Opinion: the impact of waiting years for assessment and essential therapies is catastrophic for all involved

Dublin airport queues have dominated social, national and international media recently, with many people expressing outrage at the mismanagement of this system. The plight of these unfortunate travellers has been visually documented with photos and videos depicting thousands of people waiting in line.

But what about the other horrifically long queues we have in Ireland? There are no photos or videos in widespread circulation of these, but the impact of such waits is much more catastrophic. This is the reality for many autistic children and their families. What if we had this visual representation of children whose needs for assessment and essential therapies are not being met for a substantial period of time?

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From RTÉ Radio1's Brendan O'Connor Show, RTÉ presenter and member of the Hothouse Flowers, Fiachna O'Braonain and his wife, Síona Uí Bhraonain talk about the challenges of being the parents to a child with autism.

Jade is 7 and has been on a waiting list for 2 years for occupational therapy and child psychology. Anxiety is crippling for Jade and this means she has not slept a full night since she was born. Jade will wake up screaming 5 – 10 times every night. Jade’s Dad sleeps on her bedroom floor so he can reassure her as soon as she wakes and help settle her back to sleep. Jade’s Dad has had to give up work as he was unable to keep his job after being awake all night.

Invisible queues exist where some children are waiting for the most essential therapies for up to and beyond three years. For children, the timing of intervention is even more significant as they navigate their formative years. A 14 year old who is having daily meltdowns lasting 2 hours or a 6 year old who is pre-verbal need these essential therapies now.

Tommy is 13 years old and is waiting 1.5 years for therapies since his Autism diagnosis. Some days Tommy can’t go to school, as he feels so overwhelmed and anxious. When he does attend school, a change in routine, teacher or classroom can result in a meltdown and Tommy must be collected immediately. Tommy’s mother cries almost everyday when trying to get him to go to school. She knows how hard it is for him to cope with, but is equally aware that this is the only respite she gets.

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From RTÉ Radio 1's Liveline in 2019, show listener Fay Hayden has been fighting for 5 years to get a care plan for her autistic 10 year old son.

Autistic children may face difficulty with language and interaction, coping with change and in executive functioning. Intervention aims to empower autistic children to navigate their day to day lives and the multiple challenges they face more easily.

Some of the services autistic children are on waiting lists for include speech therapy, occupational therapy, physio therapy, psychology and psychiatry. This means that these children are in limbo, have additional needs which are not being addressed and are missing significant developmental milestones as a result. Furthermore, some autistic children will age out of any service, prior to being seen.

Jack is 6 and an only child. It’s just Jack and his Mom most of the time as Jack’s outbursts and violent meltdowns mean that family and friends no longer visit or invite Jack to events. Jack is on a part-time timetable in school due to his behaviour and support needs. Jack is awaiting a psychology appointment for 1.5 years and his Mom has been advised that the current waiting time is estimated at 4 years. Jack’s Mom is on both anti-anxiety and depression medication as she finds it increasingly difficult to cope with Jack’s needs, with no support, services or therapies. Their GP has been their only point of health service contact since Jack’s diagnosis at age 4. Jack wonders why his Mom looks so sad all the time.

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From RTÉ One's Six One News, campaigners have crititicised the Government's proposal to accommodate children with autism in schools

So why aren’t parents of autistic children taking to the streets and shouting from the rooftops about the injustice they are facing? Because many are struggling on a daily basis to meet their child’s needs with no support. Most have no childcare and many are beyond exhausted from fighting and advocating for their child that have no fight left. Those who can afford it source private therapies, but even these services are few and far between in terms of availability.

Ava is 17 and was diagnosed as autistic 1 year ago after a suicide attempt. After a short hospital stay, Ava is now back home with her parents and awaiting therapies to help her cope with chronic insomnia and low mood. Ava can stay in her bedroom for days at a time and not interact with anyone. Ava’s parents are beside themselves with worry and are begging for help. They know that once Ava turns 18, she will age out of children’s autism services, and have no alternative other than adult psychiatric services.

So who will be our champion and address this glaring omission of care for autistic children in Ireland? We need our government to rectify the persistent social injustice faced by autistic children now.


The views expressed here are those of the author and do not represent or reflect the views of RTÉ