Understanding teens and tweens on the autism spectrum
She is mum to a tween — 10-year-old Maura, who has Asperger’s syndrome. As do her other two children, Sean, seven, and Gavin, four. She and husband John also have Asperger’s. All five were diagnosed about three years ago.
Based in North Carolina, she will give the talk in Cork on Oct 10. She says she purposely chooses “to see the positive side of life” and has spoken in Ireland before (about 48,000 people here are estimated to have a diagnosis of autism and Asperger syndrome).
O’Toole, 37, has some 250,000 followers on Facebook and says many are from Ireland. When she spoke here, people told her it was the first time they’d heard anything positive about Asperger’s. Parents of kids with the condition asked her, ‘What can I hope he’ll become?’. O’Toole replied: “My dad was an international commercial litigator — would that be OK?”
Her late father had Asperger’s, she says, but he never knew.
“Not too many people look back on their adolescence and say that was the shining glory of my life,” she says.
“You so quickly move back and forth between wanting to be independent and wanting to revert to being a child. There’s the vulnerability, the complications of dating, the sexuality and hormones — then add to that the awareness that you seem to be missing these social cues that everyone knows and expects you to know.
“You’re in a world that feels very chaotic. You feel everything you think and feel is obvious to everyone else so you don’t explain things as well as you need to. You’re misunderstood by most people most of the time.”
While the ‘neurotypical’ world — those who don’t have Asperger’s — understands that there are levels of intimacy, people with Asperger’s don’t. They don’t get that you don’t say the same thing to someone you’ve just had lunch with for the first time as you would to someone you’ve known 10 years.
“A teenage boy might feel he has established a relationship with a girl that’s more intimate than it actually is. Girls [with Asperger’s] tend to fall victim to class jokes and bullying. As adult women, we know the speech of girls is so layered and nuanced. People with Asperger’s truly don’t see the strategy involved — they think they’re making themselves likeable when in fact they’re doing the opposite.”
O’Toole says adult women diagnosed with Asperger’s are vulnerable to dating abuse. “There’s a social naïvety. Somebody asks ‘do you want to see my house?’. He’s not really asking the girl if she wants to see his house. But [we] say what we mean and mean what we say and we expect others to do the same. The long-term effects of ostracism and bullying can mean girls are too willing to accept what comes their way.”
O’Toole’s message to these “profoundly bright” children who have Asperger’s is simple: By understanding some unwritten social rules, they can gain a level of control over what other people think/feel about them and how they treat them. Pointing out that people with Asperger’s are sticklers for accuracy, she says: “Lots of kids run into trouble when correcting an authority figure or a peer.” She advises them to correct down gently (eg, children they’re babysitting); correct across with consideration (peers); and correct up only if there’s danger.
Suppose a young person with Asperger’s says something that isn’t meant to be funny and someone laughs. “I teach them to consider whether the person’s laughing at or with them. I say, ‘If it’s someone you like, who’s kind, probably they’re laughing with you; if it’s someone who likes it when you feel sad, then no — they’re likely to be laughing at you.”
She teaches them to make ‘I’ statements — ‘I feel sad when you laugh at what I’ve said’ — followed either by ‘please stop’ or ‘could you explain what you’re laughing about?’
O’Toole wants teens to know that everyone has strengths and weaknesses. But the reality is there are barriers that have to be surmounted, even at the basic level of diagnosis.
Cork-based senior clinical psychologist Patricia Vicario says some social difficulties of children with Asperger’s are harder to detect given the skills or strengths they have in other areas.
“Children might have excellent verbal skills, good cognitive ability, or be affectionate, which may mask some of the social difficulties. It’s also difficult to diagnose girls with Asperger syndrome — they use different coping and adjustment strategies to try to mask their social difficulties and they try to imitate others to fit in.”
The difficulty for parents, says Vicario, is the discrepancy in the ability set of children with Asperger’s. “It’s difficult to understand how they can be so able in some areas — be very intelligent, very funny, or able to express themselves very well, and struggle in others — show disproportionate emotional reactions, be rigid and set in their routines, or lack awareness in relation to social rules and know-how.”
She adds that “strong emotions can be very overwhelming for them”.
What’s needed in Ireland, says Irish Autism Action CEO Kevin Whelan, is earlier diagnosis and appropriate intervention, as well as support and resourcing of people on the autism spectrum at each developmental transition — for example, going from primary to post-primary school. Given current economic realities, Whelan would like to see existing money in the system being re-configured to address these requirements.
* Jennifer O’Toole will talk about social skills for teens and tweens on the autism spectrum on Thurs, Oct 10, in Maryborough Hotel, Cork, at 7.30pm. For more info, visit www.asperkids.com. For tickets (€20 per person or two for €35), call the Shine Centre for Autism on 021 4377052; alternatively visit www.shineireland.com.
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