Intervention, Alternate Treatments, Programs, Resources, and the Future for Kids with Autism
Many young children with autism and PDDNOS benefit from highly structured behavioral intervention. O. Ivor Lovaas, a psychologist from UCLA in California, is credited with using applied behavioral analysis with autistic children. “An applied behavioral analysis model is used most often,” says Parshley of The Valley Health Center. “It has a lot of research to back it up.
There can be a multidisciplinary approach in which there are a variety of professionals working individually with the child or a transdisciplinary approach, where areas of intervention, such as occupational therapy and speech therapy, cross over. We look at the motor functioning, sensory functioning and communication skills of each child and develop an individualized plan.
With a young population, you can’t separate the child from their environment. We are partners with the parents.” Adds Nalven, “Discrete trials are a form of applied behavioral analysis. It’s a one-on-one approach and is therapist driven. Food is usually used as a positive reinforcement. The therapist makes a request, such as repeating a word or making eye contact, and when the child does it, he gets a reward. Data is collected, the progress recorded and the results documented.”
Greenspan is an advocate of an approach that focuses on individual differences. “This is a developmental approach where the therapist follows the child’s lead,” says Nalven. “Whatever activity the child is doing, the therapist tries to engage that child further. This approach is useful for developing social skills. “The two schools of thought are far apart,” she explains. “Some professionals have taken a little from each. Both agree that early, intensive therapy works. But how much is intense? Twenty hours? Forty hours? At what point do you change the approach if the child is not responding?”
“The approach you take depends on the child and the number of deficits he or she has,” says Mary Elphick, a mother with two autistic children. “With my son we’ve found that applied behavioral analysis works best. It sets the stage so that he can learn. My daughter’s behaviors are milder and we’ve taken a more eclectic approach using discrete trials plus Greenspan’s sensory integration approach. These are all Band-Aids that are used on children.”
Ephick supplements the 10 to 15 hours of discrete trials her son receives in school with another 15 to 20 at home. “The more therapy they get, the better. It’s a way of life. Every behavior has a consequence, either positive or negative. The criticism of the approach is that it’s robotic. It’s not an easy way to reach a child. But you’re fighting autism, not the child.” She recruits and pays university psychology majors to work with her son. A home coordinator wrote a program to follow and trains the students before they begin. She has also tapped into the high school volunteer movement; these students work with her daughter on speech, eye contact and socialization.
Parents are also eager to try a myriad of alternative interventions. Last fall, Secretin, a hormone produced in the small intestine, gained attention. An autistic child underwent an endoscopy to determine the cause of his digestive problems. The procedure included an injection of Secretin. Within a week, the child began speaking and making eye contact. This child’s transformation from a normal toddler, then an autistic young child to a post-Secretin verbal boy was broadcast on national television. Elphick’s son received one injection of Secretin, but she hasn’t seen any change.
Fast ForWord™ is a computer program to help language-impaired children. It is based on the premise that the impairment can be caused by an inability to recognize or differentiate short-duration sounds, such as “ba” from “da.” A computer is used to stretch these sounds within words and sentences and the child is taught to recognize the problem sounds at increasing speed. Children typically work two hours a day, five days a week for four to eight weeks. Edelson notes that many autistic individuals are sensitive to sounds; they may hear beyond the normal range or certain sounds are painful. Auditory integration training, listening to processed music for ten hours, is used to reduce these sensitivities.
Visual integration training, using prism glasses, is another sensory intervention designed to normalize vision. “These non-traditional therapies are not considered mainstream therapeutic interventions,” says Parshley. “They are gaining attention and are in the data gathering stage. Parents and professionals question what strategies work best. Parents will try anything.”
“Dr. Rimland (of the Autism Research Institute) lists more than 70 therapies that have been tried,” counters Lisa Schatz, another mother with two autistic children. “There’s a whole range people can try, although very few are documented. As a parent I want these things tested as quickly as possible.” With anything new on the horizon, such as Secretin, there is an immediate following. “Parents are recommending these therapies. When you get a therapy from the Internet, there may be five practitioners, but no consistency in how the therapy is applied. There are no standards. If you’re trying one that is experimental, you have to do research. In your search to help your child, you have to balance what it will do to and for your child.”
“With alternative therapies,” says Lisa Nalven, MD, a Developmental Behavioral Pediatrician at The Valley Health Center for Child Development and Wellness, “some have merit and some don’t. When you have a child with a life-long disorder, all parents will seek ways to help their child. My concern is safety. Not all alternative therapies are entirely safe. With Secretin, the vote is still out.”
Federal law and Georgia state guidelines mandate developing a plan for transition at age two. The problem is that these kids don’t come in until 2 or 2 ½. Sometimes there is a gap in services. At age 3, the child is no longer eligible for early intervention. As with all disabilities, the earlier the intervention, the more help the child can receive.
Babies Can’t Wait
On their search, parents in Middle Georgia seek assistance from Babies Can’t Wait. Under federal law and state guidelines, this office provides early intervention services for children birth through age three who have significant developmental delays. “Usually, a parent calls with a concern,” says Gina Kuehn, BCW, Parent Educator. “A caregiver or a pediatrician may also refer a family.”
Public Schools Offer Specialized Programs
“In the past, if you needed more intervention, you would have to opt for a private school,” notes Schatz. “It costs anywhere from $30,000 to $60,000 a year for this type of care and education, not including transportation. Because of a lack of programs, by default kids were going to private schools. Now, many school districts operate schools specifically for autistic children.” At the very least, most have special programs for autistic children.
According to Luann Purcell, Assistant Superintendent Pupil Services, “The Houston County Board of Education provides individually designed programs for all students with disabilities. Due to the unique needs and differences of students diagnosed with autism, this is especially critical for the program development of these children,” she stated. “Students with the diagnosis of autism are most often served based on their current functioning level with appropriate related services.”
“The Bibb county School System provides comprehensive services to students with autism,” says Lawrence Mink, Community Affairs Director of Bibb County School System, “These services are provided in highly structured small group settings. All of the teachers who work in the area of autism have been trained through the TEACCH program of the North Carolina University System.” “The student teacher ratio is generally 1:5 with the assistance of a paraprofessional. Classes for students with autism are housed on regular campuses and the students involved are included in regular instructional programs whenever appropriate. Related services are provided, depending on individual student needs,” he added.
“Two things happened,” says Schatz. “The population grew by leaps and bounds and there are more people qualified to work with these kids. Private schools sometimes consult with public ones to help develop programs. If it works correctly, it’s a win-win situation. The kids get to stay in the district and they have social models. Most parents want this if the expertise is there.” Schatz’ son attended a private program until age 5. He is now enrolled in a regular first grade class with a full-time aide.
“Related services such as speech and social skills classes are also provided and there is consultation for the teacher, who is not a special education specialist,” says Schatz. “Academically, he’s advanced,” she said.. “His problem is communication. People have said ‘Congratulations, he’s mainstreamed.’ Yes, he functions in a regular classroom, but he’s not cured. His classmates understand that he’s different. He doesn’t always respond when they ask him a question or his comments are off-the-topic. We’ve done some peer training to help the children understand that he doesn’t always respond. At this stage, most kids are kind. At some point I’ll have to make a decision if that’s the place for him.”
“The bigger issue with mainstreaming,” contends Schatz, “is how the parents react. When my son entered kindergarten, some parents were upset that a special needs child was in the class. They assumed he was learning disabled and were afraid he would hold their children up. When they found out that he has autism spectrum disorder, they were concerned with what he might do to their children. They wanted to know if he hits or if he’ll sit and rock in the corner. I can understand their concern, but very few asked me directly and I didn’t have the opportunity to tell them.”
Once Elphick’s son was diagnosed, he was enrolled at a private school for autistic children. “It’s abysmal what the state covers. These schools are expensive.” Her daughter is in a special education pre-K in the morning and attends a regular pre-K program in the afternoon to help build socialization skills.
“Prognosis is based on severity,” says Parshley. “The earlier you can begin intervention and work with parents, the better the outcome. Parents are put through the mill. It’s extremely confusing for parents to put together a menu of treatment options.”
“We’ve come a long way in contrast to twenty years ago,” says Nevlen. “Those with autism used to be in institutions. We are able to diagnose these children earlier and begin intervention earlier. There is a limit to what we can do through education and therapy. In the future we may have the ability to treat the cause, not the symptom. Children are not static. They change dramatically. You have to be willing to re-evaluate.” “It’s really difficult,” muses Ephick. “It’s amazing what you can do when you have no choice. You just do it. Autism is a silent epidemic. We need your understanding and your tolerance.”
The Spectrum of Autism
“There is no adjective which can be used to describe every type of person with autism because there are many forms of this disorder,” says Stephen M. Edelson, Ph.D. of the Center for the Study of Autism. “For example, some individuals are anti-social, some are asocial, and others are social. Approximately half have little or no language, some repeat (or echo) words and/or phrases, and others may have normal language skills. The diagnosis of autism is given when an individual displays a number of characteristic behaviors.”
Research has shown that many people who engage in autistic behaviors have related but distinct disorders: Asperger Syndrome, Fragile X Syndrome, Landau-Kleffner Syndrome, Rett Syndrome, Williams Syndrome and Savants (See defining characteristics in Georgia Family Magazine (September 2000.)
Babies Can’t Wait – An Early Intervention Team evaluates children birth through 3 for eligibility for services. (Children already diagnosed with Pervasive Developmental Disorder (PDD) and/or Autism are automatically eligible. Babies Can’t Wait provides services that could include: assistive technology, occupational therapy, special instruction, speech and language therapy, and respite. Info: 1-888/449-0108 or 478/745-9200.
Central Georgia Chapter of Autism Society of America – Info: Liz Heslin, President 478/471-1393.
Autism Research Institute – Info: www.autism.com/ari/
Autism Society of America – Promotes lifelong access and opportunities for persons within the autism spectrum and their families through advocacy, public awareness, education and research. Info: (800) 3-AUTISM, ext. 150 or www.autism-society.org/
Center for the Study of Autism (CSA) – Provides information to parents and professionals through workshops, conferences and articles. Info: http://www.autism.com Info: (201) 599-6100.
National Alliance for Autism Research – (www.naar.org)
Autism Resources – (www.autism-info.com)
Families for the Early Treatment of Autism – (www.feat.org)#