Academic needs in middle school: Perspectives of parents and youth with Autism

Abstract

Youth with autism spectrum disorders (ASD) without intellectual disability frequently experience academic problems, in part due to executive functioning (EF) deficits. There are currently no evidence-based interventions targeting academic EF skills for middle school youth with ASD. An intervention is currently in development. This paper reports on a “proof of concept” uncontrolled trial of the intervention, and focus groups with parents and youth to inform tailoring and adaptation of the intervention. Results of the trial suggest high feasibility/satisfaction, but a need for further adaptation to promote uptake by youth with ASD. Results from the focus groups confirmed the need for an intervention targeting academic EF skills, successful strategies in use, and the need to promote increased youth independence.

Youth with autism spectrum disorders (ASD) frequently experience significant academic problems in a variety of domains (Nation, Clarke, Marshall, & Durand, 2004; Whitby & Mancil, 2009). Although higher cognitive abilities are associated with better academic performance (Wagner et al., 2003), students who have ASD without an intellectual disability (i.e., high functioning with an IQ>80) may still struggle academically (Keen, Webster, & Ridley, 2016) or perform below grade level relative to their IQ (Ashburner, Ziviani, & Rodger, 2010). Specific academic challenges in high functioning ASD may include writing (e.g., organizing content), reading comprehension (e.g., understanding how individual details contribute to a greater lesson, taking the perspectives of others), and math problem solving (Jones et al., 2009; Keen et al., 2016; Troyb, Orinstein, et al., 2014; Wolf, Thierfeld Brown, & Kukiela, 2009). While some of these academic struggles stem from key features of ASD (e.g., social-communication deficits, narrowly defined interests, concrete/literal thinking), they are also strongly linked to deficits in executive functioning (EF) such as organization, time management, prioritization, and initiation (DePaoli et al., 2015; Pennington & Ozonoff, 1996; Schall, Wehman, & McDonough, 2012; Troyb, Rosenthal, et al., 2014).

EF skills are critical for academic success. Students must be able to initiate tasks, perform multistep sequences of events, reflect, reason, plan and prioritize (e.g., complete different tasks for several subjects on time), sustain performance and complete tasks, be flexible in their thinking (e.g., select the learning strategy appropriate for each context), and monitor their performance (e.g., manage progress and check for mistakes; (Best, Miller, & Jones, 2009; Best, Miller, & Naglieri, 2011; Endedijk, Denessen, & Hendriks, 2011; Fisher & Happe, 2005). However, 35–70% of youth with high functioning ASD present with EF deficits (Blijd-Hoogewys, Bezemer, & van Geert, 2014; Gioia, Isquith, Kenworthy, & Barton, 2002; Kenworthy et al., 2005; Pennington & Ozonoff, 1996) including deficits in planning, flexibility, inhibition, shifting set, generativity, metacognition, and action monitoring (Fleury et al., 2014; Hill, 2004; Hill & Bird, 2006; Rogers, 1998; Ruble & Scott, 2002). Common challenges include difficulties getting started on tasks, managing distractions, planning for studying, multi-tasking, keeping materials organized, and prioritizing tasks (Wolf et al., 2009). Parents of youth with ASD also report difficulties fostering independent initiative for academic work (Endedijk et al., 2011; Hampshire, Butera, & Dustin, 2014). As a result, youth with ASD and their parents may struggle to acquire and manage critical academic behaviors (e.g., material organization, tracking assignments, homework completion, effectively studying, and breaking down large assignments) and experience significant homework issues (e.g., misunderstanding assignments) that are associated with EF deficits.

Persistent EF deficits are clear predictors of poor academic performance (Best et al., 2009; Best et al., 2011; Fisher & Happe, 2005) and poor outcomes in ASD (Clark, Pritchard, & Woodward, 2010; Wallace et al., 2016). There is a clear need for interventions targeting academic EF skills, including planning, organization, time management, and study skills, that lead to more successful outcomes in ASD (Buescher, Cidav, Knapp, & Mandell, 2014). Yet, according to the National Research Council and National Autism Center there are currently no evidence-based interventions targeting academic EF skills for youth with ASD (Whitby, 2013) despite similar interventions already existing for children with similar EF deficits (e.g., attention-deficit/hyperactivity disorder or ADHD). More specifically, we are not aware of any randomized clinical trials demonstrating the efficacy of EF interventions for middle-school youth with ASD.

Our team is in the process of developing an intervention that addresses academic EF skills for adolescents with high functioning ASD and their parents. Specifically, we are adapting an intervention currently utilized with middle school youth with ADHD (Ciesielski, Tamm, Vaughn, Cyran, & Epstein, 2015; Langberg, 2014) for middle school students with ASD. We opted to use an existing intervention with strong evidence of efficacy in improving academic EF skills, homework behaviors, and academic performance (Abikoff & Gallagher, 2008; Abikoff et al., 2013; Ciesielski et al., 2015; Evans, Axelrod, & Langberg, 2004; Evans, Langberg, Raggi, Allen, & Buvinger, 2005; Langberg et al., 2011; Tamm et al., 2015; Vaughn, Tamm., Loren, Ciesielski, & Cyran, 2014). These interventions emerged from growing recognition that many of the academic problems exhibited by children with ADHD may represent behavioral manifestations of poor EF (Pennington & Ozonoff, 1996), including problems with temporal and materials organization. For example, deficits in arousal, inhibitory control, delay tolerance, working memory, and time perception likely impede self-regulatory behaviors and interfere with organization and planning (Abikoff et al., 2013). Such deficits are manifested as forgetting to complete or losing homework assignments, difficulties planning for the completion of long-term projects and studying for tests, and problems keeping class materials organized (Langberg et al., 2011). Parents play an instrumental role in the implementation of these interventions given their daily interactions with the adolescent, including facilitating homework initiation and completion, reinforcement of desirable behaviors, and generalization efforts (e.g., (Langberg, Epstein, Urbanowicz, Simon, & Graham, 2008).

We hypothesized that the intervention would be appropriate for youth with ASD without intellectual disability given that conceptually (a) it is based on behavioral principles, which underlie many evidence-based interventions for ASD (Wilkinson, 2014); (b) there is significant overlap between the EF deficits evidenced by youth with ASD and youth with ADHD (Courchesne & Pierce, 2005; Kenworthy et al., 2005); and (c) it emphasizes the crucial role of the parent who confronts the daily academic and behavioral struggles that often come with rearing a student with ASD (Bearss et al., 2013). Including parents in the intervention is likely to a) increase generalization and maintenance of skills over time, b) improve quality of life by reducing parental stress, c) facilitate fostering youth independence and autonomy in areas such as homework and academic performance, and d) increase optimism regarding their ability to influence their child’s development which may help increase their ability to sustain efforts with their child over time (Ingersoll & Dvortcsak, 2006). However, a “proof of concept” trial with the intervention was warranted to test our hypotheses of underlying conceptual overlap and identify components that may need to be added or modified to address ASD-specific issues or difficulties (e.g., social communication, perspective taking, compliance, motivation).

We targeted middle school youth because the transition to middle school has been associated with numerous challenges including increased expectations for achievement/behavior, more rigorous grading policies, copious homework assignments, increased demands on organization and planning/time management (DuPaul & Stoner, 2003), learning that moves from rote tasks to abstract conceptual learning (Goldstein, Minshew, & Siegel, 1994) and, typically, a change from single to multiple classrooms and teachers (Adreon & Stella, 2001). The transition to middle school is also a natural time for parents and teachers to demand increased independence related to academic work for youth (Eccles, 2004). The majority of research with children with ASD has focused on the younger ages, with less attention to the transition issues and challenges they face as adolescents (Wong et al., 2015). This is problematic since the inclusion of students with disabilities into general education classrooms is a substantiated transition best practice (Schall et al., 2012). In fact, general education placement of students with ASD has increased at a rate faster than all other disability categories (Whitby, 2013). Further, as rates of inclusion for middle school students with high functioning ASD increase, teachers and para-educators do not typically have the support and training to implement evidence based treatment to meet their needs (Kurth & Mastergeorge, 2010). Specifically, most individualized education programs (IEPs) for students with high functioning ASD enrolled in inclusive education settings are more likely to focus on academic progress, but little research has been conducted on how to develop environments and utilize strategies and supports to facilitate academic success (Kurth & Mastergeorge, 2010). For example, one study showed that learning supports (e.g., teaching study skills) were provided to only 21% of students with ASD (Wei, Wagner, Christiano, Shattuck, & Yu, 2014), which supports the idea that academic interventions may be underemphasized for students with ASD in inclusive education settings. Given the prevalence of EF deficits co-existing through this transition, it is unsurprising that students with ASD have significant academic problems in middle school (Adreon & Stella, 2001; Mullins & Irvin, 2000). In fact, during middle school years, the academic performance of youth with high functioning ASD is approximately two to three years below their typical peers (Wagner et al., 2003).

We have been in the iterative process of refining the intervention for middle school students with ASD in the clinic setting, with future plans to run feasibility and larger open trials. In the present paper, we present the initial steps of treatment development including 1) an initial uncontrolled trial of the intervention with three youth with ASD as a “proof of concept” and test of feasibility/initial signal, and 2) separate focus groups with parents and youth with ASD to inform the tailoring of the intervention for youth with ASD and their parents.

Method

Participants

Youth with high-functioning ASD (i.e., IQ≥80) attending middle school and their parents were recruited to participate in the “proof of concept” uncontrolled trial (n=3) or the focus groups (n=9). All participants were recruited via letters, flyers, and emails targeted at individuals who had received services at a hospital outpatient clinic specializing in assessment and treatment of autism. All participants had a T-Score >60 (i.e., mildly elevated) on the Planning, Organization, or Monitor subscales of the Behavior Rating Inventory of Executive Function (BRIEF; (Gioia, Isquith, Guy, & Kenworthy, 2000) or Behavior Rating Inventory of Executive Function, Second Edition (BRIEF-2; (Gioia, Isquith, Guy, & Kenworthy, 2015) completed by a parent or teacher. Youth receiving pullout special education services for the majority of the day were excluded. A diagnosis of autism was confirmed using the Autism Diagnostic Observation Schedule, 2^nd Edition (ADOS-2) Module 3 (Lord et al., 2012) administered by a research reliable assessor (n=10) or a review of medical and educational records (n=2). An IQ ≥ 80 was confirmed using the Kaufman Brief Intelligence Test, Second Edition ((Kaufman & Kaufman, 2004) or Abbreviated Battery of the Stanford Binet Intelligence Scales, 5^th Edition (Roid, 2003). Parents completed a demographic questionnaire created by the study team to capture information regarding age, race, grade, income, etc. Youth demographic characteristics are provided in Table 1, and parent demographic characteristics are provided in Table 2.

Table 1.

Demographic Characteristics of Youth with ASD

	Uncontrolled trial (n=3)	Focus Groups (n=9)
Child Age	M=13.0, SD=1.00	M=12.4, SD=0.68
Child Gender	100% male	66.7% male
Child IQ	M=108.0, SD=28.8	M=99.33, SD=11.7
Child Ethnicity/Race
Non-Hispanic White	100%	44.4%
African American	0%	22.2%
Hispanic	0%	0%
Asian	0%	11.1%
More than one race	0%	22.2%
Child Grade
6th	0%	44.4%
7th	33.3%	44.4%
8th	66.7%	11.1%

Table 2.

Demographic Characteristics of Parents

	Proof of Concept trial (n=5)	Focus Groups (n=10a)
Parent Age	M=42.8, SD=2.48	M=42.0, SD=6.30
Parent Gender	80% female	70% female
Parent
Ethnicity/Race	100%	42.9%
Non-Hispanic White	0%	28.6%
African American	0%	14.3%
Hispanic	0%	14.3%
Asian
Family Income
<$30,000	0%	22.2%
$30,001-$50,000	0%	0%
$50,001-$70,000	33.3%	33.3%
>$70,000	66.7%	44.4%

^aAge/ethnicity data were not available for 3 parents

Procedures

Proof of concept uncontrolled trial.

Three middle school youth with ASD and their parents participated in the preliminary version of the intervention which was delivered in seven weekly, 90-minute group sessions. The intervention was offered weekly in the late afternoon at a local school in Cincinnati, OH, which youth did not necessarily attend. Two licensed clinical psychologists co-taught the intervention, one of whom was experienced in offering the intervention to children with ADHD (i.e., had taught more than ten courses of the Academic Success Group for ADHD). This latter psychologist took the lead on delivering the content of the intervention, and then during the practice/implementation aspect of the sessions, each psychologist walked around and served as a coach to parents and teens. Parents completed homework and EF ratings at the initial evaluation and last session. Parents and teens completed an acceptability of intervention questionnaire after each session. Participants were not compensated for completing the evaluations before and after the intervention nor were any incentives provided for attendance.

Intervention used in uncontrolled trial.

The Academic Success Group for ADHD (Ciesielski et al., 2015; Langberg, 2014) curriculum was somewhat modified to be more appropriate for ASD. For example, visual supports and schedules (Mesibov, Shea, & Schopler, 2005) were incorporated. Video clips from television comedies depicting parent-youth conflict over school-related activities were also utilized. The intervention involved teaching of academic EF skills using behavioral management (e.g., reinforcement, behavioral contract, when-then language, etc.) principles to promote increased independence related to academics. Sessions involved a homework review (from session two on) and a didactic component (power point, video clips, etc.) illustrating key concepts followed by an in-session practice of the concepts/strategies (e.g., parents and teens would work together to create a behavioral contract, flash cards, etc.) with coaching from the psychologists. Teens were assigned homework each session that comprised of additional practice with the content taught during group in the intervening week between sessions. Sessions included psychoeducation, behavioral contracting related to use of academic EF skills, problem solving, organization and time management, study skills, and planning for generalization and teen initiative. More details regarding session content are provided below.

Session 1: Understanding executive functioning.

This session was attended by parents and teens together. The goal was to orient them to the intervention and promote engagement. In particular, participants were oriented to what EF is and why it is important, and how the intervention will target EF deficits.

Session 2: Behavioral contracting.

This session was attended by parents alone. A brief discussion on the role of the parent in promoting individuation during adolescence with balanced assistance, was followed by discussion of the general principles of reinforcement, and the use of behavioral contracts.

Session 3: Behavioral contracts & problem solving.

This session, attended by parents and teens together, introduced behavioral contracts to teens. The five steps for problem-solving were reviewed to assist parents and teens in identifying behaviors to target with a behavioral contract. Parents and teens completed problem cards (identifying problems on individual cards and sorting to assist with prioritizing the problem to focus on for the behavior contract) and a brainstorming activity. Parents and teens then generated their own behavioral contract for use during the following week targeting problem identified during the session and incentive to earn.

Session 4: Homework activity system

This session, attended by teens and parents together, addresses organization and time management skills. First, the clinician briefly reviewed previous concepts including problem solving and how the behavioral contract was going. Coaching was provided as necessary to modify the behavioral contract. Then, the homework activity system was presented. Organization and time management skills were introduced in this context (scheduling time management, location/environment, and organizational systems). The backpacks of the adolescents were used to assess current organizational system and develop organizational skills. The appropriate use of a binder was also reviewed.

Session 5: Study cards and memorization strategies.

This session, attended by parents and teens together, addresses study-cards (flash-cards) and memorization strategies. After a review of content from previous sessions including coaching and problem solving as needed, study cards (i.e., using less than six words to define concepts) and memorization strategies (e.g., acronyms and acrostics) were introduced. Participants actively engaged in making study cards in session, as well as practicing memorization skills.

Session 6: Summarizing.

This session was attended by parents and teens together. After a review of content from previous sessions including coaching and problem solving as needed, summarizing strategies (e.g., detecting key points, storyboards, asking who/what/when/where questions, etc.) were introduced. Participants actively engaged in summarizing activity in session.

Session 7: Review, maintaining Skills, looking forward.

This session, attended by parents and teens together, was scheduled 4 weeks after session six, to allow parents and teens ample opportunity to use the skills taught in the intervention. During the session, the clinician assessed how the use of the study skills and behavioral contract were going and provided problem solving and consultation as needed.

Focus groups.

Youth with ASD and their parent(s) each attended separate two-hour focus groups offered during the evening. Two focus groups were held, one with nine youth and one with ten parents (seven mothers, three fathers; one child had both parents attend – all other parents were unrelated). Of note, the focus group conducted after the proof of concept uncontrolled trial was composed of a wider range of children and parents by age, sex, and ethnic/racial background. Focus groups were conducted by trained moderators (licensed clinical psychologists and psychology post-doctoral fellows). Focus group discussion guides (parent and teen) were developed in advance by the study team. Questions focused on academic challenges, successful and unsuccessful strategies for promoting academic success, teen motivators for school or homework, parent and teacher communication, and other influential factors (see Table 3 for full list of interview questions). All focus groups were video and audio-taped. Parents also completed the Parental Academic Assistance Survey to assess their perceptions of the academic support other teens with ASD may need and how much academic support they provide for their own teen. Participants were compensated USD $125 for participating in the focus groups.

Table 3.

Questions used in the Focus Groups

Parent Questions

Youth Questions

What academic problems does your teen have? What study strategies are helpful for your teen? What study strategies are not helpful for your teen? What do you use to motivate your teen related to school work? Describe your teen’s current study and homework behaviors. How do you communicate with your child’s school? What things make it difficult for your teen to be successful at school? Please provide feedback on the list of topics currently included in the intervention and let us know what, if anything, is missing (the parents were provided with a list of topics to respond to).

What is one easy and one difficult thing for you at school? What motivates you do so schoolwork? What do the words “negotiate,” “compromise”, and “contract” mean to you? How do you take notes at school? How do you study at home? What do your parents get on your case about related to schoolwork? What kinds of things do you need to work out with your teachers related to schoolwork?

Measures.

Proof of concept uncontrolled trial.

Children’s Organizational Skills Scale (COSS; (Abikoff & Gallagher, 2009): The COSS assesses organization and time-management skills. The COSS demonstrates strong psychometric properties. Internal consistency coefficients for the total sample range from .70 to .98, and 2- to 4-week test-retest reliability (Cronbach’s alpha) range from .88 to .99 (all correlations significant, p < .001). Support for the validity of the structure of the COSS forms was obtained using factor analytic techniques on derivation and confirmatory samples. Convergent and divergent validity were supported by examining the relationship between COSS scores and the Conners 3rd Edition™. Discriminative validity analyses were also supported by examining how accurately COSS scores discriminate between children from relevant clinical groups (e.g., ADHD). The COSS yields three factors measuring Memory and Materials Management, Organized Actions, and Task Planning. T-scores are generated for each subscale with scores >60 indicating a clinically significant problem.

Homework Problems Checklist (HPC; (Anesko, Schoiock, Ramirez, & Levine, 1987): The HPC is a 20-item parent-report instrument that is commonly used as a screening tool for and outcome measure of homework problems. For each item, parents rate the frequency of a specific homework problem on a 4-point scale (0 = never, 1 = at times, 2 = often, 3 = very often). The HPC has excellent internal consistency, with alpha coefficients ranging from .90 to .92 and corrected item-total correlations ranging from .31 to .72 (Anesko et al., 1987). Factor analyses indicate that the HPC has two distinct factors (Langberg et al., 2010; Power, Werba, Watkins, Angelucci, & Eiraldi, 2006) measuring homework completion behaviors (HPC Factor I) and homework materials management behaviors (HPC Factor II). These factors are consistent across general education and clinical samples. Higher scores on the measure indicate more severe problems.

Parent & Student Acceptability of Intervention Questionnaire (AIQ): This survey was created by the research team for the purposes of this study. Parents and youth provided feedback on a weekly basis on a 5-point Likert scale. Specifically parents and youth rated the effectiveness of the group (1= very ineffective to 5=very effective), the content of each session (1=not very useful to 5=very useful), the effectiveness of the slides, worksheets, visuals, and instructors (1=very ineffective to 5=very effective). Parents also rated how well they thought their teen had understood the content (1=not very well to 5=very well), and youth rated how well they understood attention and EF as well as the various study skills (1=not very well to 5=very well).

Focus groups.

Parental Academic Assistance Survey: This survey was created by the research team for the purposes of this study and was only completed by parents who participated in the focus group. Parents were first asked what percentage of parents they believed supported their child with ASD on tasks such as completing homework, organizing backpack, creating to-do lists, and then a series of questions regarding how much support they themselves provided for their teen in these domains.

Analyses

Proof of concept uncontrolled trial.

Attendance and satisfaction results were summarized. Effect sizes (Hedge’s g) comparing the mean COSS and HPC scores obtained at pre and post were computed correcting for small sample sizes using the formula g = (M1-M2)/SD*pooled x (N-3/N-2.25) × √(N-2/N) (Ellis, 2010). In general, Hedge’s g effect sizes are considered small (.20 to .49), medium (.50 to .79), or large (.80 and greater; (Ellis, 2010).

Focus groups.

Focus groups were transcribed verbatim. The key concepts analytic framework guided focus group coding (Krueger & Casey, 2015). Study leads (first and second authors), independently coded responses into one of three categories: major themes, minor themes, or other (i.e., off topic). Subsequent group meetings included consultation from a qualitative expert (last author) resulted in the final coding nodes. Focus group transcripts and coding nodes options were uploaded into an excel spreadsheet to aid in the coding process. Coding was conducted independently by three coders (two that attended the groups and one reliability coder). Final themes were derived via consensus at group meetings with the coders and qualitative expert. Descriptive statistics were used to summarize Parent Academic Assistance Survey ratings.

Results

Proof of Concept Uncontrolled Trial

Group attendance was excellent across the seven sessions (100%). On the AIQ Likert scale items (5 being best), parents gave high ratings for the effectiveness of the group (M=4.5, SD=0.7), the content of each session (M=4.4, SD=0.2), the effectiveness of the slides (M=4.3, SD=0.7), worksheets (M=4.4, SD=0.7), visuals (M=4.2, SD=0.9), and instructors (M=4.8, SD=0.5). However, parents gave lower ratings for how well they thought their teen had understood the content (M=3.4, SD=1.0). Youth themselves had generally low ratings for how well they understood their challenges with attention and EF (M=2.3, SD=1.2), how to use the study strategies (M=2.7, SD=1.3), how to use flash cards (M=3.0, SD=1.2), how to summarize (M=2.7, SD=1.2), how to use time management strategies (M=3.3, SD=1.2), and how to incorporate structured work systems into their homework routine (M=2.0, SD=0.7).

Improvements in parent ratings of academic EF on the COSS were observed, i.e., Memory and Materials Management (T=61±7 at pre, T=54±5 at post, Hedge’s g=.90), Organized Actions (T=71±9 at pre, T=64±13 at post; Hedge’s g=.54), and Task Planning (T=62±4 at pre, T=64±5 at post, Hedge’s g=.49). Parents also noted improvements on the HPC; i.e., Completion (M=37±2 at pre, M=31±12 at post; Hedge’s g=.61) and Management (M=15±6 at pre, M=12±1 at post; Hedge’s g=.74).

While these results are generally promising, the relatively low AIQ ratings, especially by teens, and the additional room for improvement on the COSS and HPQ indicate further revision of the intervention is warranted; thus focus groups were held to gather additional information.

Focus Groups

Six major themes emerged from discussions with both parents and youth with two themes unique to parents. Table 4 contains representative quotes illustrating each theme.

Table 4.

Focus Group Themes and Illustrative Quotes

Theme	Youth Quotes	Parent Quotes
1) EF is a Barrier to Academic Success
Difficulty Remembering	Not turning in homework	But it’s the fact that he – he’ll put it in his bag, and then when he gets to school, he won’t hand it in. Assignments weren’t getting turned in.
Organization / Planning	Getting things done on time Getting ready for school Not knowing when to do homework	So then I order the assignments. He has a job of unpacking backpack to get this planner out and this homework folder. And then I go through it and just verify with him what needs to be done tonight. They carry around these planners, but sometimes there’s nothing in her planner that week. So I don’t know there’s a science test on Thursday.
Paying Attention	Listening to people at school	For him, listening does not mean sitting in a chair. For him listening means pacing at the back of the room. If at any point during a lecture, he doesn’t understand what they are saying, then he completely shuts down.
Multitasking	Just do it in class as the teacher’s talking	can’t take notes and listen to the teacher … because she couldn’t keep up with how fast teacher moved
Self-Control/Inhibition	I’m the boss When I don’t do it, because I’m lazy	They have no flexibility. Once you mess up the schedule, it can come crashing down But he will not turn anything in if he doesn’t feel like doing it.
2) Expectations for Independence and Socialization Make Middle School Particularly Challenging	Not applicable	Some basic skills you feel are not being taught for your kids to be successful in life. You’ve gotta teach us or at least tell us ways to support those without intervening or doing them for them. Like, ways to make sure that we are supporting the strategies, um, you know, they’re gonna be going through, and that we can do the best to get them to reinforce them and help them.
Limited Abstract Thinking		And then, all of a sudden, in sixth grade when there’s abstract thinking and inferences, he’s struggling. So he’s reading at a sixth grade level, but his comprehension is at a third grade level.
Difficulty Understanding Social Inferences		But no he doesn’t understand social …he says, “Well if that kid did it, and he didn’t get in trouble. But if I do a certain behavior, they’re yelling at me.” Not being a part of the group affects his studies.
3) Individual Academic Challenges	Reading [most difficult subject] Math [most difficult subject]	I sit with him and help him do homework every night to make sure it gets done. Math, we’re a rocket scientist and, you know, he’s a superstar there. But language arts, we struggle in, So, it seems to be like there’s one area that’s a strength, and then one area that’s a weakness. We pretty much have to reteach everything that is being taught at school at home.
4) High Need for Parental Involvement	Homework is stressful extra time with Roku Money, rewards listening to music or email video games, TV, internet spending more time with family	I swear I’ve gotten her to do math problems or whatever by giving her an M&M… if she did good, we’d give her, you know, screen time, like Xbox. I tell her on Friday, you can spend- she earns a dollar a day for good behavior at school.
5) Challenges with Academic Accommodations	Not applicable	And she supposedly had intervention specialists in certain classes, but those were the classes where she was messing up the most. Assignments weren’t getting turned in, and you’re like, ‘What are you doing?’ I mean her executive skills were that poor and she wasn’t getting any help for it. Last year, we fought with the school where we were in it every month for the entire school year trying to get the IEP straight, and they just wouldn’t listen to us. We need to fill the gaps, I get that. But nobody’s talking about how great he is at this or pushing him even harder and faster in an area where – if you build his confidence there, maybe he’ll be able to, then, apply that or be more interested in these other things.
6) Critical Role for Teachers	Can give me more time to get homework done Explain work more Sheet showing when homework is due	You gotta stay on top, consistently for good communication. And if it’s not working, you go in, and you say, “Hey this isn’t working. What are we going to do about it?” And teachers will get frustrated with him. And then they’ll just turn off, and they won’t help him anymore. Teachers, they need to be more creative with kids with autism. I think teachers should be taught, themselves, how to deal with these moving kids.

Executive Functioning is a Barrier to Academic Success:

Overall, focus group results confirmed that EF deficits impact academic performance of youth with ASD. Both parents and youth agreed that the youth had difficulty with remembering to either do assigned homework or turn in completed homework, which then leads to missing assignments and negatively affects grades.

Organization was another prominent challenge noted by both youth and parents. Youth expressed that they have difficulties getting ready for school and with completing assignments. As a result, they use strategies to help them plan, prioritize and stay organized including calendars, reminders, and putting things in a specific place. Parents recounted that keeping an updated planner was vital to their teen succeeding at school. Some youth described success with the use of a mental checklist of due dates, while others reported needing to use calendars or checklists. Parents also reported that they provide varying levels of support to help their teen stay organized. Most youth required verbal reminders from teachers to complete assignments.

Youth and parents reported that difficulties paying attention also affect school performance. Youth related that they have difficulty listening to others, which gets them in trouble at school and at home. Parents agreed that their youth have difficulty listening and focusing and they must monitor their youth to ensure tasks are completed. When tasks require sustained attention (e.g., during a class lecture), youth often become overwhelmed or frustrated and “shut down,” which then leads to poor performance.

Parents noted that youth had difficulties with multitasking. If youth were expected to both pay attention and take notes, only one task would be completed. Additionally, youth reported difficulties at school and home related to a lack of inhibition and self-control (e.g., blurting inappropriate things out in class, working on homework when they should be listening to the teacher). Parents reported that youth respond best to established routines such as a specific time to complete homework. The need for breaks to decompress was also discussed.

Expectations for Independence and Socialization Make Middle School Particularly Challenging:

Parents reported that middle school is particularly challenging for their youth. As expectations for independence in the school environment increase, youth with ASD struggle due to their difficulties with organization and planning ahead. Youths’ difficulties with abstract thinking also interfere with academic success in middle school. Once concepts become more obscure and abstract, youth struggle and take a longer time to complete assignments, which may lead to them avoiding similar tasks in the future. Further, limited abstract thinking causes tension between parents and youth. Unlike other youth, parents reported that youth with ASD often fail to understand that grades are important for future achievements. This inability to connect academic performance with future life aspirations may make youth less apt to excel in school.

Parents expressed that youths’ limited ability to make social inferences also contribute to difficulties in middle school. If youth do not understand why other youth do not want to work with them (e.g., in small group projects), they may feel rejected by peers. This rejection can lower self-esteem and motivation to complete future group projects.

Youth with ASD Experience Individual Academic Challenges:

Each teen and parent reported that their teen had different academic challenges. While one teen might have difficulties with English, another would not have problems with English but would report problems with math. Across the groups, youth had difficulties with language arts, math, social studies, science, English, and spelling. Similarly, youth and/or their parents reported using a variety of study strategies including web study, teacher resources, repetitive fact review, reading over textbooks and notes, creating flash cards, and Quizlet.

High Need for Parent Involvement:

All youth and parents reported the use of external rewards to motivate youth to complete work and study for tests. Allowing youth to complete work on their own was not deemed a successful strategy. Parents and youth further reported that nagging or verbal reminders were similarly ineffective. Although formal behavioral contracts were not common, parents and youth reported use of verbal contracts that required youth to perform academic tasks prior to receiving some reward. In fact, youth had extremely negative reactions when shown examples of written behavioral contracts stating that they were “evil.”

Rewards varied by teen and included watching television, money, quiet time, music, email/internet, and video games. Only two youth reported some intrinsic motivation for academic success (e.g., going to college, getting a job); however, these youth expressed the reasons without any emotion as if they had been rehearsed or were general facts.

Challenges with Academic Accommodations:

A major theme for parents was that their youth were not receiving proper academic accommodations in middle school. Parents felt youth were either given too many, too few, or inappropriate accommodations (e.g., allowing the teen to use a calculator when they need to learn to multiply without a calculator, teen enrolled in a “study skills” class during the school day that did not actually address how to effectively study or do homework). The majority of parents also expressed dissatisfaction with the IEP team at their teen’s school stating that if their teen had high grades, then s/he would often not receive assistance with EF deficits (e.g., organization, planning and prioritizing). Parents reported high levels of frustration as the IEP team would often ignore parents’ concerns and sometimes refuse to meet with them. As a result, some parents changed their teen’s school in order to receive additional academic supports.

Critical Role for Teachers:

Parents and youth reported that the level and quality of teacher support had a significant impact on these youths’ academic success. Youth desired additional help and resources from teachers including homework reminders, study tools, and more in-depth explanations of some assignments. Parents reported that youth had more difficulties when teachers had negative attitudes. We hypothesize that these attitudes may have developed because not all teachers are equipped to manage youth with ASD, may not understand how EF deficits affect academic performance, and may benefit from learning to promote the skills taught in the group intervention (e.g., organization, problem solving, and study cards). In contrast, parents noted that when teachers were calm, patient, creative and persistent, youth were more successful.

Overall, parents reported a lack of consistent communication with teachers. They expressed disappointment that teachers sometimes ignored their advice about responding to their teen’s behavior. Parents felt that open communication among all involved in their child’s education [teachers, parents, aides, Individualized Education Program (IEP) teams] was necessary for success in middle school. A blend of in-person and electronic communication strategies was preferred.

Parent Academic Assistance Survey

Parents reported that they believed more than 60% of other parents of ASD youth were engaging in high levels of supports (e.g., actually doing homework, monitoring assignments, organizing materials), and themselves reported high rates of assistance of their teen (Table 5). Notably, more than 80% reported helping teens pack their backpacks and stay organized, as well as helping with homework including determining assignments, helping with completion, and closely monitoring homework. More than 60% reported helping with test studying.

Table 5.

Parent Academic Assistance Survey Results

Question	Response n = 9
1. What percent of parents do you think are actually doing some of the homework for their youth with autism?	60.6%
2. What percent of parents do you think monitor youth with autism closely in order to get youth to complete their homework?	68.9%
3. What percent of parents do you think created a to-do list for their teen with autism?	59.4%
4. What percent of parents do you think pack their teen with autism’s backpack for him/her?	60.6%
5. What percent of youth with autism need help taking notes at school (e.g., have a classmate take notes, get notes from the teacher)?	68.9%
6. Do you help with making sure your teen’s backpack is packed with all necessary materials before they go to school?	88.9% yes (n=8)
How often? (1=never, 2=1/week, 3=2–3/week, 4=everyday)	M=3.22, SD=1.09
7. Do you help you teen determine what homework assignments need to be completed each day?	88.9% yes (n=8)
How often? (1=never, 2=1/week, 3=2–3/week, 4=everyday)	M=3.33, SD=1.12
8. Do you help your teen complete homework assignments?	77.8% yes (n=7)
How often? (1=never, 2=1/week, 3=2–3/week, 4=everyday)	M=3.00, SD=1.07
9. Do you help your teen determine what tests that they need to study for?	62.5% yes (n=5)
How often? (1=never, 2=1/week, 3=2–3/week, 4=everyday)	M=3.00, SD=1.0
10.Do you help your teen study for tests?	66.7% yes (n=6)
How often? (1=never, 2=1/week, 3=2–3/week, 4=everyday)	M=2.67, SD=0.82
11.Do you help keep your teen organized (e.g., remind them to write things in their planner)?	77.8% yes (n=7)
How often? (1=never, 2=1/week, 3=2–3/week, 4=everyday)	M=3.43, SD=0.98
12.Do you have to check in on your teen when they are doing homework/studying to make sure they stay on task?	88.9% yes (n=8)
How often? (1=never, 2=1/week, 3=2–3/week, 4=everyday)	M=3.67, SD=1.0
13.Do you have to reward your teen for completing homework or studying?	55.6% yes (n=5)
How often? (1=never, 2=1/week, 3=2–3/week, 4=everyday)	M=3.33, SD=1.21

Discussion

Youth with ASD experience EF difficulties that significantly impact their academic performance. Effective EF-focused academic skills interventions exist, but must be adapted for use with this middle school population. Consistent with National Institute of Health treatment development guidelines (National Center for Complementary and Integrative Health, 2017), as a first step in adaptation, we conducted an initial uncontrolled trial of an academic EF intervention as a “proof of concept”, followed by focus groups to gain an in-depth understanding of both the unique academic challenges experienced by these middle school youth, and successful strategies utilized by youth and their parents. Results will guide the adaptation of the intervention which will be evaluated in a future open trial assessing feasibility and initial efficacy of the revised intervention.

Results of the uncontrolled trial suggest high feasibility. Family attendance was excellent and parents reported high satisfaction with the intervention. However, both youth and parents reported difficulties with teen comprehension of content. Parents reported that youth showed improvement in important EF skills including managing materials (organization), initiating activities, and planning and completing tasks. Although the sample size was very small, data suggests moderate to large effect sizes (Hedges g=.49 to .90) supporting further development of the intervention.

Consistent with the ASD literature (Courchesne & Pierce, 2005; Kenworthy et al., 2005), focus group results revealed that youth with ASD experience EF deficits in the areas of memory, organization, planning, attention, problem solving, impulse inhibition, and multi-tasking. These deficits are similar to those observed in youth with ADHD (Craig et al., 2016), and support the adaption of evidence-based ADHD-focused academic EF skills interventions for ASD. Given the amount of parental support typically provided to compensate for EF deficits, interventions targeting these concerns, although arguably beneficial to typically-developing youth, are essential for youth with ASD to succeed academically and to function independently. Furthermore, middle school youth with ASD also appear to respond well to strategies such as homework routines, verbal contracts, use of rewards for engaging in behaviors, use of calendars and planners, and reminders, which suggests that these components of ADHD-focused academic EF skills interventions might work well with this population. The current intervention curriculum instructs parents and youth in the use of written behavioral contracts in which the youth receive a reward when a strategy is successfully implemented (e.g., writing homework down in planner, starting homework at 3pm, making 5 study cards). The strong negative reaction to written contracts by youth suggests using another term than contract (e.g., “agreement”) may be more acceptable for youth and increase their buy-in to work on key academic EF strategies.

It is notable that EF deficits occur in the context of difficulties with abstract thinking and social inferences making the middle school environment particularly challenging for youth with ASD. The adapted intervention utilized in the uncontrolled trial used visual schedules, visual supports (e.g., flash cards), and video clips to increase youths’ ability to master the content. Yet, youth and their parents reported that youth had difficulty understanding all of the skills signifying the need for additional adaptation. Next steps include involving youth with ASD attending middle school in refining the intervention. Modifications such as increasing structure and predictability in delivery of treatment components, incorporation of additional visual aids (e.g., story boards), interactive activities to demonstrate concepts, increasing parental involvement, providing immediate feedback, directive teaching, modeling, consideration of the child’s special needs and interests, and other evidence-based teaching approaches for ASD (Fleury et al., 2014) will be considered to accommodate ASD characteristics and maximize benefit from intervention.

In the current curriculum, there is some focus on generalization and teen initiative specific to unique characteristics of middle school (e.g., increased independence); however, limited time is afforded to this topic. Notably, over 70% of parents reported providing high levels of support to their teen with skills such as determining what homework needs to be completed, staying on task, completing homework assignments, and packing one’s backpack. Thus, based on the significance of this issue for parents in the focus group, future iterations of the curriculum will devote more time to helping parents and youth manage increased expectations for independence and social maturity inherent in the middle school environment.

Youth with ASD may have good grades despite poor academic EF (e.g., do not turn in homework, fail to write down assignments, procrastinate, get distracted during homework) making it more difficult for school personnel to identify problems, in part due to parents’ role in supporting youth. The current intervention includes psychoeducation (overview of EF and treatment rationale) which helps parents and youth understand these skills and the impact on academic functioning. Study results reinforce the need for a school component to help teachers identify and address EF deficits in the classroom. Relatedly, parents of youth with ASD in this study reported overall dissatisfaction with academic accommodations in middle school; this is consistent with the literature (Wei et al., 2014), and suggests parents may benefit from an increased understanding of accommodations and supports that could be implemented at school to address their child’s EF difficulties. Parents discussed how their concerns are often dismissed by the school suggesting that they would benefit from learning strategies to improve parent-school communication. Interestingly, adolescents with ASD who do not have an intellectual disability and are mainstreamed in general education classrooms may experience challenges similar to those of “twice exceptional students” in that they may be “underserved” or denied access to appropriate educational opportunities because their unique strengths and difficulties are not understood by educators (see Beckmann & Minnaert, 2018 for a review). Thus, it may be important to incorporate content in the future intervention related to teaching parents strategies to communicate with educators more effectively (e.g., describing their child’s strengths and difficulties, discussing strategies that may be effective for targeting academic goals, etc.), and possibly some content to change educator’s perceptions.

This study is not without limitations. Participants were from one community and the sample size was small, limiting the generalizability of results, but appropriate for a feasibility study and focus groups. Furthermore the results are descriptive in nature. Focus groups were used to understand perspectives of youth and parents and although theme saturation occurred across parents and youth, within group theme saturation was not obtained. Relatedly, the majority of parents participating in the focus group were mothers, and thus the perspectives of fathers may have been underrepresented. The perspectives of school personnel including teachers and IEP team members were not included in the current study. Given the high level of parent dissatisfaction with middle school accommodations for their youth with ASD, it will be important to understand school personnel’s perceptions of these students’ academic functioning at school. Finally, treatment fidelity was not assessed during the open trial; given this is an important dimension of (a) feasibility/usability research (e.g., can this intervention be implemented as planned, what components are or are not feasibly implemented) and (b) efficacy research (e.g., important component of internal validity), future trials of this intervention will need to incorporate fidelity measures.

Consistent with the proof of concept question, both the intervention trial results and focus group data provide strong evidence that further development and adaptation of EF interventions in adolescence/ASD is a critically needed and under-researched area that is recognized by youth with ASD and their caregivers. Youth with ASD in middle school experience EF deficits that can be addressed when evidence-based interventions are adapted to meet their specific needs. Visual cues and prompts may assist youth with developing skills to manage these deficits but will not be sufficient to facilitate academic success. Youth will continue to need parental monitoring and involvement; however, strategies must shift to meet the expectations for independent functioning in middle school. Parents would benefit from strategies for communicating with school personnel about EF deficits as school personnel including teachers may underestimate the impact of these deficits and as well as the need for appropriate accommodations particularly if youth with ASD are making good grades.