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.”
Today, Katie, now 10, bursts into the livingroom of her family home in west Belfast with a broad smile on her face after returning from school.
She is holding a certificate awarded for her short story – “It’s a ghost story,” she says – that is to be published in a UK young writers’ book.
“She has come from the girl we couldn’t get out the door in the mornings ... to this. She has soared. But it has been a brave, long fight to get here,” said Briege.
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) 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.
There is an 83-day assessment wait in the Southern trust, which includes the greater Newry area, with 1,660 are on the waiting list. The South Eastern trust confirmed it has 2,232 children on its waiting list.
Briege McGarry’s youngest child, Zara (4), is among those caught up in the Belfast trust backlog after a health visitor referred her just before her third birthday.
“I don’t think they could actually give me a waiting list time as it was so long,” said the mother of four.
“But I can’t do anything until I get the diagnosis. They won’t look at you in terms of support. At least I know what’s ahead of me.”
Autism is a developmental disability that can cause social, communication and behavioural difficulties.
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.
Boys are 2.5 times more likely to be diagnosed than girls, according to the latest department of health research, which examined the Northern Ireland school census.
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.
“Statistics are gold; if you understand something you can plan for it. Unfortunately, we’re not planning. It’s so frustrating from our point of view, so much work has gone into getting us here and we know what the issues are.”
Stormont health minister Mike Nesbitt acknowledged that current waiting times for autism assessments are “unacceptable” and said he was committed to addressing this “subject to available funding”.
Pointing to the North’s autism strategy, published in 2023 for the next five years, he noted that each Stormont department has a “role to improve outcomes for autistic people”.
Increased support for autistic adults in light of growing waiting lists is also required, the minister added.
“A commitment within the strategy highlights that individuals and families will have access to early intervention and support,” Mr Nesbitt said.
Last August, the North’s first independent ‘autism reviewer’ was appointed by the health minister to oversee the roll out of the strategy review services.
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.
“We know from the helpline that home schooling is increasing, especially since Covid. Parents feel the school environment is not equipped for their child.”
Face-to-face NHS autism assessment clinics for children in the North were temporarily stood down during the first phase of the Covid-19 pandemic in March 2020, with Zoom and telephone calls instead made to parents and carers for their children’s developmental histories.
Private clinics offered autism diagnostic assessments at a cost of up to £1,400; some health trusts then accepted these referrals back on to the NHS, prompting concerns about widening health inequalities.
“It shouldn’t be the case that people with money can just jump the queue, and that is basically what’s happening,” said Boyd.
At her GP surgery in south Belfast, Ursula Brennan said she was encountering “more unmet need” among parents of autistic children.
This week alone – “and it’s only Tuesday” – she has had four complex consultations with “parents desperate and distraught that they can’t access care”, she said.
“I have children who are eating such a limited variety of food that they’re vitamin deficient. We have families where multiple children, and probably the adults, have undiagnosed neurodivergence as well,” said Brennan, a member of the GP committee of the British Medical Association (BMA) in Northern Ireland.
Brennan’s 12 year-old son is autistic and was diagnosed halfway through the pandemic. He is now in his first year of secondary school and is a talented musician.
“I‘m a GP and member of the BMA but I‘m a parent and my son is autistic. So I‘ve walked the walk with this,” she said.
“Our system is not set up to enable people to access the care they need.”
She says it’s the ability to access diagnosis and “then that opens doors”.
“My son was really only able to understand what autism means when he moved to big school. He said: ‘Mummy, it all makes sense now’. It is extraordinary when you put in the right tools and adjustments that people can just shine,” she said.
In the McGarry home in west Belfast, Katie McGarry is telling her mother how she answered a maths question “before everyone else” in school.
Her mother Briege says she is doing work her classroom are not doing because her classroom assistant “worked at my Katie’s level and she thrived”.
“It meant she could be her wee self. For a while it was just me and her. No one could pour her juice, it had to be me. No one could take her anywhere, it had to be me,” said Briege.
“It’s made me see life completely differently. It’s not all black and white. Katie and me ran through it, we held each other’s hand and went right through that nightmare of a tunnel and got out the other end.”
“But what a world she functions in ... she’s something else.”
