Autism in Adulthood - 2-1 - March 2020 : Advancing Measurement in Research and Practice for Autistic Adults

jeudi 19 mars 2020

1. McConachie H, Wilson C, Mason D, Garland D, Parr JR, Rattazzi A, Rodgers J, Skevington S, Uljarevic M, Magiati I. What Is Important in Measuring Quality of Life ? Reflections by Autistic Adults in Four Countries. Autism in Adulthood. 2019 ; 2(1) : 4-12.

Relevant and valid measurement is crucial in determining whether interventions and supports have improved the quality of life (QoL) of autistic people. However, it is possible that researchers’ and services’ use of general population QoL tools may overlook issues of specific importance. To advance methodology, we conducted a preliminary exploration of the need and basis for cross-cultural development of additional autism-specific QoL questions. Nine consultation groups with autistic adults (n ?= ?38) were held in Argentina, Australia, Singapore, and the United Kingdom to examine the items of the World Health Organization QoL questionnaire (WHOQOL-BREF) and the WHOQOL Disabilities add-on module. Each group discussion was transcribed and analyzed thematically to identify missing issues and nuances of particular significance to autistic people. Themes seen as important and particularly relevant to QoL of autistic people included a positive autistic identity, other people’s lack of understanding of autism, sensory issues, and autistic people’s contributions to society. There were notable similarities across sites indicating that creation of cross-cultural autism-specific items is likely to be possible ; the themes identified could inform the focus of items for measurement of QoL. This project represents an initial step toward fuller international consultation, and subsequent development of an autism-specific module for addition to the core WHOQOL model. Lay summary Why was this project done ? Quality of life (QoL) refers to how satisfied a person is with their life now, taking into account their experiences and the conditions in which they live. There are questionnaires for the general public to rate their QoL, but these may ask questions in ways that are not important or relevant for autistic people ; for example, some autistic people have few or no friends, but are fine with this. Also questionnaires miss out topics such as sensory overload that impact on QoL for autistic people. What was the purpose ? We wanted to try to understand whether the questions in the World Health Organization Questionnaire (WHOQOL-BREF for short), and in the optional add-on Disabilities questionnaire, were important and relevant to autistic people from different countries and cultures. We also wanted to find out whether autistic people thought there were other important topics missing from these questionnaires. What did the researchers do ? We held 9 consultation groups about the WHO questionnaire items, with 38 autistic people in 4 countries : the United Kingdom, Singapore, Australia, and Argentina. Researchers, including members of the autism community, read the typed out discussions a number of times to find common themes, especially what was particularly relevant, or topics and experiences that were missing. First we analyzed the four United Kingdom groups, and then the other five groups. What did the researchers find ? Autistic people we consulted thought that most of the existing items of the WHOQOL questionnaires were important. From the discussions, we found 13 themes that were identified as particularly relevant to QoL, including being positive about one’s autistic identity, other people’s (lack of) knowledge of autism, sensory issues, mental health difficulties, the nature of friendships, and supporting other people as carers or volunteers. What do these findings add to what was already known ? The discussions from the four countries were quite similar. The items from the WHO QoL questionnaires were mostly viewed as important and relevant by autistic people, but a number of issues are missing, which seem different in autism and should be included in any improved measurement of QoL. What are potential weaknesses ? The project was a first step in consultation about measuring autistic adults’ QoL, involving only four countries, and all except one group conducted in English. Only one group included people with intellectual disability. How will these findings help autistic adults now or in the future ? Having good QoL is central for everyone. Our consultation found that some topics highly relevant for autistic people are not included in QoL questionnaires developed for the general population. Our findings suggest that it will be both important and possible to develop a set of internationally appropriate items for autistic people to add to the existing WHO QoL questionnaires. This would allow researchers and health workers to measure accurately the QoL of autistic adults and to be able to judge how helpful supports and services are in improving QoL.

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2. McDonald TAM. Autism Identity and the “Lost Generation” : Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum. Autism in Adulthood. 2020 ; 2(1) : 13-23.

Background : A population segment of autistic adults are underidentified due, in part, to historic changes in criteria for diagnosing autism and diagnostic biases related to gender, socioeconomic status, and other individual characteristics such as intellectual functioning. Some of these individuals, described as the ?lost generation, ? may choose to self-diagnose. Although little is known about this population, it is possible that they share similar self-conceptualizations or internalized stigma as their diagnosed counterparts. This study reports on the structural validity of the Autism Spectrum Identity Scale (ASIS) with individuals diagnosed and self-diagnosed with autism and compares the demographic characteristics, stigma, self-concept, and quality of life of these two groups. Methods : Over 1000 adults diagnosed (n ?= ?893) or self-diagnosed (n ?= ?245) with autism were recruited through organizations serving the autism community to participate in a nationally distributed online survey that included demographic questions and measures for stigma, self-concept, quality of life, and well-being. The diagnosed data set was randomly split with exploratory factor analysis performed on a training data set. Split-half cross-validation was used to predict the factor structure of the holdout data set. Then, the full diagnosed data set structure was used to determine the generalizability of the factor structure to the self-diagnosed data set. The diagnosed and self-diagnosed were also compared for differences in gender, age, employment status, diagnostic term preference, and factors of self-concept (autism identity and self-esteem), stigma, and quality of life. Results : Factor analysis of diagnosed participants yielded a four-factor structure, consistent with previous research, with strong split-sample cross-validation and good internal consistency. Factor predictions of the self-diagnosed data set from the diagnosed data set ranged from 0.97 to 1.00 with similar internal consistency. Self-diagnosed participants were more likely to be older, women, or employed and less likely to be students or prefer the term ?autism ? than those with an autism diagnosis. The groups were remarkably similar in reported stigma, self-esteem, quality of life, and in ASIS factors ; both groups reported lower quality of life than the general population. Conclusions : The ASIS demonstrated the same internal structure with both the diagnosed and self-diagnosed samples. The profile of self-diagnosed participants matches the profile hypothesized for the ?lost generation ? and others at risk of being underidentified for autism. Both populations appear to be similarly struggling with employment, stigma, and quality of life. Future research should examine whether self-diagnosed individuals meet criteria for autism or could benefit from interventions, programs, or services serving autism communities.

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3. Rodgers J, Farquhar K, Mason D, Brice S, Wigham S, Ingham B, Freeston M, Parr JR. Development and Initial Evaluation of the Anxiety Scale for Autism-Adults. Autism in Adulthood. 2020 ; 2(1) : 24-33.

Background : Anxiety is highly prevalent in autistic adults and can cause a significant impact on functioning and quality of life. There are no existing measures of anxiety designed and validated specifically for autistic adults. In this study, we aimed to adapt an existing anxiety measure designed for autistic children, in collaboration with autistic adults and other professionals, to make it suitable for use for autistic adults and to examine the measurement properties of the newly designed measure. Methods : Through consultation with autistic adults and professionals working with autistic people, we developed a preliminary self-report anxiety measure. Five hundred fifty-one autistic adults completed the measure and another measure of anxiety and depression (the Hospital Anxiety and Depression Scale). Participants completed measures again after 1 month to determine test/retest reliability. We split the sample to enable exploratory and confirmatory factor analyses to be undertaken on different samples. We conducted internal consistency and convergent and divergent validity analyses. We completed receiver operator curve (ROC) analyses to investigate sensitivity and specificity and identify an indicative clinical cutoff. Results : Our findings indicate that the Anxiety Scale for Autism-Adults (ASA-A) has promising psychometric properties. Factor analysis indicated that a bifactor solution with orthogonal general and specific factors was an adequate fit and that minimal measurement bias would occur if the scale were treated as unidimensional, so the total score could be used as a valid measure of anxiety. We identified a General Anxiety factor and three group factors (Social Anxiety, Uncertainty, and Anxious Arousal). ROC analysis indicated a score of 28 could be considered an indicative clinical cutoff. Conclusion : The ASA-A is the first self-report anxiety questionnaire specifically developed and validated for autistic adults. Preliminary evaluation of the measurement properties indicates that the scale will be a useful tool in research and clinical contexts. Lay summary Why was this study done ? Autistic adults commonly experience anxiety, which can have a huge impact on their quality of life. One way of identifying anxiety is by using questionnaires. Research shows that anxiety may be experienced differently by autistic people, and so, questionnaires that have been created for neurotypical adults may not be suitable for autistic adults. At present, there are no anxiety measures that have been adapted specifically for autistic adults. What was the purpose of this study ? Our team previously created an anxiety questionnaire for autistic children ?the Anxiety Scale for Children-Autism Spectrum Disorder (ASC-ASD). We aimed to adapt this questionnaire to make it suitable for autistic adults. What did the researchers do ? We met with autistic people and professionals, and asked them how to change the ASC-ASD to make it suitable for measuring anxiety in autistic adults. We discussed whether the questions were appropriate for adults, if the questions were worded clearly, and if anything was missing. We then created the Anxiety Scale for Autism-Adults (ASA-A). What did we find ? Once the questionnaire was created, 551 autistic adults with anxiety completed it. We used this information to test whether the questionnaire was a good way of measuring anxiety. We also tested the questionnaire subscales, which were as follows : Anxious Arousal, Social Anxiety, and Uncertainty. We found that the questionnaire is useful in giving a total score for anxiety, and we found that a score of 28 indicated anxiety that was likely to have an impact on someone’s daily life. Each subscale was also found to be useful for providing a ?profile ? of anxiety. What do these findings add to what was already known ? These findings suggest that the ASA-A is a good way of measuring anxiety in autistic adults. This is the first anxiety measure to be developed for autistic adults. This study is the first step toward testing out the usefulness of the measure. We hop that our questionnaire can be further tested and that in the future it will help to identify anxiety experienced by autistic adults more accurately. This would mean that the results of future studies are more likely to be valid, which should help improve what we know about the anxiety autistic people experience. What are potential weaknesses in the study ? We used another anxiety measure to measure anxiety levels when testing what the cutoff score should be on our measure. A clinical interview may have been a more accurate way, and should be done in the future to check that the cutoff of 28 on the ASA-A is still appropriate for identifying anxiety in autistic adults. We recruited autistic adults from a database of people who are interested in taking part in research. This helped us to get enough people to test the questionnaire, but we cannot tell how well these results apply to all autistic people. Testing the questionnaire with other autistic people, including those who may need some assistance with reading or who may need someone else to complete it on their behalf will let us know. How will these findings help autistic adults now or in the future ? The final questionnaire, the ASA-A, has been shown to accurately measure anxiety in autistic adults who do not have an intellectual disability. The questionnaire will be helpful in both clinical and research services.

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4. Arnold SRC, Huang Y, Hwang YI, Richdale AL, Trollor JN, Lawson LP. “The Single Most Important Thing That Has Happened to Me in My Life” : Development of the Impact of Diagnosis Scale—Preliminary Revision. Autism in Adulthood. 2020 ; 2(1) : 34-41.

Background : Awareness and diagnosis of autism in adulthood is on the rise. Studies have considered the impact of receiving an autism diagnosis for parents of children on the spectrum, although only few primarily qualitative studies have considered the self-reported impact of autism diagnosis. The Impact of Diagnosis Scale (IODS) was initially developed with a focus on borderline personality disorder. Our aim was to develop a version suitable for autistic individuals. Methods : The research team and a group of autistic advisors revised the IODS items for suitability and accessibility to autistic participants. We gathered participant data for 92 autistic adolescents and adults from the Cooperative Research Centre for Living with Autism (Autism CRC) Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We used iterated principal factors analysis to explore potential factors, and thematic analysis to explore responses to two open-ended items. Results : Factor analysis suggested three factors of ?Service Access (SA), ? ?Being Understood (BU), ? and ?Self-Acceptance and Understanding (SU) ? for the 12 items of the IODS ?Preliminary Revision (IODS-PR). Cronbach’s alpha was good overall and acceptable for subdomains. Item mean scores suggest that although impact of autism diagnosis was generally perceived as positive for SU, scores were neutral in other domains. Qualitative analysis identified themes of Self-Understanding, Identity, and Acceptance, Supports and Services, Valence of Response, Relationships, and Camouflaging. Conclusions : The IODS-PR is the first scale to measure the self-reported experience of receiving an autism diagnosis. It showed good psychometrics and provides new insight into the experience of autism diagnosis. Qualitative analysis identified domains that remain unexplored and the potential for an expanded item set. A further revision of the tool will soon be available. It will provide critical information for clinicians and has potential applications for research and service evaluation. Lay summary Why was this study done ? There are increasing numbers of adults who are only diagnosed with autism in their teen and adult years. Research on this topic is limited, with most using surveys or interviews. What was the purpose of this study ? The purpose was to develop a revision of the Impact of Diagnosis Scale (IODS) to make it suitable to autistic teenagers and adults. What did the researchers do ? We worked with autistic research advisors to create the IODS ?Preliminary Revision (IODS-PR), which has 12 items scored on a 7-point agree/disagree scale and two open-ended questions. We then gathered data using the IODS-PR from the Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We ran a factor analysis on the scores and conducted a thematic analysis of the open-ended responses. One of the autistic advisors reviewed how we interpreted our results. What were the results of the study ? There were 92 autistic participants (46 males, 38 females, 8 nonbinary ; mean age of 36 years old). On average, participants were diagnosed with autism at age 30. The factor analysis suggested three domains in the IOD-PR : Self-Acceptance and Understanding, Being Understood, and Service Access. On average, participants’ scores suggested receiving an autism diagnosis was helpful for understanding and accepting themselves, but neutral for being understood by others or getting support from services. The thematic analysis identified several themes, the strongest theme was Self-Understanding, Identity, and Acceptance, where participants mostly commented on the positive new self-identity that came from their autism diagnosis. There was a Supports and Services theme that was divided into Enabled Support, Support not needed, and No or poor services. Most concerning was that many participants commented that the autism diagnosis did not enable any access to supports or that there were no appropriate support available. There was a Valence of Response theme that was divided into Relief, Positive impact, Wish diagnosed earlier, and Negative impact. There was a Relationships theme divided into Connected with autistic community, Improves relationships, and Others lack understanding. Finally, there was a Camouflaging theme. Based on these results, the researchers are working on further revisions to the IODS-PR to make it more useful and accessible. What do these findings add to what was already known ? The adapted IODS shows promise and findings will guide further development of the tool. These early-stage findings agree with what previous research said about the impact of receiving a diagnosis of autism in adulthood. What are potential weaknesses in the study ? There are strengths and weaknesses to using a questionnaire tool to research this topic. Interview research can get a more in-depth understanding of an individual’s response to the diagnosis. How will these findings help autistic adults now or in the future ? When the revised IODS is available, it could be used to evaluate support services and help clinicians understand how to help create a more positive response to diagnosis. Our findings confirm more needs to be performed about postdiagnosis supports.

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5. Wigham S, Ingham B, Le Couteur A, Berney T, Ensum I, Parr JR. Development and Initial Utility of the Autism Clinical Interview for Adults : A New Adult Autism Diagnostic Measure. Autism in Adulthood. 2020 ; 2(1) : 42-7.

Background : Clinicians use diagnostic interviews to help them gather and organize information collected in the assessment of autism. Most instruments are developed for children and few measures have been developed that are reliable, valid, and appropriate for use in adulthood. This is a significant barrier to providing a high-quality, timely service for adults. The aim of this development study was to assess the initial utility of the recently developed Autism Clinical Interview for Adults (ACIA) for use in autism diagnostic clinical services before further large-scale testing and evaluation. Methods : We invited adults who had received an autism spectrum diagnosis through a U.K. National Health Service (NHS) multidisciplinary adult autism assessment to participate. Seventeen autistic adults (8 women and 9 men, mean age of 37 years) and four relatives agreed to an interview. The semistructured ACIA interview comprises subject and informant versions, and a self-report preinterview questionnaire. In combination, the ACIA components cover topics relevant to autism and co-occurring condition assessment. We evaluated clinical utility and content validity via comparison with the Diagnostic and Statistical Manual Fifth Edition (DSM-5) and NHS diagnostic reports. Results : Each interview took between 60 and 90 minutes to complete. Comparison with DSM-5 and the NHS autism diagnostic report demonstrated that the ACIA accurately identified information on core autism characteristics needed for a diagnosis, and identified co-occurring conditions. In response to participant suggestions we revised the interview. Conclusions : These initial findings support the potential utility and validity of the ACIA for adult autism diagnostic clinical services. Further investigations of the acceptability, utility, and validity of this interview are planned. Lay summary Why was this study done ? Clinicians use diagnostic interviews during assessments to help gather and record information both from a person suspected to be on the autism spectrum and from an informant (someone who knows them well). However, most autism diagnostic interviews were originally developed for assessing autism in childhood, and few have been developed for use with adults. The lack of diagnostic interviews developed specifically for use with adults makes it difficult to provide a good-quality, consistent assessment. What was the purpose of this study ? The study tested a new semistructured diagnostic interview called the Autism Clinical Interview for Adults (ACIA). The ACIA includes a questionnaire for people to complete before their interview. This is followed by an interview that can be conducted with the person themselves and a separate version to be used with someone who knows them well (if permitted). The interview covers autism traits, strengths and difficulties, and co-occurring physical and mental health conditions. We wanted to find out if the interview is useful for autism diagnostic services by comparing information collected using the ACIA with clinical diagnostic reports. What did the researchers do ? We invited people who had received a diagnosis of autism from a U.K. National Health Service (NHS) assessment to take part in an interview. We asked them if we could also interview someone who knew them well, and if we could compare their NHS autism diagnostic report with information gathered using the ACIA. What were the results of the study ? Seventeen autistic adults (average age 37 years ; 8 women and 9 men) and 4 relatives/supporters (2 parents, a spouse, and a cohabiting partner) agreed to be interviewed. Each interview took 60 to 90 minutes to complete. A comparison with clinical reports showed the ACIA identified autism traits relevant for a diagnosis, as well as co-occurring conditions (e.g., depression). Participants suggested some ways to improve the interview, and revisions were made. What do these findings add to what is already known ? There are few diagnostic interviews designed specifically for use with adults seeking a diagnosis of autism. The findings from this study show that the ACIA is a promising new interview. What are the potential weaknesses of the study ? The study is small. However, it is important to run an initial test study before involving more people and resources in larger studies. Building on these results, we aim to undertake further studies on the acceptability and usefulness of the new interview with a larger number of people, including people from a range of backgrounds. How will these findings help autistic people now or in the future ? The ACIA has potential for use in adult autism clinical assessment services and as a resource for research and training. The semistructured format helps gather important and relevant information, and the interview length supports feasibility in clinical and research settings. The ACIA has the potential to streamline autism assessments and speed up the process for adults who currently wait a long time for their diagnosis.

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6. McDermott CR, Farmer C, Gotham KO, Bal VH. Measurement of Subcategories of Repetitive Behaviors in Autistic Adolescents and Adults. Autism in Adulthood. 2020 ; 2(1) : 48-60.

Background : Restricted and repetitive behaviors (RRBs) are core features of autism. Factor-analytic studies composed primarily of children have provided evidence for two domains of RRBs : Repetitive Sensory Motor (RSM) and Insistence on Sameness (IS) behaviors. The present study explores the validity of the Autism Diagnostic Interview-Revised (ADI-R) and the Repetitive Behavior Scale-Revised (RBS-R) for assessing these RRB subtypes in autistic adolescents and adults. Methods : The sample included 293 participants (Mage ?= ?19.89 years, SDage ?= ?4.88 years) whose RRBs were assessed via ADI-R, RBS-R Caregiver Report or RBS-R Self-Report. Confirmatory factor analysis (CFA) was conducted to assess the validity of the two-factor structure for each instrument. Cronbach’s alpha was computed to assess subscale reliability. Correlations were examined between instrument subscales and nonverbal intelligence quotient (NVIQ) and age. Results : Exploratory correlations were modest and provided weak evidence in favor of the utility of a CFA for the ADI-R. The RBS-R Caregiver and Self-Report CFA and internal consistencies supported the two-factor RSM and IS model tested. Consistent with previous literature, NVIQ was negatively correlated with the RBS-R Caregiver RSM subscale, but not meaningfully associated with IS. Neither RBS-R Self-Report subscale was meaningfully correlated with NVIQ. Across instruments, RSM subscales were correlated, but associations between IS were minimal. Conclusions : The present study provides initial support for the use of the RBS-R Caregiver and Self-Report to measure dimensions of RSM and IS behaviors in autistic adolescents and adults. The present data did not support the use of the ADI-R to assess these RRB subtypes in older individuals. Conclusions must be interpreted cautiously in light of the present study’s sample limitations. Additional research is needed to understand differences in caregiver-reported and self-reported RRBs. Further research on RRBs in autistic adolescents and adults, particularly in samples with more gender and racial/ethnic diversity, is critical to inform community understanding and knowledge of autism in adulthood. Lay summary Why was this study done ? Restricted and repetitive behaviors (RRBs) are features necessary for the diagnosis of autism spectrum disorder and are assessed at all ages. It cannot be assumed, however, that instruments designed for assessing children are appropriate for use with older individuals. Therefore, we explored whether the Autism Diagnostic Interview-Revised (ADI-R) and the Repetitive Behavior Scale-Revised (RBS-R) questionnaire, instruments used to evaluate RRBs in children, can be used to assess adolescents and adults. This information is important to inform clinicians and researchers about the best ways to assess RRBs in older individuals. What was the purpose of this study ? The purpose of this study was to determine if the ADI-R and RBS-R are appropriate to assess RRBs in autistic adults. Since RRBs are broad, we focused on how well these instruments measure two categories of RRBs : Repetitive Sensory Motor (RSM) and Insistence on Sameness (IS) behaviors. RSM includes behaviors such as hand flapping and lining up objects. IS includes behaviors such as negative responses to change and adherence to specific routines. Research supports the ADI-R and RBS-R for assessing these categories in children ; however, little is known about their use in older samples. This study aimed to address this research gap. What did the researchers do ? We used existing data from autistic adolescent and adults assessed using ADI-R, RBS-R Caregiver, or RBS-R Self-Report. We assessed the relationships between items on each instrument, whether items were meaningfully related to support categories of RSM and IS, and whether instrument subscales were related to age and nonverbal intelligence. What were the results of the study ? Results provided support for use of the RBS-R Caregiver and Self-Report, but not the ADI-R, for assessing RSM and IS behaviors in adults. Scores on the RB -R forms were not strongly related, suggesting that caregiver report and self-report may reflect different behaviors. This could be explained by caregivers not being aware of some behaviors their adult son or daughter exhibit. This would be consistent with previous research suggesting that autistic adults may hide or mask certain behaviors ; however, this was not tested in this study. What do these findings add to what was already known ? Findings demonstrate that the RBS-R Caregiver, commonly used to assess RRBs in children, can also be used to measure RSM and IS behaviors in autistic adolescents and adults. Results also provide initial evidence for the use of the RBS-R Self-Report to assess these behaviors in adults. What are potential weaknesses in the study ? The sample was small and did not include equal representation of females and nonbinary identities, non-White or non-Hispanic ethnicities, individuals with intellectual disability, or older adults. Also, participants did not have data from all three instruments. How will these findings help autistic adults now or in the future ? Findings inform clinicians and researchers about methods available to assess RRBs in adults. While further research is needed, especially in samples with more gender and racial/ethnic diversity, these results will contribute to more appropriate assessment of adults in clinical practice and research.

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7. Nicolaidis C, Raymaker DM, McDonald KE, Lund EM, Leotti S, Kapp SK, Katz M, Beers LM, Kripke C, Maslak J, Hunter M, Zhen KY. Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability : Lessons Learned and Recommendations. Autism in Adulthood. 2020 ; 2(1) : 61-76.

Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included : (1) the use of difficult vocabulary, confusing terms, or figures of speech ; (2) complex sentence structure, confusing grammar, or incomplete phrases ; (3) imprecise response options ; (4) variation in item response based on different contexts ; (5) anxiety related to not being able to answer with full accuracy ; (6) lack of items to fully capture the autism-specific aspects of a construct ; and (7) ableist language or concepts. Common adaptations included : (1) adding prefaces to increase precision or explain context ; (2) modifying items to simplify sentence structure ; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms ; (4) adding hotlinks that define problematic terms or offer examples or clarifications ; (5) adding graphics to increase clarity of response options ; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants. Lay summary Why is this topic important ? To understand what can improve the lives of autistic adults, researchers need to collect survey data directly from autistic adults. However, most survey instruments were made for the general population and may or may not work well for autistic adults. What is the purpose of this article ? To use lessons learned from our experience adapting surveys ?in partnership with autistic adults ?to create a set of recommendations for how researchers may adapt instruments to be accessible to autistic adults. What did the authors do ? Between 2006 and 2019, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) and the Partnering with People with Developmental Disabilities to Address Violence Consortium used a participatory research approach to adapt many survey instruments for use in six separate studies. We reviewed records from these partnerships and identified important lessons. What is this recommended adaptation process like ? The adaptation process includes the following : ?(1) ?Co-creating collaboration guidelines and providing community partners with necessary background about terminology and processes used in survey research ; ?(2) ?Collaboratively selecting which constructs to measure ; ?(3) ?Discussing each construct so that we can have a shared understanding of what it means ; ?(4) ?Identifying existing instruments for each construct ; ?(5) ?Selecting among available instruments (or deciding that none are acceptable and that we need to create a new measure) ; ?(6) ?Assessing the necessary adaptations for each instrument ; ?(7) ?Collaboratively modifying prefaces, items, or response options, as needed ; ?(8) ?Adding ?hotlink ? definitions where necessary to clarify or provide examples of terms and constructs ; ?(9) ?Creating new measures, when needed, in partnership with autistic adults ; (10)Considering the appropriateness of creating proxy report versions of each adapted measure ; and (11)Assessing the adapted instruments’ psychometric properties. What were common concerns about existing instruments ? Partners often said that, if taking a survey that used the original instruments, they would experience confusion, frustration, anxiety, or anger. They repeatedly stated that, faced with such measures, they would offer unreliable answers, leave items blank, or just st p participating in the study. Common concerns included the use of difficult vocabulary, confusing terms, complex sentence structure, convoluted phrasings, figures of speech, or imprecise language. Partners struggled with response options that used vague terms. They also felt anxious if their answer might not be completely accurate or if their responses could vary in different situations. Often the surveys did not completely capture the intended idea. Sometimes, instruments used offensive language or ideas. And in some cases, there just were not any instruments to measure what they thought was important. What were common adaptations ? Common adaptations included : (1) adding prefaces to increase precision or explain context ; (2) modifying items to simplify sentence structure ; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms ; (4) adding hotlinks that define problematic terms or offer examples or clarifications ; (5) adding graphics to increase clarity of response options ; and (6) adding new items related to autism-specific aspects of the construct. How will this article help autistic adults now or in the future ? We hope that this article encourages researchers to collaborate with autistic adults to create better survey instruments. That way, when researchers evaluate interventions and services, they can have the right tools to see if they are effective.

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8. Crompton CJ, Michael C, Fletcher-Watson S. Co-Creating the Autistic Satisfaction with Care Holistic Interview to Examine the Experiences of Older Autistic Adults in Residential Care. Autism in Adulthood. 2019 ; 2(1) : 77-86.

As in the general population, autistic adults may need residential care in their old age. Little is known about the needs of older autistic adults in residential care, and how to support them within these services. Care homes for older people play a central role in their social, physical, and psychological well-being, and it is important to identify and understand what factors can contribute to this for autistic adults, who may have specific and unidentified needs. A researcher and two experts via lived experience identified key topics for inclusion in the first round of an abbreviated Delphi study. Twenty-six experts in autism, aging, and residential care completed the two-round Delphi study, which involved identifying and prioritizing key areas of interest, and generating and providing feedback on interview content. This co-creation process gave rise to the Autistic Satisfaction with Care Holistic Interview (ASCHI), a four-part interview schedule designed to be used with autistic adults in residential care homes. The ASCHI covers topics identified as being important to autistic adults living in residential care, including social time with others, daily routine, activities, environment, independence, advocacy, physical health, and well-being. The ASCHI is an open access tool that can be used in future studies to explore the experiences of older autistic adults in residential care and help shape future research, practice, and policy. Lay summary Why was this study done ? As in the general population, autistic adults may need residential care in their old age. Little is known about the needs of older autistic adults in residential care, and how to support them within these services. Care homes for older people play a central role in their social, physical, and psychological well-being, and it is important to identify and understand what factors can contribute to this for autistic adults, who may have specific and unidentified needs. What was the purpose of this study ? To learn more about the experiences of older autistic adults who live in residential care, we co-created an interview schedule called the Autistic Satisfaction with Care Holistic Interview (ASCHI). What did the researchers do ? We worked with autistic people, their families and allies, researchers, service providers, and clinicians to co-create this interview. This involved finding out about what their priorities were in relation to residential care for older adults, then finding out which questions mattered to them most, and which questions were most accessible to be used in an interview with autistic adults. What were the results of the study ? The authors created the ASCHI tool, which can be used in future research to find out more about what residential care is like for older autistic adults, and which areas of services are not meeting their needs. This can, in turn, be used to inform policy and practice in residential care services, improving the quality of life of older autistic adults. What do these findings add to what was already known ? Currently, there are no research tools to find out what residential care is like for older autistic adults. We have worked with the autism community to create a new tool so that future researchers can learn more about older autistic adults’ experiences of residential care. What are potential weaknesses in the study ? Due to limited resources, we have not been able to pilot test the interview with older autistic adults in residential care yet ; however, we have published the interview under an open access license to allow researchers in the future to make the adaptations needed when using the interview. Also, the interview has been designed for autistic adults who use verbal language and are able to consent to taking part in research, and so its design limits participation to this subgroup of autistic people. How will these findings help autistic adults now or in the future ? This study provides a new tool to help researchers learn about what residential care is like for autistic people. This means that in the future, we will be able to understand what areas of support need more research and development to improve the care and lives of older autistic people.

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9. Riccio A, Delos Santos J, Kapp SK, Jordan A, DeNigris D, Gillespie-Lynch K. Developing the Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy Through a Research Partnership with Autistic Scholars. Autism in Adulthood. 2020 ; 2(1) : 87-100.

Autism research studies have traditionally failed to represent the full diversity of the autism spectrum due to the lack of measures available for use with participants who prefer to express themselves visually. A multidimensional measure of emotions, which can include both picture- and text-based prompts, may improve accessibility of emotion rating measures and broaden participation in research and educational evaluations to include those who communicate in diverse ways. Picture-based measures designed to assess participants’ emotions may be useful for research concerning autistic identity and service evaluation, two areas where representation of diverse perspectives is needed. Our participatory group of autistic and nonautistic researchers developed a Multidimensional Visual Scale Assessing Affect, Anxiety, Pride, and Energy (AAPE) by adapting and expanding upon an existing emotion rating scale. When testing the AAPE with autistic college students (n ?= ?72), their open-ended responses indicated that the AAPE’s dimensions of affect (97.2% correct), anxiety (79.2% correct), and energy (84.7% correct) were well comprehended without text-based labels with potential for improvement in how pride (52.8% correct) was represented. When provided with the labels that each dimension was intended to represent, participants generally agreed that each emotional dimension was well represented. When tested in an informal educational summer camp with autistic children and adolescents (n ?= ?50), the AAPE was well received and revealed insights about the students’ emotional responses to different instructional strategies that can guide curricular improvements. The AAPE has utility as a tool to help diverse autistic individuals self-advocate and improve research and services. Lay summary Why was this study done ? There are very few tools that autistic people can use to share how they feel. We wanted to develop a tool to help autistic people express their emotions using pictures. Pictures can help autistic people share how they feel. What was the purpose of this study ? We wanted to make an easy-to-understand tool that autistic people can use to share how they feel. What did the researchers do ? Our research group is participatory, meaning that autistic and nonautistic researchers worked together to make our tool. An autistic artist drew the tool. We called it the AAPE, which stands for the emotions it assesses : Affect, Anxiety, Pride, and Energy. We worked together to see how well the AAPE worked. We used a survey to see if autistic high school and college students understood our first try at the AAPE and we learned how to make the AAPE better from these students. We worked together to make the AAPE better. Then, we did another survey with autistic college students to see if our second try at the AAPE worked better. Then, we asked autistic kids and teenagers to use the AAPE to share how they felt about different ways of teaching. What were the results of the study ? In our final test, we asked 72 autistic college students to tell us what emotions they thought the AAPE was showing. College students thought that affect (97.2%), anxiety (79.2%), and energy (84.7%) showed the emotions we aimed to show with room for improvement in how pride (52.8%) was shown. After we told participants which emotion each scale was showing, they agreed that affect (average score 4.28 of 5) and anxiety (4.29 of 5) showed the emotions best, followed by energy (4.08 of 5) and pride (3.5 of 5) on a scale from 1 to 5 (strongly agree). Students preferred using the AAPE compared with text-based surveys we used in the past. Results showed that the AAPE does a good job at measuring emotions. Edits may still be needed to better show ?pride.? Work is needed with nonspeaking people to make sure our measure works well for people who communicate in different ways. What are potential weaknesses in the study ? The autistic adolescents and adults we have tested the AAPE with so far have not been very diverse. We did not include participants who communicate without speaking in the e first tests of the AAPE. We plan to use the AAPE with more diverse groups in future studies. How will these findings help autistic adults now or in the future ? In a future study, we will use the AAPE to rate pictures that show experiences of being autistic, like feeling outside a social group, having sensory difficulties, and making patterns. We would like to do this because some studies talk about negative experiences of autism, like feeling the need to hide autistic traits, but other studies describe strengths of autism, like strong memories and advanced knowledge in particular subjects. However, these studies do not talk about the emotions that come with these experiences and if these experiences are shared with autistic people who do not use speech to communicate. The AAPE is a tool that might help us understand how diverse autistic people feel about autism.

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