Every year, April is National Autism Awareness month. In this month, people are encouraged to talk about and discuss the reality of autism, donate to autism support charities and help create a better understanding of the disability.
Autism is a lifelong disability that affects the development of the brain in areas of social interaction and communication. People with autism have difficulties in communicating, forming relationships, developing language and using abstract concepts. Scientists are not certain what causes autism but it’s likely it is genetically pre-determined.
Speaking to two mothers with autistic children, Lisa-Denise Connolly (23) and Katherine O’Malley (37), they give their views on what it’s like to have a child with autism. Both women have children aged 4.
Lisa-Denise’s child (Oisín) was diagnosed at the age of 3.
Katherine’s child (Aisling) was diagnosed the day before her second birthday. They were living in America at the time.
Autism is described as a “spectrum disorder”. This means that the symptoms and characteristics of autism can present themselves in a wide variety of combinations and can range from mild to severe. Aisling is now verbal, but Lisa-Denise says in regards to Oisín, “I know what some noises mean when he’s happy or sad. He will often hold your hand and bring you to the fridge for food, etc.”
When asked what the worst of their child’s autism is like, Lisa-Denise replied with, “If he’s upset he might bite, scratch or throw himself on the ground. If I don’t follow his routine it sends him into overdrive.” Aisling is very similar, “when Aisling doesn’t want to do something, there is no pacifying her- she could scream, hit and may have to be physically restrained. She may also stop speaking no matter how much you talk to her.”
In regards to the facilities, both mothers have taken quite different routes.
Aisling was enrolled in Early Intervention when they returned to Ireland. She attended a special school for over a year but is now in mainstream nursery and will be attending mainstream primary school. She will not be receiving special help as the Early Intervention team don’t think she needs it. When Aisling was first diagnosed, she had access to a variety of different therapies. This, and attending a special school when returning to Ireland, “has made the world of difference,” according to Katherine. She is now toilet trained, makes eye contact, and manages her autism in a very different way to how she used to.
Pre-diagnosis, Oisín was in a mainstream crèche and according to Lisa-Denise, he hated it there. “I would constantly get calls saying he bit a staff member or child, that he wouldn’t wear his shoes or a coat etc. He wouldn’t engage in their routine. He would cry every morning and it broke my heart.”
After diagnosis he started a special pre-school. They are helping her toilet train him and include her in every little improvement he makes there. The staff are educated and experienced in dealing with autistic children. Individuality is celebrated and Oisín doesn’t have to commit to a routine that doesn’t suit him.
“He loves it there and when you find a place they love it make your day a little less stressful.”
Next year he will stay in the pre-school and it is most likely Lisa-Denise will send him to a special school because in her opinion she thinks that is the most suitable option for her son.
Both futures for the children are unclear, but whatever happens they will receive the support and love that they need, just like any other child.
“I don’t think her autism affected her too much because she is still young. It was difficult explaining to her why she had to go to a different nursery to her twin and that she had to do different things than him. As for the future, I just don’t know.” Katherine says.
Lisa-Denise says, “He is very attached to me. He might never speak or have a way of communicating. He can’t form new relationships. He is such a bright happy little boy so whatever the future has I’m sure he will be very happy and I will be right there with him.”
When asked how they are coping, Katherine said “I did lots of crying, reading and trying different things, but I am coping.”
Lisa-Denise replied with, “Oisín is such a happy child and shows affection, I am blessed to have that. I know he loves me and that in itself helps me cope, knowing I’m actually doing something right. Some days are great and autism never comes into play, others are hard and you are just trying to get through them. He can’t communicate what he’s thinking, or he can cry for hours and keep bringing you to the same place but you have no idea what he wants and you can’t soothe him. I think every mother that has a child with autism blames herself, and you never feel like you are doing enough. I worry about the future so much wondering how independent he will be? What will he be like? Will he ever speak? I’m all he’s ever know as his father isn’t there so I worry about everything.”
“If I could take his autism away, I would. Not because I don’t love him, but because I love him,” she concludes.