Autism diagnoses are on the rise. The reasons are elusive, but understanding the disorder doesn’t have to be
Los Angeles magazine, September 2010
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If you live in Los Angeles and autism hasn’t yet made an impact on your life, it will. There is a 1 in 110 chance that a child born today will be diagnosed with an autism spectrum disorder—make that 1 in 70 if that child is a boy. A child born in L.A. County is more likely to be diagnosed with an ASD than anywhere else in California; recent studies have pegged the local diagnosis rate at two to four times the state average. In 2000, there were about 2,800 autistic students in the Los Angeles Unified School District; last year there were more than 9,400.

It could be a boy in the neighborhood, a coworker’s daughter, a nephew, a friend’s toddler. Or maybe your own child. Gradually you come to realize all that odd behavior—the hand flapping and jumping, the delayed speech or avoidance of eye contact, the obsessive repetition, the fear of loud noises, the social isolation—is more than mere eccentricity. And suddenly, with a single word, the entire future you envisioned as a parent is turned on its head. L.A. isn’t just home to staggering numbers of ASD cases. It was on the campus of UCLA in the 1960s, when little was known of the disorder, that psychologist Ivar Lovaas developed applied behavior analysis, a 40-hour-a-week approach of carrots and sticks that has become the dominant autism therapy in the Western world. From USC to Childrens Hospital to Cal State Northridge, researchers continue to study treatments and offer pioneering early intervention programs. The city is also home to the Help Group, the nation’s largest nonprofit provider of autism education, with campuses in Sherman Oaks and Culver City; the movie industry, which has informed the world’s popular conception of the disorder (it’s not all Rain Man); and those famous parents of children with autism who speak out on talk shows and in best-selling books.

In the pages of this section you’ll hear from mothers and fathers transformed by autism and adults who have wrestled with it for decades. You’ll find tips on schools, what’s OK—and not OK—to say to the parent of a child with autism, and where to begin if you’ve just received a diagnosis. What you won’t find are definitive answers about causes and cures—there are none. But we do tell you what it’s like to live with the disorder. To those already living with it, we say this: You are not alone.

Angie Dickinson Breaks Her Silence and Reveals the Heartbreak of Mothering a Daughter with Asperger's
by Ed Leibowitz (Subscribe to Ed Leibowitz's posts)
Sep 29th 2010 10:00AM
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Nikki didn't speak until she was 3 years old, but then Einstein didn't either, and now they believe he might have had Asperger's. The doctor used to say, "If she wants the ball, the reason she's not talking is because you're giving her the ball before she asks for it." I think that was half true, but she was obviously storing a lot of information, because one of her first words was "meditate." That's the word I'd use when I'd see her sitting in her infant seat on the bench looking out at the trees and the sky, so she probably got it from me. She always loved when I would tell that story. She was proud of it, too.

People talked about my legs, but Nikki had legs more like her daddy's -- shaped great and very strong. As a kid she was wonderful at gymnastics, horseback, ballet, scuba diving and swimming. When she was only 4, she could play piano like a prodigy. She'd make up songs with fast rhythms and notes that all went together. Once when Nikki's paternal grandfather was out here, we sat listening while she played for us. When she finished, he said, "I know this sounds silly, but I haven't heard any wrong notes." There were none. Funny, but neither one of us considered that Nikki might have inherited some musical ability from her daddy as well. One of the original songs she played for us was called "I Can't Cope with My Purple." How interesting, since not having the ability to cope is the key to her disease.

I find most people don't absorb the phrase when I tell them that with Asperger's, you've got no coping skills. People think, "Oh, coping skills -- that means that you can deal with it if you sprain your ankle or you didn't get the job." The other person does not know and will never know that it means not being able to cope with anything -- any noise that bothers you, any disappointment, any fear, any pain, any strain, any sadness. Anxiety, frustration, abandonment. Loss, fear of loss. You have no way of blowing it off. It affects every breath you take.

One of the early odd things Nikki started doing was cutting all the hair off her dolls and off the manes and tails of her toy horses. Later on, around 4, she began saving everything -- a broken toy, a piece of glass, an old battery, dog poo, if we didn't happen to notice -- in a mound about a foot and a half high on top of a dresser in her closet. She would come up with new names for herself, like "Yellow Collar" or "Instead Blender." So you had to call her by those names. You don't address your child much by her name anyway -- it's "Honey" or "Sweetheart" or "Come over here" or "Get the hell over here!" She must have been about 5 years old when she decided she was Lorne Greene. She never watched "Bonanza" -- at least that I know of -- but she was Lorne Greene for months. When she had some exploratory surgery on her eyes, she wouldn't let them put the wristband on unless it said Lorne Greene. So they had to make two bands, and she was Lorne Greene. One day we were at the doctor's office, and who should be at the end of the hall but Lorne Greene. I introduced him to Nikki. I don't know what I said Nikki's name was, but after that Lorne Greene was over for her. Go figure.

I had decided not to work too much, especially away from home, until Nikki was 7 -- since in the Catholic Church that's when you reach the age of reason. In 1974, I took on the lead role on "Police Woman," which would give me a chance to act and still be a mother without having to leave L.A. But I pretty much took care of her for those first 7 years -- thank God. I think that's one of the reasons for her incredible progress: The total love and the total joining. I was continually keeping her connected, talking to her, hugging her, keeping her in a realm of comfort and familiarity, not letting her "drift into space."

We enrolled her at the UCLA Lab School, an experimental elementary school for kids of all backgrounds, some of them disabled. By then Nikki was so easily picked on, so easily criticized and ignored. She didn't consider herself an oddball, but she knew people stared at her because of what her eyes looked like. Still, she did manage to make friends with kids who were more understanding and nicer to be with.

I once asked Nikki what her favorite year was. "When I was 10," she said. "That was the sexy year." At UCLA she was friends with four or five girls who were as normal as they come. They called themselves "Judy's Kids," after those wonderful Judy Blume novels about adolescents going through puberty. I took pictures of them all at parties, and Nikki's always one of the gang; she seems to be having as much fun as everybody else. She seemed so perfectly normal then -- despite the obsessive talking, the shaving hair off the dolls, the upsets and frustrations. Sure, Nikki broke her glasses at times, and as she got older she would tear pages out of books or kick a wall once in a while out of sheer frustration. When you can't cope, you grab at the closest thing around. For me, these were just some of Nikki's "difficulties." I didn't understand why she couldn't do things or deal with things, so I couldn't help her do them or tolerate them or change them. I just found her excessive.

In the early '70s, you have to understand, we did know about mental retardation, and maybe a few doctors talked about autism, but how could Nikki possibly have either of those when she could express herself, draw, and play piano so brilliantly, when she had a great sense of humor, did well in school, and got along so beautifully with her friends? How could somebody say there was anything really wrong when we'd never met or even heard about anyone who was going through what she was going through?

Burt was much more into pushing Nikki to be on her own than I was. He'd tell me, "Let somebody else do that for her -- take her to school or whatever." For Burt and me, dinners had been about candlelight and conversation, but for Nikki, dinner was a time to talk endlessly about horses and gymnastics and imaginary friends. Afterward, when she was in therapy, Nikki would be told she was not the center of the universe. But she was. Remember, isolette-isolation. That made her the center of her own universe. She always felt, as extreme preemies do, that she was not grounded and not part of our universe. So Nikki was tough. She also had needs, and they had to be met constantly. In these kinds of situations the father usually can't understand why the mother just can't make everything right. Most fathers either blame the mother or inadvertently blame the mother. They lose the love and then they lose the interest and then they're gone. Burt and I split up in 1976 after 11 years. It's really, really hard, and I don't blame anyone for leaving.

When Nikki was 14, she became a Sikh. The Sikhs were loving and they were gentle -- which Nikki had to have. Perhaps the uniformity of the dress and the rituals made her feel like all of them as opposed to an outsider being looked at and stared at. I never asked why. She loved it, and that was all I needed. It lasted two or three years. They gave her the name Sat Kartar, which we didn't think translated to anything exciting at the time. I later found out it means something like "Walker of Truth." We would get up at 3:30 a.m., and I would drive her down there for sadhana, the devotionals you had to do before sunrise. I've got one picture of Nikki in her white turban with a rat sitting in it. She's holding another rat. Nikki loved the rats. We had 13 at one time. That's a lot of rat shit.

Being a New Yorker, Burt was very pro-psychiatry. In his world you did that sort of thing -- go to psychiatrists. I'm from North Dakota, and there we didn't. We go barefoot. Nikki began getting psychiatric treatment when she was about 8. The psychiatrists had no answers. There was one I would kill if I could get away with it. He'd tell me that when she'd act out or keep talking or repeating herself, I should just say something like "doorknobs" or "spaghetti." Something to make her go "Hmmm?" That's hardly explaining why she can't cope. He didn't get to the heart of what she needed at all.

Burt still believed Nikki was not doing well enough when she was a teenager and felt that it would be good to get some distance from me, because I was very symbiotic and too permissive. And I thought, Maybe he's right. Maybe that's what she does need. Perhaps I'm too close. That's the reason I gave in. The place we found for her was the Constance Bultman Wilson Center in Faribault, Minnesota. I kept telling Nikki that all kids go away to school to learn and grow on their own without their loving mamas. I convinced her, I guess. We flew to the Wilson Center in August of 1983. Weeks after she arrived, she called me and said, "It's not a school, Angie. It's a hospital." One of Nikki's psychiatrists back here told me, "Be prepared. It could take as long as nine months or even a year and a half for her to get well." She was there for 10 years.

We did have a lot of phone contact, and I would see Nikki at least four or five times a year. They gave me permission to take her on trips to places like the Canadian Rockies, the Tetons and the Yucatán. Once when I flew out for Thanksgiving, the director of the center wanted to invite Nikki and me to Thanksgiving dinner, but we'd already gone out. The local truck stop was the only restaurant open that day, so she called there. A girl picked up the phone, and the director asked her if Angie Dickinson was there. The girl thought it was a joke. "Yeah," she said. "She's sitting right here, next to Robert Redford." We actually went to that truck stop a few times.

Nikki did make some friends at the Wilson Center and had a couple of jobs. She did amazingly well, especially considering what I know now about the extent of the problems she was dealing with and how completely incapable of helping her the center was. She studied piano, but it got to the point where the strain of trying to see those notes became too much for her eyes. (The glasses she wore made her see things smaller than they really were. Try looking through binoculars from the other end-that's how Nikki saw things. Little things became even littler.) So she gave up the piano and began drumming lessons; she was a natural drummer. She played barefoot. She could sit in with the band and keep up with everyone, even if she didn't know what the songs were. Burt did a concert for charity in Minneapolis once, and he let her be the drummer on "Heartlight." Mrs. Hubert Humphrey was in the audience, and I have a picture of her presenting Nikki with a bouquet of roses.

When Nikki entered the Wilson Center, she had beautiful thick hair that ran down past her shoulders. Washing, grooming, general hygiene -- these were all burdens for Nikki. At home she had been used to taking showers for as long as 25 minutes, obsessively scrubbing and rescrubbing her arms and legs, but at the center they wouldn't allow her to stay in anywhere near that long. She ended up not washing her hair much, and after a few years of their bitching at her to get it clean, she said, "I'll fix it for you." She buzzed it off and kept it that way. I'm pretty sure she did it out of spite, but when anyone asked her why, she said, "For convenience."

They were trying to make her into something she was not -- somebody who could hold down a job. Somebody who could drive. They forced her to drive, which was insane. She totaled one car and wrecked another pretty good. They were trying to make her like everybody else. Her psychiatrist there told her, "Nikki, someday your mother is going to die, and then you're going to have to be responsible for your own self" -- which put her into a spiral she never got out of.

Nikki wanted to be a geologist, so when she was about to leave the Wilson Center in the winter of 1992, I started to look for schools with geology programs. Cal Lutheran in Thousand Oaks had a very good one, and I knew she would like that area. It's about an hour northwest of L.A. -- it's beautiful and quiet. When Nikki was out here on leave, we found an apartment close to the university, and from Minnesota that's where the moving truck went. There was a fantastic karate studio nearby, and Nikki began lessons and got so good, she earned her green belt.

At Cal Lutheran she had great teachers. She could only handle one class a semester with her poor eyesight. She did great on tests, of course, but writing was difficult. I missed one of her oral presentations, and she always said, "I wish you could've been there. I was terrific." I just loved her tenacity and her guts. Imagine what this brain could've been had it not been afflicted with so much.

Most geology students study earthquakes because they're part of the course work, but earthquakes are what made Nikki want to study geology in the first place. She loved feeling the power of earthquakes, and she always wished they would happen more often but without all the devastation. Most people feel like they're leaving the ground during an earthquake, but for Nikki it was one of the few times that she felt grounded, that she truly felt the ground. Sylmar in '71 was her first. When the Northridge quake -- the huge one -- hit in '94, she was about to come home from vacation in Hawaii and she missed it by less than 24 hours. She was devastated. Thank God for her karate master, Mr. Graham. He helped her through one of the most difficult times of her life. He was one of her most beloved friends to the end.

The first time I read about Asperger's was in Newsweek. My sister sent the article to me and said, "This sounds just like Nikki." The article is from July 2000. I still have it. I circled the last paragraph where it says that an institution is the last place these people should ever be sent, but it was too late for Nikki. I finally went to UCLA, and after examining her, the doctor there said she might have Asperger's. I said, "Doctor, she does have Asperger's." He didn't disagree. For Nikki, knowing what she had just didn't help at all. She still simply couldn't cope.

The noticeable deterioration came in the last 10 years of her life; it was horrendous toward the end. The worst seemed to start when I moved into a new house in '94, and the helicopters drove her crazy. Helicopters, lawn mowers, motorcycles, leaf blowers, and weed whackers were like a drill in her ear. She just really was suffering. She couldn't get rid of the sounds in her head. And she had to fight the eyesight thing every waking moment of every day all her life.

I finally said to myself, "You know what, Angie? You cannot live your 'other life.'?" I realized that there was only one way to find real peace for Nikki, and that was to stop doing the "other things." Don't go to dinners or functions. Don't play poker. Just pretty much give it up, and I did. It helped. Nikki and I did everything together. We traveled together and saw movies together, even more than before. My life-conscious, subconscious, every conscious was Nikki; I was completely dedicated to her. She just was my soul mate.

In 2006, we went to Alaska, Las Vegas, Russia and Paris. We had melted cheese sandwiches with french fries every night at the top of the Eiffel Tower, and we'd laugh and say, "This French food is great." We loved Tahiti. Nikki went 31 times. (She counted them in her passports.) It's not only warm and hot there, but it's beautiful and peaceful, so her brain could really have a wonderful few days.

Nikki couldn't bear the thought of my death. It was obvious that the obituaries were filled with people my age. I asked her once about it when it became so overwhelming for her, and she said, "When you turned 70, I realized it could happen." It hit her hard -- the realization she could lose me and be left alone without somebody who cared about her or knew her needs. No one could take my place.

She talked a lot about suicide. She was very open about it, even to people she didn't know well. She read "Final Exit," a book about planning suicide, and she found that asphyxiation was the most peaceful way she could do it -- like going under anesthesia at the dentist.

What could I do? I had promised her I would never ever let her go into another hospital -- never -- and I meant it. One time when we were being lighthearted, I said, "Nikki, what would my life be without you in it?" She said, "Oh, you will be laughing on the phone and telling jokes and playing poker before you know it." She didn't know how much I loved her and would miss her and was entwined with her -- how much I wanted to make everything right for her. But I couldn't.

On her last Christmas Eve we went to church services. Nikki had always wanted to sing like most people, but she really couldn't, maybe because singing is so much about bringing out what's inside you. It's about letting people know how you feel and who you are, and Nikki had always been isolated from the outside world and so unable to get through. But that night Nikki just sang and sang. I could hardly hear her over everybody else, but when I looked at her, I smiled at how much gusto she had singing those Christmas songs. She was free and at peace at that point because she knew where she was going.

Ed Leibowitz is a writer-at-large for Los Angeles magazine. His articles have also appeared in the Smithsonian magazine, The Atlantic Monthly and The New York Times. This article also appears in the September 2010 issue of Los Angeles magazine, which features a special section on autism called The Mystery Among Us.