A new report has unveiled a concerning situation regarding the assessment of autism in children, revealing that thousands of autistic children and young people are facing extensive waiting times for health and education support. The report, conducted by the Child of the North initiative in collaboration with the N8 research partnership and the Centre for Young Lives think tank, highlights the difficulties parents face in navigating a complex support system that is plagued by delays and long waiting lists.
As the number of children accessing autism services reaches an all-time high, the report emphasizes the urgent need for a “needs-led” approach rather than a reliance on a “diagnosis-led” system. It suggests that early identification should become the norm, allowing for quicker and more effective support without the need for a formal diagnosis. The report argues that with timely support, children and young people with autism and conditions such as ADHD can thrive in mainstream education, minimizing the negative impact on their physical health.
The report also sheds light on the impact of the COVID-19 pandemic on autism assessments, revealing a staggering 306% increase in the number of children waiting for assessment since its onset. Shockingly, only one in ten children receive an appointment within 13 weeks of referral, while more than a quarter of parents have endured a wait of over three years for support.
A parent interviewed for the report described the assessment process as an “absolute nightmare,” highlighting the lack of communication and coordination between health and education systems.
The report’s analysis paints a picture of an overwhelmed system facing unsustainable pressure. It presents alarming statistics, such as a 27% rise in new autism referrals in September 2023 compared to the previous year. Additionally, the number of individuals waiting for an autism assessment by mental health services increased by 34% between July 2022 and July 2023, reaching over 143,000.
The report warns that the failure to provide adequate autism support can have detrimental long-term consequences for autistic children, including a higher prevalence of connected conditions like mental illness and an increased risk of school exclusion. It emphasizes the protective effect of a diagnosis and subsequent support, as children with a diagnosis are less likely to be excluded from school compared to those awaiting assessment. However, with waiting times on the rise, there is a growing concern about the impact on education outcomes, with many autistic children ending up in costly alternative provision.
One major barrier identified in the report is the perceived requirement for a medical diagnosis of autism before accessing support, resulting in some children being denied the assistance they need. The report makes three key recommendations to the government in order to address the crisis effectively. These include building partnerships between education and health professionals, providing mandatory professional development courses to improve understanding of autism, and establishing formal partnerships at a local authority level to prioritize a data-driven approach to improving support.
Anne Longfield, Executive Chair of the Centre for Young Lives, expressed her concern over the record-high number of autistic children seeking support and the detrimental impact of long waiting times on their well-being and education. Urgent reform is needed to ensure that the needs of autistic children are met and their life chances are improved.