Last week, family website MyKidsTime announced that Galway Autism Partnership as the joint winner, with Cork’s Down Syndrome Centre, of its annual Charity of the Year Award. The recognition is a huge morale boost for GAP and provided the perfect backdrop for my interview with it's co-ordinator, Aisling Colreavy.
A native of Manorhamilton, Leitrim, Colreavy – who is bright and articulate with a sure grasp of her brief - has been at the helm of GAP since April 2017. “I came to Galway in 2008 to study psychology and then I did a master's in applied behavioural analysis,” she tells me. “Some of what I studied in the master's was related to autism and disability. It’s something I know from my own family as both my sister and one of my nephews have autism though I’d never intended to pursue it as a career. But then through volunteering and work placements I found it was what I was really passionate about and enjoyed. Early last year I saw this position going in GAP and I realised it was my dream job so I went for it and was lucky enough to be taken on.”
Nearly a year after starting with GAP, Colreavy’s passion for her role still shines brightly; “I love it,” she declares. “I have the support of an incredible board. They are all volunteers; six of the seven board members are parents of autistic children of all different ages and the seventh works as a professional special needs assistant in a school for children with autism. One of the things I really enjoy is interacting with the volunteers who help us out, I always feel humbled that so many people are willing to give up their time to work with us. I also love visiting schools with our administrator, Nicole Walshe, delivering our presentation titled ‘Autism; what is Unique is Wonderful’. We speak to both primary and secondary kids and tell them that it’s OK to be different, what’s important is that we are kind to everyone and you can see that message sinking in.”
'Autism can be a wonderful thing, it adds to the diversity of the world'
Autism is still not fully understood, but Colreavy gives a summary of current thinking; “I always say the best person to talk to if you want to understand the condition is somebody who is on the autism spectrum. Medically, it is described as a spectrum disorder. Some people dislike that term because they don’t see it as a disorder. A more positive term would be the neuro-diverse population; in other words people with autism have a different way of observing things. Their brain works differently to most people but their perceptions are no less valid or important.
"Things like our sensory perception, how we understand and communicate with the world, our sight, sound, smell, touch and taste might all work completely differently for a person with autism. That can lead to both a very interesting experience but it can also be very distressing; sights and sounds can cause massive anxiety, different touches or feelings can cause distress. Yet it is also the reason why people with autism can have a unique vision of the world and be extremely creative or talented because they are able to hone in on something another person cannot see. I think autism can be a wonderful thing, it adds to the diversity of the world. At the same time people with autism might have intellectual disability, physical disability, sensory disability. There are different levels of challenge that people with autism face.”
Galway Autism Partnership was officially formed in 2011 by a group of parents and adults on the autism spectrum and became a registered charity. “It was set up by people who were frustrated and stressed out by the services, or lack of services, that were available from the HSE,” Colreavy explains. “The gap in services was having a big effect on the health and well-being of families. GAP was initially set up as a parent and family support group for parents to connect and share their experiences.
'Very often services just aren’t up to scratch, so you have to fight for everything and be that squeaky wheel to get the grease'
"There is currently no consistent approach to service provision for disability in Ireland so it varies from county to county and the level of communication between the Department of Health, the HSE, and Department of Education is limited as well. In 2014, autism services were eliminated altogether without warning. It used to be run through the child and adolescent mental health services but all of a sudden it was removed from their remit and wasn’t picked up by anyone else.
"The Galway/Roscommon Autism Service, which is based in Athenry, was then set up to respond to that need and there is an excellent team out there of psychologists and therapists but they are under-resourced and under-staffed because they have to cover two counties. At the moment every family that needs autism services is being referred to Athenry and they are flooded with requests. GAP is not a therapeutic support but we are here to help families get through that stressful experience of being on those waiting lists.”
I tell Aisling that my sister-in-law has two autistic children and has often faced draining battles with unhelpful service providers in order to get essential supports. “As a parent you often have to be an advocate for your children who might not yet have a voice for themselves,” she replies, recognizing the scenario. “You have to be an agitator; parents seldom want to be seen as troublesome but very often the HSE and services just aren’t up to scratch, so you have to fight for everything and be that squeaky wheel to get the grease. You’re lucky if you have the support of your family and the community around you in that fight because it is mentally and emotionally draining. So not only is your child affected, the entire family are affected if the carer is not being supported.”
Galway Autism Partnership covers both city and county and offers different types of support. “We engage with about 200 families in all,” Aisling reveals. “Our support would be in the form of answering phone calls and emails, responding to queries, meeting people one to one, providing peer support – for example pairing somebody seeking advice or in a difficult situation with someone who has gone through the same issue, coffee mornings, family fun days, autism-friendly events such as sensory cinema screenings. We also run social clubs and camps for children and adults with autism, based out of our premises in Laurel Park and in Tuam. These are two and a half hour long gatherings where kids and adults with autism can get together and feel comfortable about how they are with the support of trained volunteers in a relaxed setting. It’s also an opportunity for parents and carers to get a bit of a break, which many of them seldom get.”
Up to now, GAP has received no state funding for its work and its many vital activities have been kept going by the kindness of the public and businesses. In autumn 2012 a generous donation by Ramona Nicolas in RTE’s The Secret Millionaire, enabled GAP to secure its current home in Tigh Ronain, Laurel Park.
“We rely completely on donations and sponsorship,” Colreavy acknowledges. “We are in the process of applying for State funding but there are no guarantees we’ll get it. In the future, in order to be sustainable, it is something we need. If we had it we could offer more to more people across the county and city. That donation from Ramona Nicholas was able to fund reconstruction of this building and we now we have a purpose-renovated centre for social clubs and meetings, we have kitchens, playrooms, sensory rooms, and are currently installing a playground. It’s an ideal location for us generally and especially in which to run our camps for children of all ages; they love it.”
As our interview concludes Aisling reminds me, and Galwegians generally, to remember GAP in April; “April is Autism Awareness month and we’ll have lots of events around then. So if you see us out on the streets with a bucket please contribute!”