‘There is no such thing as a little bit autistic – you either have a form of autism or you do not’

With two autistic children, Aislíng Owens Nash is well aware of what having autism means and says her sons, James (15) and Ethan (8), showed very different signs.

“James was initially diagnosed as having ADHD (Attention Deficit Hyperactivity Disorder) with DAMP (Deficiencies in Attention, Motor Control and Perception) in 2014,” she says. “He also has dyslexia, dyspraxia, dysgraphia, SPD (sensory processing disorder) and a few other issues.

“Ethan was diagnosed with ASD (Autistic Spectrum Disorder) with a PDA (Pathological Demand Avoidance) profile in 2018. His Montessori alerted me to some challenges a couple of years previously but, as James had experienced challenges mainly with gross motor, fine motor and executive functioning – which impacted his independence – I had not initially realised there were challenges with Ethan.

“He was extremely capable physically and I was also still in the early stages of diagnosis with James so wasn’t fully aware of what I was dealing with. At the end of the day, your normal is your normal and you know no different.”

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The Kildare woman, who also has a six-year-old daughter, Alyssa, says it was very difficult to get a diagnosis for her eldest child as the “systems do not link up correctly” and “work independently” of each other.

Despite showing different traits, however, the signs were there for both of her sons. “With James, it was mostly the incessant noise and movement and inability to complete tasks in school. Although, as my first child, I excused a lot of his falls as being due to him being a boy and boisterous. He was always more confident around adults but struggled to make friends.

“With Ethan, it was the flip flopping between personality traits and extreme behaviours and reactions to situations. He has always made a lot of noise and rarely stays still.

“[Over the years], we have learned a lot of strategies around using language – [which] would differ from the stereotypical advice or strategy guidance of one-word directions or short instructions. So, with Ethan we do a lot more discussion. While with James, it often starts with the sentence and will reduce into single words until it sinks in. They are both very clever but they receive information differently.

With Ethan, Owens Nash didn’t initially know it was ASD. She says she just knew “something was going on” and, with the encouragement of their Montessori principal and two good friends, she sought help.

[ ‘Left out of birthday parties and sports’: Autism a barrier to making friends in school, study finds ]

“He eventually saw a Primary Care psychologist who put together a team to do the assessment, as he said we could not continue to live ‘in crisis’ any longer. I hadn’t even realised how intense the situation was and was just taking action, making changes and looking for ways to support each of us in the family and to keep us all safe. But, it massively affected my own mental health as I was living in PTSD mode and had been diagnosed with PND (Postnatal depression).”

As well as displaying very different signs of autism, the two boys – like any of us – have their own individual personalities, likes and dislikes. This, the mother-of-three said, is important to recognise.

“Ethan is fiercely independent and was not interested in being affectionate unless it was on his terms,” she says. “Sometimes, he would be silent and ‘cross’ for a long time until bedtime and then he would singsong conversations with me. He is a master charmer, very forthright in his communications, introducing himself confidently to strangers, telling them about everyone in his family and asking questions about them. However, he was and is, sometimes, still very much a Jekyll and Hyde character.

“We used to have to ask for permission to engage in tactile contact, whereas he, now, loves to instigate affection with family and friends. We have worked very hard over the years to get to this point but it can pack a punch with enthusiasm.

“James also loves Lego, music and singing. I started him horse riding to help with core strength, fine and gross motor skills and listening skills along with piano lessons and typing classes for fine motor control. He has also started using my old archery kit, which is great for fine motor strength, breathing and focus. He is a fantastic young man, has worked hard to find strategies to succeed and improve in many areas of his life with my support.”

While learning how to get the best interventions for her sons and caring for her family as a whole, Owens Nash set up her own group to help others in a similar situation – The Love Life Community.

“I have attended as many courses as I possibly could over the years of fighting for support and advice for strategies and, ultimately, it led to me doing my own research and learning and starting our family on a lower-tox living journey, which has benefited us all greatly,” she says.

“That is how my free Facebook community began. There I have teamed up with many guest experts for all areas of our lives in which we can take back control and make small and positive switches or ditches in our lives so we can all flourish and build a life we love and thrive in.”

Owens Nash, who is also a leader of networking community MIB International which offers child-friendly networking events to women in business, says she hopes April’s Autism Awareness Month will help people become more educated about the many different facets of autism.

“In my opinion, the stereotypes of autism are that you ‘only really have ASD’ if you are flapping, non-verbal, unsociable and can’t make eye contact,” she says. “Also, there is no such thing as ‘a little bit autistic’. You either have a form of autism or you do not.

“Another stereotype which frustrates me at times is that someone with ASD cannot learn new skills or be successful in life. Yes, there are certain areas of life which some autistic people may struggle with, and that’s perfectly acceptable as we’re all unique, but, just like neurotypical people, there are no two people in this world with ASD who will present the same either.

“So, I feel that Autism Awareness Month is important as it is an opportunity to show how varied the spectrum is, to educate the public on being more aware. I also believe all schools should have all-year-round education built in around diversity and inclusion – not just for autism but for all the differences we face in life – rather than needing to single out weeks for specific differences on certain weeks of the year. However, nationally, I think having awareness months brings more visibility to work which is ongoing throughout the year.”

Of course, finding out that your child has any condition which deviates from “the norm” can be unsettling and the Kildare woman says that parents of newly diagnosed autistic children should give themselves time to get used to the situation.

“Stop, breathe and take time to digest the information because, at the end of the day, the diagnosis does not change who you or your child are at the core,” she says. “What it does is better help you to navigate the systems we have in this country – though currently still flawed – to try to seek the best advice and support for you and your family.

“It’s also important to seek support from other parents who have been in your shoes. You don’t have to do what they say but you might be inspired to try new things. Try to seek out a community. I joined the North Kildare Carers Support Group and have learned so much.”

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Owens Nash recommends making a plan which works for the whole family. For her, it became about taking back control and making small but simple switches over time.

“We changed what we ate, removed chemicals from our home, changed what we listened to and read, changed how we laid out our home and actually, ultimately, moved homes. We also changed how we communicate with each child, worked on language skills and started asking more questions. We looked at sensory diets as well as literal food diets and changed schools so our children could have a holistic, supported approach to find ways in which they could feel empowered and supported.

“I learned a lot from individual professionals over the years and spent a lot of time researching, reading papers and looking at ways in which I could support our family without medication or extreme interventions. There are many amazing staff working in our broken systems who desperately want to help but, in many instances, their hands are tied and they, themselves, are hitting burnout.

“But overall, despite the lack of services, our children are now doing really well and we’re so proud of them.”