This was a research paper that I got to write for my doctorate program!
Lisa R. Macafee
Department of Psychology, California Southern University
PSY 8700 Psychopharmacology
Dr. Trachanel Cater
October 18, 2021
Anxiety and Autism
This paper analyses the psychological, neurological, biochemical, genetic, environmental and socio-cultural aspects of anxiety in autistic populations, with specific regard to psychopharmacological intervention. The terms autistic, autism, autism spectrum disorder (ASD), and neurodivergent are used interchangeably to refer to the autistic population. Individuals with autism often prefer identity-first language (autistic) instead of person-first language common in other disability rights movements (person with autism).
I will briefly share my own experiences with anxiety and autism. I am a 39-year-old autistic female. I suffered with undiagnosed serious depression and anxiety from twelve through twenty when I finally got a diagnosis of depression and later anxiety after leaving an abusive relationship. I missed obvious signs that the relationship was troubled and exhibited magical thinking and communication deficits but am highly intelligent and have learned to mask traits that make others uncomfortable. I started studying psychology in high school and learned how to avoid scrutiny from others. No one in my circles ever thought I needed support because I was functioning in a state of constant alertness and anxiety to cover my behaviors. I assumed that I had inherited a biological predilection for anxiety because everyone in my family has struggled with it. What I now know is that we were likely generations of intelligent autistics and suffered through crippling anxiety trying to live in a world that we did not understand without getting strategies to support our needs. I learned I was autistic after my son and daughter were diagnosed autistic and started researching autism to be able to best support my children. It became obvious to me in researching that I was also autistic, and I sought a diagnosis. It has been so much easier controlling my depression and anxiety with a toolkit of responses for autism and to understand why and how I am different from neurotypical individuals.
Anxiety disorders in autistic populations
Autism spectrum disorder consists of significant difficulties in communication and social interactions as well as repetitive or restrictive patterns of behavior, interests of activities. Estimates vary, but the rate of autism is currently about 2% of the population and is growing. For autistic individuals who are called “high-functioning” which means the individual has higher intelligence and is verbal, being aware of their own deficits and unusual behaviors very often leads to anxiety. Intensity of anxiety in autistic individuals often seems to scale with higher intelligence as the individual tries to adapt their functioning to societal expectations. “High functioning” autistic individuals are often able to match their performance to expectations, but at a great intellectual cost of anxiety. They need to focus on and control every movement, analyze every word, and anticipate other people’s reactions. Often the autistic individuals who seem to be “high functioning” are suffering immensely from the stress of masking. As such, the term “high functioning” is reviled in the autistic communities as it is often used to deny services to individuals who are not seen as needing them as much as someone “low functioning”, an ableist and discriminatory term. Overall, autism is a very individualized disability and needs individualized and flexible care (Wiltjer, Gentry Wilkerson, Winograd, Leetch, 2021).
Many factors contribute to the fact that autistic individuals often live with comorbid mental health challenges. Rates of anxiety diagnosis in autistic populations vary from 11.1% in adults to 41.9% in children, much higher than the neurotypical population (Deb, Roy, Lee, Majid, Limbu, Santambrogio, . . . Bertelli, 2021). 77.7% of autistic children also have a mental health condition and 49.1% have two or more compared to 14.1% of children without autism having a mental health disorder. Autistic individuals tend to have higher rates of mental health disorders as they get older. It is theorized that the communication challenges that are a part of autism cause increased social isolation which can contribute to depression and anxiety. To compound this, many high functioning individuals are not diagnosed with autism, but only with anxiety. If anxiety is a symptom of untreated autism, which continues to go untreated because they have a diagnosis of anxiety, treatments for anxiety alone are unlikely to be sufficient to resolve the care needs for the autistic client (Villalpando, N. 2021).
Oftentimes with autism, mental health is overlooked in favor of physical care. Mental health for children and adults with autism is especially important. While health insurance often covers treatment and prescriptions, there is a demand for care that exceeds the supply and many autistic individuals are not able to navigate the health care system to get the care that they need, causing more anxiety and stress to their lives. Anxiety is more commonly diagnosed in White non-Hispanic children with autism, while children of color with autism are often diagnosed with conduct disorder or ADHD when anxiety may be a more appropriate fit. There is racial bias in those who diagnose children and White children are often treated with a more open mind to the challenges that the child experiences while children of color are given less empathy and compassion. Hispanic children are diagnosed the least with any mental health condition, pointing to structural barriers and health care systemic bias. Autistic individuals experience difficulty getting mental health care. Autistic individuals who do not receive the mental health care they need are less likely to participate in sports or work and this lack of social contact becomes a self-replicating cycle wherein they become more isolated and anxious because they do not receive the services they need to function. Anxiety is the most common diagnosis for autistic adults (Drexel university, 2021).
Etiology of anxiety in autistic populations
An autism diagnosis means that individuals experiences communication and social interaction difficulties and has restrictive or repetitive behaviors. While no one yet knows why autism happens, it appears to be hereditary and there are certain exposures that increase the risk of autism in utero and early childhood. These point to both genetic and epigenetic factors. There are patterns of gene expressions and genes that are more common in people with autism (Wiltjer, Gentry Wilkerson, Winograd, Leetch, 2021). Autistic individuals share significantly more genes from Neanderthals which has brought up interesting conversations of autistics possibly being the mixed-genetic descendants of Neanderthals. Some Neanderthal traits carry over and autistic individuals have physically larger brains and skulls. Commonly accepted thought is that autistic individuals have different biological necrologies than the neurotypical. Our brains are physically different and that causes different behaviors and needs (Grandin, 2014).
As autistic children of higher intelligence grow older and become aware of their differences from neurotypical peers, they often experience anxiety trying to mask their autistic traits and fit in. As they get older, they often have trouble with social relationships, which causes anxiety. Living in a neurotypical world as a high functioning autistic means constantly masking, acting, suppressing self-stimulating behaviors (called stims), which all contribute to living in a state of hyper-vigilance and high levels of anxiety. For lower-functioning autistics, the behaviors they exhibit are direct responses to stresses that they cannot always articulate. Are the lights too bright? Is the desk too hard? Is the faint hum from the refrigerator that no one else notices sounding like a helicopter in its intensity and attention focus? Can the individual communicate any of this effectively to get their needs met? Autistic individuals experience the world differently from neurotypical folk and will have outbursts of behaviors when their stress levels are no longer bearable or when life demands are put on them that they cannot accommodate. If the autistic individual’s behavior causes those around them to be upset, this causes more stress and anxiety to the autistic individual who knows they are upsetting people, but often feels out of control to stop (Al-Oran, Khuan, 2021).
Another contributing factor to anxiety is the fact that autistic people generally experience more lifetime social, psychological, and physical stressors than their neurotypical peers and perceive these stressors more intensely. Autistic adults are often less able to cope with stressors because they are more socially isolated, experience more loneliness, and have less social support. These heightened stressors and the body’s response to them lead to worse physical and mental health. Autistic children more frequently live in poverty and experience adverse childhood experiences. These experiences and the social reactions received because of them can bring about chronic anxiety and hypervigilance. Autistic people are more likely to have been bullied, experience social isolation, and to experience physical, sexual, and emotional abuse because of social naivete. Autistic adults are more likely to un- or underemployed, have difficulty with the justice system, and experience social stigmatization. If routines relied on to function are disrupted, this can create a spike in anxiety over what may seem inconsequential to a neurotypical individual, but for an autistic is very challenging. Add to that the communication deficits that autistic individuals experience leading to greater social challenges and less robust social support networks that increase risk of suicide, self-harm, and psychopathology. All these factors contribute to anxiety (Moseley, Turner-Cobb, Spahr, Shields, Slavich, 2021).
Research analysis suggests that 61.5% of autistic adults and 41.9% of autistic children use some form of psychotropic medication. Among older generation tricyclic medications, evidence of efficacy in treating anxiety of autistic populations is lacking, and side effect management for individuals with autism may be more difficult than for neurotypical populations. For these reasons, tricyclics are not recommended in treating autistics with anxiety. When looking at SSRIs for use for children with autism, there has been weak research that suggests minimal benefit and increasing evidence of harm in SSRI use. Effectiveness of use of SSRIs in autistic adults shows minimal clinical benefit, with citalopram showing the most significant benefits. Benzodiazepines could be used for short-term treatment, but not for long-term use because of their cognitive affects and addictive quality. Likewise, high doses of beta-blockers are not recommended due to side effects risks. Overall, research does not condone or refute use of medications for autistic adults. Care should be taken to weigh the possible benefits against side effects, which are often more pronounced in autistic individuals. Providers should closely monitor any medications prescribed for benefits and side effects. Individuals with autism are often overmedicated with minimal benefit and (Deb, Roy, Lee, et. all, 2021).
While research in treating autistic anxiety using traditional psychopharmacological methods is lacking, some researchers are looking to non-traditional methods for atypical minds. CBD has been used increasingly among autistic populations to reduce anxiety and improve sleep, with 22% of parents and caregivers giving CBD to autistic children. CBD use in autistic populations has been shown in clinical trials to not only reduce anxiety and improve sleep for anxious autistics, but also decrease self-harm, hyperactivity, irritability, aggressiveness, depression and cognitive impairments. Given the limited legality of cannabis in much of the world, research is lacking and cannabis or CBD cannot be FDA approved because they are illegal at the federal level in the United States. There are promising signs of autistic individuals becoming more independent with the use of cannabis products. More research is needed (National organization for reform of marijuana laws, 2021).
As there have been no medications proven to to improve the lives of autistic individuals, researchers are looking into more controversial and novel approaches to find solutions. Psylocibin “magic” mushrooms and ecstasy in micro-doses have been shown to have benefits for autistic individuals where traditional medications have failed. Psilocybin has shown positive results in sub-hallucinogenic doses to improve anxiety and cognition problems for autistic individuals and is likely to be FDA approved in 2022 or 2023. Similarly, ecstasy or MDMA micro-dosing has shown significant improvement when autistic individuals used to reduce social anxiety and impairments in social functioning (Ponieman, 2021).
Mental health providers for people with autism often function as a life coach. Therapists often help an autistic person sift through the daily pressures and stresses that life brings and strategize ways to move forward that are overwhelming to an anxious autistic person. Many autistic individuals face additional barriers in accessing mental health services due to the nature of their disability. To reduce these barriers, it is suggested that clinicians try to reduce crowded environments, loud noise, bright lights, and long wait times or offer remote appointment services, which are often preferred for comfort and feelings of safety. Education on autism and encouragement to respond with flexibility instead of rigid responses can reduce fear of stigma and increase participation from autistic individuals with anxiety. Clinicians working with autistic populations need to be trauma-informed and respond with knowledge of how adverse childhood experiences common in autistic children can affect individuals with care not to re-traumatize them in treatment. Many mental health therapies that work well in traditional populations such as cognitive behavioral therapy will often need to be adapted for use in autistic population to be functional and prevent increased anxiety to the client. Clinicians should be aware of autism diagnostic criteria when treating seemingly non-autistic individuals with anxiety, especially women, who are underdiagnosed autistic, as anxiety is often a symptom of untreated autism. There are autistic-specific accommodations that can be provided and strategies for self-help when the individual knows they are autistic that dramatically reduce anxiety. Delays in identification of autism often lead to increased anxiety that is more difficult to treat (Roy, 2021).
This paper would not be complete without discussing the debate about ABA, or applied behavioral therapy. ABA is controversial and is generally reviled among autistic advocacy groups which describe it as dehumanizing and abusive. I believe that elements of ABA can be utilized without maintaining the discrete trial and compliance components of the original ABA. ABA can be used to help autistic individuals break up anxiety-producing tasks into smaller step-by-step routines and teach replacement behaviors for undesirable ones. For ABA to be ethical, the autistic individual needs to be involved in goal creation and listened to if they experience distress in treatment. Speech and occupational therapies are often used with autistic populations and can help reduce anxiety (Wiltjer, Gentry Wilkerson, Winograd, Leetch, 2021).
Treating anxiety in autism required multi-modal care. For example, while increased social media use among neurotypical teens has shown greater associations with depression and anxiety, when autistic teens engage in social media, if functions to reduce their overall anxiety. Autistic teens with anxiety appear to use social networking sites to build community, connect with friends in authentic ways, and have fun. This suggests autistic neurology is different in many ways from their neurotypical peers. (Lunn, Cogdon, 2021). Social-communication challenges are one of the contributing factors in anxiety among autistic individuals and treatment should focus not only on therapeutic interventions but also on helping the autistic individual find ways to involve themselves in a sense of community. Participating in employment or even in support groups has been shown to help autistic individuals increase their social skills and decrease their anxiety. Assisting individuals with interpersonal challenges and teaching social skills as they navigate the work and social realms will be important for their adaptation to being more involved in the community. Being involved in the community contributes to higher emotional intelligence, and both community involvement and emotional intelligence lead to reduced anxiety and higher quality of life. Particular care should be made to assist autistic individuals in periods of transition, which is often one of the most stressful times of life for autistics. Both support groups and social skills groups have been found to help autistic adults with anxiety by establishing a sense of belonging, a place where they can be understood, and see reflections similar to themselves in others to reduce alienation (Flores, Delariarte, 2021).
Autistic brain differences are not well understood. Traditional therapeutic methods for anxiety should be considered, but one treatment that has shown effectiveness in autistic populations is exercise. Exercise often provides autistic individuals opportunities for community engagement, to be part of a group class, competitive sport, or hobby, and gives many structured time outside in the sun. All of these factors are especially beneficial for autistic individuals. In many exercise environments social interactions are either minimal, structured, or conversation topics can surround the exercise instead of personal topics. This removes much of the stress of social interactions for autistic individuals. Some have found that exercise reduces cognitive difficulties, which makes it easier to converse with others, which reduces anxiety. We all know that exercise is beneficial, but for autistic folks, it can be important than for others! (Conboy, 2021).
One of the more important treatment needs for autistics with anxiety is crisis response care. Individuals need quality of care options in crisis beyond calling 911 or going to an emergency room where staff have little to no training in how to work with autistic adults. There need to be resources that autistic adults with anxiety can utilize to deal with mental health issues where they will get appropriate care. This is especially needed for autistic individuals of color, who are often misunderstood and experience racial bias in health care from a majority White health care team. Cultural competence and autism education are needed in our healthcare systems for effective care. (Drexel university, 2021).
Much research is needed as to effective treatments of anxiety for individuals with autism, adults with autism, and women with autism (Wiltjer, Gentry Wilkerson, Winograd, Leetch, 2021). While many autistic individuals are using psychotropic medications, little research has been conducted specifically on the use of prescriptions in autistic neurology and how they may deviate in effect from neurotypical populations. It is likely that autistic individuals are overmedicated without gaining significant benefits. While many SSRIs are used to treat anxiety in autistic populations, there is minimal and inconclusive research as to their efficacy. More research is needed not only to find more effective prescription drugs to treat autistic anxiety, but also to determine why traditional medications have limited efficacy. At this point we are left to conjecture about differing neurology requiring substantially different medical approaches, but there is not research explaining how or why (Deb, Roy, Lee, et. all, 2021).
More research is needed in treating autistic anxiety with cannabis, CBD, psylocibin, and MDMA. Initial studies have found better responses from autistic individuals using micro-doses of these substances that have been shown from SSRIs and other FDA approved prescriptions that work well for neurotypical populations but appear to have less efficacy for autistic populations (National organization for reform of marijuana laws, 2021).
Al-Oran, H., & Khuan, L. (2021). Predictors of parenting stress in parents of children diagnosed with autism spectrum disorder: A scoping review. The Egyptian Journal of Neurology, Psychiatry, and Neurosurgery, 57(1) doi:http://dx.doi.org/10.1186/s41983-021-00345-w
Conboy, M. (2021). How trail running helped ease anxiety from autism. Bow Valley Crag & Canyon Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/newspapers/how-trail-running-helped-ease-anxiety-autism/docview/2592770238/se-2?accountid=35183
Deb, S., Roy, M., Lee, R., Majid, M., Limbu, B., Santambrogio, J., . . . Bertelli, M. O. (2021). Randomized controlled trials of antidepressant and anti-anxiety medications for people with autism spectrum disorder: Systematic review and meta-analysis. BJPsych Open, 7(6) doi:http://dx.doi.org/10.1192/bjo.2021.1003
Drexel university (2021). National autism indicators report - high rates of mental health conditions and persistent disparities in care. 2021, Sep 01. Targeted News Service Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/wire-feeds/drexel-university-national-autism-indicators/docview/2567973257/se-2?accountid=35183
Flores, D. G., & Delariarte, C. F. (2021). Community participation as mediator of trait emotional intelligence and health-related quality of life of adults with high-functioning autism. North American Journal of Psychology, 23(3), 491-507. Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/scholarly-journals/community-participation-as-mediator-trait/docview/2577808179/se-2?accountid=35183
Grandin, T. (2014). The autistic brain: helping different kinds of minds succeed. Boston, New York: Mariner Books, Houghton Mifflin Harcourt
Lunn, S., & Cogdon, K. (2021). Autistic teens ‘at ease’ on internet. The Australian (Online) Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/newspapers/autistic-teens-at-ease-on-internet/docview/2595963608/se-2?accountid=35183
Moseley, R. L., Turner-Cobb, J. M., Spahr, C. M., Shields, G. S., & Slavich, G. M. (2021). Lifetime and perceived stress, social support, loneliness, and health in autistic adults. Health Psychology, 40(8), 556–568. https://doi-org.csu.idm.oclc.org/10.1037/hea0001108.supp (Supplemental)
National organization for reform of marijuana laws (2021). Survey - more than one in five U.S. caregivers report providing CBD to treat autistic symptoms. 2021, Oct 15. Targeted News Service Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/wire-feeds/national-organization-reform-marijuana-laws/docview/2582100040/se-2?accountid=35183
Ponieman, N. (2021). Magic mushrooms and ecstasy: New treatment for autism spectrum disorders? Benzinga Newswires Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/wire-feeds/magic-mushrooms-ecstasy-new-treatment-autism/docview/2590349567/se-2?accountid=35183
Roy, A. (2021). How can psychiatrists make mental health services more accessible for people with autism? BJPsych Open, 7(6) doi:http://dx.doi.org/10.1192/bjo.2021.1036
Villalpando, N. (2021). Is it autism? mental illness? both? how to navigate double diagnosis. Austin American Statesman Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/newspapers/is-autism-mental-illness-both-how-navigate-double/docview/2581626315/se-2?accountid=35183
Wiltjer, R., Gentry Wilkerson, R., Winograd, S. M., & Leetch, A. N. (2021). Autism spectrum disorder in the emergency department. Emergency Medicine Reports, 42(15) Retrieved from http://proxy1.calsouthern.edu/login?url=https://www.proquest.com/scholarly-journals/autism-spectrum-disorder-emergency-department/docview/2554269069/se-2?accountid=35183
Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender.
Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc).
I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook!
Lisa Macafee, autistic counselor with a hankering for social justice.