Feasibility Study of Addressing Anxiety in Children With ASD and Intellectual Disability Through the Facing Your Fears Program

Autism spectrum disorder (ASD) is a neurodevelopmental condition that is characterized by social communication deficits and restricted and repetitive behaviours. Its prevalence is estimated at 1 in every 59 children or 1-2% of the population in Asia, Europe, and North America. There are about four males for every female who receives the diagnosis. While the exact cause is still unknown, it is postulated that it may be due to a combination of genetics, environmental, and epigenetic factors. There are a number of other disorders that are associated with autism spectrum disorder, such as intellectual disability, anxiety, Fragile X, and ADHD. Of these co-morbid conditions, anxiety is one of the most prevalent comorbid psychiatric problems in children with autism. Prevalence rates of anxiety in individuals with autism range between 1.7-84%, depending on age and subtype of anxiety. Meanwhile, prevalence range of intellectual disability in individuals with autism ranges between 50-80% based on previous studies. In individuals with autism and intellectual disability, there is an even greater risk of anxiety, ranging between 13.6-43%.

However, despite the high prevalence rate of anxiety within this population, there are not a lot of studies that have looked into assessments and treatment for individuals with autism and intellectual disabilities. Most studies on anxiety in autism have been in individuals without a concomitant diagnosis of intellectual disability. Only two reviews have previously evaluated therapy for anxiety in low-functioning individuals with autism, without "low-functioning" being equivalent to a diagnosis of intellectual disability. In fact, a lot of individuals with intellectual disabilities are usually found ineligible to be part of studies as a lot of assessments in these studies rely on self-reports of internal states. Limitations of cognition and communication skills may make reliability of responses to assessments challenging. Thus, while there are some interventions available to individuals with autism and intellectual disability to address their anxiety, to our knowledge, there are no studies that have looked into evaluating the effectiveness of these interventions in larger groups. There are also no studies that have looked into the feasibility of using existing interventions for addressing anxiety in autism, in children with autism and intellectual disability. Facing Your Fears program is a cognitive behavioural therapy (CBT) program specifically designed for children with autism who are experiencing anxiety. However, previous studies have been limited to children who are identified as high functioning autism. This will be a feasibility study on the use of the Facing Your Fears program in addressing anxiety in children with autism and intellectual disability.

Potential participants will be invited to join the study through assigned research staff who will introduce the study, the Facing Your Fears program, and assessed for eligibility. Once they are deemed eligible and express interest, they will be invited to come in for an appointment to discuss and sign consent and assent forms. Once the consent and assent forms are signed, the guardian will be interviewed by an assigned research staff following a screening interview. The screening and baseline phase will include a structured interview regarding the participant's medical history, and standardized questionnaires and assessments. These assessments will include:

1. SCARED/MASC-2 (parent and child report forms for anxiety symptoms)
2. CBCL (parent-reported scale used as a screening measure for internalizing and externalizing behaviours of a child (preschool and school-age), which includes measures of social deficits. CBCL subtests include anxious/depressed, withdrawn, social problems, thought problems, attention problems, somatic complaints, and aggressive and/or delinquent behaviours)
3. ADOS (standardized play assessment for autism diagnosis)
4. WASI (Weschler Abbreviated Scale for Intelligence)
5. PedsQL (brief measure of health-related quality of life in children and young people composed of generic core scales: physical functioning, emotional functioning, social functioning, and school functioning)
6. Satisfaction Questionnaire (only administered post the 12 week period) Participants who meet eligibility criteria based on inclusion/exclusion criteria will be enrolled in the study. Those who do not meet criteria will be considered a screen fail.

Following the screening/baseline period, eligible participants will be assigned to treatment groups of 5-6 child-parent dyads who will meet once a week for 1.5 hours, over a 12-week period (N=24; 12 participants per cycle). Participants will be assigned to the cycles based on the order in which they are screened and enrolled. The first 6 parent-child dyads deemed eligible will begin treatment in cycle 1. The remaining 6 parent-child dyads deemed eligible will begin treatment in cycle 2. These weekly sessions will be a combination of didactic and practice sessions, with the last 30 minutes reserved for parent training. Participants will be provided a schedule of sessions to attend. Facing Your Fears workbooks for both parent and child will be provided for use during the sessions. Assessment forms and questionnaires will also be provided for the parent to answer during this visit.