Ben Reich is a quiet, handsome 11-year-old who's growing fast, a fifth-grader with the soft face of a child and the long legs and arms of a pre-adolescent.
Saying hello and shaking hands, he seems like a normal kid, perhaps a little shy and distant. But Ben's ability to engage successfully with a visitor to his family's home is not the ordinary, slightly reluctant politeness of a well-brought-up kid. Ben has autism, and behind the simple act of greeting a stranger lies intense, focused effort by him, his parents, his sister and a small army of experts, therapists, teachers and helpers, sustained over many years. What the average kindergartner effortlessly understands about language and social nuance, Ben has had to learn by rote, bit by bit, with infinite pains.
The experience of the Reich family is an increasingly common one. The incidence of autism in the United States has been growing at the rate of 17 percent annually: The Centers for Disease Control and Prevention's latest estimate is that between one in 500 and one in 166 U.S. children is autistic. Four times more boys than girls are diagnosed--nobody can say why, although there's lots of research going on.
This year, dozens of Tucson families will have a child diagnosed with some form of what is usually called autism, or autistic spectrum disorder. (The correct umbrella term is persistent developmental disorder, which covers five diagnoses: autism, Asperger's disorder--which is similar but less severe--and three other related neurological disorders. All five appear in the first years of life and involve impaired language and social learning. No one actually knows whether they're really one extremely varied disorder, or 100 diseases with overlapping symptoms.)
The disorders on the autistic spectrum are not psychological, as was once thought, but neurological--they involve physical differences in brain structure that can be seen on MRIs and in autopsies. These differences cause a wide range of difficulties of varying severity, which, experts now believe, may all derive from disturbances in the way the brain organizes and integrates sensory information. The new science of cognitive psychology suggests that the essential experience of autism is a flood of chaotic sense-data that swamps the autistic person's ability to make sense of the world. It is thought that the deficits in communication, understanding of others and social interaction, and the rigid, repetitive behavior that are the hallmarks of the autistic spectrum, all arise from a fundamental difficulty in noticing and learning certain sorts of things.
Autism is not, however, a form of mental retardation, although it can overlap with it. Some autistic people are extremely bright, and the remarkable "savant" or "splinter" skills of some low-functioning autistic people--like the eidetic memory of Dustin Hoffman's character in the movie Rain Man--challenge our ideas about what intelligence is. Neurologist Oliver Sacks, for instance, has written about a teenager who can draw a street-scene perfectly after just one glance, in perspective and with every detail in place, but who cannot cross that street alone or carry on a conversation.
The autistic spectrum is wide, its causes obscure, and autistic people can have any combination of symptoms of different severity. Of the 78 or so autistic-spectrum children born in Pima County last year--a figure arrived at by applying the CDC's high-end number to the county's 12,971 live births in 2005--some will have relatively mild impairments; others will have severe deficits in language, social skills, awareness of the world around them and in their capacity to care for themselves. Some will have other medical problems; others will be physically healthy. A few will show signs of abnormal development in infancy; more will stop developing language and start to withdraw some time before their third birthdays; many will suddenly, horribly regress, losing the language and social knowledge they've acquired as apparently normal babies and toddlers.
Some will respond dramatically to special diets and other biomedical treatments, and to intensive educational programs; others--sometimes those who aren't as obviously impaired--will learn with excruciating slowness. The enormous range of difficulties and outcomes is one of the aspects of autism that makes it so hard for families.
And at the beginning, each family copes with the terrifying diagnosis alone.
Ben was a happy, normal baby, a good baby. His parents, Jonathan Reich and Cathleen Linn, have the videotapes to prove it. They noticed some unresponsiveness to sound when he was tiny; he was diagnosed with moderate hearing loss at nine months and fitted with digital hearing aids soon after his first birthday. He picked up signs and single spoken words quickly, and was obviously intelligent. He was, and still is, cuddly: He had none of the tactile hypersensitivity that's often an early and particularly distressing symptom of autism.
"After he got the aids, he just started tearing through learning, like he was making up for lost time," says Reich. "He progressed so fast for a while, and then just stopped.
"If you talk to parents of autistic kids, almost all of them will tell you their child was fine up to a point when there was a change. His language stopped improving. That was what we noticed."
But his pediatrician was unconcerned, and the Reiches were first-time parents. They tried not to worry.
Then Jonathan Reich had the chance to observe Ben, then 3 1/2, at a Halloween party at the Center for Hearing Impaired Children preschool (at the Arizona School for the Deaf and Blind), and as he stood there, he realized that something was indeed very wrong. The children were playing trick-or-treat.
"Autism had been at the back of my mind for a while, but that was when I knew," Reich says. "It was seeing him with the other children. We lived all the way across town, and so we hadn't had many chances to hang around and watch. What I saw that day was that these kids were Ben's age and also hearing-impaired, but they were verbally and socially miles ahead of him. He was the only one who had no idea what trick-or-treating meant. He was making an effort, trying to be part of what was going on, but it was obvious that he didn't grasp the simplest fabric of social interaction."
Getting Ben diagnosed was difficult. That seems to be a common pattern: worried parents and dismissive physicians.
"The pediatricians know so little about it," says Helen Curtis, mother of a more severely autistic 6-year-old son, Ashton, and former board member of the Pima County chapter of the Autism Society of America.
"Autism is getting to be so much more common that they're becoming more aware," she says, but pediatricians are still reluctant to diagnosis it.
Ron Barber, the recently retired district program administrator of the Arizona Department of Economic Security's Division of Developmental Disabilities, agrees.
"We've made strides in finding these children as soon as possible--which is critical--and in getting the families information and services, but this disease is just emerging as a high-rate diagnosis. There's still work to be done getting physicians into the loop," he says.
"The other developmental disabilities--mental retardation, cerebral palsy and epilepsy--are much more familiar to doctors, especially those who've been out of medical school for a while, and for all these other conditions, the physician knows just what to do next. Autism is baffling--for everyone."
Ben Reich's pediatrician was not helpful, but the Reiches insisted on a referral to a pediatric neurologist who finally made the diagnosis. Along with the news that their son had a pervasive and probably lifelong disability, he handed them an autism pamphlet and wished them good luck.
That was it.
"It wasn't that he was mean or indifferent--that was all there was," says Reich.
"So we went through what we now know is the universal experience of parents of these kids," Linn says. "You immediately have this huge research task, because the doctors can't tell you much, and you have to start scrambling before it's even sunk in. There's no standard treatment, but everything you hear is about how the sooner you start, the better the child's chances. We had to decide for ourselves what he needed, and then we had to find our way to services.
"I simply could not believe it after the experience we'd had with Ben's hearing. Services for the deaf here are absolutely great. After Ben was evaluated (for deafness), the audiologist informed the Center for Hearing Impaired Children, and the next day, a speech therapist called to set up appointments in our home. There was a preschool; there were support groups; there was information about hearing aids. It was all laid out.
"With autism, it was the exact opposite."
Everything seemed to happen at once to the Reiches that fall. Sadie Reich, Ben's charming younger sister, now 8, was born earlier that same October, and Reich's father had just begun showing signs of Alzheimer's disease. Reich became depressed.
"You go through a period of mourning for the child you thought you had, the child in your mind," he says. "It was a bad time."
Reich and Linn, both attorneys, also felt the financial impact of autism. Faced with caring for both a newborn and a preschooler whose needs were enormous but as-yet undefined, Linn quit her job. (She is now an assistant state attorney general.) Reich had recently changed his specialty and was building a new practice in elder law. And in anticipation of the new baby, the family had moved into a new house with a bigger mortgage.
"We got through that year without serious debt only because both my parents, for the first and last time, helped us with gifts of money," says Reich. "That saved us."
Talking with other parents of autistic children--a community that makes heavy use of the Internet--Linn heard that they should contact the Pima County office of the Division of Developmental Disabilities.
"Somebody mentioned that there were services there. We were lucky, I guess, in our timing, because just a few years before, some parents had gone to Ron Barber and asked him to fund an educational program that they thought would help their kids. After we looked around, we thought that it was what Ben needed, and thanks to DDD, it was possible."
A researcher at UCLA had developed what's now known as Applied Behavioral Analysis, a program of highly structured, intensive, one-on-one teaching that was helping autistic children make previously unheard-of progress. Nearly half the autistic children who started ABA when they were very young--preferably before they were 3--and who got 30 to 40 hours of instruction a week outgrew their impairments, and another 40 percent remained impaired but improved significantly. The intensive instruction was incredibly expensive, but the parents who'd come to Barber wanted their children to have what looked like their best shot at normalcy.
It's not too much to say that Barber is a hero to the families of the developmentally disabled in Southern Arizona. Arizona--uncharacteristically--provides probably the best services for the autistic of any state in the nation, and Barber, backed by activist parents, established the model for the state in Pima County.
Helen Curtis, who moved to Arizona from Missouri because she couldn't afford Ashton's education and therapy there--it was running $50,000 a year--simply calls Barber "the bomb."
"I hear people complain about services here, and I just tell them, 'Hey, try Missouri.' They have no idea what it's like in the rest of the country. Everywhere else, all there is for these kids comes through the school districts, and that just does not work."
Arizona has not always been a model for progressive treatment of the developmentally disabled.
When Barber started working for what was then the Bureau of Mental Retardation in 1974--the division serves people with mental retardation, cerebral palsy, epilepsy and autism--the only services were provided in three shockingly overcrowded, understaffed state institutions.
"If you had a developmentally disabled family member, and you needed help, you had to go to the Superior Court and petition to have that person committed. The facility for Southern Arizona, at Coolidge, had been built for 350, but when I toured it in '74, there were more than 1,200 people housed there. Many were drugged all the time so they'd be less trouble. It was a horrible choice people had to make," Barber says.
Over the last three decades, the division has moved its clients out of the institutions and back into the community. All but one of the institutions have been closed--about 130 people still live at the Coolidge facility at the request of their families--and the division now devotes nearly all of its resources to home- and community-based services. Deinstitutionalization and normalization were well underway by the early '90s.
"That's when three parents of autistic kids came in and said, 'Look at this program--this is what our kids need.' The research was there. We started using Medicaid money to fund these intensive interventions, plus respite," Barber says.
"These people really needed help--autism is one of the most challenging disabilities out there for families. People are simply devastated by the lack of ability to communicate." (Curtis says she's heard that the divorce rate among parents of autistic children is 75 percent.)
"And these intensive interventions work. They improve these kids' lives, their chances for the future; they help the families, and they're a great investment for the taxpayers of Arizona. But the intervention must begin early; it must be intensive, and it must be consistent. You can't do this in a watered-down way. The research shows that, too."
The DDD's program is no cakewalk. (There are no cakewalks with autism.) First, the child undergoes a detailed evaluation by an expert--and eight years ago, those experts were still few and far between. Ben was evaluated by Elaine Williams, a child developmental specialist from Baltimore who would fly into Tucson a few times a year to do evaluations. The child must be diagnosed with autism--not with a higher-functioning disorder like Asperger's--to qualify for services. Then, while the division will pick up small fortunes in bills for full-time, in-home teaching, the parents must find and hire the teachers, get them trained and certified--and pay them while they're going through that process. Parents also must find, hire and pay a qualified educational consultant who trains both them and the teachers, and who designs and oversees each child's program.
This last requirement, created by federal restrictions on the categories of professional services that Medicaid will reimburse, has kept some low-income families from getting help. The division is now conducting a pilot program that borrows money from the state's Department of Health Services to pay for educational consultants for lower-income families.
"I believe in following policy," says Barber, "but if you're working for the government, it's also important to keep in mind that policies were written by human beings, not handed down from heaven. I'm certain that the one-year assessment will show that the program is cost-effective."
It took six months just to get Ben evaluated. In April 1998, when he was nearly 4, Williams reported that he was two years behind socially, and, among other problems, his ability to communicate was severely limited:
His pointing to something he desires or wants to share is somewhat limited, although he looks in the direction he wants to indicate. His expressive communication consisted primarily of two-word phrases, with an occasional four-word sentence. Pronoun reversal was heard occasionally when he said "help you" when requesting assistance for himself ...
(Pronoun reversal, which reveals the deep strangeness of autistic perception of self and others, is a classic symptom of the disorder.)
Since Ben was verbal, he did not need to start at the most basic level of instruction, but he needed intensive intervention if he were to ever have a chance at a normal life, and he needed it immediately.
What this meant for the Reiches was that Linn had to set up and run a full-time special-ed school in their home.
"For a couple of years, it was just this huge thing going on here, all these people coming in and out," says Linn. "We had the habilitation workers here--that's what they call the specially trained teachers--and my big contribution there, I've got to say, is that I hired some great people. They became like family members. And then there'd be the behavioral consultant, and the speech therapist, and the occupational therapist, and the auditory integration therapist, plus I'd be coordinating with his regular preschool teachers, and the teachers at the CHIC preschool."
The heroic effort paid off, but it continues. Even now that he's a fifth-grader at Schumaker Elementary in a mainstream classroom, where he got the equivalent of all Bs and an A in math on his last report card, Ben's education is an expensive, time-consuming proposition. The Tucson Unified School District pays for his full-time teacher's aide, Karen Bettenhausen, but he also gets tutoring at Sylvan Learning, which costs the Reiches $600 a month. He takes tae kwon do, which both the Reiches and Bettenhausen think has been valuable in boosting his confidence and attentiveness. Jonathan Reich works with him and with Sadie--"so it's not just something Ben has to do"--every evening.
"He has to work much harder at many things than the other kids, and he does it without complaining. But as he gets more in touch, he's noticing that he's different. He's started saying that he's stupid, which he certainly is not. Autism is very hard to explain," says Reich.
Probably the biggest challenge for autistic kids in school is managing their attention. Their tendency to experience the world as a barrage of details means that they have trouble concentrating on things that they don't understand, and difficulty letting go of things they do. Much of Bettenhausen's job is helping Ben focus his attention properly. It's something he's getting better at all the time.
The transition to middle school is a big worry. (The worries that come with having an autistic child are the same ones familiar to most parents; they're just more acute and last longer.) Schumaker Elementary is one of the best schools in TUSD for special-needs kids, and Ben has been especially fortunate with his teachers.
Bettenhausen, who has been with Ben for four years and is deeply attached to him, is going back to school to get a teaching certificate, so he'll have a new aide. He'll also have to cope with the normal social brutality of middle school. As this story was being written, the Reiches found out that Ben will be going to Utterback, their first choice for him.
"He's going to do great in life," says Bettenhausen. "He'll always be eccentric, but I believe he's going to do fine. I only wish every kid with a special need had a family like Ben's. I see kids here who really could use special-ed services, but their parents are afraid they'll be 'labeled.' I'll tell you, not getting the help is worse than having a label. These kids need their parents to get in there and advocate for them."
Being the parent of an autistic child is difficult, but it's not as baffling as it used to be. With the huge growth in the numbers of diagnosed cases, parents aren't quite so isolated, and there's more information circulating. While the families of autistic children in Tucson have been fighting to get their children what they need, they've also been building a community.
"It's the parents who've made things happen all along," says Barber, "parents who will do just about anything to do right by their children."
People who work with the autistic have also stepped up. One is Pam Crooke, a member of the clinical faculty of the UA's Department of Speech, Language and Hearing Sciences, who's specialized in autism for the last 14 years.
"Autism is a disorder of communication and socialization, so speech pathologists are typically on the front line," she says. "We're the ones the parents bring the kid to, saying, 'Is this really just a speech-delay?' We see what they go through."
Crooke works part-time for TUSD in the exemplary autistic program at Miles Exploratory Learning Center, and is a founding board member of the Tucson Alliance for Autism, which runs Pima County's only center for autistic people.
The center opened just last summer on North Country Club Road in a small building donated and renovated by builder Phil Canale, who has an autistic family member. Its first offering was a standing-room-only class in social skills, taught by Crooke and several of her grad students. Before last summer, there was no place in Tucson that offered the type of incremental social training that autistic children need. Ben Reich was in the first class.
Since last summer, the center has rapidly added multi-disciplinary evaluation services, individual speech and language therapy, music therapy and biomedical consultations by a developmental pediatrician from the UA.
The alliance was formed after Crooke and a colleague sent an inquiry to the local autism listserv, asking whether anyone was interested in setting up a center for people.
"Within 24 hours, I got about 50 phone calls, several from people associated with groups that had been talking about doing the same thing," she says. "It took off very fast. We've seen more than 100 families and done about 45 evaluations since we opened.
"It's the dire need of parents that has pulled this together in a very short time," says Crooke.
Among the Alliance's plans for the future are more services for adults with autism, a two-day educational conference for families this fall, and a program to recruit, train and certify habilitation workers so that families still reeling under the shock of diagnosis won't have to do it themselves, as the Reiches did.
And that's good. These folks already have their work cut out for them.