(UK) NI: One in 17 students is autistic; 16,000 waitlisted for diagnosis

May 24, 2025, Irish Times: ‘Through that nightmare of a tunnel’: the long wait for autism assessment in Northern Ireland

Almost 16,000 children in the North await assessment, new figures show - the longest delay is more than four years

When Katie McGarry was six years old she begged her mother not to send her to school.

It was 2021, Covid lockdowns had ended and Katie was among 5,000 children placed on a waiting list for an autism assessment in Northern Ireland.

Each morning was an ordeal.

“It was horrendous,” recalls her mother Briege McGarry.

“I was physically trailing her outside the door. The school kept saying that they didn’t know what I was talking about because she was so quiet in the classroom. But she didn’t want to go. She kept telling us she didn’t feel safe.”  . . .

Identified for suspected autism by a school nurse, it took four years for Katie to receive a diagnosis and only after her family resorted to a private consultation costing £400 (€476)  [$541] for an hour-long appointment.

“It ended up a real struggle for her, I had to remove her from mainstream school,” she said.

After getting her daughter diagnosed by the NHS just after he seventh birthday, Briege faced the struggle of having Katie statemented – officially assessed as having special education needs – to get her support in school.

As teenage campaigner Cara Darmody picketed Leinster House in Dublin this week during a 50-hour picket over the backlog in autism and disability assessments, there is growing concern about soaring waiting lists in Northern Ireland.

Figures obtained by The Irish Times show that almost 16,000 children across the North’s five health trusts are awaiting an autism assessment by NHS specialist teams. The longest delay is four years and two months in the Belfast trust, a development the trust says it “regrets” and attributes to capacity issues.

Depending on where you live, waiting times differ dramatically with young patients in the Southern and South Eastern trust areas having much quicker access to specialist teams following a referral from their GP, school nurse or health visitor.

In total, some 15,940 children are on the North’s waiting list for autism assessments, with the largest number (4,875) in the Northern trust where almost a quarter of Northern Ireland’s school age population live; this is followed by the Belfast trust (4,487) and then the Western trust, which stretches from Derry to Omagh, and where 2,686 children are waiting to be seen. . . .

For Autism NI, a campaigning charity set up more than 3O years ago to support families, the spike in autism prevalence rates in the North has not been matched by government investment in services.

“Early intervention is the key to everything. If you get in there early with the child you can support them and get the parents to understand them better, through structure and developmental needs,” said Kerry Boyd, who heads up the charity.

“That’s why these waiting lists need to be cut down; we can’t have children waiting until they’re eight years of age for a diagnosis. At that stage they’re probably not wanting to go to school any more.”

Last week, Stormont’s department of health published a report showing that 5.9 per cent of school-age children in Northern Ireland received an autism diagnosis in 2024-2025 – more than triple the figure in 2015.

Increased awareness and the introduction of the Autism Act (Northern Ireland) 2011 and the Autism (Amendment) Act (Northern Ireland) 2022 have been linked to the rise. . . .

Boyd says the rate in Northern Ireland has gone from one in 100 school-age children 10 years ago to one in 17 today.

“We’ve got possibly one of the highest rates in the world,” she said.

“We have the best, the most comprehensive piece of single disability legislation, with the Autism Act. But there’s no point in having this legislation if they’re not going to follow it through. . . .

Autism NI received 8,000 calls to its helpline over the past year from parents “at the end of their tether”. Many are home schooling their children.

These children are not counted in the department of health report, which means the prevalence rate is “even higher”, according to Boyd. . . .

 “Our system is not set up to enable people to access the care they need.” . . .