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No one knows the cure. No one knows the cause. And nothing can blunt the impact when parents get the diagnosis: Their quiet little baby, who'd rather not cuddle and avoids eye contact, has ASD, Autistic Spectrum Disorder, a chronic neurodevelopmental disability that will require a lifetime of supports and services.

Parents may be stressed and bewildered. Where are all those supports and services?

Few and far between, they'll soon learn. "We have a huge gap between what experts know children with autism should have and what we actually have in terms of early intervention services," says UW professor Ilene Schwartz, director of the UW's Norris and Dorothy Haring Center for Applied Research and Training in Education. The center oversees an internationally recognized educational laboratory preschool where young children with disabilities and typically developing children work side-by-side in classrooms.

Researchers there have launched a new adult training program intended to increase the number and the knowledge of early ASD service providers in Washington State. The program is designed to seed and spread expertise in the field. "We can't be everywhere, so we have to create a transportable model," says Schwartz.

The need for services has grown critical as more and more children are diagnosed with ASD — and are diagnosed at increasingly earlier ages. Most caregivers now report concerns to pediatricians by 18 months. Maybe they notice the little one spends hours staring at the ceiling, doesn't laugh or smile, and gets terribly upset by the smallest change in routine. Soon, they're trying to digest a diagnosis that can turn their world upside down. "It's like having the rug pulled out from underneath you," says Schwartz. "And then there is all the guilt: 'Why didn't we recognize this earlier?'"

The numbers are staggering. Today, one in every 110 children is diagnosed with ASD, an increase of an estimated 600 percent over a decade. The numbers grow 10 percent to 17 percent every year. Services simply aren't keeping up. "Ask any parent of a child with autism. The services aren't available, or, if they are, you're put on a waiting list — and you wait, and wait, knowing that you need services now, that everything you've read on autism says time is your enemy," says Schwartz.

Haring Center researchers are addressing the demand-and-supply problem with the rigorous new training program that targets adults working with very young children with ASD, birth to 3 years of age. It is funded through Washington State's Early Support for Infants and Toddlers program.

General training for early intervention professionals and para-professionals includes workshops, fact sheets, and online classes. Organizers have also recruited 10 early intervention specialists from every region of Washington State for advanced coaching — "experts" who will be able to inform and train other parents and providers throughout the state on best practices. "We are identifying expertise and really thinking about how to spread the wealth in a way that is sustainable," says Schwartz.

Every strategy in the program is field-tested and data-driven. That's all too rare in a time when a parent can pull up 50 million links to autism with a computer click and be quickly swamped with "fixes" for their special child: Will swimming with dolphins or riding horseback really cure their toddler? What about a gluten-free, low-lactose diet? Mineral supplements? Psychoactive drugs?

It shouldn't be up to parents to sort out what works, it should be up to researchers, says Schwartz. "I believe fiercely in the importance of using data-based decision-making. We have to be able to show that what we are doing is effective."

Vetted practices in the new training program include:

• Providing young children with ASD sufficient individualized adult attention daily
• Ensuring they have inclusive interactions with typically developing children
• Including and supporting family in interventions
• Conducting ongoing assessment of practices and adjusting interventions accordingly

The strategies draw on both current literature and a widely-adopted program Schwartz and colleagues developed called Baby DATA (Developmentally Appropriate Treatment for Autism) that places infants and toddlers with ASD in integrated playgroups with intense teacher guidance at the Haring Center. Studies show that, in a short period of time, the Baby Data children improve in social communication, cognitive development, and self-regulation skills. Follow-up data finds more than half entered regular first-grade classrooms and could complete grade-level academic demands.

The effectiveness of the early intervention surprised even Schwartz. "When I first ran Baby DATA 10 years ago, I thought, 'What difference could a year make?' It makes a huge difference. Very young children are easier to motivate, and they haven't learned bad habits yet. By the time they're 3 or 4, they've found all kinds of ways to avoid social interaction — and we have to unteach all those things."

Researchers at the Haring Center like to say that they evaluate data the "old-fashioned way: one child at a time." Every young child with ASD presents differently, and learning to individualize strategies to meet specific needs is critical to success — and challenging for new trainees. "One of the most effective strategies with autism is behavioral analysis, and analysis is the important word there. It's looking at the data, analyzing it, and asking 'Are these the changes we want to see?' That's the part we have to be able to teach people to do," says Schwartz.

Trainees learn to work with children who are all over the "spectrum" map, from high-functioning to low. While a typically developing child may need only one or two exposures to a word to learn it, some children with autism may need 50 or 100. Just teaching a toddler with autism how to point at something can take months at the Haring Center. "Most infants automatically know how to do that," says Schwartz.

Trainees aren't just working in homes and childcare settings. Interventions often happen out in the community. Haring Center staff have taught children with autism such basics as how to ride in a car, how to go to the supermarket, how to behave in Sunday school. "Wherever the problem is, that's where the intervention has to be," says Schwartz.

She describes what an intervention in a barber's shop with a young, frightened child with ASD might look like. "The first day you go, the child may just sit in a chair for ten seconds with his favorite toy and then get up and go. The second day, it may be 20 seconds. It might be a full week before we are able to do a single snip of hair," says Schwartz.

That's intense work for both the child and the adult trying to help him. But every small skill mastered moves that child one step closer to the overriding goal: to make each child with ASD an engaged and successful participant in the real world. And with the right services delivered at the right time, these children can thrive over time, says Schwartz: "Autism is a life-long disability, but we're seeing many people with it today who go on and do incredible things. It's very exciting."

Some of the first children with autism she worked with at the Haring Center are starting to enter college and consider careers now. "At one time, the idea of a child with autism attending college would have been 'crazy talk'," she says. "We've come a long way."

It's time for services to catch up. Currently, Washington State funds approximately three hours of intervention services a week for every toddler with ASD. A state task force on autism recommends a minimum of 20 hours. The National Research Council puts the target at 25 hours. The services are expensive and, unless a parent works for the military or Microsoft, there's no insurance coverage. It's all out-of-pocket. "That's a huge equity issue," notes Schwartz.

One Harvard University study found the price of raising a child with autism can add up to $3.2 million over a lifetime — if you can afford services and if you can find them. And if you can't? "Those children will need even more services later in life," says Schwartz. "It's pay now or pay later."

LINKS:

www.haringcenter.washington.edu/

FOR MORE INFORMATION:

Sandall, S. R., Ashmun, J. W., Schwartz, I. S., Davis, C. A., Williams, P., Leon-Guerrero, R., Boulware, G. L. & McBride, B. J. (2011). Differential Responses to a School-Based Programs for Young Children with ASD. Topics in Early Childhood Special Education, first published on April 7, 2011 as doi:10.1177/0271121411403166

Boulware, G. Schwartz, I.S., Sandall, S.R., & McBride, B.J., (2006). Project DATA for Toddlers: An Inclusive Approach to Very Young Children with ASD. Topics in Early Childhood Special Education, 26, 94 — 105

Schwartz, I.S., Sandall, S.R., McBride, B.J., & Boulware, G.L. (2004). Project DATA (Developmentally appropriate Treatment for Autism): An inclusive, school-based approach to educating children with autism. Topics in Early Childhood Special Education. 24, 156-168.

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