Commentary: Best practices and processes for assessment of autism spectrum disorder - the intended role of standardized diagnostic instruments.

Development of standardized diagnostic instruments has facilitated the systematic characterization of individuals with autism spectrum disorders (ASD) in clinical and research settings. However, overemphasis on scores from specific instruments has significantly detracted from the original purpose of these tools. Rather than provide a definitive "answer," or even a confirmation of diagnosis, standardized diagnostic instruments were designed to aid clinicians in the process of gathering information about social communication, play, and repetitive and sensory behaviors relevant to diagnosis and treatment planning. Importantly, many autism diagnostic instruments are not validated for certain patient populations, including those with severe vision, hearing, motor, and/or cognitive impairments, and they cannot be administered via a translator. In addition, certain circumstances, such as the need to wear personal protective equipment (PPE), or behavioral factors (e.g., selective mutism) may interfere with standardized administration or scoring procedures, rendering scores invalid. Thus, understanding the uses and limitations of specific tools within specific clinical or research populations, as well as similarities or differences between these populations and the instrument validation samples, is paramount. Accordingly, payers and other systems must not mandate the use of specific tools in cases when their use would be inappropriate. To ensure equitable access to appropriate assessment and treatment services, it is imperative that diagnosticians be trained in best practice methods for the assessment of autism, including if, how, and when to appropriately employ standardized diagnostic instruments.

Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020.

Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2020. Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates prevalence and characteristics of ASD and monitors timing of ASD identification among children aged 4 and 8 years. In 2020, a total of 11 sites (located in Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) conducted surveillance of ASD among children aged 4 and 8 years and suspected ASD among children aged 4 years. Surveillance included children who lived in the surveillance area at any time during 2020. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement in an evaluation, 2) a special education classification of autism (eligibility), or 3) an ASD International Classification of Diseases (ICD) code (revisions 9 or 10). Children aged 4 years were classified as having suspected ASD if they did not meet the case definition for ASD but had a documented qualified professional's statement indicating a suspicion of ASD. This report focuses on children aged 4 years in 2020 compared with children aged 8 years in 2020. Results: For 2020, ASD prevalence among children aged 4 years varied across sites, from 12.7 per 1,000 children in Utah to 46.4 in California. The overall prevalence was 21.5 and was higher among boys than girls at every site. Compared with non-Hispanic White children, ASD prevalence was 1.8 times as high among Hispanic, 1.6 times as high among non-Hispanic Black, 1.4 times as high among Asian or Pacific Islander, and 1.2 times as high among multiracial children. Among the 58.3% of children aged 4 years with ASD and information on intellectual ability, 48.5% had an IQ score of ≤70 on their most recent IQ test or an examiner's statement of intellectual disability. Among children with a documented developmental evaluation, 78.0% were evaluated by age 36 months. Children aged 4 years had a higher cumulative incidence of ASD diagnosis or eligibility by age 48 months compared with children aged 8 years at all sites; risk ratios ranged from 1.3 in New Jersey and Utah to 2.0 in Tennessee. In the 6 months before the March 2020 COVID-19 pandemic declaration by the World Health Organization, there were 1,593 more evaluations and 1.89 more ASD identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. After the COVID-19 pandemic declaration, this pattern reversed: in the 6 months after pandemic onset, there were 217 fewer evaluations and 0.26 fewer identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. Patterns of evaluation and identification varied among sites, but there was not recovery to pre-COVID-19 pandemic levels by the end of 2020 at most sites or overall. For 2020, prevalence of suspected ASD ranged from 0.5 (California) to 10.4 (Arkansas) per 1,000 children aged 4 years, with an increase from 2018 at five sites (Arizona, Arkansas, Maryland, New Jersey, and Utah). Demographic and cognitive characteristics of children aged 4 years with suspected ASD were similar to children aged 4 years with ASD. Interpretation: A wide range of prevalence of ASD by age 4 years was observed, suggesting differences in early ASD identification practices among communities. At all sites, cumulative incidence of ASD by age 48 months among children aged 4 years was higher compared with children aged 8 years in 2020, indicating improvements in early identification of ASD. Higher numbers of evaluations and rates of identification were evident among children aged 4 years until the COVID-19 pandemic onset in 2020. Sustained lower levels of ASD evaluations and identification seen at a majority of sites after the pandemic onset could indicate disruptions in typical practices in evaluations and identification for health service providers and schools through the end of 2020. Sites with more recovery could indicate successful strategies to mitigate service interruption, such as pivoting to telehealth approaches for evaluation. Public Health Action: From 2016 through February of 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing ASD evaluation and identification 4 years earlier (from 2012 until March 2016) among the cohort of children aged 8 years in 2020 . From 2016 to March 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing that among children aged 8 years in 2020 from 2012 until March 2016. The disruptions in evaluation that coincided with the start of the COVID-19 pandemic and the increase in prevalence of suspected ASD in 2020 could have led to delays in ASD identification and interventions. Communities could evaluate the impact of these disruptions as children in affected cohorts age and consider strategies to mitigate service disruptions caused by future public health emergencies.

Autistic women's diagnostic experiences: Interactions with identity and impacts on well-being.

OBJECTIVE: There has been suggestion that current diagnostic instruments are not sufficient for detecting and diagnosing autism in women, and research suggests that a lack of diagnosis could negatively impact autistic women's well-being and identity. This study aimed to explore the well-being and identity of autistic women at three points of their diagnostic journey: self-identifying or awaiting assessment, currently undergoing assessment or recently diagnosed, and more than a year post-diagnosis. METHODS: Mixed-methods were used to explore this with 96 women who identified as autistic and within one of these three groups. Participants completed an online questionnaire, and a sub-sample of 24 of these women participated in a semi-structured interview. RESULTS: Well-being was found to differ significantly across groups in three domains: satisfaction with health, psychological health, and environmental health. Validation was found to be a central issue for all autistic women, which impacted their diagnosis, identity, and well-being. The subthemes of don't forget I'm autistic; what now?; having to be the professional; and no one saw me were also identified. CONCLUSION: These results suggest that autistic women's well-being and identity differ in relation to their position on the diagnostic journey in a non-linear manner. We suggest that training on the presentation of autism in women for primary and secondary healthcare professionals, along with improved diagnostic and support pathways for autistic adult women could go some way to support well-being.

Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study.

OBJECTIVES: Implementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents'/caregivers' experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting. DESIGN: This qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, 'General Practice Surveillance for Autism', a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically. PARTICIPANTS: Twelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed. SETTINGS: All interviews were completed over the phone. RESULTS: There were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient-doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers. CONCLUSION: The findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting. TRIAL REGISTRATION NUMBER: ANZCTR (ACTRN12619001200178).

Utility of Diagnostic Classification for Children 0-5 to Assess Features of Autism: Comparing In-person and COVID-19 Telehealth Evaluations.

Logistic regression was used to examine the use of Autism Spectrum diagnostic categories from pre-COVID-19 in-person evaluations and COVID-19 telehealth evaluations at a specialist community mental health clinic. The diagnostic classification for children 0-5 (DC: 0-5) affords a wider range of diagnoses that allowed for inferences of clinician certainty of diagnosis. Use of full criteria diagnoses was significantly lower from telehealth evaluations during the pandemic, and was less certain for younger children, some non-English speakers, and children reporting Native American/Alaska Native race. Higher Child Behavior Checklist (CBCL) ASD subscale scores, lower CBCL total scores, and global developmental delay diagnoses predicted greater use of full ASD diagnoses. Findings suggest factors that could identify children appropriate for telehealth evaluations.

Online administration of the ADOS for research with adolescents and adults in response to the pandemic.

This study evaluates an online ADOS-2 Module 4 administration. Adolescents and adults with (n = 24; 7 females) and without (n = 13; 5 females) a history of autism spectrum disorder (ASD) completed the ADOS-2 Module 4 via videoconference. Parents or caregivers completed the Parent/Caregiver Form of the Vineland Adaptive Behavior Scales and the Achenbach Adult Behavior Checklist. The ADOS-2 was reviewed and scored by five trained clinicians and supervised by a senior clinician with established research reliability. The autistic group's scores differed on ADOS total (Calibrated Severity Score, WPS instrument) and domain scores, KSADS domain scores, and Achenbach T-scores. Inter-rater reliability was "moderate" (κ = 0.732), and percentage item-wise agreement was r = 0.69. The online ADOS-2 showed significant convergence with parent-reported assessments of ASD-relevant symptoms and characteristics, suggesting it was a valid assessment. While any online assessments must be used with caution, results suggest that the approach described here could have sufficient validity and reliability to fill the urgent need to assess and evaluate ASD symptomatology, as one component of a thorough clinical evaluation of ASD-related behaviors. LAY SUMMARY: In this exploratory study, we asked whether it was possible to give the ADOS-2 to adolescents and adults in a completely online way. Results showed that expert clinicians agreed on 69% of ADOS-2 items; also, participants with autism had higher scores on all parts of the ADOS-2. The online ADOS-2 scores had strong and significant relationships with parents' reports of friendship and social skills. While we need more research that tests this method, this way of doing the ADOS-2 online may be useful for clinicians and researchers who have an urgent need to evaluate autism during the pandemic.

Autistic adults have poorer quality healthcare and worse health based on self-report data.

BACKGROUND: Recent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality. METHODS: An anonymized, cross-sectional, self-report questionnaire was administered to n = 4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher's exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate. RESULTS: The final sample included n = 2649 participants (n = 1285 autistic) aged 16-96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods. LIMITATIONS: The study's sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality. CONCLUSIONS: Autistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic.

The Brief Observation of Symptoms of Autism (BOSA): Development of a New Adapted Assessment Measure for Remote Telehealth Administration Through COVID-19 and Beyond.

Interest in telehealth assessment for autism has increased due to COVID-19 and subsequent expansion of remote psychological services, though options that are easy for clinicians to adopt and available through the lifespan are limited. The Brief Observation of Symptoms of Autism (BOSA) provides a social context with standardized materials and activities that can be coded by clinicians trained in the Autism Diagnostic Observation Schedule. The current project examined psychometric properties to determine optimal use for each BOSA version. Three hundred and seven participants with 453 BOSAs were included to determine best performing items for algorithms, validity, sensitivity, specificity, recommended cut-offs, and proposed ranges of concern. While preliminary, the BOSA provides a promising new option for telehealth-administered assessment for autism.

Using real patients in e-learning: case-based online training in child and adolescent psychiatry.

Objectives: In undergraduate medical education and in the subject of child and adolescent psychiatry, examining young patients face-to-face is a key element of teaching. With the abrupt shutdown of face-to-face teaching caused by the SARS-CoV-2 pandemic, a case-based online training program integrating audio and video of real patients was developed. Methods: The blended learning platform CaseTrain guides medical students in their final year through real child-psychiatric patient cases, such as anorexia, autism, or attention deficit disorder, through presentation of video and audio of real patients and parents. The teaching format complements lectures on child psychiatric topics, comprising asynchronous elements (self-study using the digital material) as well as synchronous elements (web-conferences with a specialist). Learning objectives for students were set to develop knowledge of the spectra of psychiatric disorders that affect children and to recognize approaches how to assess and manage common psychiatric problems of childhood and adolescence. Results: The feedback from medical students through oral and written evaluation was positive. They appreciated getting to know 'real-world patients' in times of such a pandemic, to learn explorative techniques from role models, and to be in close contact with the supervising specialist. In consequence of critical feedback on the length of some video sequences, these training units will undergo revision. Conclusions: Case-based online training may continue to be a useful option in a post-pandemic future as integral part of medical education, complementing face-to-face lectures and training in (child) psychiatry.

Remote assessment in adults with Autism or ADHD: A service user satisfaction survey.

Advances in digital health have enabled clinicians to move away from a reliance on face to face consultation methods towards making use of modern video and web-based conferencing technology. In the context of the COVID-19 pandemic, remote telecommunication methods have become much more common place in mental health settings. The current study sought to investigate whether remote telecommunication methods are preferable to face to face consultations for adults referred to an Autism and ADHD Service during the COVID-19 pandemic. Also, whether there are any differences in preferred consultation methods between adults who were referred for an assessment of Autism as opposed to ADHD. 117 service users who undertook assessment by the ADHD and Autism Service at South West Yorkshire NHS Partnership Foundation Trust from April to September 2020 completed an adapted version of the Telehealth Usability Questionnaire (TUQ). Results demonstrated that service users found remote telecommunication to be useful, effective, reliable and satisfactory. Despite this, almost half of service users stated a general preference for face to face consultations. There was no difference in the choice of methods of contact between Autism and ADHD pathways. Remote telecommunication methods were found to be an acceptable medium of contact for adults who undertook an assessment of Autism and ADHD at an NHS Service during the COVID-19 pandemic.