Conference on Autism

Text of article: The self-discovery of living with autism by Dermot Keyes

Carmel Hennessy stood before the microphone at St. Patrick’s Gateway with calm, understated confidence.

She told the gathering assembled at the inaugural Waterford Disability Network (WDN) Conference on Autism that she’d written down what she needed to say on a sheet of A4 paper. As she shared her story, Carmel spoke from the heart with colour, eloquence and clarity. I suspect there’ll be few better speeches I’ll report on all year.

“I was officially diagnosed as autistic about two years ago, just before the pandemic hit”, she began.

“The signs were probably always there but it wasn’t until I went to the National Learning Network (NLN, on the Cork Road) to do a retail course that things began to fall into place and I began to see others with kind of similar world views. For me, it was like being an ugly duckling and walking in and seeing a load of other swans and thinking, ‘woah, this is interesting’. An amazing journey was about to begin for me.”

Carmel met with a psychologist at the NLN who suggested that she (Carmel) might be on the spectrum.

“I was blown away. At 44 years old, I’d never heard that before and I was very curious to find out more. With Cara Outreach on site, I was able to dip my toe into the water and ask questions before the formal diagnosis… I grew up always feeling out of place. I imagined myself as an alien from a distant planet who was here just to observe humans and to report back to my home planet. I know that sounds silly but for me it was as logical a reason as any as to why I was here.”

Carmel continued: “I experienced the world differently from most of my peers anyway. I loved the character Data in Star Trek, that would have been one of my favourite characters as a kid. Everything had one answer (for Data): it was right or wrong, yes or no, on or off and that just suited me perfectly. No ambiguity, no grey areas. My idea of heaven.”

Admitting to a sense of frustration when people don’t say exactly what they mean, Carmel provided an example. “For example, don’t bother saying to me something like: ‘I wonder is the dishwasher empty?’ If what you actually mean is: ‘Carmel, please empty the dishwasher, it’s your turn’, just tell me what you want me to do and I will do it. I’ll follow instructions.”

Suggesting that she’s not smart – anyone at the conference would quickly rebut this claim – Carmel stated: “Logic was all I could relate to. That’s probably why I studied Electronics in college but that’s another story. I don’t understand feelings and I struggle with them. I like my world to be measured, tangible, functional – no frilly bits, no optional extras – a place for everything and everything in its place. I need things to follow in sequence, no surprises. Others could find that extremely boring but I feel safe when I know what’s coming next and I need that kind of safety and security; otherwise I get overly anxious and overwhelmed.”

When feelings and emotions approach Carmel’s immediate radius, “then it quickly goes off or beyond my pay grade. I don’t understand what is going on or what to do about it. As a child, I couldn’t express what this confusion was. It was just frightening. I knew something was wrong. If somebody followed me and asked me what I was feeling or what was wrong, I couldn’t explain. I just didn’t have the language to explain… and I still struggle to recognise the difference between thinking and feeling anything.”

Carmel spoke of her good fortune in having wonderful parents who taught her right from wrong. “In general, there wasn’t much ambiguity at home. The rules were clear and I’m most grateful for that… I don’t like touch or when people hug me but at least I can say that now and decent people will understand and not be offended by it. I don’t pick up on nuances very well and often miss the  secret language neurotypicals just seem to know instinctively… I now enjoy dry wit and irony, just like my father did, who I’ve a funny feeling possibly was on the spectrum.”

She continued: “Learning that I’m on the spectrum and that there are others like me has been amazing. I am not an alien, a freak or a misfit and while others operate differently to me, there are strengths on my side too: I am very honest, dependable and reliable; conscientious and for better or worse, I tell it as it is.”

Enjoying her part-time job with WIT (thanks to work experience secured through the NLN), Carmel said: “It was a good way for me to get it because I wouldn’t be able to sell myself necessarily very well in interviews. But give me a chance and you will see how hard working and reliable I am when it comes to doing my job.”

Sharing a house at present with a view to having a place of her own in due course, Carmel can also drive, something she didn’t immediately relish. “But the way I saw it eventually is that driving is a set of rules and logical steps and that’s everything I like. Rules and logic and that suits me fine.”

Fellow speaker Des McGrath (46), a father of three who works five days a week as a delivery driver for “a successful Tramore bakery”, was diagnosed with autism aged 43.

Des said being asked what it’s like being an autistic adult makes him laugh. “Honestly, I couldn’t tell you because I am autistic. I don’t know what it’s like not to be autistic.”

Looking back, Des said he has always felt “a little different to everyone else and I include my siblings in that; I’ve always been the black sheep of the family.”

His late diagnosis represented both “a blessing and a curse. I’m actually glad it came when it did because I was never treated any differently by anyone, my parents, anybody, so I was trying to mix and grew up like everybody here. It was hard, I’ve struggled a lot since I was a kid. Primary school especially was quite hard because in the early 80s, autism wasn’t a big thing at the time – of course it actually was – but you were looked at being ‘the thick’ or the slow learner.”

Secondary school was “a bit easier” for Des due to the technical subjects he studied such as metalwork, woodwork and technical drawing, all of which he enjoyed.

Working life has been “quite easy” given Des’s ease with the structure of the working day, even if certain jobs along the way have taken too much of him both physically and emotionally.

“A delivery driver’s not much of a career but when you’re autistic it’s ideal. It’s structured, it’s timed and I get to spend about eight hours a day on my own in a van – so it’s perfect – I don’t need to talk to anyone! I just literally run in, run out and say ‘good luck’ – some people don’t even know I’ve delivered, it’s that quick.”

Admitting that a lack of emotional skills has “plagued me over the years,” Des, now divorced, having been in a relationship for 20 years, articulated what his understanding of being a good spouse and parent was.

“You went to work, you earned your money, you paid the bills and made sure everything was done and that was what you were supposed to do. I did lack in the emotional support end of things, maybe the intimacy end of things and that did cripple and would cripple any relationship at the end of the day. But it forced me into a situation where I had to go on a journey of self-discovery and that’s how I got to meet Kitty (Galvin) and Mandy (Fox, both with the NLN) and it’s been brilliant so far. It’s an ongoing process but they recognise where the trouble is, where the kinks are and end up ironing out a lot of things. And I have to say I’m a lot happier in my life and in myself – and that’s really it.”

https://waterford-news.ie/2022/04/15/the-self-discovery-of-living-with-autism/

Text of article: Call for increased services and supports by Dermot Keyes

The need to expand supports for both children and adults with autism was the most regular refrain shared by speakers who addressed the Waterford Disability Network (WDN) inaugural conference on autism.

The conference at St. Patrick’s Gateway, which was held on World Autism Awareness Day (April 2) heard from TDs Matt Shanahan (Ind) and Marc Ó Cathasaigh (GP), who were both in attendance.

“Any parent will tell you what they want for their children is for them to be included,” said Deputy Shanahan. “They want them to fulfill their potential and they want them to have safe and productive lives and they want them to get a (psychological) evaluation as early as possible.”

Referencing the strain on the school system in terms of the annual number of evaluations granted per school, Deputy Shanahan acknowledged: “That is not enough, unfortunately that is where we are at the moment but we are trying to change that.”

Deputy Ó Cathasaigh, who has been appointed to the special Oireachtas Joint Committee on Autism, said his interest in autism arose from his 15 years in teaching.

Having taught children who were diagnosed along with those that hadn’t been (“from your years of experience you begin to pick up the signs”), the Green Party TD spoke of “the cliff edges in terms of provision for people with autism. There’s a cliff edge at five or six when they transition from early school and childcare into primary school and another cliff edge faced at 18.”

The Oireachtas Committee, which met for the first time on Thursday last (April 6), is time-bound and has to produce a report within 12 months.

Kara Baumann of Dungarvan’s White Strand Foróige Club, the first such club for people with autism anywhere in Waterford (which opened in 2018), said the club was born out of a need for parents “who wanted something better for their child.”

Kara, whose daughter Ariel was finally diagnosed after a very trying number of years, said the club currently has 20 members and eight leaders. “Anyone can do it,” said Kara when it came to the potential for establishing other such Foróige clubs in Waterford.

“We’ve kids that come from Ardmore, Clashmore, Villierstown, Kilmacthomas and Bonmahon – basically a 20/30 minute radius from Dungarvan. We’re full to the brim and only took on three members this year because we lost one or two. We aim to provide activities and opportunities to develop mental, physical and social skills for the members via structured sports, games, arts and crafts, cooking, getting into the community and having fun.”

Ms Baumann noted: “Temple Grandin (a prominent speaker and author on autism) always says that 80 per cent of people with autism don’t work but we want to have it the other way, that the 80 per cent will work.” WDN’s Seán Rohan said that the network would happily accommodate a city or East Waterford-based Foróige Club free of charge at its New Street Offices.

New Ross-based Teresa Carr Buckley is co-founder of the Dreambig Project South East, a venture for people with autism, which is aiming to develop a footprint in Waterford, Wexford and Kilkenny.

The new organisation’s Board of Directors which is due to be formalized by June, includes Waterford TD and Sinn Féin Health spokesperson David Cullinane.

Ms Carr Buckley hopes to establish a regional-based youth club, a social enterprise in the form of a restaurant, art gallery and bakery, along with a respite/independent living centre and a pre-school.

She stated: “We’re hoping to build apartments in connection with Focus Ireland or Respond for supportive living for people who are neurodiverse – we’re not autism specific – and that’s what makes this idea unique.”

Further Dreambig developments are expected in the coming months.

The success of Cork’s Rainbow Club, founded by Karen O’Mahony and her husband John in 2015, offers a template, which Dreambig is aiming to emulate.

Addressing the conference, Mrs O’Mahony said the club (which she described as “a massive community within a community”) is now supporting 930 families per week, aided by 24 staff (four of whom are autistic adults) and 62 staff.

“We are not Government-funded,” she stated. “We have done everything through fundraising and donations and we have put together a magnificent organisation that’s now sustaining many of our supports and services.

 We cater for the whole family. Our vision is all about the holistic approach and the child’s journey, from when you start and right through – and we feel that every county in Ireland should have a Rainbow Club.”

Its support services include Adapted Sports, Messy Play, a Lego Club, a Drama Group, Arts & Crafts, A Gamer Café, a Sibling Workshop and a Cottage Community Café.

Thanking Deputies Shanahan and Ó Cathasaigh for attending the conference, Seán Rohan referenced the support offered by both Cllr John Hearne (SF) who sits on the WDN committee, along with City & County Mayor Joe Kelly (Ind).

https://waterford-news.ie/2022/04/15/calls-for-increased-autism-services-and-supports/