In the first of a four-part series - Susan Dennehy looks at families living with ASD
April may be autism Awareness month, but the harsh reality for families living with autism spectrum disorder (ASD) in Ireland in 2016 is something that is completely under the radar.
Coping with the challenges autism brings can be tough for families, but they say that it is made all the tougher by a lack of public awareness coupled with the lack of HSE Supports and Services.
One in a hundred people in Ireland have autism, but according to Kevin Whelan, CEO of Irish Autism Action, that figure means that an average of five in one hundred people are directly affected by the condition, if you take into account that having a person with autism impacts each member of a family.
In 'Voices From The Spectrum', a series of four reports about autism on The Pat Kenny Show this month, I spoke to Natasha, a young mother of three, who’s two son’s, Tito and Enrico, have autism.
Natasha describes how hard it can be when her son has a meltdown in public:
"It was on the side of the road and people were just stepping across him tutting and shaking their heads. I cried…He’s not an animal, he’s not bold. He has special needs."
"A different type of normal"
According to families living with Autism, a major shift in attitude is required. Kevin Whelan describes life for families living with ASD as "a different type of normal, a type of normal where the family need to lock their doors because of safety concerns. A type of normal where a trip to the local shop might have to be planned in detail. A type of normal where they just cannot leave the house on a particular day. What we, as a society, have to do is recognize that difference, because it is a difference, it is not less."
Once a parent receives a diagnosis of autism, all they want to do is help their child. This is where they quickly learn the shocking truth that the kind of services and therapies they need to help their child progress are often simply not available to them through the public health system.
Jude is 3-years-old, and his mum Theresa explains her frustration at the system:
"You’re in a world where nobody explains anything, you don’t know what anything means. You get told your child has a life-long disability, and you just get put on a waiting list."
Waiting lists for ASD services are unacceptably high in this country. According to official figures from the HSE released two years ago, there were 3,000 young people waiting 12 months or more for speech and language therapy alone.
This is particularly worrying when you think that all the evidence says that the earlier you intervene with a child on the spectrum, the better. If you provide a child between two and six years of age with, for example, speech therapy, you have a fantastic chance of giving that young person the skills that will allow them to participate in society.
Consistently, the parents in the series ‘Voices from The Spectrum’ tell us they want to give their children a chance to fulfill their potential. They are calling for equality and a society where they can be who they are openly, the question is, are we listening?
Listen to part one of 'Voices From The Spectrum' here: