Topic: Inclusivity 26 Mar 2019
Author: Neil Cubley
Tags: Autism

“Am I like ‘Rain Boy?'”

Bank of Ireland World Autism Day6 MIN READ

Vincent and Irene Brennan have three children – Conor, Caoimhe and, their youngest, Donal.

Donal seemed to be developing perfectly for the first year or so of his life. Just like Conor and Caoimhe had.

‘He had really good eye contact,’ Vincent says. ‘He sat up, did all of the things you would expect of a young child and he started to acquire words.’

Then, when Donal was around one and a half years old, all the words he had learned simply disappeared.

He became insular and very patterned in the way he behaved.

‘He would run down the hallway in the house looking at the railings on the radiator as he went by and he would line up all his toys. It all seemed quite strange,’ Vincent says.

Vincent and Irene knew that something had happened to Donal but didn’t know what.

Waiting to get a diagnosis

The state assessment programme was very slow and it was taking a while to get a diagnosis but then a chance meeting led to a helpful tip.

‘We were fortunate to bump into a parent who recommended a consultant in London.’

Donal and Vincent flew to London where Donal was diagnosed at 5.5 on a scale of 1 to 10 on the autism spectrum.

‘It was a bad day and a good day,’ Vincent says, of the day Donal finally got a diagnosis.

Bad because there’s no ‘cure’ for autism. Good because as soon as Vincent and Irene knew exactly what was wrong they could get start to get Donal what he needed.

After the diagnosis of autism

Life became centred around Donal.

Donal’s mother, Irene, (‘she is incredibly resourceful,’ says Vincent) pursued the different interventions he needed starting with early language intervention.

She managed to get him into the Red Door School which describes itself as a school ‘for children with autism and complex needs’.

The school used Applied Behaviour & Analysis (ABA) techniques which involve identifying individual behaviours that might be changed then breaking them down into small, bite-size chunks and rewarding children for carrying out each new step in the process.

Vincent compares it to the way parents teach a child to tie a shoelace.

‘You break it down. You tell your child to pull the first lace across, that’s one chunk, then to pull the second lace this way then loop it and do it again.’
The learning process might take ‘five, ten, fifteen times longer than somebody else’ but once people with autism learn it they have it.

When Donal saw ‘Rain Man’

‘We try to keep a balance,’ Vincent says, ‘but it is always a bit unbalanced because where we go, what we do, where we eat etc. all accommodate Donal’s preferences. It has been and is always tough for Donal’s siblings.’

When Vincent and Irene decided they wanted Conor and Caoimhe to understand that Donal would always have autism they decided to best way would be for them to watch the movie ‘Rain Man’.

But what was the right age for them to see it? And how would they react?

They thought carefully about it and eventually showed it to them when Conor was 12 and Caoimhe 10.

‘Well they just fell about the place watching the movie saying, ‘oh, that’s so Donal’ when they saw all the idiosyncrasies and behaviours of Dustin Hoffman’s character.’

Then, while they were still watching the movie, Donal came in.

He listened as Dustin Hoffman or ‘Rain Man’ repeated the same phrase over and over.

‘And Donal asked, ‘why does he keep repeating the same thing he’s saying?’ Vincent says.

‘Caoimhe said to him, ‘but Donal, you do that all the time.’

‘And Donal said, ‘oh, so am I like Rain Boy?’

Vincent remembers Donal’s psychologist at the time saying that Donal becoming self-aware of having autism was a huge achievement.

‘It was moving and profound, in its way,’ Vincent says.

“Do we have any more Dublin jerseys?”

Donal’s way of coping is to be in control.

‘Typically,’ Vincent says, ‘people describe it as rigidity and routine but what we’ve learned is that Donal uses it to take control of the situation he’s in.’

Vincent is keen to point out that Donal can change, but any change has to be discussed in advance, described in detail, and trialled before it can be attempted. He gives me an example.

‘I’m a mad Mayo football supporter and Donal’s mother is from County Meath.’

Vincent and Irene wondered if Donal might get into GAA if he went to watch a match but because he’d never been before they needed to prepare him.

‘We rehearsed going to Croke Park for weeks before actually going,’ Vincent explains. ‘We explained the rules simply to him. We gave him a little scoring sheet so that he could understand the scoring system’.

The couple showed him photos – Donal learns best from visuals – to give him a sense of where he was going and to reduce his uncertainty about the new experience.

‘He came dressed in all the Mayo gear with myself while Irene and Caoimhe, who’s a mad Dublin fan, came in the Dublin colours.’

10 minutes into the game, things were looking pretty bad for Mayo as Dublin were already up 2-4 to no score.

‘I was completely absorbed and frustrated by the match,’ Vincent says. ‘I had forgotten about Donal. Eventually I turned around to see if he was showing any interest whatsoever in the match. He looked up at me and he said, ‘do we have any more Dublin jerseys?’

Donal and Vincent regularly go to games now. Unsurprisingly, Donal mostly wants to go to games when Dublin are playing.

‘But it just shows,’ Vincent says, ‘that Donal is able to develop new interests if we create a certain level of structure around them and help him to interpret them.’

Bank of Ireland World Autism Awareness Day
The gift of ‘gevoid’

Where Donal has behaviour challenges, they typically fall into one of two categories which Donal has named ‘gevoid’ – a combination of the words ‘get’ and ‘avoid’. He loves fusing words like this.

‘Donal will get frustrated when he wants something and he has to get it right now,’ Vincent explains, ‘and his behaviour may become challenging. The other side is when he is in an uncomfortable environment that he wants to avoid. Donal reacts by being demanding in order to take back control.’

‘Gevoid’ has become a useful trigger word for the family.

‘If Donal is being awkward or stubborn, I can say, ‘Donal, gevoid’ and we can then have a conversation. ‘Is there something you want to get or is there something you want to avoid or control?’

Vincent says that he can get frustrated with Donal’s behaviours at times and, as a result, react in the wrong way but ‘gevoid’ can help him as well as Donal.

‘’Gevoid’ is a useful reminder to me, too, of how to deal with what I’m seeing and to remind me that it’s usually either one of two things.’

Donal’s knowledge is literally encyclopaedic, says Vincent.

‘His computer crashed one day and we went to Curry’s or one of those places to get it fixed. The guys were able to retrieve the hard disk, save the data and reload it onto something else.

At the end of all this, Donal sighed a big sigh of relief and said, ‘that’s great otherwise I would have had to recreate everything again.’’

It was only then that Vincent realised that, in addition to being stored on the computer, everything was in tables in Donal’s head.

‘It was a fascinating insight,’ he says.

Autism the ‘invisible disability’

Every disability has its challenges and autism is no different.

The first, and one that is sometimes overlooked, is that there are no visible signs that most people with autism actually have a disability at all.

‘If you bump into Donal for that first few seconds he’ll present as able and normal as anybody else.

And then, at times, when he behaves differently, that’s quite a challenge for people because, I suppose, they just don’t see it coming,’ says Vincent.

Autism is often referred to as the ‘invisible disability’ because of this lack of obvious outward signs.

The second challenge is Donal’s limited social interaction skills.

‘When people try to start a conversation with Donal they discover that it just doesn’t work like it does with people who don’t have autism. He can appear abrupt or disinterested. However, if they turn the conversation to something he’s interested in, he might regale them for hours on a particular topic. ‘Star Wars’ is a particular favourite.’

The third challenge is his rigidity.

‘By rigidity, I mean his sense of wanting to be in control in environments which can create obstacles for others.’

Bank of Ireland World Autism Day
Donal’s transition from school to work

Donal is 19 now and in a ‘school to work’ programme as part of the National Learning Network.

‘Donal’s a fantastic young man,’ says Vincent who is proud that Donal has Junior Certs in Maths, English and in Civic, Social and Political Education.

He skis, swims, runs, plays golf and plays tag rugby winning gold medals at the Irish Special Olympics in three of those disciplines in the last couple of years.

Donal has also completed two work placements at Bank of Ireland doing data entry work.

‘The colleagues he worked with said he was ‘very diligent, very capable, self-correcting, and punctual’, Vincent says.

‘They said ‘he completes everything and then wants to go home.’ If you were to describe an ideal employee, well, that’s not bad.’

“Donal isn’t autistic, he has autism”

The difference between Donal at one and a half years old, when he was completely non-verbal, had no obvious communication skills and was very rigid in his behaviour, and today is incredible, Vincent says.

But he and Irene, like other parents of children with autism, are very clear about the language they use to describe Donal.

Donal isn’t autistic, he has autism. There’s a difference.

‘It is something that he has acquired rather than something that defines him,’ Vincent explains. ‘When you describe it like that it makes it clear that it is the disability which requires treatment rather than Donal himself that needs it.’

Unlocking potential in everyone

Vincent says that his experience of managing Donal’s autism helps inspire him as the executive sponsor of Bank of Ireland’s Accessibility Network. The Accessibility Network focuses on enabling customers, colleagues and communities to thrive from the perspective of accessibility and disability inclusion.

‘One of the reasons I was delighted to sponsor the Accessibility Network was that I had seen that there’s this amazing ability in everybody if you can just find the way to unlock it and that’s what we’ve been trying to do. Their contribution to an organisation can be massive.

Speaking of the Accessibility network, he says, ‘there’s a whole programme of accommodations we have to make, across the board, in terms of our physical premises, our digital platforms and our people policies.’

In addition, he says that he wants to help encourage ‘an affinity towards the accessibility agenda among colleagues so that people can bring their whole selves to work. I’m really encouraged by the work we are doing and the enthusiasm for everybody involved.

‘If you’ve met one person with autism, you’ve met one person with autism’

A recent assessment reminded Vincent that although Donal has progressed hugely the fundamental challenges that autism poses for him are still the same.

‘The challenges and how to help him overcome them haven’t changed,’ Vincent says. ‘It’s just the stage he’s at in life that changes.’

Experts are still unsure what causes autism and there is still no cure.

However, what they can agree is that, because autism is a spectrum, everyone who has autism is different.

There is a saying, popular among people with experience of autism, that illustrates this. ‘If you’ve met one person with autism, you’ve met one person with autism.’

As Vincent is keen to emphasise, the challenges that people face do not define them.

Everyone, whether they have autism or not, has the potential to thrive if we can just accommodate their needs and assist them to contribute their unique gift to the world.

Find out more

To find out more about inclusion and diversity at Bank of Ireland click here.

For more information or for help with autism, please visit the Irish Society for Autism website.

By clicking on the link to the Irish Society for Austism you are leaving the Bank of Ireland website.

Topic: Inclusivity 26 Mar 2019
Author: Neil Cubley
Tags: Autism

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