While much of the recent media coverage surrounding charities in Ireland focuses on controversies, it is important to remember that beyond any such controversies are the tireless efforts of volunteers on the ground. People who happily give their valuable time over to improve the lives of others. As such, this reporter aims to give a voice to those at the coalface.
Michael O’ Flanagan (24) from Ballyfermot decided to get involved with the Autism Charity AsIAm, when he found out that his young brother Gavin was diagnosed with the condition. I sat down with Michael this week to discuss how the charity helped his family, and in turn what inspired him to become a volunteer in the charity.
While most people have heard of Autism, few people understand it. Can you explain what Autism is? There is no one solid definition, but the one that is referenced most is that autism is a lifelong neurological condition that affects the brain in certain areas such as sensory, social and communicative skills. It is important to mention from the outset that no one person with the Autism is the same, peoples’ lives are impacted differently by the condition.
Many people struggle when they find out a family member has a condition such as Autism. How did you initially come to terms with it? Initially, when we found out about Gavin’s diagnoses, we were upset, angry, and frustrated all very natural feelings when one is diagnosed with something. We suddenly (and wrongly) began to put limitations on Gavin, we would focus more on what he couldn’t do as oppose to what he could do. We felt society wouldn’t allow him to flourish and be the child he should be. But like all of us on this God given earth we’re here for a reason, a purpose and a meaning and that is exactly how we went about Gavin’s diagnoses in the weeks and month ahead. We embraced him for who he was and not who he was not. With Gavin in our lives he has informed, educated and challenged us a family. He has got us to do things we might not have ever done, he has motivated us to help bring about the changes needed in society and help raise not just awareness for the condition but an understanding of it. He maybe non-verbal but his presence and his smile keeps us motivated and constantly challenging the system.
In your experience, have the State/HSE provided the practical support required to assist families in caring for a child on the Autism spectrum? Every family’s needs, supports and services are different. Regionally the supports are also different, which adds its own hardship. Do I think the HSE is doing enough to support parents with children who are the spectrum? My answer would be a candid, NO! The cuts over the last several years have impacted greatly on families with many children losing their SNA teacher, home care help, families waiting months for paper work to go through the system, these all create unnecessary difficulties for families. The problem with the system is, is that it focuses too much on the number and not the individual, and we’re all more than just a number on a file.
Unfortunately, Autism has yet to be cured, so what are the goals when it comes to managing the condition?
This is a misconception. Autism, and I can’t emphasis or stress this enough, is not something that can be cured, it’s not something you acquire through nurture or the environment you grow up. It’s congenital. But what can be done and achieved, is that society through the power of understanding can allow people with ASD to lead a good life providing they are given the essential supports and resources from the earliest age possible. Some people need extra assistance in life and we as a society should strive and make that a possibility.
What exactly is AsIAm, and how did you come to be involved with them?
AsIAm is your one-stop shop for finding out information about Autism. They have a very clear and accessible website which directs people to the available supports and provisions that are available out there form someone with a disability. They help make our society more understanding of the condition and this is achieved through various mediums. They sum up their mission with four very powerful words: educate, empower, advocacy and community. All of these words coupled together can be very powerful in achieving an inclusive society.
In 2015, I decided to run my first marathon and my first ever run for that matter. I decided to do so, because I see first-hand the challenges Gavin experiences each day. I wanted to put myself in his shoes even for a short period, in the end it was Gavin that got me over the line. In running, I decided to choose a charity that wasn’t that well known at the time, I researched the charity AsIAm, liked what they stood for and more importantly I believed in their message, that every individual regardless of ability has a contribution to make in our society. From there our involvement as a family with AsIAm took on a life of its own, and to quote W.B Yeats “A terrible beauty was born”, and we would change it for a minute.
I’m sure like most charities, the need for financing is ever present. Has public perception changed in the wake of the Rehab scandal? Has it been more of a struggle to fundraise for example?
Sadly, there has been many scandals in the charity sector, which does have an impact on fundraising activities and people’s perceptions. Thankfully, of all the fundraising activities that we have completed, I have had only one bad experience, this was just a passing comment by passer-by. So from my own experience I can’t say it has changed, but that is not to say it hasn’t. The great thing about fundraising is the human conversations you have with people about why you do this, why you campaign and the impact it is having. Being out there in the open and being visible creates a conversation with people, this conversation is very important. I always say never underestimate the power of a conversation.
Having looked at your Facebook page, I noticed you were involved in many fundraising events for AsIAm. Which one did you find to be most enjoyable?
All of them where enjoyable experiences. But the one I enjoyed most was our very first parish collection in the run up to the Marathon in St. Matthews’s church. Over the course of two days we had four gatherings of people in our parish church, a spokesperson from the charity AsIAm spoke at each meeting. While we raised a lot a money, but it was the conversation in the days and week after the event that made an impact. We had people coming up to us saying, “My daughter has just been diagnosed” or “my Grandson has autism”, they were so happy to hear of it being spoken openly within their community. We as a family have put together many events and long may that continue. We are organising a 5k Autism run during ‘autism awareness month’ in April 2018, so watch this space!
If you had one message to deliver to the public about Autism and the AsIAm charity, what would it be?
I think people should really try and understand the condition of Autism and make one little change in their everyday life to help make a change in the way society treats others who may be a little different, be it physical difference or neurological. There is a great quote which has had a profound impact on me and it goes “what we do for ourselves dies with us but what we do for the world and other remains and is immortal”. If we all take little steps we can change the perceptions, limitations and restrictions society can place on us.
If you’re looking for information on supports, AsIAm is your one-stop shop.
Autism effects 1% of the population in Ireland. While a challenging and complex condition to treat, many people living with the condition can lead normal lives. But charities like AsIAm need support from the public to continue to help Autistic people and their families. If you are interested in learning more about the condition please visit www.asiam.ie
