By Guest Authors Tania Robinson and Colleen Brannon
SNJ Intro: A while ago, we wrote about the efforts by some local NHS bodies to limit neurodiversity assessment referrals by demanding evidence of six months’ school support first. That was in West Berkshire. Now, two SEND parents from the Isle of Wight, Tania Robinson and Colleen Brannon, have uncovered another example of service providers placing barriers there, and in other areas, in the way of children’s healthcare. They’re here on SNJ today, detailing their families’ experiences of another new initiative that is not all it seems.
When early support is not as helpful as it may first seem by Tania Robinson and Colleen Brannon
At first glance, the new pathway to support for neurodivergent (primarily autistic and ADHD) children currently being rolled out in several areas across England appears to offer the kind of early, needs-led, wrap-around support parents have been crying out for. Scratch the surface, however, and it’s clear it is an attempt to relieve pressure on the system. The pathway introduces barriers to referral, diverting parents from seeking a diagnostic assessment for their child, regardless of the child’s needs. Even worse, the principles that underpin the model are based on outdated and debunked research and lead to strategies known to put neurodivergent people at risk of harm.
Navigating the world of SEND can be tumultuous, overwhelming, exhausting, and often outright traumatic. Looking back to the start of our families’ journeys, we recall desperation, a sense of being completely out of our depth and a very real awareness of our own shortcomings. What does my kiddo need? What should I be doing? How can I help them? Who could help us both? What does life have in store for them? Will they be able to do all the things they want to? What if they can’t? What if I cannot help them? The uncertainty and the questions swirled around, unanswered, and on repeat, over and over and over. We had a neurodiversity-related diagnosis, but that was it. What now?
If a professional had come to us, saying, ‘Hey, it’s ok, I can tell you what to do to make things better for your child, ’ we would have chewed their arm off and done everything they said without question, grateful for the advice. This is why those who devise interventions have a moral duty to children, young people and their families, to use all the knowledge and evidence they have to avoid any potential risk of harm.
A waiting list for the waiting list
Right now, children are suffering from overlong diagnostic waiting lists and little support. Neurodivergent (ND) children and young people are disproportionately more likely to be suspended or excluded from school and are over-represented in youth justice systems. 92% of children persistently absent from school are neurodivergent. Around three-quarters of neurodivergent people struggle with mental health issues. Suicide rates are higher in the neurodivergent population than in neurotypical people. Getting support for our children so often means soul-destroying battles and SEND tribunals or judicial reviews.
Portsmouth City Council created the Portsmouth Neurodiversity Profiling Tool back in 2021. It claims to be a needs-led, early intervention model that promises to improve wellbeing for ND children and young people, through collaborative working between the child, family, school staff and health care professionals. Our parent carer group, Isle of Wight SEN Support, first came across this tool in the minutes of a council meeting. It was described as “a move away from referral for diagnosis”.
Immediately, alarm bells started ringing. The importance of a neurodiversity diagnosis is well established. So why would moving away from this be good for neurodivergent people? ‘Autistic’ and ‘ADHD’ are not dirty words, and diagnosis is vital, borne out in research and lived experience. An ADHD diagnosis can provide access to effective treatment and delaying this is not in any child’s best interests. Doing so only puts increased and unnecessary pressure on both the child and their school.
What is the Portsmouth Profiling Tool?
The Portsmouth Neurodiversity Profiling Tool is a measure of nine different areas, called neurodevelopmental strands. It measures visible behaviour on a scale from low ability to high ability:
- cognitive ability,
- energy levels,
- attention
- impulse control,
- speech and language,
- empathising and systemising,
- flexibility and adaptability,
- emotion regulation
- motor skills.
If a child is presenting as neurodivergent (whether diagnosed or not), a profiling tool is completed by school staff, the parent, and sometimes the child or young person. We have seen many examples where the child or young person has not been included in this process at all.
Strategies are implemented and then reviewed several months down the line—we’ve seen fluctuations between three and six months in frequency. The child’s behaviours are then reassessed against the low to high scales, in the hope they have become more aligned with neurotypical standards (indicated as average on the scale). At this point, either the same strategies will continue to be implemented because behaviours are becoming “less neurodivergent”, or additional/different strategies will be implemented to “close the gap” in a perpetual loop of behaviour modification.
While Portsmouth is adamant that diagnostic gatekeeping is not an aim of the tool, there is documentation freely available on the Contact charity website, created by Health & Care Portsmouth, entitled ‘Reducing Demand for Neurodiversity Diagnosis by Changing the Way we Support Neurodiverse children and young people’.
So, is this Tool driven by a desire to meet needs earlier for the benefit of neurodivergent children, or is it to reduce demand for formal diagnosis and make budgets balance?
What does the NHS say about assessing for neurodivergence?
The NHS advises local health Integrated Care Boards that prompt access to autism assessment is beneficial and brings with it access to services, protections and support:
“A universal, equitable and timely access to an autism assessment in every ICB is important…A diagnosis enables clinicians to recommend interventions that have been tested for safety, acceptability, efficacy and effectiveness with people meeting the same diagnostic criteria as the person they are supporting; a critical tenet of evidence-based care. Clarity about autism diagnosis can be validating for many people in their day-to-day lives. For example, this can help with the development of a positive autistic self-identity and foster connections with the autistic community.
NHS England
Diagnosis is a mechanism to ensure reasonable adjustments are made in general physical health or mental health services. A diagnosis is often vital in clinical formulation and treatment planning for co-occurring conditions. For example, some common mental health interventions are known to be less effective or can require adaptations for autistic people. Diagnosis can help facilitate access to some forms of statutory protection beyond the healthcare context. For example, an autism diagnosis may be considered when a person seeks an Education, Health and Care Plan. It can afford protections under the Equality Act 2010 and enable a neurodivergent to confidently advocate for reasonable adjustments.
Autistic adults are entitled to a care assessment under the Care Act 2014. For an undiagnosed autistic person, access to personal understanding, healthcare, education, social care, reasonable adjustments in the workplace, statutory protection from discrimination, or benefits may be withheld.
For these reasons, it is important that ICBs do not restrict or withhold access to an autism diagnosis, for example, because locally a decision has been taken by health to conduct only a needs-based assessment. Barriers to a diagnosis increase a person’s risk for poor outcomes in life, for example, late diagnosed autistic adults commonly experience multiple forms of abuse and can experience poorer mental health, suicidality or hospital admission…Delayed or unequal access to autism assessment can result in missed opportunities for support from education, social care, voluntary, community and social enterprise. In turn, this can increase the likelihood that people require restrictive and costly hospital care. That is, while broad and timely access to an autism diagnosis is costly to the health service, narrow and delayed access may be more costly still.”
So it’s clear the NHS already knows the importance of timely diagnosis, so why is it developing more ways to gatekeep?
How we’ve been trying to break down these barriers
We have spent months researching, talking to families who’ve used the Portsmouth Neurodiversity Profiling Tool and meeting with some of the people involved in its creation. We’ve talked to education, health and social care professionals, and academic researchers across the country, determined to discover what the tool was, how it impacted the children and young people on the receiving end of it as well as the professionals delivering it. Did it prove to be the ‘early help’ it promised to be? Did it provide that essential neuro-affirming support and acceptance our children and young people are crying out for? Would we be able to support its rollout in our area?
We have learned so much from people brave enough to share their experiences. While these experiences may not represent the full range, some of our worst concerns were confirmed. Themes included increased waiting times, no clear route to a formal assessment, little to no extra support, unhelpful strategies, overwhelming pressure on school staff, and unhelpful, arbitrary barriers to diagnosis, similar to those seen in Berkshire’s ‘graduated response’ method of reducing referrals.
We have heard several stories of families having to go through several cycles of the profiling tool before being able to access a diagnosis pathway.
What are parents telling us?
A parent in Cornwall told us:
“Schools are all doing them differently, adding confusion. I’ve done it for two kiddos. After a whole term, it’s revisited and gone through again, adding or removing bits. This has to be completed three times before school can pass it on. However, I was told, as it’s a new process, there is nowhere to pass it to yet.”
Many families told us they had felt they had no choice but to seek a private assessment or pursue a diagnosis through the Right to Choose pathway.
A parent in Portsmouth told us:
“It’s absolutely useless in all honesty! My son was seen by the community paediatric team and diagnosed as having ‘neurodivergent differences’ just as he turned four. Since then he’s had two ND profiles completed as his needs had changed/increased, and I was told that they would take it to panel for him to be put forward for an assessment. The panel came back to me with an email/letter saying a blunt no – with no explanation. I chased it up for what felt like forever, to query why they’d said no, and after several months of emails, I finally got an answer – lack of evidence! Which to me, is an absolute joke! They’ve had a paediatrician say he’s neurodivergent, he’s had two ND profiles showing his needs, has an IEP – what more do they need?! It’s just a way to fob off the people of Portsmouth, slowing down the process of getting them diagnosed so they either give up or go private. They got what they wanted – I’ve gone private now.”
Parent
Not enough meaningful data
Portsmouth City Council trialled this tool with 51 families, although only 46 completed it, over a three-month period in 2021, coinciding with the COVID pandemic. It was then rolled out widely across the city, with no published data about its strategies or long-term impact. Portsmouth justified it by claiming evidence of small improvements in wellbeing, which could just as easily have been due to the lower demands on children during lockdowns, or simply being listened to.
Between 2021 and 2024, autism and ADHD diagnoses in Portsmouth decreased by 92% and school exclusions and suspensions approximately tripled. No attempt has been made to prove a causal link between the profiling tool and the increased suspensions, but it is certainly a curious correlation.
Describing behaviour does not identify needs
The Portsmouth Neurodiversity Profiling Tool claims to be needs-led. But what it calls ‘needs’ are arguably descriptions of behaviour. An example taken from one of several completed profiling tools we have seen states, “has difficulty following instructions”. It is a description of the child’s behaviour from an outsider perspective, with no reference to the need that might lie beneath. For example, perhaps the child has a hearing impairment, or maybe they have difficulty processing verbal instructions? Are there any motor planning difficulties that are preventing the child from carrying out the instruction? Is the child able to filter out competing demands on their attention to focus on the instruction? Does the child want to carry out the instruction? Are they experiencing a nervous system response to the demand of a direct instruction? Do they often get so absorbed in the task at hand that they do not hear the instruction?
If needs are framed as descriptions of behaviour, the only strategies that can be implemented are behavioural. Unsurprisingly then, the recommended strategies to ‘fix’ the instruction following behaviour included teaching ‘listening behaviours’ such as eye contact, nodding and verbal affirmations and rewarding ‘good listening behaviours’.
The implication is the child just needs to ‘try harder’ and adopt a neurotypical communication style. Does this sound like a needs-led approach?
Different, not less
For decades, neurodivergent people have been subjected to attempts to “train” them out of perfectly harmless and valid neurodivergent ways of being, thinking and communicating, and conform to more acceptable, neuro-normative ways of being. This comes under many guises: Applied Behaviour Analysis, the Primary Behaviour Service and now, The Portsmouth Neurodiversity Profiling Tool. The underlying principles are the same: neurodivergent equals ‘deficient’ with neurotypical behaviours being the gold standard. There is an enduring belief that behavioural techniques can and should be used to condition neurodivergent people out of, well… being neurodivergent.
Using strategies to bring neurodivergent behaviours more in line with neurotypical expectations is akin to teaching forced ‘masking’ – when neurodivergent people change themselves to appear less neurodivergent. It is not necessarily conscious, although it can be. Masking has been shown to be associated with mental health difficulties, burnout, exhaustion, a poor sense of self and delays in diagnosis.
To achieve the behaviour change, strategies are selected by those delivering the tool (usually schools) from an online resource bank. It’s not clear how staff determine which strategies are the most appropriate to the individual. Some of these strategies are simple and easy to implement, such as creating a quiet area for an overwhelmed child to go to, something we hope would be part of the existing landscape of any education setting. Others are complex, requiring specialised knowledge and an understanding of current research findings, even though many school staff do not have time, capacity, or interest to stay up-to-date with the latest research. Some of the strategies are outright harmful and archaic. For example, exposure therapy for sensory sensitivities and forcing eye contact. The negative impact of these approaches is well documented in research and through the reported lived experience of many neurodivergent adults.
Lack of sufficient ND-led training and support for schools
The Portsmouth Neurodiversity Profiling Tool is expected to be completed and implemented by school staff, following a two-hour training session. A fundamental prerequisite to any profiling tool is that those completing it know the child well and are trusted by the child. Yet there is often a disconnect between how a child or young person presents in school compared to at home, which can lead schools to doubt the young person’s struggles or experiences. Many of us have heard “Well, he’s fine in school, so it must be a problem at home”.
Nothing about us, without us
One of the things the Portsmouth model does have going for it, is that it was co-produced with the area’s parent-carers. However, there is little evidence of authentic co-production with neurodivergent adults, children, or their families and neurodivergent-led organisations and experts were notably absent from the model’s development. Here on the Isle of Wight and other communities where it has been introduced, the strategy has been imposed on us, rather than locally co-created. This violates widely accepted principles of participatory research and service design.
Here on the island, we already have a very highly rated and autistic-led organisation, Autism Inclusion Matters. They would be excellent people to consult with, and to include as equal partners to co-producing any new ND service here. The organisation recently had funding cut as part of a local ‘service restructuring’ – but due to overwhelming support from the local community, they have been able to raise funds independently to continue to be there for autistic islanders and their families. We know other areas are seeing similar funding cuts to valued provision, in favour of the Neurodiversity Profiling Tool and the framework to operationalise it.
Encouragingly, more neuroaffirming profiling tools and models already exist. The Greater Manchester Version 9 profiling tool is one such example. It:
- Centres on the child’s lived experience.
- Uses neurodivergent-friendly language.
- Does not benchmark against neurotypical norms.
- Highlights unmet needs rather than unwanted behaviours.
- Validates ND communication styles and promotes inclusion, not conformity.
- Provides a clear pathway to diagnosis
This approach respects the autonomy and dignity of neurodivergent people, aligning with modern, evidence-informed neurodiversity paradigms.
A Better Way
The Portsmouth Neurodiversity Profiling Tool and MDT model require urgent re-evaluation. While the concept of early, integrated, and needs-led support is music to a SEND parent’s ears, the implementation and underlying principles do more to delay and harm than to help.
Any profiling tool intended to support neurodivergent individuals must:
- Be co-produced locally with ND people.
- Reject deficit-based, behaviourist models.
- Centre internal experience, environmental fit, and neuroaffirming practices.
- Celebrate neurodivergent strengths and ways of being.
- Never become a barrier to diagnosis and essential statutory protections.
The Isle of Wight and other regions now have the opportunity to trailblaze a better way, replacing neurodiversity-lite practices with tools and services that truly support authenticity, well-being, and rights. A model that we, as a local parent carers group, and as neurodivergent adults, can proudly promote to our families, safe in the knowledge that it will support our children meaningfully and crucially, do no harm.
We urge any academics, researchers, and advocacy organisations willing to sign an open letter urging decision makers to re-think the tool to please get in touch.
About the authors:
- Tania Robinson is an autistic mum to four neurodivergent children. She has a BSc in Psychology and is studying for an MA in Inclusion (Autism and Children). She is a co-director at Isle of Wight SEN Support.
- Colleen Brannon is a multi-neurodivergent mum to three neurodivergent children, working in Acute Mental Health on the Isle of Wight. She is in her second year studying for an MSc in Psychology. She is also a co-director at Isle of Wight SEN Support.
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Also read:
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- Young neurodivergent gamers tell CAMHS how to improve support: Focus on the cause, not just the symptoms
- Neurodiversity and Ableism – a young person’s perspective
- Restricting autism assessment? Not on our watch, say Bristol parents, as they launch legal action
- The autistic girls are out there: Losing the gender bias in diagnosing autism
- Beyond EHCPs: Why Inclusion Needs More Than a Document
- The Unacceptable Truth: 20 SEND legal rights at risk from the Government’s SEND reforms
- How health and family support systems are failing children starting school
- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals
- When things go right: Shining a light on SEND Practitioners making a positive impact [Giveaway!]
- From suspicion to support: why the Government’s child protection reforms matter for disabled children
- Have your say on the future of transport for disabled children and young people
- Unison voices major concerns over SEND reform health plans for sick and disabled children out of school in the EOTAS consultation
- Top Tips for the EOTAS & EHCP consultation: Protect your child’s rights to statutory SEND support
- Navigating constraints: Why a former PCF chair thinks the current model is missing the mark for families
- Dear Secretary of State for Education, Lucy Powell: an Open Letter from Special Needs Jungle and SEND legal charity SOS!SEN
- Research: Disabled young people define inclusive education as “learning in the place that’s right for them”
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- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals - September 3, 2026
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