An evolving response to autism spectrum disorder
In 2002, the Center for Disease Control and Prevention identified 1 in 150 children with an autism spectrum disorder (ASD). By 2008, that number had risen to 1 in 88. The most recent estimates are 1 in 50. Orange County is in step with the trend. In 2000, Orange County was tracking with the state at about 1 in 400 children diagnosed with ASD; by 2010, it was about 1 in 60. That means that, today, one child in every average school bus has been diagnosed on the autism spectrum.
It’s a reality that touches each of our lives, not just because by this point we all seem to know a family facing autism, but also because this is a growing segment of our community. Our futures are intertwined.
For parents whose children are diagnosed with autism spectrum disorder, the numbers call forth a huge range of emotion: from confusion over what the diagnosis means, to concern about what their next steps should be, to fear about how the world will perceive their child, all accompanied by unanswerable questions about what the future will hold. As a spectrum disorder, autism can affect children in a multitude of ways and to various degrees. Some have social or behavioral difficulties, some struggle to communicate – mildly or severely. Along with developmental struggles, there are a slew of physical and medical issues that can accompany an autism diagnosis.
There is little known about the cause (or causes) of ASD, and with urgency swelling as the numbers skyrocket, researchers, physicians and nutritionists are all scrambling to provide viable and effective treatment options. But no matter which way you cut it, parents are the ones taking the brunt of this truly societal change. They’re the ones asking “How did this happen?”, “What can be done?” and “What will the future hold for my child?”
Glen Warren, a middle school teacher at McPherson Magnet School in Orange and one of four educators
chosen to represent Orange County in 2013 as the state candidate for Teacher of the Year in California, is one of those parents. He and his wife are parents to three autistic children. “We were on it very early, seeing certain milestones that they weren’t able to hit,” says Mr. Warren. For the Warrens, like many parents, there was no shortage of confusion about the diagnosis.
“My wife initially was deeply concerned, understandably, but I was just wondering what it meant,” says Mr. Warren. “I didn’t understand what the whole thing was. They started explaining to me all these things that my child would not be able to do, so I just said, you know, I’m not interested in your list of what they can’t do. What is it they can do?”
On forums all over the internet there are parents reaching out to each other with similar questions – and for help, encouragement and answers. What can our children do? How early are we addressing the core of the disorder?
While much is known now about how children with autism may function on a daily basis, a good majority of the data that is being collected depends on how early it is recognized. The earlier that doctors are able to see the disorder, the faster parents can build an individual program to serve their child. A lot of research is pointing to the malleability of the brain in the earliest years, when therapies and interventions can make an enormous positive difference that last a lifetime. Even so, depending on where the child hits on the spectrum, a good part of the “known” information is conveyed to parents in brutal bullet points.
Autism can be associated with intellectual disability, difficulties in motor coordination, repetitive behaviors, frustration. ASD people often focus on an item or task single-mindedly, they tend to be very literal. They can be uncomfortably honest. Lack of empathy. Lack of social skills. And this was exactly what Mr. Warren and his wife found. When one doctor began telling the Warrens all the typical qualities of people with ASD, it occurred to them that it was a pretty familiar story. “It started to sink in,” says Mr. Warren. “He’d just described most of my family and half the people in Princeton, New Jersey where I grew up. You know, you’ve got the professors who walk across the street with their glasses cockeyed and their buttons not lined up appropriately, and these are the smartest, most brilliant people in the country, who barely have any social skills, and Lord knows, we love them for it.”
With the media calling attention to the “alarming” number of children on the spectrum, parents understandably turn to the medical community, and to their children’s schools for help. But what assistance is out there, and what are we actually trying to help these children with? That is the question that seems to be rising in prominence. Because each child is unique, each case is therefore unique; medicine doesn’t always offer broadly effective answers for conditions that have very individualized expressions, as is the case with ASD.
Vera Bernard-Opitz, Ph.D., has worked with autistic children for years, working directly with parents, supervising their teams through tele-consultation, focusing on autism-specific behavior therapy and the development of social communication in the community. In 1992, while living in Singapore, she founded Autism News Singapore, a publication that was a collaborative effort to share applied research, innovative ideas, and family stories with parents and professionals. Since moving to Orange County, she has published 19 editions of Autism News Orange County (ANOC), focusing on topics ranging from early assessment and intervention, to treatment methods, behavior challenges and recent technology.
“Parents will always be the ‘specialists’ of their child,” Ms. Bernard-Opitz says, “but effective autism intervention should be a team approach. Parents should seek help from experienced professionals, meet other parents, and most importantly, ‘recharge their batteries’, and have time for life outside of autism.”
Often, parents’ number one concern lies in that exactly: life outside of autism. Mr. Warren reflects the number one topic on online discussion boards when he says that his greatest fear for his children lies “in the rest of the world – the lens by which others see.” In order to transform that lens, Mr. Warren, Dr. Bernard-Opitz and so many others are focusing not on the “problem” that is autism in our community, but attempting to reach out to discover solutions and opportunities to foster advantages for children on the spectrum.
Fourteen years ago, the Warrens decided that they wanted their child to have a friend. “Of all the indicators of success, having a friend is one of the biggest,” he says. “Not academics. In life, you’re lucky to have one or two really good friends – not the 100 or so Facebook friends, but really good lifelong friends. That was our goal for our kids.” So Mr. and Mrs. Warren founded Friendship Builders, a community-based, twenty-first century relationship-building program designed for special needs kids. Each Friendship Builders “program” lasts one year, with weekly events, outings or meet-ups scheduled that get kids interacting with their peer group in real world situations rather than a classroom or therapy clinic. With the goal of providing opportunities for successful and fulfilling peer relationships, Friendship Builders teaches special needs kids contextualized social skills according to their age group (from elementary to high school). Lessons apply to a multitude of scenarios, from the playground to parties to eating out, to online interactions and even family relationship dynamics. As far as Mr. Warren knows, it’s the only program of its kind.
Educators are also evolving their approach to teaching and supporting ASD children. As more and more parents turn to their school districts for assistance, the districts are turning to the Orange County Department of Education. OCDE’s stated goal is to assist all students to be as independent and successful as possible within the larger community. But what about the schools themselves? What can parents do when schools don’t have the resources to foster the opportunities that parents are looking for?
Analee Kredel, Program Specialist for the Orange County Department of Education’s Special Education Department, says that they are the most proud of their SUCCESS program. Twenty years ago, the districts within Orange County pooled their combined resources to get training. Today, the district functions as the coordinator for training in and out of the classroom to be able to reach out to every side of Orange County and do a better job for students.
Looking for independence through “data driven individual programs, with ongoing collaboration between parents, support staff, and support agencies,” Ms. Kredel says that, above all, the Special Education Department serves those students that the schools in Orange County might not have the resources to help. Ms. Kredel and her team are actively reaching outside Orange County to find help for educators. “We provide resources, but we also run programs. SUCCESS allowed us to bring in experts from all over the country.”
Those experts offer a huge service to the training professionals, psychologists, and especially the general education teachers in Orange County by giving insight into new procedures and interventions that can be immensely helpful. And the programs have helped immensely – from teachers who see their students progressing through general education standards, to allowing students more time to discover the ease in learning when looked through the lens of a more focused passion. (And focused passion is one thing ASD patients tend to possess in abundance.) Mr. Warren’s children, now 16, 13, and 9 are doing exactly that – riding their passions to excel in school and in life; they’ve even made the honor roll.
“We’re drilling into the realities faced by a population that we’ve always had – it’s just getting bigger,” says Mr. Warren. As this population grows, how will our community meet it? Many parents are rightly looking closely at addressing external influencing factors like nutrition and environmental factors (both in-home and out) that can support the health of their children and themselves; they’re getting help from therapists and professionals; they’re learning how to teach and support their children themselves, and they’re pressuring leaders to do more and better. And they are challenging themselves to think differently about who their children are and what they have to offer – just like good parents do.
“I understand that it’s a struggle, and I understand that it’s hard,” says Mr. Warren, “but we have to ask ourselves, is this only a problem that kids have? Does it stop there? Or is it also a gift to our society? You know, many of these kids can focus in ways you and I never could. They can change the world. We should always be asking ourselves: What is that uniqueness they have? Yes, they need our help, but we need to keep an open ear to how they can help us.”
As the special needs community in Orange County has grown, so have support services, both public and private. Here are a handful of organizations offering help and hope to children and families.
Speech and Language Development Center, Buena Park: Out of a small house in 1955 two speech therapists, Aleen Agranowitz and Gladys Gleason, began working with three children who had speech, language, learning and behavior problems. Because many children needed what Aleen and Gladys offered, the clinic – at that time called Lakewood Speech Clinic – grew rapidly. Eventually, Aleen, Gladys and their growing staff were serving children who had multiple challenges, and Lakewood Speech Clinic became the Speech and Language Development Center. Today this nonprofit organization serves 340 students with a variety of challenges, offering speech and language therapy, occupational and physical therapies, adapted physical education, counseling, vocational services and more. Children range in age from 3 months to 21 years and are taught in a setting of warmth and friendliness. The early goal of helping three language-handicapped children reach their potential has expanded to many hundreds – without losing the importance of one individual. Connect with SLDC by visiting sldc.net or calling (714) 821-3620.
Orange County Children’s Therapeutic Arts Center, Santa Ana: The Orange Children’s Therapeutic ARTS Center (OCCTAC) was founded by Dr. Ana Jimenez-Hami in the year of 2000 in honor of her parents. Dr. Jimenez-Hami’s love for children with special needs and her parents’ humanitarian work gave her the inspiration to start this unique community organization that focuses on the arts as a vehicle to empower at-risk youth and children with special needs in Orange County.
Since opening its doors the OC Therapeutic Arts Center has helped transform the lives through the arts. Drawing classes help children and youth reinforce their motor skills; music classes teach children about rhythm, rhyming, and phonological awareness; dance classes help youth develop coordination, motor control and an awareness of space in a disciplined environment. All of these classes help special needs youth gain pride and self-confidence through expression! For schedules and more information on classes that OCCTAC provides for all families and youth, take a tour of their center or visit OCCTAC.org.
The Glennwood Foundation: The Glennwood Foundation, Inc., is a local non-profit that was founded in 2003 to fund and support “The Lighthouse Group,” a faith-based social group that serves adults with special needs. Our participants have various developmental and physical disabilities, and are aged 18-45, with a goal of providing a safe, fun place for adults with disabilities to connect with friends and be themselves Glennwood Housing Foundation, Inc. spun off of the original Glennwood Foundation, Inc., after founder Randy Larson realized that housing was the next critical step. After years of searching and fighting for the right location, the Glennwood Housing Foundation opened the Glennwood House of Laguna Beach in July/August 2013, which now houses 50 adults with special needs. The residents experience the independence they deserve in a safe, inclusive community. Connect with the Lighthouse Group online at thelighthousegroup.org. M