr Damian Milton
Neurodiverse Connection
Tigger Pritchard
