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OARacle Newsletter

Autistic teens with intellectual disability are at risk for mental health disorders, particularly anxiety. In fact, anxiety occurs at higher rates in autistic teens/adults with intellectual disability (53%) compared to non-autistic individuals with intellectual disability (17%). Assessing anxiety can be particularly challenging given teen communication and behavioral differences. Caregivers are often required to identify and anticipate triggers for their teens’ emotion dysregulation and must carefully observe sometimes subtle shifts in teen behavior that indicate increased anxiety.

Yet, despite these assessment challenges, it appears that teens experience a wide range of anxiety symptoms such as specific phobias (for example, fear of dogs, loud noises, shots/needles), social worries (such as being embarrassed or judged), generalized anxiety (such as worry about the future, fear of making mistakes, perfectionism), separation anxiety, fear of change, and obsessive-compulsive disorder.

The more we know about the nature and constellation of anxiety symptoms in autistic teens with intellectual disability, the better positioned we are to treat these symptoms. After all, left untreated, anxiety can have lasting negative consequences on the health and well-being of autistic individuals and their families.

Our research team has attempted to gain understanding of anxiety symptoms in autistic teens with intellectual disability through comprehensive interviews with parents done before and after our adapted cognitive behavioral therapy (CBT) treatment, Facing Your Fears: IDD. Over the course of the interviews, we noted a range of specific phobias in autistic teens, such as fears of shots/blood draws, dental/medical procedures, loud noises, animals, and bad weather. While specific phobias are not unique to this population, medical phobias may pose more significant consequences to autistic teens given high co-occurrences of seizure disorders, gastrointestinal problems, and immune deficiencies.

Assessment of Unique Challenges

Many families shared that medical phobias create enormous family stress and stress on the medical system; families recount the horrors of needing four people to hold down their teen for shots and blood draws, delays in administration of important COVID vaccines given heightened fear, and repeated missed dental/medical checkups. Clearly, these phobias can exacerbate pre-existing medical conditions and maintain anxiety. Further, 67% of autistic teens with intellectual disability are on medication and may have inappropriately managed medication and/or excessive long-term use of medication as a result of their medical phobia.

Contrary to commonly held beliefs that social and generalized anxiety disorders may occur less frequently in an intellectually disabled population given difficulties with abstraction and inferencing, these anxiety subtypes were actually reported as the most common primary anxiety subtypes within our research program to date. Common social fears include fear of making mistakes in front of peers, asking for help or clarification, being teased, and feeling heightened anxiety in social situations. Other frequently reported worries include being viewed as different, future-oriented fears (e.g., not being able to drive or live independently, fear of parents’ dying), and difficulty letting go of past events/wrongs.

Many of these worries may be warranted or justified given life’s challenges, however, preoccupation with and persistence of these worries can be excessive, interfering, and out of proportion. While teens with higher cognitive abilities have a greater probability of being diagnosed with social and generalized anxiety than teens with intellectual disability, both anxiety subtypes are seen across the entire autism spectrum. The pattern of increased social and generalized worries as youth enter adolescence is in line with a developmental progression of anxiety and has important implications for therapy.

Limited Treatment Options

Despite experiencing extensive anxiety, autistic teens with intellectual disability are extremely limited in their treatment options for anxiety compared to their neurotypical peers or autistic peers with average intellectual abilities. Best practice in the treatment of moderate-to-severe anxiety in neurotypical populations includes medication management and evidence-based interventions such as cognitive behavioral therapy. But for autistic teens with intellectual disability, medication management is often their only treatment option besides applied behavior analysis. This is due in part to the dearth of specialized mental health providers and the lack of evidence-based mental health interventions.

Researching Solutions

For these reasons, our research group is adapting the original Facing Your Fears intervention for autistic teens with intellectual disabilities. We are examining its effectiveness relative to treatment as usual. CBT approaches consist of psychoeducation, such as building positive self-statements and teaching strategies to manage physical symptoms of anxiety, and graded exposure — facing fears a little at a time. While CBT has not been commonly used in autistic teens with intellectual disability, we aim to identify what anxiety subtypes might be best treated using CBT and if there are specific factors that might impact treatment outcomes, such as language level, autism symptoms, among others. If positive outcomes are achieved, we may challenge the existing paradigm that individuals with intellectual disabilities are unable to access cognitive and emotion-regulation coping strategies.

Adolescence can be marked by shifting manifestations of anxiety symptoms. It is also an important time for teens to increase their independence, particularly when it comes to managing their anxiety and implementing coping techniques. Capitalizing on that desire for independence can provide a natural opening to shift from caregiver/adult-directed coping strategies to teen implementation of skills. Our goal with Facing Your Fears:IDD is to create a group treatment that supports teen competence and capacity for self-regulation, self-calming, and bravery. Ultimately, we hope these results will yield positive wellness outcomes for teens and their families.

Audrey Blakeley-Smith, Ph.D. is a clinical psychologist and an associate professor in the Department of Psychiatry at the University of Colorado Anschutz Medical Campus. Her clinical and research interests are in mental health and developmental disabilities. Dr. Blakeley-Smith was fortunate to receive OAR funding from 2016 to 2018, which supported her efforts to adapt Facing Your Fears,, a cognitive behavioral therapy intervention for anxiety, to meet the cognitive, communication, and behavioral needs of autistic teens with intellectual disabilities. Results from this feasibility study served as pilot data for a currently funded grant through the Department of Defense.