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Autism: Family Life - Tactics for Getting Normal Again
Autism continuing education social worker CEUs

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

CEU Question 9 | CEU Test | Table of Contents | Autism
Social Worker CEUs, Psychologist CEs, Counselor CEUs, MFT CEUs

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 Play skills Autism Family Life social work continuing edwas 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.
The article above contains foundational information. Articles below contain optional updates.

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.

Online Continuing Education QUESTION 9
During the PATH process, what did the team determine were priority target areas? Record the letter of the correct answer the CEU Test.

 
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The article above contains foundational information. Articles below contain optional updates.
Impact of a digital Modified Checklist for Autism in Toddlers–Revised on likelihood and age of autism diagnosis and referral for developmental evaluation
Autism, Ahead of Print.
The present study is a single-site quality improvement project within pediatric primary care involving the implementation of a digital version of the Modified Checklist for Autism in Toddlers–Revised. We evaluated the impact of the digital screener on the likelihood of physician referral for a developmental evaluation or autism diagnosis, and the age of the patients at the time of the event. Patients were children 16–30  months old seen for 18 and 24 months’ well-child visits (1279 encounters), who screened positive for risk for autism spectrum disorder on the Modified Checklist for Autism in Toddlers–Revised without a previously documented autism spectrum disorder diagnosis. Comparisons were made between a cohort of children screened with the paper and pencil version of the Modified Checklist for Autism in Toddlers–Revised before the digital version was implemented and a cohort of children screened during the intervention period. Patients were followed until 48 months and referrals were obtained from electronic health records. Patients screened with the digital Modified Checklist for Autism in Toddlers–Revised were five times more likely to be referred for a developmental evaluation. The automatic scoring, risk assessment, and referral decision support features helped to improve screening outcomes. In this clinic, process change to a digital screening method with automatic guidance for next steps improved adherence to evidence-based clinical care.Lay abstractThis was a project in primary care for young children (1–2 years old). We tested a parent questionnaire on a tablet. This tablet questionnaire asked questions to see whether the child may have autism. We compared the paper and pencil version of the questionnaire to the tablet questionnaire. We read the medical charts for the children until they were 4 years old to see whether they ended up having autism. We found that doctors were more likely to recommend an autism evaluation when a parent used the tablet questionnaire. We think that the tablet’s automatic scoring feature helped the doctors. We also think that the doctors benefited from the advice the tablet gave them.
Implementing early intensive behavioral intervention in community settings
Autism, Ahead of Print.
Although research shows early intensive behavioral intervention is efficacious when delivered in university or private intervention centers, little is known about effectiveness or feasibility of disseminating early intensive behavioral intervention to larger communities. The Michigan State University Early Learning Institute was developed to address gaps in distribution of early intensive behavioral intervention to community settings, with an emphasis of serving children and families on Medicaid. This short report describes the Early Learning Institute’s approach and preliminary utilization data among Medicaid families. Results suggest the model has potential for dissemination within community settings and promote utilization among Medicaid children.Lay abstractAlthough research shows early intensive behavioral intervention can be very beneficial for children with autism spectrum disorder when delivered in university or private intervention centers, little is known about the best way to provide early intensive behavioral intervention within the broader community. The Michigan State University Early Learning Institute was developed to address challenges with providing early intensive behavioral intervention in community settings, with an emphasis on serving children and families on Medicaid. This short report describes the approach taken by the Early Learning Institute and reports data regarding enrollment and utilization among Medicaid families. Results suggest the model has potential to be used within community settings and that children on Medicaid are likely to consistently attend their treatment sessions.
Work, living, and the pursuit of happiness: Vocational and psychosocial outcomes for young adults with autism
Autism, Ahead of Print.
Longitudinal data on the functioning of adults referred for possible autism as children are sparse and possibly different from datasets consisting of adult clinical referrals. A total of 123 young adults, mean age of 26, referred for neurodevelopmental disorders in early childhood were categorized into three outcome groups: autism spectrum disorder (ASD) diagnosis at some point and current intelligence quotient (IQ) ⩾ 70 (Ever ASD-Higher IQ), ever ASD and current IQ < 70 (Ever ASD-Lower IQ), and individuals who never received an ASD diagnosis (Never ASD). Independence and well-being were assessed through direct testing, questionnaires, and interviews. Verbal IQ, beyond intellectual disability status, accounted for group differences in employment; autistic features (Autism Diagnostic Observation Schedule Calibrated Severity Score) were uniquely related to adaptive skills and friendships. In many ways, the Never ASD group had similar outcomes compared to the ASD groups. However, lower well-being and fewer positive emotions were related to ASD diagnosis across IQ. The Ever ASD-Lower IQ group had the highest levels of irritability, hyperactivity, and medications. Families played a major role in supporting adults with and without ASD at all intellectual levels. Realistic ways of increasing independence should be developed through working with adults and their families, while acknowledging the contribution of individual differences in mental health, intelligence, and autism symptoms across neurodevelopmental disorders.Lay abstractIt is important to better understand how adults with autism are functioning in adulthood. Studies that have tracked individuals across the lifespan can help identify developmental factors influence differences in adult outcomes. The present study examines the independence, well-being, and functioning of 123 adults that have been closely followed since early childhood. Autism diagnosis and cognitive assessments were given frequently throughout childhood and during adulthood. We examined differences between adults who had received an autism diagnosis at some point with higher cognitive abilities (Ever ASD-High IQ) and lower cognitive abilities (Ever ASD-Low IQ), as well as adults who never received a diagnosis of autism in the course of the study (Never ASD). We found that autistic features specifically related to adaptive skills and friendships, and verbal intelligence related to work outcomes. In many ways, the Never ASD group had similar outcomes compared to the ASD groups. However, adults with ASD tended to have lower well-being and fewer positive emotions. Families played a major role in supporting adults with and without ASD at all intellectual levels. The findings suggest that realistic ways of increasing independence need to be developed by working with adults and their families, while acknowledging the contribution of individual differences in mental health, intelligence and autism symptoms across neurodevelopmental disorders.
Does implementing a new intervention disrupt use of existing evidence-based autism interventions?
Autism, Ahead of Print.
This study examines how the introduction of TeachTown:Basics, a computer-assisted intervention for students with autism spectrum disorder, influenced teachers’ use of other evidence-based practices. In a randomized controlled trial that enrolled 73 teachers nested within 58 schools, we used three-level hierarchical linear models to evaluate changes in teachers’ use of evidence-based practices across the school year for those who received TeachTown:Basics versus those assigned to control. Both groups received training and implementation support to deliver three well-established evidence-based practices for autism spectrum disorder. Qualitative interviews were conducted with 25 teachers who used TeachTown:Basics to better understand their experience. Compared with teachers in the control group, teachers in the TeachTown:Basics group reported significantly less growth over the 9-month period in their use of evidence-based practices that require one-to-one instruction (ps < 0.05), but no difference in their reported use of evidence-based practices that do not involve one-to-one instruction (p = 0.637). Qualitative interviews indicated that teachers viewed TeachTown:Basics as an effective substitute for one-to-one instruction because it was less burdensome, despite the lack of support for TeachTown:Basics’ effectiveness. Before introducing new practices, education leaders should carefully consider both evidence of effectiveness and the potential impact on the use of other evidence-based practices.Lay abstractInterventions for children with autism spectrum disorder are complex and often are not implemented successfully within schools. When new practices are introduced in schools, they often are layered on top of existing practices, with little attention paid to how introducing new practices affects the use of existing practices. This study evaluated how introducing a computer-assisted intervention, called TeachTown:Basics, affected the use of other evidence-based practices in autism support classrooms. We compared how often teachers reported using a set of evidence-based practices in classrooms that either had access to TeachTown:Basics or did not have the program. We found that teachers who had access to the computer-assisted intervention reported using the other evidence-based practices less often as the school year progressed. Teachers also reported that they liked the computer-assisted intervention, found it easy to use, and that it helped overcome challenges to implementing other evidence-based practices. This is important because the computer-assisted intervention did not improve child outcomes in a previous study and indicates that teachers may use interventions that are appealing and easier to implement, even when they do not have evidence to support their effectiveness. These findings support the idea of interventions’ complexity and how well the intervention fits within the classroom affect how teachers use it and highlight the need to develop school-based interventions that both appeal to the practitioner and improve child outcomes.
Autistic peer-to-peer information transfer is highly effective
Autism, Ahead of Print.
Effective information transfer requires social communication skills. As autism is clinically defined by social communication deficits, it may be expected that information transfer between autistic people would be particularly deficient. However, the Double Empathy theory would suggest that communication difficulties arise from a mismatch in neurotype; and thus information transfer between autistic people may be more successful than information transfer between an autistic and a non-autistic person. We investigate this by examining information transfer between autistic adults, non-autistic adults and mixed autistic-with-non-autistic pairs. Initial participants were told a story which they recounted to a second participant, who recounted the story to a third participant and so on, along a ‘diffusion chain’ of eight participants (n = 72). We found a significantly steeper decline in detail retention in the mixed chains, while autistic chains did not significantly differ from non-autistic chains. Participant rapport ratings revealed significantly lower scores for mixed chains. These results challenge the diagnostic criterion that autistic people lack the skills to interact successfully. Rather, autistic people effectively share information with each other. Information transfer selectively degrades more quickly in mixed pairs, in parallel with a reduction in rapport.Lay abstractSharing information with other people relies on the ability to communicate well. Autism is defined clinically by deficits in social communication. It may therefore be expected that autistic people find it difficult to share information with other people. We wanted to find out whether this was the case, and whether it was different when autistic people were sharing information with other autistic people or with non-autistic people. We recruited nine groups, each with eight people. In three of the groups, everyone was autistic; in three of the groups, everyone was non-autistic; and three of the groups were mixed groups where half the group was autistic and half the group was non-autistic. We told one person in each group a story and asked them to share it with another person, and for that person to share it again and so on, until everyone in the group had heard the story. We then looked at how many details of the story had been shared at each stage. We found that autistic people share information with other autistic people as well as non-autistic people do with other non-autistic people. However, when there are mixed groups of autistic and non-autistic people, much less information is shared. Participants were also asked how they felt they had got on with the other person in the interaction. The people in the mixed groups also experienced lower rapport with the person they were sharing the story with. This finding is important as it shows that autistic people have the skills to share information well with one another and experience good rapport, and that there are selective problems when autistic and non-autistic people are interacting.

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