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to keep everything together. Spike, who was now 14,
confronted me one night. “You don’t seem very upset,”
he said. I shouted, “I am upset! I’m trying to be
brave!” He gave me a huge hug and said he was sorry.
We were all in agony because we knew what was
going to happen and it just seemed so bloody unfair.
P.J. and I hoped we had the strength
to do it all a second time with Jack – all the therapy,
the research, the expense and the heartache.
I took Jack to see Ricki Robinson, the same
autistic specialist paediatrician who had treated Lily.
She confirmed Jack’s autism diagnosis and said
we should start therapy as soon as possible, for at
least 36 hours a week. “But first, he needs to have a
24-hour EEG done to measure the electrical activity
in his brain,” she said. This time, Robinson sent us
to see a Dr Chez in Chicago. Jack had his own
“mountain hat” for a day. When we returned to the
hospital the next morning to have his bandages and
electrodes removed, I watched the printer spew out
pages of squiggly lines – Jack’s brain activity.
Two days later, Chez called to tell us that Jack
had experienced more than 100 absence seizures in
his left temporal lobe in the 24-hour period. There
was an electrical storm going on inside Jack’s head
every night, wreaking havoc on the part of his brain
that dealt with memory and language. “Whatever
he is learning during the day gets
erased by the seizures while he
sleeps,” Chez explained. His
long-term memory process of
learning words was being constantly
interrupted, so the memories were
not being permanently stored.
While Jack’s diagnosis
was going on, Lily, now 11,
had developed some disturbing
behaviour. She would suddenly
throw up, or start screaming
“headache”, going from calm to
enraged in seconds. Sometimes
she’d become so angry she would
fling her arms and hit whoever
was in the way. Occasionally
she would weep for days.
I asked for a consultation with
Chez for Lily. He said he thought
Lily might have bipolar disorder on
top of her autism. It was possible
that hormones released during
puberty had triggered a mood
disorder. It was hard to tell, he
explained, because people with
autism can have unexplained mood
swings. Lily’s verbal communication
We wanted to be near our trusted autism experts,
the people who had helped Lily. “Tell me he doesn’t
have autism,” P.J. would say, practically begging me
to lie. “I can’t say that,” I would reply. “I don’t think I
can go through it again,” he would say. “Not Jackie.”
No. Not our dimpled, magic elf. Please not him.
The day before we left Sydney, I got an email
from a producer, Emma Cooper, who had slipped a
book into my letterbox, hoping I might have time to
read it and consider adapting it into a movie. I told
her I was about to leave the country, but that I would
take it with me and read it. I went down to my
letterbox and found The Dressmaker, by Rosalie
Ham. I packed the book in my suitcase.
Once we were back in Los Angeles, I
contacted Dr Anshu Batra, a young
developmental paediatrician, the
mother of a child with autism. Her
practice was devoted to children
on the autism spectrum. On June
6, 2005, within 15 minutes, Batra
gave Jack, our darling prince of
smiles, [a] diagnosis of autism.
I broke down in her office.
Batra looked at me sadly. “Surely
this cannot come as a surprise?” I
shook my head. It wasn’t a surprise.
But I had hoped she might tell
me our fears were baseless.
On the way home, I sat silently
in the back seat, holding Jack’s
hand. I was trying to figure out
how to tell P.J. [the diagnosis]. He
loved Jack so much and had been
so relieved by the reassurances of
the doctors in Sydney. The news
was going to hurt him terribly. I
decided to wait until I got home.
When I told P.J., we broke down.
Jack’s diagnosis was
devastating. Spike (Jocelyn and
P.J.’s eldest son) went into a kind of
shock. He was angry. I was trying
CLOCKWISE FROM TOP
LEFT Jocelyn, P.J., Spike
and Lily in 1996; Jocelyn
on the set of The Dressmaker
with Kate Winslet; Lily with
little sister Maddy in 2007.
“There was an
electrical storm
going on inside his
head every night”
Jocelyn with Jack,
aged two, in LA
on Christmas
Day, 2005.
marty
(Marty)
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