By Alanna Berman
The Importance of Early Intervention
According to recent findings, millions of children in the U.S. have social-emotional, cognitive and developmental disorders. The prevalence of autism spectrum disorders, in particular, has grown to one in every 91 American children, according to Autism Speaks, the nation’s largest autism science and advocacy organization.
Left unidentified and untreated, these disorders can interfere with children’s ability to succeed in school and with their ability to build successful relationships as they age. Although pediatricians and other groups, including the National Institutes of Health, have called for broad-spectrum screening for these disorders in children as young as 6 months, no real progress has been made, leaving most of the work in the hands of educators and parents. A recent study by the National Institute on Mental Health revealed that no one group is consistently screening kids, be it teachers or pediatricians.
“The earlier we catch [these problems], the better we are at fixing them, the less expensive it will be and the more successful the kids will be,” says San Diego psychologist Bonny Forrest, who recently launched her own screening initiative, Project SKIP (Screening Kids for Intervention and Prevention), which takes the process into classrooms. “These kids are falling through the cracks. Right now, 30 percent of kids who have a mental health issue don’t get picked up [because they aren’t screened] and don’t get treated.”
Dr. Forrest and other mental health professionals like her agree that the problem is not a lack of appropriate treatment, but really a lack of across-the-board screening consistently and as early as possible. Involving schools in the screening process is one of her passions and the reason she founded Project SKIP nearly 10 years ago after seeing an increasing number of children, as old as 16, who had just received a diagnosis for a mental or behavioral disorder.
“As a mental health professional who spent all this time in research and looking into effective treatment, it really breaks my heart to see kids who are 15 or 16 who have gone undetected, whose lives are on much different courses now than they would have been if we had been able to intervene earlier, or listened to the signs as the children were growing up,” she says. “We screen for vision and dental, and we need to be doing the same thing for mental health and developmental disabilities at least twice a year.”
She says a recent government survey found that one in seven children has a developmental disability, yet only about 50 percent of those children are identified before they enter school. The need for earlier screening is obvious, says Dr. Forrest, when one considers the long-term costs associated with treatment once these problems have progressed.
In fact, Autism Speaks reports that it costs “$3 million to care for an individual with autism over their lifetime due to their special needs… [This adds up to a] $35 billion cost to society annually.”
Early screening, intervention and treatment could lessen this cost and ease the burden on the education system, already tapped for resources. It’s true in San Diego, too, where Aimee Sage works as a behavior support resources administrator for the San Diego Unified School District.
“Because [these problems can be] so individualized, that is the biggest challenge for teachers, whether they are special education teachers, general teachers or administrators,” says Sage, who advises the district’s schools how to accommodate special needs students. “[Our work in the special education department is] really about how to meet the needs of all students, yet they differ so much.”
While the public school system in San Diego does universally assess students for the GATE (Gifted And Talented Education) program, no universal screening exists to identify those with mental or developmental disabilities. Sage says that, among other reasons, the screening process would be “too vast” to be easily implemented.
“There are 13 ways students could qualify for special education, or 13 primary disabilities [that we serve], so we wouldn’t universally screen for [all of them],” she says.
It was the inability of schools to implement such a screening process that prompted Dr. Forrest to create her Project SKIP assessment in the first place.
According to Forrest, San Diego’s public schools do a decent job at providing some intervention for kids who have already been diagnosed, but since the schools are tapped for resources, they can’t always screen and detect other kids who may be struggling, especially if those kids are higher functioning and therefore more difficult to detect.
“Unless you are doing screening,” Dr. Forrest says, “these kids are hard to pick up.”
Though Dr. Forrest’s goal is to eventually train and send Project SKIP representatives into the classroom to screen every child, the assessment is done entirely online at this stage. At any time and voluntarily, parents and teachers can both complete the screener about a child in question, and the parents receive feedback on their child’s behavior in relation to other children the same age, as well as a short assessment by Dr. Forrest herself. It takes into account a variety of social-emotional and cognitive disorders, including autism. The 20-minute questionnaire is $20 and consists of two industry gold-standard screening instruments.
“The Social Communication Questionnaire (SCQ) is a gold-standard assessment for autism that looks at: does the child respond to names, are they speaking in complete sentences, are they having to and fro conversations, are they showing enjoyment,” Dr. Forrest says. “All of those things are hallmarks [of autism spectrum disorder].”
“[The second part of the screening is the] Behavior and Emotional Screening System (BESS), which looks at things like attention, doing what they are supposed to be doing, do they complete tasks, do they seem sad, mad — those sorts of general questions.”
Additionally, Dr. Forrest has included about 10 questions she has developed over her years working in clinical practice.
“The results of the survey will say ‘at risk for a development delay or mental health issue,’ ‘typically developing,’ or ‘at risk’,” Dr. Forrest says.
Once Dr. Forrest makes an assessment, she usually refers parents to a specialist for intervention. While she used to run her own practice and still sees some of her patients, her focus is screening and helping kids sooner rather than later. Currently, she is working on introducing her Project SKIP assessment to schools in San Diego and across the country (she says she’s also been working on some sort of collaboration with the area’s Jewish preschools).
“There are enough stories out there to show that early intervention works,” she says. “If we catch these issues earlier, it’s a better program. The flip side of that is that the schools don’t have enough money to provide the services, so I personally think that we need some creative, innovative solutions. The nice thing about [Project SKIP] is that for a very small amount of money, [educators] can go in and screen everybody, pick those kids out earlier and do more with less money.”
While there is no real “cure” for autism, psychiatrists like Solana Beach-based Dr. Joshua Feder work to help children cope with their symptoms. Treatment differs depending on the child and the advancement of his or her problems, but one of the most popular intervention approaches for autism or other social-emotional disorders, and one that Dr. Feder himself uses with his patients, is the DIR (Developmental, Individual Difference, Relationship-based)/Floortime model, a framework that helps build healthy foundations for social, emotional and intellectual capacities rather than focusing on skills and isolated behaviors.
“You can teach any behavior, but DIR/Floortime is all about developing the core ability to relate,” Dr. Feder says. “It’s not just training [a patient] to see a word and read the word, but to adapt to other situations.”
As a child and family psychiatrist, Dr. Feder focuses more on treatment and intervention, not detection. By the time patients arrive at his office, he says, they have already seen multiple doctors and been given a diagnosis. In addition to his practice, he runs a Web site where parents and caregivers can gather more information about effective treatment, ask questions and speak to other caregivers.
He’s also in agreement with Dr. Forrest when it comes to screening (though they’ve never worked together in the past). According to Dr. Feder, research points to early screening as the key to effective intervention. As the co-chair of the South County Autism Treatment Group, he finds that parents of children affected by the disease wish that there had been a mandatory screening system in place.
“Most of us wished we had more clarity on mandatory screenings for developmental disorders, because there is a lot of confusion,” says Dr. Feder, who adds that the long-term care costs are larger than those associated with addressing the problem early.
“What we really need are pediatricians and other primary care people doing the screenings as early as possible, so if we catch these types of difficulties we can try to do something about it,” Dr. Feder says. “Anyone who has ever been in the position to have a child who could have done better had they been diagnosed earlier would agree.”
With better screening tools in place, Dr. Feder those in the industry can more easily identify some at-risk children, but despite improved tools, many children still go undetected.
“We’ve got higher thresholds for people getting help, where kids who used to be identified are now not because they are “higher functioning” and don’t fall below the threshold needed to get help,” he says. “The problem with this is that there may be more problems looming.”
For now, Drs. Feder and Forrest will continue to screen, intervene and assist those affected by these disorders, and continue their efforts to implement an across-the-board screening measure in schools.
For more information on Project SKIP
For more information on Dr. Feder and his practice, visit www.circlestretch.com.
If you would like to learn more about Autism Spectrum Disorder, visit www.autismspeaks.org.
Orthodox Mental Health Needs Not Being Met
Though the stigma often associated with social-emotional or cognitive disorders has lessened thanks to greater awareness and understanding among the general population, some say it still remains, specifically among Orthodox Jews.
A 2009 survey of more than 100 Orthodox mental health professionals revealed that despite significant improvements in the past 25 years, Orthodox Jews continue to be underserved in the psychology department. The study, called “Psychological Disorder and Stigma: A 25-Year Follow-up Study in the Orthodox Jewish Community,” is the follow up to another study, conducted in 1984 by Dr. Shalom Feinberg, clinical associate professor of psychiatry at Yeshiva University’s Albert Einstein College of Medicine, and his wife Dr. Karyn Feinberg, school psychologist at Yeshiva Har Torah in Queens.
The survey asked participants to name the most prevalent psychological disorders within the Orthodox community, how well each segment of the community is being served and how much stigma is still associated with mental health conditions. The 25-year gap showed some improvement since the original survey was posited but showed an increse in the number of those whose needs were being adequately met in the Orthodox community to just 40 percent (from 10 percent in 1984).
“The Jewish community has such drive — and value associated with drive — and intellectual curiosity, and to see that in the vein of mental health is hard to accept,” psychologist Bonny Forrest says of the study. “Because of the need for success and the value of intellectual curiosity, [many in this community wonder] what it means if you have a developmental disability.”
In terms of education, and autism in particular, a diagnosis can be difficult for everyone involved, regardless of religion. However, Dr. Forrest points to a number of studies on and personal experience within the Orthodox population to support her belief that a stigma still remains in this group.
“People are much more inclined to talk to a rabbi than a psychologist,” Dr. Bonny Forrest says. “People are much more inclined to turn to religiosity or spirituality than they are to see a mental health professional.
So, what can be done to lessen the stigma?
“We need to make screening [for these issues] commonplace so that we can finally remove the stigma and start thinking about mental health, and especially in a different way,” Dr. Forrest says.