Making sense of Ireland’s neglected autism crisis

Sarah Reilly is part of an independent team that took on the task of documenting Ireland’s autism crisis. Now they’re lobbying a Brexit-addled Government for funding of a national care programme.

Stacked in front of me to nearly the entire width and length of the wall are hundreds of blue cases files. Some are damaged with pressure marks, minor tears and creases from laying mainly dormant for years.

A teddy bear, a dumper truck, miniature aeroplanes and Lego sets sit next to thick compendiums and mental health diagnostic manuals.

“We’re the data HQ of autism in Ireland. We organise the information that’s been begging to be collected,” says research assistant Sarah Reilly.

I’m in the office of the Autism Research Group, a team dedicated to analysing data provided by surveys, inter-disciplinary reports, and clinical diagnostic tests with autistic children.

And organise they have. Last summer, Reilly was part of a group that toured the country to set up registries where parents could also voice their frustrations about the sparse government support they receive.

“Some of the stories I heard, you just wouldn’t believe,” she says. “People were screaming and roaring at me because they assume you’re with the Government.”

Certainly not Government officials they might be, but they did issue a report to Katherine Zappone last autumn, saying that Ireland needs structures in place urgently to tackle the crisis.

The Autism Research Group’s report for Katherine Zappone last autumn detailed the struggles of parents across the country

Other priorities

So what’s happening in the meantime? “Now that we’ve built up an accurate picture of the situation – county-by-county, town-by-town – we need to use this as leverage for space in the government budget,” says Reilly.

The plight of these families has gotten more publicity over the last year, as programs such as RTE’s ‘Autism and Me’ have highlighted this subset of Ireland’s healthcare crisis.

Unstable happenings at Leinster House haven’t gotten hopes up, however, as politicians have other priorities. “People are angry, exhausted, and out of pocket”, says Reilly.

“Even at recent meetings where we’ve announced all this progress we’ve made, people still cut us to shreds. Desperate people are looking for someone to blame, but we’re the ones actually trying to help them.”

A pause. Reilly seems stuck for words.

Inside the case files

“It’s best if I just show you.” She pulls down one of the blue cases and sticks the DVD inside the drive. There’s a concerned look on her face while she pours over the file notes, waiting for the disk to load.

A boy with a rigid demeanour appears seated at a table and engrossed in a puzzle, and the examiner invites ‘Richard’ to demonstrate using gestures how to brush one’s teeth.

“Yeah, sure! No problem,” he says in a strong American accent. The look of concern turns to one of endearment on Reilly’s face.

“He’s from the States?” I ask. “No, no, a lot of them speak with a foreign accent and we’ve no idea why. Listen to his pitch as well, see how it jumps up and down?

“A lot of the children find that incredibly difficult to do,” Reilly says. “Many barely lift their hand towards their mouth, never mind using words to describe the act.”

Imagination can be completely absent for some, and ‘pretend’ is not in their proverbial dictionary.

While ruffling his hair and with eyes pointed at the ground, Richard makes a request for more pieces. “See that? That’s really significant. It means he has vital inter-personal social skills and an understanding of personal space,” says Reilly, with a spark. “A lot of other kids would just grab the pieces and not think twice about it. So that was high-functioning autism, let me show you the other end of the scale.”

‘Mark’ ignores the examiner and races from top to bottom of the room, howling and flapping his hands vigorously, completely in his own world. He’s nine years old and can’t speak a word.

‘Nobody listened to me’

Reading over the team’s report for Zappone, the fears of parents and researchers are unambiguous. The early years of a child’s life are “critical to the development of future skills and knowledge”, and Ireland’s extreme lack of services means that parents spend years on waiting lists for diagnostic appointments and speech and language therapy.

After years of struggling alone, it’s too late and the opportunity for early intervention is missed. “Nobody listened to me for a long time,” said Mark’s parents in the case file.

“Around half of all people with autism never learn to speak. Some just can’t and there’s nothing you can do about it, but we absolutely have to help those whose potential is under threat of being missed. There’s simply no excuse,” says Reilly.

My time is limited of course, Reilly was open to an interview so long as it wouldn’t interfere with her schedule of number-crunching and statistical aggregation.

And so I leave her to the industrious solitude that is her day-to-day working life in this office. “Our work here could mean the difference between people living with relative autonomy and independence or not, and that’s what keeps me going.”

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