Autistic Experience
In recent years there has been a remarkable increase in research on autism spectrum disorder and available therapy and supports for children with ASD. Many adults today were diagnosed at a young age and had supports and therapies throughout their childhood. There are many systems in place for young children with ASD to help them through school, and although this is a vast improvement from where we were 30 years ago, these systems could still be improved and added upon. People with ASD, once they move onto college often lose most of the support systems they had in secondary school (Ashbaugh et. al.,2017). Also, there are still many medical and mental health professionals that lack an understanding of ASD. People with ASD need support in all parts of their lives and throughout their lives. This requires more research and education. One place this research should focus is on the subjective experience of people living with ASD so that it can be better understood what supports they need. In his book We’re Not Broken: Changing the Autism Conversation, Eric Garcia describes very well how the history of ASD and autism research has been written by neurotypical medical professionals and researchers as well as well-meaning parents of children diagnosed with ASD (Garcia, 2021). Very little research has focused on the subjective experience of existing and experiencing the world as a person whose brain works differently than a typical brain.
There is one study that stood out to me as very interesting because it did exactly that. Raymaker et al. (2020) conducted a study that looked at the subjective experience of “autistic burnout” in adults who had a professional diagnosis of autism spectrum disorder. The study went about defining the term “autistic burnout” by collecting information from 19 participants. Nine participants were part of an autism employment focused interview with a total of 45 adults who described their experiences at their place of work. Nine of the participants mentioned autistic burnout with no prompting from researchers. Their responses were added to this study. Ten other interviews were conducted where autistic adults were asked to define autistic burnout and to describe their experience with it. The purpose of this study was to define autistic burn out based on the subjective experience of autistic adults to better understand their needs and future research and supports.
The definition compiled from the information collected defined autistic burnout as chronic exhaustion, loss of skills and reduced tolerance to stimulus. Participants describes reasons for autistic burnout including life stressors, barriers to support, and masking. Masking is a term used describing an autistic person learning to hide physical traits, movements, and mannerisms to appear more like neurotypical people (Raymaker et al., 2020).
This study found that autistic burnout is an experience that many autistic adults have experienced and can cause loss of job, depression, as well as other difficulties (Raymaker et al., 2020). This study also discussed how long-term masking can be psychologically damaging to autistic people with autistic burnout being one of the symptoms. This study has many weaknesses. It is a small study. It lacks diversity in ethnicity and IQ and function level of people diagnosed with ASD. However, the goal of the study was to highlight the need for more studies. The primary author, Dr Raymaker, at the time of publishing, was unaware of any other study on autistic burnout (Raymaker et al., 2020).
Dr Raymaker’s study is a prime example of the type of studies that I believe we need more of. Autistic burnout is an experience that is unique to people with an autism diagnosis. Burnout is not, in and of itself unique, but how people with a diagnosis of ASD experience burnout is unique. Understanding that part of their experience will help people understand what types of supports are needed to help people thrive.
Another example of a study involving the subjective experience of people with ASD is a study performed by Hidetsugu, et. al. This study looked at empathy in people diagnosed with ASD, but instead of looking at empathy through only a neurotypical lens, as is usually the case, this study looked at whether empathy was different for others that had neurotypical traits as opposed to others with autistic traits. The study combined men and women diagnosed with ASD and IQ and age matched neurotypical men and women (2019). They then had the participants respond to stories, half of which had a protagonist with neurotypical characteristics and half of which has a protagonist with autistic characteristic. Hidetsugu, et. al. found that participants with an ASD diagnosis showed greater empathetic responses to stories with protagonists who had ASD characteristic (2019). A study like this can show us that the assumption that people who are diagnosed with ASD are incapable of empathy may have less to do with their neurology and more to do with how studies have been conducted. If people with ASD see the world differently, it would make sense that it would be harder for them to relate to neurotypical people. When they see someone they can relate to, it is easier for them to empathize. This is not to say that there is not a neurological reason for less empathy, but that part of the reason may also be a person’s ability to relate to another’s experience.
It can be difficult or take longer for people with ASD to access their own needs as adults because their brains work differently. They are subconsciously or overtly taught to look to neurotypical people to see how they should function. But the needs of people with ASD are different as are their experiences. A study that showed the importance of this is a study performed by Jordan et. al. (2021). This study interviewed people diagnosed with ASD about their subjective experience with low mood and depression. One of the things they found were those feelings of difference (without understanding why) lead to low mood and negative feelings. This highlights how important a diagnosis can be. When an individual has a diagnosis that is an accurate reflection of their experience and symptoms, they are better able to understand how and why they are different from other people. After coming to this understanding, the study found that many people with an ASD diagnosis accepted it as an integral part of their identity in a way that increased their self-esteem. This highlights how important accessible information about ASD, ASD supports, as well as examples of thriving role models in the ASD community are to the mental health and successful treatment of people diagnosed with ASD. Another finding that stood out to me in this study is that masking (which is that act of trying to hide autistic characteristics) increased low mood and depression and caused people to withdraw from social events (Jordan et.al., 2021). These results were also seen in the previously discussed study (Raymaker et. al., 2019). The reason why this type of study is so important is because many children diagnosed with ASD at a young age spent hours a day for years doing applied behavioral analysis therapy. This therapy is still considered the best therapy for children with ASD. When I was searching for master’s degree programs that focused on Autism, 60% of those programs were ABA programs. ABA is a very effective therapy, and it is a bit like a base ball bat. It is neither good nor bad. But you can use it to hit a baseball, or you could use it to hit a person. ABA has been used to reduce self-harm, to help children interact with other children and to get children to reduce their mannerisms that could be considered “odd”. In some cases, it was used to essentially teach children to mask their autism. We are now learning, through some of the studies I have previously mentioned, that masking can causes mental health problems for people with ASD. We wouldn’t know that if we only look at behavior. We know that because we have done studies that have looked at the subjective experiences and mental health of people with ASD. There are very few studies like the ones I have discussed. This is an area of research that needs more focus.
The study conducted by Jordan et.al. brought up another very important area of concern for people with ASD, and that is having mental health professionals that are specifically trained to work with people with ASD when they are struggling with low mood or depression (2021). When a person with ASD is struggling with symptoms of depression, their subjective experience may be very different from that of their neurotypical counterparts. Even if the experience is not very different, people with ASD can often have trouble identifying and describing their emotional experience. It is very common for people diagnosed with ASD to also experience alexithymia which is comprised of three main characteristics: difficulties identifying feelings, describing feelings and externally oriented thinking (Bloch et. al., 2021). In simpler terms alexithymia is a general difficulty with assessing one's own emotional state. Bloch et. al performed a study that found that the presence of alexithymia was more likely to determine feeling of depression than a diagnosis of ASD (2021). If it is difficult for a person to assess and describe what they are feeling, how do they communicate what they need to medical professionals? If a person with ASD and/or alexithymia tried to access psychotherapy for depression with a therapist who was not familiar with ASD and alexithymia it would be difficult for the clinician to be successful.
People with ASD do not just need help for their ASD in school as a child, they need professionals who understand ASD and all its implications in all of life’s other situations such as a regular doctor’s appointment or how it might affect the experience of grieving a loved one, or even something as simple as a little more time for projects at work etc. Davids et. al. performed a study with older adults with ASD who reported subjective executive functioning difficulties (2016). When compared to neurotypical counterparts in objective tests, the adults with ASD performed just as well if not better but it took them more time. This is an important study because an older adult with ASD could be functioning well enough that they could be performing tasks well (as seen in the study), while feeling subjectively that they are struggling. They also need more time. If people don’t understand why they need more time they could be perceived as lazy or procrastinating. This is a great example of what is often called an invisible disability. A person is able to function well enough that people assume they have no disability, but their subjective experience is that of struggle and stress. Often a few small accommodations and some understanding can completely change a person’s situation from struggle and stress to thriving. This can only happen if we have the information we need to educate people.
Resources
Ashbaugh, K., Koegel, R. L., & Koegel, L. K. (2017). Increasing social integration for college students with autism spectrum disorder. Behavioral Development Bulletin, 22(1) 183-196 https://doi-org.ulm.idm.oclc.org/10.1037/bdb0000057
Bloch, C., Burghof, L., Lehnhardt, F. -G., Vogeley, K., & Falter-Wagner, C. (2021). Alexithymia traits outweigh autism traits in the explanation of depression in adults with autism. Scientific Reports, 11(1), 1-7. https://doi-org.ulm.idm.oclc.org/10.1038/s41598-021-81696-5
Davids, R., Groen, Y., Berg, I., Tucha, O., & Balkom, I. (2016). Executive functions in older adults with autism spectrum disorder: Objective performance and subjective complaints. Journal of Autism & Developmental Disorders, 46(9), 2859-2873. https:doi-org.ulm.oclc.org/10.1007/s10803-016-2831-4
Garcia E. (2021). We’re not broken: Changing the autism conversation. Houghton Mifflin Harcourt.
Hidetsugu, K., Hirotaka, K., Toru, F., Minyoung, J., & Hidehiko, O. (2019). Do individuals with autism spectrum disorders help other people with autism spectrum disorders? An investigation of empathy and helping motivation in adults with autism spectrum disorder. Frontiers in Psychiatry, 10. DOI=10.3389/fpsyt.2019.00376
Jordan, A.L., Marczac, M., & Knibbs, J. (2021). “I felt like I was floating in space”: Autistic adults experiences of low mood and depression. Journal of Autism & Developmental Disorders, 51(5), 1683-1694. https://doi-org.ulm.idm.oclc.org/10.1007/s10803-020-04638-6
Raymaker, D. M., Teo, A. R., Steckler, N.A., Lentz B., Scharer, M. Santos. A. D., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in adulthood. 2(2), 132-143. https://doi.org/10.1089/aut.2019.0079