Alaska's Autism Intensive Early Intervention (IEI) Program May Hold the Answer
by Chris Ridder

August 8 - August 14, 1996 / Volume V, No. 31

-- Lucian Childs

Autism isn't well understood, but there is almost unanimous agreement that it results from an organic brain dysfunction. No one's sure what causes it or whether there may be multiple causes; and no major physical differences in the brains of autistics has been found. The symptoms, which manifest shortly after birth, include language deficiencies, an unwillingness to interact with others, ritualistic and obsessive behaviors, aggression and self-injury.

Though effective treatment was not discovered until recently, professionals have long believed that autistics have the potential for average or above-average intelligence. Many autistics posses advanced mental skills, especially in math, music and visual thinking - yet lack the social skills to make the most productive use of these gifts.

Ill-behaved and ill-suited to participate in the social fabric of humanity, most spend their lives wrapped up in their own world. The prognosis is startlingly grim and consistent across a broad range of studies - about 2% will attain normal functioning, with perhaps 30% labeled "high-functioning autistic." These high-functioning autistics generally show some oddities of behavior, have a tough time relating to others, and have few or no personal friends. The vast majority are doomed to a painful and confused life, dependent on the care of others to survive.

Preliminary results from the IEI program have been encouraging. But although the program has been successful since its inception three years ago this month - it may represent the most cost-effective, workable treatment program in the world - it has yet to attain its stated goal of finding and treating every autistic child in Alaska.

"We started this program out with high hopes," says UAA psychology professor Todd Risley, who heads up the project, "We did one family and it worked so well, we said, 'Let's do it for everybody. It'll be easy.'" The group estimated they'd see four to five students per year, rather than the approximately 10 diagnosed autistics per year who have actually approached the program. Risley bases his approach on the work of UCLA's Dr. O. Ivar Lovaas.

In 1973, Lovaas conducted his now-famous treatment study of autistic children, a methodologically rigorous attempt to apply a behaviorist paradigm to the problem of autism. In 1987, a follow-up study delivered persuasive evidence that his group had successfully "taught" autistic children to be normal. In the experimental group, 47% achieved normal functioning, 40% were mildly retarded, and only 10% ended up profoundly retarded. All but one maintained their treatment gains over time. This study delivered the most convincing evidence to date that autism is a treatable condition, a possibility long considered impossible by many experts.

The road to normalcy

The basics of the technique are simple, but training a team to administer the treatment properly is critical and, according to Lovaas, requires a minimum of nine months practical experience, preferably coupled with a background in psychological and behaviorist theory.

Two components are critical. The intervention must be intensive, comprising at least 40 hours per week over a range of one to three years. Lovaas' control group, which had similar outcomes to untreated autistics, received the same therapy as the experimental group, but for only 10 hours per week. Any small gains this group made were quickly lost.

And the intervention has to be early. There's a window of opportunity that begins with an early diagnosis (most autistics are diagnosed at between two and three years of age), and ends at between five and six years. Why does the window close? The answer is similar to Lovaas' hypothetical explanation for why the treatment works.

Neurologically-oriented psychologists have known for some time that brain structure is not entirely determined by genetic and organic factors. In a phenomenon knows as "brain sculpting," the physical structures of our brains are constructed based on the environment we grow up in during early childhood - in some measure, the biochemical nature of our brains is determined by experience.

While this phenomenon probably occurs throughout our lives, its power is most easily harnessed while our brains are forming, between birth and five to six years of age. This explains how environmental stimuli could serve to physically correct a hypothetically organic brain dysfunction.

In a one-on-one setting with few distractions, the instructor and student sit facing each other at a table. Since few autistics will willingly do this, there's a process of reward/punishment until the child will even sit at the table and learn. Later, words are introduced in a highly directed way. For example, the instructor holds up a picture of a cow and says, "This is a cow, say 'cow'," for which the child is rewarded for the proper behavior.

If, for example, every time Fred puts his glasses on, he gets a bite of food, he learns that putting his glasses on is a good thing. The real hurdle is teaching incredibly complex behaviors like language, while at the same time substituting reinforcers like food and contingent physical aversives (like mild spanking) with social cues - to which autistic children are highly unresponsive.

Everybody on the team and in the family uses the same techniques, the same reinforcers, and holds the child to the same standards to ensure consistency. The entire family is restructured by the professionals to provide an ideal environment for the child's learning.

As the children progress, they are taught to play with others and are 'mainstreamed' into the public school system. After placement in kindergarten, the team's work is largely complete, though regular evaluations and consultations generally continue.

Is cheaper better?

Though further research and replications are ongoing, the implications of what we know already are truly profound. In today's dollars, the average autistic person's care costs $3 million over their lifetime, according to Lovaas. And though Lovaas delivers the treatment at $120,000 yearly average, UAA's Dr. Todd Risley, a former Alaska director of mental health, believes he can achieve success rates comparable to Lovaas for a mere $10,000 per year, employing a slight variation on the method.

Is Risley's bargain as effective? And how is he able to deliver the program - 40 hours per week of intensive, highly skilled behaviorist intervention; sophisticated staff support; batteries of assessments, evaluations and follow-ups; liaison service with the public schools, and so much more - for a mere $10,000 per year?

"We help the family recruit from their own network to get volunteers, which we train," says Risley, "Volunteers are the best way - it's no easier when you pay the team members - they don't stay longer or perform better."

Yet volunteer teams pose a couple of hazards that could affect the efficacy of Alaska's IEI treatment program. "Nationwide, [delivering Lovaas therapy] has been a disaster - [many replications] can't deliver the program effectively," Risley says.

"It takes a hell of a lot of support to deliver 40 hours," says Risley, "and a hell of a lot to keep from destroying families in the process. You can't deliver 40 hours except in exceptional circumstances." It is precisely those circumstances which Risley hopes the program can create.

In Alaska's IEI program, turning normal families into super-families is the first order of business, lest they be crushed under the hefty demands of the treatment team's invasion of every aspect of their lives. This is a tall order. And, says Risley, "With the situation we're in now, we're in over our heads."

Nonetheless, the group has made impressive strides as it graduates its first group of families, and the IEI group sees a positive resolution of their clinical problems on the horizon. "We got into the family business because it's the best way to deliver 40 hours. But that pushed us into how to keep them from falling apart," says Risley, "We're gonna do better with the next families because of what we've learned."

Effective vs. "Appropriate"

The program is experimenting with a variety of funding solutions in the hopes that they can build a larger budget.

Anchorage schools, however, are an unlikely source. Since implementation of the federal Individuals with Disabilities Education Act of 1973 (IDEA), schools have been required to provide an "appropriate" Individual Education Program (IEP) for those with special needs. But Lovaas therapy is in-home care and doesn't fall under the school district's standard avenues of support.

Though to the layperson it may seem that the only proven effective method would be most appropriate, the Anchorage School District disagrees. Dr. John Stamm, supervisor of related service programs for the Anchorage School District says, "Clearly, case law indicates that the IEP has to be appropriate, but not necessarily the best."

But recent court decisions have forced a number of schools to fund Lovaas programs. "When it comes to court, the courts tend to be rational," says Lovaas, "The law rationally decides what's best for the child, and the judge mandates the best place. In the U.S., a person has the right to the most appropriate education."

Stamm disputes the singular nature of Lovaas therapy, and adds that a number of court cases have concluded differently. Thus, the Anchorage School District has no clear mandate to provide or pay for intensive early intervention. Furthermore, he cites the program's demanding nature. "I have a lot of parents who come to me and say, 'You're not going to make us do that Lovaas thing...' The Lovaas method is tough, especially when there are siblings involved," he says.

"Some of the Lovaas stuff we can do," says Stamm, "Our program is pretty much eclectic. We look at the individual needs of the child, but it's not necessarily one-on-one treatment."

Autistic children can place a heavy burden on the school system, and as a result the district can be reluctant to accept the diagnosis. "Lots of them are unlabelled in the schools," says Risley, "There's a de-urgency to label them because they're a burden, and [the district has] to justify the treatment as appropriate."

Stamm adds that the autism diagnosis is not an easy one to make, clinically or politically. "Autistic behavior comes from so many things. And it's hard to diagnose, especially in younger kids. Changes in behavior [at that age] are rapid and common," says Stamm, "It's a big debate. We don't want to stick our necks out and call them autistic, we'd rather just call them developmentally delayed."

As far as statistics on autistic children in Anchorage schools, few are readily available because of the vast number of special needs students, and the way the records are organized. Stamm says the School District has 18,000 special needs students, and 25 autistic students. Most of these students are not in Risley's program, and many are likely beyond the six-year treatment window.

An Attainable Goal

Like smallpox, autism may soon become an affliction of the past. As creative, universal implementation paradigms come to fruition, autistics worldwide will soon see their options for effective treatment expanded. And places like Alaska could see all autistics effectively treated within the decade. Projects like Alaska's IEI program are leading the way in effective, low-cost, deliverable programs.

"This system has the right features for Alaska and the country," says Risley, who believes the treatment can be easily and cheaply exported around the world through telemedicine techniques. The team has already started this process throughout Alaska. "If we can do it in Fairbanks, Cordova and Point Hope," he says, "we can do it in Atlanta, Korea and Nigeria - through mail, phone and videotapes."

Hopefully, the IEI program will get the extra funds required to serve the handful of autistic children that are diagnosed every year in Alaska, through whatever channels are available. Effective treatment saves more than just a few million dollars worth of budget line items in dozens of organizations - the additional value of saving a human mind can't be quantified.

"Functionally, I think we can get 100% of the kids free of autism," says Risley, ""Many will grow up to be on the nerdy side - they won't be social butterflies - but they'll be normal."