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Perspectives from the Autism Community on the Potential Utility of a Novel Measure of Suicide Risk and Mental Health Symptoms for Autistic Youth: A Pilot Study

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Title: Perspectives from the Autism Community on the Potential Utility of a Novel Measure of Suicide Risk and Mental Health Symptoms for Autistic Youth: A Pilot Study
Language: English
Authors: Paige E. Cervantes (ORCID 0000-0002-8615-0063), Robert D. Gibbons, Lawrence A. Palinkas, Greta R. Conlon, Sarah M. Horwitz
Source: Journal of Developmental and Physical Disabilities. 2025 37(4):601-612.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 12
Publication Date: 2025
Sponsoring Agency: National Institute of Mental Health (NIMH) (DHHS/NIH)
Contract Number: P50MH113662
Document Type: Journal Articles
Reports - Research
Descriptors: Autism Spectrum Disorders, Suicide, Risk, Computer Assisted Testing, Screening Tests, Pilot Projects, Rating Scales, Mental Disorders, Symptoms (Individual Disorders), Feedback (Response), Test Use, Youth
DOI: 10.1007/s10882-024-09963-7
ISSN: 1056-263X
1573-3580
Abstract: Because autistic youth experience increased suicide risk and there are no suicide risk screening tools for this population, existing measures need to be evaluated and then modified with input from the autism community. This pilot study obtained feedback from autistic youth, caregivers, and autism specialist clinicians (N = 14) on the applicability of a novel measure of suicide and mental health symptoms, the "Kiddie-Computerized Adaptive Test" (K-CAT) scales, for use with autistic youth. While impressions were largely positive and several features support its use, participants identified several concerns that warrant attention. Concerns aligned with those identified in previous research on other measures developed for the non-autistic population, with the most endorsed problem being language/terminology issues. Additional areas of assessment (e.g., perseveration, emotion dysregulation) were recommended to better capture the experience of suicidality in autistic youth. Results continue to underscore that measures developed for the general population cannot be applied to autistic individuals without thorough evaluation and potential modification. The feedback from community members in this study will be used in a future modification of the K-CAT for use with autistic youth.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1479105
Database: ERIC
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  Value: <anid>AN0187120393;jdp01aug.25;2025Aug06.05:44;v2.2.500</anid> <title id="AN0187120393-1">Perspectives from the Autism Community on the Potential Utility of a Novel Measure of Suicide Risk and Mental Health Symptoms for Autistic Youth: A Pilot Study </title> <p>Because autistic youth experience increased suicide risk and there are no suicide risk screening tools for this population, existing measures need to be evaluated and then modified with input from the autism community. This pilot study obtained feedback from autistic youth, caregivers, and autism specialist clinicians (N = 14) on the applicability of a novel measure of suicide and mental health symptoms, the Kiddie-Computerized Adaptive Test (K-CAT) scales, for use with autistic youth. While impressions were largely positive and several features support its use, participants identified several concerns that warrant attention. Concerns aligned with those identified in previous research on other measures developed for the non-autistic population, with the most endorsed problem being language/terminology issues. Additional areas of assessment (e.g., perseveration, emotion dysregulation) were recommended to better capture the experience of suicidality in autistic youth. Results continue to underscore that measures developed for the general population cannot be applied to autistic individuals without thorough evaluation and potential modification. The feedback from community members in this study will be used in a future modification of the K-CAT for use with autistic youth.</p> <p>Keywords: Autism; Youth suicide; Suicide screening; Mental health assessment; K-CAT; Medical and Health Sciences Public Health and Health Services</p> <p>Copyright comment Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.</p> <p>Autistic children and adolescents experience suicidal thoughts and behaviors at high rates (O'Halloran et al., [<reflink idref="bib12" id="ref1">12</reflink>]). However, there are no validated suicide risk assessment tools for autistic youth (Howe et al., [<reflink idref="bib8" id="ref2">8</reflink>]). This is problematic because it is well recognized that, due to differences in interpretation and experience, measures used in the general population are often not valid for use with autistic individuals and may lead to inaccurate results (Howe et al., [<reflink idref="bib8" id="ref3">8</reflink>]; Nicolaidis et al., [<reflink idref="bib11" id="ref4">11</reflink>]). Common concerns autistic individuals report about general assessment tools include issues with language (e.g., confusing terminology, use of figures of speech), imprecise response options (e.g., vague Likert scales), anxiety when the response might not be completely accurate or when responses may be different when considering different situations, and failure of the assessment tool to fully capture the construct of interest in the context of autism (Nicolaidis et al., [<reflink idref="bib11" id="ref5">11</reflink>]). Therefore, an important first step in addressing these concerns is the evaluation and adaptation of existing suicide risk assessments for autistic youth. It is recommended that relevant community members be included in these evaluation efforts to provide interpretation and impressions of existing measures, evaluate content validity, and suggest potential modifications (Howe et al., [<reflink idref="bib8" id="ref6">8</reflink>]). The modified tool should then be administered to autistic youth to determine whether it performs with adequate reliability and validity. This approach was recently used in the development of a suicide risk measure for autistic adults (Cassidy et al., [<reflink idref="bib3" id="ref7">3</reflink>]). Similar work is urgently needed for youth.</p> <p>The <emph>K-CAT</emph><emph>-Suicide Scale</emph> (K-CAT-SS) shows promise in improving suicide risk detection in children and adolescents broadly. The K-CAT-SS is one of eight scales on the K-CAT (i.e., anxiety, depression, mania, attention-deficit/hyperactivity disorder, oppositional defiant disorder, conduct disorder, substance use disorder, suicide) which can be administered independently in less than 2 mins or together as a complete battery in less than 10 mins (Adaptive Testing Technologies, [<reflink idref="bib1" id="ref8">1</reflink>]). Developed based on multidimensional item response theory, the K-CAT tailors the items presented to an individual's symptom severity level, continuing to present items until an established level of measurement precision is achieved, optimizing both accuracy and efficiency. The K-CAT was validated against gold standard clinical interviews for youth aged 7–17 years old with strong psychometric properties. While it has not been validated for use with autistic youth, and these youth were excluded from its development sample (Gibbons et al., [<reflink idref="bib6" id="ref9">6</reflink>]), there are several K-CAT features that support its use for this population. First, the K-CAT is electronically administered, reducing the social communication demands of common interview-style suicide risk screening measures. Second, its efficiency may improve accessibility for autistic youth with attentional deficits. Finally, there is both a youth and caregiver version of the full K-CAT, and while only a youth version of the K-CAT-SS exists, integrating data from both informants across mental health domains likely improves suicide risk evaluation. This is important as multiple-informant assessment represents best practice, particularly in the autism field (Howe et al., [<reflink idref="bib8" id="ref10">8</reflink>]). Given the clinical potential of the K-CAT-SS for autistic youth, this pilot study elicited feedback from key members of autism community (i.e., autistic youth, their caregivers, autism specialist clinicians) about the K-CAT. The goals of the study were to both evaluate general impressions of the full K-CAT and identify specific concerns with the K-CAT-SS to begin to understand the utility of the measure for autistic youth.</p> <hd id="AN0187120393-2">Method</hd> <p></p> <hd id="AN0187120393-3">Participants</hd> <p>Five youth and six caregiver participants were purposively (Palinkas et al., [<reflink idref="bib13" id="ref11">13</reflink>]) recruited from local autism and mental health clinics and via relevant listservs and websites to participate in the pilot study. Caregivers had to be English-speaking and the parent/guardian of an individual on the autism spectrum with a history of suicidality in childhood or adolescence. Youth had to be aged 13–17, have fluent verbal language, be English-speaking, have a diagnosis of autism, and have a history of suicidality. If current suicidality was present, the youth must have been in treatment to participate. While the K-CAT was developed for use in children aged 7–17 years old, the age range for this study was restricted to autistic adolescents given the sensitivity of the topic and the social communication requirements for participation in the interview. Three autism specialist clinicians were recruited from an autism clinic at a major medical institution in the Northeastern US. Clinicians in this setting have extensive training and experience addressing co-occurring mental health concerns in autism. Clinicians must have had experience treating autistic youth with suicidality to participate.</p> <hd id="AN0187120393-4">Procedure</hd> <p>This study was conducted as part of an effort to develop emergency department (ED) clinician training in autism and suicide and to evaluate a screening program for autistic youth implemented within a larger initiative introducing the K-CAT to improve suicide risk screening in EDs for all youth aged 7–17 years old (Cervantes et al., [<reflink idref="bib4" id="ref12">4</reflink>]). After obtaining formal consent and assent, youth and caregiver participants were asked to complete the child or parent K-CAT and a web-based, investigator-developed K-CAT impressions questionnaire to elicit feedback about the K-CAT. They then engaged in a virtual interview lasting approximately 1 h with the first author, a clinical psychologist. The K-CAT impressions questionnaire first inquired about impressions of the full K-CAT (e.g., "How easy for you was the K-CAT to use and complete?"; "Were there any important topics or areas missing?"; "Are there changes we could make to the K-CAT to make it better for kids and teens on the autism spectrum?") and then asked youth and caregivers to rate how difficult they believed each item of the K-CAT-SS item bank would be for them or their child to answer (e.g., "If you were asked this question, how hard would it be to answer?" or "How hard do you think this item would be for your child to answer?"). Prior to assigning the online questionnaires to participants, the research team reviewed the instructions, answered questions, and provided our contact information in case anything remained unclear when they completed the measures. Autism specialist clinicians completed the K-CAT impressions questionnaire, which again presented each item of the K-CAT-SS item bank, asked whether the item could be problematic for autistic youth, and asked if any symptoms were not captured by the items that may be relevant to the experience of suicidality in this group. When an item was rated as potentially difficult, participants were asked to explain why within the online survey for caregivers and clinicians and, to reduce the burden of the questionnaires on youth, in the interview for youth. Of note, to accommodate the attentional and emotional needs of one youth participant, the research team reduced the interview length. The youth was given a choice on which interview sections they wanted to complete, and follow-up on the K-CAT was not conducted. For all participant groups, the interview largely focused on recommendations for modifying suicide-related care in the ED, presented previously (Cervantes et al., [<reflink idref="bib4" id="ref13">4</reflink>]), but also involved follow-up on their responses to the online questionnaires.</p> <hd id="AN0187120393-5">Analysis</hd> <p>These preliminary data were analyzed using an inductive thematic approach (Braun & Clarke, [<reflink idref="bib2" id="ref14">2</reflink>]). This involved becoming familiar with the qualitative data collected then generating and assigning codes, including identifying, defining, and applying broader categories to related codes. Data were coded by two authors (PC & GC), and agreement was 93.2%. All disagreements were resolved through discussions that resulted in consensus. Using a process of constant comparison, codes were grouped into larger categories or themes describing participant reasons why items may be difficult to respond to/problematic for autistic youth.</p> <hd id="AN0187120393-6">Results</hd> <p>Participant demographics are presented in Table 1. Caregiver and youth participants represented five dyads and one caregiver participating without their child. Caregivers included five mothers and one grandfather. One caregiver identified as autistic. All youth participating and described by caregivers had fluent verbal language, broadly average intelligence per caregiver report, and at least one co-occurring mental health diagnosis. Suicide symptoms experienced by youth varied and included suicidal ideation and statements, self-harm, and a history of suicide attempts. Autism specialist clinicians had between 9 and 15 years of experience serving autistic patients, and autistic patients made up most of their current caseloads (> 60%).</p> <p>Table 1 Participant demographics</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left" /><th align="left"><p>Youth</p><p>(<italic>N</italic> = 5)</p></th><th align="left"><p>Caregivers</p><p>(<italic>N</italic> = 6)</p></th><th align="left"><p>Autism Clinicians</p><p>(<italic>N</italic> = 3)</p></th></tr><tr><th align="left"><p>Age N(%)</p></th><th align="left" /><th align="left" /><th align="left" /></tr></thead><tbody><tr><td align="left"><p>13–17 years</p></td><td align="left"><p>5 (100)</p></td><td align="left"><p>-</p></td><td align="left"><p>-</p></td></tr><tr><td align="left"><p>31–40 years</p></td><td align="left"><p>-</p></td><td align="left"><p>1 (16.7)</p></td><td align="left"><p>3 (100)</p></td></tr><tr><td align="left"><p>41–50 years</p></td><td align="left"><p>-</p></td><td align="left"><p>2 (33.3)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left"><p>51–60 years</p></td><td align="left"><p>-</p></td><td align="left"><p>2 (33.3)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left"><p>60 + years</p></td><td align="left"><p>-</p></td><td align="left"><p>1 (16.7)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left" colspan="4"><p><bold>Gender</bold><bold><italic>N</italic></bold><bold>(%)</bold></p></td></tr><tr><td align="left"><p>Female</p></td><td align="left"><p>3 (60.0)</p></td><td align="left"><p>5 (83.3)</p></td><td align="left"><p>3 (100)</p></td></tr><tr><td align="left"><p>Male</p></td><td align="left"><p>2 (40.0)</p></td><td align="left"><p>1 (16.7)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left" colspan="4"><p><bold>Race/Ethnicity</bold><bold><italic>N</italic></bold><bold>(%)</bold></p></td></tr><tr><td align="left"><p>Non-Hispanic Black</p></td><td align="left"><p>0 (0.0)</p></td><td align="left"><p>0 (0.0)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left"><p>Non-Hispanic White</p></td><td align="left"><p>2 (40.0)</p></td><td align="left"><p>2 (33.3)</p></td><td align="left"><p>3 (100)</p></td></tr><tr><td align="left"><p>Non-Hispanic Asian</p></td><td align="left"><p>0 (0.0)</p></td><td align="left"><p>1 (16.7)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left"><p>Hispanic</p></td><td align="left"><p>2 (40.0)</p></td><td align="left"><p>2 (33.3)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left"><p>Other/Not Reported</p></td><td align="left"><p>1 (20.0)</p></td><td align="left"><p>1 (16.7)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left" colspan="4"><p><bold>Education</bold><bold><italic>N</italic></bold><bold>(%)</bold></p></td></tr><tr><td align="left"><p>Associate's Degree/Some college</p></td><td align="left"><p>-</p></td><td align="left"><p>2 (33.3)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left"><p>Bachelor's</p></td><td align="left"><p>-</p></td><td align="left"><p>1 (16.7)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left"><p>Master's</p></td><td align="left"><p>-</p></td><td align="left"><p>2 (33.3)</p></td><td align="left"><p>0 (0.0)</p></td></tr><tr><td align="left"><p>Doctoral</p></td><td align="left"><p>-</p></td><td align="left"><p>1 (16.7)</p></td><td align="left"><p>3 (100)</p></td></tr></tbody></table> </ephtml> </p> <p>Analysis of the responses to the online questionnaire and the semi-structured interviews revealed two primary topics related to the use of the K-CAT: youth and caregiver impressions of the K-CAT and evaluation of the K-CAT-SS. Within each topic, two themes were identified: (<reflink idref="bib1" id="ref15">1</reflink>) concerns and potential challenges using the measure with autistic youth, and (<reflink idref="bib2" id="ref16">2</reflink>) recommendations for scale revision and adaptation. Each of these themes are presented below.</p> <hd id="AN0187120393-7">Youth and Caregiver Impressions of the K-CAT</hd> <p>Three youth indicated that completing the full K-CAT was neither easy nor hard and two rated it as somewhat or very easy. Five caregivers rated the K-CAT as somewhat or very easy, whereas one caregiver who identified as autistic rated it as neither easy nor hard. All youth and caregivers endorsed that the K-CAT inquired about relevant symptoms either some (45.5%) or most (54.5%) of the time, and most did not believe there were important topics missing.</p> <hd id="AN0187120393-8">Concerns and Potential Challenges Using the K-CAT</hd> <p>Related to using the K-CAT to assess mental health symptoms in autistic youth, three caregivers and one youth reported concerns about terminology, including confusing phrasing, use of figures of speech, lack of specificity, and failure to account for the importance of context (i.e., different responses for different situations or triggers). One youth commented on anxiety resulting from not being confident in their interpretation of items and thus, questioned the accuracy of their responses. Two caregivers noted potential issues with the specificity of the response options in the Likert scale (e.g., Not at all; Just a little; Somewhat; Quite a bit; and, Very much). One caregiver was concerned about the validity of caregiver assessment when autistic youth often internalize their symptoms making it difficult to know what they are feeling. One caregiver noted that the length of the full K-CAT may be difficult for their child but believed its electronic administration may increase engagement and limit that potential barrier. There were also several more general comments. One caregiver reported that some items seemed more relevant to younger children than adolescents. One caregiver also commented on the level of trust between the child and treating clinician likely needed for youth to endorse some of the items. Two youth reported that they might not be comfortable answering some items, particularly if their caregiver was present. One youth reported that some of the items seemed redundant.</p> <hd id="AN0187120393-9">Recommendations for Revision and Adaptation</hd> <p>One caregiver reported that the caregiver version should inquire about youth thoughts of suicide and self-harm and that the area of perseveration needs to be addressed when assessing the mental health of autistic youth. One caregiver also noted that the tool may benefit from more positively framed items (e.g., asking about happiness rather than depression).</p> <hd id="AN0187120393-10">Evaluation of the K-CAT-SS</hd> <p>Autism specialist clinicians reported that the scale was comprehensive and provides a good foundation for further evaluation.</p> <hd id="AN0187120393-11">Concerns and Potential Challenges Using the K-CAT</hd> <p>Across youth, caregivers, and autism specialist clinicians, 22 of the 64 items in the K-CAT-SS item bank were identified as potentially problematic in the assessment of autistic youth by at least 25% of the sample (<emph>n</emph> = 3 + participants). There were five items that were identified as difficult by more than half the sample, suggesting that those items are most in need of modification (Table 2). When an item was identified as potentially problematic, participants most often cited language issues in their rationale (66.7% of responses), including use of figurative or abstract language, lack of specificity or clarity, and difficult vocabulary. This was true across groups, with language concerns making up 85.7% of youth responses, 70.7% of autism specialist clinician responses, and 56.8% of caregiver responses. Concern regarding diagnostic overlap (i.e., K-CAT-SS item inquiring about symptoms or behaviors that may be associated with autism rather than suicide risk) was endorsed in 19.2% of responses. Autism specialist clinicians were most concerned about diagnostic overlap interfering with the performance of an item, providing 63.2% of responses in this category. Worry about youth emotional reaction (e.g., distress, shame, increased perseveration) when responding to K-CAT-SS items was reported in 10.1% of responses, and issues regarding item relevance was reported in 4.0% of responses. Concerns regarding relevance and emotional reaction were most endorsed by caregivers, who provided 100% and 80.0% of the responses in these categories respectively.</p> <p>Table 2 K-CAT-SS items endorsed as problematic by over 50% of the sample</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>Item</p></th><th align="left"><p>Concerns</p></th></tr></thead><tbody><tr><td align="left"><p><bold>I was blue.</bold></p></td><td align="left"><p><bold>Language</bold>: use of figurative/abstract language</p><p>- Caregivers (<italic>N</italic> = 4)</p><p>o Example excerpt: <italic>"She may take this literally and think it means blue like the members of Blue Man Group."</italic></p><p>- Youth (<italic>N</italic> = 2)</p><p>o Example excerpt: <italic>"I don't know what that meant. I couldn't tell if it was talking about feelings or something, so I just put it as hard."</italic></p><p>- Clinicians (<italic>N</italic> = 3)</p><p>o Example excerpt: "<italic>The figurative language could be challenging for individuals with ASD."</italic></p></td></tr><tr><td align="left"><p><bold>I moved or spoke so slowly that other people said something.</bold></p></td><td align="left"><p><bold>Diagnostic overlap</bold>: speech and motor behaviors may vary secondary to autism or an associated condition (e.g., ADHD)</p><p>- Caregivers (<italic>N</italic> = 3)</p><p>o Example excerpt: "<italic>People might comment on this anyway sometimes since she has a speech delay and may occasionally struggle to explain or communicate something she perceive[s] as complex, making her appear to speak slowly.</italic>"</p><p>- Clinicians (<italic>N</italic> = 3)</p><p>o Example excerpt: "<italic>In addition to language difficulties co-occurring with ASD, there may be motor challenges as well.</italic>"</p><p><bold>Language</bold>: difficulties with item comprehension</p><p>- Youth (<italic>N</italic> = 2)</p><p>o Example excerpt: <italic>"[I] don't really understand; like, how could you talk very slow, or how could you move very slow?"</italic></p></td></tr><tr><td align="left"><p><bold>I felt listless compared to how I used to be.</bold></p></td><td align="left"><p><bold>Language</bold>: difficult vocabulary</p><p>- Caregivers (<italic>N</italic> = 4)</p><p>o Example excerpt: <italic>"My child may not understand listless."</italic></p><p>- Youth (<italic>N</italic> = 2)</p><p>o Example excerpt: <italic>"I don't think a lot of people know what listless means. That's the first time I'm hearing it."</italic></p><p>- Clinicians (<italic>N</italic> = 2)</p><p>o Example excerpt: "<italic>Understanding 'listless' might be hard for youth (this may not be specific to ASD)."</italic></p></td></tr><tr><td align="left"><p><bold>I felt down in the dumps.</bold></p></td><td align="left"><p><bold>Language</bold>: use of figurative/abstract language</p><p>- Caregivers (<italic>N</italic> = 2)</p><p>o Example excerpt: <italic>"'Down in the dumps' is a phrase that someone who interprets things literally may have difficulty understanding."</italic></p><p>- Youth (<italic>N</italic> = 1)</p><p>o Example excerpt: "<italic>I heard that saying once, but I didn't quite understand what it meant."</italic></p><p>- Clinicians (<italic>N</italic> = 3)</p><p>o Example excerpt: <italic>"'Down in the dumps' is figurative language that could be challenging for individuals on the spectrum."</italic></p><p><bold>No rationale provided</bold> (<italic>N</italic> = 1 youth)</p></td></tr><tr><td align="left"><p><bold>I felt I had let my family down.</bold></p></td><td align="left"><p><bold>Language</bold>: use of figurative/abstract language</p><p>- Caregivers (<italic>N</italic> = 2)</p><p>o Example excerpt: "'<italic>To let someone down' is a colloquial phrase that someone with ASD might not understand. Instead say 'disappoint' or 'upset' or 'make feel bad.'"</italic></p><p>- Clinicians (<italic>N</italic> = 2)</p><p>o Example excerpt: <italic>"'Letting someone down' may not be concrete enough for some people."</italic></p><p><bold>Relevance</bold>: Not relevant to presentation of suicide symptoms</p><p>- Caregiver (<italic>N</italic> = 1)</p><p>o Example excerpt: <italic>"His ideation is not related to family. It is tied to not having friends or being liked by peers. Family is his safe haven, and making us proud is not a goal for him."</italic></p><p><bold>Emotional reaction</bold>: Concern about how others would react to endorsing this item</p><p>- Youth (<italic>N</italic> = 1)</p><p>o Example excerpt: <italic>"In general, when I say stuff like that, I don't want people to say "No!" I'm not looking for charity; it just makes me feel bad. I would rather have people just hear me out. So that question of letting my family down is a hard topic because often it just causes more distress."</italic></p></td></tr></tbody></table> </ephtml> </p> <p>Regarding general impressions of the K-CAT-SS item bank, two clinicians had some concerns about the limited specificity of the Likert scale and one clinician about the direction to report on youth experience in the previous two weeks, as recalling and reporting on time may be difficult for some autistic youth. One clinician also reported that autistic youth may have difficulty reporting on internal states.</p> <hd id="AN0187120393-12">Recommendations for Revision and Adaptation</hd> <p>While no youth indicated any symptoms were missing from the item bank, clinicians and caregivers reported several topics that should be considered. Two clinicians suggested that inquiring about loss of interest in one's special interests may be useful. Other areas of assessment relevant to suicide risk included perseveration, endorsed by one caregiver, emotion dysregulation, endorsed by one clinician, and non-suicidal self-injury (NSSI), endorsed by one clinician. Four caregivers and one clinician reported on the importance of understanding situational triggers, including trauma, bullying and other interpersonal difficulties (e.g., lack of friends), unexpected changes in routine, experiences of exclusion, isolation, or discrimination secondary to an autism diagnosis, and other factors that may be contributing to symptoms (e.g., medication changes). One caregiver emphasized the importance of asking about protective factors, and one clinician highlighted the importance of evaluating suicidal intent.</p> <hd id="AN0187120393-13">Discussion</hd> <p>There is an urgent need to develop an assessment tool that accurately detects suicide risk and associated mental health concerns in autistic youth. Participants in this study endorsed generally positive impressions of the K-CAT overall. No one found the K-CAT challenging to complete, all found it largely comprehensive and relevant, and one commented on the advantage of electronic administration for increasing engagement. However, concerns were identified by all groups that warrant attention in the continued evaluation and potential modification of the K-CAT for autistic youth. Importantly, these concerns were not unique to the K-CAT, but rather, align with common problems identified when using measures developed for the general population for autistic individuals (Nicolaidis et al., [<reflink idref="bib11" id="ref17">11</reflink>]), suggesting available suicide risk measures, all of which were developed for non-autistic youth, likely have similar weaknesses.</p> <p>Language issues were most frequently identified in the evaluation of the K-CAT-SS item bank, including use of figurative, abstract, or non-specific language and difficult vocabulary. Not only could these issues increase confusion and anxiety when completing the measure, but they may lead to under-identification of youth in distress, precluding referrals to potentially life-saving services and supports. Because concern about diagnostic overlap was endorsed at the second highest rate, the predictive ability of K-CAT-SS items that may be related to both autism features and features of depression and suicide risk must be evaluated. This concern also highlights the importance of addressing the potential for diagnostic overshadowing by inquiring about both presence of symptoms and any changes from baseline in suicide risk evaluation (e.g., social withdrawal, sleep problems; Morgan & Maddox, [<reflink idref="bib9" id="ref18">9</reflink>]). It is interesting that concern about youth emotional reaction when responding to K-CAT-SS items was fairly specific to caregivers and may be related to findings from previous research demonstrating that caregivers of youth with neurodevelopmental disabilities (NDDs) are more likely than youth to decline routine suicide risk screening for their child (Rybczynski et al., [<reflink idref="bib14" id="ref19">14</reflink>]). While no evidence of iatrogenic risk has been found in the general population (Gould et al., [<reflink idref="bib7" id="ref20">7</reflink>]), this has not been replicated in autistic youth. Particularly in the context of the concern regarding increased perseveration following screening, which may be unique to autism, future research in this area is essential.</p> <p>Regarding additional areas to consider, participants reported that assessing loss of interest in one's special interests, increased perseveration, and self-harm, including NSSI, may be useful, which aligns with emerging work on suicide warning signs in autistic people (Morgan et al., [<reflink idref="bib10" id="ref21">10</reflink>]). The importance of assessing emotion dysregulation, which has been found to be associated with suicidality in autistic youth (Conner et al., [<reflink idref="bib5" id="ref22">5</reflink>]), was also highlighted. One caregiver recommended adding a scale specific to youth suicidality on the caregiver version of the K-CAT. The potential role of proxy suicide risk screening tools in the NDD population has been discussed in prior literature (Rybczynski et al., [<reflink idref="bib14" id="ref23">14</reflink>]) and should be investigated. Given that the K-CAT currently integrates ratings from both youth and caregivers across other mental health scales in its scoring, it is well positioned to develop and test the benefit of adding a caregiver-report suicide scale. Finally, other areas that are not traditionally included in screening measures but are important to follow up on in further suicide risk assessment were emphasized, including autism-specific factors (e.g., unexpected changes in routine) and factors associated with suicide risk in the general population which are often more prevalent in the autism population (e.g., trauma). It is important to note that a K-CAT post-traumatic stress disorder (PTSD) scale is being developed, which may prove beneficial in this evaluation pending validation for use with autistic youth.</p> <p>There are limitations to this study. As a pilot study, the sample was small. Formal evaluation of youth diagnoses was not conducted. Youth who participated and were described by caregivers had fluent verbal language, were reported to have average to above average IQ, and had a history of suicidality. Therefore, these findings may not be generalizable to all children and adolescents on the autism spectrum. This study also relied on online measures and questionnaires. While instructions were provided via virtual conferencing prior to administration and responses were discussed in the subsequent interview, it is still possible that participants misinterpreted some of the questions. Lastly, the youth participant who did not complete the K-CAT follow-up portion of the interview identified the most items as difficult on the K-CAT impressions questionnaire, and we could not obtain rationale for these endorsements.</p> <p>Despite these limitations, findings from the current study further underline that measures developed for the general population cannot simply be applied to autistic individuals without thorough evaluation and potential modification. While the K-CAT has many promising features for assessing autistic youth, its psychometric properties must be established in a sample of children and adolescents on the autism spectrum. Based on these preliminary data, however, modifications are likely necessary to optimize its performance with autistic youth. Given the increased risk for suicide in this population, it is critical that future research address the lack of valid suicide risk screening tools for assessing autistic youth.</p> <hd id="AN0187120393-14">Funding</hd> <p>This study was funded by the Organization for Autism Research (OAR) and the National Institute of Mental Health (P50MH113662). The authors thank OAR and the NIMH for their support but acknowledge that the findings and conclusions are those of the authors and do not necessarily reflect the opinions of OAR or the NIMH.</p> <hd id="AN0187120393-15">Declarations</hd> <p></p> <hd id="AN0187120393-16">Research Involving Human Participants</hd> <p>All procedures performed were in accordance with the ethical standards of the institutional review board and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This study was approved by the NYU Langone Health institutional review board.</p> <hd id="AN0187120393-17">Informed Consent</hd> <p>All caregiver and clinician participants provided consent, and youth participants provided assent.</p> <hd id="AN0187120393-18">Conflict of interest</hd> <p>Dr. Gibbons has served as an expert witness in cases related to suicide for the US Department of Justice, and Pfizer, Wyeth, and GSK pharmaceutical companies and founded the company Adaptive Testing Technologies that distributes computerized adaptive mental health tests. These activities have been reviewed and approved by the University of Chicago in accordance with its conflict-of-interest policies. Drs. Cervantes, Horwitz, and Palinkas and Ms. Conlon declare that they have no conflict of interest.</p> <hd id="AN0187120393-19">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0187120393-20"> <title> References </title> <blist> <bibl id="bib1" idref="ref8" type="bt">1</bibl> <bibtext> Adaptive Testing Technologies (n.d.). The K-CAT®—Validated Mental Health Measurement for Youth https://adaptivetestingtechnologies.com/k-cat/.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref14" type="bt">2</bibl> <bibtext> Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006; 3; 2: 77-101. 10.1191/1478088706qp063oa</bibtext> </blist> <blist> <bibl id="bib3" idref="ref7" type="bt">3</bibl> <bibtext> Cassidy SA, Bradley L, Cogger-Ward H, Rodgers J. Development and validation of the suicidal behaviours questionnaire—autism spectrum conditions in a community sample of autistic, possibly autistic and non-autistic adults. Molecular Autism. 2021; 12; 1: 46. 10.1186/s13229-021-00449-3</bibtext> </blist> <blist> <bibl id="bib4" idref="ref12" type="bt">4</bibl> <bibtext> Cervantes, P. E, Palinkas, L. A, Conlon, G. R, Richards-Rachlin, S, Sullivan, K. A, Baroni, A, & Horwitz, S. M. (in press). Improving emergency department care for suicidality in autism: Perspectives from autistic youth, caregivers, and clinicians. Journal of Autism and Developmental Disorders.</bibtext> </blist> <blist> <bibl id="bib5" idref="ref22" type="bt">5</bibl> <bibtext> Conner CM, Golt J, Righi G, Shaffer R, Siegel M, Mazefsky CA. A comparative study of suicidality and its association with emotion regulation impairment in large ASD and US census-matched samples. Journal of Autism and Developmental Disorders. 2020; 50; 10: 3545-3560. 10.1007/s10803-020-04370-1</bibtext> </blist> <blist> <bibl id="bib6" idref="ref9" type="bt">6</bibl> <bibtext> Gibbons RD, Kupfer DJ, Frank E, Lahey BB, George-Milford BA, Biernesser CL, Porta G, Moore TL, Kim JB, Brent DA. Computerized adaptive tests for rapid and accurate assessment of psychopathology dimensions in youth. Journal of the American Academy of Child & Adolescent Psychiatry. 2020; 59; 11: 1264-1273. 10.1016/j.jaac.2019.08.009</bibtext> </blist> <blist> <bibl id="bib7" idref="ref20" type="bt">7</bibl> <bibtext> Gould MS, Marrocco FA, Kleinman M, Thomas JG, Mostkoff K, Cote J, Davies M. Evaluating iatrogenic risk of youth suicide screening programs: A randomized controlled trial. Journal of the American Medical Association. 2005; 293; 13: 1635-1643. 10.1001/jama.293.13.1635</bibtext> </blist> <blist> <bibl id="bib8" idref="ref2" type="bt">8</bibl> <bibtext> Howe SJ, Hewitt K, Baraskewich J, Cassidy S, McMorris CA. Suicidality among children and youth with and without autism spectrum disorder: A systematic review of existing risk assessment tools. Journal of Autism and Developmental Disorders. 2020. 10.1007/s10803-020-04394-7</bibtext> </blist> <blist> <bibl id="bib9" idref="ref18" type="bt">9</bibl> <bibtext> Morgan, L, & Maddox, B. (2020). Autism resource for warning signs of suicide: Considerations for the Autism Community. American Association of Suicidology.</bibtext> </blist> <blist> <bibtext> Morgan, L, Maddox, B, Cassidy, S, Benevides, T, Donahue, M, & Pelton, M. (2021). Warning signs of suicide for autistic people: An autism-specific resource based on research findings and expert consensus. https://belong.coventry.domains/wp-content/uploads/2021/09/Warning-Signs-Resource-Sept-2021.pdf.</bibtext> </blist> <blist> <bibtext> 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. 10.1089/aut.2019.0074</bibtext> </blist> <blist> <bibtext> O'Halloran L, Coey P, Wilson C. Suicidality in autistic youth: A systematic review and meta-analysis. Clinical Psychology Review. 2022; 93: 102144. 10.1016/j.cpr.2022.102144</bibtext> </blist> <blist> <bibtext> Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood KE. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Administration and Policy in Mental Health and Mental Health Services Research. 2015; 42: 533-544. 10.1007/s10488-013-0528-y</bibtext> </blist> <blist> <bibtext> Rybczynski S, Ryan TC, Wilcox HC, Van Eck K, Cwik M, Vasa RA, Findling RL, Slifer K, Kleiner D, Lipkin PH. Suicide risk screening in pediatric outpatient neurodevelopmental disabilities clinics. Journal of Developmental and Behavioral Pediatrics: JDBP. 2022; 43; 4: 181-187. 10.1097/DBP.0000000000001026</bibtext> </blist> </ref> <aug> <p>By Paige E. Cervantes; Robert D. Gibbons; Lawrence A. Palinkas; Greta R. Conlon and Sarah M. Horwitz</p> <p>Reported by Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib12" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib11" firstref="ref4"></nolink> <nolink nlid="nl3" bibid="bib13" firstref="ref11"></nolink> <nolink nlid="nl4" bibid="bib14" firstref="ref19"></nolink> <nolink nlid="nl5" bibid="bib10" firstref="ref21"></nolink>
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  Data: <searchLink fieldCode="AR" term="%22Paige+E%2E+Cervantes%22">Paige E. Cervantes</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-8615-0063">0000-0002-8615-0063</externalLink>)<br /><searchLink fieldCode="AR" term="%22Robert+D%2E+Gibbons%22">Robert D. Gibbons</searchLink><br /><searchLink fieldCode="AR" term="%22Lawrence+A%2E+Palinkas%22">Lawrence A. Palinkas</searchLink><br /><searchLink fieldCode="AR" term="%22Greta+R%2E+Conlon%22">Greta R. Conlon</searchLink><br /><searchLink fieldCode="AR" term="%22Sarah+M%2E+Horwitz%22">Sarah M. Horwitz</searchLink>
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  Data: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
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  Data: Because autistic youth experience increased suicide risk and there are no suicide risk screening tools for this population, existing measures need to be evaluated and then modified with input from the autism community. This pilot study obtained feedback from autistic youth, caregivers, and autism specialist clinicians (N = 14) on the applicability of a novel measure of suicide and mental health symptoms, the "Kiddie-Computerized Adaptive Test" (K-CAT) scales, for use with autistic youth. While impressions were largely positive and several features support its use, participants identified several concerns that warrant attention. Concerns aligned with those identified in previous research on other measures developed for the non-autistic population, with the most endorsed problem being language/terminology issues. Additional areas of assessment (e.g., perseveration, emotion dysregulation) were recommended to better capture the experience of suicidality in autistic youth. Results continue to underscore that measures developed for the general population cannot be applied to autistic individuals without thorough evaluation and potential modification. The feedback from community members in this study will be used in a future modification of the K-CAT for use with autistic youth.
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