Interventions to address health outcomes among autistic adults: Asystematic review
Yenn Purkis
Teal W Benevides, Department of OccupationalTherapy, College of Allied Health Sciences, Augusta University, 987 SaintSebastian Way, EC-2324, Augusta, GA 30912, USA. Email:tbenevides@augusta.edu
Issue date 2020 Aug.
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Abstract
Research has shown that autistic adults have poor health outcomes. We conducted asystematic review to identify existing interventions to address health outcomesfor autistic adults and to determine whether these interventions address thepriorities of the autistic community. We searched PubMed for articles thatincluded an intervention, a primary health outcome measured at the individual(not system) level, and a sample population of at least 50% autistic adults.Studies were excluded if they were not peer-reviewed, had a focus on caregivers,were expert opinions on specific interventions, untested protocols, orinterventions without a primary health outcome. Out of the 778 articlesreviewed, 19 were found to meet the stated criteria. Based on the evidencegathered, two were considered emerging evidence-based approaches: cognitivebehavioral approaches and mindfulness. The remaining interventions included inthe review did not have sufficient evidence to support current use with thispopulation. The majority of the studies included samples of young autisticadults, primarily male, without an intellectual disability. Anxiety, quality oflife, depression, and behavioral issues were among the health outcomes measuredin the final included articles. More research on preferred interventions withprioritized health outcomes of the autistic adult population is needed.
Lay abstract
Autistic adults have more health problems then their same-aged peers. Yetlittle research has been conducted that focuses on addressing these healthproblems. In order to guide future research, it is important to know whatintervention studies have been done to improve health outcomes amongautistic adults. The project team and student assistants read studies thatwere published between 2007 and 2018 in the online research database,PubMed. We looked for studies published in English, which were peer-reviewedand included (1) an intervention, (2) an outcome that was related to health,and (3) a study group that included autistic adults. We did not includestudies that had outcomes about employment (unless there was a healthoutcome), studies about caregivers or caregiving, or expert opinions aboutinterventions. Of 778 reviewed articles, 19 studies met all of the criteriaabove. Within these studies, two approaches were found to have emergingevidence for their use in autistic adults: cognitive behavioralinterventions and mindfulness-based approaches for improved mental healthoutcomes. The remaining intervention approaches did not have enough articlesto support their use. Many of the outcomes were about reduced symptoms ofco-occurring mental health diagnoses (e.g. reduced anxiety, depression).Most of the participants in these studies were male and did not haveintellectual disability. Most study participants were adults younger than40. There are not many intervention studies that address health outcomesamong autistic adults. More research is needed on interventions which aredesired by the adult autism community and address preferred health outcomessuch as increased quality of life or well-being.
Keywords: adult, autism spectrum disorder, intervention, systematic review
Introduction
Much of what is known about the health and healthcare needs of autistic adults hasemerged from health services research documenting the frequency of co-occurringconditions, types of healthcare received, and costs of care. Health servicesresearch suggests that autistic adults have different healthcare needs thansame-aged peers without autism spectrum disorder (ASD;Croen et al., 2015;Zerbo et al., 2019). Within the literature,poor healthcare outcomes have been identified among autistic adults, such as earlydeath/mortality (e.g.Bilder etal., 2013), increased rates of psychiatric emergency departmentutilization (e.g.Vohra et al.,2016), and less use of preventive care visits for cancer screenings(Nicolaidis et al.,2014,2015).Utilization and costs are also higher among autistic adults in a privately insuredlarge healthcare group (e.g.Zerbo et al., 2019). It is reported that autistic persons face multiplechallenges which are specific to autism, as it applies to accessing healthcare(Burke & Stoddart,2014).
Although poor health outcomes have been frequently documented, few studies haveevaluated the efficacy of interventions to address individual health outcomes in theautistic population. The majority of spending on autism research continues to fundgenetic and other research aimed at targeting brain mechanisms, risk factorsfocusing on prevention of ASD and causes of ASD, and interventions that primarilytarget children (InteragencyAutism Coordinating Committee (IACC), 2016). According to theIACC (2016), research onautistic adults comprises approximately 2% of the nationalfunding from both public and private sectors. There is an urgent need to understandthe available literature on effective interventions to improve health outcomes forchildren aging into adulthood.
The purpose of this systematic review was to comprehensively identify interventionsused with autistic adults to address health outcomes and to evaluate the quality ofavailable interventions. The specific systematic review question asked by ourproject team was “What interventions (I-intervention) implemented for individualsare currently documented in the literature that evaluate the impact onhealth-related outcomes (O-outcome) for autistic adults (P-population)?” The resultsof this systematic review were reviewed by autistic research partners to identifywhich interventions were important to the autistic adult community in order tofurther contribute to the recommendations based on the available literature.
Methods
Our systematic review protocol was developed using the Preferred Reporting Items ofSystematic Reviews and Meta-Analyses document (PRISMA;Appendix 1) (Moher et al., 2009). In addition toimplementing a systematic search of the literature, we also ensured applicability ofour results through using participatory-action research approaches to check ourresults with 18 paid community research partners (Community Council) to makerecommendations based on available literature and community priorities. Communitypartners held multiple roles, including professional roles as researchers andmedical/mental health professionals, authors, and advocates; most identified as anautistic adults and/or a parent of an autistic adult. Based on their involvement inthe study activities, all Community Council members were offered the opportunity tobe authors, acknowledged contributors, or if preferred, not acknowledged byname.
Included study characteristics
We used clear definitions to ensure that inclusion and exclusion criteria wereapplied systematically during the review process to select relevant studies(Table 1).Inclusion criteria for relevant studies were defined as follows: populationinclusion required having a sample in which at least 50% of the study sample was18 years or older and having a sample in which the primary study population wereindividuals identified as having an “autism spectrum disorder.” Due to thechanges in diagnostic criteria when changing from theDiagnostic andStatistical Manual of Mental Disorders (4th ed.; DSM IV) toDiagnostic and Statistical Manual of Mental Disorders (5thed.; DSM-5;AmericanPsychiatric Association, 2013), we ensured that studies whichreferred to study populations with outdated terms (e.g. “high-functioningautism,” “Asperger’s syndrome,” and/or “Pervasive-Developmental Disorder nototherwise specified”) were also included. Studies were included even if they didnot contain a confirmatory diagnostic assessment; participant characteristicsfrom included studies can be found inAppendix 4.
Table 1.
Definitions guiding selection of included studies.
| Population: Studies were included if 50% of thestudy population was greater than 18 years of age (thesample must explicitly examine an adult group separately, ifthere is a range of ages). The majority of the sample mustinclude autistic adults, which includes those with olderrecognized diagnoses such as Asperger’s syndrome,high-functioning autism, autistic disorder, and pervasivedevelopmental disorder—not otherwise specified. Health: “a state of completephysical, mental, and social well-being, and not merely theabsence of disease or infirmity” (World Health Organization(WHO), 1948). Intervention:Interventions in our study must address an individual’shealth needs and be aimed at intervening at the individuallevel. We excluded interventions aimed at addressingorganizational or system interventions (e.g. procedures andpolicies that impact many individuals). We did not includeinterventions aimed at caregivers of autistic adults. Health and health outcomes:Physical and mental health outcomes aimed at addressing anindividual’s personal health or well-being, including butnot limited to ameliorating specific chronic or physicalhealth conditions (e.g. cardiovascular outcomes; managementof weight), mental health outcomes (e.g. depression,anxiety) or mental well-being, mortality and morbidity, orquality of life. We excluded outcomes that were measured atthe family, community, or health-system level (e.g. annualcheckups, access to healthcare, insurance payment andcoverage, or system quality indicators (e.g. coordinatedcare, timely physician communication, indicators ofpatient-centered medical homes). |
We includedInterventions that addressed at least one physical,mental, and/or social health outcome. Due to the focus at the time of the reviewon individual-level (as opposed to system-level) interventions, our searchincorporated interventions where the autistic adult was the target ofintervention. We included studies withOutcomes which addressed‘health’ (defined inTable1).Study type was not specified as aninclusion/exclusion criterion; therefore, we included all qualitative andquantitative evidence of any level (I–V) as long as it met the above criteria.We limited studies to those published in the English language which wereconducted with human participants (no animal studies) and were published in thepast 10 years (in year 2007 or later) at the time of the last search.
We specifically excluded studies that were not published in peer-reviewedjournals (e.g. newspaper or magazine articles), articles that discussedcaregiving or families of autistic adults (e.g. focused on interventions forcaregivers of adults), expert opinions regarding interventions, protocols ofinterventions which had not been tested, and vocational or educationalinterventions which did not have a physical or mental health outcome as aprimary outcome of the study. Educational and vocationalinterventions were defined as those conducted in post-secondary educationsettings or work/vocational settings (simulated, volunteer, or paid).
Information sources and article management
For this review, we searched the largest existing medical database, PubMed, whichcontains both self-archived and peer-reviewed journal archived records. Wetrialed search terms in early 2017 with the assistance of a medical librarian,and the final search string was implemented on October 14, 2017 (Appendix 2). The useof Medical Search Headings (MeSH) and Boolean operators was used to ensuresearch terms were combined to meet our research question as posed above.
Screening and selection process
Following implementation of the PubMed search described above, all relevantarticle records were downloaded by title and abstract into the reference managersoftware EndNote® Version X7.7.1. The process for screening studiesincluded dividing of relevant records among a team of six graduate researchstudents, use of folders in EndNote to track included and excluded articles, andregular meetings with the principal investigator to review questionable titlesor abstracts. All authors involved in article selection underwent training withpractice screening using study definitions. In addition, a random selection of10% of originally identified records was checked by the principal investigator(T. B.) to ensure reliability in screening to include/exclude articles. Duringthe title/abstract screen, articles that clearly met our inclusion criteria wereretained. Articles which were questionable based on title or abstract were alsoretained for full-text review. Articles identified for full-text screen wereobtained in full-text PDF and stored offline. We evaluated all PDFs using thesame inclusion/exclusion criteria and excluded articles were documented withreasons (available upon request).
Following the first review of available studies, the Community Councilrecommended targeted searches of the literature for specific desiredinterventions identified during priority-setting activities (Benevides et al., 2020).A second search of PubMed was conducted for specific interventions includingcognitive behavioral therapy (CBT), use of medical marijuana, animal-assistedtherapy, and trauma-informed interventions. Using the same terms for thePopulation, but adding specific keywords and MeSH terms for interventions,resulted in additional articles for screening (Appendix 3). The last search wasconducted 8 August 2018. Once limits for “adults 18+ years” were applied, thetitles and abstracts were screened to ensure they met inclusion criteria usingthe same process as the previous search.Figure 1 illustrates the flow of articlesin our study (Moher et al.,2009).
Figure 1.
PRISMA flow diagram of included and excluded studies from bothsearches.
Evaluation of risk of bias in included studies
Included studies were evaluated using risk of bias criteria proposed by theCochrane group (Higgins etal., 2011). Because we did not find many randomized controlled trials(RCTs), we anticipated that the overall risk of bias in studies was high. Therisk of bias was taken into consideration when evaluating the certainty of theavailable evidence as a whole.
Data extraction
We extracted the following data from included studies: Title, author, year; studydesign; characteristics of the interventions, and characteristics of includedparticipants. We extracted characteristics of the interventions in includedstudies such as intervention type (using categories defined byYoung and colleagues(2010), duration/frequency/intensity of intervention(s), healthoutcome measured, and location where intervention was conducted. Characteristicsof study participants were extracted across the articles and included mean ageof all study participants, gender distribution (percent males), diagnosis type,and percentage of those in study sample with intellectual disability (Appendix 4).Qualitative synthesis of results across the articles were planned to identifythemes of available interventions, whether the existing studies aligned withearly priorities identified by the autistic adult community and whether specificgaps existed in available evidence.
Certainty of available evidence
We used guidelines proposed by theNational Professional Development Center onAutism Spectrum Disorder (n.d.) and Centers for Medicare and Medicaidto define evidence-based practices for children with autism (Young et al., 2010).Interventions were considered to be “Evidence based” if there were two or morehigh-quality RCTs to support that intervention or if there were fivehigh-quality single-subject designs conducted by at least three differentresearch groups and having at least 20 research participants across allsingle-subject designs. “Emerging evidence” was evidence in which there were twoor more studies which existed that were of lower quality or less-rigorous studydesign, and the available evidence showed some or no effect, and did not producenegative effects on participants (e.g. poor outcomes). “Unestablishedinterventions” was evidence in which studies showed negative effects on outcomesof the participants, or all the available studies on that intervention showed noeffect, or there was only one study with that intervention which was availablefor review.
Results
Among the 778 articles obtained from our PubMed searches, we identified 19 studieswhich met our inclusion/exclusion criteria. Among the included studies, the overallrisk of bias across all available intervention studies was high (Table 2). The majority ofincluded studies used a case report or case series design (n = 7;37%), with very little description of the methods used to confirm autism diagnosis,implementation methods, and measure outcomes (Enticott et al., 2011;Hsieh et al., 2014;Nilsson & Ekselius,2009;Roser et al.,2009;Sajith et al.,2017;Wachtel et al.,2010;Weiss &Lunsky, 2010). Three studies (16%) used a single-subject design (Brundage et al., 2013;Campillo et al., 2014;Tiger et al., 2009);however, only two of those included a multiple baseline design as a control. Threestudies (16%) used a pre-test–post-test single group design; these had no controland thus were unable to control for most threats to internal validity (Ekman & Hiltunen, 2015;Gal et al., 2015;Siew et al., 2017).Two studies (10%) used a pre-test–post-test non-equivalent control group design, andboth were considered high-quality quasi-experimental designs (McGillivray & Evert, 2014;Sizoo & Kuiper, 2017).Four studies (21%) used a randomized controlled design to examine the effect of anintervention for adults (Hesselmark et al., 2014;McVey et al., 2016;Russell et al., 2013;Spek et al., 2013).
Table 2.
Risk of bias in included studies.
| Author(s) (year) | Study design | Controla | Random sequence generation | Allocation concealment | Blinding of participants and personnel | Blinding of outcome assessors | Incomplete outcome data (attrition) | Selective reporting |
|---|---|---|---|---|---|---|---|---|
| Brundage et al. (2013) | Single-subject ABAB design | + | − | − | − | − | + | + |
| Campillo et al. (2014) | Single-subject AB design | − | − | − | − | − | + | + |
| Ekman & Hiltunen (2015) | Pre-test–post-test single group | − | − | − | − | − | ? | + |
| Enticott et al. (2011) | Case study | − | − | − | − | − | − | − |
| Gal et al. (2015) | Pre-test–post-test single group | − | − | − | − | − | − | + |
| Hesselmark et al. (2014) | Randomized controlled trial | + | + | + | − | − | + | + |
| Hsieh et al. (2014) | Case study | − | − | − | − | − | − | − |
| McGillivray& Evert (2014) | Pre-test–post-test non-equivalent control group | + | − | − | − | − | + | + |
| McVey et al. (2016) | Randomized controlled trial | + | ? | ? | − | − | + | + |
| Nilsson & Ekselius (2009) | Case study | − | − | − | − | − | − | − |
| Roser et al. (2009) | Case study | − | − | − | − | − | − | − |
| Russell et al. (2013) | Randomized controlled trial | + | + | + | − | + | + | + |
| Siew et al. (2017) | Mixed methods with pre-test–post-test single group | − | − | − | − | − | + | + |
| Sajith et al. (2017) | Case study | − | − | − | − | − | + | − |
| Sizoo & Kuiper (2017) | Pre-test–post-test non-equivalent control group | + | − | − | − | − | − | + |
| Spek et al. (2013) | Randomized controlled trial | + | + | + | − | − | + | + |
| Tiger et al. (2009) | Single-subject ABABC | + | − | − | + | − | + | + |
| Wachtel et al. (2010) | Case study | − | − | − | − | − | + | + |
| Weiss & Lunsky (2010) | Case series | − | − | − | − | − | + | + |
+ = Low risk of bias; — = High risk of bias; ? = Unclear risk ofbias.
For the purposes of single-subject designs, the use of a stable baselineand a stable withdrawal phase was considered an adequate control. Forother study designs, control was achieved with a comparison group thatwas equivalent to the treatment group upon pre-testing.
Synthesis of available interventions
Table 3 presentscharacteristics of available interventions and extracted data from each study.Cognitive behavioral interventions are considered anemergingevidence-based approach for improving self-reported mood andanxiety symptoms among autistic adults, based on the availability of six studies(32% of identified literature): two RCTs (Hesselmark et al., 2014;Russell et al., 2013),two quasi-experimental designs (McGillivray & Evert, 2014;Sizoo & Kuiper,2017), one pre-test–post-test single-group design (Ekman & Hiltunen,2015), and one case series (Weiss & Lunsky, 2010). Theavailable evidence from RCTs suggests, however, that CBT is not significantlybetter than other alternative interventions such as “anxiety management” or“recreational groups,” but that CBT does result in small clinical effects onself-reported outcomes (Cohen’sd range: 0.31–0.33) and largeeffect for blinded assessor ratings of obsessive-compulsive behavior outcomes(d = 1.01). All of the available CBT studies were conductedwith autistic individuals who were verbal and who had no apparent intellectualdisability. The most commonly occurring CBT approach used was group CBT, rangingfrom a total exposure of 12–108 h of therapy, with most studies providing amedian of 18.75 h of total therapy. All group CBT studies delivered theintervention weekly, using a manualized approach with adaptations for adults onthe spectrum. Of the two RCTs investigating this approach, they differed greatlyin the format (one used a group CBT format and the other used individualsessions). Neither RCT reported negative outcomes of their CBT that wouldsuggest they were detrimental to the health outcomes. This approach requiresadditional investigation in comparison with alternative interventions, and todetermine the point at which clinical effects are observed. Although both RCTstudies examined long-term outcomes to determine whether effects were maintainedafter discontinuation of the CBT, high rates of missing data substantiallyimpact interpretation. Future research of this approach should include long-termfollow-up with participants.
Table 3.
Study characteristics of included studies.
| Author | Intervention type | Intervention (frequency, intensity,duration) | Comparison (frequency, intensity,duration) | Health outcome measured | Country conducted |
|---|---|---|---|---|---|
| Brundage et al. (2013) | Language (behavioral) | Fluency rules program plus social pragmatic treatment(two/week for 50 min, for 13 weeks) | Social pragmatic treatment using Garcia Winner’s ThinkSocial! Model (two/week for 50 min, for 9 weeks) | Stuttering rates (audio recorded) | USA |
| Campillo et al. (2014) | Assistive technology (software) | Tic-Tac software to visually display waiting times between 3and 10 min each session | No software used, intervals of 3–10 min waiting periods | % waiting intervals with anxiety-related behavior (videoobservation) | Spain |
| Ekman & Hiltunen (2015) | Cognitive behavioral intervention | Individual CBT modified with visualization for anxiety andcommunication style (not manualized) (one/every 2 weeks,45–60 min/session for 15 sessions) | None | Individualized goals based on self-reported estimated levelof anxiety and desired target behaviors | Sweden |
| Enticott et al. (2011) | Medical | Deep transcranial magnetic stimulation (5 Hz, ninetreatments over 11 days, each treatment including thirty10-s rTMS with 20-s interval) | None | Self-reported social-relating and interpersonalunderstanding | Unclear (Australia or Israel) |
| Gal et al. (2015) | Vocational | Vocational training course (simulation) (6 h/day,5 days/week, for 3 months) followed by actual workenvironment (6 h/day, 5 days/week, for 3 months) | None | Self-reported quality of life, subjective well-being | Israel |
| Hesselmark et al. (2014) | Cognitive behavioral intervention | Manualized group CBT (one/week for 3 h, for 36 weeks) | Recreational group activity (one/week for 3 h, for36 weeks) | Self-reported quality of life, self-esteem, psychiatricsymptoms | Sweden |
| Hsieh et al. (2014) | Medical | Medical treatment in intensive care unit followingrespiratory emergency | None | Medical, behavioral outcomes (observed) whileventilated | USA |
| McGillivray & Evert (2014) | Cognitive behavioral intervention | Group intervention using CBT and established literature.Outline of 9-week program available (one/week for 2 h, for9 weeks) | Waitlist | Self-reported depression, anxiety, and stress | Australia |
| McVey et al. (2016) | Social skills intervention | Manualized PEERS® for Young Adults (one/week for90 min, for 16 weeks) | Waitlist | Parent and self-reported social phobia, social anxiety,loneliness | USA |
| Nilsson & Ekselius (2009) | Medical | Electroconvulsive therapy (5.6–7.0 s stimulations on righthemisphere, three/week, for 4 weeks) | None | Unclear measurement of obsessive-compulsive behaviors,catatonia-like behaviors, panic attack, and hypochondriabehaviors | Sweden |
| Roser et al. (2009) | Medical | Paliperidone (6 mg/day during 1 week hospital stay, followedby 4 months outpatient treatment) | None | Unclear measurement of anxiety, “distress with psychoticfeatures” | Germany |
| Russell et al. (2013) | Cognitive behavioral intervention | CBT for OCD using exposure and response prevention, adaptedfor autism (manualized) (1 h/session, for 7–20sessions) | Anxiety management (manualized) (1 h/session, for 7–20sessions) | Interview assessment of co-occurring obsessive-compulsivesymptoms | United Kingdom |
| Siew et al. (2017) | Peer mentoring | Peer mentoring with one-on-one support for individual needs(weekly meetings for 5 months) | None | Self-reported well-being, social anxiety, communicationanxiety | Australia |
| Sajith et al. (2017) | Medical | Electroconvulsive therapy (varied intensity, duration, andfrequency) | None | Aggression and catatonia (observed), “aberrant behavior”(unclear—possibly parent reported) | Singapore |
| Sizoo & Kuiper (2017) | Complementary/integrative medicine intervention Cognitive behavioral intervention | Manualized group cognitive behavioral therapy adapted forautism (one/week for 90 min, for 13 weeks) | Group mindfulness-based stress reduction (one/week for90 min, for 13 weeks) | Self-reported anxiety and depression scores, mood,rumination | Netherlands |
| Spek et al. (2013) | Complementary/integrative medicine intervention | Mindfulness-based therapy, adapted for adults with ASD(one/week for 2.5 h for 9 weeks) | Waitlist | Self-reported depression, anxiety, rumination symptoms | Netherlands |
| Tiger et al. (2009) | Behavioral intervention | Differential reinforcement of other behavior | None | Skin picking (observed) | USA |
| Wachtel et al. (2010) | Medical | Electroconvulsive therapy | None | Self-injurious behavior, aggression, disruptive behavior(observed) | USA |
| Weiss & Lunsky (2010) | Cognitive behavioral intervention | Group CBT using manualized “Mind over Mood” (one/week for1 h for 12 weeks) | None | Self-reported depression and anxiety symptoms | Canada |
Mindfulness approaches are also considered anemerging evidence-basedapproach for autistic adults based on two high-quality studiescomprising a RCT and a pre-test–post-test non-equivalent control group(quasi-experimental) design. These studies used manualized group mindfulnessapproaches to address self-reported health outcomes of depression and anxietyamong autistic adults without intellectual disability (Sizoo & Kuiper, 2017;Spek et al., 2013), oneof which was discussed above because the mindfulness was compared to group CBT.Neither study reported negative outcomes, and both studies had effect sizes atthe end of treatment ranging fromd = 0.07–0.78 forself-reported depression symptoms and effects betweend = 0.37–0.76 for self-reported anxiety symptoms. Mindfulnessapproaches were implemented once a week for 1.5–2.5 h a session, for 9–12 weeks,resulting in a total number of hours of exposure to treatment between 19.5 and22.5 h. These studies were conducted with autistic adults with no apparentintellectual disability.
Among the included studies, 32% (n = 6) implemented medicalinterventions to address health outcomes among autistic adults (Table 3), with themost frequently occurring medical intervention being “electroconvulsive therapy”(ECT;n = 3 studies;Nilsson & Ekselius, 2009;Sajith et al., 2017;Wachtel et al.,2010), one study describing the use of a pharmacological intervention(Roser et al.,2009), one study describing a multi-component intervention in theintensive care unit for respiratory distress (Hsieh et al., 2014), and one studydescribing the use of deep transcutaneous magnetic stimulation to the brain(Enticott et al.,2011). None of the medical interventions used strong study designs,and a high risk of bias is present for these interventions; thus, all medicalinterventions are considered to beunestablished evidence forintervention.
For ECT specifically, only four cases of adults ages 19–38 years, primarily withco-occurring intellectual disability, have been reported in the peer-reviewedliterature to use this intervention (Nilsson & Ekselius, 2009;Sajith et al., 2017;Wachtel et al.,2010). None of the participants provided their own consent toparticipate (parental consent was obtained in all cases). ECT is an invasivemedical procedure in which electrical waves are transmitted to the brain. All ofthe studies which implemented this type of intervention described the effects onsocial behaviors, psychological symptoms such as obsessive-compulsive behaviors,and self-injurious behaviors. One ECT study reported a negative response (Sajith et al., 2017)with worsening symptoms prompting discontinuation of ECT treatment. Due to thehigh risk of bias in these studies, and negative response in one of four cases,electroconvulsive therapy is anunestablished intervention.
The remaining identified studies used a variety of intervention approaches toaddress different health outcomes, but due to the types of study designs andlimited available evidence, all are considered to beunestablishedinterventions.
Participant characteristics from included studies are provided inAppendix 4. Themajority of included studies examined interventions in autistic young adults,with mean ages of samples in the mid-20-year-old range. Very few studiesdiscussed interventions with autistic adults over the age of 40 years, with onlytwo studies having an approximate mean sample age over 40 years (Spek et al., 2013;Weiss & Lunsky,2010). A large number of studies (42%) included only male samples.Finally, the majority of participants in included CBT and mindfulness studieswere considered to be “high-functioning ASD” or “Asperger’s syndrome.” Medicalinterventions were primarily used with autistic adults with correspondingintellectual disability.
Discussion
Our systematic review of the literature revealed few available interventionapproaches aimed at addressing health outcomes among autistic adults. The twoprimary intervention approaches considered to haveemergingevidence were cognitive behavioral interventions andcomplementary/integrative mindfulness interventions, both aimed at reducingpsychiatric symptoms (e.g. depression, anxiety, obsessive-compulsive disorder) inautistic adults without intellectual disability. Others have found that cognitivebehavioral interventions are of benefit to autistic children (e.g.Weston et al., 2016), asare mindfulness interventions (e.g.Cachia et al., 2016) and our study suggeststhere is evidence for these approaches in adults 18 years and older.
Many of the interventions reviewed in this study did not have sufficient evidencesupporting their use in autistic adults. Future research is needed to betterunderstand the effect of social skill interventions to address social anxiety,vocational interventions to address quality of life, and technology applications forreduced anxiety. In our review, ECT (n = 3 studies), transcranialmagnetic stimulation (TMS;n = 1), pharmacological(n = 1), and a behavioral paradigm (n = 1)were used primarily on autistic adults with intellectual disability. Theseinterventions were not identified as interventions that were desired by the autisticcommunity (Benevides et al.,2020), and significant distrust of medical treatments such as theseshould be recognized by the research community. Whether an intervention is viewedpositively by autistic people is an important consideration, in addition to itsevaluated effectiveness, given autistic people will be participants in theseinterventions. In addition, none of the included studies in our review reportedusing community–stakeholder partnership in evaluating the interventions.
No studies were found that addressed integrative health approaches through yoga,animal-assisted therapy, or tai-chi for this population, despite autistic communityreported interest in research for these topics. In addition, the adult autisticcommunity desires evidence-based information about medical marijuana for anxiety andother mental health symptoms but no studies were identified that examined thisintervention for this population. Although these interventions are being reported asuseful anecdotally in the adult autistic community, well-designed comparativeeffectiveness research has not yet been developed.
Community council review of findings
The purpose of involving the Community Council was to provide an informed opinion tothese findings that reflects autistic people’s shared ownership of the researchnarrative, as related to the presented evidence. The importance of includingcommunity members in patient-centered outcomes research is necessary for scientificcommunities to address what is deemed to be important and to understand perceptionsof existing or available approaches. All 18 Community Council members (78% of whomidentify as autistic) were provided with both the long report and lay summary of thepreliminary review of the literature and were asked to respond to several questionsrelated to the results in June 2018. Community Council members were asked thefollowing questions: “Would you recommend any of the existing interventions that wefound? If yes, which? If no, why not?” and “What other interventions or approacheswere not in the list, but should be considered for autistic adults?” In all, 13Community Council contributors provided emailed responses (72%); responses werecollated across many individual contributors. Once the systematic review wascompleted, all Community Council members were again invited to be authors if desiredand were asked to provide written input to the discussion and conclusions of thisreport.
CBT for improving mental health
In the general population, CBT is a well-established, evidence-based interventionfor anxiety, with over 50 years of research and successful applicationdocumented (e.g.Higa-McMillan et al., 2015). Some people with autism spectrumconditions find CBT very helpful in alleviating their anxiety or depressionsymptoms. The goal of CBT is to enable people to take control of how theyinterpret and deal with things in their environment. Modifications to CBT foryoung autistic individuals in order to tailor approaches for coping skills andexposure appear to be an important component of evaluated studies. Theimplementation of these protocols always incorporates modifications to standardCBT and should be considered as one approach to assist the individual inself-management of their anxiety. Additional evaluation of these approaches forolder autistic adults and the long-term impact of such interventions isnecessary. It should be noted that some autistic people report that CBT isunhelpful for them. There is not a “one-size-fits-all” approach to therapy.However, others find the practical and action-based nature of it helpful (Purkis et al.,2016).
Mindfulness-based interventions for improving mental health
Contrary to CBT, mindfulness-based interventions focus on modifying anindividual’s thoughts and emotions, by separating themselves from these thoughtsand emotions (Conner &White, 2017), with the goal of improved emotional regulation andself-awareness. In everyday settings, mindfulness approaches are being used byautistic adults because of the ease and availability of apps and other onlinetools. When used outside of the context of research, the implementation ofmindfulness techniques varies in duration, frequency, and intensity; they arenot likely implemented in the same manner as those that were researched in thisreview. Mindfulness is often seen by autistic adults as being helpful fordecreasing stress, anxiety, ruminating thoughts, anger, and aggression becauseit enables people to safely observe their world and themselves. It can be apositive and self-caring strategy that both centers a person to reality butgrounds them in a less volatile or stressful way of being at the same time.Future research should aim to examine the ease of use, cost, and long-termbenefits of mindfulness approaches, including those that are accessed throughapps by individuals on their own, as compared to other available approaches.
Social skills interventions for improving health
The use of PEERS® for Young Adults intervention (McVey et al., 2016), which is agroup-based intervention targeting social skills, has preliminarily been shownto address social anxiety in a moderately sized sample. Community Council membercontributors reflected on the importance of social skills for ensuringrelationships with others in work and personal lives are healthy. Some autisticswho ascribe to a social model of disability see some social skills interventionsas teaching camouflaging. Camouflaging has been identified as one of thepredictors of suicidality (e.g.Cassidy et al., 2018). In addition, somesocial skills interventions present specific behaviors as negative or wrong, andtherefore might promote feelings of shame as related to features of autism thatare part of one’s identity. It is recommended that all interventions whichinvolve and aim to support autistic adults, including social skillsinterventions, include their feedback and input during the development andevaluation of the content.
Vocational interventions and health
Remarkably, while there are many vocational and employment interventions thatexist within the field of autism research, only one was identified as measuringa health outcome, quality of life (Gal et al., 2015). Community Councilmembers reflected on the importance of measuring quality of life outcomes, nomatter the intervention, as quality of life is an essential indicator ofhealth.
Prescription medication and dosing
Few studies examined the impact of pharmacological or medical interventions,despite the high rate of use by medical practitioners. The autistic communityhas anecdotally reported that medication side effects and dosing are not wellevaluated, and use of medications is felt to be poorly tolerated. Evaluation ofmedication use and side effects among autistics is needed and should involve theautistic community in their development of research.
Along with prescription drugs, other Community Council members described the needfor studies on cannabidiol drugs (CBDs) and other forms of medical marijuanawhich has possible anxiety-reduction effects. The careful study of this for theautistic adult population has not been addressed in the peer-reviewedliterature, despite increasing numbers of states that consider autism aqualifying condition for its use.
ECT
It is important to note that none of the Community Council felt that ECT was anappropriate intervention for autistic individuals. Major concerns from theCommunity Council were raised related to this intervention approach, includingpossible damage to the brain, memory, and the extensive risks associated withthis approach.
TMS
Community Council members did emphasize the importance of distinguishing ECT fromTMS. The majority of Community Council members asked for more information aboutthis approach, as very little is known about its use.
Gaps in the literature
Many Community Council members identified the lack of studies on aging andinterventions to address the health of aging autistic adults. Palliative andend-of-life care, dementia care, and addressing chronic health conditions thatoccur during the course of normal aging are unaddressed topics, especially giventhe preponderance of studies on young adults in the found literature. Addressingthe sensory, social, and physical environmental changes that occur as someoneages in place is an un-researched area in autism; moreover, there is a need tounderstand proprioceptive and vestibular differences in autism across thelifespan which impact health and well-being.
There were other gaps identified within this review that deserve mention.Interventions that were identified as future areas for research includedhomeopathic medicine, animal- and equine-assisted interventions, and otherevidence-based interventions identified in the general population as improvingdepression and anxiety (e.g. exercise, nutrition, wellness interventions), noneof which have been comprehensively evaluated for the autistic adultpopulation.
Limitations and conclusion
This review was conducted over multiple years, with the last date of search in 2018.Due to the rapid growth in research for addressing autistic adult needs, it ispossible that some literature has been missed that was either in press or notindexed at the time of searching, or not captured by the specific search criteriaused. Future reviews are important, given the expected growth in this literature. Inaddition, this review was limited by significant heterogeneity in outcome measures,interventions, and population characteristics. Given the state of the literature, itwas difficult to make firm conclusions regarding available evidence. Future work toconduct meta-analyses will depend on literature that both include similar outcomesand interventions.
Our systematic review specifically aimed to identify available interventionsconducted with individuals, to better understand the evidence that supports healthoutcomes for autistic adults. Our study, however, excluded available interventionswhich aimed to improve system-level outcomes which impact access to care,availability of care, and quality of care. These are important interventions whichare also prioritized by the autistic community, but were not included in ourreview.
A large number of studies were excluded which described educational or vocationalinterventions; however, the studies addressed post-secondary education outcomes orwork/vocational outcomes (e.g. work-related behaviors) only. Although work outcomesare meaningful for improved quality of life, one recommendation is that researcherswho examine work-related interventions also include measures of health, quality oflife, and well-being.
In order to address chronic health conditions, we recommend testing evidence-basedinterventions in collaboration with autistic adult research partners to determinewhether they are as effective and accepted in this population. None of the includedstudies in our review reported using community–stakeholder partnership in evaluatingthe interventions.
Our study is the first, to our knowledge, to comprehensively review availableinterventions that address health outcomes for autistic adults.Emergingevidence supports the use of cognitive behavioral interventions adaptedfor autistic individuals without intellectual disability for improving depression,anxiety, and obsessive-compulsive behaviors. In addition, mindfulness-basedapproaches are anemerging evidence-based practice to improvemental health outcomes for autistic adults without intellectual disability. Furtherwork to define and measure quality of life outcomes as the result of theseinterventions, as well as investigation into other intervention approaches currentlybeing used by this population to address health and well-being, is needed.
Acknowledgments
We wish to gratefully acknowledge the contributions of our Autistic Adults and otherStakeholders Engage Together (AASET) Community Council (CC) members. The CC memberswho participated in our project and who provided input throughout the project periodare (in alphabetical order): Daria Blinova Tyrina, Amy Gravino, Becca Lory, LianeHolliday-Wiley, Jamie Marshall, Lindsey Nebeker, Kate Palmer, Bill Peters, and CyndiTaylor. We also acknowledge the project team members who helped organize and managesome AASET project activities: Alex Plank and Patricia Duncan.
Appendix
Appendix 1.
PRISMA checklist.
| Section/topic | No. | Checklist item | Reported on page no. |
|---|---|---|---|
| TITLE | |||
| Title | 1 | Identify the report as a systematic review, meta-analysis, orboth. | Title page |
| ABSTRACT | |||
| Structured summary | 2 | Provide a structured summary including, as applicable:background; objectives; data sources; study eligibilitycriteria, participants, and interventions; study appraisal andsynthesis methods; results; limitations; conclusions andimplications of key findings; systematic review registrationnumber. | Abstract |
| INTRODUCTION | |||
| Rationale | 3 | Describe the rationale for the review in the context of what isalready known. | 2 |
| Objectives | 4 | Provide an explicit statement of questions being addressed withreference to participants, interventions, comparisons, outcomes,and study design (PICOS). | 2 |
| METHODS | |||
| Protocol and registration | 5 | Indicate if a review protocol exists, if and where it can beaccessed (e.g. Web address), and, if available, provideregistration information including registration number. | 2 |
| Eligibility criteria | 6 | Specify study characteristics (e.g. PICOS, length of follow-up)and report characteristics (e.g. years considered, language,publication status) used as criteria for eligibility, givingrationale. | 2, 3 Table 1 |
| Information sources | 7 | Describe all information sources (e.g. databases with dates ofcoverage, contact with study authors to identify additionalstudies) in the search and date last searched. | 3 |
| Search | 8 | Present full electronic search strategy for at least onedatabase, including any limits used, such that it could berepeated. | Appendix 2, 3 |
| Study selection | 9 | State the process for selecting studies (i.e. screening,eligibility, included in systematic review, and, if applicable,included in the meta-analysis). | 3 |
| Data collection process | 10 | Describe method of data extraction from reports (e.g. pilotedforms, independently, in duplicate) and any processes forobtaining and confirming data from investigators. | 4 |
| Data items | 11 | List and define all variables for which data were sought (e.g.PICOS, funding sources) and any assumptions and simplificationsmade. | 3, 4 |
| Risk of bias in individual studies | 12 | Describe methods used for assessing risk of bias of individualstudies (including specification of whether this was done at thestudy or outcome level), and how this information is to be usedin any data synthesis. | 3, 4 |
| Summary measures | 13 | State the principal summary measures (e.g. risk ratio,difference in means). | N/A—Not a MA |
| Synthesis of results | 14 | Describe the methods of handling data and combining results ofstudies, if done, including measures of consistency (e.g.I2) for each meta-analysis. | N/A—Not a MA |
| Risk of bias across studies | 15 | Specify any assessment of risk of bias that may affect thecumulative evidence (e.g. publication bias, selective reportingwithin studies). | N/A—Not a MA |
| Additional analyses | 16 | Describe methods of additional analyses (e.g. sensitivity orsubgroup analyses, meta-regression), if done, indicating whichwere pre-specified. | N/A—Not a MA |
| RESULTS | |||
| Study selection | 17 | Give numbers of studies screened, assessed for eligibility, andincluded in the review, with reasons for exclusions at eachstage, ideally with a flow diagram. | Figure 1 |
| Study characteristics | 18 | For each study, present characteristics for which data wereextracted (e.g. study size, PICOS, follow-up period) and providethe citations. | 6–10 Table 3 Appendix 4 |
| Risk of bias within studies | 19 | Present data on risk of bias of each study and, if available,any outcome-level assessment (see Item 12). | Table 2 |
| Results of individual studies | 20 | For all outcomes considered (benefits or harms), present, foreach study: (a) simple summary data for each intervention groupand (b) effect estimates and confidence intervals, ideally witha forest plot. | N/A—Not a MA |
| Synthesis of results | 21 | Present results of each meta-analysis done, including confidenceintervals and measures of consistency. | N/A—Not a MA |
| Risk of bias across studies | 22 | Present results of any assessment of risk of bias across studies(see Item 15). | N/A—Not a MA |
| Additional analysis | 23 | Give results of additional analyses, if done (e.g. sensitivityor subgroup analyses, meta-regression (see Item 16)). | N/A—Not a MA |
| DISCUSSION | |||
| Summary of evidence | 24 | Summarize the main findings including the strength of evidencefor each main outcome; consider their relevance to key groups(e.g. health care providers, users, and policy makers). | 7–10 |
| Limitations | 25 | Discuss limitations at study and outcome level (e.g. risk ofbias), and at review level (e.g. incomplete retrieval ofidentified research, reporting bias). | 9–10 |
| Conclusions | 26 | Provide a general interpretation of the results in the contextof other evidence, and implications for future research. | 9–10 |
| FUNDING | |||
| Funding | 27 | Describe sources of funding for the systematic review and othersupport (e.g. supply of data); role of funders for thesystematic review. | 10 |
Appendix 2.
PubMed search.
| Search number | Terms | Number of articles located |
|---|---|---|
| 1 | (((((Autism Spectrum Disorder[MeSH Major Topic]) OR AutisticDisorder[MeSH Major Topic])) OR asperger syndrome[MeSH Terms]))NOT ((((autistic disorder/diagnosis[MeSH Terms]) OR autismspectrum disorder/diagnosis[MeSH Terms])) OR AspergerSyndrome/diagnosis[MeSH Terms]) | 14,089 |
| 2 | (((((((((((((((((((Health[MeSH Terms]) OR Health InformationExchange[MeSH Terms]) OR Health Services for Persons withDisabilities[MeSH Terms]) OR quality of life) OR quality oflife[MeSH Terms]) OR mental health[MeSH Terms]) OR depression)OR depression[MeSH Terms]) OR depressive disorder[MeSH Terms])OR (health care quality, access, and evaluation[MeSH Terms])) ORhealthcare disparities[MeSH Terms]) OR health services[MeSHTerms]) OR access to healthcare) OR health servicesaccessibility[MeSH Terms]) OR Quality Indicators, HealthCare[MeSH Terms]) OR (health services needs and demand[MeSHTerms])) OR anxiety) OR anxiety disorders[MeSH Terms]) ORphobia, social[MeSH Terms]) OR cost of illness[MeSH Terms] | 7,721,874 |
| 3 | 2 NOT: ((((((((((((caregivers[MeSH Terms]) ORmothers/psychology[MeSH Terms]) OR adolescent[MeSH Terms]) ORinfant[MeSH Terms]) OR child[MeSH Terms]) OR pregnancy[MeSHTerms]) OR parents[MeSH Terms]) OR child of impairedparents[MeSH Terms]) OR pediatrics))) OR children | 4,255,981 |
| 4 | 1 AND 3 | 1052 |
| 5 | Limits applied to 4: within 10 years, English language,Humans | 597 |
Appendix 3.
PubMed search of specific intervention terms when combined with populationterms.
| Intervention Terms combined with (“autisticdisorder”[MeSH Terms] OR (“autistic”[All Fields] AND“disorder”[All Fields]) OR “autistic disorder”[All Fields] OR“autism”[All Fields]) | Number of articles located |
|---|---|
| (“mindfulness”[MeSH Terms] OR “mindfulness”[All Fields]) | 4 |
| “cognitive behaviour therapy”[All Fields] OR “cognitivetherapy”[MeSH Terms] OR (“cognitive”[All Fields] AND“therapy”[All Fields]) OR “cognitive therapy”[All Fields] OR(“cognitive”[All Fields] AND “behavior”[All Fields] AND“therapy”[All Fields]) OR “cognitive behavior therapy”[AllFields] | 163 |
| (trauma-informed[All Fields] AND (“therapy”[Subheading] OR“therapy”[All Fields] OR “therapeutics”[MeSH Terms] OR“therapeutics”[All Fields])) | 0 |
| animal-assisted[All Fields] | 5 |
| ((“cannabis”[MeSH Terms] OR “cannabis”[All Fields] OR“marijuana”[All Fields]) | 9 |
Appendix 4.
Participant characteristics from included studies.
| Author | Study design | Total sample | Diagnosis included (confirming assessment) | Mean age (years) | Gender (% male) | Intellectual disability (%) |
|---|---|---|---|---|---|---|
| Brundage et al. (2013) | Single-subject ABAB design | 1 | Autistic disorder (ADOS) | 21 | 100 | 100 |
| Campillo et al. (2014) | Single-subject AB design | 3 | Autistic disorder (DSM IV criteria) | 25 | 66 | 100 |
| Ekman & Hiltunen (2015) | Pre-test–post-test single group | 18 (11 adults) | ASD diagnosis (verified with psychiatric provider) | 29.8 (adult sample) | 65 (adult sample) | Not reported |
| Enticott et al. (2011) | Case report | 1 | High-functioning ASD (not confirmed) | 20 | 0 | 0 |
| Gal et al. (2015) | Pre-test–post-test single group | 25 | 36% PDD-NOS, 8% ASD, 14% Asperger’s syndrome (psychiatricrecords) | 19 | 96 | Not reported |
| Hesselmark et al. (2014) | Randomized controlled trial | 75 | Autism spectrum disorder (medical records, ADOS, and clinicalinterview) | 32 | 55 | 0 |
| Hsieh et al. (2014) | Case report | 1 | Autism spectrum disorder (unclear diagnostic verification) | 22 | 100 | 100 |
| McGillivray & Evert (2014) | Pre-test–post-test non-equivalent control group | 42 | Asperger syndrome or high-functioning autism (face-to-faceinterview after chart review) | 21 | 76 | Unclear. Excluded participants with “obvious signs of cognitiveimpairment that might limit their ability to fully participate”(p. 2042) |
| McVey et al. (2016) | Randomized controlled trial | 53 | High-functioning autism, autism syndrome, or pervasivedevelopmental disorder—NOS (ADOS-G) | 20 | 81 | Unclear. Inclusion was verbal IQ 70. Mean IQ was 92 |
| Nilsson & Ekselius (2009) | Case study | 1 | Asperger’s syndrome, obsessive-compulsive disorder,hypochondriasis (unclear diagnostic verification) | 38 | 100 | Not reported |
| Roser et al. (2009) | Case study | 1 | Asperger’s syndrome (Marburg Rating Scale) | 25 | 100 | 0 |
| Russell et al. (2013) | Randomized controlled trial | 46 | Autism spectrum disorder with co-occurring OCD (AutismDiagnostic Interview) | 27 | 76 | Unclear. Inclusion was verbal IQ 70. Mean Verbal IQ 100 |
| Siew et al. (2017) | Mixed methods with pre-test–post-test single group | 10 | Autism spectrum disorder (self-identified) | 18 | 70 | Unclear |
| Sajith et al. (2017) | Case study | 2 | Autism spectrum disorder (unclear diagnostic verification) | 22 | 100 | 100 |
| Sizoo & Kuiper (2017) | Pre-test–post-test non-equivalent control group | 59 | Autism spectrum disorder (chart review) | 37 | 64 | 0 |
| Spek et al. (2013) | Randomized controlled trial | 42 | Autism spectrum disorder (ADI-R, DSM-IV-TR) | 42 | 66 | 0 |
| Tiger et al. (2009) | Case study | 1 | Asperger’s syndrome (unclear diagnostic verification) | 19 y | 100 | 0 |
| Wachtel et al. (2010) | Case study | 1 | Autism, intellectual disability, severe depression with suicidalattempts, catatonia (unclear diagnostic verification) | 19 | 100 | 100 |
| Weiss & Lunsky (2010) | Case series | 3 | Asperger’s syndrome (chart review of previous diagnosis withconfirmation from Adult Asperger Assessment) | 40 (estimate based on range) | 66 | 0 |
ADI-R: Autism Diagnostic Interview–Revised; ADOS: Autism DiagnosticObservation Schedule; ASD: autism spectrum disorder; DSM: Diagnostic andStatistical Manual of Mental Disorders (4th ed; American PsychiatricAssociation, 2003); IQ: intelligence quotient; OCD: obsessive-compulsivedisorder; PDD-NOS: Pervasive Developmental Disorder—Not OtherwiseSpecified.
Footnotes
Author contributions: All authors have reviewed and approved the manuscript prior to submission, andthis manuscript has not been submitted to any other journal for publication. Themanuscript was provided to the funder as a draft and is not available publicly.T.W.B. conceptualized the need for study, contributed to data analysis, datainterpretation, and drafting the manuscript for submission. S.M.S. alsoconceptualized the need for study. He edited and contributed to significantrevisions of the manuscript as submitted. M-L.A., R.C., B.C., D.L.G., L.M.,Y.(Jeanette).P., B.R., and K.W. fully read the manuscript, provided significantedits, and provided new content based in their experience as autisticindividuals. These authors assisted in the design of autistic friendly languageand interpretation of the results. J.M.E., M.C.K., T.M.H., L.E.M., S.M.R. andS.P.W. contributed to data acquisition, data analysis, data interpretation,drafting the manuscript for submission, and critically revised the content ofthe draft.
Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to theresearch, authorship, and/or publication of this article.
Funding: The author(s) disclosed receipt of the following financial support for theresearch, authorship, and/or publication of this article: This study was fundedthrough a Patient-Centered Outcomes Research Institute (PCORI) Eugene WashingtonPCORI Engagement Award (EAIN# 4208). The views presented in this document aresolely the responsibility of the authors and do not necessarily represent theviews of the Patient-Centered Outcomes Research Institute (PCORI), its Board ofGovernors, or Methodology Committee.
Ethical approval: This research did not involve human subjects, as it included an analysis ofpublished research. No institutional review board review was conducted.
ORCID iD: Teal W Benevides
https://orcid.org/0000-0003-1395-2628
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