Undiagnosed ADHD: ‘When you act up at school you do feel shame. Friends start falling away’

Eighteen months after Elbha O’Sullivan’s then six-year-old son Cillín was referred to the Child and Adolescent Mental Health Service (Camhs) in Cork, he was called for his first appointment.

Cillín’s life had been in turmoil and, according to his mother, his disruptive behaviour at school was affecting him, other children and staff who were trying to cope with what was eventually diagnosed privately as Attention Deficit Hyperactivity Disorder (ADHD).

“He was unable to sit in the seat, unable to stay in the room, unable to participate in lessons that were not of interest to him. He was running away,” explained the mother of three.

Most heartbreaking for Elbha, Cillín’s behaviour meant that other children steered clear of him and the little boy, who had previously been diagnosed as autistic, had no friends.

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“It is traumatic for a child who is not diagnosed. When you act up at school, you do feel shame. Friends start falling away. You are not invited to any birthday parties, ever. As a parent that is horrible. It hits you in the stomach but you understand that it is his behaviour.”

One family with a child of Cillín’s age did include him in their social circle, for which the O’Sullivans were hugely grateful.

Last February, 12 months after the family GP sought an appointment with Camhs, and with no date for this in sight, Cillín saw a paediatrician at a VHI clinic in Dublin. Following a 3½ hour consultation, he diagnosed ADHD and prescribed medication which, according to the family, has been life-changing.

“We were talked through other options,” says Elbha. “Very luckily for us, in a couple of months we found a mix [of medication] that worked very well for Cillín and since then he has been attending school, he has reached all his academic milestones, surpassing many of them.”

[ ‘A lot of young people with ADHD feel misunderstood by family and in school’ ]

Medication stigma

More importantly for his parents, Cillín is also making friends. “This wasn’t about making sure he will get 500 points in the Leaving Cert,” says his mother. What they wanted was for their “funny, intelligent, loving” son to be able to live his best life.

“He had been sent home from school 13 times in one term. That has not happened once since he has gone on medication,” says Elbha, who believes there is a stigma in Ireland attached to using ADHD medication.

“We were happy to try medication. Because he is autistic, we already knew a lot about occupational therapy and how to calm the nervous system, and we were doing a lot of that work.

“If he had diabetes people would not say, ‘Did you not try anything else?’ We did not just glibly give him a tablet and neither did the paediatrician.”

What he did do, according to Elbha, was listen to her views. “He listened and he told me he believed me and I just started crying.”

In August, six months after Cillín was diagnosed thanks to the fact that his family had private health insurance, Elbha was called to a Camhs appointment, which she kept, believing it is important for her son to be in the system and to have access to multidisciplinary care.

“Neurodivergency is complicated. Cillín, for example, has a high IQ. He is exceptionally academic but he was staying less than an hour in school some days.”

She says the Camhs team were “taken aback” that she had got a private diagnosis and have asked her to take him off the medication for a month so that they could reassess him.

[ ‘People think people with ADHD don’t pay attention. That’s not true. We’re paying attention to everything’ ]

Side effects

Having discussed it with her husband, Elbha has decided it would be “cruel” to return Cillín to that state of turmoil and have him go through potential side effects when coming off the medication before resuming it after a month.

“I said, ‘What do you think I should have done, waited for 18 months, having my small boy further traumatised’?” she asks. “Eighteen months is a long time in the life of a six-year-old boy.”

Elbha says she is aware of other children elsewhere in the country who got a private ADHD diagnosis which was accepted by the service. She has another son, Odhran, who is autistic and has been diagnosed as having ADHD. In both cases, the autism diagnosis was received privately and accepted by the relevant HSE-funded body, the Children’s Disability Network Team (CDNT).

“How can one HSE-funded body accept a third-party diagnosis and another won’t?” she asks.

Cillín has had two appointments with Camhs so far, the most recent on December 8th last.

Due to the fact that his parents have not agreed to take him off the ADHD medication, “which is working for him”, Elbha fears that he will not be kept in the system.

“My children are exceptionally lucky that we have been able to afford therapy privately for them,” she says. Each autism assessment involving a multidisciplinary team seen privately costs €1,500.

“It is not that it is isn’t worth that, but the system should exist publicly,” she says. “I was able to find that money. This is not the case for many people who are making choices about what they spend money on. It should not be as inequitable as that.”

[ ‘Lots of children with ADHD are incredibly creative, but they get perceived as very bold’ ]

‘Unmet needs’

She says children waiting for a year or more for appointments are being failed. “And ADHD kids are in mainstream classrooms. So their unmet needs are affecting everyone in the classroom,” she adds.

In a statement, the HSE said that Cork Kerry Mental Health Services regretted that young people cannot always access the Camhs service “as quickly as they, or we, would like”.

“Long-standing recruitment challenges have faced several Camhs teams in Cork Kerry Community Healthcare which, in turn, has affected waiting time targets,” the HSE said. “Local, national and international efforts are continuing in order to ensure that all available avenues are explored to provide a staffing supply for Mental Health Services, including Camhs services.”

The statement added that the HSE wishes “to reassure young people and their families that urgent cases are responded to on a priority basis”.

“In a crisis situation, we would urge the service user or their family to engage with their GP, community Camhs team or present to the nearest emergency department, where necessary supports will be available.”

[ ‘Living with undiagnosed ADHD, you have this sense that you don’t quite fit’ ]