Moments of happiness

Lihi Lapid speaks out on autism’s tragedies and triumphs.

By JENNIFER TZIVIA MACLEOD
Lihi Lapid (photo credit: Courtesy)
Lihi Lapid
(photo credit: Courtesy)
Lihi Lapid describes her first suspicions that something was wrong with her daughter: “I pray,” she wrote, “‘Please give me a deaf child’; all other possibilities, I realize, are much worse.” Her daughter’s hearing was fine, which meant facing the reality she’d dreaded all along: her daughter was autistic.
Lapid, a journalist and writer, and wife of Finance Minister Yair Lapid, spoke out on the final day of the Canada- Israel Autism Spectrum Disorder (ASD) Symposium, on March 4, offering the gathered researchers and professionals a different kind of insight from the scientific data they’d shared over the previous two days at Hebrew University in Jerusalem.
Talking about her struggles over the years as a parent of a child with autism, “I told my best friend, I want to sit with you at the age of 70, on a bench on Rothschild Boulevard [in Tel Aviv], saying I did everything… we did everything.”
Certainly, the list of therapies and strategies the Lapids have tried in order to draw out their daughter from autism’s closed internal world is long and somewhat curious. From trampoline sessions to horseback riding, from mainstream to specialized schools, pressure cell treatment, and “I probably forgot a few things,” they’ve tried it all.
“Still, my little daughter, 17 years old now, doesn’t speak.”
Since the movie Rain Man, there’s been a common misconception that autism always comes with “savant” skills – some type of heightened ability, whether in math, spatial relations or, as in the case of renowned US animal husbandry researcher Dr. Temple Grandin, who is autistic and was the subject of a 2010 feature film, empathy with other species. Only about 10 percent of autistic people have a specific heightened skill.
There’s also no clear connection between an autism diagnosis and IQ. Individuals with autism may have very low or very high IQs, or fall somewhere in the middle. IQ testing of autistic individuals – children or adults – may be difficult because, like Lapid’s daughter, they may be unable to communicate, or may have difficulty completing relatively simple tasks.
LAPID’S FRUSTRATION and pain are clear, but there’s also dark humor in her words. “Now everybody asks me about the iPad, like I didn’t know there is an iPad.” Though the gadget has been used successfully help many autistic children communicate, it doesn’t work for everybody.
“And don’t send me the movie about Carly,” she said, referring to the Canadian teen with autism who became a worldwide celebrity after she discovered she could communicate, articulately and enthusiastically, using a computer to describe life within an autistic mind. Once voiceless and “unreachable,” today, Carly Fleischmann tweets regularly (@CarlysVoice), attends university, and has co-written a book with her father about their family’s experience, which has inspired many living with an autistic child.
But there’s autistic and then there’s autistic. “My daughter is not ‘on the spectrum,’” said Lapid wryly, using a common euphemism for individuals with ASD. “She’s really there.”
Lapid is unusual in that her autistic child is a daughter. Worldwide, autism is five times more common in boys than in girls. And although early diagnosis is key to achieving higher levels of communication, not every child with autism will be able to speak or communicate, even with the help of technology.
While the causes of autism are completely unknown, the odds are slightly higher for older parents and babies with low birth weights. It’s also more likely that younger siblings of children with autism will develop the disorder, and targeting early intervention at these “baby sibs” was a hot topic among the researchers and practitioners at the symposium in Jerusalem.
Autism is also often accompanied by other diagnoses like seizure disorders, gastrointestinal and sleep problems, each of which requires separate treatment, which can cumulatively exhaust any parent, even one as passionate and energetic as Lapid.
One day, she says, she realized that there would simply be no end to the treatments, and no end to the guilt of being a mother with an autistic child. “There was always someone saying there’s another thing which I didn’t do.”
Chasing the pot of gold at the end of the autism rainbow, the elusive moment when she might, someday, hear her daughter speak at last, she realized the price she’d paid was her own happiness. “Somewhere in the middle, I realized I was the one who got lost.”
“I just don’t know who I am without her; don’t know what kind of adult I am… she made me the person I am.” Which is not to say there isn’t gold after all. “One time, a little girl asked, how do I understand her if she doesn’t speak… When I really listen carefully I can hear her, even when she doesn’t talk.”
ALL THESE struggles found their way into Lapid’s semi-autobiographical Woman of Valor, which was recently released in English. So did her daughter. “She kind of sneaked into my book,” said Lapid.
To the researchers, psychologists and others at the symposium, Lapid said, “You’ll talk today about research and about breaking through, and it’s very, very important. Not a day goes past without me wishing they’ll find the reason, the solution, to help us all take care of autism.”
Yet despite medical interventions and therapies, “after all the victories and losses… the biggest victory is I have a very happy little girl: she smiles, laughs, hugs, loves parties.” Diagnosis is important, treatment is important, but “it’s also important what kind of family we give her; what kind of mother. Does her mother smile?”
The emotional life of children and adults with autism isn’t well-understood; for years, it was assumed they couldn’t feel or understand emotions.
In truth, many children and adults with ASD feel emotions very intensely. They may have trouble regulating and expressing their own emotions, and social difficulties may get in the way of their understanding and interpreting others’. Some social cues are genuinely bewildering: the tight smile that communicates annoyance, or the “how are you?” that doesn’t need a detailed response.
But they may be more tuned in than they can express – autistic children feel confused or hurt when they’re excluded from peers’ activities; like all kids, they just want to fit in. And at home, as Lapid has discovered, they need to feel secure and loved, by parents whose entire world is not consumed by the negatives of ASD.
“Mothers and fathers need to continue with their lives,” said Lapid, finding happiness even in a world where it’s impossible to try everything. “I won’t be able to save my child, even if I dedicate all my time, my energy, my life.”
The future may be unknown, unstoppable, uncontrollable, but the present need not be overwhelming. As she wrote in Woman of Valor, she began “to realize that this moment can be good, and this good moment and another good moment are happiness.”
“Happiness comes in moments that are too easy to miss… [over] too many years, I’ve missed too many moments of happiness. Now my main goal is to have a happy family.”
Autism statistics
The Centers for Disease Control estimate the autism rate in the U.S. at 1 in 88 children, higher than most countries worldwide. In Israel, the autism rate is 48 in 10,000, or just under 0.5%. This is higher than was suspected before a 2012 study, perhaps due to an earlier reliance on parental reporting. As in the US, fewer low-income children in Israel, along with those from Arab and haredi groups, are diagnosed with autism, leading researchers to suspect a complex interplay of sociological and cultural factors. Another recent study says that testing may be more rigorous in Israel, with two separate evaluations per child. Because the criteria are more strictly evaluated alongside the Diagnostic and Statistical Manual description of the disorder, diagnosis may be more accurate here.
By the Numbers: US and Israel
$137 billion: Total annual cost, in the US, to care for individuals with autism, including adults.
$169 million: Portion of US NIH budget used for autism research.
$1.4m.: The lifetime cost of caring for a person with autism, according to U.S. advocacy group Autism Speaks. (This jumps to $2.3m. for those with IQs of 70 or less.)
$500,000: Cost, in Israel, to educate a child with autism from ages two to 18, according to the Hebrew University’s Dr. Asher Ornoy.
$17,081: Annual cost, in the US, of caring for a child with autism (from a 2014 study in pediatrics).
The 9900 Israeli intelligence unit is staffed with autistic soldiers, who use “rain man” skills to scan detailed satellite maps for minute changes.