A co-designed psychoeducation for older autistic adults:
A multiple case time series study.
Groenendijk, E.R.1, van Heijst, B.F.C.1,2, & Geurts, H.M.1,2
1 d’Arc, Brain & Cognition, Department of Psychology, University of Amsterdam, The
Netherlands
2 Dr. Leo Kannerhuis (Youz, Parnassiagroup) Amsterdam, The Netherlands
Running title; PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS
Key words: autism, old age, intervention, co-design, psycho-education
Word count: 4713 (without references)
Number of Tables: 5
Number of Figures: 0
Supplementary Material: No PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 2
Author Note
Current affiliations: Eva R Groenendijk: Sitagre, The Netherlands ; Barbara FC van Heijst:
Voorzet, The Netherlands; Hilde M Geurts: d’Arc, Brain & Cognition, Department of
Psychology, University of Amsterdam, The Netherlands; Dr. Leo Kannerhuis, The
Netherlands.
Correspondence concerning this article should be addressed to Hilde M Geurts, d’Arc,
Brain & Cognition, Department of Psychology, University of Amsterdam, Nieuwe
Achtergracht 129-B, 1018 WS, Amsterdam, The Netherlands. Email: [email protected]
(Funding) Acknowledgements
We first want to thank everyone who was active in the think tank of this project. With your lived experience as autistic adult and/or your clinical expertise as clinician you were instrumental in all important decisions, from topics to include, through group size, to outcome measures. Not everyone could participate in every discussion, but everyone was of importance for each phase of this study. Thanks also for the participants and clinicians who were willing to be part of this study.
This study was primarily supported by ZonMW (REACH-AUT no. 70-73400-98-002) and the people involved were primarily supported by their respective employers (see affiliations) and by Innovational Research Incentives Scheme VICI ((grant number 453-16-
006) of NWO awarded to HMG. PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 3
Abstract
There are currently no old-age specific interventions for autistic adults. Therefore, we examined the effectiveness of a co-designed psychoeducation program for older autistic adults
(55+ program), in a multiple case time series study (N=9, age 56-73). For each participant, a person close to them (a proxy) participated as well. This allowed us to calculate a discrepancy score regarding autistic traits and cognitive challenges. The main hypothesis was that the 55+ program, delivered after general psychoeducation, would result in a reduction of the discrepancy observed between self- and proxy reports. However, contrary to our hypothesis, we observed neither intervention effects on our primary outcome measures (aforementioned discrepancy scores) nor the secondary outcome measures (mastery, self-efficacy, self-esteem, self-stigmatization, quality of life, and hope and future perspectives). Thus, despite co- designing the current intervention, the results do not seem to be very promising. However, based on the positive feedback and suggestions of the participants developing an improved version of a specific psychoeducation program for older autistic adults is a worthwhile pursuit
(Netherlands Trial Register [code Trial NL5670]). PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 4
Autism is considered to be a lifelong neurodevelopmental condition, characterized by challenges regarding social behavior and communication, as well as so called stereotypical and repetitive behaviors, emerging early in life (American Psychiatric Association [APA],
2013; Frith & Happé, 2005; Lord, Cook, Leventhal, & Amaral, 2000). The definition of autism spectrum disorder (ASD) by the DSM-5 (APA, 2013) adds to this by stating that functioning in daily life has to be impaired and that so called symptoms should not be explained by intellectual disability alone. Worldwide, approximately 1% of the people meet criteria for such an ASD diagnosis, irrespective of age (Brugha et al., 2012; Lai & Baron-
Cohen, 2015). In 2019, about 703 million people in the world were over 65 years old (United
Nations, 2019), which indicates that there are roughly 7 million older autistic adults1 globally.
This indicates that a substantial group of older autistic adults could benefit from research regarding the challenges they may encounter in their daily lives.
In the scientific field, the main focus of autism research appears to be on children, adolescents and younger adults, and older people appear to be largely neglected (Michael,
2016; Wright, Wright, D’Astous, & Wadsworth, 2019). However, older autistic people are likely to encounter challenges in their daily lives as well (Roestorf et al., 2019). Indeed, older autistic adults were found to exhibit higher rates of, among others, unemployment, anxiety, depression, suicidality and self-inflicted injury than non-autistic older people (Hand, Angell,
Harris, & Arnstein Carpenter, 2019; Lai & Baron-Cohen, 2015; Russell et al., 2016; but see
Lever & Geurts, 2015). This is in line with studies showing that autistic adults experience more psychological symptoms, distress, and psychiatric disorders, as well as a lower quality of life (QoL), compared to typically developing adults (Bishop-Fitzpatrick & Rubenstein,
2019; Rydzewska et al., 2018). Furthermore, older autistic adults appear to suffer from isolation and loneliness, persisting across their lifespan (Hickey, Crabtree, & Stott, 2017).
Lastly, a follow-up study found that a group of autistic adults, diagnosed during childhood, PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 5 experienced poor psychosocial circumstances regarding, for example, employment and independent social progress (Billstedt, Gillberg, & Gillberg, 2005). In conclusion, problems that arise during childhood related to being autistic seem to persist across the entire lifespan, albeit perhaps in different ways.
When receiving an autism diagnosis, the first step, before specific personalized interventions start, is to educate people about the diagnosis and explore together how this might be relevant for someone’s past, present, and future experiences (Kan et al., 2013;
National Collaborating Centre for Mental Health, 2012). This is often formalized in a psychoeducation program which is created for a specific diagnosis and may benefit people with various conditions in different ways. For example, it was found that psychoeducation for people with schizophrenia can improve symptom control and QoL (Xia, Merinder, &
Belgamwar, 2011; Pekkala & Merinder, 2002), and may lead to decreased self-stigmatization
(Karidi et al., 2010). A study regarding bipolar disorder found that psychoeducation can lead to increased acceptance, control (i.e., mastery) and self-confidence (Hofman, Honig &
Vossen, 1992). Moreover, for people with Attention-Deficit/Hyperactivity Disorder (ADHD), psychoeducation was found to improve QoL (Hoxhaj et al., 2018). Psychoeducation thus appears to be beneficial for people with different types of diagnoses. However, is it also beneficial for autistic adults?
Regarding psychoeducation for autistic people, earlier research indicates that it may be beneficial for autistic children, as well as older adolescents and young adults with an ASD diagnosis (Backman et al., 2018; Eikeseth, 2009). These interventions focused on exploring and explaining the differences that autistic children, adolescents, and young adults experience in their development, as compared to non-autistic peers. As mentioned before, autism is not a transient phenomenon; one is autistic throughout his or her entire lifespan (Seltzer et al.,
2004). Therefore, older autistic adults may also age (i.e., develop) differently from their non- PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 6 autistic counterparts. For example, older autistic adults might be more sensitive to age-related decline in executive functions such as planning and cognitive flexibility (Baxter et al., 2019;
Powell, Klinger, & Klinger, 2017) although findings are rather inconsistent (see Geurts &
Vissers, 2012; Geurts, Pol, Lobbestael, & Simons, 2020). In specific cognitive domains such as episodic and visual (working) memory non-autistic adults’ performance declined with age, whereas autistic adults’ performance did not decline (Lever, Werkle-Bergner, Brandmaier,
Ridderinkshof, & Geurts, 2015; Lever & Geurts, 2016). Furthermore, socio-cognitive understanding in autistic people might improve with age, which could be caused by increased compensation (Happé & Charlton, 2012) or by embracing the differences more instead of camouflaging them (Lever & Geurts, 2016; Livingston & Happé, 2017). Summarizing, autistic adults appear to develop differently compared to their non-autistic counterparts.
Autistic adults may, therefore, benefit from psychoeducational interventions, like autistic children, because each life phase likely presents itself with different challenges.
Consequently, it may even be beneficial to repeat psychoeducation multiple times in an autistic person’s life. However, there are no psychological interventions yet that address the needs of older autistic adults (Mukaetova-Ladinska et al., 2012; Piven & Rabins, 2011).
Preliminary findings of an observational study investigating the role of psychoeducation in the acceptance of an autism diagnosis, indicated that the currently available psychoeducation did not help autistic adults to accept their diagnosis, regardless of the way in which the intervention, or the included information, was provided (Spek & Boxhoorn, 2014).
Although the effects of psychoeducation for autistic adults were not yet systematically investigated, the authors did conclude that programs should be developed that meet the specific needs of autistic adults (Spek & Boxhoorn, 2014). Thus, at least autistic adults should be involved in the development of such a program. Therefore, the psychoeducation program
“Older and Wiser” (original title in Dutch: “Ouder en Wijzer”; van Heijst & Geurts, 2016) PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 7 was developed in collaboration with autistic adults and clinicians working in the field. It is specifically designed to inform older autistic adults about the effects of aging in autism, and the possible differences in their development as compared to older non-autistic adults.
Themes were based on earlier general aging psychoeducation programs, existing autism psychoeducation programs, and brainstorms with autistic adults and clinicians. To our knowledge, this is the first co-designed psychoeducational intervention focusing specifically on older autistic adults.
In Dutch mental health care, people diagnosed with autism do receive general psychoeducation about autism (Netwerk Kwaliteitsontwikkeling GGz, 2020; Kan et al.,
2013). However, more research is needed regarding the efficacy of psychoeducation for autistic adults (Netwerk Kwaliteitsontwikkeling GGz, 2020; Kan et al., 2013). Moreover, as
“older age” is a different life phase with different challenges, the general autism psychoeducation program may not be sufficient for older autistic adults. The current study is aimed at investigating, by means of a multiple case time series study, whether an additional
(i.e., after regular psychoeducation) age-specific psychoeducation may be beneficial for older autistic adults, and whether further, more extensive, research in this direction is required.
A reason to assume that an additional psychoeducation is beneficial for older autistic adults is the large discrepancy between self- and other-reported ratings of autism characteristics (Lever & Geurts, 2018). Due to this discrepancy, people close to the autistic adults (i.e., their proxy) may misunderstand the specific needs of autistic adults when offering support. Therefore, “Older and Wiser” (van Heijst & Geurts, 2016) is aimed at improving autism specific primary outcome measures in both older autistic adults and their proxy. These include insight in autism and aging, and corresponding cognitive challenges (i.e., increase the knowledge both the autistic person and their proxy have regarding the autistic person, and thereby decrease the discrepancy in insight). We hypothesize that the psychoeducation PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 8 program will primarily lead to an improved insight in one’s own autistic characteristics and the corresponding cognitive challenges, for both participants and their proxy. Furthermore, based on earlier findings and input from the target audience (i.e., an advisory group including clinicians and autistic adults), secondary outcome measures have been decided upon which are not uniquely related to autism. These include mastery, self-efficacy, self-esteem, self- stigmatization, QoL and hope and future perspectives. We hypothesize that secondary effects of the program include improved mastery, and increased self-efficacy, self-esteem, QoL, and hope and future perspectives. Lastly, we hypothesized that self-stigmatization will decrease.
Method
Participants
Participants were nine autistic older (aged 56 to 73 years) adults (eight males, one female), recruited through two locations of the Mental Health Care institute “Dr. Leo Kannerhuis”, in
Amsterdam and Doorwerth.
Participants were already diagnosed with ASD by a multidisciplinary team according to the Dutch multidisciplinary guidelines (Kan et al., 2013), and had received the standard psychoeducation related to autism as provided by their primary mental health care institutions.
People aged 55 or older who mastered the Dutch language sufficiently (as indicated by the clinic) were included. The Autism Diagnostic Observation Schedule (ADOS; Lord et al.,
1989) was included, in order to confirm participants’ autism diagnosis. Participants were excluded when they had a specific co-occuring condition, such as bipolar disorder, which might interfere with the results of the study. Participants’ IQ had to be at least 80 as estimated by the Dutch Adult Reading Test (DART; Schmand, Lindeboom, & van Harskamp, 1992) and/or their cognitive performance score had to be above the cut-off on the Montreal
Cognitive Assessment (MoCA; Dautzenberg & de Jonghe, 2004; Nasreddine, 2005), PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 9 depending on education level and age, in order to ensure a comparable level of functioning and understanding across participants. Four participants with a cognitive performance score below the MoCa cut-off but IQ scores above 80, and one participant with an IQ score below
80 but a MoCa score above the cut-off, were included in the study since one of the two inclusion criteria was met. This resulted in nine participants, with an additional nine proxies: one for each participant. Additional general information regarding the participants is depicted in Table 1.
Table 1.
General characteristics of the participants.
Construct Range Mean (SD) Age 56-73 65.0 (5.6)
IQ (DART)1 76.8-109.2 98.5 (10.3)
Cognitive performance (MoCA)2 20-29 25.2 (3.0) ADOS3 1-12 7.4 (3.8) Education4 5-7 6.1 (.8) 1Schmand, Lindeboom, & van Harskamp, 1992. 2 Nasreddine, 2005. 3 Lord et al., 1989. 4 Verhage, 1964.
Materials
We developed and examined the psychoeducation program “Older and Wiser” (van Heijst &
Geurts, 2016). Based on scientific literature and brainstorm sessions with autistic adults, clinicians, and scientists, the first version of the program (including guidelines for the number of participants, number of sessions, duration of sessions, and subjects to include in the program) and primary and secondary outcome measures were determined. Based on a pilot study (N=3) to test the provided manual, the feasibility of the assignments, and the measures used, the final version of the program and included questionnaires for measuring the outcome measures were determined (van Heijst & Geurts, 2016). An overview of the themes covered by the program can be found in Table 2.
Table 2.
Content of the weekly meetings of the psychoeducation program “Older and Wiser” (van Heijst & Geurts, 2016) PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 10
Week Theme Content 1 Autism spectrum conditions and Information processing, cognitive cognitive theories styles, aging, DSM classification, neurodiversity. 2 Cognitive aging part I: Memory Cognitive aging, differences in aging processes between autistic and non- autistic people, aging and memory, memory in autistic people, compensation techniques. 3 Cognitive aging part II: Autism Aging when autistic with regards to specific theories Theory of Mind, Double empathy, central coherence, executive functions. 4 Daily life Health, daytime activities, living situation. 5 Social network Characteristics of the social network, changes in the social network when one ages, social resilience. 6 Future Coping, purpose, reviewing and looking ahead.
One of the distinctive features of the program is the fact that not only the relatively ‘common’ subjects regarding ASD (e.g., Theory of Mind, central coherence, and executive functions) were covered. For example, more ‘modern’ and less stigmatizing subjects such as double empathy and neurodiversity were also touched upon. The program consisted of six weekly meetings of two hours each. Participants received a workbook containing information and assignments. In between meetings, participants had to read texts and complete assignments, as a preparation for the next meeting. In one of the meetings participants could bring their proxy of choice and some of the assignments also needed to be carried out by their proxy. At the end of each meeting, participants were asked to answer questions in their workbook, evaluating the program and the trainers. Finally, questions were posed in order to help participants reflect on what went well in daily life and what could have gone better, how they handled certain situations, and alternative approaches to those situations.
Primary outcome measures
Two questionnaires, namely the Autism Quotient (AQ) and the Cognitive Failures
Questionnaire (CFQ) were administered both to the participants and their proxy. PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 11
The AQ short version (Hoekstra et al., 2011) is a widely used autism traits questionnaire consisting of 28 questions to be answered on a 4-point Likert scale. The higher the total score on the AQ, the more autism traits someone reports.
The CFQ (Broadbent, Cooper, FitzGerald, & Parkes, 1982) is a questionnaire focusing on experienced cognitive challenges. This questionnaire consists of 25 questions to be answered on a 5-point Likert scale. The higher the total score on the CFQ, the more cognitive failures someone reports.
The dependent measure for both the AQ and CFQ is the difference score between the proxy and the self (i.e., AQ total score self minus the AQ total score proxy and CFQ total score self minus the CFQ total score proxy). Please note that the underlying idea is that a smaller difference between self and proxy reflects better mutual understanding of the challenges the autistic person experiences.
Secondary outcome measures
A series of six questionnaires was used as secondary outcome measures. All measures were chosen based on their psychometric properties and their earlier use in clinical practice with older and/or autistic adults (see Table 3) in order to cover the outcome domains which were chosen by the autistic adults and clinicians.
The Pearlin Mastery Scale (Pearlin & Schooler, 1978) is a questionnaire focusing on the amount of control one feels regarding factors that influence his or her daily life. The questionnaire consists of seven questions using a 5-point Likert scale. The higher the total score on the Pearlin Mastery Scale, the more control someone experiences regarding factors that influence his or her life. PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 12
Table 3.
Psychometric properties and additional information regarding the questionnaires
Questionnaire Measured Test-retest Construct validity Already used in construct reliability
General DART1 Intelligence Sufficient2 Sufficient2 Older autistic information adults3, older people4 and autistic adults5
ADOS6 Autism Excellent7 Excellent7 Older autistic adults8
MoCA9 Cognitive Good10 Sufficient10 Older autistic performance adults11, older people10 and autistic adults12
Primary AQ-Short13 Insight in autism Excellent13 Sufficient13 Older autistic outcome (internal adults (long measures consistency version)14 reliability)
CFQ15 Insight in cognitive .8216 - Older autistic challenges adults17,18 and older people19
Secondary Pearlin Mastery Perceived control .721 (person Good22 Older people23 outcome Scale20 over one’s life separation index) measures
Generalized self- Self-efficacy .8225 Sufficient25 Older people26 efficacy scale24
Rosenberg self- Self-esteem .9128 Sufficient28 Older people28 esteem schedule27 autistic adults29
ISMI-1030 Self-stigmatization .75 (internal Adequate30 Older people31 consistency reliability)30
WHOQoL-BREF32 Quality of life Sufficient33 Good33 Autistic adults34
Remoralization Hope and future .8935 Good35 - Scale35 perspectives
Note. DART = Dutch Adult Reading Test. ADOS = Autism Diagnostic Observation Schedule. MoCA = Montreal Cognitive Assessment. AQ = Autism Spectrum Quotient. CFQ = Cognitive Failures Questionnaire. ISMI = Internalized Stigmatization Scale of Mental Illness. WHOQoL = World Health Organization Quality of Life. 1 Schmand, Lindeboom, & van Harskamp, 1992. 2 COTAN, 2018. 3 Geurts & Vissers, 2012. 4 Weghorst, Scherder, & Oosterman, 2017. 5 Maes, Eling, Wezenberg, Vissers, & Kan, 2011. 6 Lord et al., 1989. 7 Lord et al., 2000. 8 Brugha et al., 2011. 9Nasreddine et al., 2005. 10 Sweet et al., 2011. 11 Powell, Klinger, & Klinger, 2017. 12 Woodruff, Locke, Hentz, Smith, & Geda, 2015. 13 Hoekstra et al., 2011. 14 Brugha et al., 2011. 15 Broadbent, Cooper, FitzGerald, & Parkes, 1982. 16 Vom Hofe, Mainemarre, & Vannier, 1998, in Wallace, Kass, & Stanny, 2002. 17 van Heijst & Geurts, 2015. 18 Lever & Geurts, 2016. 19 Knight, McMahon, Green, & Skeaff, 2004. 20 Pearlin & Schooler, 1978. 21 Eklund, Erlandsson, & Hagell, 2012. 22 Marshall & Lang, 1990. 23 Penninx et al., 1997. 24 Jerusalem & Schwarzer, 1992. 25 Leganger, Kraft, & Røysamb, 2000. 26 Wu, Tang, & Kwok, 2004. 27 Rosenberg, 1965. 28 Sinclair et al., 2010. 29 Hillier, Greher, Poto, & Dougherty, 2012. 30 Boyd, Otilingam, & DeForge, 2014. 31 Werner, Stein- Shvachman, & Heinik, 2009. 32 Skevington, Lofty, & O’Connell, 2004. 33 WHOQoL group, 1998. 34 Ayres et al., 2018. 35 Vissers, Keijsers, van der Veld, de Jong, Hutschemaekers, 2010. PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 13
The Generalized Self-Efficacy Scale (Jerusalem & Schwarzer, 1992) is a questionnaire that concentrates on the degree to which someone believes in one’s own ability to succeed in certain situations. This questionnaire consists of 12 questions that can be answered on a 5- point Likert scale. The higher the score on this questionnaire, the higher the degree to which someone feels able to succeed.
The Rosenberg Self-Esteem Schedule (Rosenberg, 1965) focuses on the degree of self- esteem. This questionnaire consists of 10 questions with a 4-point Likert scale. The higher the total score on the Rosenberg Self-Esteem Schedule, the higher the degree of self-esteem someone reports.
The brief version of the Internalized Stigma of Mental Illness (ISMI; Boyd, Otilingam,
& DeForge, 2014) scale is a questionnaire aimed at estimating the amount of stigma related to mental illness someone subjectively experiences. This questionnaire consists of 10 questions to be answered on a 4-point Likert scale. A higher total score on this questionnaire indicates a higher degree of internalized stigma related to mental illness.
The WHOQoL-BREF (Skevington, Lofty, & O’Connell, 2004) is a questionnaire concentrating on QoL. This questionnaire consists of 26 questions which can be answered on a 5-point Likert scale. The higher the total score on this questionnaire, the higher someone’s reported QoL.
The Remoralization Scale (Vissers, Keijsers, van der Veld, de Jong, &
Hutschemaekers, 2010) is a questionnaire aimed at estimating someone’s level of morale.
This questionnaire consists of 12 questions which can be answered on a 4-point Likert scale.
A higher score on this questionnaire indicates a higher level of morale (i.e., a better mental or emotional state). PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 14
Additional measures
Lastly, a quantitative questionnaire was administered after the intervention in order to have more general information to interpret the findings of the intervention. Participants were asked to indicate any (major) life changes they had experienced during the study that could possibly interfere with the results. Furthermore, participants could indicate on a 7-point Likert scale to what extent the psychoeducation program had helped them. They could elaborate on this score by describing how the program did (or did not) help them, as well as possible recommendations they might have to improve the program.
Procedure
This time series study consisted of two phases: a baseline phase and an intervention phase, both lasting six weeks. Before the baseline phase started (T1), participants were screened using the MoCA (Nasreddine, 2005), DART (Schman, Lindeboom, & van
Harskamp, 1992), ADOS (Lord et al., 1989), and a general questionnaire. At the start and at the end of the baseline phase (T2 and T6), as well as at the end of the intervention phase
(T12), participants had to fill out the questionnaires for the primary outcome measures. From the first week onwards at the end of every week, during both the baseline phase (T2-T6) and during the intervention phase (T7-T12), participants had to fill out the questionnaires for the secondary outcome measures. All questionnaires were sent through emails. We aimed to minimize missing data by calling or emailing participants who did not fill out questionnaires on the designated day.
During the intervention phase, the older autistic adults participated in the psychoeducation program “Older and Wiser” (van Heijst & Geurts, 2016). The program consisted of six weekly meetings lasting approximately two hours and was provided by experienced trainers from the participating mental health institutions. PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 15
The study was accepted by the ethics committee of the University of Amsterdam
(reference code: 2015-BC-4464). An earlier version of the current study was registered at the Netherlands Trial Register (code: NTR 5907). However, due to practical issues that study could not be carried out. Based on that failed trial, which was set up as a small randomized controlled trial, adjustments were made to parts of the design and questionnaires and the adapted study was registered at the Netherlands Trial Register (code Trial NL5670).
Data analysis
Prior to data collection, the analysis plan for this study was specified in a proposal within the context of a master thesis project by the first author.
First, we examined the difference score between the participants and their proxy, on the primary outcome measures (i.e., AQ and CFQ). Using a paired samples t-test, we expected to find a decrease in this difference score during the intervention phase (i.e., between T6 and
T12), that was significantly larger than the change in the difference score during the baseline phase (i.e., between T2 and T6). The analyses were run both with and without outliers.
However, the pattern of the results was not altered by excluding outliers. A power analysis for paired samples t-tests (Champely, 2017) indicated that, to obtain a power of 0.8 and a
‘medium’ effect size of 0.5 (Cohen, 1990), we needed 26 ‘pairs’ of participants. We were aware that our small sample size could lead to low power and thus decided before the study started to interpret the results with caution: any significant positive effects would be interpreted as a reason to investigate the psychoeducation program further, rather than as evidence that it is beneficial for older autistic adults. Also, we estimated the Bayes factor for the data using JASP (2020). With a Bayes factor (i.e., ‘BF01’) the fit of the data can be compared under the null hypothesis and the alternative hypothesis.
Moreover, individual changes on the secondary outcome measures were investigated.
Missing data was accounted for in the following ways. Whenever the authors of the PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 16 questionnaires had explicitly mentioned how missing data should be handled for a questionnaire, these guidelines were followed. Otherwise, the total mean score on a questionnaire was computed for a participant when no more than two values were missing.
Furthermore, in the case that a participant did not fill out the questionnaires for one or more weeks, the mean scores on the questionnaires from the previous week were used (i.e., last measure carried forward).
We used a method for analyzing data in single-case experimental designs, that estimated treatment efficacy by comparing changes in symptoms within subjects, between baseline and intervention (Maric, de Haan, Hogendoorn, Wolters, & Huizenga, 2015). In addition, a
Reliable Change Index (RCI) was computed, indicating whether an individual exhibits significant change in reaction to an intervention (Maric et al., 2015). No guidelines existed regarding effect sizes for RCIs (Maric et al., 2015), but we expected to find an improvement in at least half of the participants, on at least three secondary outcome measures.
Finally, we used the results from the quantitative questionnaire in order to investigate participants’ opinion about the psychoeducation program in more detail1.
Results
Primary outcome measures
First, we observed no significant difference in the AQ scores for the baseline phase
(M=7.11, SD=6.25) and the intervention phase (M=6.78, SD=4.79), t(8)=.165, p=.873.
This implies that the psychoeducation program did not significantly improve insight in autistic traits. Moreover, the Bayes factor (null/alternative; BF01) suggested that it was 3.07 times more likely to observe the data under the null hypothesis than under the alternative
1 In addition, we planned on carrying out exploratory analyses in order to examine possible causal effects between the outcome measures. This would be done with a cross-lagged panel research design (Anderson & Kida, 1982) that could infer temporal precedence between two variables. We expected to find a temporal precedence of the primary measures over the secondary measures, indicating a possible causal effect. However, the analyses regarding the primary outcome measures were not significant which led us to decide not to perform these PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 17 hypothesis. In other words, it was 3.07 times more likely to observe the data under the model assuming there is no larger decrease in the AQ difference score during the intervention phase than the baseline phase, between participants and their proxy. This result is in line with the aforementioned paired samples t-test.
Table 4.
An overview of the RCI values for each participant, on the secondary outcome measures.
Subject Sex RS ISMI SE QoL QoL QoL QoL PMS RSE
(M/F) domain 1 domain 2 domain 3 domain 4 201 F 3.44 -0.34 -0.47 1.07 -0.09 -2.84 4.21 2.29 -0.31 203 M -0.34 -0.01 0.05 1.07 -0.10 -2.84 4.21 1.46 -1.22 204 M -1.00 0.11 1.36 0.41 -1.60 -1.60 -5.36 1.83 0.93 205 M 0.31 -0.5 -1.35 0.20 0.12 0.70 -1.86 -0.73 0.41 301 M -0.52 -2.22 1.72 -2.24 4.95 3.02 -5.36 0.75 0.80 302 M 0.00 -0.28 0.65 -5.22 1.07 -6.52 3.61 0.45 -1.31 303 M -0.34 -0.44 0.36 0.34 0.10 5.05 0.82 0.92 0.56 304 M 0.10 0.67 -1.31 0.00 0.52 3.05 11.89 0.00 2.44 306 M -0.17 -0.22 -0.55 -1.61 3.07 0.00 5.07 0.47 2.44 Values that indicate reliable change (i.e., RCI >1.96) are bold.
Note. RS = Remoralization Scale. ISMI = Internalized Stigmatization Scale of Mental Illness. SE = Generalized self-efficacy scale. QoL = World Health Organization Quality of Life. PMS = Pearlin Mastery Scale. RSE = Rosenberg self-esteem schedule.
Second, there was also no significant difference in the CFQ scores on the baseline phase
(M=9.56, SD=8.49) and the intervention phase (M=6.89, SD=6.05), t(8)=1.91, p=.092. This implies that the psychoeducation program did not significantly improve insight in cognitive challenges. However, BF01 = 0.86, it is 0.86 times more likely to observe the data under the null hypothesis than under the alternative hypothesis. Bayes factors between 0.33 and 3 are considered as indicating ‘data insensitivity’ and therefore this result is undecided.
As indicated by Maric et al. (2015), estimated phase end points were used to assess reliable change, where an RCI > +1.96 or < -1.96 indicated reliable change. We found that one participant showed significant improvement on three of the outcome measures (i.e., at least half of the outcome measures), namely hope and future perspectives, QoL, and mastery. PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 18
The other eight participants showed improvement on two or less of the outcome measures. An overview of the results of this analysis can be found in Table 4.
The quantitative questionnaire that participants filled out after the study yielded insights regarding the way participants had experienced the psychoeducation program and the study in general. For example, a participant indicated that the program had improved his or her self- confidence whereas another participant found the information in the program useful, albeit hard to implement it in daily life. Suggestions were given in order to improve the psychoeducation program in the future, such as having to fill out fewer questionnaires between the sessions. A summary of the answers to the questionnaire can be found in Table 5.
Table 5.
Examples of answers given by participants to questions regarding the efficacy of the psychoeducation program
Question Examples of given answers Did you, besides following the psychoeducation Health issues in relatives or close friends / program “Older and Wiser”, experience any (big) psychological issues / changes in living changes in your daily life during the time frame situation. of this study?
To what extent do you feel that the M= 4.7, SD= 1.1 psychoeducation program has helped you? Please answer on a scale on which 1 means that the program did not help you at all, and 7 means that program did help you a lot.
Could you explain in your own words why you The information was useful but implementing think the program has or has not helped you? it in daily life was difficult / Sharing experiences with others was helping / The program improved self-confidence / The contact with others and the mutual recognition was useful.
Do you have any suggestions for ways in which More help implementing the new knowledge we could improve the psychoeducation in the in daily life / Use less difficult words and future? articles in the program / Less reading and questionnaires in between sessions.
Discussion
In the current study the effectiveness of the co-designed psychoeducation program “Older and
Wiser” (van Heijst & Geurts, 2016) for older autistic adults was investigated. First, contrary to our expectations, it was found that the psychoeducation program did not improve overlap in PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 19 insight in autism in participants and their respective proxy. Second, it was found that the data was insensitive regarding the hypothesis that the psychoeducation program improved insight in cognitive challenges in participants and their proxy. Third, contrary to our expectations, less than half of the participants improved on at least half of the secondary outcome measures.
This could imply that the co-designed psychoeducation program was not beneficial for the autistic adults who participated even though the participants gave positive feedback after completing the program (e.g., contact with other participants was useful, the program improved self-confidence). So, do we need to stop using this program? We argue that this conclusion would be premature. Thus, before going back to the drawing board, we will discuss alternative explanations for the observed null-findings.
First, participants could have experienced a rather heavy workload from filling out the weekly questionnaires and the weekly assignments. This workload was indeed mentioned by some participants (see also Table 4) and was also observed by the clinicians delivering the intervention (through personal communication). Investigating the possible positive effects of the psychoeducation program through weekly questionnaires, may have caused difficulty for participants to experience those possible effects as the focus was too much on study participation instead of reflecting on one’s own experiences. Moreover, the weekly assignments could induce time-pressure and stress instead of (self)reflection. A way to avoid this could be to plan one session every two weeks instead of every week, in order to give participants more time to finish the assignments and fill out the questionnaires.
Second, it might be helpful to use the outcome of the (bi-)weekly questionnaires in the intervention. Such an integration might help people in reflecting and making the translation from what is learned in the intervention to daily life. In the current setup we assumed that this translation to daily life was strengthened through the inclusion of the proxy in both the reflection based on the questionnaires, the homework assignments, and being present at one PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 20 session. However, according to the exit questionnaire this was not sufficient. Although an alternative explanation is that translation to daily life might also just need some more time.
For example, in an ADHD psychoeducation study (Ferrin et al., 2020), it was shown that effects only emerged six months after the program and not directly after the program finished.
Therefore, we recommend including follow ups with large time scales in future studies.
A third, more speculative, possibility is that participants actually did improve, but not on the outcome measures that were used in the current study. A smaller difference in autism trait ratings might not reflect a better insight in autism traits between participants and their proxy. On the contrary, even though a participant and their proxy may feel different about the
(amount of) autism traits the participant experiences and shows, there may be a sense of a mutual understanding and connection after finishing the psychoeducation program. A participant and their proxy may not agree on certain points, but this does not have to cause problems in daily life, as long as they “agree to disagree”.
Fourth, a remarkable finding is that the participant that improved on half of the secondary outcome measures was the only female subject in the study. This is at most an anecdotal finding, but nevertheless it might indicate that the psychoeducation project in its current form is more appealing or beneficial for female than male older autistic adults.
Lastly, the current program is intended to be used after the more traditional psychoeducation programs currently used. In these traditional programs one focuses on recognizing how being autistic is impacting yourself and your environment, and information is provided on classical autism theories. An intervention effect over and above such a first intervention by focusing on age-related topics might be only a small additive effect. Whether
“Older and Wiser” will have a positive impact when directly provided after receiving a diagnosis is an open question, but the current program was specifically designed as an add-on to a regular psychoeducation program. PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 21
While the current program was co-designed, we could still improve the intervention by involving autistic adults even better. For example, the psychoeducation program could be delivered by both a non-autistic and an autistic trainer. An autistic trainer could provide the participants with lived experiences. Moreover, even though autistic adults read and commented on the previous version of the provided program, scientific language could still be too prominent. Our autistic co-designers were all highly educated and including a broader group of autistic adults co-writing and proofreading the text might results in a decrease of scientific language and an increase of the accessibility of the information provided.
Concluding, this first exploratory study of a co-designed psycho-education program for older autistic adults did yield practical suggestions for improvement of this and future programs and showed that the current program as it currently stands should not be implemented yet. Based on the positive feedback participants gave after completing the program we do however believe that implementing an improved version of a specific psychoeducation program for older autistic adults is still a worthwhile pursuit. Such a psychoeducation program should probably be regularly updated as knowledge regarding this often-neglected group is currently accumulating. Therefore, a more blended (face-to-face group sessions combined with online content) form might be more future proof. PSYCHOEDUCATION FOR OLDER AUTISTIC ADULTS 22
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