Wednesday 28 January 2015

Our three kids all have Asperger's – just like me and my husband

Giulia Rhodes meets the Cook O'Tooles – the Irish-American family who refuse to let their autism diagnosis hold them back

Maura (9), is an expert on ancient history. Her brother Sean, (6) six, specialises in the classification of animals. Gavin, the youngest, has an encyclopaedic knowledge of Spider-Man – a little less high-brow, but then he is only three.

All three like to hold forth on their chosen subjects regardless of whether anyone else is listening or, for that matter, speaking. Family mealtimes, admits their mother, Jennifer, can be quite a headache-inducing affair.

Fortunately, Jennifer and her husband John are not averse to delivering impassioned monologues themselves – about, respectively, the history of monarchy and astronomy – if the mood takes them.

There is, of course, no such thing as a "normal" family, and the Cook O'Tooles are more aware of that than most. They are a self-styled "Asper-family". Over the past three years all five of them have been diagnosed with Asperger's syndrome, a high-functioning form of autism.

"This is our normal. We've always been like this, even before we knew why," says Jennifer (36). "I don't speak for all Aspies, like I don't speak for all women, or all redheads. But I definitely can't tell you what it's like to not be any of those things."

The family came to Ireland for the first time last month to share their experiences with fellow 'Aspies' at a seminar in Co Cork.

Jennifer's father-in-law, Patrick O'Toole, was born in Arklow, Co Wicklow, and emigrated to the US in the 1930s, later serving as a colonel in the US Marine Corps with postings to Vietnam and Cuba.

Researching her Irish heritage – Jennifer's maternal great-great grandmother hailed originally from Co Mayo – is a familiar Asperger's trait, but also an integral part of weaving her own family's Irish identity.

"Our children go to sleep hearing Gaelic lullabies," she told the Irish Independent.

Since speaking recently in Cork, Jennifer's Facebook page has been inundated with comments from Irish parents and fellow Aspies who are touched by her positivity and common sense approach to the disorder. "Hearing you speak has given me hope of a real future for my Asperkids," wrote an Irish respondent recently.

Postings like that are a small triumph for Jennifer, who views her work in incremental steps. "In the most basic terms, I want to change the face of Asperger's. I want to help explain it through the lens of my own less-than-fabulous moments and my own triumphs, large and small," she said.

Maura's diagnosis, three years ago, was the first. She had been a difficult baby, crying constantly and vomiting frequently. Her parents soon suspected a physical cause for her distress and, after a long, stressful investigation, she was diagnosed with tethered cord syndrome (a neurological abnormality of the spinal cord) at the age of four, and underwent surgery.

Her parents were looking forward to life after years of doctors and hospitals and Maura was then old enough for school. She sat entrance tests for a private school that John and Jennifer felt would best suit her gradually recovering health. The results were surprising – there was a huge gulf between her scores in verbal and non-verbal reasoning. That led to the diagnosis of Asperger's.

John, meanwhile, was seeing a psychologist, at Jennifer's insistence. "The trauma of having a chronically sick child was huge and John had no close friends to talk to. I felt he needed someone other than me to help," she says.

The psychologist realised that John was also on the autistic spectrum. The diagnosis surprised the couple, though Jennifer now can't think why. "It was so obvious – I always had to tell him to look at me – I was so busy picking over the children that I wasn't thinking about us. Then I went along to a talk, so I could understand John better, and had this moment of realisation about myself."

As a child, Jennifer had been taken to numerous psychologists by her mother, who was baffled by her daughter's inability to socialise, only to be told each time that the child was simply too bright for her own good.

Irish Independent

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