Often Undiagnosed but Treatable: Case Vignettes and Clinical Considerations for Assessing Anxiety Disorders in Youth with Autism Spectrum Disorder and Intellectual Disability

ABSTRACT

Varying rates of anxiety have been reported in children with Autism Spectrum Disorder (ASD) and Intellectual Disability (ID). Recent reports, using an adapted semi-structured interview approach, suggest that the risk for anxiety in these children is equal to that found in those with ASD and average or above average IQ. This wide range in rates derives from the challenges associated with assessing anxiety in those with limited language/severe developmental delays. Three case vignettes are presented to illustrate an approach for conducting a developmentally sensitive parent interview in order to detect anxiety in those with ASD and ID. Since accurate assessment of anxiety is critical to the important goal of guiding appropriate mental health treatment, practical assessment considerations from our research and the literature are provided including: 1) considering whether a child with ASD and ID might have an anxiety disorder that is undiagnosed, 2) using semi-structured interviews validated for children with ASD with a focus on behavioral examples, 3) considering the Defense Cascade or 6Fs, 4) considering physical symptoms of anxiety, 5) differentiating anticipatory anxiety/fearful avoidance from other underlying emotions, 6) considering idiosyncratic coping methods, 7) considering whether “distinct” areas of anxiety are present, and 8) considering clinician training. A discussion of developmentally appropriate treatment options for the three cases is included. Limitations and future directions regarding clinician training are explored.

Acknowledgments

We would like to thank and acknowledge the participants and their families who have taught us so much about the various presentations of anxiety. We are so grateful for you. During this work, Drs. Winder-Patel, Tudor, Solomon, Nordahl, and Amaral were supported by Autism Center of Excellence grant awarded by the NICHD (P50 HD093079, PI: Amaral). Additional support to Dr. Solomon was provided by R01 MH106518 and R01 MH103284; to Dr. Amaral by R01 MH103371. The project was also supported by the MIND Institute Intellectual and Developmental Disabilities Research Center (P50HD103526).

Disclosure statement

Connor Kerns receives royalties for an edited book on anxiety and autism published by Academic Press. In addition, she has received honoraria and consulting fees for training others researchers on the Autism Spectrum Addendum. No other potential conflicts of interest were reported by the authors.

Additional information

Funding

This work was supported by the National Institute of Child Health and Human Development [Autism Center of Excellence (P50 HD093079; Amaral), IDDRC (P50HD103526)]; National Institute of Mental Health [R01 MH103371 (Amaral), R01 MH106518 (Solomon), R01 NM103284 (Solomon)].