Parents in Northern Ireland are increasingly paying for private autism assessments for their children, with more than 17,000 now on a waiting list.
Autism NI CEO Kerry Boyd said that waiting times for autism assessment had now reached “a critical level” with both children and adults waiting up to five years within some health trusts.
“I believe that there needs to be a complete overhaul of the autism assessment process, and the Minister for Health needs to lead on this as a matter of urgency,” she said.
Autism NI CEO Kerry Boyd has called for a complete overhaul of the assessment process. (Brendan Gallagher)
“As waiting times have increased over recent years, some parents and adults are being forced to pay privately for an autism diagnosis.
“However, having to pay privately for an autism diagnosis is causing health inequalities within our health system that cannot be ignored.”
She said those with a private diagnosis received quicker access to support, but those on longer “statutory” lists were waiting years for the same support.
“No family or person should be at a disadvantage because they cannot afford to pay for a service that should be provided free of charge, and within a timely manner, by our Health Service,” she said.
With “a very clear target” of 13 weeks for recommended waiting times, she said this was being breached on a daily basis.
“But the real concern is that there does not seem to be a plan in place to address this crisis. The last investment in autism assessment services was back in 2016 when approximately 1 in 50 children had a diagnosis of autism, but today that figure stands at 1 in 17,” she said.
“Therefore, why has there been a failure by the Department of Health to inject more money into this area when they know that there are more autistic people and families seeking supports?
“The Department of Health and NI Executive need to tackle these waiting lists head on and give our autism community the support and services it so badly needs.”
The Department of Health figures were disclosed after an Assembly Question from the DUP MLA Deborah Erskine.
There’s a total of 17,205 children waiting for diagnosis, including over 5,900 in the Northern Trust, over 4,500 in Belfast, more than 2,500 in both the South Eastern and Western Trusts and over 1,600 in the Southern Trust.
The written answer from the health minister Mike Nesbitt acknowledged that services were not keeping up with a “significant increase” in the number of children referred for an autism assessment.
Recent actions to improve services include publishing a new consultation in May – the Children and Young People’s Emotional Health and Wellbeing Framework – with the aim of allowing earlier offers of support.
Plans are also ongoing with the Public Health Agency and Child Health colleagues to develop regionally defined neurodevelopmental pathways.
A dedicated lead for adult autism was also appointed in March 2025 to improve services with trusts.