East Riding JSNA

Health and Wellbeing Assessment in the East Riding

Neurodiversity

This page initially focuses on Autism and Attention Deficit Hyperactivity Disorder (ADHD) in line with current strategic activity. Work is in progress to update this page with content for a broader range of neurodivergent conditions in the future.

Neurodiversity is a term we are starting to hear more and more often, but what does it mean? The word itself comes from ‘neuro,’ meaning the brain, and ‘diversity,’ meaning different, so it refers to the fact that our brains all behave differently.

Neurodiversity is a positive term that promotes awareness, recognition and respect for the ways that our brain functions can vary from person to person. Neurodiversity can and does exist without learning disability. When we talk about neurodiversity this can cover a wide range of specific differences and neurodivergent conditions, such as dyslexia, developmental co-ordination disorder (dyspraxia), attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD).

The concept of neurodiversity recognises that, for those with differences, things like retaining information, learning new things and maintaining focus can be more difficult.

By embracing neurodiversity, we can reduce the stigma and make it easier for people to access support and get help to build their confidence, self-esteem and resilience and ultimately, to help people to achieve their personal goals in life, learning and work.

The video below gives an overview of neurodiversity and is presented by one of the East Riding’s Public Health Leads.

Regarding the representation of data & information for neurodiversity, system partners have recognised that consideration of life stages and transitions between them is important.

The age group 0-18 is generally considered to be childhood with transition to adulthood at age 18, however, the age group 0-25 applies to children & young people including SEND.

These Transitions can reflect critical changes in care and advocacy for example at age 18, 25 and 65 when moving from children’s to adults and adults to older peoples services, where these age group distinctions are made.

Diagnosis figures are only available from the local NHS provider services and do not include data from the Right to Choose pathway or private providers. Efforts are underway to gather Right to Choose numbers via GP referrals, while private assessments remain unaccounted for.

National evidence suggests that around 1–2% of children in England are autistic based on population surveys, while school‑based data indicates that approximately 2.5–3% of pupils are identified with autism as a primary or secondary special educational need. Recorded prevalence has increased substantially over time, reflecting improved awareness, identification and diagnostic practice rather than a confirmed rise in underlying incidence. Autism is more commonly identified in boys than girls, although national evidence suggests that autism in girls remains under‑diagnosed. Overall, existing data is best interpreted as representing known and identified need, rather than the full prevalence of autism among children and young people.

NHY ICB commission an assessment, diagnosis and post diagnosis support service for children and young people in East Riding of Yorkshire with Autism – the service operates in line with NICE Guidelines. All referrals are sent via Special Educational Needs Coordinators (SENCOs) within schools, with GPs referring only for young people who are not in education. The service provides assessment, diagnosis and post diagnostic support and is delivered in partnership with Kids Charity and Matthews Hub Charity to ensure that children and young people and their families receive a range of support pre and post diagnosis. The service model has been enhanced with additional recurrent funding from 2019/20 and comprises of a multidisciplinary team (MDT) of specialist staff. There is a service specification in place with clear care pathways.

Click here to expand the section to show information on waiting lists

ASD Waiting list exceeding 52 weeks

The chart and table below shows that the assessment and diagnosis service East Riding waiting list exceeding 52 weeks has consistently increased week by week between 4th December 2024 and 30th April 2025, with numbers increasing from 66 to 628 over this period. Full East Riding ASD waiting list. The full East Riding Assessment and Diagnosis Service waiting list is displayed in Figure 4, showing an actual waiting list count increase of 37%, from 2,243 in May 2024 to 3,071 in April 2025. 


NHS England estimates that around 618,000 children and young people aged 0–17 in England have ADHD, representing approximately one quarter (24.7%) of the total population estimated to have ADHD nationally. Click here to expand the section for further information.

  • These figures are based on NICE prevalence assumptions (around 5% of children and young people) applied to population data and therefore represent estimates rather than confirmed diagnoses. Reliable local-level estimates are not currently possible due to uncertainty in the underlying data.
  • Demand for ADHD assessment among children and young people is high. As of December 2025, 165,195 open referrals (29.4%) for a possible ADHD diagnosis related to children and young people aged 0–17. In addition, a large number of referrals for people aged 5–24 are recorded through Community Health Services without an age breakdown, meaning that the total number of children and young people potentially waiting for assessment is likely to be substantially higher than the headline CYP figure alone.
  • Waiting times for ADHD assessment are described as lengthy, with only 9% of children and young people having waited less than 13 weeks by December 2025. By contrast, around two‑thirds (65.8%) of children and young people had been waiting over a year for an ADHD assessment, highlighting significant delays in access to diagnostic services during key developmental stages.

Source: UK Parliament

HNY ICB commissions a CYP ADHD service from Humber Teaching NHS FT which is part of the wider Neurodiversity offer. The service offers assessment, diagnosis and post diagnostic support. The service works in partnership with local charitable organisations in offering pre and post diagnostic support to CYP and their families. The service received additional funding to increase the number of specialist staff working within the team and an additional Locum Consultant Psychiatrist has been appointed, working across Hull and East Riding to support further reduction of the waiting list.

Click here to expand the section to show information on waiting lists.

Children’s ADHD Assessment Team Overall Waiting List

The East Riding waiting list that were over 52 weeks for ADHD assessments has been gradually increasing between April 2024 and November 2025 as illustrated in the chart below, shown by the orange bars.

On the 7th April 2024, the waiting list which was over 52 weeks numbered 59, approximately 15% of the total waiting list; however by 30th November 2025 the number had increased to 343 (49% of the list). A table with weekly waiting list numbers for the East Riding can be accessed here.



Matthew’s Hub supports those who are diagnosed autistic and/or ADHD without a learning disability from age 13 upwards who live in Hull or East Riding.

It supports individuals with or without a formal diagnosis, including those currently on waiting lists.

The staff are all neurodivergent and bring lived, academic and working experience to their roles. 

They provide opportunities to socialise, peer mentorship, coaching, advice and support in relation to diagnosis, education, health, and employment.

One of the documents produced by Matthew’s Hub (accessible here or by clicking the image below) provides a wealth of intelligence about neurodiversity, including this infographic.

Further information can be obtained from this link: Matthew’s Hub | Autism & ADHD Support in Hull & East Yorkshire Autism.

Preparation for Adulthood (PFA) is an umbrella term used to support the transition from childhood to adulthood for children and young people with Special Educational Needs and Disabilities (SEND), and to support them achieve the best outcomes.

PFA relates to young people aged 14-25 years and the responsibility rests across Children’s and Adult’s services. The four areas of PFA are:

  • Independent living
  • Good health and well-being
  • Community inclusion
  • Education and employment

In the East Riding, the Futures+ Service is the Learning Disability, Autism and Preparing for Adulthood service in Adult Social Care.

The service helps young people to think about their futures through the transition from childhood to adulthood and aims to prevent crisis and improve outcomes for young people and their families.

The service works in partnership with other agencies, such as Health, Education, and Mental Health, to provide a coordinated transition plan and a wrap-around support for each young person.

The service also involves young people, parents, and carers in co-producing the service design and delivery.

For more information, please view the ‘Overview of PFA in the East Riding’ section within the SEND Preparation for Adulthood JSNA page, a direct link is available here.

The information contained within this section been gathered from the Autism Voice Group and represents around a dozen individual voices. The key points in the table below are an AI summary of the full document, which can be viewed by accessing this link.

  • Autistic people consistently report issues with deficit‑based diagnostic language, long waits, lack of adult diagnostic services, and poor transitions from youth to adult systems.

  • The group emphasises a need for reliable pre‑diagnosis information and meaningful post‑diagnosis support, including flexible peer‑group models.

  • Mental health services often fail to recognise autistic needs, leading to re-traumatisation through restraint, disbelief, or misinterpretation.

  • Discussions highlight system failures, the need for training (especially for GPs/counsellors), and autism‑specific suicide prevention.

  • Autistic women, people with PDA/ARFID, and families require stronger tailored support.
  • Peer support is one of the strongest, most repeated needs. Autistic‑led groups offer validation, shared understanding, and practical problem‑solving.

  • Participants want structured, funded, co‑produced peer‑support options across the region—not just in central hubs.
  • Schools require better autism and neurodiversity training, and young people need tailored, practical learning opportunities.

  • Limited attendance from Children’s Services has restricted progress in this area.
  • Autistic people frequently encounter barriers across transport, public spaces, employment, and everyday services.

  • Reasonable adjustments are inconsistent, delays cause significant life disruption, and stigma remains widespread.

  • Participants call for autism‑friendly community design, flexible sensory environments, better workplace communication, and public myth‑busting.
  • Autistic people consistently report issues with deficit‑based diagnostic language, long waits, lack of adult diagnostic services, and poor transitions from youth to adult systems.

  • The group emphasises a need for reliable pre‑diagnosis information and meaningful post‑diagnosis support, including flexible peer‑group models.
  • The Board needs stronger autistic representation, clearer accountability (“What happens as a result?”), and more accessible meeting outputs.

  • Co‑production is central: autistic voices must be acted on, not just heard. Capacity issues mean workload and processes require redesign to ensure continuity and resilience.

A proposed structure includes:

  • Housing and living environments
  • Universal and specialist community services
  • Complex support
  • Health and wellbeing
  • Safety
  • Carer support
  • Each framed across universal, low‑level, and complex tiers.
  • Autistic people want a compassionate, accessible, co‑produced system that recognises diversity, reduces harm, and builds supportive communities.

  • Peer support, respectful language, timely services, trauma‑informed mental health care, and practical inclusion across everyday life are central pillars shaping the new strategy.

This mural was carried out as part of a co-production exercise with ICB colleagues to inform future service design. It contains information about ADHD that the group have found helpful, either to themselves individually or collectively. 

The design of this mural allows users to see relationships between their thoughts by using colour.  It also enables the discovery of hidden complexities and connections to facilitate decision making, effective brainstorming, exploration, and planning.


NHS

The process for Adults to request NHS Autism and ADHD assessment starts by having a conversation with the GP to organise referral.

ADHD and Autism Right to Choose pathway information:

Matthew’s Hub

Matthew’s Hub supports those who are diagnosed autistic and/or ADHD without a learning disability from age 13 upwards who live in Hull or East Riding.

They also offer help to those waiting for diagnostic assessment. The staff are all neurodivergent and bring lived, academic and working experience to their roles.

They provide opportunities to socialise, peer mentorship, coaching, advice and support in relation to diagnosis, education, health, and employment.

The NHS England ‘Health and Care of People with Learning Disabilities’ interactive model has been embedded below, but can also be accessed directly from this link, with further information available from here. The model has a number of interactive menus from which different conditions can be selected, as well as different areas (e.g. region, ICB, Sub-ICB or England overall).

Key points (national picture): A number of key points extracted from the model (for England overall) can be found within this section. Please click here to expand the section to view them.

Autism

  • Patients who have a learning disability and an autism diagnosis:
    percentage has increased each year from 21.4% in 2017-18 to 33.3% in 2023-24 and 35.3% in 2024-25.

  • Patients without a learning disability who have a diagnosis of autism:
    the percentage has increased from 0.5% in 2017-18 to 1.2% in 2023-24 and 1.4% in 2024-25.

  • Anxiety and autism:
    The highest rates of anxiety were in those who were autistic. 13.2% of those who had a learning disability and were autistic also had a diagnosis of anxiety in 2024-25 (12.8% in 2023-24). 12.6% of those who were autistic but without a learning disability had a diagnosis of anxiety in 2024-25 (12.0% in 2023-24).

Learning disability and ADHD prevalence

  • Patients who have a learning disability and an ADHD diagnosis:
    percentage has increased each year from 5.5% in 2017-18 to 9.0% in 2023-24 and 9.8% in 2024-25.

  • Female patients who have a learning disability and an ADHD diagnosis:
    percentage is 6.0% for 2024-25 (5.3% in 2023-24) and is lower than for male patients at 12.2% (11.4% in 2023-24).

  • Patients without a learning disability who have a diagnosis of ADHD:
    percentage has increased from 0.5% in 2017-18 to 1.2% in 2023-24 and 1.5% in 2024-25.

  • Highest rates of ADHD are in those who are autistic. Amongst those who were autistic but with no learning disability, 21.6% had an ADHD diagnosis in 2024-25 (19.8% in 2023-24). 18.1% of those who are autistic and have a learning disability also had a diagnosis of ADHD (17.1% in 2023-24).

Please visit the links below for further information on neurodiversity: