Historically, autism has been blamed for the challenges autistic people face. Struggling to stay in school? Get a job? Make friends? “It’s because of the autism.” The belief is this: If autistic people are trained to behave like someone without autism, they will face fewer challenges. Under this framework, if autism is the problem, then removing it is the solution. This belief has led to interventions that attempt to improve autistic people’s probability of success in school, work, and social settings by teaching children to disconnect from their bodies and mimic behaviors of non-autistic peers.
Behavioral therapy programs across the United States train autistic individuals in daily behaviors such as proper eye contact, body language, and social “rules.” Each behavior is meticulously logged with a tally or number on a chart. Children are taught to keep their bodies from rocking and swaying and their hands from flapping about. They are given eye contact assignments and phrases to memorize. Concrete changes in behavior can occur quickly. Unfortunately, these interventions often result in unintended consequences. Under this framework, autistic children learn from school, home, and therapy that their bodies and minds are broken and the ways they exist and interact are wrong. They learn that their chances of being okay in the world are dependent upon changing who they are. This has significant emotional and psychological consequences that have lifelong repercussions (Kupferstein, 2018; Price, 2022).
Autistic people and their mental health are more complex than the external behaviors addressed by traditional behavioral therapies. Due to societal stigma around autism, many behaviors and compliance-based autism interventions are intended to mask autistic traits. Current research illustrates a significant relationship between masking autistic traits and mental health challenges (Cassidy et al. 2019). Rates of anxiety, depression, and suicidality in the autistic population are significantly higher than in the general population (Price, 2022). In order to better serve the autistic community, there needs to be a paradigm shift. Therapies must ensure that biases and stigma are not driving the interventions chosen for autistic people. Biases need to be questioned alongside each chosen intervention. If stigma is taken out of the equation, what interventions remain that can provide autistic people with the skills they need to thrive in our current society?
One of the most common early interventions for autistic people is eye contact training. In the United States, eye contact is valued and emphasized in most behavioral intervention programs for autistic youth. In reality, eye contact norms vary by culture and range from being considered disrespectful to respectful (Akechi et al., 2013). There is no universal right or wrong way to make eye contact. Similarly, eye gaze varies within the autistic population, and lack of eye contact is not indicative of attention or understanding. Some autistic people are better able to process a conversation with limited eye contact (Monk et al., 2010). Furthermore, eye contact training can be counterproductive to its own goals. Many autistic children start to make more eye contact when they feel well-regulated, safe, and accepted (Hadjikhani et al. 2017). Eye contact training immediately conveys that you do not accept them as they are and reduces the safety within the relationship. Ultimately, this does the opposite of the original intent: to facilitate relationships and connections. Eye contact interventions are based on cultural biases and stigma instead of on autistic processing.
Currently, autistic people have two options: we trust the outside world, or we trust ourselves. If we take the first option and trust the messages we get from the outside world, we learn that we are all wrong. The way we eat is wrong. The way we play is wrong. The way we make friends is wrong. We must ignore our bodies, ignore our minds, and listen to the professionals and adults who know better than our intuition. We must mimic neurotypical people so that we can exist in the world the “right” way. On the outside, we may now be able to blend in better with neurotypical people. We may have mastered the eye contact patterns, keep our hands in our pockets, and speak only when expected to. Ultimately, it feels better to focus all our energy on following the prescribed eye-contact patterns and thus miss out on the conversation and the opportunity for connection than to endure the shame that we have been taught to feel if we do not make eye contact in a neurotypical way.
While the intention is for the autism to be “trained out,” the autism instead gets “trained in.” Our autistic traits are buried deeper and deeper in our minds and bodies under layers of shame and superficial connections. We are left traveling through life as actors, masking who we are while trying to untangle the subsequent anxiety and depression (Cage & Troxell-Whitman, 2019). Unsurprisingly, masking behaviors are a predictor of suicidality in autistic adults (Cassidy et al., 2018). Behavioral interventions often pursue training without considering the autistic experience.
Just as biases and stigma inform eye contact training protocols, they can also drive communication-based interventions. The autism umbrella houses a variety of communication that differs from what might feel natural to a neurotypical person. For example, some autistic people communicate through spoken language, while other people use tools like tablets and letter boards to express themselves (Jensen et al., 2023). These tools are known as augmentative and alternative communication devices or AACs. For some autistic people, AACs are a vehicle for a wide variety of words when speech is limited or not possible at all (Prizant, 2022). Unfortunately, it is common for intervention programs to limit access to AACs because people in our society are expected to speak. AAC use can be slow and carry stigma. However, research demonstrates that removing an AAC device actually hinders language development (Jensen et al., 2023). Perpetuating the idea that autistic people must blend in through maintaining these training programs, like withholding AACs, is what is allowing the stigma to thrive. Here is an opportunity to reframe the narrative: Some people communicate with spoken language, and other people use AACs like letter boards or tablets. Spoken language is not the best and only route for everyone.
Of course, changing the narrative does not take away all of the hard parts. From the onslaught of sensory input at the grocery store to navigating the social terrain of the playground, growing up autistic is a feat in and of itself. For parents and caregivers, confusion and grief may reign as they seek to navigate services, supports, and futures in a chaotic swirl of shoulds and should nots. Yet, emerging research indicates that many autistic people see their autistic traits as contributing to a meaningful life and an integral part of who they are (Bottema-Beutel et al., 2021 & Price, 2022). From happy stims to deep enthusiasm, autistic joy is palpable (Prizant, 2022). The question is this: What interventions and accommodations do autistic people need to thrive without violating who they are? It is necessary to differentiate between goals to make people seem less autistic from important life skills that support health and well-being. In the flurry of early interventions and therapies, it is necessary to remember that “different” does not always equate to bad or broken, even if it is the status quo.
If we shift our understanding away from right and wrong, we will give children the opportunity to take the second option: to be true to themselves. Regardless of how someone’s autism presents, believing you are broken is not helpful. Instead, we can raise autistic children to believe: “My way of playing with toys is not wrong or bad. I can listen better when I am not focusing on eye contact, and that is okay. My passions are not wrong, and my communication style is not wrong. I can find other people who understand that autism is a neurotype and sometimes a disability, but autism is not a disorder. All minds have an important place in this world.” Instead of funneling autistic children through endless behavioral training, programs need interventions that are neurodiversity-informed and neurodiversity-affirming. Programming should be informed by the sensory perception variances and language interpretation differences of autistic individuals. Lessons should be chosen based on what is most aligned with an autistic person’s neurological wiring above society’s current expectations. Foundational skills that are aligned with who an individual is on the inside are the only skills that will be sustainable in the long term. Autistic children also need accessible content about who they are: their sensory systems, their communication differences– vocabulary to conceptualize the way their body and mind perceive their environment and how that may be different from their non-autistic peers. Knowing who we are is essential in effectively advocating for ourselves and necessary to feel comfortable enough in our own skin to possibly make some eye contact.
Rebecca Rosenzweig is an MSW student at the University of Southern California (USC), a group facilitator at the Neurodivergent Collective, and an autistic advocate. If you are interested in hosting a training on neurodiversity-affirming practices, you can contact her at rebecca.rosenzweig@gmail.com.
Citations
Akechi, H., Senju, A., Uibo, H., Kikuchi, Y., Hasegawa, T., & Hietanen, J. K. (2013). Attention to eye contact in the West and East: autonomic responses and evaluative ratings. PloS one, 8(3), e59312. https://doi.org/10.1371/journal.pone.0059312
Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism, 25(8), 2307–2319. https://doi.org/10.1177/13623613211035950
Cage, E., & Troxell-Whitman, Z. (2019). Understanding the reasons, contexts, and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 49(5), 1899–1911. https://doi.org/10.1007/s10803-018-03878-x
Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular Autism, 9(1). https://doi.org/10.1186/s13229-018-0226-4
Cassidy, S. A., Gould, K., Townsend, E., Pelton, M., Robertson, A. E., & Rodgers, J. (2019). Is camouflaging autistic traits associated with suicidal thoughts and behaviours? expanding the interpersonal psychological theory of suicide in an undergraduate student sample. Journal of Autism and Developmental Disorders, 50(10), 3638–3648. https://doi.org/10.1007/s10803-019-04323-3
Jensen, E., Douglas, S. N., & Gerde, H. K. (2023). Dispelling Myths Surrounding AAC Use for Children: Recommendations for Professionals. Inclusive Practices, 2(1), 30-36. https://doi-org.libproxy2.usc.edu/10.1177/27324745221144308 (Original work published 2023)
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4(1), 19–29. https://doi.org/10.1108/aia-08-2017-0016
Hadjikhani, N., Åsberg Johnels, J., Zürcher, N.R. et al. (2017). Look me in the eyes: constraining gaze in the eye-region provokes abnormally high subcortical activation in autism. Sci Rep 7, 3163. https://doi.org/10.1038/s41598-017-03378-5
Monk, C. S., Weng, S. J., Wiggins, J. L., Kurapati, N., Louro, H. M., Carrasco, M., Maslowsky, J., Risi, S., & Lord, C. (2010). Neural circuitry of emotional face processing in autism spectrum disorders. Journal of psychiatry & neuroscience : JPN, 35(2), 105–114. https://doi.org/10.1503/jpn.090085
Price, Devon (2022). Unmasking autism: Discovering the new faces of neurodiversity. New York: Harmony Books.
Prizant, B. M. (2022). Uniquely human: A different way of seeing autism (Updated and expanded ed.). Simon & Schuster.
