I began to search my memory for what I might have done to cause Lily’s autism. Was it the dental work I had done during the editing period of How to Make an American Quilt? I had finally saved enough money to get my scarred teeth fixed: I got a brand-new American smile and some amalgam fillings. I didn’t know at the time that I was six weeks pregnant. Could a tiny bit of mercury from the amalgam have got into my bloodstream and crossed the placenta? Was my vanity the cause of Lily’s autism? PJ blamed himself because of what he called his ‘bad genes’. He thought that having two siblings with mental health issues might have caused Lily’s autism. But depression ran through my family.
Other thoughts came to me: I remembered the cornfield where we filmed some of A Thousand Acres. One day Lily ran in among the stalks. The farmer who owned the field shouted at me when he saw where she was. ‘Get her out of there! We just sprayed pesticide in that field.’ I tried to find if there was a connection between insecticides and autism, but the scientific literature was too impenetrable. Or should we blame the terrible flu Lily came down with when we first brought her to Australia? But no matter how much research I did, it would not change the fact that Lily was autistic.
But was Lily truly autistic? The experts kept telling PJ and me there was some doubt about that. The autism spectrum is wide, ranging from people with profoundly disabling communication and behavioural problems to high-functioning individuals who write books or come up with extraordinary inventions. A small percentage of autistic people are savants in a particular area like music, mathematics or art.
When people ask me what autism is, I can only answer from my personal experience, and from what I have read: autism is not a disease but an umbrella term given to a set of behaviours. In order to get an official diagnosis, the person must display the ‘Triad of Impairments’—in communication, social skills and an obsessive insistence on things not changing. No one knows yet what causes the brain changes that result in autism. One theory suggests that in utero the brain does not follow the ‘neurotypical’ pathway, but blazes its own unique track. Autism doesn’t just affect communication. It affects all parts of the brain. It is often referred to as a ‘pervasive’ disability.
How do we experience reality? If you have a ‘neurotypical’ brain, all the sensory data will form your reality in a way that is compatible with the next person’s. In contrast, an autistic brain will sort the sensory data in its own unorthodox way. There is no way to predict how that autistic brain’s perception of ‘reality’ will evolve.
As far as I could tell, Lily’s senses told her that the world was too loud, too smelly, too bright and too distracting. Her day-to-day existence was a sensory onslaught and, most of the time, downright painful. She learned that being touched could hurt and sounds could be terrifying. Visual stimulation was often overwhelming, and textures and tastes could be disgusting. The unpredictability of life caused extreme panic in Lily. Communication of any kind was very hard, especially spoken communication. If Lily could not use words to organise her thoughts, how did she think?
In my quest for information, I discovered a book, Let Me Hear Your Voice, by Catherine Maurice, whose description of her young daughter’s descent into autism sounded so familiar, she could have been writing about Lily. She and her husband helped their children shake off their autism diagnosis by using a therapy called Early and Intense Behavioural Intervention (EIBI), also called Applied Behavioural Analysis (ABA), developed at UCLA by Ole Ivar Lovaas, a Norwegian-American psychologist.
An ABA therapist breaks down the stages of childhood development into small steps and teaches them to autistic children, using rewards and reinforcement. Parents are also trained in the therapy. Detailed data is kept on everything the child is taught. In 1997, results showed that a large percentage of children in this program made huge improvements, and many of them were eventually able to lead normal lives. The ABA therapy described in Let Me Hear Your Voice sounded educational, fun and extremely effective.
I read the book from nine in the evening until dawn. If trumpets had sounded and the heavens opened the moment I finished it, I would not have been surprised. I experienced a blinding epiphany: this was the therapy that Lily needed.
18
People on the autism spectrum don’t think the same way you do. In my life, people who made a difference were those who didn’t see labels, who believed in building on what was there. These were people who didn’t try to drag me into their world, but came into mine instead.
TEMPLE GRANDIN
On Thursday, 3 September 1998, I wrote in my diary:
My birthday tomorrow. Thirty-eight. Must try to keep up this diary to help keep my head straight. So…at least 50% of Lily’s therapists are dead against Lily doing Lovaas therapy. The floortime proponents say ABA turns kids into robots, and that the therapists put mustard on the kids’ tongues or even small electric shocks to get them to do stuff. I said Let Me Hear Your Voice never mentioned any of that. Besides, I will be in the sessions, so if anyone comes near Lily with mustard or a cattle prod I would kick them out of my house. Mary Beth says that Lily doesn’t need an intense program of any kind. She says keep up the floortime we have been doing. She said Lily just needs to be given a kickstart to continue her development, that she’s about the level of an 18-month-old, but she should keep developing until she catches up to other kids in a few years.
What if she’s wrong?
Lily was now nearly three. She was seeing Shelley Gallenson once a week. She was also seeing Carol Karp, a speech therapist, weekly, and doing as much floortime with me as I could manage. We then added an occupational therapist to Lily’s schedule. Lily had poor muscle tone, sensory-integration problems and motor-planning deficits. Her hand-eye coordination was severely affected. Her therapist worked with her on sliding, picking things up and learning how to stand on one leg.
When Lily wasn’t doing formal therapy, Rhonda and I would take turns going for walks with her. I bought her a trampoline. She loved it and spent hours outside, jumping and jumping. Rhonda would blow bubbles for her, so Lily could swat at them while she bounced. She was still far behind kids her own age. She wasn’t toilet-trained, she had no pretend play and she never imitated me. She couldn’t feed herself with a fork and spoon and needed a cup with two handles to drink. She could not suck through a straw. Skipping remained an impossible feat for Lily, no matter how hard we tried to teach her.
Weight fell off me. Never in my life had I managed to get so thin. When I bought some new clothes, I discovered I had lost four dress sizes, all from stress, the adrenaline of constant fear. I began waking up every night at 3 a.m., when I would get out of bed and look at the night sky, the constant moon, and Venus like a diamond, twinkling just below. It was hard to get back to sleep. Often, just as I began drifting off, Lily would wake up screaming. I would rush in to her room and sit with her in the rocking chair. She didn’t like to be held against my chest. Instead, I held her with her back to me, my arms around her tummy. I would softly sing her our songs, and rock back and forth until she stopped crying and fell back asleep.
Sleep deprivation induced visions. One night I woke and saw a luminous butterfly hovering over my bed, its neon wings floating slowly, almost filling the entire room. I wasn’t scared. Instead, I experienced a feeling of relief and familiarity. ‘There you are,’ I said. Speaking woke me up properly and my butterfly apparition dissolved.
About four months after beginning the floortime schedule, we began to see small signs of progress. One night I woke up to a different sound altogether. Lily was singing. I crept to her room and listened through the door. She was singing ‘Twinkle, Twinkle, Little Star’. Then she started singing ‘Baa Baa, Black Sheep’. She was word perfect, and the melody was clear and sweet. She may not be able to talk yet, I thought, but my baby can sing.
Carol Karp had told me that music is processed in a different part of the brain from speech. Singing can be an alternative way to learn language. Lily’s words seemed
to appear out of nowhere. Rhonda and I took turns sitting with Lily in her speech therapy sessions. We noticed that she could memorise rhyming books: Carol read Eric Carle’s Brown Bear, Brown Bear, What Do You See? to Lily over and over again. Eventually, Lily could name which animal was on the next page, before Carol turned the page.
This gave Rhonda an idea. She made a book for Lily: Lily, Lily, What Do You See? There was a picture of someone Lily loved on each page. Rhonda sat Lily on her lap and asked me to watch.
‘Lily, Lily, what do you see?’ asked Rhonda. There was a picture of Lily on the front page. Lily was smiling, waiting for Rhonda to turn the page.
‘I see…’ Rhonda said, and waited. She turned the page, revealing a photo of me. ‘I see…’ Rhonda prompted.
‘Mummy,’ said Lily. She lifted her eyes from the photo to me. ‘I see Mummy, looking at me.’
It was the first time I had heard Lily say my name.
A few weeks later, on 29 September, I wrote:
I got some of her favourite iced cookies at the store. When she saw them her face lit up and she said, ‘Happy!’ The other day I said, ‘Do you want a drink?’ and she said, ‘Drink…a juice!’ What else…oh yes. Someone sent us a gingerbread house. Lily started pulling bits of icing and candy off it. I saw her take a chunk of gingerbread cookie, do a happy little dance and say, ‘I eat this.’ Then, over the weekend she was hungry and I gave her half a banana. I put the other half on a plate on the table. Later, Lily was looking for the other half. I didn’t realise until I heard her say, ‘I found it.’ I am so excited. This is an explosion of words!
At the same time, Lily was becoming more affectionate. One night, as I was holding her in the rocking chair, she turned around on my lap and gave me a hug. A real hug, from Lily to me. She leaned towards my face and rubbed one cheek against mine. Then she started examining me, my mouth, my belly button, my bra (and breasts!), like I was her big Mummy toy. She picked up the little heart locket I always wore around my neck.
‘There’s a picture inside,’ I told her, and opened the locket to show her. On one side was a tiny picture of Spike. On the other side, a tiny picture of her. Lily looked at the picture of her big brother and said, ‘Bikey.’ I was filled with joy.
But Lily’s progress was always two steps forward, one step back. While her speech improved, word by precious word, her sleep got worse.
From my diary, 4 October 1998:
Lily was awake a lot last night. But she wasn’t crying, mostly vocalising and making sounds, practising words. She started calling me plaintively around 11 p.m. I couldn’t ignore her, so even though she wasn’t crying (then) I cooed over her and eventually picked her up for a cuddle. Big mistake. It was 1.30 a.m when she fell asleep exhausted from her screaming and crying. It was the same tonight.
Shelley says I should I stay in the room and read (or write!). I tried reading in a chair in her room tonight. All that resulted in was a very excited Lily trying to climb out of the cot to join me! Not what I had in mind. So I rocked her to sleep, only to have her perk up and think it was time to play. Then back in the cot for more screaming (or attempted escape). I was sobbing by midnight. She finally fell asleep at 1.30, but if this keeps up I’ll lose my mind. No rest, no time for Spike or PJ or my own winding down. And it can’t be good for her, keeping herself awake and stimulated until late at night.
I began to wonder if Lily had excess energy. Perhaps I could exhaust her during the day. I had heard that children with autism love water. Some find it comforting. I asked Spike’s swimming teacher, Sharon, if she thought she could teach Lily to swim. As it turned out, Lily was a natural in the water. Using gestures and simple words, Sharon taught Lily to float and swim and get herself to the side of the pool in case she ever fell in. She even had us throw Lily into the pool with her clothes on, to practise accidently falling in. Lily thought it was hilarious, but it also confused her. In later years, if she decided she wanted to go swimming in someone’s pool (or the seal pond at the zoo), she would hurl herself in fully clothed.
We were now spending thousands of dollars a month on therapy. Other parents in the autism trenches told me I could get government funding. After all, Lily was an American citizen! Government funding would mean a slew of assessments, but I was hoping that somehow this would lead to her being admitted to the Lovaas program. I took her to a fraught evaluation at a local elementary school, but learned that the local school district wouldn’t fund Lovaas therapy. As we trudged back to the car, we saw a group of five-year-olds playing. Lily stopped and watched the children through a cyclone fence, her fingers curled over the wire like some waif out of a Truffaut movie.
A little girl approached the fence. ‘I want to touch the baby,’ she said, looking at Lily.
‘We can’t reach you,’ I said. It was a bittersweet metaphor. I had to stop myself from sobbing on the way back to the car.
Shelley invited me to join her support group, a weeknight meeting at her house where the mothers of autistic kids could share their fears and frustrations. I went along, hoping for relief. An hour later, I left the meeting in tears. Everyone had such nightmarish stories. I told Shelley I didn’t want to go again. I would prefer to remain ignorant of how bad autism can get, and cling to whatever glimmers of hope I had left. Shelley begged me to start seeing a counsellor.
‘It’s not me who needs help,’ I said, defiantly. ‘It’s my little girl.’ I did, in fact, need counselling, but I couldn’t admit it yet.
Shelley put me in touch with a woman, Debbie Isaacson, whose autistic son was in the Lovaas program. Debbie told me how the program worked: once I had found my own team of therapists, the Lovaas people would train them. She told me I should apply and should call the Lovaas people every day. ‘Stay on top of them!’ she said. ‘Be annoying so they don’t forget you.’
So I did. I called them every day. We were on waiting list to be assessed, but even if Lily was accepted, they couldn’t do a three-day training workshop until May the following year. May? Lily would be three and a half by then. I knew from my reading that the Lovaas program worked best if it was begun by the age of two. I was frightened it was already too late for Lily. And if we started the Lovaas home program, we would be paying the therapists to come and work with Lily for six hours a day, six days per week. We had no idea how we were going to pay for everything. PJ had to get a movie going, and soon, if we were to have enough money for all the help Lily needed.
Lily’s symptoms were becoming exacerbated: she started flapping her hands more and having more tantrums. Sometimes when she started screaming in rage, nothing could calm her down. If I didn’t hold her, she hurled herself onto the floor and bashed her head hard on the boards. I was terrified she might fracture her skull.
Our friends Janet and Jerry Zucker lived in Brentwood, up in the hills. The house overlooked a beautiful garden and pool. Lily had an open invitation to go swimming and we often took her over. Janet’s labrador, Louie, would jump in the pool too and swim around with Lily and make her giggle.
One night, over a Japanese meal, Janet asked me when Lily was going to start her Lovaas therapy. I told her about the long wait.
‘Dr Lovaas is at UCLA, right?’ Janet said.
‘Yes’, I said, ‘He teaches psychology there.’ Dr Lovaas had become a semi-deity in my mind. I had tracked down a documentary of him working with autistic children and studied every frame. I had read articles about him and watched interviews with him on the internet.
Janet sipped her miso soup and pointed her chopsticks at me. ‘Mike Ovitz has donated a lot of money to UCLA. Why don’t I call Mike and have him talk to Dr Lovaas about getting Lily into the program sooner?’
‘What?’ I asked, dumbfounded. ‘You know Mike Ovitz?’
‘Sure.’ Janet shrugged. She knew everyone in Hollywood, including Mike Ovitz, a famous agent who had also run Disney for a while.
‘It’s...too much, Janet,’ I said, feeling a complicated mix of hope and embarrassment.
‘Would you do anything to help Lily?’
‘Of course,’ I said.
The next day, Cori, our assistant, was driving Lily and me to an appointment in Venice (I still didn’t have my driving licence). I was sitting in the back seat, keeping Lily distracted in case we got a red light, when my mobile rang.
‘Hello? Is this Jocelyn Moorhouse?’ said a voice in a cheerful Norwegian accent.
‘Yes,’ I replied, mystified.
‘This is Dr Lovaas. I have been told it is extremely important that I call you.’
I nearly dropped the phone. ‘Thank you for calling me!’ I gushed, in shock. ‘I am desperate to get my little girl, Lily, into your program. They tell me it may not be until later in the year, but—’
‘Don’t worry, she can start next month,’ he said. His voice was warm and friendly. ‘It is all arranged. Please make an appointment with my office to come and see me as soon as you can.’ Then he asked me how old Lily was.
‘She’s nearly three. Is it too late? Will she still be able to make progress?’
‘It is not too late,’ he said. ‘She will make lots of progress.’
He hung up. Cori looked at me in the rear-vision mirror and said carefully, ‘Was that...who I think it was?’
‘Yes,’ I said, my heart bursting with relief and gratitude. ‘Dr Lovaas is going to help Lily.’
19
I demand that a film express either the joy of making cinema or the agony of making cinema. I am not at all interested in anything in between; I am not interested in all those films that do not pulse.
FRANÇOIS TRUFFAUT
PJ took over the job of finishing the second draft of Unconditional Love for me. He had fallen in love with the characters and I gave him my blessing to direct the film. After My Best Friend’s Wedding was a worldwide box-office hit, he had many movie offers, but he wanted this to be his next film. It was an enormous gift to me, and an act of true love. Jerry Zucker offered to produce for PJ, and together they convinced New Line to make the movie.
Unconditional Love Page 17