LOOKING BACK ON a week consumed by Ming Flanagan’s mobile phone habits and shamrock-filled ceremonies across the globe, it is easy to be cynical about the work being carried out in Dáil Eireann.
But on a day – a Friday, no less – this month, one mother heard details of a plan that could relieve the stress and worry that has weighed her down for the past twenty years.
Bernie Galligan’s son Conor lives with autism, a hidden condition that is neither an intellectual disability or a mental health disorder. It is its own entity that Irish law does not provide for.
“Stuck between a rock and a hard place” is how TD Michael McCarthy describes it.
Conor is now 20 years old and goes to college at the National Learning Network in Letterkenny. He is one of the lucky ones, according to his mother, in what has been called the “postcode lottery”.
The facilities there are fantastic and the family are “very happy” with the everyday skills he is picking up. He is learning how to become independent and “let go of the apron strings” – just like every 20-year-old man in Ireland’s third-level institutions.
“I am learning how to cook, skills and doing some sports,” Conor told TheJournal.ie. “This week it was snooker and football.” (He prefers snooker because he’s better at it)
But Bernie and Conor know they have been fortunate.
“I am aware a lot of people who are in a different position. Once their child turns 18, they ask, ‘What now?’
“That should never be the case. They should know where their child is headed. It is stressful enough without having that uncertainty.”
It is the uncertainty that Deputy McCarthy wants to eradicate in his Autism Bill, a piece of legislation which will put an obligation on the State to provide services for adults living with ASD.
“Parents face a cliff edge when their child turns 18. Whatever services existed are gone, there is nothing there and we need to address this specific anomaly and bring continuity.”
The Bill he brought to the Dáil earlier this month will provide an autism strategy that puts a legal requirement on the government to ensure there is access to housing, education, training and healthcare services for those with autism.
Bernie and Conor sat in the gallery at Leinster House as the legislation was debated on a Friday afternoon.
“I’ve been thinking it over since then,” she says. “I’m happy that the onus is put on the government. That they ensure that each individual with ASD reach their maximum potential – that their strengths and talents recognised and nurtured, the same as everybody else.”
For her, it means she knows Conor’s rights will always be protected.
“It takes away the stress and worry. You will have a law in your hand and you can tell people, ‘Hold on, you have to help me here.’
“A lot of these children have talents but have never really been recognised. They have been put in with learning disabilities but that is not always the case. Many are gifted at certain things, such as computers and arts. There are a whole lot of areas of excellence so it is not fair to write them off. Everyone deserves an opportunity.”
Isolation
After twenty years, the Donegal resident expresses her gratitude to McCarthy for bringing the issue to the fore as it will make her “latter years a lot easier knowing there is a law to protect my son”.
“I cannot explain how stressful it is living with the disorder. You don’t know where they are going, how their life will pan out. You become a prisoner in your own home.
“The child is isolated in that they are not able to communicate. Because of the difficulty of bringing them to other places, everyone in the family ends up isolated. Parents and siblings.
“I feel strongly for the siblings. They can’t bring their friends around for fear that they may be hit or bitten. Young girls can be particularly embarrassed when they act out while in company.
You could be living in New York City and still feel isolated.
By attending the Dáil sitting, Conor made Bernie an extremely proud mother.
“It was a huge thing,” she explained. “He acknowledged that his name was mentioned. It made me very proud.
“As a mother, you want every child to have an equal opportunity. Perhaps now, they will be recognised the way they should always have been.”
What does she hope the Act will provide for? As well as education, training and other services, the Donegal native believes counselling for the whole family has to become part of the package.
“That has to be part of the care because there are quite a lot of siblings who have suffered as a result.”
She is also hopeful for the inter-departmental approach the legislation outlines.
“There is a need for everyone to pull together and stop passing the buck between departments.”
Political Unity
The Autism Act, which McCarthy hopes will be completed and implemented by this summer, will demonstrate a rare moment of political unity at Leinster House.
On 8 March, politicians from every party stood up in support of the legislation. “It was a great exercise in parliamentary democracy,” claims the Cork TD.
Quite rightly, there was no chance of this being made into a “political football”, added Bernie. “You just wouldn’t go there. It is too serious an issue.”
Such bipartisanship, however, is still to be lauded. As is the idea of a backbencher’s legislation being taken on by government.
McCarthy believes it has not happened since the 1980s, giving praise to Brendan Howlin’s reforms which have allowed for Friday sittings and private members’ bills.
“There are times that you feel like you are fighting against the bureaucratic wind. But the Friday opportunities are significant. As backbenchers, if we have issues there is now a way to purse them.”
He believes the Autism Act will be his legacy, regardless of what else he achieves in his political career.
“I have worked on it for about a year. You look at a mother of a person with autism and you think, this isn’t right. It’s a bit like having a pension between the ages of 65 and 70 and then just having it taken off you. I will always be pleased that we could provide this Act to families but this is just a first step in the journey, not the finishing point.”
And he was given a poignant reminder of that by Conor, who sent him this card with the following message:
“To Michael McCarthy. Thank you for helping all the people with autism. Conor Deeny”
Column: Autism – the ‘hidden condition’ – has been ignored for too long
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