A novel CBT focusing on planning skills for adolescents with ASD : a pilot study

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MASTER THESIS

DEPARTMENT OF PSYCHOLOGY

FACULTY OF SOCIAL AND

BEHAVIORAL SCIENCES

UNIVERSITY OF AMSTERDAM

A NOVEL CBT FOCUSING ON PLANNING

SKILLS FOR ADOLESCENTS WITH ASD

A PILOT STUDY

Student:

Anouck I. Staff

Student ID:

10003974

Department:

Developmental Psychology

Supervisor:

Bianca E. Boyer

Second assessor: Sebastiaan Dovis

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Master Thesis A.I. Staff University of Amsterdam 1 Contents Abstract 2 Introduction 3 Methods 6 Results 9 Discussion 13 References 16 Appendix 20

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Abstract

Background: Adolescents with Autism Spectrum Disorder (ASD) often show executive functioning deficits, related to impaired age-appropriate abilities to function independently in their lives. Moreover, executive functions are necessary for planning and organization of school- and homework. A treatment on improving planning and organizing skills could possibly diminish the problems these students have with their homework and stimulate their independency. Methods: In this pilot study, the effectiveness of a short-term planning skills focused Cognitive Behavior Therapy (CBT) was explored aimed to improve executive functioning in high-functioning adolescents with ASD. Eleven adolescents (12-17 years) with ASD followed the treatment. Pre- to posttest data were gathered on parent-rated executive functioning, planning and ASD. Moreover, to assess whether the CBT in its present form is suitable for adolescents with ASD and how the treatment should be adjusted to better serve the needs of these adolescents, qualitative analysis were conducted. Results: Adolescents did not improve from pre- to posttest on any outcome measure. However, both adolescents and parents evaluated the training positive and attrition was low. Qualitative analysis and evaluations of parents and adolescents showed that adding more repetition and involving parents as co-therapists could improve treatment. Conclusion: For now, effectiveness of this planning-focused CBT is not proved in this small sample of adolescents with ASD. The next step should be to adjust this treatment to the needs of this particular group and test its effectiveness in an large scale RCT.

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Master Thesis A.I. Staff University of Amsterdam

3 Introduction

An increasing number of children identified with Autism Spectrum Disorder (ASD, American Psychiatric Association, 2013) do not have a co-occurring intellectual disability (Nederlandse Vereniging voor Psychiatrie, 2009), labeled ‘high functioning’ (HFASD, IQ > 70, American Psychiatric Association, 2013). Despite their average intellectual and language abilities, outcomes remain poor. They continue to need help from others in order to function in daily life, and they will become independent only to a limited extent (Pugliese et al., 2015). However, during adolescence, adolescents have a desire to become more independent (Boyer, Geurts, & Van der Oord, 2014). At the same time, parents and teachers expect them to be more independent and scale back their assistance, especially when the transition to secondary school takes place. Adolescents are expected to independently plan long-term projects, study for tests, and complete and hand-in assignments for multiple classes and teachers (Evans et al., 2009). Also during adolescence, people face many changes in their daily lives and in their interaction with others. Their brains are developing rapidly, both sexually, cognitively, socially en emotionally (Schaffer, 2009). Specifically during secondary school, cognitive ability is more prompted, autonomy increases and the emotional and hormonal systems are overactive. These changes during adolescence, and specifically the transition to secondary school, greatly appeal to executive functions, especially planning skills (Evans et al., 2009). Planning is generally defined as ‘the process of formulating a sequence of operations intended to achieve a goal in an organized, strategic, and efficient manner’ (e.g., Hayes-Roth & Hayes-Roth, 1979). Executive functioning comprises multiple neurocognitive processes that are necessary for goal-oriented, efficient and socially adaptive behavior (Huizinga & Smidts, 2011; Lezak, 1995). Using executive functions, people are able to think ahead (planning), think flexible or shift (cognitive flexibility), store information in memory and suppress impulses (inhibition) (Huizinga & Smidts, 2011). In other words, executive functions are a set of processes that are necessary for goal-oriented behavior.

ASD is frequently associated with executive dysfunction (Kenworthy et al., 2009; Lopez, Lincoln, Ozonoff, & Lai, 2005; Reed, Watts, & Truzoli, 2013; Yerys et al., 2009). The core symptoms of ASD are: impairments in social communication and social interaction, and restricted interests and repetitive behaviors (American Psychiatric Association, 2013). Executive functions of typically developing children mature following a protracted course through adulthood, so that individuals are increasingly able to regulate their emotions and their behavior and adapt to their (social) environment (Diamond, 2012). Near the end of adolescence or the beginning of adulthood of typically developing individuals, executive functions are fully developed (Diamond, 2012). However, the developmental trajectory of executive functions in children and adolescents with ASD is slower than for children and adolescents without ASD, and their executive functions often remain impaired until adulthood (Rosenthal et al., 2013). Whilst, as discussed earlier, during adolescence the expectations of adults about the independence and the capacities of adolescents concerning executive functioning, increase. The gap between the expectations of parents and teachers on the one hand, and the actual level of executive functions of secondary school students with ASD on the other hand, increases when they become older (Rosenthal et al., 2013).

To date, two of the best-known cognitive theories about ASD behaviors are the theories about a deficient ‘theory of mind’ and ‘central coherence’ (Happé, 1999). The Theory of Mind (TOM) proposes that individuals with ASD are not capable of putting things in perspective, or to attribute mental states like intentions, desires, opinions and emotions to themselves and others (Baron-Cohen, Leslie, & Frith, 1985). According to the ‘central coherence’ theory, in ASD processing of stimuli occurs in a fragmented way, with a focus on details instead of integrating and interpreting stimuli in their context as whole (Happé & Frith, 1996). However, neither theory explains the repetitive behaviors and restricted interests that are often observed in ASD (Hill, 2004). Increasingly, the hypothesis about poor executive functioning is being studied (Johnson, 2012). This theory explains ASD-symptomatology on the basis of executive dysfunction. While previously the academic focus was on finding out which of the three above-mentioned theories could best explain the ASD core symptoms, it has recently been suggested that a combination of impairments in these three cognitive domains, rather than one single theory, could explain the deficits in ASD (Happé, Ronald, & Plomin, 2006). Nevertheless, several

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longitudinal studies show that children with ASD without intellectual disability (IQ > 70, American Psychiatric Association, 2013) as a group show impairments on all three domains. However, on an individual level they do not show this specific cognitive profile (Pellicano, 2010). Each child with ASD demonstrates impairments on some of the domains (theories) but not always on every domain.

Johnson (2012) suggests that executive dysfunction is underlying the two best-known cognitive domains - TOM and central coherence. For example, monitoring is a key component of executive functioning (Anderson, Jacobs, & Anderson, 2008). Monitoring someone’s behavior and intentions (TOM) is essential to attribute mental states to oneself and others (Pellicano, 2012). Impaired cognitive flexibility, also a component of executive functioning (Anderson et al., 2008), is expressed in perseverative and stereotypical behavior and makes it harder to switch one’s attention and to adapt to a changing situation (Hill, 2004). Hence, executive functions seem to underlie the most important theories (and associated symptoms) of ASD and could also explain the restricted interests and repetitive behaviors, which the other previously discussed theories cannot. Therefore, this study will build on the hypothesis that executive dysfunction explains the three core symptoms of ASD, at least partially.

According to the deficits in executive functioning in ASD (Kenworthy et al., 2009; Lopez et al., 2005; Reed et al., 2013; Yerys et al., 2009) and the importance of executive functions in adolescence (Evans et al., 2009), decreasing executive functioning problems in adolescents with ASD seem to be crucial to improve their functioning in daily life and therefore possibly increase their independence. Since most of these adolescents leave secondary school with a limited degree of independence and still need the support of their family members and specialized institutions (Henninger & Taylor, 2012; Howlin, Goode, Hutton, & Rutter, 2004), school could be an appropriate setting to teach and improve these skills. A promising way to improve independence in individuals with ASD includes teaching them to self-manage (Axelrod, Zhe, Haugen, & Klein, 2009). A logical venue for teaching these skills is through the routine of homework, because homework is a naturally occurring learning opportunity for developing planning and organizing skills (Hampshire, Butera, & Dustin, 2014). Both students with and without ASD show a negative relationship between their levels of executive functioning and homework difficulties (Endedijk, Denessen, & Hendriks, 2011). However, the problems reported by students with ASD and their parents with respect to planning, organizing and making homework are more significant than the problems reported by students without ASD and their parents (Endedijk et al., 2011). Being able to deal efficiently with homework seems to be (at least partially) dependent on the levels of planning skills of a student (Endedijk et al., 2011). Students with ASD generally show impairments in executive functioning, which are necessary for planning and organization. Deficits in these skills are related to the ability to complete tasks, which in turn are crucial to achieve goals and function independently at secondary school (Fisher & Happé, 2005). Therefore, improving planning and organizing skills appear to be a meaningful way to stimulate the development of independency, both in school and daily life, in this population.

Existing treatments for ASD assume that ASD is a disorder that cannot be cured. Therefore, treatment is focusing on minimizing symptoms rather than on curing the disorder altogether (Van Rooijen & Rietveld, 2013). The number of treatments for children and youth with ASD has been rapidly increasing but research into the effectiveness of these treatments is lacking almost completely (Nederlandse Vereniging voor Psychiatrie, 2009). Only the effectiveness of early interventions focusing on improving the development of reciprocity and language skills in young children has been somewhat showed (Nederlandse Vereniging voor Psychiatrie, 2009). Nevertheless, psycho-education is considered to be essential in every treatment for ASD (Nederlandse Vereniging voor Psychiatrie, 2009). Moreover, psychotropic medication is mainly effective in the treatment of co-existing symptoms of ASD, like hyperactivity, concentration disorders, compulsive thoughts and compulsions, anxiety- and mood disorders, aggression and self-injurious behavior. It is advised to treat the symptoms that are the most significant causes of dysfunctioning. Preferably, treatments that tackle multiple symptoms are chosen (Nederlandse Vereniging voor Psychiatrie, 2009). Regarding school functioning, the Dutch Board of Health (2009) states that most students with ASD need at least one form of assistance in high school, mainly focusing on planning and structuring their schoolwork. The extent to which help is needed, varies by student and school, however the overarching goal should be that the impairments in

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5 functioning decrease. To our knowledge, to date there are no specific interventions providing this kind of help for HFASD-students.

Cognitive Behavioral Therapy (CBT) is a widely used therapy for ASD despite little evidence regarding efficacy (Van Rooijen & Rietveld, 2013). Nevertheless, the applicability of CBT for ASD has increased in recent years (Schellingerhout, Ramakers, Derwort, & Van de Lavoir, 2010). It has been showed repeatedly that CBT is effective in treating children and adolescents with ASD without cognitive impairments, for example in reducing anxiety and anger and improving social skills deficits (Bauminger, 2002; Sofronoff, Attwood, Hinton, & Levin, 2007; White et al., 2010; Wood et al., 2009). However, it appears that most CBTs need modification to be successfully applicable to these clients (Moree & Davis, 2010; Rotheram-Fuller & MacMullen, 2011). For example, CBT should include psycho-education, techniques to improve coping skills and cognitive restructuring techniques (Schuurman, 2013). The typical behaviors of individuals with ASD should be kept in mind and the therapist should lower the pace of sessions, offer more structure and keep the expectations clear. Moreover, the treatment should include visual support and motivational techniques. Furthermore, as previously mentioned, applying acquired skills to different settings is very hard for individuals with ASD (Hume, Playnick, & Odom, 2012). Involving someone’s social environment is important to accomplish generalization of the learned skills (Schuurman, 2013): parents could therefore play an important role as co-therapist in CBT because they can increase generalization by stimulating planning and improving independency of a student at home, in addition to the school environment (Hampshire et al., 2014). Treatment for students with ASD should focus on developing routines, wherefore organizing skills increase (Hampshire et al., 2014). Moreover, treatment attrition in children and adolescents with ASD is high (Johnson, Mellor, & Brann, 2008), wherefore treatment should also focus on keeping them motivated for completing treatment.

Because of the lack of treatment studies in adolescents with ASD, this study will be an initial impetus to examine the effectiveness of an intervention to diminish executive functioning problems in adolescents with ASD: ‘Plan My Life’ (Kuin, Boyer, & Van der Oord, 2013). Plan My Life is a CBT, aiming at improving planning and organizing skills, which are necessary in the daily life of adolescents, including special attention for school- and homework (Boyer, Geurts, Prins, & Van der Oord, 2015). In a large multi-site randomized clinical trial (RCT) adolescents with ADHD showed improvements with large effect sizes between pre- and posttest on several outcomes, including ADHD-symptoms, planning skills and executive functioning in general. In addition, these effects are maintained until one year after treatment (Boyer et al., 2015). Because adolescents with ASD also suffer from impairments in planning and organizing, which even appear to be larger than in ADHD (Hill, 2004), the current pilot studies the effectiveness of Plan My Life in adolescents with ASD.

The first research question was therefore whether executive functions in general, and planning skills in particular, of adolescents with ASD improve from pre- to posttest. Based on the RCT by Boyer et al. (2015), we expected reduction of executive functioning problems and planning problems in adolescents with ASD. Exploratory analyses will be conducted on other components of executive functioning, like for example shifting and monitoring. Because ASD is a life-long disorder (Gezondheidsraad, 2009), ASD-symptoms are not expected to fade out after completing treatment. However, ASD-symptoms related to impairments in executive functioning could decrease. For example, the ability to adapt to a changing situation could improve when planning skills have developed more. The second research question is therefore whether ASD-symptomatology changes from pre- to posttest.

Because Plan My Life is originally developed for adolescents with ADHD, the treatment could possibly not be fully applicable to adolescents with ASD. Therefore a qualitative analysis will be used to study how the content of the therapy in its current form, should be adjusted to be more suitable for adolescents with ASD.

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Methods Participants

This study was presented to parents, adolescents, schools and (mental) health care institutions as a pilot study to determine the effectiveness of Plan My Life for adolescents with ASD. Schools and specialized services for individuals with ASD attended parents and their children (usually by e-mail) to the possibility of participating in this study. Adolescents and their parents then applied for the study themselves. For inclusion in the study, adolescents had to meet the following criteria: (1) a prior DSM-IV-TR (American Psychiatric Association, 2000) or DSM-5 (American Psychiatric Association, 2013) ASD diagnosis by a child psychiatrist or certified psychologist, (2) aged between 12 and 17 years old, (3) attending secondary school, (4) sufficient understanding of the Dutch language (adolescents and parents), (5) sufficient intelligence to understand the treatment. Even though this was not confirmed using an intelligence test, intelligence was estimated by the education level of the school the adolescents are attending: this had to be at least the average level of Dutch high school when the IQ was not previously measured (Kaldenbach, 2007). Specifically, the sample of this study consists of HFASD-students.

Procedure

The study was approved by the Ethics Committee of the University of Amsterdam (2015-DP-4105). After adolescents and their parents applied for the study, inclusion criteria were checked with a telephone call with one of the parents. Before pretest, both parents and the adolescent gave their written informed consent. Pretest took place a week before treatment. Parents filled in two online questionnaires: the Dutch version of the Autism Spectrum Quotient – Adolescent Version (Hoekstra, Bartels, Cath, & Boomsma, 2008) and the Behavior Rating Inventory of Executive Function (Smidts & Huizinga, 2009). These will be explained later on. Thereafter, treatment started. Treatment took place in an outpatient mental health clinic. Posttest took place within a week after treatment, also online by parents. In addition, both parents and adolescents filled in an evaluation form to evaluate the treatment. Adolescents evaluated treatment after the last session of treatment, parents evaluated treatment as part of the posttest.

The participating therapists met twice to discuss the treatment process in general and the elements of every single session. It was discussed how the treatment could be improved to be better suitable for adolescents with ASD.

Measures

Outcome measures

Outcomes were collected on three domains: (1) executive functions, (2) planning, (3) ASD. Using exploratory analyses, other aspects of executive functioning were studied in addition. All outcome measures are parent-rated.

Parent-rated executive functioning and planning. The Dutch version of the Behavior Rating Inventory of Executive Function (BRIEF, Smidts & Huizinga, 2009) was used to examine problems regarding executive functioning. The BRIEF is a normative behavioral rating scale for children 5 to 18 years old, designed to elicit everyday executive functioning as observed by the parents in natural everyday environments. The internal consistency, the test-retest stability, and convergent and discriminant validity of the Dutch version of the BRIEF are considered good (Huizinga & Smidts, 2011). The BRIEF consists of 75 items of which each items pertains to specific everyday behavior, relevant to executive functions, measured by a 3-point Likert scale (1 = never, 2 = sometimes, 3 = often). The items of the BRIEF are categorized into eight clinical scales: Inhibit, Shift, Emotional Control, Initiate, Working Memory, Plan/Organize, Organization of Materials, and Monitor. In this study, the total score and Plan/Organize scale were used. The total score is a summary score that

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7 includes all eight clinical scales. The Plan/Organize scale measures the adolescent’s capacity to anticipate future events, set goals, develop appropriate steps to carry out associated tasks or actions, and manage current and future-oriented task demands. All other subscales are analyzed exploratory. Higher scores on the BRIEF subscales indicate more executive function problems.

Parent-rated ASD. The Dutch version of the Autism Spectrum Quotient – Adolescent Version (AQ, Hoekstra et al., 2008) was used to measure ASD symptoms. The AQ consists of 50 items of which each item pertains to specific everyday behavior, relevant to ASD symptoms, measured by a 4-point Likert scale (1 = definitely agree, 4 = definitely disagree). The total score is used as an outcome measure. Higher scores indicate more ASD symptoms.

Evaluation of treatment

Parents and adolescents evaluated their treatment at posttest. Parents were asked to rate treatment on three 5-point Likert scales, and adolescents on five 5-point Likert scales. For both parents and adolescents, a higher score indicated a more positive evaluation. Besides, both parents and adolescents were asked open-ended questions to evaluate treatment. Parents and adolescents were asked: (1) which part of the treatment they thought was best, (2) which part or subject they have missed in treatment, (3) what recommendations they have to improve treatment, (4) what behaviors are improved after treatment, (5) what behaviors were not improved, although they had expected this to improve. Moreover, parents and adolescents were asked whether they would recommend treatment to other adolescents with ASD (and their parents).

Treatment

Plan My Life (Kuin et al., 2013) is an individual CBT, originally developed for adolescents with ADHD, aimed at improving their planning of school- and homework. The treatment consists of eight weekly adolescent sessions and two parental sessions (between adolescent session 2 and 3, and between adolescent session 5 and 6) of 45-60 min. The adolescent and therapist used a workbook. According to this workbook, a planning skill focused subject was discussed in every session.Several planning- and organization strategies (such as a to-do list, using an agenda) were presented to the adolescent, of which he/she could compose the strategies he/she wanted to try the following week. Besides presenting new strategies, strategies that had been tried during the past week were evaluated. Successes, possible room for improvement, and associated cognitions were discussed and whenever needed, negative thoughts about strategies were challenged and helping thoughts formulated. Motivational Interviewing is an important element of the training, aiming to both motivate the adolescent and to emphasize their autonomy. The therapist collaborates with the adolescent rather than taking an expert role. They evoke and elicit reasons and concerns about change together instead of imparting advise (Boyer et al., 2015; Kuin et al., 2013).

Two parental sessions were aimed at finding a balance between keeping control of their child and letting go, by discussing which parenting goals were worth the struggle. Next, parents were taught how to formulate and implement rules in the household and how to facilitate positive communication with the adolescent (Boyer et al., 2015; Kuin et al., 2013).Besides the two parental sessions, parents are involved because they have to agree with the adolescent about a reward the adolescent could earn. The adolescent got the reward from their parents (e.g., doing an activity with their friends or family, choosing desert for a week or getting a present), when they attended all treatment sessions.

Therapists

All three therapists worked at the same mental health care clinic. They were all experienced in providing the treatment and two of the therapists were also authors of the treatment. Therapists were blind for the results but not for the aim of the study. The number of adolescents treated by the therapists was variable (M = 3.7; SD = 1.2; range = 2 – 5).

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Statistical analyses Missing data

On pretest two parents filled in the shortened version of the AQ, whilst we used the longer version. Therefore these missing parent scores were imputed using stochastic regression, with demographic variables and baseline scores of the BRIEF scales as predictors (Baraldi & Enders, 2010). These missing data were not related to any subject characteristic.

Treatment outcomes

Intent-to-treat analyses were conducted. The effects of the treatment were investigated on three domains: (1) executive functions, (2) planning, (3) ASD. All were analyzed using a paired-samples t-test comparing pre- to postt-test. To prevent type I error, Bonferroni correction was used, resulting in an alpha of 0.05/3=0.017. Because executive functioning problems and planning problems are expected to improve, these comparisons will be one-tailed. There are no specific expectations in regard to the effects of treatment on ASD symptoms, therefore this will comparison will be two-tailed. The other seven subscales of the BRIEF were analyzed exploratory using paired-samples t-tests comparing pre- to posttest.

Treatment evaluation

Adolescent and parent evaluations of treatment were investigated calculating average grades and summarize their answers to the open-ended questions. Therapist evaluations of treatment were investigated through qualitative analysis. These meetings were analyzed through qualitative analysis by Atlas.ti.

Power analysis

Power analysis was conducted in G x power. Based on research with adolescents with ADHD (Boyer et al., 2015), we expected adolescents to improve when receiving Plan My Life, with large effect sizes (ηρ2 = 0.172). Therefore, we needed a total of 17 adolescents for sufficient power (alpha level = 0.017, power = 0.8). However, because the current study is a pilot study, power analysis is not applicable.

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9 Results

Sample description

One adolescent dropped out after the third session because social problems were predominant rather than planning problems. The sample seemed reasonably representative for the broader group of adolescents with ASD (Table 1): 30-50% of adolescents had co-existing ADHD (Simonoff et al., 2008; Sinzig, Walter, & Doepfner, 2009) and 80% of the adolescents were boys (Centers for Disease and Control and Prevention, 2012). However, fewer adolescents were using medication (Coury et al., 2012), age of diagnosis was somewhat higher (Begeer, Wierda, & Venderbosch, 2013), and more adolescents were attending special education and education on a high level (Begeer et al., 2013). Table 1 Sample description

ADHD attention deficit hyperactivity disorder, ASD autism spectrum disorder,

PDD-NOS pervasive developmental disorder – not otherwise specified, PML plan my life T-score BRIEF: T ≥ 65 indicates clinical significance

Treatment outcomes Treatment effects

Our first research question was whether executive functioning skills, planning skills and ASD symptoms of adolescents with ASD improve from pre- to posttest. Results are shown in Table 2. Analyses showed a consistent pattern: on all three domains, paired-samples t-tests showed no significant improvement over time, all with small effect sizes. Indicating that executive functioning- and planning skills do not improve during treatment. Also there was no statistically significant change in ASD symptoms from pre- to posttest.Exploratory analyses on the other seven subscales of the BRIEF

PML (N = 11) M/N SD/% Age in years 14.2 1.6 Gender (N boys) 9 81.8 Education type Regular education 2 18.2 Special education 9 81.8 Education level Low 1 9.1 Average 1 9.1 Higher 8 72.7 Highest 1 9.1

DSM-IV ASD diagnosis

Autistic disorder 2 18.2 Asperger’s disorder 4 36.4

PDD-NOS 5 45.5

Age when diagnosed 8.0 2.9 Clinical comorbidity N ADHD 5 41.7 N tic disorder 1 8.3 N dyspraxia 1 8.3 Medication status No medication 8 72.7 N methylphenidate 2 18.2 N antipsychotics 1 9.1 Number of sessions 9.7 .95 N adolescent 8.1 .88 N parents 1.6 .97 Executive functioning at baseline (BRIEF) T total score 64.18 7.35 T Plan/Organize scale 61.18 8.11

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showed comparable results: none of the executive functions neither improved nor decreased from pre- to posttest.

When looking at the group as a whole, both executive functioning problems and planning problems are not clinical significant on pretest, indicating no problems regarding executive functioning and planning in this sample according to their parents. However, 6 adolescents did have a clinical significant score on the total score and 5 adolescents did have a clinical significant score on Plan/Organize scale at pretest. To study whether adolescents that did have clinical significant scores on the total score or Plan/Organize scale at pretest would improve from pre- to posttest, exploratory analyses were conducted. Analyses again showed no improvement on both executive functioning problems and planning problems from pre- to posttest.

Table 2 Results of paired-samples t-tests comparing pre- to posttest

Scores Results

Pre Post Time

Domain M SD M SD t d

Executive functioning problems 159.27 18.59 157.91 16.87 t(10) = .39 0.12 Planning problems 27.18 4.14 27.91 3.96 t(10) = -.80 0.24 ASD symptoms 138.27 11.69 141.24 18.19 t(10) = -.62 0.19

ASD autism spectrum disorder

Cohen’s d effect size: 0.2 is small, 0.5 medium, 0.8 large Treatment evaluation

Parents evaluated Plan My Life in general positive (M = 3.91, SD = 1.04), and also rated the approach that is being used as positive (M = 4.09, SD = 1.22). They are neither positive nor negative about the benefits their child will have from the training in the future (M = 3.18, SD = 1.08). Of the parents 45.5% would recommend the training to other parents of adolescents with ASD, 45.5 % is not sure about whether to recommend it or not and one of the parents (9.1 %) would not recommend the training. On the open-ended questions, parents mentioned the collaboration with the adolescent and teaching strategies for doing homework, setting priorities and planning as positive aspects of the training. Their children are more aware of planning and the advantages of planning their homework, as a result of the training, and independency increased somewhat. However, they also report actually making a homework planning for the coming week with the adolescent as an aspect they have missed. Parents suggest to add repetition to the sessions and to collaborate more with the parents, to make sure parents know what appointments the adolescent and trainer have made for the coming week. They had expected their children to be more independent and feeling more responsible for doing their homework after finishing treatment. Moreover, they had expected longer lasting effects.

The adolescents evaluated Plan My Life in general very positive (M = 4.80, SD = .42), are satisfied with the training (M = 4.60, SD = .52), and liked to do it (M = 4.10, SD = .57). Also, they evaluated the training as being useful for them (M = 4.70, SD = .48). The workbook was rated equally positive (M = 4.10, SD = .99). Of the adolescents 80.0 % expect to benefit from the training in the future, 20.0 % is not sure about this. 90.0 % of the adolescents would recommend the training to others, 10.0 % isn’t sure about this. On the open-ended questions, adolescents consider setting goals, learning how to plan their homework and making a planned approach to partition big problems into smaller ones, as the best parts of the training. Most of them have not missed any topics in the training but some reported missing a booster session to maintain the taught strategies. According to the adolescents, their planning of schoolwork, doing their homework independently and starting to make their homework after getting home from school, improved after finishing treatment. However, adolescents had expected to panic or become angry less often and be more independent in regard to packing their bags and checking their homework-app. They suggest improving the training by adding colors and less childish cartoons to the workbook, more space to write in the workbook and using timetables for planning.

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Qualitative analysis

The main aim of the qualitative analysis was to study the extent to which Plan My Life, in its present form, is applicable on adolescents with ASD and how the training has to be improved to better serve the needs of adolescents with ASD. Regarding to the meetings with the therapists and the evaluations of parents and adolescents, there are some general recommendations that can be made.

As expected, developing routines and repeating them frequently seems to be important for the adolescents to acquire the taught skills (Hampshire et al., 2014). During the sessions, the adolescent and therapist have to build a framework for the adolescent, in which is described step-by-step what the adolescent is going to do after getting home from school. It has to be build earlier on in the sessions than it is now, so that repetition is possible. Due to repeatedly practicing the skills, the adolescent acquires and internalizes the strategies and develops routines.

Moreover, matching our expectations, parents have to be a co-therapist during and after completing the training to offer the taught structure at home and improve generalization of the strategies (Hampshire et al., 2014; Hume et al., 2012). Parents have to be involved in every session, to make clear what the adolescent is going to practice in the coming week and how the parent will help. Almost all sessions of training were with the adolescent and parent together, at least partially, whereas for adolescents with ADHD this is not necessary. The treatment has to consist more booster sessions to sustain and improve the generalization of the learned skills.

Becoming fully independent seems to be less plausible for this sample because of the difficulties they experience in changing situations, due to their limited cognitive flexibility (Huizinga & Smidts, 2011). Adapting to change is difficult and often involves frustration (anger or panic). Parents need to give (or keep giving) assistance to the adolescent by providing structure to make situations more predictable and decrease the emotions of the adolescent. Being able to regulate emotions better is not an aim of this treatment, though.

Also, due to limited abilities to reflect on their own behavior (Rosenthal et al., 2013), cognitive restructuring techniques are difficult for adolescents with ASD. Although this is not suggested by previous literature (Schuurman, 2013), therapists noticed that compared to adolescents with only ADHD, they had to give instructions rather than discuss possible solutions for a homework problem of the adolescent. The therapeutic attitude needs to be more direct and firm, compared to adolescents with ADHD.

However, the intrinsic motivation of adolescents with ASD is higher compared to adolescents with ADHD, wherefore Motivational Interviewing is less important for these adolescents, and they do not need a reward for completing training. This does not correspond to earlier studies (Schuurman, 2013). Adolescents with ADHD seem to know how to plan their homework but do not do it without extrinsic motivation, whereas the adolescents with ASD do not seem to know how to plan their homework but are motivated to learn this.

At last, there are some aspects regarding both the wording and the language used in the workbook that are different in ASD comparing to ADHD. More specific, adolescents with ASD suffer deficits in understanding and use of gestures and often take language literally (American Psychiatric Association, 2013). Which implies that, for example, goals have to be formulated in first person, so that the adolescents can take over the goals literally. Also, there can only be one question asked at a time. If there are more questions formulated in the workbook, they have to be presented on separated lines.

Specific recommendations for treatment revision are shown in Table 3. Evaluations of every single session are shown in Appendix A (in Dutch).

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Table 3 Recommendations for treatment revision Topic Conclusions

ASD compared to ADHD

Adolescents with ASD do not know how to plan their homework but are motivated to learn this, whereas adolescents with ADHD know how to plan their homework but do not do this without extrinsic motivation. Parents of adolescents with ASD are more involved in (planning) the adolescent’s home- and schoolwork. Because of the necessary involvement of parents in planning, the session with a friend is not applicable on adolescents with ASD.

Adolescents with ASD need more repetition to acquire the skills offered.

Dealing with change is one of the biggest struggles for adolescents with ASD in their daily life due to their limited cognitive flexibility.

Involvement of parents

The final 15 minutes of every session should be with the parent and adolescent together. It will then be discussed what strategies the adolescent is going to practice in the coming week and how the parent could help the adolescent.

The aim of both parental sessions will be finding a balance between keeping control of their child and letting go. Parents have to learn how they could support their child at home with the strategies learned during the training.

Teaching parents how to formulate and implement rules in the household and facilitate positive communication does not have to be a topic of the parental sessions for parents of adolescents with ASD. Structure of the

training

The trainer and adolescent will be building a system throughout all sessions for planning and making their homework rather than teaching different strategies in every session.

The order of learned strategies will be different. First, the problem has to be clear. Thereafter the different planning strategies will be taught to the adolescent and the adolescent and trainer will make a framework in which is described step-by-step how the adolescent will plan his or her homework. The offered skills will be practiced repeatedly. Finally the therapist and adolescent will think of ways to prevent relapse.

Generalization of learned skills

Strategies will be taught earlier on in the training and repeated frequently to assure generalization.

The training will consist of approximately six weekly sessions to teach the planning strategies, followed by six monthly booster sessions with parents and adolescents to sustain and improve generalization of the learned skills. Parents are important as a co-therapist to improve generalization.

Motivational Interviewing

Due to the limited abilities to reflect in ASD, MI is less applicable. Especially for the younger adolescents. The MI-elements are optional, and could be used for adolescents lacking motivation.

MI has to be part of the booster sessions to sustain the motivation, though. Language and

wording

Questions have to be formulated more directly and literally. Asking one question at a time.

Whenever adolescents have to think of possible solutions, there have to be fewer solutions to fill in because the adolescents with ASD want to fill in every rule.

CBT CBT has to focus on cognitive instructing rather than cognitive restructuring. The therapist has to offer structure and lower the pace during the sessions. Therapeutic

attitude

The therapist needs to have a direct and firm attitude, whereby he or she rather gives instructions than discusses ways to do something.

Humor is important to distract and relax the adolescent.

ADHD attention deficit hyperactivity disorder, ASD autism spectrum disorder, CBT cognitive behavioral therapy, MI motivational

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13 Discussion

This study was the first study for adolescents with ASD, exploring the effects of a CBT focusing on planning skills. The first research question was whether executive functions, planning skills and ASD symptoms of adolescents with ASD improve after receiving Plan My Life. Our results demonstrated no effects of Plan My Life on executive functioning problems in general and planning problems, nor on other components of executive functioning. The small effect sizes confirmed no effect of treatment on executive functioning and planning. This indicates that (1) Plan My Life in its current form, is not an effective treatment for adolescents with ASD, and that (2) trained executive functions were not transferred to daily executive functions, which indicates either skills are not acquired or a lack of generalization of learned skills.

The second research question was how the treatment Plan My Life could be modified in order to make it more applicable to adolescents with ASD. In general, findings showed that there are a couple of main adjustments that are necessary, particularly due to the limited abilities to reflect (Rosenthal et al., 2013) and generalize (Hume et al., 2012) of individuals with ASD. Most important recommendations are: adding repetition and booster sessions to develop routines and improve generalization, collaborate with both the adolescent and parents because adolescents with ASD usually still need their parents to plan their homework, and using cognitive instruction techniques rather than cognitive restructuring. The finding that Plan My Life in its current form is not applicable to adolescents with ASD is in line with an earlier RCT showing that an evidence based executive function training for children with ADHD, in its current form, is not a feasible treatment for all children with ASD (De Vries, Prins, Schmand, & Geurts, 2015). That CBT needs modification to be applicable on individuals with ASD, is confirmed (Moree & Davis, 2010; Rotheram-Fuller & MacMullen, 2011). More specifically, on the one hand, our findings are in line with earlier studies showing that CBT for ASD should focus on developing routines (Hampshire et al., 2014), and using parents as a co-therapist to improve independency at home (Hampshire et al., 2014) and applying skills to different settings (Hume et al., 2012; Schuurman, 2013). However, on the other hand, the findings of adult CBT for ASD suggesting techniques to improve coping skills and use of cognitive restructuring and motivational techniques (Schuurman, 2013) seem to be less applicable to this adolescent focused CBT. In addition, adapting to changes is another problem faced by adolescents with ASD. Change or unpredictable situations cause frustration, such as anger or panic, for these adolescents because they do not know how to adapt to this. Although it is not possible to prevent the adolescent from all changes in their lives, and it is hard to teach this in treatment, developing routines is very important. Moreover, it seems to be important for parents to provide as much structure in the adolescents’ lives as possible and think of ways to structure a situation when the adolescent becomes frustrated. This however implies difficulties in becoming more independent on the adolescent.

Besides, no effects were found of treatment on ASD symptoms. Concerning ASD as a life long, persistent disorder (Gezondheidsraad, 2009), this is not surprising. However, finding no effects could be the result of our small sample size (Field, 2009). Moreover, almost half of our sample had co-existing ADHD, which is associated with higher autistic traits than children with only ASD (Sprenger et al., 2013; Yerys et al., 2009), and more attention problems than children with only ADHD (Sinzig, Morsch, & Lemkuhl, 2008). Although our sample is representative (Simonoff et al., 2008; Sinzig et al., 2009), this could explain why the training in this pilot is not effective for adolescents with ASD.

However, although there are no significant improvements in the current study, both parents and adolescents evaluated the training positive. Almost half of the parents and almost all of the adolescents would recommend the training to other adolescents with ASD. Attrition rate was also low in our study (Johnson et al., 2008), suggesting that for adolescents and parents it is motivating enough to continue treatment. Adolescents have higher expectations of the treatment benefits as compared to their parents, possibly explained by the adolescents’ limited abilities to reflect on their own behavior (Rosenthal et al., 2013). Nevertheless, taking increasing motivational deficits in adolescence into account (Spear, 2011), a positive evaluation of the adolescents about the treatment is important to motivate them for treatment.

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The current study adds to the existing literature by showing that adolescents with ASD are in need of specific methods to learn and acquire planning skills, focusing on repetition and generalization. According to the qualitative analysis, specific recommendations for treatment revision for a planning focused CBT for these adolescents are made. Moreover, because of their specific deficits, adolescents remain to be (at least partially) dependent of their social environment, usually parents. However, this pilot study also adds to the existing literature by showing that the approach used in this planning focused CBT is motivating for adolescents with ASD.

This pilot study also has some limitations. First, our design lacked a waitlist control group. The main aim of the study was exploring the applicability of a novel CBT focusing on planning skills for adolescents with ASD. Because this was a pilot study, a waitlist control group was not part of the study. One could argue, therefore, that it is not possible to compare symptoms of adolescents with ASD in the current treatment with adolescents following treatment as usual or no treatment at all. However, ASD is a persistent neuro-developmental disorder (American Psychiatric Association, 2013) wherefore spontaneous recovery or deterioration in the eight weeks this treatment lasts, does not seem plausible.

Second, this design lacked a follow-up assessment. Therefore, it cannot be concluded whether there will be effects of the treatment on the long term. Because generalizing and internalizing learned skills is hard for individuals with ASD (Hume et al., 2012), and these individuals will keep in need of others’ assistance in their daily life functioning (Pugliese et al., 2015), one might argue that learned skills do not persist after completing treatment. However, one could also argue that it takes more time to internalize the taught skills wherefore there will be effects on follow-up rather than posttest. According to our qualitative analysis and the evaluations of parents and adolescents, treatment could be improved by adding booster sessions to assure generalization of skills. It will be an important next step to improve training and study short- as well as long term effects.

Third, adolescents as a group are not showing executive functioning- and planning problems on pretest, indicating that this sample does not suffer executive function deficits according to their parents. However, parents and adolescents applied themselves for treatment to improve planning skills. One could argue, therefore, that they do experience problems with planning in their daily life. Moreover, also after studying only the adolescents that did show clinical significant executive functioning- and planning problems at baseline, no effects were found after completing treatment on all outcomes. This could also indicate that executive function deficits are not predominant in ASD and treatment should focus on other impairments. According to the social motivation theory (Chevallier, Kohls, Troiani, Brodkin, & Schultz, 2012), one of the most recent theories of ASD, a social motivation deficit rather than cognitive impairments (Baron-Cohen et al., 1985; Happe & Frith, 1996, Johnson, 2012) plays an important role. Future studies of executive functioning in ASD should take this into account.

Fourth, an IQ-measure was not part of this study due to practical considerations. Consequently, we cannot assure that participants had a sufficient intelligence to benefit from CBT. However, their Dutch education level had to be at least average (Kaldenbach, 2007), and our sample consisted of adolescents almost all attending the higher education level. One could argue, therefore, that the IQ of our sample was sufficient, and maybe even higher than average. However, this could also make our results less able to generalize to the population of adolescents with ASD (Begeer et al., 2013). Furthermore, most of the adolescents attended special education. It can be expected that they already get assistance at school aimed at the impairments of ASD. Findings could perhaps not be generalized to students with ASD attending regular secondary schools. Further research should include a more heterogeneous sample to conclude if Plan My Life is effective for adolescents with ASD from different types of schools.

This study brings forward some clinical implications. First, as research into the effectiveness of treatments for ASD is lacking almost completely (Nederlandse Vereniging voor Psychiatrie, 2009), Plan My Life is the first planning focused CBT that is studied in adolescents with ASD. Second, this study showed Plan My Life in its current form is not applicable on adolescents with ASD without intellectual disabilities: no treatment effects were shown on executive functions, planning skills and ASD symptoms. However, adolescents were motivated to follow and complete this short CBT. Third,

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15 this CBT requires adjustments to be applicable on individuals with ASD (Moree & Davis, 2010; Rotheram-Fuller & MacMullen, 2011). Plan My Life needs to consist of more repetition and booster sessions, and increased collaboration with both parents and adolescents. After revision of the treatment, it should be studied whether the training in its future form is effective for adolescents with ASD in improving executive functioning and planning, preferably in an RCT compared with a waitlist control group and follow-up assessments.

Conclusion

All in all, in this pilot study, a novel CBT focusing on planning skills was studied to investigate whether problems with executive functioning and planning, and ASD symptoms improve after completing treatment. Adolescents showed no improvement on all these three outcomes but this could be explained by the present form of the CBT and the specific deficits in the ability to generalize skills adolescents with ASD face in their daily life. This form should be adjusted and improved to better serve the needs of these adolescents. Future studies should pursue whether the revised CBT is effective in improving executive functioning, and therefore as a side-effect independency, in adolescents with ASD.

Acknowledgments We are grateful to the participating families and mental healthcare institute Psychologen Praktijk Kuin for their participation and collaboration.

Conflict of interest Bianca E. Boyer is co-developer and author of the manual ‘Plan My Life’. She receives royalties for the sale of the intervention. Other author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Appendix A

Aanbevelingen met betrekking tot wekelijks terugkerende onderdelen

Onderwerp Blijven? Wat werkt goed Wat werkt niet goed

School ✓ Het bespreken van school gaat goed, de adolescenten kunnen een cijfer geven. Alleen de formulering van de vragen dient anders te zijn.

Het aangeven waarom het geen lager cijfer is, is lastig. Voorstel: ‘Hoezo is het geen (één cijfer lager)?’.

De adolescenten geven vaak een externe factor aan waarmee school een cijfer hoger kan worden. Voorstel: ‘Hoe zou jij het (één cijfer hoger) kunnen maken?’. Medicatie X Voor- en nadelen alleen bespreken

wanneer het niet gebruiken van medicatie een optie is, anders zorgt het voor twijfel. Deze vraag is niet

(voldoende) van toepassing bij ASS. Afgelopen week ✓ Bedenken wat er goed ging, lukt wel.

Helpende gedachten helpen wel maar moeten vaker door de therapeut gesuggereerd worden, bv: ‘Zou het kunnen helpen als je denkt...’.

Beginnen met: ‘Pak je systeem erbij, hoe is dit gegaan’. Dit komt in plaats van het doornemen van de agenda.

De vragen zijn lastig om te beantwoorden voor de jongeren. Met name: ‘Wat vind ik daarvan?’, deze vraag kan weggelaten worden.

Dit onderdeel kan ingevoegd worden nadat cijfers zijn gegeven voor de doelen van de afgelopen week. Dit volgt logischer op elkaar.

Doelen ✓ Gaat goed, hoeft niet gewijzigd te worden.

Deze week doen X Deze vraag geeft een overzicht van wat er de komende week geoefend gaat worden maar is, zoals het nu is, te uitgebreid en te weinig concreet. Voorstel: ‘Dus ik ga deze week (1), (2), (3) doen’. Dit komt na de

evaluatievragen. Dit vormt samen de laatste bladzijde van de sessie.

Schrijfregels moeten verder uit elkaar om het overzichtelijker te maken.

Hoe was de training vandaag?

✓ Nuttig- en Ga ik doen-schaal werken goed, zijn informatief en sluiten aan bij de vraag wat de adolescent de komende week gaat doen (zie ‘deze week doen’).

Toevoegen:

• Wat doe ik al (goed)? (1), (2), (3)… Hier komen de onderdelen die de adolescent in zijn systeem heeft opgenomen.

• Welke nieuwe dingen ga ik proberen deze week? (1), (2), (3)… Hier komt wat de adolescent de komende week nieuw gaat uitproberen in zijn systeem.

De vraag ‘eventuele afspraken voor de volgende keer’ komt hiermee te vervallen.

Samenwerken-schaal weglaten, de adolescenten hebben onvoldoende begrip van het concept samenwerken. Deze vraag geeft geen nieuwe inzichten.

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21 Nieuw voorgestelde volgorde:

1. School 2. Doelen

3. Afgelopen week

4. Sessie specifieke onderdelen

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Aanbevelingen met betrekking tot sessie specifieke onderdelen Sessie 1

Persoonlijke gevolgen * Persoonlijke gevolgen *Beloning *Afspraken *Psycho-educatie X ✓/x ✓ ✓

Het verschilt per kind of er intrinsieke motivatie aanwezig is of dat er een beloning nodig is.

Het werkt beter om bestaande afspraken aan te houden en daarna pas te kijken wat anders kan.

Veel jongeren hebben al veel psycho-educatie gehad, begrijpen het. Vicieuze cirkel er in houden maar gebruiken om te bespreken hoe deze cirkel doorbroken kan worden.

Is minder belangrijk bij ASS, ook niet altijd aan toegekomen wegens tijdsgebrek.

De afspraken helemaal loslaten is een te grote verandering.

Laag zelfbeeld en negatieve gedachten worden weinig herkend. Spanning, frustratie en boosheid als iets niet lukt of anders moet daarentegen wel.

Het bedenken van vicieuze gedachten is lastig maar de cirkel is wel goed om te bespreken wat de jongere kan doen om de cirkel te doorbreken. Voorstel: ‘Er zijn jongeren waarmee het zo en zo gaat…’ Doelen stellen

*Doelen bedenken

*Haalbaarheid

✓

Lijst met mogelijke doelen werkt goed.

Ouders betrekken als de jongere zelf niet tot doelen kan komen. Anders met jongere doelen opstellen en daarna bespreken met ouders. Belangrijk om aan ouders uit te leggen waarom het van belang is dat de doelen echt doelen van de jongeren zelf zijn.

Doelen zo concreet mogelijk formuleren.

Toevoegingen:

• Niet vloeken of schreeuwen in de klas/thuis

• Minder boos worden als iets niet lukt

• Magister checken voordat ik begin met huiswerk

• Doelen over gamen • Doelen over persoonlijke

hygiëne

Gaat goed, kan er in blijven.

Het zelf bedenken van doelen is lastig, lijst met doelen werkt goed.

Doelen in de je-vorm vervangen door ik-vorm (dit kunnen ze letterlijk overnemen). Doelen moeten zich richten op kleine stapjes richting zelfstandigheid.

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23 Sessie 2

Wil ik dit echt? ✓ Voor- en nadelen schema werkt goed.

Negatieve gedachten zijn moeilijk te vatten. Het bedenken van wat de huidige oplossing is en welke oplossingen er nog meer mogelijk zijn is lastig en te abstract. Verduidelijken helpt (‘hoe doe je het nu’?). Voorstel: eerst een brainstorm met alle mogelijke

oplossingen, hieruit een oplossing kiezen en daar voor- en nadelen bij bedenken. Vervolgens plan van aanpak toevoegen. ‘Wat denk ik van de nieuwe oplossing?’ is te moeilijk, vervangen door: ‘Is dit een handig idee?’.

Organiseren om niet te vergeten

✓ Vinden de jongeren logisch, gaat goed.

Agenda

*Wat kan er in een agenda?

*Welke agenda is nou handig?

*Hoe ziet een week in jouw agenda er uit?

*Wat vind ik van een agenda?

✓

Uitbreiden met digitale mogelijkheden (Magister). Benadrukken dat agenda belangrijk is voor ‘wanneer leer ik wat’ omdat je met Magister niet vooruit plant. Samen met de jongere (en ouders) bedenken hoe Magister en agenda werken bij hem/haar en hoe dit kan helpen bij het planningsprobleem. Concreet stappenplan maken wanneer je Magister en agenda gaat gebruiken: ‘Als ik thuis kom dan…’ (adhv hoe, wat, waar wanneer, wie).

Dit werkt wel maar moet eerder besproken worden, bij het maken van het stappenplan als ik thuis kom.

De jongeren gaan actief nadenken over oplossingsmogelijkheden. Dit zorgt voor een vergroting van het zelfvertrouwen omdat degene uit de stelling iets ‘doms’ doet. Geeft inzicht in de mening van de jongere tav een negatieve gedachte.

Minder regels in de tabel, de jongeren willen alle regels invullen.

Vraag formuleren als: ‘Wat kan er allemaal in een agenda?’.

Nieuwe agenda kopen is geen optie.

De vraag wat er handig aan een agenda heeft onvoldoende nut. Onderzoeken hoe agenda en Magister gecombineerd kunnen worden is belangrijker.

Meer ja/nee vragen stellen over wat er handig is, of ze iets willen veranderen. Dit kan gekoppeld worden aan afspraken die gemaakt worden aan het eind van de sessie (‘dit blijf ik zo doen, dit ga ik nieuw

uitproberen’).

Het is voor de jongeren moeilijk om een respons te verzinnen op de vragen.

Formuleren als: ‘Iemand zegt dit…. Wat zou jij terug zeggen?’.

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Sessie 3

Oudersessie X Kan weggehaald worden, het is voor deze jongeren niet relevant om te weten wat er met hun ouders is besproken.

Een to do list

*Wat vind ik van een to do list?

✓

✓/x

To do list is handig voor de jongeren.

Werkt wel maar zo veel tijd aan besteden als nodig is.

Het lijkt vooral belangrijk om een systeem te gaan bouwen en te kijken hoe de to do list in dit systeem past. Het is geen keuze of de jongere het gaat gebruiken maar hoe hij/zij de to do list gaat gebruiken.

Deadline werkt niet, weglaten. De jongeren eerst laten kiezen of iets een A, B of C taak is en vervolgens binnen deze drie groepen nummers laten geven voor prioriteiten.

Voor- en nadelenschema kan voor minder motivatie zorgen omdat de jongere er over na moet gaan denken. Lijkt samen te hangen met of er comorbide ADHD is, dan werkt het beter dan wanneer er alleen sprake is van ASS.