Today, one in fifty-nine children are diagnosed with Autism. The characteristics of Autism often present in poor communicative and social skills, restricted or inappropriate affect and poor emotional regulation. Most of these individuals have significant functional impairments in one or more areas of their lives. Treating individuals with ASD can be challenging enough, but when you add depression and anxiety to the mix, the challenges become exponentially more difficult. Often times, this can lead to misdiagnosis or sub-optimal treatment (Chandrasekhar, Sikich, 2015). Part of the problem is that, while there are many studies related to Autism and many on depression and anxiety, there is minimal research on the comorbidity factor.
Since expressive language is often deficient or impaired to a degree, commonly used screening tools can be unreliable. Individuals may not be able to appropriately identify or label their symptoms, and those around them often attribute the symptoms to the ASD diagnosis. Moreover, individuals with ASD may be less likely to engage in clinical studies, or if they do, their ASD status is not factored into the study. Further complicating diagnosis is the overlap in symptomology of ASD and those of anxiety and depression. Key features of ASD include social anxiety, withdrawal and perseverative, anxiety-based thoughts, making it difficult to tease out clinical anxiety and depression from Autism-related symptoms (Leyfer et al., 2006). As a result of these variables, specific prevalence rates are hard to identify.
A meta-analysis of over 7,000 studies (of which 66 met inclusion criteria) in The Journal of Abnormal Child Psychology revealed an estimated 4x risk of depression among individuals with ASD, compared to their neurotypical peers (Hudson, Hall, Harkness, 2017). In yet another study that examined 93 children and adolescents for the presence of clinically significant depression, the research found that, while only approximately 30% of individuals with ASD self-identified with depressive symptoms that rose to the criteria of clinical significance, the parent report of the same individuals placed that number at a much higher level – more than 75% (Wijnhoven et al., 2019). The discrepancies in these results points to several important factors and areas for future research. First, it is possible that individuals with ASD do not have the necessary self-awareness to distinguish their feelings from the normal spectrum of feelings. Second, parental involvement appears to be key in appropriately identifying these at-risk individuals. Routine screening of not only the individual, but also of the parent, should be incorporated into ongoing treatment. If we were only to look at the self-report of individuals with ASD, we risk losing a large percentage of the population. This can lead to the previously discussed undiagnosed comorbidity and resulting sub-optimal treatment.
What does clinical depression and anxiety look like in an individual with Autism? How does the presentation differ from neurotypical individuals or individuals with ASD without clinically significant comorbidities? First, we go back to basics. When we evaluate a neurotypical individual for anxiety and depression that rises to the level of functional impairment requiring intervention and treatment, we look at their symptoms on a spectrum. Previous versions of the DSM included a Global Assessment of Functioning scale (GAF), which gave a numerical score from 0-100 in order to quantify the degree of impairment the individual was experiencing. Though eliminated from the DSM-V, the GAF can still be a valuable guidance tool in assessing where on the spectrum of functioning an individual exists. For any mental health issue to meet the criteria for a diagnosable psychiatric illness, there must be some level of functional impairment relative to the individual’s baseline. If we take this theory and apply it to individuals with ASD, even if their baseline functioning is very different from the norm, we can still make an assessment of how functionally impairing the depression or anxiety is, relative to previous levels of functioning. The benefit to this methodology is that it can reduce the confusion of distinguishing between what is a characteristic of ASD vs. a comorbid disorder. Anxiety and depression can present in many different ways in all individuals, regardless of their neurobiological status. By identifying and individualizing each person’s spectrum of functioning, we can create a person-centered diagnostic tool that will help guide our treatment interventions.
With streamlining and simplifying the identification process of comorbid disorders, we can now look at the treatment implications. Typical treatment modalities are not geared specifically towards the Autism population, which creates a whole new set of issues for providers and clinicians. Where psychopharmacology is beneficial for the neurotypical individual, those on the Autism spectrum can be more susceptible to side effects of medications, reducing their effectiveness and can lead to medication non-compliance. Traditional, non-medication treatments such as insight-oriented or classic Cognitive Behavioral Therapy (CBT) show limited benefit due to the concrete nature of an Autistic individual’s thought process. This makes identification, verbalization and exploration of one’s feelings more challenging. Additionally, these therapies rely on an individual’s willingness and ability to tolerate uncomfortable feelings and thoughts, something that individuals with ASD find exceedingly difficult. A key feature of Autism is a generalized sense of discomfort in their daily lives. Social-emotional discomfort is a daily struggle for these individuals and the impulse to avoid further sources of discomfort is strong. As such, there is less overt motivation to engage in treatment (National Autistic Society, 2018).
According to the Anxiety and Depression Association of America, careful and selective psychopharmacological interventions combined with aspects of Cognitive-Behavioral Therapy can be beneficial in reducing depression and anxiety in individuals with ASD. They specifically recommend mindfulness-based treatment combined with emotional literacy skills in order to improve their ability to regulate their emotions as well as increasing their ability to tolerate emotional discomfort. Concrete examples as well as visual aids and even virtual reality scenarios can help individuals recreate a situation without necessarily triggering their anxiety. New medication treatments, such as Oxytocin, vasopressin receptor 1A antagonists and cannabinoids are being researched by ADAA for possible future use.
If there is one take-away from this article, it is that the research on this topic is severely lacking. Much of the data and treatment formulations are based on meta-analysis and anecdotal data. In order to have appropriate and effective treatment for comorbid anxiety and depression with Autism, specific research needs to be done. This leaves clinicians with the dilemma of identifying and treating these individuals. But, as we have discussed in this article, using a whole-person, family-systems approach and individualizing assessment of functioning, we are better equipped to identify those in need. And by modifying existing treatment modalities by thinking out-of-the-box in terms of the tools we use, we can make measurable and sustainable differences in our client’s lives.
Mandy H. Breslow, LCSW, MS Ed., is Founder and President of Indie Living, Inc. She is also an Independent Special Education Consultant and Counselor.
Mandy H. Breslow, LCSW, MS Ed., is a social worker in practice for 22 years. She earned her Master’s in Social Work in 1997 from Adelphi University and her Master’s in Early Childhood Education in 2008 from Touro College. Her work has focused on improving the lives of children and families dealing with Autism. Mandy’s professional career includes direct service to clients both in mental health facilities and in their homes; community education and advocacy and teaching original curricula to psychiatry residents. She has a private practice in Long Island, NY and is the founder of a developing housing initiative called Indie Living. Mandy lives on Long Island with her husband and has two teenage sons with Autism.
Burchi, MD; Hollander, MD. Anxiety in Autism Spectrum Disorder– Anxiety and Depression Association of America
Chandrasekhar, MD; Sikich, MD (2015). Challenges in the diagnosis and treatment of depression in autism spectrum disorders across the lifespan
Leyfer, Folstein, Bacalman, Davis, Dinh, Morgan, Tager-Flusberg, Lainhart (2006). Comorbid Psychiatric Disorders in Children with Autism: Interview Development and Rates of Disorders
Hudson, Hall, Harkness (2017). Prevalence of Depressive Disorders in Individuals with Autism Spectrum Disorder: A Meta-Analysis– The Journal of Abnormal Child Psychology,
National Autistic Society (2018). https://www.autism.org.uk/about/health/mental-health.aspx
Wijnhoven, Niels-Kessels, Creemers, Vermulst, Otten and Engels, (2019). Prevalence of comorbid depressive symptoms and suicidal ideation in children with autism spectrum disorder and elevated anxiety symptoms – The Journal of Child and Adolescent Mental Health