Short report: Call to action for autism clinicians in response to anti-Black racism

Anti-Black racism is a pervasive issue in the autism field that affects the autism service pathway, which ranges from identification of concerns to ongoing service navigation. In this short report, we provide a working model of the autism service pathway and highlight ways in which anti-Black racism affects all components of the pathway. We summarize the literature that demonstrates the effects of racism within autism assessment, treatment, and quality of care. We end with six recommendations for systemic change that clinicians can take: (1) including and amplifying Black autistic voices within their organization, (2) continuously learning about and acknowledging the ways in which their discipline perpetuates anti-Black racism, (3) recognizing that cultural humility is a lifelong process, (4) being mindful of the complex pathway that families must navigate to receive autism services, particularly when working with Black individuals, and (5) advocating for system-level changes within their organization and refining changes that are made. Lay abstract Black autistic people experience anti-Black racism when interacting with service systems and the clinicians in those systems. In this article, we describe the various steps families take to get services and how anti-Black racism makes that process even harder. We discuss research that shows the negative effects of anti-Black racism in autism assessment, treatment, and quality of care. We then provide five recommendations that clinicians should follow to reduce anti-Black racism in the autism field: (1) find Black autistic people and listen to their opinions about your organization, (2) always keep learning about how your profession promotes anti-Black racism, (3) recognize that the process of a clinician learning to be culturally humble takes time and is never “complete,” (4) pay attention to all of the steps that families must take to receive autism services and how these steps are even harder for Black individuals, and (5) advocate for your organization to make systems-level changes in their policies and procedures.

Development of a Digitalized Bangla Autism Assessment System in Bangladesh (Preprint)

BACKGROUND The prevalence of Autism Spectrum Disorder is increasing due to various biopsychosocial and environmental factors that demands prompt and holistic initiatives for early diagnosis and appropriate interventions. However, most of the developing countries are in severe scarcity of culturally adapted and validated cost-effective tools and trained professionals. Bangladesh has established as one of the leading countries in autism care and awareness. However, the country also lacks valid, easily available and low-cost assessment tool that can be used from different part of the country OBJECTIVE This study aimed to develop a digitalized autism assessment system based on Bangla Autism Assessment Scale by translating, adapting and validating Indian Scale for Assessment of Autism in Bangladesh METHODS This multi staged mixed method study was conducted from 2018 to 2019. At first Bangla Autism Assessment Scale was developed from Indian Scale for Autism Assessment stepwise: forward translation, backward translation, expert committee review, pretesting. In the second stage a mobile application and website was developed following the user centered designing principles. In the third stage the usefulness of the mobile application and psychometric properties of the scale were assessed with 100 children from two special education schools in the Dhaka: Proyash Special School and Autism Welfare Foundation School. The diagnostic accuracy was measured against the diagnosis and severity assessment of a multi-disciplinary team using Diagnostic and Statistical Manual of Mental Disorder (DSM-5). Data was analyzed using SPSS-24. RESULTS More than 90% professionals considered the mobile application was helpful for them by reducing the total time for completing the assessment about 50% and also helped in error prevention such as missing any item or error in manual calculation of the test score. The tool revealed about 88% children were suffering from Autism among them 32% were suffering with Mild, 51% Moderate and 5% Severe level of Autism. We found the tool was 98% sensitive and 94% Specific in consideration of the Gold Standard of DSM-5 applied by expert professionals that was very satisfactory to use. CONCLUSIONS The Bangla autism assessment scale is a valid instrument for autism assessment and mobile application was useful. However, we recommend that the tool should be used by appropriate professionals after the first line screening to confirm the diagnosis and severity assessment.

Autism diagnosis as a social process

The diagnosis of autism can be challenging, particularly if an individual coming for assessment is considered to be near the diagnostic threshold. It is important to understand the experiences and challenges of diagnosis from the perspective of clinicians. In this study, 21 in-depth interviews were conducted with clinicians working in specialist autism assessment teams in adult and children’s services in England. Interviews were recorded and transcripts were analysed thematically. We identified four themes that represented how clinicians were frequently engaged with juggling their own professional understanding of what autism is with other factors such as the results of standardised tests and the views of patients and carers, in the context of limited resources: institutional pressure, making diagnosis make sense, seeing through an autism lens and just tools. The study illuminates the diagnostic process as a socially situated activity. We suggest that an examination of the benefits and drawbacks of assessment services specialising in autism only, the resources they require to operate effectively, and how they operate in the context of wider health services would be appropriate and timely. Lay abstract When a child or adult is referred for an autism diagnosis, clinicians from different backgrounds work together to make a diagnostic decision. A few studies have asked clinicians in interview how they feel about diagnosis and what the challenges are. We interviewed clinicians in child and adult assessment services in England, and from different professional backgrounds, about the challenges of autism diagnosis and the factors that might influence the assessment process. We found that there were a number of challenges in autism diagnosis, especially when someone coming for diagnosis was considered to be near the diagnostic threshold. Clinicians told us that making a diagnosis was like creating a ‘narrative’: looking at many different factors that told a story about a person, rather than just looking at the results of diagnostic tests. Clinicians do not always agree with the results of those tests and have to use their specialist clinical judgement to make decisions. Clinicians were concerned about the amount of time people have to wait for an autism assessment, and the resulting pressure on the assessment process. The findings of this work can help us to understand how diagnosis happens and consider ways in which it can be improved for adults, children and families coming for assessment, as well as clinicians.