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Primenjena psihologija
Vol. 15, No. 4, pp.453-472, 2022
Research Article
Aspects of Mindfulness-Based Intervention to
Reduce Anxiety in Adults with Autism: A
Delphi Study
Eldatia Utari Putri 1, Endang R. Surjaningrum 1 and Afif
Kurniawan 1
1 Clinical Psychology and Mental Health Department, Faculty of Psychology, Universitas
Airlangga, East Java, Indonesia
ABSTRACT
Anxiety is a common psychological disorder often experienced by adults with
autism. Studies suggest a method called Mindfulness to help reduce the disorder.
However, experts have not reached an agreement on what aspects of Mindfulness
are appropriate for adults with autism. Using the Delphi technique, the current study
aims to gather expert consensus on which aspects of Mindfulness can be used to
reduce anxiety in adults with autism. Opinions were gathered from a panel of seven
Mindfulness experts for adults with autism and from adults with autism who had
experience using this method. There were 35 Mindfulness-based intervention items
agreed upon that matched the characteristics of adults with autism, but of these,
only 28 were appropriate. The items are distributed in several sections: preparation,
exercises, concepts, homework, and facilitating autistic characteristics. This
consensus was reached through three rounds. Mindfulness can be seen as an
alternative method for reducing anxiety levels in adults with autism, especially
during social interactions. In addition, it is also possible to apply in a therapeutic
setting. However, several factors need to be considered in advance when this
intervention is to be implemented in Indonesia.
Keywords:
autism, adult with autism, anxiety, Mindfulness, the Delphi technique
Utari Putri et al.
PP (2022) 15(4), 453-472
454
UDK: 616.89-008.48-051.8
DOI: 10.19090/pp.v15i4.2382
Received: 09.12.2021.
Revised: 20.05.2022.
Accepted: 14.06.2022.
Corresponding author email: endang.surjaningrum@psikologi.unair.ac.id
PP (2022) 15(4), 453-472
Mindfulness-Based Intervention for Anxiety
455
Introduction
Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that
begins in childhood and persists into adulthood. Individuals with this disorder
usually have deficiencies in communication and social interaction, repetitive and
restricted behaviors and interests, and hypersensitivity or hyposensitivity to
certain sensory inputs. The prevalence of autistic individuals is estimated at 1%
of the population (American Psychiatric Association, 2013).
Approximately 42% of adults with autism experience anxiety throughout
their lives (Hollocks et al., 2019). The anxiety they experience is not only in
accordance with the Diagnostic and Statistical Manual (DSM) criteria, such as
generalized anxiety and specific phobia, but also ASD-specific anxiety (American
Psychiatric Association, 2013, Halim et al., 2018).
The anxiety is caused by poor executive functioning (Johnston et al.,
2019), an inability to communicate socially, and an inability to cope with
uncertainty and change (Halim et al., 2018; Robertson et al., 2018). Having
restricted and repetitive behaviors, cognitive differences (Stark et al., 2021), and
camouflaging or masking in a social situation (Hull et al., 2017; Schneid & Raz,
2020) can also cause anxiety in adults with autism.
Cognitive Behavioral Therapy (CBT) and Mindfulness-Based Therapy
(MBT) are two common intervention approaches for reducing anxiety in adults
with autism. CBT was found to be moderately effective for symptoms of
depression and anxiety in adults with autism. On the other hand, MBT is more
impactful in reducing anxiety in adults with autism (Conner & White, 2018; Kiep
et al., 2015; Spek et al., 2013).
Mindfulness, both Eastern and Western concepts, was reported to be
significant for people with autism. The Eastern concept which focuses on
moment-to-moment awareness of present experiences and the Western
concept which focuses on alertness and openness to new information have their
respective advantages (Poquerusse, Pagnini, & Langer, 2020). MBT is more
suitable if the individual has high irrational beliefs (Sizoo & Kuiper, 2017).
Utari Putri et al.
PP (2022) 15(4), 453-472
456
However, inappropriate cognitive restructuring and intervention not adapted to
the way of thinking of adults with autism will actually have a more harmful
impact on them (Brede et al., 2020).
Not only can MBT help reduce anxiety, depression, and rumination with
substantial effects (Spek et al., 2013), but it can also reduce autistic symptoms,
improve general mood (Sizoo & Kuiper, 2017) and impulse control (Conner &
White, 2018), reduce physical and psychological symptoms such as anxiety and
depression, and improve general physical and psychological well-being. These
results were found to be stable for 9 weeks after the intervention (Kiep et al.,
2015).
In practice, to be applied to adults with autism, MBT still needs some
modifications to increase its effectiveness (Stark et al., 2021). Modifications can
be made by adapting the total and duration of each intervention session,
avoiding ambiguous metaphors and terms, and discussing individual homework
plans (Kiep et al., 2015; Spek et al., 2013). Another modification is to provide
additional materials, such as the concepts of stress, anxiety, and depression,
which are modified according to the characteristics of adults with autism
(Conner & White, 2018; Sizoo & Kuiper, 2017).
A study found that it takes the ability to think outside the box in dealing
with adults with autism. This ability is related to the need for inventive and
initiative thinking to make the given material be understood (Ainsworth et al.,
2020).
The ability can only be obtained if the clinician has the confidence and
experience and has attended certain intervention training. The lack of research
and empirical knowledge, as well as the lack of training on specific modifications
of standard anxiety interventions in adults with autism, make the intervention
more complicated. Modifications that have been made by clinicians are less
effective because they are generally inconsistent, resulting in differences in
treatment by each clinician (Ainsworth et al., 2020).
It is therefore important to develop specific guidelines (Robertson et al.,
2018) or reach an agreement between clinicians or adults with autism who have
PP (2022) 15(4), 453-472
Mindfulness-Based Intervention for Anxiety
457
used Mindfulness methods. This study applied the Delphi technique to gather
expert opinions to get a consensus on what aspects should be included in a
Mindfulness intervention to reduce anxiety in adults with autism. The results of
this study are expected to provide guidelines for clinicians, psychologists, or
therapists regarding the application of Mindfulness-based interventions in adults
with autism.
Method
Research Design
This study uses a modified Delphi technique. In the first round, the
researcher distributed a questionnaire based on a predefined module rather than
giving open questions to a panel of experts to compose a questionnaire. The
module used in this study is the Mindfulness-Based Stress Reduction (MBSR) by
Jon Kabat-Zinn (2005; Jon Kabat-Zinn, 2017). In the second round, each expert
was asked to rate the items in the questionnaire on a scale of 1 to 9. They were
also allowed to give notes in the note column when they wanted to add
something uncovered in the questionnaire. The analyzed questionnaire was
again sent to a panel of experts in the third round. Each questionnaire was
adjusted individually so that each expert could re-evaluate his/her previous
assessment. The identified items were then analyzed for appropriateness using
the RAND/UCLA Appropriateness Method (RAM) (Fitch et al., 2001).
Ethical approval for the research was granted by the Ethics Committee
for Disability Studies, Center for Disability Studies and Services (CDSS)
Universitas Brawijaya (31/03/2021; No. 037/UN10.C20.11/PN/2021). In this section,
the authors also assert that all procedures in this study are in accordance with
the ethical standards of national and institutional committees on human
experimentation and with the 1975 Declaration of Helsinki, as revised in 2000.
Utari Putri et al.
PP (2022) 15(4), 453-472
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Participants
Participants or so-called an expert panel in this research are those who
have expertise in Mindfulness-based interventions for adults with autism. The
expert panel consisted of (1) psychologists, psychiatrists, therapists, or
counselors who had ever provided this kind of intervention; (2) researchers with
research interest in this issue; and (3) adults with autism who had received the
intervention and/or implemented it independently. In this case, adults with
autism must have adequate cognitive abilities as evidenced by their IQ scores.
The identity of each expert panel is unknown to the other expert panel members.
The research invitations, screening questions, and informed consent
were sent to 25 institutions, 12 researchers, and 12 adults with autism and
clinicians both nationally and internationally regarding their willingness to
participate in this study. The expected number of expert panels was 7 to 15
people, which is considered large enough to represent diversity, but also small
enough to allow each expert to engage in a group discussion (Fitch et al., 2001).
Participant Characteristics
Eight participants completed the informed consent, but only seven
participants completed all three rounds (
Mage
= 40.8;
SDage
= 17.13; 57% male).
Participants were clinicians (
N
= 4; 57%) and adults with autism (
N
= 3; 43%) aged
23-71 years. The adults with autism in this study met the criteria as evidenced by
their IQ scores and their current occupation reflecting their adequate intellectual
abilities, and they were officially diagnosed as ASD. Half of the clinicians had
experience administering this intervention to adults with autism, and the other
half had a research interest in this issue. The adults with autism reported that
they had implemented the Mindfulness-based intervention independently and
all of them lived in Indonesia. Meanwhile, the clinicians were domiciled in
Australia (
N
= 2), the Netherlands, and the United States (Table 1).
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Mindfulness-Based Intervention for Anxiety
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Table 1
Expert Panel Characteristics
Participants Characteristics
N
%
Gender
Male
4
57
Female
3
43
Age
M
= 40.80,
SD
= 17.13
Diagnosis
Autism Spectrum Disorder (ASD)
3
43
Neurotypical
4
57
Adult with Autism Occupation
Undergraduate Student
1
33
Employee
2
67
Clinician Occupation
Psychologist
2
50
Child Psychologist
1
25
Behavioral Therapist
1
25
Also Researcher
2
50
Clinician Experience with Mindfulness
>3 years
3
75
7-11 months
1
25
Residence
Indonesia
3
43
Australia
2
28
The Netherlands
1
14
United States of America
1
14
Data Collection and Analysis
Round 1
The Mindfulness-Based Stress Reduction (MBSR) module by Jon Kabat-
Zinn (2005; Jon Kabat-Zinn, 2017) and a literature review on Mindfulness-based
interventions in adults with autism was used to develop the questionnaire. In
each round, the expert panel was asked to provide their rating, from 1 (“
not
effective
”) to 9 (“
very effective
”), of “How effective is each item at reducing
anxiety in adults with autism?” They were also allowed to add comments in the
“Notes” section.
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PP (2022) 15(4), 453-472
460
Round 2
After completing the informed consent as a statement of willingness,
the questionnaire and general instructions were emailed to the expert panel. The
experts were expected to assess the first questionnaire for a maximum of two
weeks. The experts were alerted on day 7 and day 10 and asked if further
assistance was needed.
Descriptive statistics were applied to the results of this round. A
statement was said to reach agreement when 60% of the experts rated it 6 to 9
(Consensus is reached for inclusion). Meanwhile, an item was considered not to
reach agreement when less than 60% of the experts gave a rating of 6 to 9
(Consensus is reached for not being included). Items that were not agreed upon
were brought to Round 3 along with the new items obtained from the experts`
comments.
Round 3
The questionnaires in this round were individually adjusted based on the
experts` previous assessments and the median scores of all experts`
assessments. Descriptive statistics were applied once again to the results to find
which items reached the final consensus. The items that reached the final
consensus were then analyzed for their appropriateness using the RAND/UCLA
Appropriateness Method (RAM).
An item is considered appropriate when the median score of all experts`
assessments is 7 to 9, with no disagreement. An item is considered uncertain
when the median score of all experts` assessments is 4 to 6, or there is a
disagreement. An item is considered inappropriate when the median score of all
experts` assessments is 1 to 3 (Fitch et al., 2001). The flowchart is given in Figure
1.
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Figure 1. The Flowchart in Each Delphi Round
Results
Round 1
Based on the literature review, 34 statements were obtained and were
divided into five sub-sections: Preparation, Mindfulness Practice, Concept,
Homework, and Facilitating Autistic Characteristics. The prepared questionnaire
had been reviewed by experts and was then translated into English and
proofread by the English language professional to make both national and
international experts have the same and equal understanding.
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PP (2022) 15(4), 453-472
462
Round 2
The results of the descriptive analysis found that 28 statements fell into
"IN" consensus, two statements were "OUT" consensus, and four statements
were "NO" consensus". Besides, two new statements obtained from the experts`
comments were added to the “Facilitating Autistic Characteristics” sub-section,
namely “
Reconfirming the participants' understanding (double-check) regarding
the material and instructions given
” (E6) and “
Providing visual aids to help
participants understand each explanation given
” (E7). Statements categorized in
the “IN” consensus were directly included in the analysis of the results.
Meanwhile, statements that fell into “
NO
” and “
OUT
” consensus were re-included
in the next round along with two new statements.
Round 3
Of the eight statements included in round 3, the statement "
Teaching
Yoga techniques such as standing yoga, mindful hatha yoga, lying-down yoga
"
(B4) did not reach an agreement ("
OUT
" consensus), while the other seven
statements reached an agreement and were included in the RAM analysis. Out
of 35 statements, 28 were appropriate and seven were uncertain.
These “
appropriate
” and “
uncertain”
labels are related to the priority of
delivery in the intervention. Appropriate statements mean that they should be
provided to each client. Uncertain statements, on the other hand, are to be given
after considering the client's condition in advance (adjusting). If the condition is
possible, it can be provided to the client. However, if it is not possible, it does
not need to be given to the client (Table 2).
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Table 2
Items Reaching Consensus
Preparation
RAM Analysis
A1.
Providing an outline of the interventions to be carried out
Appropriate
A2.
Asking for a commitment to be willing to carry out a series of
exercises within and outside the intervention session actively
Appropriate
A3.
Describing emotions (joy, sad, angry, etc.) with concrete explanations
before starting the Mindfulness session
Appropriate
A4.
Explaining or providing cautionary of any possible emergence of
feelings of sadness, anger, or fear during the intervention session that
might be causing discomfort
Appropriate
Mindfulness Practice
RAM Analysis
B1.
Practice awareness of breath (AOB)
Appropriate
B2.
Teaching simple ways of paying attention and being aware of
thoughts, feelings, and sensations in the current state
Appropriate
B3.
Explaining how to refocus attention while doing Mindfulness practice
by not forcing to eliminate certain thoughts, just simply “let it be” and
“let go”
Uncertain
B5.
Teaching Meditation techniques that can be done such as sitting
meditation, or walking meditation, etc. for focusing attention on
breathing
Uncertain
B6.
Teaching body scan techniques
Uncertain
B7.
Teaching several activities that can be done with full awareness such
as mindful eating, speaking, and listening, to practice focusing
attention on the current state
Appropriate
B8.
Discussing the feelings after doing a Mindfulness exercise
Appropriate
B9.
Discussing what can be done to improving Mindfulness practice on
the next session
Uncertain
Concept
RAM Analysis
C1.
Explaining what Mindfulness is
Appropriate
C2.
Discussing the connection between mind and body sensations when
an unpleasant experience happens
Appropriate
Utari Putri et al.
PP (2022) 15(4), 453-472
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C3.
Recognizing the stressful pattern, understanding their feelings, and
how to express them accurately
Appropriate
C4.
Recognizing the physical feelings and sensations that can be aroused
when someone is feeling anxious
Appropriate
C5.
Identifying things that can be anxiety stressors
Appropriate
C6.
Developing more effective ways to respond to negative situations
positively and proactively, so that would be able to cope with
unpleasant experiences (anxiety) faster
Appropriate
C7.
Focusing on individual capacity to adapt to daily challenges, stress,
and anxiety in a daily setting in faster and more effective ways
Appropriate
C8.
Focusing on responding (than reacting) to anxiety stressors
Appropriate
C9.
Adopting Mindfulness for learning to stop, take a step back, and then
see things clearer and more objective so that would be able to make a
decision better
Appropriate
C10.
Improving individual capacity for more effective self-regulating and
anxiety coping
Appropriate
C11.
Improving effective and creative internal communication skills,
especially related to challenging things
Appropriate
Homework
RAM Analysis
D1.
Providing recording of meditation and yoga exercise guides to be
done outside the session
Appropriate
D2.
Providing handout for recording weekly tasks
Appropriate
D3.
Choosing one full-awareness daily routine activity (such as brushing
teeth, watering plants, cleaning home) to be done outside the session
Appropriate
D4.
Identifying stress and anxiety reactions that can automatically occur
and events that cause deadlock or difficulty to do activities
Appropriate
D5.
Improving self-awareness when reacting to something and finding the
right choice to more mindful respond
Appropriate
Facilitating Autistic Characteristics
RAM Analysis
E1.
The facilitator should be understanding the characteristics, the best
way of communication, and the sensitivity of every adult with autism
client
Appropriate
E2.
Providing individual sessions on every meeting to ensure the
understanding of each client
Uncertain
E3.
Eliminating the use of metaphors or words that have multiple
meanings
Appropriate
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E4.
Permitting every client to take breaks if needed
Appropriate
E5.
The facilitator should be cooperating with every client’s significant
others to ensure homework to be done outside the sessions
Appropriate
E6.
Double-checking participants by confirming their understanding while
giving instructions and materials
Uncertain
E7.
Giving visual aids to help participants understand every given
explanation
Uncertain
Discussion
This research is in line with the findings of a research review by
Poquerusse, Pagnini, & Langer (2020) that Mindfulness training for individuals
with autism is a powerful and promising way for them. Therefore, an effective
Mindfulness program for people with autism needs to be created. This current
study found 35 items grouped into five sub-sections: preparation, practice,
concept, homework, and facilitating autistic characteristics. Of the 35
statements, 28 were categorized as appropriate and seven were uncertain.
In the first section, preparation, all statements reach consensus and are
deemed appropriate. An agreement on the statements in this subsection is easier
to reach since they are general therapeutic competencies that are more likely to
get the same views from experts from different backgrounds than a specific
technique of a particular intervention approach (Taylor et al., 2020).
Understanding the emotions of adults with autism before starting an
intervention is considered important, as stated by Ainsworth et al. (2020) and
Spain et al. (2015) that understanding the emotions of adults with autism at the
outset is important before starting the intervention session using certain
techniques in the autistic group.
In the second section, Mindfulness practice, the core practices that reach
an agreement (appropriate) are the concrete activities that can be felt directly
by the five senses. The result is in accordance with the characteristics of
individuals with autism who are easier to understand concrete and detailed
things (Hobson, 2012; Spek et al., 2013). The more concrete and detailed the
instructions, the more likely they are to understand the instructions (Happe &
Utari Putri et al.
PP (2022) 15(4), 453-472
466
Frith, 2006). Meanwhile, the uncertain Mindfulness practices are the activities
that require concentration and complex cognitive understanding. This statement
can only be given to adults with autism who may have this ability.
One of the core Mindfulness characteristics that doesn't reach consensus
is yoga. There are several explanations why yoga does not reach an agreement,
especially if it is applied in Indonesia. The understanding of the term “yoga”, the
strong belief in their religion, and the local tradition of Indonesian can influence
their perspective about yoga.
In Indonesia, yoga which was originally brought by monks is often considered
part of a certain religion, Hinduism. The majority of Indonesians, of whom 87.2%
are Muslim and only 1.7% are Hindu (Central Bureau of Statistics, 2010), commonly
have a different view of yoga. Based on the
fatwa
of the Indonesian Ulema
Council (Majelis Ulama Indonesia
- MUI) in 2009, pure yoga is a religious ritual
activity and contains meditation and mantras which are considered
haram
or
forbidden and a sin for Muslims (Komisi Fatwa MUI, 2009).
Nevertheless, yoga is one of the Complementary and Alternative
Medical (CAM) Interventions often used by adults with autism to improve their
well-being, address specific symptoms, and find solutions to address major
autistic symptoms (Barnett et al., 2014).
This study found that the main aspects of yoga that balance the mind,
body, and soul are still possible to be applied if it is adapted to Indonesian
traditional values. Related to this, Tucker (2013) explains that interventions that
are suitable to be applied to people with autism in Indonesia, especially in Java,
are those that have been adapted to the community values or local daily
practices and which can increase pride in their local/national identity. In this case,
using Javanese traditional music called gamelan as a therapeutic tool will
increase their likelihood to use this particular approach. Using the local values
will make the adults with autism feel confident and secure (Tucker, 2013).
In the third part, Concepts, all items reach consensus and are considered
appropriate. All concepts need to be given to adults with autism, but they need
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467
to be adapted to each individual's understanding, according to the aspects in the
sub-section 'facilitating autistic characteristics' of each participant.
In the fourth section, Homework, all items reach consensus and are
considered appropriate. With weekly handouts and activity lists in hand, adults
with autism can be more comfortable because they already know what will
happen during the intervention session, thereby reducing the possibility of
anxiety due to uncertainty and changes.
The fifth sub-section is Facilitating the Autistic Characteristics of each
Participant. This consensus is in line with the results of research conducted by
Ainsworth, et al., (2020) regarding the importance of continuous support from
significant others such as family or closest friends in dealing with long-term
anxiety in adults with autism (Ainsworth, et al., 2020). Uncertain statements in
this subsection refer to practitioners who need to understand the condition of
each individual (
i.e.,
whether individual sessions, double checks on
understanding, and the provision of visual aids are needed). If they are not
needed, they need not be provided.
Limitation
First, the absence of a standardized definition of a consensus (Diamond
et al., 2014) made researchers set their own standards. The difference in the
selection of agreement norms, being tighter or looser, will allow for differences
in research results (Taylor, et al., 2019). Second, Mindfulness has not been
regarded as the best-practice therapy for adults with autism, so there are not
many experts/researchers in this field. As a result, the response of the willingness
given by the expert is not much (low-response rate). On the other hand, the
researcher also realizes that it is very likely that there are experts out there the
researchers do not know about.
Despite the limited number of experts that were willing to participate,
they still met the minimum standard of between 7-9 people (Fitch et al., 2001).
To increase the validity and obtain larger perspectives or alternatives, the expert
panel of this study was also gathered from various backgrounds such as
Utari Putri et al.
PP (2022) 15(4), 453-472
468
psychologists, researchers, and even adults with autism themselves who are the
main target of the intervention (Powell, 2003).
The prospect of Mindfulness-based intervention application to adults
with autism is still confined to those who have adequate cognitive abilities or
intelligence. There is not much evidence that adults with autism with intelligence
disorder can benefit from the intervention.
Conclusion
In preparation, the therapist needs to provide an explanation of the
intervention to be carried out as well as an explanation of the various emotions.
Mindfulness practices that are suitable for adults with autism are the practice of
awareness of breath (paying attention to what is happening right now) and
some mindful activities that can be done outside of counseling sessions such as
mindful eating, speaking, and listening. Besides, the therapist also needs to
provide a concept about recognizing situations that can be a source of anxiety
and also how to increase self-capacity in dealing with anxiety. Concepts are
given according to the abilities of each autistic adult and the type of facilitation
needed.
In addition, giving homework and facilitating autistic characteristics are
also important. The therapist must really understand the characteristics and
sensitivities of each individual, eliminate ambiguous sentences, and the
importance of building cooperation with significant others to ensure whether
the practice of Mindfulness is well-implemented outside the session.
Based on the limitations, it is recommended for further researchers to
expand the potential participants. Mindfulness practitioners are advised to
increase their understanding of the characteristics of autism to make adults with
autism better understand the concepts provided. As for adults with autism who
experience anxiety, it is recommended to use this intervention either formally by
following a structured intervention by an expert or independently by following
the important aspects found in this study.
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Acknowledgements
We would like to thank all people who participated in this research.
Conflict of Interests
The authors declared no potential conflicts of interest with respect to the
research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or
publication of this article.
Data availability statement
The data that support the findings of this study are available from the
corresponding author upon reasonable request.
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