HAVING worked in the autism field for more than 20 years, including lecturing at UCD and the Cork College of Further Education and Training, Sharon McCarthy’s expertise is wide-ranging.
Not only has she studied and researched the area, but of her six children, five are neuro-divergent. And just over two-and-a-half years ago, Sharon was herself diagnosed with autism.
Now 45, Sharon, a former childcare professional, says it’s not unusual for a high number of families to have more than one neuro-divergent member.
“Current studies indicate that when one child or family member is identified as autistic or otherwise neuro-divergent, then chances are another child or parent may also be,” says Sharon, whose children range in age from seven to 25.
“To that end, I believe whole family screening should be made available when someone is diagnosed because in reality, when somebody has the opportunity to better understand themselves, suddenly their internal dialogue becomes so much kinder.
“They are positioned to see themselves as a ‘whole and capable autistic person’ rather than as an unsuccessful neuro-typical person.”
Sharon, who recently recorded a Tedx talk about being identified as autistic and having ADHD, used to have a very negative internal dialogue, constantly berating herself after a night out with friends for having said the ‘wrong thing’.
She started studying autism 15 years ago after the first child in the family got a diagnosis. Of the five of her six children, they identity as autistic, dyslexic or having dyspraxia, sensory processing disorder and anxiety.
“First and foremost, I enjoy being a mom. I went back to college to make sure that I’m empowered to set my children up for life because there’s a lack of interventions in this country,” said Sharon.
She did autism studies at UCC and also studied at Mary Immaculate College. While studying, Sharon realised she “ticked a lot of the boxes that need to be ticked in order to process an autism diagnosis.
“The main motivator for me going for a diagnosis was the fact that I was very self-critical and felt I should be able to do what others do. I wanted to create a kinder narrative around myself.”
Sharon also takes things literally – an indicator of autism.
“If you say something, I always take it at face value, regardless of whether the person intended to be sarcastic or unkind or whatever.
“From an ADHD standpoint, my brain would be exceptionally busy. Some people when they think of ADHD automatically picture a kid bouncing off a wall, with really high energy. While I have high enough physical energy, for me it’s the brain which never stops thinking. I’d wake in the middle of the night with a thought because of my very busy brain.”
Now that Sharon has a better understanding of herself, she no longer gets cross over small things.
“I no longer get frustrated with myself and I’m much kinder to myself. From a parental perspective, it has definitely allowed me to understand the perspective of my children better and I now connect more easily with them.
“From a friendship standpoint, while I have a wonderful circle of friends, I connect with other autistic people who have similar experiences as me. So the diagnosis has been hugely positive.”
Sharon got a lot of help at home when her children were very young from her mother and mother-in-law. Now she is self-employed, able to work her hours around her children’s school and study times. Her husband works from 9-5pm.
“As the children get older, they’ve learned to understand themselves better. They all do quite well from a self-regulation standpoint, supporting themselves.”
Sharon says that she never tried to dictate social rules so her children could fit in with everybody else.
“In our house, it has always been about empowering children to be their best selves. That definitely laid the foundation for a somewhat positive experience.”
Having had to go outside the country to get her own diagnosis, Sharon said that in order to survive in the world, she learned a lot about social rules, watching other people and taking note of phrases they might have said.
“Even though it seems a little uncomfortable, I automatically look people in the eye. I have no doubt that people question whether or not I’m actually autistic because I present as very typical. But in reality, there’s pressure on my brain and body to navigate spaces with almost a kind of mask. There’s a huge amount of research around ‘masking’. It’s when a person is autistic or neuro-divergent but they’ll present themselves in a way they believe others would most like them to behave. They won’t express how upset they are.”
The needs of autistic/neuro-divergent people are not being met in this country, says Sharon.
“About 40% of autistic individuals present with diagnosed anxiety at any given time in comparison to 15% of the general population. Also, autistic people are nine times more likely to experience suicidal thoughts than their non-autistic peers. That speaks of a high level of need that is being unmet. There’s a need for mental wellbeing services specifically for autistic people.”
Sharon, who provides training to businesses and works in the role of advocate for neuro-divergent people, would like to see “judgement free diagnosis where a person is met with understanding and their experiences are taken into consideration and validated. “This is essential in relation to adult assessment. In schools, peer education is crucial to ensure a judgment-free environment for any child attending.”