The Social Care Institute for Excellence (SCIE) has introduced best practice guidance to help the adult social care workforce address inequalities faced by individuals with learning disabilities and autistic people. The project explores key challenges such as delays in diagnosis, lack of reasonable adjustments, and the issue of ‘diagnostic overshadowing,’ where physical or mental health concerns are overlooked due to the focus on a person’s disability.

This guidance provides practical advice for social care workers to enhance the care experience for people with learning disabilities and autism. It aims to build confidence among workers and commissioners in delivering services, while increasing understanding of the legal frameworks that underpin effective and inclusive care.

The initiative draws on insights from the SCIE Fliers, a group of individuals with lived experience of learning disabilities and autism. Their experiences, including lessons from the Covid-19 pandemic, highlighted the longstanding challenges in care provision, such as a lack of awareness and skills within the health and social care workforce to address health risks for this group. The guidance incorporates feedback from service users, commissioners, and existing resources to promote co-production in service design.

Kathryn Smith OBE, SCIE’s Chief Executive, emphasised the importance of breaking down systemic barriers and ensuring high-quality, accessible care that empowers individuals. A co-created video featuring the SCIE Fliers has been developed to complement the guidance, further amplifying the voices of those with lived experience.

A new report from the Public Accounts Committee (PAC) has revealed severe failings in the special educational needs and disabilities (SEND) system, leaving families without adequate support and pushing nearly half of England’s councils towards potential financial collapse within 15 months. The committee has called for immediate government action to address the disparities in SEND provision and prevent a generation of vulnerable children from being left behind.

The report highlights vast differences in waiting times for Education, Health, and Care Plans (EHCPs) across the country, with only 50% issued within the required 20 weeks in 2023. It also notes a sharp rise in parents appealing SEND decisions, with tribunals overwhelmingly ruling in favour of families, reflecting systemic inefficiencies. The PAC has urged the Department for Education to investigate the causes of rising demand for SEND support, address inconsistencies in how needs are identified, and ensure sufficient resources are available for inclusive education.

The financial strain on local authorities is a key concern, with many councils accumulating significant deficits due to escalating SEND costs. The cumulative £4.6 billion shortfall in educational budgets poses a serious threat to the viability of local government finances. The PAC has demanded the government outline plans to address these deficits by March 2025 to avoid further disruption to SEND services.

Committee Chair Sir Geoffrey Clifton-Brown criticised the lack of urgency in addressing the crisis, describing the situation as an emergency that has been ignored for too long. He stressed that families and councils are being let down by a failing system, calling for decisive action to deliver meaningful reform and ensure children receive the support they need.

New research reveals that over 60 million people worldwide were living with autism in 2021, making it one of the top ten causes of non-fatal health burden for those under 20. This equates to an estimated one in 127 people globally being autistic, a significant increase from the one in 271 reported in 2019. The findings, published in The Lancet, are based on data from the Global Burden of Disease Study 2021.

The study highlights a notable gender disparity, with autism prevalence among males (1,065 cases per 100,000) nearly double that of females (508 per 100,000). High-Income Asia Pacific regions, including Japan, reported the highest prevalence globally (1,560 per 100,000), while Tropical Latin America and Bangladesh recorded the lowest. Autism affects individuals across all ages worldwide, with disability-adjusted life-years (DALYs) increasing due to population growth.

Researchers stress the urgent need for early diagnosis and sustained support for autistic individuals and their families. Enhanced data collection, alongside targeted interventions for associated risks like suicide, are essential for improving outcomes. These measures would help inform policies aimed at improving the quality of life for autistic people globally.

The authors emphasise that while early intervention is vital, addressing the evolving needs of autistic individuals throughout their lives, particularly under-represented adults, is equally important. The study was funded by Queensland Health and the Bill & Melinda Gates Foundation.

New research highlights the direct link between staff psychological wellbeing and the quality of support provided to individuals with learning disabilities. Published in the Journal of Applied Research in Intellectual Disabilities, the study systematically reviewed findings using the Maslach Burnout Inventory Human Services Version (MBI-HS) to explore burnout among staff in this field.

The findings confirm that the psychological demands of caregiving can negatively impact staff wellbeing, often leading to burnout. Interestingly, general exposure to challenging behaviours, including their frequency and the type of support offered, was not directly associated with burnout. However, one study revealed that emotional exhaustion was strongly influenced by staff fear of assault, suggesting that addressing this fear could reduce burnout levels.

The research reiterates previous evidence that staff in good psychological health deliver higher-quality care and are less likely to be absent or leave their roles. This improves care continuity, benefiting both clients and services. The study underscores the need for further research into the factors that influence staff wellbeing, particularly those that may enhance resilience and reduce burnout.

The authors advocate for a national observatory to monitor staff wellbeing and explore influencing factors systematically. This would allow for the standardisation and coordination of wellbeing data across services, creating a clearer understanding of the relationships between staff wellbeing, service settings, and client needs.

A new guide has been published to help practitioners use human rights principles to improve decision-making and outcomes for young autistic people and those with learning disabilities. Commissioned by the Local Government Association in collaboration with the British Institute of Human Rights, the guide emphasises the importance of person-centred, least restrictive practices.

Targeted at practitioners working with 14 to 25-year-olds, the guide provides information on human rights duties alongside practical case studies. It explains how the UK’s Human Rights Act (HRA), which incorporates rights from the European Convention on Human Rights into UK law, can be applied to everyday care. Practitioners are encouraged to use the HRA framework to review decisions internally, work collaboratively with colleagues, and address issues with other services, all while focusing on delivering quality, person-centred care.

The guide also stresses the importance of empowering young people, their families, and advocates to understand and assert their rights. It highlights the need to listen and respond to concerns about public bodies not respecting or protecting these rights. Effective care planning is key, ensuring individual needs and preferences are reflected in plans while any restrictive measures are carefully considered and justified.

Key rights discussed include freedom from discrimination, the right to liberty, the right to respect for private and family life, and protection from inhuman or degrading treatment. The guide aims to ensure these principles underpin all decisions and practices, supporting young people in achieving the best possible outcomes.

Canadian scientists have identified a gene, DDX53, as a contributor to autism, marking a significant step forward in genetic research on the condition. The discovery, published in The American Journal of Human Genetics, highlights the gene's role in brain development and function. Although located on the X chromosome, DDX53 was not previously associated with autism.

The study, led by researchers from The Hospital for Sick Children (SickKids) in Canada and Italy’s Istituto Giannina Gaslini, examined 10 autistic individuals from eight families. They found rare variants in the DDX53 gene that were inherited maternally. Further analysis of autism databases, including Autism Speaks MSSNG and the Simons Foundation Autism Research Initiative, identified an additional 26 individuals with similar DDX53 variants.

Dr Stephen Scherer, Senior Scientist at SickKids, stated that pinpointing DDX53 enhances understanding of autism's biological mechanisms, particularly in males. He emphasised that the discovery could lead to more accurate diagnostics for families. The study also underscores the complexity of autism, reinforcing the importance of detailed genetic analysis.

Lead researcher Dr Marcello Scala of the Istituto Giannina Gaslini said the gene had never been linked to neuropsychiatric conditions before. He noted that the findings not only support DDX53’s link to autism but also suggest the gene influences behavioural traits, paving the way for future research into related biological pathways.

Adults in Oxfordshire awaiting an autism diagnosis could face delays of up to 18 years, as the county's main diagnostic service struggles to cope with demand. The Oxfordshire Adult Autism Diagnostic and Support Service (OAADSS) has stopped accepting new referrals since November due to an overwhelming backlog.

Documents reveal that individuals referred after July 2023 may not receive an assessment until 2041. Buckinghamshire, Oxfordshire, and Berkshire West Integrated Care Board (BOB ICB), which oversees the service, has stated it is working to address the delays. Families impacted by the situation have expressed frustration, with one mother, Sarah, sharing how her 19-year-old son’s referral was halted almost immediately due to the closure of the waiting list.

Others, like Hayley from Oxford, have sought alternatives. Her brother faces a seven-year wait for an assessment, prompting her to explore private options via the NHS Right to Choose policy, which allows GPs to refer patients for privately funded assessments covered by the NHS. Hayley highlighted the importance of timely diagnoses, describing knowledge as empowering for those with autism.

BOB ICB acknowledged that demand for autism assessments has risen sharply, driven by greater awareness of the condition. The board stated it is working with OAADSS to find solutions, but families continue to face long waits and uncertainty about the future of local services.

Over the past year, nearly 3.8 million people sought help from NHS mental health, learning disability, and autism services – a rise of almost 40% compared to pre-pandemic levels. Recent NHS data reveals that 3,790,826 individuals engaged with these services in 2023-24, up from 2,726,721 in 2018-19.

Among these figures, over one million children accessed support, with 16-year-olds being the age group most likely to seek help. Alarmingly, one in five 16-year-old girls (70,963) were in contact with mental health services. To address this growing need, the NHS is expanding mental health teams in schools, aiming to provide access to in-classroom support for more than half of all pupils in England by Spring 2025.

Efforts are also underway to review the care provided to patients with severe mental health conditions, ensuring they receive comprehensive and tailored support. Claire Murdoch, NHS England’s National Mental Health Director, highlighted the strides made through increased investment under the NHS Long Term Plan, while acknowledging the work still needed to meet the rising demand.

Baroness Merron, Minister for Mental Health, praised the progress but emphasised the need for shorter waiting times. Plans include recruiting 8,500 additional mental health professionals and implementing early intervention initiatives in schools and communities to tackle the root causes of mental health issues.

Autistica, a leading autism research charity, has launched a free app called the Tips Hub, designed to provide reliable advice to autistic individuals, their families, and professionals working in the field. The app addresses concerns from the neurodivergent community about the overwhelming and often inaccurate information available online.

Developed with input from autistic people, the Tips Hub focuses on the topics they identified as most important. Dr Amanda Roestorf, Director of Research at Autistica and project lead, explained: “The app offers evidence-based, accurate, and practical advice, ensuring users can access trusted information. By centralising resources, the Tips Hub simplifies the search for reliable support.”

The app combines three dedicated hubs into a single resource tailored for distinct audiences. The Everyday Tips section supports autistic individuals and families with advice on topics such as diagnosis, financial well-being, and daily life activities. Professional Tips are designed to help those working with autistic people create inclusive environments, with guidance on better understanding autism. The Mental Health and Wellbeing Tips section offers tools and resources to address mental health challenges, promoting self-advocacy and resilience.

Autistica’s Tips Hub aims to empower the autism community with trusted, practical guidance. Whether for individuals, families, or professionals, the app seeks to improve understanding, inclusivity, and support for autistic people.

Calderdale and Huddersfield NHS Foundation Trust (CHFT) has been commended by NHS England for its innovative approach to addressing elective care waiting lists for patients with learning disabilities. Through targeted initiatives, the Trust has prioritised equitable access and outcomes, ensuring this underserved group receives the care they need.

Using tools such as a learning disability flagging system, a dedicated data dashboard, and comparisons to general population data, CHFT successfully identified and addressed disparities in care. They also established an enhanced task group to prioritise learning disability services, supported by individuals with lived experience, and delivered board-level training on the challenges faced by those with learning disabilities.

Since 2021, CHFT has reduced its waiting list for patients with learning disabilities to zero, ensuring all 77 patients previously waiting for care received treatment. This whole-system approach has led to significant improvements, including reduced hospital stays, fewer readmissions, and better health outcomes. Additional steps, such as partnerships with private dental services and targeted action on waiting lists, have further advanced care provision.

The Trust continues to enhance services with learning disability champions, accessible training for staff, and plans to introduce care navigators. CHFT’s Chief Executive Brendan Brown emphasised the importance of creating sustainable change to tackle healthcare inequalities, improving both patient outcomes and staff satisfaction.