About one in 20 schoolchildren in Ireland now have an autism diagnosis. That’s more than three times as many as the start of the decade. Adam Harris, the founder and CEO of AsIAm, Ireland’s autism charity, says that the increase in the number of children accessing an autism diagnosis is “something we really should be welcoming”.

“It means we’re better able to identify a person’s needs at a younger age and make sure that they receive the support they need and that they have a self-understanding of who they are,” Adam explains. “However, the system has not been scaled to sustain that demand, and too often, we see a scenario where the needs of autistic people are not prioritised.”

Every parent in the State who thinks their child may have a disability has a right to have their needs assessed under the Assessment of Need (AON) process. That right is set out in the Disability Act of 2005, which requires the State to conduct an AON within a six-month time frame. In reality, the State is failing to achieve that objective.

In a statement, a spokesperson from the HSE told Irish Country Living that 1,516 AONs were completed in the second quarter of 2025.

The spokesperson said: “Meeting the increasing demand for Assessment of Need within the required timeframes continues to prove challenging, as the demand outstrips capacity.”

They revealed that: “In Q2 2025, 12% of assessments were completed within the timeframes set out in the Disability Act 2005 and accompanying regulations.

“The total number of applications ‘overdue for completion’ at the end of Q2 2025, is 16,593.”

That’s over 16,000 families across the country still waiting to access an assessment.

Dr Rebecca Quin, principal clinical psychologist who works privately in Co Dublin, describes the aim of the AON as finding out “if a child’s experience of the world is in line with an autistic experience”. She says, “A full autism assessment is completed by a multi-disciplinary team and can take 30-35 hours.”

Dr Quin explains how receiving a formal autism diagnosis benefits children and parents: it is required to access publicly funded supports (including HSE-funded therapy), to access an autism class or special school placement, and a diagnosis also enables disability allowance applications or carer’s supports.

Dr Quin adds a diagnosis can also help with a child’s sense of identity, belonging and can be validating for parents too: “I’ve seen a lot of parents where often the diagnosis is quite validating and it helps them to understand what’s been going on all along,” she says.

Advocating for her children

Dr Quin’s comments reflect the experience of mother-of-two, AnnMarie Walsh from Athy, Co Kildare – one of many parents across the country who have waited years for an AON for their children. For her son Jake (16), that battle began almost a decade ago.

Jake is autistic and has also been diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and general anxiety disorder (GAD). Her daughter, Erica (13), is also autistic and has ADHD.

Her first concerns arose in 2016, when Jake was seven years old and in second class attending primary school.

“He displayed what many would describe as ‘typical’ autistic behaviours — lining up toys, avoiding social interaction, struggling with loud noises or busy places,” AnnMarie recalls. “He became withdrawn, socially anxious, and was finding the demands of school, and the school environment, almost unbearable. He clung to the door frames, crying as we brought him in. Each day I collected him I was told he was fine. But he wasn’t.”

This is when AnnMarie started questioning things officially in school and requested an AON. The answer was no.

“I was told ‘there’s nothing to worry about – he’s doing well’, simply because his academic scores were very high.”

“When he was nine and in fourth class, I asked again for an AON as he was still struggling in school and his anxiety was worsening at home. I wanted to start preparations for his transition to secondary school. But the reply was the same – wait and see’.

“It put us in a very difficult and stressful situation,” says AnnMarie “an AON is required before a child can access support and resources – and Jake was getting none.”

In 2019, AnnMarie took matters into her own hands and filed her own AON application. However, months later, COVID-19 struck, which put it on hold. She began home schooling her children. Contrary to many parents’ experiences during lockdown, they excelled.

“We were happy in our own little bubble. That’s when I realised the problem wasn’t at home – it was in school,” says AnnMarie.

Breaking point

By 2021, Jake was now 12 and starting secondary school. Two weeks into term, he stopped speaking to anyone outside the family. AnnMarie says the transition was excruciating. “While other children settled back into school, it felt like the bottom fell out of our world. He was still struggling in unsuitable classrooms and missing out on key years of his education due to the delay with the AON process, it was simply too overwhelming for him at school.

“I didn’t know what the hell to do, because he couldn’t go back to school. He couldn’t speak. I needed help. He needed help.

“I hear the term ‘school refusal’ a lot and it unfairly implies the child or young person has a choice,” says AnnMarie, “when in fact they are actually unable to tolerate school without the adequate support in place.”

At this point, study and home schooling full-time became the clear choice. “Once we took school off the table altogether, there was an instant change in Jake and he threw himself into his studies again and began to thrive. He loves routine and structure so we followed the school curriculum – one which suited him – and he was happier and much more comfortable in himself.”

Jake had been waiting for an AON through the HSE for five years at this stage. Five years seems long but unfortunately this is not uncommon.

Dr Quin says: “I see those waiting times in parts of the country.”

Years-long delays not only prohibit a child’s access to appropriate services, supports and school attendance, but they also “lead to missed opportunities for appropriate educational environments,” explains Dr Quin.

“You cannot expect a child to attend school in an environment that really is not suited to their nervous system. So you get this big rise in school non-attendance and increased anxiety and self-esteem issues because the children just don’t have a framework within which to understand themselves and neither do their parents.”

Paying for help

Meanwhile, the Walsh family chased every possible avenue for help and decided to pay for a private autistic assessment. These cost somewhere in the region of €1,000 to €3,000.

Jake finally received an autism diagnosis as a result of private care but AnnMarie, previously a stay-at-home mum, had to go back to work part-time to help pay for the assessment. She estimates the family have spent around €6,500 over the years on private assessments for both Jake and Erica. That number excludes school admin fees, school materials and uniforms which she buys every year in case they decide to return to school.

2021 was also the year that AnnMarie applied for support from CAMHS [Children and Adult Mental Health Services] for her son. This was a desperate cry for help – and one which was, again, refused.

“I was crying down the phone, I don’t mind saying I had a breakdown.

“We got a refusal letter that Jake wasn’t severe enough for CAMHS. That was another blow. He’s not going to school, he’s not speaking, he’s not leaving the house. At the time, he wasn’t washing. He was barely eating. What’s severe enough?”

After three more years of applying for psychology support for Jake, he eventually got referred back to CAMHS in 2024. AnnMarie describes this as “a full circle in four years”, and when Jake was seen by CAMHS, he got a diagnosis for ADHD.

Receiving an official autism diagnosis in 2021 meant that Jake secured a place in the autism class at school. AnnMarie describes these places like “gold dust” and Dr Quin says, “they can really significantly alter the trajectory of a child’s education.”

But, unfortunately, AnnMarie says this place came “way too late – the damage was already done”. Jake could not go back to school so she continued homeschooling him, which she still does today.

“I think if we had been listened to when Jake was six or seven, his life would have been so different. By the time he got to secondary school, it was way too late,” she says.

Now a licensed trainer with AuSome Training Ireland, an autistic-led neurodiversity training provider, AnnMarie delivers courses to parents and family members of autistic children and teens.

See ausometraining.com or annmarie.cothu@gmail.com.