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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 Answer Booklet | 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 Answer Booklet.

 
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The article above contains foundational information. Articles below contain optional updates.
What are we targeting when we treat autism spectrum disorder? A systematic review of 406 clinical trials
Autism, Ahead of Print.
The number of trials aimed at evaluating treatments for autism spectrum disorder has been increasing progressively. However, it is not clear which outcome measures should be used to assess their efficacy, especially for treatments which target core symptoms. The present review aimed to provide a comprehensive overview regarding the outcome measures used in clinical trials for people with autism spectrum disorder. We systematically searched the Web of KnowledgeSM database between 1980 and 2016 to identify published controlled trials investigating the efficacy of interventions in autism spectrum disorder. We included 406 trials in the final database, from which a total of 327 outcome measures were identified. Only seven scales were used in more than 5% of the studies, among which only three measured core symptoms (Autism Diagnostic Observation Schedule, Childhood Autism Rating Scale, and Social Responsiveness Scale). Of note, 69% of the tools were used in the literature only once. Our systematic review has shown that the evaluation of efficacy in intervention trials for autism spectrum disorder relies on heterogeneous and often non-specific tools for this condition. The fragmentation of tools may significantly hamper the comparisons between studies and thus the discovery of effective treatments for autism spectrum disorder. Greater consensus regarding the choice of these measures should be reached.
Self-reported motivations for offending by autistic sexual offenders
Autism, Ahead of Print.
Autism spectrum disorder is a neurodevelopmental disorder estimated to have elevated prevalence in forensic populations (approximately 4.5%). It has been suggested that offenders with autism spectrum disorder engage more frequently in crimes against the person and sexual offences than other types of offences such as property, driving and drug offences. To date little is empirically known about the reasons why autistic individuals engage in sexual offences, yet understanding the motivation(s) for offending are key to developing and implementing effective interventions to help reduce both initial offending and also re-offending. In this study, semi-structured interviews were conducted with nine autistic sexual offenders in prisons and probation services across England and Wales. Thematic analyses revealed five main themes (social difficulties, misunderstanding, sex and relationship deficits, inadequate control and disequilibrium). Analyses indicated that social skills difficulties, lack of perspective/weak central coherence, misunderstanding the seriousness of their behaviours and a lack of appropriate relationships were the main reasons for offending reported by this group of autistic sexual offenders. Findings highlight a need to develop sex and relationship education interventions which are tailored to the needs of autistic individuals, to address both their reported reasons for offending and their reported lack of sexual knowledge and awareness.
Acting on observed social exclusion and pro-social behaviour in autism spectrum disorder
Autism, Ahead of Print.
Humans are commonly motivated towards cooperation and prosociality. In this study, we examined this motivational predisposition in autistic individuals. Using an adaptation of the Cyberball paradigm, we investigated subsequent pro-social behaviour after witnessing social exclusion. Participants witnessed and played a series of Cyberball games, rated their affective state and valued emotional faces with respect to their approachability. Results showed that participants from both groups were aware of the social exclusion. However, while neurotypically developing participants engaged in pro-social behaviour in reaction to the exclusion, autistic participants showed less alterations, in terms of either behaviour or affective state. The current findings suggest a distinct motivational drive and processing of social reward stimuli in autism, which may result in behavioural responses divergent from typical development when engaging in the social world.
Self-reported social impairments predict depressive disorder in adults with autism spectrum disorder
Autism, Ahead of Print.
In adults with autism spectrum disorder, co-occurring psychiatric conditions are prevalent, and depression is one of the most common co-occurring disorders. This study examined the relationship between depression and cognitive ability, autism symptom severity, and self-reported social impairments in autism spectrum disorder. A total of 33 adults with autism spectrum disorder and 28 adults with typical development completed a standardized psychiatric interview, cognitive test, measure of clinician-rated autism symptom severity, and self-report of social impairments. Nine participants with autism spectrum disorder (27%) met the criteria for a depressive disorder (autism spectrum disorder + depressive disorder). Relatively more females with autism spectrum disorder had a co-occurring depressive disorder. The typical development group had a higher intelligence quotient than the autism spectrum disorder group, but the autism spectrum disorder + depressive disorder group did not differ from the typical development or autism spectrum disorder group. While the autism spectrum disorder + depressive disorder group had lower clinician-rated autism symptom severity than the autism spectrum disorder group, the autism spectrum disorder + depressive disorder group reported more social impairments than the autism spectrum disorder group. Self-reported social impairments predicted depression in adults with autism spectrum disorder when accounting for symptom severity and cognitive ability. These findings suggest that more self-perceived social impairments are related to depressive disorders in autism spectrum disorder, and may help clinicians identify individuals who are vulnerable in developing a co-occurring depressive disorder. Future directions include follow-up studies with larger cohorts and longitudinal designs to support inferences regarding directionality of these relationships.
Complex facial emotion recognition and atypical gaze patterns in autistic adults
Autism, Ahead of Print.
While altered gaze behaviour during facial emotion recognition has been observed in autistic individuals, there remains marked inconsistency in findings, with the majority of previous research focused towards the processing of basic emotional expressions. There is a need to examine whether atypical gaze during facial emotion recognition extends to more complex emotional expressions, which are experienced as part of everyday social functioning. The eye gaze of 20 autistic and 20 IQ-matched neurotypical adults was examined during a facial emotion recognition task of complex, dynamic emotion displays. Autistic adults fixated longer on the mouth region when viewing complex emotions compared to neurotypical adults, indicating that altered prioritization of visual information may contribute to facial emotion recognition impairment. Results confirm the need for more ecologically valid stimuli for the elucidation of the mechanisms underlying facial emotion recognition difficulty in autistic individuals.

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