The Rapidly Growing Waiting Lists for Autism and ADHD Assessments

Access to care and support shouldn’t be a waiting game – everyone deserves the chance to flourish without unnecessary delays.

Every child deserves to grow up in a loving and nurturing environment, where they feel safe and unconditionally supported to thrive. Today, there are around 1.2 million autistic people in England, and up to 2.2 million people with ADHD, making the task of providing the right support beyond essential.

Yet, the long waiting times for autism and ADHD assessments are delaying the care and support that many children urgently need. In most cases, a formal diagnosis becomes crucial for accessing the right health and educational support, and without it, children can face significant challenges. Recent reports have shown that delays in providing timely autism support can lead to long-term struggles, including mental health difficulties and social isolation.

Every child deserves better, and it’s time for a change.

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Current Health Landscape in the UK

In England, hundreds of thousands of children and young people are living with neurodevelopmental differences which require long-term support, including autism and ADHD, as well as differences that affect communication, mobility, and learning.

New NHS data from September 2024 shows that 2024, 204,876 people in England are waiting for an autism assessment, representing a 25% rise in just one year. According to NICE (National Institute for Health and Care Excellence) guidelines, no one should wait longer than 13 weeks for an assessment. However, the data reveals that 87% (163,666) of the people waiting have surpassed the recommended 13-week waiting time.

How Long Are Children Waiting for Autism and ADHD Assessment in England?

Children with neurodevelopmental differences often face long waits for their first appointment in community health and mental health services. The waiting span may vary based on the reason for referral and the specific service.

• In community health services, children typically wait the longest if referred for Down’s Syndrome (an average of 2 years and 7 months) or the School Nursing Service (2 and a half years).
• In mental health services, the longest waits are seen for children referred with Organic Brain Disorder (1 year and 4 months on average) or people waiting for the epilepsy/neurological service team (a median wait of 244 days or about eight months).

There are also cases when children end up waiting years for an assessment, delaying access to the support they need.

• In community health services, the median wait time for a neurodevelopmental diagnosis was 2 years and 3 months. Nearly half (41%) of children waited over 2 years, with 17% waiting more than 4 years.

Reasons Behind Growing Waiting Lists

The growing demand for assessments and support in health services stems from a range of complex and varied factors. Based on a commissioner’s perspective, gaps in the broader system appear to have fostered a diagnosis-driven approach rather than one focused on people’s individual needs.

Health, education, and social care frequently overlook opportunities to provide integrated, early support for children with neurodevelopmental differences. As a result, long waits for assessments and diagnoses are delaying more and more over time.

Increased Demand for Assessments

The rise in referrals can be attributed in part to increased awareness and understanding of autism, ADHD, and other neurodevelopmental differences. This heightened awareness has encouraged more people, including adults, to seek support.

The Covid-19 pandemic further amplified this trend, as lockdowns, school closures, and remote work environments revealed previously unrecognised symptoms. Advocacy by charities and the widespread use of social media have also played a key role in increasing understanding of neurodiversity.

Experts remain divided on whether the rise in diagnoses reflects an actual increase in autism and ADHD cases or previously unmet needs now being addressed. Broader assessment criteria have also contributed to the trend, encompassing people who might not have been considered under earlier guidelines.

Research highlights inconsistencies in diagnostic practices, with some NHS centers being twice as likely to assess adults as autistic, and variations in the rate of referrals resulting in diagnoses across different regions.

Capacity Challenges in Healthcare Services

The lack of allocated funding for SEN support often leaves schools unable to provide the resources necessary to identify and meet children’s diverse educational needs. Similarly, ICBs face challenges in following the framework due to limited funding for workforce development and recruitment.

Adequate investment is needed to establish a consistent process and reduce waiting times, ensuring children and families receive the timely support they deserve.

The Diagnosis-led vs. Needs-led Approach

When children don’t get the support they need, it’s not just public funds being wasted-it’s their potential and childhood being taken away. So many children are missing out on the care that could help them flourish while families endure the stress of lengthy waiting lists, most of which confirm the support was needed all along.

By focusing on each child’s needs, rather than waiting for a diagnosis, we can offer support earlier and lighten the burden on families. More children could be understood and supported with better resources for nurseries, schools, and family centres without unnecessary obstacles.

If we don’t act now, we risk a future where unsupported neurodivergent children face avoidable struggles like poor mental health or substance misuse. But with the right care today, these same children could grow into independent, thriving adults. It’s not just about systems-it’s about giving every child the chance they deserve.

Importance of Timely Assessments for Effective Intervention and Support

Timely assessment is a crucial step in getting the right support and understanding the unique needs of each person. For many, the assessment is the first chance to uncover what they need to thrive.

The demand for ADHD and autism assessments has increased significantly in recent years, with many families facing long waiting lists. At the same time, the demands for community services and mental health support have grown, making it even harder for people to get the timely support they need.

Too often, people are told that support isn’t available without a formal diagnostic assessment. This can lead to difficulties at school, work, or at home and may cause mental health challenges like anxiety or depression. In some cases, this can lead to a crisis or unnecessary institutionalisation.

Implications of Long Waiting Times

Long waiting times for autism and ADHD assessments can leave people feeling lost and unsupported, with their mental health often taking a hit. The delay in receiving a diagnosis means they miss out on vital support, which affects not only their emotional well-being but also their education and personal development.

Struggling without the right guidance can lead to feelings of social exclusion and frustration, making it harder to thrive in daily life and reach their full potential. These delays ultimately impact their quality of life, preventing people from being active citizens in the community.

Impact of Delays on Mental Health Outcomes

Delays in autism and ADHD assessments can deeply affect people’s mental health, often leaving them feeling frustrated, confused, and unsupported.

Without a clear understanding of their needs, people may struggle to make understand their challenges, leading to feelings of anxiety, self-doubt, and isolation. These delays can also prevent people from accessing the support and resources they need, making everyday tasks even more overwhelming.

• Increased feelings of depression and anxiety due to not understanding their struggles or receiving proper support.
• Struggles to access the right interventions, which can make it harder to cope with daily challenges.
• Social isolation and difficulties at school or work because their needs are not being met.
• Emotional distress from feeling misunderstood or unsupported by those around them.
• An increase in behavioral challenges as people try to manage their emotions without the right tools or guidance.

Long-Term Effects on Children and Young Adults

The long-term effects of delays in autism and ADHD assessments go far beyond emotional and academic challenges, often leading to serious consequences that deeply affect a young person’s life. When assessments are delayed, it can prevent people from receiving the timely support they need, resulting in lasting difficulties that shape their future opportunities and well-being.

Some of the key long-term effects include:

• Chronic mental health issues, such as severe anxiety, depression, and even trauma, are caused by a lack of understanding and support, which may escalate into more serious problems like self-harm or self-destructive thoughts.
• Struggles in school can make learning overwhelming, limiting access to education and future career opportunities.
• Feeling disconnected or misunderstood by peers can lead to loneliness, making it harder to form meaningful relationships.
• A lack of support may result in behaviours being misunderstood, leading to involvement with the justice system instead of appropriate care.
• Difficulties in securing fulfilling work may lead to long-term unemployment or underemployment, increasing feelings of social isolation.
• Unmet needs can affect physical well-being, contributing to challenges with self-care, a heightened risk of addiction, or other health concerns.

These delays can result in a lifetime of missed opportunities, and the cycle of social exclusion, isolation, and challenges can be difficult to break without timely intervention and the right support.

What Care Providers Can Do to Help

As care providers, we have the responsibility to improve the quality of life of every person that we serve. First and foremost, we need to stay committed to respecting people’s human rights and freedoms and treating every person with dignity and respect.

It’s our moral duty to encourage people to grow, learn and live as active citizens in the community. We need to advocate not only for the people we support but for every person or family who faces challenges in finding the right care and support for their loved ones.

Because true change grows from each one of us.

Innovative Solutions to Increase Capacity

There is an urgent need for innovative and effective solutions to address the growing demand for autism and ADHD assessment and support. Co-production, for example, is a powerful way to achieve this. It’s about sharing responsibility and giving people a voice in sharing their needs. This ensures support that’s not only tailored to individual needs but also rooted in people’s lived experiences.

Working together with families, caregivers, public services, and local authorities can make the health and care system more accessible for people. It brings communities and services together to design systems that are flexible, inclusive, and prepared for growing demands.

With co-production at the heart of these efforts, we can reduce waiting times and deliver care accessible for all.

Get Support with Catalyst Care Group

The growing demand for autism and ADHD support has reached a scale where many people are waiting longer to receive the support needed. This challenge stands out even amidst the wider pressures on health services, highlighting the need for a broader, collaborative response involving multiple sectors.

Catalyst Care Group offers integrated autism and ADHD support through supported living and person-centred community services. Our in-house multidisciplinary team of PBS specialists, speech and language therapists, and occupational therapists work together to achieve meaningful outcomes for children and adults with multiple needs.

We are committed to bridging the gap between hospital care and community living through personalised community transition support. We strive to make community support accessible for everyone.

For more information on how we can help, don’t hesitate to reach out to us today.