Xander O’Connor is a “kind hearted, smart little man” according to his mum Kelly Orsini, but few others see it. “He finds it so hard to depict that to other people because he’s so boisterous and loud.”
Xander has attention deficit hyperactivity disorder, or ADHD, and although Ms Orsini knew something was different with Xander from when he was a baby, his diagnosis last year was still confronting.
Children with ADHD may be overactive, noisy and disruptive in class and struggle to focus on instructions and activities.
Xander knows something is different, and struggles to make friends, but he also faces judgements from adults who don’t know him.
“For the most part parents put him down as an uncontrollable little brat and don’t give him the time of day. He notices some of it and says ‘that adult was rude to me’ but I tell him ‘that’s okay, they don’t understand you,” Ms Orsini said.
The pair decided to tell their story after the release of Federation University research showing the impact of the stigma of ADHD on families.
Fed Uni researcher Tania McMullen interviewed parents and grandparents of children diagnosed with ADHD for her PhD on the social stigma surrounding the condition.
“The stigma that’s attached to parents is around the bad behaviour and negative behaviour displayed by their children. Other parents don’t understand it’s uncontrollable behaviour, not a discipline issue,” Ms McMullen said.
“Mothers and fathers feel self blame as if it’s their fault it happens, when it’s not their fault at all. The stigma is connected to feelings of failure as a parent and as a result of that blame they avoid social situations and often feel socially rejected by peers.”
Some parents actually said they tell people their child has autism because it’s more socially acceptable than ADHD. ADHD and autism are both neurodevelopmental disorders but one is seen as more acceptable than the other.Fed Uni PhD student Tania McMuller
Ms Orsini said some parents had become more tolerant since Xander’s diagnosis, but others still judged Xander for his “bad” behaviour.
“What breaks my heart is when he plays with children in the park, because he’s so in-your-face parents will grab their children and walk away.
“We have struggled to teach him personal space so he gets up close to others and will approach them in that boisterous mentality and doesn’t understand why they back up and walk away. He’ll say ‘I don’t think they like me very much, they don’t want to be my friends’.”
Ms Orsini has also struggled with a lack of support for parents of ADHD children in Ballarat. With no local support groups she has joined a online forums to connect with other parents.
“When I first found out he had ADHD I was shattered. It’s a chemical imbalance in the body and I couldn’t fix it. The first six months were really hard, I felt lost and didn’t know what to do for him and couldn’t stop thinking about his future.
“Now I’m focussed on Xander, what works for him and the biggest thing I tell him is not to worry about what others think, just be good, be a good character and do your best.”
Ms McMullen said further complicating the perceptions of ADHD was the question of whether to medicate children with the condition, and confusion around its listing on the NDIS.
“If you do (medicate) you’re a bad parent and shouldn’t be giving them a stimulant but then if you don’t medicate you’re not giving your child the opportunity to reach their full potential,” she said.
I've learned to cry less and use that emotion and energy to make Xander aware that he’s a good guy and there’s something chemically wrong with him.Kelly Orsini
“They say it is listed as a disability under the NDIS but it has to be a life-long condition and with ADHD you can’t prove it’s life long … and unless you also have depression or anxiety alongside it doesn’t qualify so people get the idea it’s not a real disability.”
Ms Orsini has grappled with the decision whether to medicate Xander.
“At first I was against medication and adamant that we would teach him life skills, coping skills to take him through life rather than medication.
“But talking in online groups, some people say it makes a world of difference and they have a completely different, happier, less frustrated, less angry child which sounds fantastic but others say it’s a nightmare and their child is like a zombie.
“At this point Xander is not on medication, but I’m not as against it. His social interaction at school is hard enough, and if he was on medication that didn’t work for him or he withdrew in to himself it would damage his social interaction at school.”
Ms McMullen said during her research she was also surprised to find how ADHD affects the grandparents of diagnosed children.
“Grandparents know there’s a stigma and they can see it happening to their children, but when they say their grandchild has ADHD they use it as an opportunity to explain it’s a medical disorder. They find it empowering and grandparents talk about it openly and not feel the stigma, even though they feel there is a stigma for their children and grandchildren.”
Ms McMullen said mothers carried more stigma than fathers, because they were most often seen as the main caregiver and more likely to be called by school in case of an incident.
“But having said that, fathers also chose not to go to some social situations out of fear they might be called out on it.
“Some parents actually said they tell people their child has autism because it’s more socially acceptable than ADHD. ADHD and autism are both neurodevelopmental disorders but one is seen as more acceptable than the other.”
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