Call for National Plan to Address Autism and ADHD Assessment Delays
A Scottish Parliament committee has called for urgent measures to enhance the assessment process for autism and Attention Deficit and Hyperactivity Disorder (ADHD). The health, social care and sport committee advocates for a national strategy to guarantee that individuals with autism and ADHD receive clear and consistent support across all health boards in Scotland.
The committee expressed concern over prolonged waiting times for neurodevelopmental assessments, noting that some health board areas have even closed their waiting lists.
On Sunday, the Scottish government announced an additional £3.4 million investment aimed at improving access to neurodevelopmental support for children, young people, and their families.
Personal Impact: A Family’s Struggle with Long Waits
Abbie McNeill, a mother from Dumfries and Galloway, is currently facing a wait of up to three years for autism and ADHD assessments for her two youngest children. Her sons, two-year-old Dalton and three-year-old Grayson, are among thousands of children on the waiting list.
Abbie, a mother of four from Lochmaben, shared with BBC Scotland News the immense stress caused by the wait, which has led to hair loss.
"They are presenting two completely different challenges," Abbie said. "Dalton is presenting with the more autistic traits, whereas Grayson is very much behavioural challenges."
A diagnosis is often essential before families can access tailored support from social work services or schools.
Abbie’s youngest son has a rare genetic condition and is currently unable to talk or walk unaided. He experiences hypermobility and vacant episodes. There is a 50% chance that Grayson may also have the hereditary condition, 16p13.11 microdeletion syndrome.
"Having an NDAS (Neurodevelopmental Assessment Service) diagnosis for both of my boys would very much give clarity for everybody involved. From staff at school so that they're given the right support, to things like whether we need a blue badge for transport for Dalton and financial support too," she explained.
With no clear timeline for assessments, Abbie reported that her own mental and physical health has deteriorated. Her relationship with her partner has ended, which she attributes to the relentless stress.
"Every night I lose sleep with worry," she said. "My hair is starting to fall out to the point I now have to wear hair pieces, which has impacted my confidence massively. It's like living in emotional hell."
Waiting List Statistics and Regional Variations
Currently, 2,235 children in Dumfries and Galloway are awaiting NDAS assessments, according to BBC Scotland News statistics. Most children in this region wait between two and three years, with nearly 150 cases exceeding three years.
Data presented to the health, social care and sport committee last year indicated that 42,000 children across Scotland were on waiting lists for neurodevelopmental assessments. Waiting times vary significantly by health board, ranging from one year in the Western Isles to six and a half years in Ayrshire and Arran.
Advocacy and Calls for Reform
Abbie has initiated a petition urging local and national governments to urgently reform the NDAS system.
"The families who have reached out and told me their stories have been quite harrowing and I've been in tears," she said. "For those children who are neurodivergent, there are challenges. This system that is in place, NDAS, is failing them all massively."
NHS Response and Committee Findings
NHS Dumfries and Galloway acknowledged that its waiting list reflects a broader issue of high demand and limited capacity across Scotland, with considerable pressures on services.
A spokesperson stated:
"Families in Dumfries and Galloway are given clear information about expected waiting times at referral, and we work to keep them updated throughout the process. We are actively working to improve the situation through a new, co-designed neurodevelopmental assessment pathway."
The Scottish Parliament’s health and social care committee recognized the unprecedented demand for neurodevelopmental assessments and the necessity of implementing certain thresholds before referrals are made. However, it cautioned that this could be perceived as "gatekeeping," potentially causing further delays in accessing assessments and support.
The committee's report highlighted evidence that extended waiting times can lead individuals into crisis, increasing the complexity of required support and placing additional strain on services. It also noted that some may resort to paying for private diagnoses, risking the development of a two-tier system.
Committee convener Clare Haughey commented:<...
