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Section 9
Behavioral Support for Individuals with Autism & Their Families:
The Family Process

Question 9 | Test | Table of Contents

Dustin was 4 years 8 months old at the beginning of the project. Dustin and his family resided in a rural county in West Virginia. He had been diagnosed with autism, had no other known medical conditions, and was not taking medication. He attended a local preschool program run by the county board of education three times a week for half a day. His mother went to school with him because of safety concerns on the part of the county school system.

Three months prior to beginning the project, the Psychoeducational Profile-Revised (PEP-R; Schopler, Reichler, Lansing, & Marcus, 1990), the Vineland Adaptive Behavior Scales-Expanded Form (Sparrow, Balla, & Cicchetti, 1984), and the Gilliam Autism Rating Scale (GARS; Gilliam, 1995) were administered. On the PEP-R, Dustin received a developmental score of 79, putting him at a developmental age of 2 years 9 months. On the Vineland Adaptive Behavior Scales-Expanded Form, Dustin received the following age-equivalent scores: Communication, 1 year 6 months; Daily Living Skills, 1 year 11 months; Social Skills, 1 year 2 months; and Motor Skills, 2 years 7 months. His composite score was 53 (2 years 3 months). The autism quotient on the GARS was 102, placing Dustin in the 55th percentile. Reported difficulties on the initial application for the family focus project included having limited speech, not responding when spoken to, having difficulty playing with peers, and needing assistance to complete toileting and other hygiene activities.

Dustin's parents were married, and he had an older brother. Both of his parents worked full-time, but his mother had to arrange her work hours to accommodate Dustin's school schedule. In addition to school system participants, extended-family members and friends were involved in and participated on Dustin's team. Team members included Dustin's parents, brother, aunt, grandparents, and babysitter; a family friend; two special education teachers; a general education teacher; the special education director; a school psychologist; and a case manager.

Phase I: Family-Centered Planning and Assessment
A family profile was completed during Phase I of the process with Dustin's parents. The family profile revealed that extended-family members were involved in supporting the family and that opportunities to participate in sports-related events were important to the family. Also, Dustin's parents reported that many times during the day were stressful and that Dustin controlled or influenced many of the choices they made as a family. For instance, Dustin's parents reported that his challenging behavior influenced where the family went in the community, what they watched on television, what they ate, and when he took a bath and went to bed. Dustin's parents reported they had few opportunities to spend time alone together. The family also indicated a need for services beyond case management.

Phase II: Team Training and Planning
Dustin's team participated fully in all of the program components of Phase II, attending lectures and small-team meetings. Four lectures were scheduled and occurred 1 day (approximately 6 hours) per month for 4 months. Small-team meetings also were scheduled and occurred half a day (approximately 3 hours) per month for 6 months. The team initially met to complete a PATH. The goals developed by the team through the PATH process included increasing attention to task, riding a tricycle, making choices, increasing play skills, increasing independent self-help skills, increasing verbal communication, following directions, decreasing outbursts (pushing, poking, pinching, hitting, or kicking others; whining; crying; saying "no," "you're mean," or "sorry"; stiffening, squatting down, and refusing to move; or sitting on the floor and pulling away), and following a classroom routine. The team also decided to explore the possibility of obtaining from the local behavioral health center additional support services, such as Title XIX Waiver and Family Support. The team developed and implemented a plan of action to address each of these areas.

Although all of the goals set out during the PATH process and listed above were addressed, the team determined that increasing Dustin's mean length of utterances, teaching him to follow directions, increasing his ability to toilet independently, and decreasing his outbursts would be prioritized as target areas and data would be collected on each of these. The team determined operational definitions and data-collection procedures, including the type of data and the frequency of data collection. Team members who had direct contact with Dustin (e.g., parents and teachers) collected the data. Autism Training Center (ATC) staff members provided support with and training for data collection. Baseline data indicated that Dustin used primarily one-word utterances. Dustin was able to complete 29% of the steps of a 15-step toileting task analysis independently. At the time of baseline data collection, Dustin was able to walk to the bathroom, turn on the light, pull his pants and underwear down, sit on the toilet, and leave the bathroom independently. He needed assistance to complete all of the other steps of the toileting routine. Dustin followed the direction "time to go" an average of 70% of the time but only followed the directions "sit down" and "come here" an average of 52% and 29% of the time, respectively. Baseline data also indicated Dustin had an outburst an average of 7.3 times per day.

A functional assessment was completed through informal interviews with team members and direct observation of challenging behavior. Direct observation data were collected by Dustin's teachers and parents and ATC staff members across 7 consecutive days using a modified version of the Functional Assessment Observation Form (O'Neill et al., 1997). Direct observation data were summarized in a graph by the facilitator and presented to the team for their review of and input on the support plan. The results of the functional assessment indicated outbursts were most likely to occur when Dustin was hungry or tired or when there was a change in his routine, especially if he was with his mother or placed under a demand. Following an outburst, Dustin received physical attention (e.g., hugs, being held or caressed) and verbal attention (e.g., being told "it's ok" or asked "what's wrong?"). Occasionally, Dustin was able to delay or end activities. Thus, the primary function of outbursts was to access attention from others and/or delay or end activities.

Although direct observation data were collected on only a portion of the goals set by Dustin's team, all of the goals were implemented and contributed to the comprehensive nature of the plan. The team developed a task analysis of Dustin's toileting routine and posted this visually as a reminder for those working with him. The team agreed to present directions only when they could physically assist Dustin in following through with the direction. Team members modeled appropriate verbalizations under appropriate situations (e.g., saying "milk" when he wanted milk) and expanded on his verbalizations as Dustin made progress (e.g., if Dustin was consistently saying "popcorn" to request popcorn, then team members began modeling and requiring Dustin to imitate "more popcorn" and finally, "I want more popcorn"). The team also taught Dustin specific phrases to request attention (e.g., "Play with me"). The frequency of praise and other forms of attention were increased, and outbursts that were motivated by the opportunity to gain attention were ignored. When outbursts were motivated by the opportunity to escape requests, the adult ignored the outburst, assisted Dustin in following through on the request, and then provided praise for following the request, even though he was prompted to do so.

In addition, the team developed a summer playgroup to increase Dustin's social skills, assist in his transition to kindergarten, and increase his access to community activities. The playgroup met 10 times throughout the summer, for a total of 32 hours. Approximately 10 typical children, ages 4 to 7 years, who lived in Dustin's community participated in activities. Two to three typical children participated in each activity. Dustin knew some of the typical children; others he did not. A variety of activities were provided, including playing games and activities at Dustin's house, going out to eat, playing at a park, and swimming. A student in an autism practicum course conducted the playgroup. The practicum student also accompanied Dustin to a summer program for at-risk students at the school that he was to attend in the fall. This allowed Dustin to become familiar with his kindergarten setting and some of the students who would attend that setting in the fall. This summer program also allowed Dustin to experience large-group activities.

Child and Family Outcomes
Direct observation data were collected on the priority target behaviors as described previously. Data were collected following implementation of the plan and approximately 1 year later as a follow-up to the PBS training. Dustin's mean length of verbal utterances increased from an average of 1 during baseline to 2.8 during treatment. During the 12-month follow-up, the mean length of verbal utterances was 7.2. Following treatment, the percentage of steps of the toileting routine that Dustin could complete independently rose from 29% to 75%. At follow-up, Dustin was completing a mean of 81% of the steps independently. He continued to need gestural prompts to turn the water on and verbal prompts to use soap when washing his hands.

Dustin's ability to follow directions also improved. Each time one of the targeted directions was presented, whether Dustin followed the direction within 10 seconds of the request was recorded. Overall, the average percentage of directions followed increased to higher than 80% during treatment and follow-up.

Outbursts decreased in frequency over time. During baseline, Dustin had an outburst an average of 7.3 (range: 4-15) times per day. Outbursts decreased to 4.7 (range: 0-24) times per day after the plan was implemented. Follow-up data indicated that Dustin had an outburst an average of 1.3 (range: 0-2) times per day.

At the end of the project, approximately 6 months after the team began meeting, a Quality of Life Interview (Kincaid, Knoster, & McFarland, 1998) was conducted with team members. Eight team members, including Dustin's mother, father, and teacher, rated 10 statements related to quality of life issues on a 5-point Likert scale (1 = decreased/ worsened, 3 = stayed about the same, 5 = increased or improved). Participants were instructed to rate statements based on Dustin's life circumstances since the beginning of the PBS process. Mean ratings and standard deviations are shown in Table 1. Mean ratings were greater than 3 for all statements.

As part of the Quality of Life Interview, respondents were asked to collectively list three challenging and appropriate behaviors that were targeted at the beginning of the process. Respondents then individually answered a series of questions related to how these behaviors changed over the course of the project and the contextual fit of strategies used to assist in these changes. Eighty-seven percent of respondents perceived that challenging behavior occurred less frequently, and 100% indicated that challenging behavior was less severe and occurred for a shorter duration. Seventy-nine percent of respondents indicated that they thought that Dustin used appropriate skills more frequently, and 82% indicated that Dustin used appropriate skills more independently.

In terms of the contextual fit of strategies used to reduce challenging behavior and increase more appropriate behavior, respondents rated a series of four questions on a 5-point Likert scale (1 = not at all, 3 = somewhat, 5 = a great deal). The first three questions related to how well strategies worked, how comfortable team members were with them, and whether or not strategies were consistently implemented. Mean ratings on these questions were higher than 3.5 for both challenging and appropriate behavior. The last question related to the degree to which strategies interfered with family and school routines. Mean ratings on this question were at or below 2 for challenging and appropriate behavior (see Table 2).

As a final measure of quality of life changes, the family was asked to provide a typical daily schedule, pinpointing stressful and positive times and times they would like to change during the day. They were asked to provide this information at the beginning and end of the project.

Additional anecdotal information indicated that there were improvements in the lives of Dustin and his family. Within the year following the project, Dustin participated in a typical birthday party, went trick-or-treating for the first time, and joined a T-ball team. Dustin's brother won an award for his entry in the state social studies fair on a project related to autism. Dustin's mother began working a normal schedule at her job. Dustin was fully integrated into kindergarten, with support, following the project. He continues to attend a general education class full-time. Although his team does not continue to meet formally at this time, Dustin's mother reported that key team members continue to communicate regularly regarding Dustin's progress and needs.
- Becker-Cottrill, Barbara, McFarland, Jennifer & Vicki Anderson, A model of positive behavioral support for individuals with autism and their families: the family focus process, Focus on Autism & Other Developmental Disabilities, Summer 2003, Vol. 18, Issue 2.

Personal Reflection Exercise #2
The preceding section contained information about behavioral support for individuals with autism and their families. Write three case study examples regarding how you might use the content of this section in your practice.

Update
Associations between Autism Traits
and Family Functioning Over Time
in Autistic and Non-Autistic Children

- Ten Hoopen, L. W., de Nijs, P. F., Slappendel, G., van der Ende, J., Bastiaansen, D., Greaves-Lord, K., Hakkaart-van Roijen, L., & Hillegers, M. H. (2023). Associations between autism traits and family functioning over time in autistic and non-autistic children. Autism : the international journal of research and practice, 13623613231151784.

Peer-Reviewed Journal Article References:
Crown, N. J. (2021). Oh no! I see a pit: Making sense of the sensory on the autism spectrum. Psychoanalytic Psychology.

Proff, I., Williams, G. L., Quadt, L., & Garfinkel, S. N. (2021). Sensory processing in autism across exteroceptive and interoceptive domains. Psychology & Neuroscience. Advance online publication.

Ungar, W. J., Tsiplova, K., Millar, N., & Smith, I. M. (2018). Development of the Resource Use Questionnaire (RUQ–P) for families with preschool children with neurodevelopmental disorders: Validation in children with autism spectrum disorder. Clinical Practice in Pediatric Psychology, 6(2), 164–178.

QUESTION 9
During the PATH process, what did the team determine were priority target areas? To select and enter your answer go to Test.