Reaching Out to a Remote World

Getting the diagnosis of autism for a child is just one step down a long, rough road--a step that too often comes late.

It takes time for parents to realize something’s wrong with their child. It takes more time still for professionals to agree there’s a problem and figure out what it is.

A pediatrician might suspect a hearing disorder: You can clang two pots and Johnny won’t even turn his head. A speech therapist might think it’s a language problem: Jenny isn’t talking at age 3 except to echo the words of other people. A psychiatrist might decide Jimmy is emotionally disturbed: He has screaming fits and won’t do what he’s told.

And getting a diagnosis is only the beginning. Next comes perhaps the hardest struggle of all--figuring out the best way to help your child and battling to get services.

All the time the clock is ticking. All those minutes and months of childhood gone. There is no known cure for autism, but the best prognosis for an autistic child is when intensive interventions start as early in life as possible.

Delays, though agonizing, aren’t surprising. Doctors haven’t traditionally had their antennae tuned to autism, a devastating brain disorder in which children are mysteriously cut off from interacting with others around them. There’s no blood test to render a simple “yes” or “no” diagnosis: Experts must rely on involved assessments that probe an array of behavioral traits.

And knowledge about autism is primitive, compared with knowledge about diabetes or heart disease: “It’s like where they must have been at the turn of the [last] century with diabetes, when they knew that the urine was sweet,” says Dr. Ricki Robinson, a La Canada-Flintridge pediatrician and a clinical professor of pediatrics at USC School of Medicine.

But change is coming. The sharp increase in children diagnosed with autism means that the disorder is on doctors’ minds like never before--so autistic children are less likely to be overlooked or misdiagnosed.

And that means--contrasted with former years--that the fate of many autistic children is far less likely to be an institution, group home or lifelong dependence on parents.

Many children can be at least partially coaxed back out from their remote, inner worlds and learn to talk with others, go to regular schools, hold down jobs, have friends.

“For so long, people had a misunderstanding of what autism is--they thought that interventions were a waste of time,” says Betty- Jo Freeman, professor of medical psychology at the UCLA School of Medicine. “It’s not true at all. The natural course of autism, for children who get intervention, is one of improvement. Clearly, from a clinical point of view, we’re seeing kids doing so much better it’s unbelievable.”

Even so, desperation has created a climate in which shaky reports of miracle cures are easier to find than solid scientific studies.

“Every year it’s something different,” says Ami Klin, a psychologist with the Yale Child Study Center in New Haven, Conn. “Parents need to be tremendously skeptical.”

And diagnoses often come with scant direction, so parents can spend months or years researching how to find help themselves.

“You’re told: ‘Your child has a severe disability, there’s no cure, about no research going on, we don’t know how to treat him--goodbye!’ It’s incredible in this day and age,” says L.A. resident Portia Iversen, mother of an autistic child. Frustration led Iversen and her husband, Jon Shestack, to start Cure Autism Now, an L.A.-based nonprofit group that funds autism research and which has campaigned fiercely for ramped-up government funding.

And though federal law requires school districts to provide “free appropriate public education” for children with disabilities such as autism, there can be anything but agreement about just what “appropriate” means.

It is the perfect breeding ground for bitterness and conflict--for the evolution of a survival-of-the-fittest system where well-heeled and educated parents get better services for their kids because they can retain mediators, lawyers and independent experts and can better press their case in intimidating school district meetings.

Being scrappy makes a world’s worth of difference too.

“The most successful parents are the ones who walk into a meeting with the mind set that they’re walking into a fight--that they’re going to stand their ground and do battle,” says Frank Paradise, executive director of the Autism Society of Los Angeles. “The parents who walk in intimidated and meek will not get half of what those other parents get.”

What parents want to getis some way to break down the social disconnectedness that lies at the very core of the disorder.

Unknown Causes, Widely Varying Symptoms

Autism was first described by psychiatrist Leo Kanner in the 1940s. Its cause or causes are still unknown, although both genes and environmental factors appear to be involved. Its symptoms and severity vary tremendously from child to child: These days, in fact, it’s described as a “spectrum” of disorders.

Autistic children may have mental retardation or be uncannily brilliant. But what they have in common are brains that don’t seem to be wired to pay attention to signals even babies react to instinctively: A human face. A mother’s voice. Children playing. People stuff.

Thus it’s no wonder that an autistic child tends not to meet a person’s gaze or want to play, learn to speak or want to communicate, pay any more mind to a mother cooing over a crib than a leaf twirling in the wind.

Studies, moreover, reveal that the disorder affects many parts of the brain--structures involved in emotions, critical thinking, learning, judgment and paying attention--creating deficits that place huge barriers in the way of sensing the world normally--and of learning.

The key to reaching the child, specialists say, is to create a way for a child to focus on something long enough and often enough, in a simple enough manner, that he or she can learn.

The results can be dramatic, the battles intense--as illustrated by the experience of the Bothwell family.

Fisk Bothwell, who lives in Long Beach, was diagnosed with autism just shy of his third birthday. As is typical for a child with so-called high-functioning autism, he taught himself to read at a precociously young age but was indifferent to other people and soon stopped talking and making eye contact.

And like many children with autism, Fisk developed obsessions--lining up magnetic letters all day and carrying them to different parts of the room in elaborate rituals that couldn’t be interrupted. Soon, Fisk couldn’t go out in public because he would scream inconsolably when his parents couldn’t give him letters that he saw on signs.

Not long after Fisk’s diagnosis, the Bothwells learned of a therapy pioneered by Ivar Lovaas, a psychologist at UCLA. Called applied behavior analysis, it uses rewards--goldfish crackers, playing with toys, praise--to teach children all kinds of behaviors, lessons and life skills, step by tiny step, in intensive, one-on-one drills.

The idea is to coax a child out from a world where a thousand equally interesting sensations pour in every moment, so he or she can focus on the “right” things--and learn and reconnect.

Applied behavior analysis, practiced with some variations in many clinics worldwide, has been better-studied than most other autism treatments. Lovaas’ research even suggests that some kids can eventually lose all visible traces of the disorder. Experts still hotly debate that contention.

But Fisk, in any case, was so far from “normal” that such debates were hardly germane. The Bothwells decided to try it.

At first, “he didn’t want to come here, he didn’t want to look at me, he didn’t want to sit still, touch ‘blue’--he didn’t want to do all these simple things we were asking him to do,” says his mother, Claire. “And he just screamed holy murder every time we asked him to.”

The Bothwells persevered, and Fisk soon began to make major advances. The family, full of hope, borrowed thousands of dollars to hire and train a team of students to come to their home and teach Fisk many hours a week, under the supervision of the Lovaas Institute. None of this came cheap. The price tag started at $30,000 a year; later it increased to $60,000 a year..

Yet despite a psychologist’s testimony about Fisk’s dramatic progress, the school district refused to pay. Fisk, the district said, was well-served by a special education class at his local grade school, one with 11 other children who had language difficulties stemming from a variety of disorders.

Fisk’s mother says her son received scant one-on-one attention in the class and was making no progress. She and her husband legally challenged the school district--and won services for Fisk. It was to be the first of several legal battles for the Bothwells.

Today, after five years of intensive intervention, Fisk goes to school in a gifted classroom at a regular school. He has friends and loves Pokemon and riding his scooter and is in many ways a regular 8-year-old boy.

He isn’t “cured”: The underlying brain abnormalities causing his autism haven’t miraculously melted away. In a recent psychological test, he still displayed striking gaps in his ability to understand the feelings and motives of other people--”theory of mind” gaps that experts deem central to autism. Recently, he’s had problems getting organized in class--it’s been decided he needs an aide to help him focus--and has told his parents he’s been teased by some schoolmates.

“It’s never going to be over,” Claire says. “No matter how well he does.”

The Bothwells have since helped other parents obtain services for their children--kids such as 11-year-old Maimuna Elliott, whose mother, Haddy, is unable to afford things such as independent psychological assessments to bring to district meetings.

Bruce Bothwell, a lawyer, helped Elliott take legal action against the district, and won Maimuna, too, the right to 40 hours a week of ABA.

“Two weeks into the program, Maimuna was able to come to me and say, ‘I want the remote,’ instead of just coming and stamping her feet and tantruming,” Elliot says. Today, two years later, Maimuna can brush her teeth, zip her jacket, tie her laces. But she still has difficulty starting conversations and speaking in complete sentences.

Where, Elliott wonders, would Maimuna be now if she’d had intensive intervention early?

Providing for the individual needs of many autistic children “is a challenge, especially now that more and more kids are being diagnosed,” acknowledges Warren Finn, an advocate for parents with special needs and a grandfather of a child with autism. “It’s not easy for [the districts]--but certainly the law is clear. It requires districts to provide what that child needs to be educated.”

Yet too often the districts try to squeeze children into whatever programs they have in place, Finn adds, programs parents often believe are inadequate.

School districts see things differently.

“We are very much committed to providing services for the children based on individualized needs,” says Gloria Lopez, an administrator for special education with the Los Angeles Unified School District. “We are not in the business of trying to deny any child what we feel they appropriately need.

“Sometimes,” she adds, “there is a difference between what the parents perceive the needs are versus what the school district feels the needs are of that child.”

Still, even L.A. Unified recognizes it could do better and is trying to improve its services, Lopez says. She is directing an effort, in collaboration with autism specialists, to set up several classes devoted to children with autism--ones where other teachers can learn techniques and take them to their own classrooms throughout the district.

Some of the classes will focus on Applied behavior analysis. Others will use a mixture of teaching methods. The goal, Lopez says, is to bring expertise into the school district and match each child to the teaching strategy that fits him or her best.

Treatment’s Past Taints It for Some

Applied behavior analysis is one of the most-studied interventions for autistic children, but it isn’t the only one and it isn’t every parent or specialist’s cup of tea. Some shy away from it for historical reasons--in decades past not only rewards but also punishments (electric shocks in the ‘60s and spanking in the ‘70s) were used to stop children from injuring themselves or others. Those days are long gone, says Ron Leaf, a psychologist who did research with Lovaas in the 1970s.

“Unfortunately, some people still think of those days and assume that’s what’s used today,” says Leaf, co-director of Autism Partnership, which provides services to autistic children in Seal Beach and several other sites. (Leaf is helping L.A. Unified in its efforts to improve services for autistic children.)

Other specialists feel the Applied behavior analysis approach is too unnatural--too much like “training.” La Canada-Flintridge’s Ricki Robinson, for instance, prefers to draw the autistic child out of his or her shell using a technique called “floortime.”

In this method, devised by child psychiatrist Stanley Greenspan of George Washington Medical School, trained therapists mock “play” with a child in order to engage his or her attention. That way, goes the theory, the child can learn to engage socially with other people as well as learn needed skills.

Greenspan claims much success with floortime, but there are no scientific studies published on the technique.

“No one’s been financing studies,” protests Robinson, who’s also impressed with the results of floortime she’s seen in her practice.

In the end, what may turn out to matter most is engaging the attention of the autistic child--as early and often as possible. There may be more than one way to do that.

But neither ABA nor floor time will be the perfect treatment for all children with autism. Every child with autism is different, and some children don’t respond to these therapies. And autism affects everything from speech to sense of balance--all of which may need special attention.

Meanwhile, in the knowledge vacuum that exists today, alternative, unproven therapies flourish, as parents look for something, anything, that will help their child. Special diets. A gut hormone called secretin. “Facilitated communication,” “auditory integration therapy” and more.

The common threads: glowing testimonies but little hard science to show they work. There may be validity to some of these therapies for some children with autism, experts say--but until the research is done, nobody knows.

Luckily, “parents are getting much smarter and savvier about this kind of stuff--and parents are demanding that services be provided for children. And that is good,” says Freeman.

“Hard work”--absent some miracle cure--”is what works,” she says.

Also in Today’s Times

* For people with Asperger’s syndrome, a milder form of autism, social skills must be learned. A1

* Autism and Asperger’s often run in families. S5

Published Wednesday

* A new state report says the rise in autism diagnoses is unrelated to the measles-mumps-rubella vaccine. https://www.latimes.com/HEALTH/