We spoke to Samantha Judge, CEO of Autism Ireland ahead of The RTÉ.ie/Lifestyle Hourglass Live Podcast Event taking place in The Little Museum of Dublin, this Thursday in aid of Autism Ireland.
Samantha began by explaining what ASD is.
ASD - Autism Spectrum Disorder is a neurological disorder of the brain. It's a spectrum and no two individuals on the autism spectrum are the same.
Some of the characteristics include a struggle with social interaction and social communication, a tendency for repetitive behaviours, issues with sensory processing, a struggle with fine motor skills and the development of gross motor skills.
ASD is so wide and varied, Samantha best describes it as a continuum.
Alli McDonnell, a model and mum-of-four, including Harry, (8) who has ASD talks about how she makes it work for her son and family at an RTÉ Hourglass event - more details and to book the charity €5 tickets for Autism Ireland here.
So what should parents look out for if they think their child might have ASD?
Samantha told us about her own sons diagnosis with ASD and some of the behaviours that sparked her concern.
She and her husband noticed subtle differences between their youngest son's development and their two older daughters when he was quite young.
Family and peers reassured them, citing the age gap between their children and the differences between boys and girls development as babies.
But she says that sometimes you have to "go with your gut feeling and your maternal instinct."
She found herself: "searching for the dreaded lists and ticking the boxes."
While a hearing test, confirming that Evan needed grommets eased her concerns momentarily, she knew that something more was wrong.
She lists: "missed development milestones, late to talk, struggling with communication, issues with fine and gross motor skills, difficulty holding onto things and walking on tippy-toes," as some of the early common telltale signs of children with ASD.
Samantha believes that, "early intervention is key."
"My son is nine, he was diagnosed privately at two. But all the work between [ages] two and four, before his HSE diagnosis is what helped him to be as he is today."
Coming to terms with your child's diagnosis can be a challenging time.
While Samantha is keen to point out that the experience is different for every parent, she speaks from her own personal experience.
She added: "I think a lot of parents would agree that once the diagnosis is given, there's a sense of grief."
"There's a sense of grief, because right at the moment, there's a loss of the future."
Just at that moment there's the thought that "we won't be doing the rugby run or the GAA run. What does the future hold. How will my child move through life."
"And you even jump to things like what about when I die."
"For me personally I went through a whole period of fear and what could be described as grief, because it is a loss.
"It's a loss of knowing, and not being as sure [about the future] as you were with your other children.
"And I moved through that. But it's still a struggle. I worry absolutely every day about my little guy.
But I also think he is beautiful, unique and he has filled our world with absolute happiness."
"But as parent of a child with autism, I can recognise that there is a constant worry and a constant fear and there is a struggle. There is such joy and happiness and wonderment but there is that underlying sense of 'what next.'
"There's a constant sense of, 'am I doing enough.'"
Speaking about the struggle to juggle as a parent, Samantha explains some of the additional challenges faced by parents of children with ASD.
Samantha and her husband work a split shift, so she can drop Evan to school every day and his Dad then collects him.
But she recognises that such a system is not feasible for all parents.
"You can't put your child into a child-minding system"
She acknowledges that many parents are forced to take a career break or to leave their job entirely to care for their child.
"There's a constant to-ing and fro-ing to SLT(Speech and Language Therapy), Occupational Therapy, Physiotherapy, depending on the needs of the child.
"Parents with a child on the spectrum will be trying whatever they can to help their child."
Samantha is not just the mother of a child on the spectrum but also the current CEO of Autism Ireland.
So what is Autism Ireland and what do they do?
"Autism Ireland was founded in 2001. It has undergone a lot of change in recent years and has a new board, and I'm the new CAO," Samantha explained.
"In 2017 we developed a five point plan which includes autism strategy to be implemented by Government."
That's an on-going process. Day-to-day, on the ground, Autism Ireland provides a wide range of services and training with a heavy focus on autism awareness.
Recent years has seen the introduction of 'World Autism Awareness Day' in Ireland and the development of 'Blue Nose Week' which aims to both increase autism awareness and raise funds for the organisation.
Autism Ireland is currently working with Croke Park and Irish Rail with an autism initiative to promote inclusion.
They are also providing autism training to many private organisations ranging from theme parks to cinemas and shops.
This year sees their outreach autism behavioural intervention training programme increase its capacity from 40 caregivers to over 160 caregivers.
How can you help
This Thursday evening RTÉ Lifestyle is hosting Hourglass Live Podcast Event, The Struggle to Juggle.
Model and mother-of-four Alli McDonnell will speak about her struggle and challenges of her son's diagnosis with ASD when her youngest child was just a few days old.
Broadcaster Jacqui Hurley and WellNow coaches will also be there on the night.
So if you fancy a night out (there'll be goody bags, giveaways and drinks too).
Join us in The Little Museum of Dublin, Thursday, July 26th.
