You may have heard of Temple Grandin, Ph.D., university professor, famed expert on the humane treatment of livestock, bestselling author, and one of Time magazine’s 100 most influential people in the world. At age 3, she was diagnosed with autism. In 1950, Grandin and others like her were labeled as brain damaged and likely to be institutionalized.
In the 1960s and 1970s, it was thought that autism went hand-in-hand with schizophrenia, resulting in common treatments like electric shock therapy, LSD, and behavior change techniques using pain and punishment. Many children were removed from their parents, based on the belief that poor parenting was to blame for the disorder.
Not until 1980 was autism finally categorized separately from schizophrenia in the Diagnostic and Statistical Manual of Mental Disorders (DSM). In 1994, Asperger’s syndrome was added to the DSM, expanding our knowledge of the diversity of ASDs. Only then did treatments targeting behavior begin to sprout, and a tightly controlled learning environment was thought best.
Even today, there is confusion and mystery surrounding ASDs, mystery that oftentimes clouds the urgency warranted by the “one in 110 children” statistic.
How is the current education system confronting this issue? What are the latest theories on treatment? In the middle of change and exploding numbers, the answers to these questions show that the history of autism is still being written.
In our current chapter of history, the number of children with autism in public schools is increasing by 19 percent a year. In 2005, the California Legislative Blue Ribbon Commission on Autism was formed. It released this statement: “The dramatic growth in the number of children affected by autism spectrum disorders now constitutes a public health crisis.”
According to the California Department of Education, it cost $36,000 a year to teach a student with autism in 2008. That is compared to the $8,558 it cost to teach regular education students.
In California, four percent of regular education dollars was reallocated to special education in 2000. In 2008, more than 30 percent was moved to pay for, among other things, one-on-one aides assisting children with autism in the classroom.
WHERE ARE WE NOW? HOW THE EDUCATION SYSTEM ADDRESSES AUTISM
Emergent science of autism’s causes and cures is in the news on a regular basis, so it’s no surprise that educating children with autism is another topic that is still up for discussion. As we slowly understand children with autism better, their education becomes a priority.
Since education is considered a critical element in the treatment of autism, the California school system has more than 40 separate services for students with autism, including sessions with specialists or psychologists, occupational therapy, physical therapy, and speech therapy. Parents may also choose to enroll their children in private schools.
When it comes to getting an education, each child with autism has a different story. Some students learn the majority of the time in an integrated classroom and receive select services outside the classroom when needed while others need to learn in self-contained classrooms all or most of the day.
“Inclusion in the classroom depends on the child,” said Mary Lou Evans, adjunct faculty in PLNU’s School of Education.
“It needs to be done well. That being said, of my 30 years of teaching, my inclusion years have been my favorite.”
Evans is not the only one teaching the inclusion model in her master’s classes; it’s likely the next chapter in autism history. Many teachers and administrators believe that children with autism gain great benefits by learning in an inclusive environment, so much so that the value outweighs the challenges of teaching students with autism and regular education students in the same classroom. Evans points out that children with autism can achieve important social skills while their classmates gain significant benefits. Evans says that an attitude of acceptance is important.
“I have seen students with autism make great progress in the inclusion model,” said Evans. “Role modeling from peers is just incredible.”
But not every student can be fully immersed in a classroom. It is common for students who may not be as highly functioning to be integrated during recess or lunch while some students are integrated into select socialization and academic settings over time.
It is federal law that students receive an education in the “least restrictive environment.” For public schools, that means integrating whenever it’s doable. While this provides challenges for general education teachers who don’t have special education training, teachers have options to be trained to better teach children with learning difficulties, specifically with autism.
Often schools will also provide therapists or specialists so students can have classroom time while still getting the additional help they need outside the classroom.
Parents of children with ASDs can get support services through the school system as well as at home. Organizations such as Autism Experts Empowering Families & Children Together (AEFCT) provide home therapy alongside parents through the Department of Education. AEFCT also works with teachers helping their students both inside and outside integrated classrooms. Resources like AEFCT enable children to thrive in the public school system.
When it comes to educators in the school system, being able to deal with the nuances of autism is in the best interest of everyone. By June 2011, all special education teachers in California will be required by the state to complete an autism training course in order to work with children who have the disorder – that’s more than 25,000 teachers who will be learning about the needs of students who were not allowed in mainstream classrooms mere decades ago.
PLNU is involved in the training by offering an added authorization in autism through the School of Education. With this two-semester program, current and future teachers are getting the skills they need to better understand and teach children with autism.
For schools, there are comprehensive program resources like STAR Autism Support. If an individual teacher, school, or even district is looking for support when it comes to the special education of students with autism, the STAR program conducts onsite, hands-on trainings; provides comprehensive lesson plans and teaching materials; and holds public workshops.
We’ve come a long way since Temple Grandin was a child. With myriad offerings for children with autism and the people who teach them, it is becoming more recognized that a good educational program depends on the needs of each unique child.
LIVING WITH AUTISM: THE HOPE OF INTERVENTIONS
For parents working with their school systems and support services, it can be overwhelming to sift through lists of intervention options. The good news is we have access to interventions that are evidence-based, promising, or linked to inspiring success stories.
The interventions discussed here focus primarily on early intervention, as it has proven to be the most effective way to enhance the development of children with autism. Also, the interventions that follow are only a few of countless treatments and combinations thereof. Many teachers and therapists working with children with autism in our schools use these approaches inside and outside the classroom. Several PLNU professors and alumni shared their expertise and stories so we can better understand a few of these methods.
Lauren (Berry) (03) Reynolds, who earned her bachelor’s in psychology at PLNU, is the executive director of Comprehensive Autism Services & Education, Inc. (C.A.S.E.), a Carlsbad organization that offers consultation services for families and school districts. She says that since each child with an ASD is unique, the choice of intervention depends on the individual.
“Our job is to support individuals whose lives are constant experiments,” said Reynolds.
Applied Behavioral Analysis
Kelly (Gallagher) (07) Montiel, who earned her bachelor’s in psychology from PLNU and is now a clinical supervisor at Autism Experts Empowering Families & Children Together (AEFCT), says atypical behaviors of children with autism are there for a reason.
Applied Behavioral Analysis (ABA) is an effective way to teach and reinforce appropriate behaviors, ones that don’t come naturally for children with autism. Although the ABA method is used for a wide variety of disorders, it is increasingly common in treating children with autism.
Perhaps a girl with an ASD hears the buzz of a bee outside the window, a sound most people would not notice, but the sound is unbearably aggravating for her. Inappropriate behavior resulting from her sensory overload could be interpreted as bad manners, when in fact she is trying to communicate her pain or annoyance at the sound and may not know her actions are out of place.
“We have to find out why a child is doing a maladaptive behavior and then address the function of that action,” said Montiel. “We need to give them an alternative behavior to express themselves and ignore the maladaptive one.”
Montiel says the goal of ABA is to reinforce appropriate behavior and teach children what excessive (“stimming” – repetitive behavior used to adapt to unfamiliar situations) or deficit (a lack of social skills) behaviors they are exhibiting and give them alternatives.
There are different types of ABA. Examples include Discrete Trial Training and Pivotal Response Training.
Discrete Trial Training
Reynolds says Discrete Trial Training (DTT) can be defined most simply as “teaching broken down information.” It’s one of the methods she uses frequently with her clients. For children with autism who face challenges of being overwhelmed while learning, DTT can help diminish some of those difficulties.
DTT breaks a skill into its smallest parts, teaching one at a time until the child masters it.
Landon is working on his colors. His teacher wants to know that he can identify a blue block out of a collection of different colored blocks. After a quick test, she concludes he cannot recognize it, so she takes his hand, and with his outstretched index finger, she touches the blue block.
“Good job, Landon! That is the blue one!”
When she asks him to point to the blue one again, he does not respond. But she shapes his hand with an outstretched finger again and glides his hand toward the block.
“Yes, that’s the blue one, Landon.”
Again, she asks for him to find the blue block. When he does not respond, she reaches for his hand again, but just as she does, he drops his hand on the blue block.
“Yes! Landon, you found the blue block. I’m so proud of you!”
Landon gets a high five and an Oreo, his favorite sweet.
Children can learn otherwise overwhelming or confusing tasks and behaviors when a parent or teacher concentrates on one task at a time, provides reinforcement when the child achieves the correct response, and ignores incorrect or inappropriate behaviors.
It may sound robotic, but the point of DTT is not to garner mechanical responses. Children with autism have their own preferences and elements of comfort. For someone implementing DTT, it’s important to find things that a child enjoys to make learning behaviors most natural. For example, instead of continually cueing a student to pay attention, the teacher might applaud the times he or she does pay attention and, more importantly, set up his or her tasks in a way that is engaging, like setting up the room in the order and colors the child enjoys.
Pivotal Response Training
Mary Lou Evans says that Pivotal Response Training or Pivotal Response Teaching (PRT) is a popular intervention used in the classroom, one she has used with her elementary students. Evans says the ultimate hope with PRT is that a child will master pivotal behavioral areas that will have a trickle-down effect on the growth of other skills.
Much like other ABA approaches, PRT targets behaviors, but instead of focusing on specific behaviors individually, practitioners of PRT believe by engaging a child’s pivotal areas of development (motivation, social skills, ability to respond to cues, and self-management), that child will see improvements in social, communicative, and behavioral areas.
For example, many children with autism struggle with “symbolic play,” the ability to see play as creative or imaginative. A child with autism may not think to use a shoebox as a bed for a stuffed bear. With PRT, a parent can pretend the shoebox is a bed one day and then pretend a sand bucket is the bear’s bed the next day. The idea behind PRT is that by continuing to encourage imagination, children will begin to think of creative uses for other things during play. This may translate to better problem-solving skills later in life.
Joshua Morrill (06), who received his bachelor’s in psychology with an emphasis in therapeutic and community psychology from PLNU and is currently pursuing a master’s in psychology from Azusa Pacific University, had the chance to practice Floortime. And he loves it.
“Floortime is really about building attachment and relationship development,” said Morrill. “It’s playing with the child as the leader.”
Floortime encourages two-way communication and relationship-building during play. In an iconic video in Floortime circles, 22-month-old Gary plays while his mother follows him around trying to keep his attention and Dr. Stanley Greenspan, the creator of Floortime, looks on. Gary, who has ASD, moves non-committally from toy to toy and doesn’t say much.
According to Greenspan, children with autism lack the typical connections between certain areas in the brain, but that connectivity can be strengthened. One of the ways to do that is by promoting attachment.
Gary finds a plastic crown in the collection of toys. He puts it on his mother’s head, his own, and then on Greenspan’s. When he wants the crown back, Greenspan encourages Gary to say “mine” before he can take it back. When Gary finally gets the word out, they all cheer. Greenspan calls reactions and interactions like this “circles of communication.”
Morrill says at first, circles of communication will be only reactions.
“For example, if a child is fixated on a block, you can pick up the block and raise it up to your face. Then the child is more likely to be engaged,” explained Morrill.
By prompting reaction, a circle has been opened. Floortime opens these circles by entering into the child’s space and engaging in his or her interests.
The heart of Floortime ideology can be found in Greenspan’s own words: “Meet the child where they are and move up the developmental ladder.”
When Tamara Heinz, a teacher at PLNU’s Early Childhood Learning Center, was faced with the challenge of getting three-year-old Avery to rest during naptime, she created a small paper booklet that told the story of little Avery. It followed Avery’s journey of sleepless afternoons, complete with pictures of her resting, along with her friends.
This method is called social stories, short stories that address specific situations that require behavioral change, making expectations of the child’s behavior clear by making it a part of the story.
When children with ASDs struggle with things like overstimulation or the inability to see what others are thinking, social stories help them wrap their heads around otherwise abstract concepts through visual clarity. A child could have a series of social stories to read when specific struggles arise.
By reading and seeing stories of themselves, children with ASDs gain understanding about a given situation and get more comfortable becoming a part of the narrative in their own lives.
Here is a social story about recess:
We play at recess after lunchtime.
Sometimes recess is on the playground.
A lot of the children play on the jungle gym, the slide,
or the sandbox.
It’s fun to play on the things in the playground.
Everyone should play nicely.
When the teacher rings the bell, it’s time to come back
to the classroom.
I will try to line up when I hear the bell ring.
When I line up after the bell rings, my teachers are very happy.
After I line up, I will try to stay standing in line.
Everyone will be proud of me.
Picture Exchange Communication System
Sarah (Wilson) (07) Reed uses the Picture Exchange Communication System (PECS) with her moderate/ severe special education Kindergarteners through third graders.
“[PECS] encourages students to use icons to describe what they want, which will hopefully eventually lead to speaking,” said Reed.
Many children with ASDs may not use verbal skills to communicate. The behaviors that replace verbal communication can be ineffective or even inappropriate. However, these children do have messages to convey, and it can be frustrating when they cannot find a way to articulate them.
PECS uses picture symbols to help students communicate more simply and effectively. To ask and answer questions, children use the symbols to carry on their own types of conversations.
A child may begin by using individual picture cards one at a time to identify wants and may gradually progress to lining up icons to form sentences. There are even books equipped with Velcro strips and an extensive collection of picture cards that stick to the strips.
Reed says since much of the frustration in children with ASDs comes from not being able to voice feelings, desires, or fears, PECS can help alleviate some frustration and even improve behaviors.
These approaches are just a few of the ways autism is being addressed. Treatment often involves a combination of these therapies, along with some common denominators like speech and occupational therapy. There are additional options out there, many of which have resulted in incredible success. The key to the best treatment for a child with autism is not to find the top intervention, but to find the intervention or blend of interventions that clicks best with the individual.
Children with autism possess unique and oftentimes stunning strengths. With education and intervention tailored to those strengths, there can be many more stories like Temple Grandin’s. Although there is still mystery surrounding autism, as we’ve seen, things can change.