Perspective: Down By the River

by Meredith Letso

Meridith Letso, 16, is a junior at Newtown High School in Newtown, CT. She wrote this essay for her Advanced Placement English class and hopes to be an author one day. She is the daughter of Suzanne Letso, MA, a member of OAR’s Scientific Council and the co-founder and CEO of the Connecticut Center for Child Development.

Five o’clock Saturday evening, and already she was worn from the day. For most families, she knew, Saturday could be a day of peace, family time, or a time to be out with friends. She knew Tina and her husband were going to see a movie with some of their other friends. She’d been invited too, but of course she couldn’t come. She couldn’t leave H---- alone. It was simply not an option. To do so would risk letting him destroy himself or the house. She heard his laugh, a manic cackling as he ran through the house.

What is he doing now? she thought. She sprinted away from the mailbox, leaving the small door hanging open on its hinges and its contents peeking at the edge and waiting to leave its home there. She was gone for five seconds, and already he was running wild again. She ran through the blue-framed door inside their small old farmhouse that rested, worn in from the years it sat there, on the top of a small hill near a winding pond, much like a small river with its water moving at a brisk and busy pace. She meditated a moment on how much the very house seemed to have changed in the time since they had been there. It needed a new coat of paint, and she wondered what it would look like in red, a bright and cheerful color. She felt like she’d grown as worn as it over the years. Maybe if she brightened up the whole scene, life would be more rejuvenating. She couldn’t spare too many thoughts on the old house, as much as she enjoyed picturing her plan of their ideal American home, or she wouldn’t be able to grab H---- before he did something potentially damaging.

She heard his high-pitched cackling again and called out his name. He didn’t respond —not that she’d expected him to—and she tried to pinpoint his position from the sound of his laughter. She thought she heard him running through the hall near the back of the house. She ran back through to the hallway and called out his name again. She heard his laugh again, stationary, over near the bathroom. She turned around and headed towards him, afraid of what she might find.

She spotted him off in the corner, but not before she smelled him. He’d rubbed his own feces over his face and was moving on to rubbing the wall with it. She’d already had to wash that wall once that day—the stain and coinciding smell were becoming impossible to remove completely, becoming ingrained in the wall. This was not a typical household. She called out his name again—and once again was completely ignored. She sighed and scooted over behind him and pulled him back screaming from the wall. He didn’t use words. She wasn’t sure he could or that he ever even would. But she knew the meaning would have been “No!” Why she was the one so lucky to have a child that liked to play with feces had never been revealed to her. The specific cause of the autism her son was diagnosed with was never known.

“No,” she said, making her voice firm and sharp, “good boys do not play with poop.” All she was met with was another scream. She pulled him farther away from the wall and was glad that the bathroom was nearby. She’d have to wash him off again. He tried to bite his arm and she held him firmly against her, pulling his arms away from his mouth.

It had been a long day off, and it wasn’t over yet. She didn’t have time to think about what things would be like ten years from then, when H---- would turn eighteen and become an adult, thirteen years when he was twenty-one. The current situation was much more pressing.

***

“What’s Tyler doing, Mommy?” asked a young girl, three years old. That was me. I watched my older brother up in what we called a work room at my grandma’s house. He was playing with blocks. At least, that’s what it looked like to me at the time. My brother was playing with blocks with my mother, and getting videotaped too. “Mommy, I wanna play too,” I said, peering over the edge of the door.

“After your brother’s done working,” my mother said to me. How playing with blocks was supposed to be called work made little sense to me, so I waited and watched him until they were finished. He was having trouble sitting still, getting antsy in his seat. Maybe it wasn’t easy for him. I know now that it probably wasn’t, and it certainly wasn’t the same for him as it was for me.

When he’d finished, I made my mom play the same game with me. I remember it wasn’t as fun as it looked, but I still got to play with blocks with my mom, so I didn’t mind. The workroom was what I thought of as a second play room, the one in our own house filled with toys. I never did understand why it was called the “work room” when I was that little; all I knew was that was what the name of it. It never occurred to me that what to me was defined as fun and exciting even could be called work. But then again, I was three, and the world was coated in sugar plums and princesses, and I just knew that someday my twin who had mysteriously been separated from me at birth would be reunited with me and we’d grow up to be magical witches together and save the world.

I often wondered what my brother dreamed of, and, though he was two years older than me, in my dreams he was my little brother in bright yellow shorts, and I took care of him. The depths of my dreams weren’t lying to me in that sense, as while I grew up, he’d retain aspects of a child. But in my dreams, it was easier if he was younger than me, and simply lost in ignorance.

“Arrange the blocks like this,” my mom said, showing me a pattern. I obliged in childhood glee, and wondered just what it was that had caused my brother so much grief to be there.

***

She walked down the stairs early in the morning. Sunday. She hadn’t gotten much sleep, but she enjoyed the morning hours when the world was soft and still. She peeked inside her young son’s room, laying still in his bed and cuddling with his small pillow as he slept. He looked very peaceful in his slumber, and for a minute she just stood over him and watched, stroking his hair. She wished there were more moments of peace, but she loved him all the same. A smile overcame her face as she watched him rest, easy in the first rays of the sun. The gentle light bounced off his hair, reflecting through the window.

She only wished there was more that could be done for him; his school seemed hardly effective. The program they gave him was barely invoking any positive change. He was slightly less manic and loose than he was in the past, but it could hardly be said he was gaining any headway in the direction of what most would call normal.

She caressed the soft skin on his arms where bite marks still displayed themselves clearly. He had made them himself, and she wondered when they would get him, if not to start acting normal, to stop hurting himself.

***

“When I’m older, I’m going to be a ballerina mom and I’m going to have six kids,” I told my mother, standing on her feet in the family room by the window with the view directly into the heart of a large red tree. I hung off her arms and legs, clinging to her in every way I could. “I’m going to have three boys and three girls when I get married and I’m going to name one of them Spot,” I added.

My mother smiled at me and rested her hand on my little blonde head. “You’re going to be a perfect ballerina,” she said, smoothing my hair between her fingers.

I smiled and snuggled deeper into my mother’s leg. After a moment’s pause, I pulled my face out of her jeans and looked up at her face. “Mommy, who’s Tyler going to marry when he grows up?” I asked.

My mom didn’t smile that time, but her face didn’t change too much. “Tyler’s not going to have anyone to marry him, honey,” she said, just like that.

“I’ll marry him then!” I said. My mother laughed and told me I couldn’t do that because he was my brother. I told her I didn’t care and I’d love him forever anyway. I ran off to find my brother with my checker board. I’d already taught him to spell the most important word in the world (pink), and I had to teach him to play checkers with me. If he was going to be my husband, he needed to know how to play checkers. I grabbed the red and green set—with small wooden pieces coated in gold sparkles--my grandma had given me and set it up on the rug.

My brother laughed without really understanding and I had to move for him, but I tried. I spent a few good hours teaching him until he stood up and walked away from me to go play with his snake, wandering aimlessly around the house and leaving me alone on the floor.

***

Where is H----? she thought, wandering through the quiet house, lit up by the mid-afternoon sun. She walked in a lazy stride around the house in a casual search for her young son. She didn’t see him in any room in the house and thought that maybe she’d simply overlooked some small corner, or he was hiding in a closet. A small shred of worry entered her heart but she didn’t let it grow and quickly quelled it. He couldn’t have gotten far. She walked a tad bit quicker, her steps making a steady tap-tapping on the old wood floors. She checked each room again, slightly more vigorously. Each passing moment that she did not find him, her heart beat a little faster, and without knowing where else to look she ran again through the house, hoping she had just passed him. She ran once more through the house, before she skidded to a stop by the front door. It’d been left open, and the screen was hanging, swinging slightly with the wind. “H----!” she yelled, voice laced with frantic desperation before sprinting out the door. What if he ran into the road?

She ran out the door and searched the green grass hill, shouting over the large expanse of space there and running towards the pond. Her son couldn’t swim. “H----!” she yelled. She spotted him near a patch of old fallen leaves near the pond, dipping his feet in the water. He spotted her and tried to run away, into the cool water passing by his feet. She sprung over to him, as fast as she could and grabbed him as he sank into the water, about to go under. She held him fast, and the more he pulled away from her the closer she squeezed him.

For a moment, she thought of where he would be if she didn’t get there, and thought of her only son, drowning in the deep rushing water. She thought about everything that’d be gone with him, an entire future erased. She held him closer, not because she was afraid of him falling in, but because she was afraid she’d let go to spare him. What future could he have? She wouldn’t be around for him forever, and at the rate he was going, he’d never take care of himself. He couldn’t talk, he couldn’t write, and he barely even responded to his own name, running wild much of the time. She held him close and kissed him, his soft hair and wet clothes pressed against her, and she knew she could never let him go. For whatever else he was, he was her son, and she loved him for it.

***

“Tyler might be moving out in a few months,” said Mom, driving me home from my Japanese class. I wasn’t a kid anymore. That was a few weeks ago. I sat in the front seat and stared out the windshield into the dark expanse of space in front of us. “I just thought you might want to know,” she said. Her eyes started coating with unshed tears, and her voice fell flat. I didn’t say anything. I don’t share her sorrow.

“If we don’t try to get him a place now, we might not get one again for years,” she continued. Tyler can’t live by himself, but the plan was always to get him to a point where he had the skills to do most things on his own. He’d live in a house with a few other guys like him and someone to watch over them, but he would be able to do okay on his own.

“Sounds good,” I said. I didn’t want to smile, though I was happy enough at the news, because my mother was so upset and I thought I’d make it worse.

“I told you, because I thought you might want to be prepared,” she said again, looking over at me at the stoplight. “I thought you might be sad he was leaving, but I guess that’s just me.”

“Well, I’m looking on the bright side of things,” I said. I couldn’t keep sitting there in silence, especially when my mom was clearly upset, so I had to say something. “He’s moving out to a future, if he were normal he’d be going to college next year anyway. Moving out is a good thing,” I said. I’d never actually thought my brother would even hold a job, so I was excited.

“I’ll miss him,” she said to me. “It’s just sad it’s always going to be this way.” I nodded and leaned back in my seat. There’s not much more I can do for him, so there’s nothing else to say.

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Save the Date: OAR's Conference Promises the Latest on Research, Networking, and Education

OAR will host its Sixth Annual Applied Autism Research and Intervention Conference on Friday, October 24 and Saturday, October 25, 2008 at the Westin Arlington Gateway in Arlington, VA. Following our time-tested format, there will be two simultaneous tracks on each day of the two-day event: OAR-Sponsored Research; Research to Practice; Social Skills/Adaptive Behavior; and Life Outside the Classroom.

Friday will begin its jam-packed schedule with an opening keynote address, “Social Engagement in the First Two Years of Life with Autism Spectrum Disorders,” by Ami Klin, Ph.D. Dr. Klin is the Harris Associate Professor of Child Psychology and Psychiatry at the Yale Child Study Center. He directs the Autism Program at Yale, which is one of the National Institutes of Health Autism Centers of Excellence and includes a broad range of diagnostic and treatment services and an interdisciplinary program of research that includes behavioral, brain, and genetics investigations. His presentation will cover new research and clinical insights regarding the social engagement and development of infants and toddlers with autism spectrum disorders. This information will help society to better understand developmental trajectories and expression of symptoms of autism in later childhood, including major challenges faced by educational and other professionals building remedial programs.

After breaking out into the two tracks during the day, attendees will once again come together for the closing keynote address, “What in the World is Autism? How Culture Shaped a Disability,” given by Roy Richard Grinker, Ph.D. Dr. Grinker is a professor of anthropology, human sciences and international affairs at George Washington University. As an anthropologist and a father of a child with autism, his position allows him to answer questions such as “How did autism shift from being a rare disorder to an epidemic?” and “Is it possible that the change in prevalence is a sign of progress rather than harm?” in a new light. Author of the book Unstrange Minds: Remapping the World of Autism, Dr. Grinker will discuss the shift in how we view and count autism as part of a set of broader shifts taking place in societies throughout the world, including those in sub-Saharan Africa, India, and South Korea.

OAR will launch Day Two of the conference with a keynote address, “The Key to a Quality of Life: Effective Communication,” from Joanne Gerenser, Ph.D., a member of OAR’s Scientific Council (read her article for this issue of The OARacle on page 6). Dr. Gerenser is the executive director of the Eden II Programs on Staten Island, New York. In addition to authoring several book chapters and articles, Dr. Gerenser is co-author of the interactive CD-ROM “Behavioral Programming for Children with Autism.”  In her talk, she will review the core issues in autism spectrum disorders that impact the development of effective communication skills, as well as the impact that limited communication skills have on all other aspects of functioning.

“The OAR conference represents an all too rare opportunity for parents and professionals to be brought up-to-date on some of latest evidence-based interventions and practices in autism,” says OAR President Peter Gerhardt, Ed.D. “Every year I think the quality cannot get any better, and every year it does.”

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Focus On OAR Research

Night and Day: Investigating How Sleep Affects Daytime Functioning in Children with Autism

A good night’s sleep refreshes us physically and emotionally. Who hasn’t woken up after a night of deep sleep, feeling like a new person? Even more critical for children, a good night’s sleep is often an elusive goal for many children with autism. More than half of parents of children with autism report a sleep disturbance in their children, including difficulty falling asleep, waking during the night, awaking early in the morning, short total sleep time, and nightmares.

That statistic led Susan Mayes, Ph.D., a professor and researcher at the Penn State College of Medicine, to apply to OAR to fund a study on sleep disturbance. “I am looking at the relationship between sleep and daytime functioning, such as academic performance, mood, behavior, and neuropsychological functioning. The goal of the study is to determine the frequency, type, and severity of sleep problems in children with autism, then to determine how characteristics such as age, IQ, gender, and severity of autism might affect sleep. I’m also examining how comorbid conditions, like mental retardation, anxiety, and depression, affect sleep in children with autism,” Dr. Mayes explains.

She hopes that the study’s results will advance knowledge of how sleep is related to daytime functioning, information that she believes will help parents, clinicians, and educators in how they work with children. “My team and I have collected information on more than 500 children through questionnaires filled out by their parents,” she explains. The data from her study can also help identify which children are at risk for sleep problems, allowing an early diagnosis and treatment. “By examining the factors related to sleep, the study can help target areas for intervention to improve sleep, thereby improving sleep and daytime functioning.”

How the Study Works

Mayes and her team are analyzing clinical data on more than 500 children with autism, 6 to 15 years of age with Full Scale IQs of 40 to 143. Parents rated their children on a 4-point scale from “not at all a problem” to “very often a problem” on the nine sleep problem items on the Pediatric Behavior Scale (PBS). The PBS yields five sleep problem scores: 1) sleep disturbance (difficulty falling and staying asleep), 2) sleeps less than the norm, 3) parasomnias (nightmares and walking and talking in sleep), 4) daytime sleepiness, and 5) a total sleep-problems score based on norms for the child’s age and gender. The PBS also yielded scores on several subscales, including five to be used in the proposed study: 1) behavior problems (e.g., opposition and aggression); 2) mood disturbance (e.g., irritability and explosiveness); 3) inattention, impulsivity, and hyperactivity; (4) anxiety; and 5) depression. The PBS was chosen as the primary sleep measure because it yields a norm referenced standard score, unlike other sleep scales.

The severity of autistic symptoms is indicated by scores on the PBS autism items and the total score on the Checklist for Autism in Young Children. The Checklist for Autism is completed by a clinician based on a parent interview and other information, such as observations of the child, teacher report, previous evaluations, and school records. Children also completed reading, math, and written expression subtests from the Wechsler Individual Achievement Test. In addition, the children were administered tests that measure neuropsychological functions, including attention, executive function, working memory, response inhibition, processing speed, and graphomotor skills. Children also completed the WISC-III or WISC-IV verbal and nonverbal IQ subtests measuring verbal reasoning, abstract and conceptual thinking, vocabulary, comprehension, social reasoning, visual logic, and visual-motor skills.

Disseminating the Results

Mayes says that preliminary results have already been presented at one conference and submitted for publication. She will be presenting further results at a conference in June and a symposium in the fall. In addition, Mayes notes, the department of psychiatry where she works has a mental health training program for community practitioners. “We recently did a teleconference on sleep disorders in children and children with autism were a big focus. Providing program like this and posting study results on our department’s autism Web site are other ways for us to disseminate the findings.”

“Preliminary results show that children with autism have more sleep problems than typical children,” Mayes says, “and more sleep problems than children in other diagnostic groups, including children with ADHD, anxiety, depression, and brain injuries.”

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Research Review: Challenging Behavior, Part TWO

by Peter Gerhardt, Ed.D.

This month’s research review again looks at some of the more current research on effective intervention with the challenging or problematic behavior displayed by some individuals with autism. The first two articles address the question of instruction as it correlates to challenging behavior while the third article investigates the relationship between a biological event (Otitis Media) and self-injurious behavior.

Effects of Embedded Instruction Versus Discrete-Trial Training on Self-Injury, Correct Responding, and Mood in a Child with Autism

In this study, the authors investigated the effectiveness of discrete-trial training versus embedded instruction with a 12-year-old boy with autism who engaged in escape-maintained self-injurious behavior. Embedded instruction is characterized by the use of existing routines as the context for instruction with the teacher, or other professional, inserting learning opportunities into the natural flow of the activity. For example, if a child is listening to music, the teacher might insert a learning opportunity every 30 seconds by turning the music off and prompting the child to request more music. In contrast, discrete-trial training involves the presentation of repeated and frequent instructional opportunities during a more structured teaching session.

This study should be considered important as little is known about whether the presence of escape-maintained behavior might influence the relative effectiveness of either instructional protocol. The study participant was a 12-year-old boy with autism and a severe intellectual disability who was nonverbal and did not have any functional communication system in place. Self-injury consisted of hitting himself in the face or forehead with his open palm with episodes of self-injury lasting anywhere from a few minutes to several hours. Dependent variables included frequency of self-injury, correct responding to instruction, and mood (as measured on a 3-point scale from “bad” to “neutral” to “good”).

Using an ABABA design, embedded instruction took place during three preferred activities including swinging, walking, and listening to music. In all three cases, instruction consisted of interrupting the activity and requiring the student to indicate “more” or, in the case of the music, press a button to restart the tape. Discrete-trial instruction consisted of repeated trials of either a motor imitation task or a receptive labeling task.

The results indicated that embedded instruction was the more effective instructional format resulting in fewer episodes of self-injury, greater correct responding, and higher (more positive) mood ratings. The authors note, however, that the data on correct responding should be interpreted with caution, given that the two conditions targeted different behavioral responses with, in particular, the ones taught using embedded instruction (“more”) being much more functionally appropriate than either motor imitation or receptive labeling. Despite these limitations, the findings are positive and, according to the authors, indicate that for children with autism and escape-maintained behavior, beginning with embedded instruction and then transitioning, over time, to more intensive discrete-trial instruction, might be considered an appropriate course of instruction.

Sigafoos, J., O’Reilly, M., Ma, C.H., Edrisinha, C., Cannella, H., & Lancioni, G.E., (2006). Effects of embedded instruction versus discrete-trial training on self injury, correct responding, and mood in a child with autism. Journal of Intellectual and Developmental Disabilities, 31, 196-203.

Reducing Student Stereotypy by Improving the Teacher’s Implementation of Discrete-Trial Teaching

Using a multiple baseline design, Dib and Sturmey investigated to what extent increases in the ability of three teaching assistants to correctly implement discrete-trial instruction would be associated with decreases in stereotypic behavior in their students with autism. All three students were males, 9 to 12 years old, and attended a private school for children with autism. The teaching assistants were young (ages 19 to 25 years old) females and were identified as candidates for this study due to 1) low levels of accurate discrete-trial teaching and 2) higher levels of student stereotypy when compared to other staff members.

In Step 1 of the intervention, staff were given, and asked to review, a copy of a discrete-trial behavior checklist focusing on task presentation, prompting, and reinforcement and praise. In Step 2, the trainer immediately gave verbal, descriptive feedback, including positive comments following appropriate teaching behavior and corrective feedback following inappropriate teaching behavior. Next, the trainer provided a data-based review of the teacher’s performance across the entire session (e.g., “You prompted correctly during only 30 percent of the intervals.”). In Step 3, the trainer again reviewed the components on the checklist while modeling each target behavior. In Step 4, feedback and modeling were continued until staff were able to complete the checklist without errors on two consecutive occasions.

The results indicated that increasing the accuracy of teacher implementation of discrete-trial teaching resulted in reductions in stereotypy for all three students. However, as a functional analysis was not completed prior to the initiation of the study, the mechanisms by which these improvements were realized (e.g., increased teacher attention, response blocking, or the strengthening of incompatible, academic behavior) remain unclear and should be the focus of future research.

Dib, N., & Sturmey, P., (2007). Reducing student stereotypy by improving teacher’s implementation of discrete-trial teaching. Journal of Applied Behavior Analysis, 40, 339-343.

Effects of Otitis Media on a Child with Autism Receiving Behavioral Intervention for Self-Injury

An often overlooked factor sometimes associated with the display of challenging behavior by children with autism is their physical health. To that end, Luiselli and colleagues provide a case report of a five-year-old boy who, following successful intervention to reduce self-injury, demonstrated periodic and unanticipated increases in the frequency and duration of self-injury.

“Joey” had a previously established autism diagnosis and did not use speech purposefully, had few independent skills, and required highly individualized instruction (1:1) to acquire new skills. During the initial functional assessment, self-injury was defined to include head-banging, head-hitting, pinching, pulling hair, and scratching face, neck, or ears. Episodes of self-injury were reported to last anywhere from several seconds to several minutes. The results of the functional assessment indicated that Joey’s self-injury was “provoked” by such antecedent events as loud noises, certain directions from staff, and having requests denied and that escape from instruction functioned as the primary reinforcing consequence.

Subsequently, an intervention plan consisting of the elimination of “high demand” instructional activities, the reduction of auditory distractions, implementation of training in the use of the Picture Exchange Communication System (PECS), the presentation of non-contingent social praise, and response blocking was implemented. The introduction of the intervention plan resulted in significant reductions in the frequency of self-injury. However, on two separate occasions during the intervention phase, Joey’s frequency and duration of self-injury increased dramatically. When this happened, Joey’s parents were notified, and they contacted their pediatrician who, in turn, diagnosed and treated Otitis Media (an ear ache), which resulted in a return to the lower levels of self-injury previously associated with the intervention.

Although not planned as a controlled study, Joey’s case demonstrates that the frequency of challenging behavior displayed by children with autism can increase deleteriously when the child suffers from a painful or uncomfortable illness or medical condition, in this case, Otitis Media. As such, seeking an appropriate medical evaluation should be considered appropriate in cases where there is significant and unexpected increase in the frequency of challenging behavior previously managed through effective intervention.

Luiselli, J.K., Cochran, M.L., Huber, S.A., (2005). Effects of Otitis Media on a child with autism receiving behavioral intervention for self-injury. Child and Family Behavior Therapy, 27, 51-56.

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Research Feature: Needed: A New Job Description for Speech-Language Pathologists

by Joanne Gerenser, Ph.D., CCC-SLP

Joanne Gerenser, Ph.D., CCC-SLP is the executive director of the Eden II Programs and an adjunct associate professor at Brooklyn College as well as Penn State University. A member of OAR’s Scientific Council, Dr. Gerenser is also a past president of the New York State Association for Behavior Analysis and the vice president of the Board of the Interagency Council for Mental Retardation and Developmental Disabilities. She has authored several book chapters and articles on speech language disorders in autism and developmental disabilities and has presented nationally and internationally on autism and related topics.

There can be little debate over the fact that there is a critical shortage of speech-language pathologists (SLPs) available to serve children in school settings (ASHA, 2004; Edgar, & Rosa-Lugo, 2007). According to the U.S. Bureau of Labor Statistics (BLS), employment of SLPs is expected to grow much faster than the average for all occupations through the year 2010. Many states have reported high vacancy rates for SLPs in their schools with obvious negative effects for the children, particularly those with severe speech, language, and communication deficits.

One of the factors contributing to this critical shortage of SLPs is that many leave the school setting after only a short time for jobs in hospitals, home care, private practice, or an alternative career. One study examining factors that contributed to retention of SLPs found that dissatisfaction of the job was one of the primary reasons for turnover (1999). Furthermore, it was found that an SLPs caseload size was highly predictive of job satisfaction.

Currently, the most prevalent service delivery model in school settings involves direct service in a separate treatment room. (ASHA, 1999, 2004; Brown, Carpenter, & Caperton, 2001). This model focuses on treating discrete skills with little contextual support. Most of the time, the SLP’s caseload reflects direct service across the entire school day. In fact, some states require 100 percent efficiency measures by related service providers to secure funding. Unfortunately, full caseloads leave little time for other essential activities that in some cases are critical for effective outcomes (e.g., parent training, classroom consultation, observations across settings) and in other cases are simply mandated by regulations (necessary paperwork, testing, I.E.P. development).

Changes in the way speech and language services are delivered is critical. In 2002, the American Speech-Language-Hearing Association (ASHA) published a position statement that indicated that total workload activities required and performed by the school-based SLP must be taken into account when setting caseload. This workload approach (in contrast to a caseload approach) takes into account all the essential activities that are needed to achieve best outcome for each individual learner with a significant communication disorder. This flexible type of service delivery model is important for two key reasons. First, it addresses the issue of overloaded caseloads and in turn improves job satisfaction. Second, and even more essential, it allows the SLP to engage in activities that improve student learning and outcomes.

There is probably no population of children for whom a caseload approach to service delivery is less appropriate than children on the autism spectrum. This type of service model fails to address the basic core deficits of individuals with autism spectrum disorders (ASD) in terms of issues of generalization, stimulus overselectivity and challenges in social communication. In order to truly meet the complex speech, language, and communication needs of a child with autism, the SLP must be able to observe the child across different settings to assist in generalization. The SLP must have time to work with the classroom teacher to assist in curriculum modifications as needed. The SLP must be available to participate in team meetings, staff training, and parent training. Little to none of this can happen if a child is scheduled to receive speech therapy three times a week from 9:00 to 9:30 and the rest of the SLP’s caseload is full.

Part of the workload for the SLP would be in the form of consultation to the classroom staff working with the child. ASHA supports the use of a consultation model as an effective way to provide services to individuals with speech-language and communication deficits. In fact, ASHA proposes that the use of a consultation model increases the range of programming activities and environments for children who have severe communication impairments. The services are provided across all contexts as opposed to the non-contextual environment of the speech-therapy room. Treatment goals relate to all aspects of the school, including curricular, classroom behavior, and social interactions.

There are a number of benefits to incorporating collaborative consultation into the workload of the SLP. These benefits include:

1. The child’s environment of services becomes expanded.

2. This model promotes professional growth across all professionals involved with the learner.

3. There is a more efficient use of professional effort.

4. The fostering of communication strategies and linguistic skills that help the learner with academic tasks and social contexts.

5. Increased staff awareness of the language deficits and communicative skills of the learner.

6. The speech-language pathologist has increased opportunities to observe and interact with the child across all environments and gain a more comprehensive awareness of the child’s speech-language skills

The critical shortage of SLPs coupled with the rising incidence of ASD compels us to consider alternative treatment models. A workload approach as opposed to the traditional direct service caseload approach makes the most sense for children on the spectrum. Children with autism have complex and pervasive speech, language, and communication needs. These can range from deficits in the development of speech, resulting in the need for an augmentative/alternative communication system to failure to use language in social contexts. It is critical for the SLP to have the flexibility in his or her schedule to see the child with ASD across all settings, at different times in the day, and with different people. This flexibility is lost in a traditional caseload approach.

Many states have already begun using a workload approach as opposed to a caseload approach to providing speech and language services in schools. Preliminary results indicate improved job satisfaction on the part of the SLP. Further research is needed to determine if student outcomes are improving as well. In the case of children with ASD, it is clearly time for a change. These children need the benefit of the SLP’s knowledge and experience across the day, and not just in the speech room. For more detail on the caseload approach, see “A Workload Analysis Approach for Establishing Seech-Language Caseload Standards in the Schools: Position Statement in ASHA Desk Reference, Volume 3 (2002). In addition, refer to the references that follow for additional information.

"I cannot say whether things will get better if we change; what I can say is they must change if they are to get better."

-G. C. (Georg Christoph) Lichtenberg

References

American Speech-Language-Hearing Association (2002). Workload analysis approach for establishing speech-language caseload standards in the schools: Position statement. ASHA Desk Reference, 3, 89-90.

Blood, G.W., Ridenour, J.S., & Thomas, E.A. (2002). Predicting job satisfaction among Speech-Language Pathologists working in public schools. Language, Speech, and Hearing Services in the Schools, 33, 282-290.

Annett, M., (2004). Advocating on schools issues: SLPs in Oregon Schools Tackle Workload, Enhance Recruitment. The ASHA Leader, pp.1, 12-13.

Cirrin, F. M. (2004, June 22). Advocating for workload strategies: The Minnesota story. The ASHA Leader, pp. 1, 18-20.

Deppe, J. & Karr, S. (2004). Advocating on schools issues: States work with ASHA on caseload/workload, salary supplements. The ASHA Leader, pp. 1, 10-11.

Edgar, D.L., & Rosa-Lugo, L.I. (2007). The critical shortage of Speech-Language Pathologists in the public school setting: Features of the work environment that affect recruitment and retnation. Language, Speech, and Hearing Services in the Schools, 38, 31-46.

Harn, W.E., Bradshaw, M.L., & Ogletree, B.T. (1999). The Speech-Language Pathologist in the schools: Changing roles. Intervention in School and Clinic, 34, 163-169.

Rudebusch, J. (2006, Feb. 7). Clinicians use workload in Texas schools. The ASHA Leader, 11(2), 1, 35.

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Profile: CCCD Works for the Day It Won't Be Needed, Says Founder

When Suzanne Letso’s son, Tyler, was diagnosed with autism 15 years ago, Letso, who is a member of OAR’s Scientific Council, and her husband did what many parents do: found out as much as they could about autism and available treatments. They had a leg up since Letso was working in the medical field. “People weren’t using the Internet then so I went to the Yale Medical Library to find support for the interventions my school system told me would benefit my child. I couldn’t find anything. Because I came from the medical industry, my mindset was that we needed evidence-based practices. The only thing I could find that had evidence behind it was applied behavior analysis (ABA).”

That self-education led the Letsos and another parent to take a much bigger step—they started the Connecticut Center for Child Development (CCCD), initially to promote the use of evidence-based practice. Undeterred when they hit a stone wall, they decided to do “kind of the opposite of if you can’t beat ‘em, join ‘em. We decided if you can’t join ’em, beat ’em,” Letso says with a laugh. CCCD started creating evidence-based resources for families. As they did that, they raised the bar throughout Connecticut and the region. Parents began demanding quality services and more and more practitioners, in private and public facilities and schools, began using them. Today, Letso serves as the Center’s executive director.

Serving People with Autism and Their Families

The Center runs a number of programs, including a school for children ages 3 to 21 who are diagnosed across the range of autism spectrum disorders including those who are mildly impacted and those who are dually diagnosed with mental retardation or another condition. An annex offers a second school site specifically designed for children with Asperger Syndrome, high-functioning autism or who have reduced symptomology due to interventions.

In addition, CCCD offers its families an “Extra Steps” program, in partnership with another local human service organization. “The program provides children with extended care at the school and/or at home, if needed,” Letso explains. “For example, a child may end a day at our school at three, remain at CCCD for an extended school day until 6 pm, and then the family may also  access additional support in the evening or on weekends, either to ensure the child’s safety or to allow the family to go out.”

CCCD’s Institute for Educational Planning, a collaboration with Nationwide Children’s Hospital in Columbus, Ohio, and the psychology department at Ohio State University, is a diagnostic center that provides psychological assessments--for children with known or suspected special needs,  with a specialty in autism spectrum disorders and developmental disabilities, and re-evaluations to look at the child’s progress and alleviation of symptomology. The program also conducts educational placement evaluations focusing on the development of intervention plans that supports each child’s unique learning needs. “We look at the child’s needs and the proposed educational environments to identify appropriate educational settings, teaching strategies and necessary supports to maximize learning. ” What makes the program unique, Letso adds, is that CCCD stays involved beyond the evaluation process to advocate for the child’s needs.

Letso says that CCCD received a grant to make evaluations available to low-income families. Because of the high demand, the funding only lasted for four months. “We hope to find funding to continue the program for those families who can’t pay for evaluations and whose insurance won’t cover the cost.”

Advancing Autism Education

Letso is clear that CCCD’s mission extends beyond education. “Our mission is to be a premier provider of services for people with autism throughout their lifespan and to advance the field of autism education and evidence-based strategies for intervention. When we married those goals, it changed what we do and how we do it.” For instance, she explains, when CCCD started the school, it also started a distance-learning program with the University of North Texas to provide staff with the opportunity to earn a master’s degree in ABA. “That has helped us to contribute globally to the number of ABA practitioners and given us ‘homegrown’ experts here in Connecticut.”

Staff training is a key component of what CCCD does. “We want to help people advance in their careers. If we don’t do that, people would go to work somewhere else. We create individual training plans for staff members and look for the overlap in their goals and what we’re doing,” she says. CCCD has also developed an internal leadership training program so that staff members can assume greater and greater leadership roles. The third “prong” of their staff development is driven by individuals themselves, Letso says. “Staff members come to us when they see an unmet student or family need. For example, five years ago, Judy Palazzo, an assistant director at CCCD at the time,  suggested starting an outreach program. Judy helped design and launch this new program before returning to our school program, and promoting someone else to take over her role as outreach director.” This program now employs over a dozen people, and works with kids as young as 8 months and up to age of 22, Letso says, providing program design, staff supervision, and parent training. “Several of our programs have sprung from suggestions made by our staff or families. If the program suggestion matches the mission of the agency, and we have the human resources to run it, a new program is launched.”

In its efforts to advance evidence-based practice, CCCD also supports a variety of initiatives that work with practitioners in the region and beyond. Letso and her colleagues offer consultation for organizations or individuals around the country that are establishing or enhancing programs for children with disabilities. “We are one of the few organizations that can offer both clinical and administrative consultation specific to the field of autism education and treatment. We assist with aspects of program design and development from creating a business plan or getting 501(c)(3) status to hiring and training clinical staff,” she explains.

Community awareness is another CCCD outreach. “We co-sponsor a conference in Manhattan, along with three other autism agencies. And we talk with community groups and workers, like EMTs, police officers, and others, free of charge.” Recently, Letso says, CCCD provided training for dental technicians from a local university. “Part of their coursework included a lecture here and a tour of our facilities.”

Ultimately, Letso says, she’d love to see CCCD close its doors for good. “CCCD sprang from the concept that my husband and I are not going to live forever and some group or entity has to be here for all of our kids when we are gone. Right now, that is not always possible. We want to make it possible for people with autism to lead their lives with dignity and purpose. Our long-term goal for our students is life in the least restrictive environment. We created CCCD to generate competition with private agencies and public schools so that the amount and quality of services would increase. My hope is that both the quantity and quality of services available to children and their families will continue to increase until the point that CCCD will be put out of business because people with autism already have everything they need.”

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RUN FOR AUTISM News

Big OAR Teams Prepare For Fall’s Big Marathons

As the weather turns warmer and flowers bloom throughout the northern part of the country, many runners get out on the road again, intent on running a fall marathon. OAR is an official charity partner with two of the largest marathons in the country, and will once again have big RUN FOR AUTISM teams at both the Bank of America Chicago Marathon and Marine Corps Marathon in October. The races may seem a long way off to some, but serious participants will soon begin training with weekend-long runs to prepare for running 26.2 miles on race day.

OAR has set a goal to have 1,000 runners raise $1 million dollars for autism research in 2008. “Since the Marine Corps and Chicago Marathons provide the foundation of our fundraising effort, it is important that these two races continue to build each year. To do this, we need to have many of our past alumni runners return and also find new runners that want to join the team.” says RUN Director Doug Marocco. “In 2007, we hit impressive milestones in terms of participation and fundraising. Now that RUN FOR AUTISM has become a more established and visible charity program, participants are aware that they can run and choose RUN FOR AUTISM as a way of supporting the autism cause.”

Hoping for a Not-So-Hot 2008

The 2007 Chicago Marathon turned out be hot. Literally. Officials cancelled the Marathon while in progress due to extreme heat. The city’s emergency systems were exhausted because of the sheer number of runners that needed medical attention.

Runners completing the race in under four and a half hours made it to the finish line as “official finishers,” including many from the RUN FOR AUTISM team. Happily, none of the OAR RUNners suffered any serious problems because of the heat.

This year, the Chicago Marathon once again sold out in record time with 45,000 registered participants, proving that last year’s heat has not deterred runners from this year’s race. Now promoting a new title sponsor, the Bank of America Chicago Marathon continues to be one of the most sought-after entries in the sport of running thanks to typically cool weather, a flat course, and 1.5 million spectators to cheer runners on.

“If you want to get a race number for the Bank of America Chicago Marathon, you better act soon,” explains Marocco. “This is OAR’s fourth year as an official charity partner, and our experience tells us that our limited number of entries will go quickly. Once the charity entries are used, we will start a wait list for additional entries in case any more become available, but there is no guarantee.”

The People’s Race

Now entering its sixth year as a charity partner with the Marine Corps Marathon, OAR has seen the team grow from 63 participants in 2003 to over 300 in 2007. The RUN FOR AUTISM is just one part of OAR’s “Autism Weekend,” which also includes the Applied Autism Research and Intervention Conference and the Runners’ Recognition Dinner.

The Marine Corps Marathon, known as the “People’s Race,” celebrates the opportunity to see our national monuments on foot with 30,000 other runners. A shorter 10K race is held over part of the same course in conjunction with the Marathon. Both events use the same hilly finish line near the Marine Corps War Memorial depicting the famous flag-raising from the WWII Battle of Iwo Jima. “The nice thing about the Marine Corps Marathon and associated 10K is that you can run the race as an individual or gather up a team of runners that want to run or walk in support of autism research. So find some friends and make a day of it in our nation’s capital,” suggests Marocco.

Both the Bank of America Chicago Marathon and Marine Corps Marathon will be highly sought-after entries once open registration closes, and OAR is limited in its number of charity entries. Race registration can be completed on OAR’s Web site, and entries are available on a first-come basis.

For more information or to register and join the team, please go to OAR’s Web site at www.runforautism.org or e-mail run@researchautism.org.

Committed to Good Sport and Good Causes

Tom Steinbach Bikes, Runs, and Swims for OAR

Tom Steinbach is the first to admit that he was thinking more about the challenge and satisfaction that competing in triathlons brings than he was about raising money for any charity, let alone OAR. “I had done triathlons years ago, before kids. When a friend started doing triathlons, I started to think about getting back into them,” he explains. He re-started with the Patriot’s Half, one of Virginia Triathlon Series’ events. Participants swim 1.2 miles, bike 56 miles, and run 13.1 miles, all along Virginia’s James River.

A committed athlete, Steinbach took up running after he stopped doing triathlons. “I overtrained, running six days a week, and ended up with chronic nagging running injuries,” he says. “Triathlons provide a lot more variety for my workout routine and keep it interesting.”

This year, Steinbach will return to the Patriot Half, this time completing the event as part of OAR’s TRI FOR AUTISM. “We have two sons with special needs so my wife and I are both involved in working with kids with disabilities,” Steinbach says. His wife coaches soccer for the Special Olympics and he coaches baseball through the Challenger League. The couple has four children, two daughters in addition to the two boys, and they range in age from 14 months to 14 years. “When I started looking for triathlons, I saw OAR on the Web site and that led me straight down the path to raising money.”

When Steinbach signed up for the Patriot Half and committed to raising money for OAR, he created a Web site and e-mailed his friends to let them know what he was doing. “In less than 24 hours, I had raised more than $1,000. By the end of the week, the total was more than $2,000. Since my friends were so generous, I decided I could run the Marine Corps Marathon for OAR as well,” he explains. An Army pathologist, Steinbach has also raised money for Soldiers Undertaking Disabled Scuba or SUDS, which helps military amputees learn to scuba dive as part of their therapy. “I’m planning on doing the Beach to Battleship Triathlon in November for SUDS,” Steinbach explains.

“Tom was one of the original TRI FOR AUTISM competitors,” explains Doug Marocco, RUN FOR AUTISM director. “He raised $3,700 in 2007 and has already raised $1,000 this year. He is committed to the sport and to raising money for good causes, like OAR.”

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