The other side of autism

‘Post’ film critic Hannah Brown depicts highs and lows of developmental disorder from a mother’s perspective.

By AKIN AJAYI
HANNAH BROWN 521 (photo credit: Iris Nesher)
HANNAH BROWN 521
(photo credit: Iris Nesher)
Ever wondered what it’s like to be the parent of an autistic child? Ever thought about the brief transcendent moments that make all the effort and energy and heartache and sacrifice worthwhile? Hannah Brown shares one of those moments.
“I asked Danny if he had brushed his teeth, I hadn’t heard the teeth brushing so I knew he hadn’t done it, that’s not surprising, I mean that’s all parents…” Brown talks quickly, in long sentences that contort and divert but still somehow manage to arrive at the intended destination.
“So I said, ‘Danny, did you brush your teeth?’ And he said ‘yee-a-a-h,’ with, you know, such glee that he was deceiving me. It was the first time, it was such fun, and I hugged him and called Steven who runs the program to tell him that Danny had lied, he lied, he lied!”
Here’s one thing about autistic children: lying is very difficult for them. Lying requires – among other things – placing themselves in the position of the person one wishes to deceive. Psychologists refer to this as the theory of mind: the capacity to attribute thoughts, desires and intentions to others in order to predict or explain their actions. This is very difficult, if not impossible, for autistic children: Now one can grasp why Hannah Brown was so excited about the first time her son lied, at the age of 10.
BROWN, The Jerusalem Post’s long-time movie critic, has just published her first book, If I Could Tell You. It is a fictional story about the experience of autism, but not from the conventional perspective of trying to re-create the experience of an autistic child. Rather, it looks to the oft-invisible experiences of the parents and carers of children and young people with autism. Without distracting from the challenge of the disability, it’s not a stretch to describe parents as the overlooked support actors in the more potent drama of their children’s lives. They live the experience of their children but also encounter other personal challenges with family, friends, career, life itself. Fissures are inevitable, but empathy is hard to come by. Not because people don’t care but because people don’t know.
Brown brings these experience vividly to life through the intersecting narratives of four very different New York families, trying to manage life after the reboot button that is the diagnosis of autism in their respective three-year-old children. Rick and Brett are a high-achieving couple who adopt Pearl from China after struggling to conceive naturally for many years; Anne has a recalcitrant teenage daughter and an infant child in addition to Max, three years old and obsessed with green lights. A lost career in academia and a remote, workaholic husband hardly help.
Talia, a former model, has never really recovered from losing her boyfriend and her career in quick succession, the two replaced by Anthony and his disability. Once confident and capable, she has now become vulnerable and desperate. She looks for reassurance about her son’s condition from the fringes of the medical profession, placing her faith in untested and unreliable remedies. And there is Ruthie, a transplanted Israeli in New York. Her teenage son was all but disowned by her socially mobile Israeli husband and his family when his condition became clear; now Ryan, her younger child from her new marriage, appears to be autistic too. Whether her new, caring family will be able to hold together to weather the storm remains to be seen.
“All the characters have some of my experiences,” Brown says. We are in Cafe Laurent at the Feuerstein Institute – formally known as the International Center for the Enhancement of Learning Potential – in Jerusalem. Brown is on familiar terms with many of the people who pass through as we talk; several stop to say hello and to ask after Danny, her elder son. “It isn’t like there is one character who is definitely me, but these are my experiences and the experiences of my friends.”
If I Could Tell You is engagingly realistic, allowing for a genuine empathy with its characters and their travails. The four sets of characters meet in a monthly support group convened by Carol, a therapist who knows all too well the price that their children’s disabilities will extract from her clients. Envy, heartbreak, infidelity, frustration all fizzle and subside as together the parents slowly establish a camaraderie forged by their common experience of living with a disabled child.
Why fiction? While the book is clearly informed by – if not directly based on – personal experience, it does not read as essentially cathartic in nature. Brown – who also teaches a course on Israeli film at the Tel Aviv satellite campus of NYU – was movie critic at the New York Post when Danny was diagnosed as autistic in 1999. He was three years old and her younger son was just six weeks old.
“It was a part-time job and I was writing about movies, but… I still had a hard time doing that because I couldn’t concentrate, all I could do was think about my kids.” After moving to Israel with her Israeli partner, she picked up writing again, this time for the Post.
“Then I started to write short stories again, and I wrote about everything but autism.” She had the sense that she had taken this form as far as she could go with it and wanted to try something more substantial. But what about? “They say ‘write about what you know,’ and all I had been dealing with was autism.” But there were other prompts as well.
“[Caring for an autistic child] is very dramatic but there is also a lot of humor too, maybe bizarre or black humor. And also, my friends all had these amazing stories that were completely riveting.” And there was the fact that very little has been written about this aspect of life with autism. “In terms of just doing a novel, writing about all the day-to-day stuff, there wasn’t very much out there and in the end that’s why I decided to go ahead and do it.”
Amidst the significant upheavals that Brown’s characters experience, there remains one constant: their monthly support group. How useful is this resource? “It has been very important,” Brown answers without hesitation. “You know, that’s what started the book, because it was really about how people can help each other in this situation.”
What help do parents in this position need? If I Could Tell You spells it out in unambiguous, sometimes heartbreaking detail. There’s the fear for the child and the fear for oneself; the daunting responsibility of caring for a child with a condition that many medical professionals scarcely understand, not to mention a parent thrust into the deep end without warning. There’s the vulnerability, the susceptibility to the bewildering range of potential cures; the need to believe that one of the touted solutions might just be the thing to cure one’s child. Then there’s the marital stress. Brown – herself a single parent – notes that as many as 80 percent of marriages break up in the wake of a diagnosis of autism.
And on top of all this, there is the palpable loneliness: the sense that one stands alone in protecting one’s child. And that’s where the support network comes in. If I Could Tell You touches on dark territory from time to time, explored with a candor that may surprise parents who have not cared longterm for a severely disabled child.
“You need to have a few people around you who know what you are talking about and you can say anything to, you don’t need to edit yourself,” Brown says about the role of a support group. It is not just the struggles and challenges that she is referring to, though; it is as much the distinct perspective on life that one develops over time, part pragmatic, part phlegmatic. “That’s another reason why you need to have these friends from support group… if you are one of the eight in 10 mums who are going to get divorced pretty soon, you want to have your friends around you who can help you get through the divorce and can tell you how to get on J-Date and all that stuff.”
The diagnosis and treatment of autism is not – and may never be – an exact science. Perhaps this, more than any other single issue, is the greatest source of angst amongst the parents of autistic children. Brown puts it thus: “If you had appendicitis, what treatment would you seek? You get an appendectomy, because it works, because four days later you are fine. With autism, there are dozens of treatments. That already tells you that there isn’t one that works because if there was…” she lets the sentence drift. If there was, everyone would be fine.
Brown’s son Danny is almost 16 and has attended the Feuerstein Institute for several years. The center does not focus solely upon autism but rather on a broad spectrum of developmental issues. She considers Danny lucky to have secured a place there. “They don’t look at the diagnosis, they look at the kid,” she explains. Much of If I Could Tell You was written in Cafe Laurent. One senses that the institute has been good to both mother and son, a protective yet permeable bubble that has allowed both to deal with the challenges of autism, albeit in very different ways.
It’s almost noon and Danny’s morning therapy sessions will soon be over. We’ve been talking for an hour, and one is naturally curious about the young man that inspired the book. “Why don’t you come on up and say hello to him?” Brown suggests. “He’ll be pleased to see you.” There’s something warm in this, in the spontaneity of her invitation. Being the parent of an autistic child must have changed her life in countless ways. But it won’t stop her from essentially being a nice person.
An excerpt and more information about the book can be found at www.hannahbrownbooks.com