Anne Jones had a 5-year-old son, a teaching credential and a master’s degree in education by the time her second child, a girl, was born. But neither her maternal wisdom nor her professional experience prepared her for the journey ahead.

From the beginning, the differences in her children’s development were glaring. Her son had been precocious and quick. Her daughter struggled with language and had trouble making eye contact. A pediatrician raised the possibility of autism.

Shortly after the child’s fourth birthday, Jones, director of teacher education at UCR, took her daughter to UCLA’s Neuropsychiatric Institute. A neurospsychologist confirmed what the pediatrician had suspected: autism spectrum disorder.

With that diagnosis, Jones officially entered the realm of the fastest-growing serious developmental disability in the country. Autism is more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined.

Like parents across the country, Jones would advocate for her child’s needs, navigate the complicated structures that would provide therapies for her daughter and encounter teachers who were ill-equipped to help her child learn.

Between 1987 and 2002, California’s autism caseload increased by 634 percent, according to the Department of Developmental Services. The number of students with autism enrolled in grades K-12 in California schools has increased more than 1,000 percent during the past 22 years, jumping 183 percent between 2001 and 2007.

Educators and social service providers are struggling to keep up with the unprecedented explosion to meet the demand for programs that can include a combination of intensive behavioral therapy, speech and language therapy and special education services.

According to the California Legislative Blue Ribbon Commission on Autism, some local education agencies indicate that it costs at least $30,000 a year to educate a pupil with autism in a public school program and $40,000 a year to send a pupil to a nonpublic school program. This compares with approximately $8,000 for the average student, according to a 2007 report compiled by researchers from Stanford University.

Jones said her daughter attended school in a district flush with money that was able to fully fund special education programs. She said she also was fortunate that her child’s preschool teacher was a licensed speech pathologist.

“We got very lucky,” she said. “I don’t know that I would have known to advocate for the services we received. It’s incomprehensible to me what the average parent is dealing with. Even if you’re highly intelligent and educated, if you’re outside of the realm of education, you don’t know what to ask for.”

UCR is seeking to fill that void.

At other UC campuses and at universities across the country, scientists are devoting countless hours to finding the causes of autism in hopes of helping future children affected by the disorder. Now, UCR is poised to make a unique contribution, one that is geared toward the present.

UCR is opening a resource center designed to help families connect with educational and other services. Founded by Jan Blacher, a professor in the university’s Graduate School of Education and a nationally recognized autism expert, SEARCH (Support, Education, Advocacy, Resources, Community and Hope) is the first center in the UC system to focus on helping families navigate the maze of autism issues. The center will offer services in English and Spanish, and has received an endorsement from the Latino Caucus of the California State Legislature and State Superintendent of Instruction Jack O’Connell.

“It can be an incredibly overwhelming task and it doesn’t end because in most of these developmental disabilities, the needs of the child change over their life cycle,” said Steven Bossert, dean of UCR’s Graduate School of Education, speaking about the challenges parents face in finding services for their autistic children. “Some service providers drop out at different ages.”

In California, the state’s Early Start Program provides intervention and other services to children with autism who are younger than age 3. The California Department of Developmental Services contracts with 21 nonprofit regional centers to provide those services.

But once a child turns 3, school districts become responsible for educating children with autism. And, experts say, there are often delays in interventions and therapies.

Faced with an overwhelming amount of information and numerous treatment options, families are unsure where to turn. Many of the therapies are evidence-based interventions but some families swear by less traditional, more controversial therapies such as special diets.

Complicating matters is that much about autism remains a mystery and that there are several different kinds of autism. Some experts believe that better diagnosis or a broadening of the diagnostic spectrum accounts for the surge in the population. But a study by UC Davis’ MIND Institute discounted those theories, finding that the increased numbers truly represent an upswing.

“There’s a small segment of the population that believes there is no increased incidence in autism at all,” Blacher said. “To me, the argument is moot because as soon as you advertise or write about something like SEARCH, it’s clear there are more kids that need services right now than we probably have resources for.”

And because of the growing numbers, public educators are guaranteed they will have children with autism in their classrooms, Blacher said. UCR is also trying to help in that arena.

Over the last couple of years, Blacher reports many calls and inquiries from teachers and school districts who wanted to know if UCR had a master’s degree in autism. So she convinced the university to put together a new master’s program that will allow current teachers to get a master’s degree in education with an emphasis in autism. Blacher said the university is hoping to have its first students a year from now.

University Extension is also developing a certificate in autism aimed at serving people who might become teachers, said Sharon Duffy, acting dean of UCR Extension and associate dean of the Graduate School of Education.

“It’s such a significant need,” Duffy said. “The M.E.D. and the certificate in autism at extension are both in response to lots of calls and inquiries from teachers and school districts asking us to provide more support to educators.”

“Everyone is aware of the need to serve this group. Because our program is relatively small, we are able to infuse things maybe more quickly than a larger program,” she said. “I think that we probably would say that today we are not doing enough and that’s why we’re looking at these new programs and new ways of getting research-based knowledge and practices to all the types of educators that need to know about autism, which includes administrators.”

An autism diagnosis involves deficits in three core areas: social interaction, use of language, and behavior and interests.

How the disorder manifests itself can depend on where a child falls on the spectrum. Some children are withdrawn, have few language skills and self-stimulate by flapping their hands or flicking their fingers near their eyes, a practice known as “stimming.” Others have strong language skills, especially when it comes to a particular area of interest.

Scientists have yet to determine the exact cause of autism spectrum disorders and suspect there might be many causes. Children with autism have different brain shapes and structures than those who do not have autism, according to the Autism Society of America. The Centers for Disease Control and Prevention cites genetic predisposition and environmental factors as likely causes.

Boys are four times more likely to be diagnosed with autism spectrum disorders than girls. Symptoms can emerge before 18 months or earlier, but most children are not diagnosed until they are between the ages of 3 and 4, according to the Centers for Disease Control.

There is no cure.

“Autism is an issue that has come front and center and is now considered a public health crisis,” said Barbara Firestone, president, CEO and founder of the Help Group, the nation’s largest nonprofit of its kind serving children with autism and other related special needs. She is also vice chair of the California Legislative Blue Ribbon Commission on Autism, created in 2005 by a resolution co-sponsored by the Help Group, written by Senate President Pro Tem Don Perata and supported by Assembly Speaker Fabian Nuñez.

One in 150 children will be identified as being on the autism spectrum and a child is diagnosed with autism every 20 minutes, said Firestone, the author of a newly released book called “Autism Heroes: Portraits of Families Meeting the Challenge.”

“Those numbers continue to escalate and as a state we are looking at how best to address and how best to serve individuals living with autism throughout their life span and their families,” Firestone said. “California is at the forefront in many ways with its system of care. Yet there are many challenges and many gaps.”

The commission established three task forces: early identification and intervention education and professional development, and transitional services and support.

One of the big issues with autism spectrum disorder is early diagnosis. Therapies are most beneficial when children are young, said Firestone, who chaired the early identification and intervention task force.

“Many people do not receive a timely diagnosis and families do not have access to appropriate intervention,” Firestone said. “We know that the medical system is overwhelmed and underfunded, and ill-prepared to deal with the enormity of this challenge. Simultaneously, denial is a powerful defense mechanism for parents. It can contain the anxiety that parents feel when they first suspect that their child is not developing normally. Their denial is reinforced when they seek guidance from professionals who more often than not tell them on their first visit or two, ‘Don’t worry. Your child will grow out of it.’ This interplay of denial and ‘don’t worry’ can give false hope and significantly delay early identification and intervention.”

There is hope, however.

Taft Community College, located in Kern County, California, has a Transition to Independent Living Program that began 12 years ago with funding from Kern Regional Center. It is, according to the Blue Ribbon Commission, the only city college with a program on campus geared toward people with autism.

The program is geared toward young adults who want a postsecondary educational experience that teaches them to live on their own. Participants include adults with autism and cerebral palsy. But, there is a four-year waiting list.

When the program began in 1995, none of the participants were diagnosed with autism. Now, one-third of the students involved have been diagnosed with autism, said Jeff Ross, Taft’s director of student support services.

A number of community colleges have expressed interest in starting their own versions and Ross said he and others are hoping to start at least six more programs in the state in the next couple of years.

UCLA recently opened a similar program called Pathways, Ross said. The Help Group’s Steps to Independence Program, which will serve young adults on the autism spectrum who are transitioning out of the school system and need additional support and training, will be available soon.

“There is such a tremendous need for developing and expanding programs that can best serve these young people,” Firestone said. She described the group as a “tsunami” of children who will need independent or semi-independent training and housing opportunities.

Work is being done elsewhere at the statewide level. In response to the crisis, Assembly Bill 2513 created the California Department of Education’s Superintendent’s Autism Advisory Committee to develop recommendations on ways that public and private schools can better serve children with autism.

Under the Individuals with Disabilities Education Act (IDEA), children with autism and other special needs must have an individualized education program (IEP) that requires input from teachers, parents and others about an appropriate education plan for the child. Educators and parents sometimes disagree. Some parents hire lawyers or advocates to ensure they get the best shot at programs and therapies they believe are in the best interest of their child.

“Not everyone needs a lawyer,” said Adriana Araiza, 36, whose son was diagnosed with an autism spectrum disorder. “If you’re very smart and you have time on your hands and you speak English very well, then you can go in there and defend yourself and get what you need for your children.”

She and her husband hired a lawyer to advocate for services for their son.

Araiza said she knows school administrators have good hearts and want to help children. But, she says, it’s vital that the children get the services they need when they are young and most receptive to improvement.

“I want him to be just like any other student,” Araiza said. “(I want) for him to be able to go to kindergarten. I think the school district is going to help me do that. I think they are doing the best they can with the resources they have and, hopefully, they’ll work at getting more resources so they can get better programs.”

UCR alumnus Jack Clarke Jr. is an attorney with Best, Best & Krieger in Riverside. He has expertise in special education law and represents school districts when parents and schools cannot agree on the “appropriate” education for a child with special needs. Districts have done an honorable job of increasing the availability of programs for children with autism and for training teachers and staff, he said.

“There is almost an assumption by some parents that whatever is happening in the public school system is not going to be sufficient,” Clarke said. “That is very unfortunate because it doesn’t lend to an atmosphere, to a real discussion about the needs of a child.”

Clarke said that only an “exceedingly small number” of disagreements go as far as the courts.

“So that means that on the whole, people are talking, programs are being created and, for the most part, disputes are being resolved informally,” he said. “That doesn’t mean we don’t have work to do.”

Some parents insist that their child be placed in a general education classroom despite educators’ advice, said Kathie Yugo, autism program specialist with the Corona-Norco Unified School District.

And that is not always successful, Yugo said.

“Sometimes it just doesn’t work because the child is not able to access the curriculum. His needs are so great, he can’t. The parents are saying as part of this team, I want to try this, I want him to be around typical peers,” she said. “In some cases, the child can go into general education classrooms for subjects they can tackle, such as art or science.”

Jones, UCR’s director of teacher education, said school districts are in a difficult position, faced with a high demand for services and a finite amount of money.

As an educator, she said she understands the problem.

“Teachers are called upon to do the impossible. I empathize and I understand that there are parameters they need to work with. At the same time, I need to passionately advocate for my child.”

Jones recalled one of her daughter’s teachers looking at her and saying, “This is not my fault. Nobody said I’d have a kid like this in my class.”

She was stunned.

“(My daughter) is very low maintenance so if this is overwhelming to a classroom teacher, it gives me pause to really think about what kind of experiences other kids are having,” she said.

Jones says her daughter’s teachers are reluctant to accept the fact that a child can have special needs and be gifted. Jones says her daughter is an incredible artist and has been since the day she picked up a crayon.

In Los Angeles Unified School district, the second largest in the country, there are only two autism specialists. The district serves about 730,000 students, 85,000 of whom have special needs. More than 7,000 students have been diagnosed with autism.

Parents have moved into California from out of state having done research about the services offered here, said Debbie Moss, one of the autism specialists for the Los Angeles Unified School District.

“I think in some respects we’re so behind,” Moss said. “We have to do a better job of training our teachers and preparing them.”

Teachers who work with students with autism need more than what they learn in books, Moss said. They need hands-on experience working with the children.

The master’s degree and autism certificate programs being offered by UCR Extension and a certificate program is being offered at California State University, Los Angeles, she said.

“We’re finally getting the attention we need, but even still it’s not enough,” Moss said. “We’re doing a balancing act as far as putting money into what causes it, which is critical, but we also have to put money into what we do with the students we have now.”

But despite the funding issues, the complexities, the challenges and the gaps in the systems of care, there is a lot to feel good about, Firestone said.

“We’re all searching for the treatments and interventions that hold the most promise for kids, and the good news is that there are evidence-based early intervention practices that can result in significant positive outcomes for many young children with autism,” she said. “There has never been a more promising time in the history of autism. We’re well out of the dark ages. The stigma is being lifted.”



The SEARCH Starts Here
A new center at UCR aims to help parents get the help they need.

Jan Blacher saw a void and did something about it.

A professor in the Graduate School of Education and a nationally recognized expert in families and disabilities, Blacher envisioned a way for UCR to make a unique contribution to autism, a burgeoning public health crisis.

“While other campuses of the UC system are focusing on cause and cure, nobody was focusing on education issues from the parents’ perspective,” Blacher said. “That’s where I saw UCR stepping up to the plate and filling the need.”

Blacher founded a resource center called SEARCH (Support, Education, Advocacy, Resources, Community and Hope) to help families of children with autism, particularly low-income and Spanish-speaking families who have been underserved.

The center will work with school districts, regional centers, the Riverside County Office of Education, and other agencies and institutions to help families find appropriate services.

SEARCH also will educate teachers. Given that 1 out of 150 children will be diagnosed with an autism spectrum disorder, it’s no longer a matter of if educators will have a student with autism, but when, Blacher said.

“Any public school teacher can pretty much expect to see one of these kids,” she said. “It’s clear that a lot of educators are lacking the skills they need.”

Blacher said she hopes SEARCH will work with the proposed UCR medical school to provide information to physicians in training and approach the issue in a multifaceted way. She would like UCR to be identified as the information source for autism in the Inland Empire. She said she knows there is money out there to support the effort.

Steven Bossert, dean of the Graduate School of Education, said there is a clear need for the center, particularly because the populations of Riverside and San Bernardino counties are booming.

“We are in contact with the regional centers. We’ll work in tandem. Each of us has something to bring to the table. We’ll also work directly with families to provide both advice and services,” Bossert said.

“I think most importantly, especially for the Inland Empire, it’s just nice for them to have a center to help them navigate the world of autism,” said Erica Howell, one of two fellows from the Doug Flutie Jr. Foundation for Autism who will work with Blacher. The other fellow is Araksia Kaladjian.

Many families of children with autism are overwhelmed at the number of service agencies they have to deal with. Bossert said one parent commented that, as his child moved from elementary to middle school, there were more than 40 service agencies in the region he had to interact with.

“Although many of the parents that are contacting us are getting services, they’re very confused,” Blacher said. “It’s not their job to know the literature, or to have a life-span perspective on autism.”

One clinician working with children with autism and their families said he views the center as a type of clearinghouse.

“Dr. Blacher and UCR have my unwavering support in this effort because I believe that information is what we need the most,” said Dr. Jose Fuentes, a neuropsychologist with a private practice in Loma Linda. “There has to be a central voice that helps inform families of those services.”

Find out more about the SEARCH center at searchcenter.ucr.edu.