Monotropism is a fundamental aspect of the autistic life experience. The task of deciding what long-term employment to pursue is one of the most challenging life decisions a person must make. Recent evidence suggests there are serious complications that can and do occur when monotropism is not accommodated with employment decisions in both the short and long term.
This theory will examine the evidence in order to demonstrate significant impacts on life expectancy and socioeconomic integration for autistic people.
Monotropism Employment Theory (MET) states that an autistic person, regardless of their diagnostic status, may experience problematic disruptions to their mental health if they lack a pathway to their occupational interest as early as high school age. Masking monotropism is already known to cause increased stress. If left unaccommodated, inconsistent employment can occur over time, which will inhibit economic and, eventually, social integration. The strain from each factor involved is exponential and can reach crisis levels differently from person to person.
Introduction
Thanks to Dinah Murray, Mike Lesser, and Wendy Lawson for their research on the theory of monotropism, we have a glimpse into an integral part of autistic thinking: the selection of interests. Our autistic brains need to focus our attention more strongly on sensory information in order to engage with what interests us in our environment. This occurs at a subconscious level that is too deep for voluntary control over it. What would happen if one of the most impactful interests needed to facilitate daily life, employment, were to be disrupted? It required no small amount of time or luck to discover the truth about monotropism and employment decisions.
By sharing my findings, I hope to demonstrate that occupational accommodations are needed as soon as possible. The benefits of such accommodations will be astounding but will require previously unrealized and prompt cooperation between healthcare providers, employment service agencies, and employers. A problem of this magnitude will require nothing less.
Monotropism complications in the context of autistic demographics
Autistic people come from a wide range of demographics, a number of which are still barriers to quality of life. This is important because of the Double Empathy Problem Theory. We will experience marginalization for autistic behavior, and then more according to certain demographics. Not all will have the same level of difficulty with employment decisions. But there will be autistic people whose demographics present additional challenges with occupational support needs and monotropism. Therefore, this should be taken seriously as a high priority.
Additionally, no demographic should be underestimated. An autistic person’s quality of life depends on the timing of their awareness and understanding of autism’s impact on their life and how early economic integration is facilitated. For example, my parents provided a stable upbringing and were fortunate with employment as well as housing. Yet, my more favorable demographics did not facilitate an earlier diagnosis, economic integration, or the prevention of suicide. This makes the Double Empathy Problem Theory a central factor for all autistic people.
The power of finding more than one
For most of my life, I was seen as a “high-functioning” individual and disregarded as being autistic. I missed crucial socioeconomic milestones needed for integration, despite my honest efforts to succeed in both areas. When I was finally diagnosed in 2019 at age 37, both healthcare providers I had failed to accommodate autism in adults. I was forced to rely on autistic people to attain most of my knowledge. It took four long years. Then, in April 2023, I found a source of similar difficulty with employment decisions that confirmed my worst fears.
A woman in her early 20s had developed critical stress levels before graduating college with a liberal arts degree. The stress was so disruptive that she pursued treatment within a short time afterwards. Autism was identified first. However, the more telling discovery was what came next. A trauma therapist identified post-traumatic stress disorder (PTSD). When I found out, I quickly recognized I had the exact same set of circumstances at her age, save for one tragic detail. I was a suicide attempt survivor. It was not known if she had progressed that far or not.
I immediately double-checked the information. We were approximately the same age at the time of college graduation. We both graduated with the same degree. That degree choice was for the exact same reason: indecision. Before graduation, our autism was undiagnosed. Our stress escalated, leading to a significant disruption of our mental health. Hers was a PTSD diagnosis. Mine was a suicide attempt after seven months. Thus, it is logical to conclude that, had I been evaluated then, I too could have been diagnosed with PTSD. This is significant.
PTSD in relation to autism and masking
Two facts became abundantly clear in light of this person’s case in conjunction with my own. Post-traumatic stress disorder is not a mild concern for any diagnosis known to require it. It is my understanding that in order for PTSD to be considered, the mental health stress needs to be strong enough to trigger a diagnosis. This is serious in and of itself. Furthermore, her PTSD was closely tied to her inability to make career decisions at the time. That indecision was likely the result of one thing in particular: masking her monotropic interests to the point of distress.
How can I know that she was masking her employment interests? Masking is defined as a natural defense mechanism. If we do not know we are autistic, we will be more likely to mask our behavior. This is because, until we know it, autistic people have to mask defensively every day to blend in with our neurotypical environment. We were both undiagnosed at the time of being indecisive, and neither did we have a pathway to our employment interests. These must have been barriers that forced us to mask. Evidence suggests that masking causes stress to peak.
The strain of masking monotropism is not a positive experience that an autistic person willfully wants to endure. On average, it can feel rather unsettling. Evidently, strong PTSD symptoms do occur based on this young woman’s experience. There was no intervention for me, and it led to a life-threatening suicide attempt long before I knew I was autistic. Here was actual proof of serious short-term reactions with monotropism, which is theorized to be an integral part of our autistic selection of interests. I am ‘living’ proof of what happens over the long term.
The correlation between unaccommodated monotropism and suicide susceptibility
In May 2023, after I shared this initial data with her, my counselor unexpectedly screened me for PTSD. The results were favorable for a positive diagnosis. This led me to recognize that I was in denial of my late autism diagnosis. To cope with it, I wrote my Autism & Denial Series and uncovered repressed trauma from one year earlier. The incident, from July 2022, was severe enough that my memory blacked out for a 24-hour period. I was in the middle of writing my first autism presentation when I realized that my late diagnosis had, in fact, devastated my life.
Since graduating high school in 2000, I have attended college twice, held two full-time jobs, and held four temp jobs. But there was never an emotional attachment to any of it. I felt as if I were living someone else’s life. Indecision crippled my ability to choose what employment field to pursue. This led to a lot more unemployment overall, including since 2016, when I felt forced to stop applying for work to address my mental health. It is now evident that I must have reached another peak, as I had in 2003, because I felt close to another suicide relapse in 2016.
In fact, I have evidence as recent as December 5th, 2023, that proves unaccommodated monotropism with employment is an ever-present and serious problem. Between September and October, I was engaged in the back-and-forth of expressing a need for accommodations from my healthcare provider. We reached an impasse, and the strain was too much. On October 24th, I asked for supervisory intervention and submitted a request for specific accommodations. The first supervisor meeting seemed to go well, but the one on December 5th had a different effect.
As soon as the meeting concluded, my composure broke down. I felt an increasing need to panic, but I was not sure why. Before I left, I was near tears. Soon after I got home, other symptoms emerged. I lost the motivation to exhibit facial expressions. I experienced a loss of appetite and a diminished desire for social communication. Some of my reliable coping methods were ineffective. Worst of all, I had a total of two separate suicide ideations. One of them was a brief yet distinct plan. The first 24 hours were dreadful. This unrest took three days to subside.
Conclusion
The emotional detachment I experienced during active employment, the indecisiveness, emptiness, or panic I feel when pressed to choose what employment to pursue, the probability of PTSD and persistence of suicide ideation in relation to employment decisions, the distress I feel when unemployed because I want to work, and the traumatizing stress from having no social or economic integration are conclusive proof of one thing. Not accommodating monotropism to connect us to employment interests can be dangerously disruptive to our overall quality of life.
Not having my monotropism accommodated with employment or my autism diagnosed sooner has cost me the single most important years of my life for socioeconomic development. Now, at age 42, instead of being a reasonably productive and socially integrated member of society, I find myself so far from being a part of it that when I go out in public, I see everyone around me like I used to as a suicide attempt survivor: as if I do not belong here. Every day, I struggle to have the will to live. In spite of all this, I want to work. I just want to have a life.
Why am I reaching these conclusions before major healthcare providers have? Why was my care provider not more forthcoming to address these problems? What about disadvantaged demographics, such as women, minorities, or youth, who I observed have inadequate care even in developed countries? Why is unemployment not prioritized for autistic people? How many of us are lucky to be alive? The sooner that care providers, service agencies, and employers take this information seriously, the more lives will be saved. Sensible accommodations are needed.
Accommodations
Unprecedented occupational accommodations are needed, but what are they, and what are the potential benefits for employers to incentivize this cooperation? On October 24th, I came up with four accommodations. Due to the risk of cross-neurotype miscommunications, the first was to mandate protection during any part of the hiring process. Due to the damage to our work history from late diagnosis, the second was to mandate protection against discrimination, such as for extensive unemployment, if we could demonstrate having a desire to work or volunteer.
As a disability group, research indicates autistic people have the highest unemployment rate. It is not hard to ascertain the reasons why. So the third accommodation was to prioritize addressing unemployment. This theory exemplifies the fourth accommodation. We need to be connected to our skilled interests to avoid complications with monotropism that can be, in some cases, life-threatening. Once orchestrated, the unemployment rate would decrease. The potential locked within so many disadvantaged autistic people is a credible benefit. I am ‘living’ proof.
Let us solve the problem of autism and employment to ensure the future of innovation and productivity is never again a crippling problem of societal integration. Let us solve these problems before more lives are ruined. Where to go from here is forward by working together. Not just in cooperation. Actually working together for an integrated and productive future. We may struggle with social communication, but we may one day also help to break the innovative boundaries of distant stars and make stunning breakthroughs. Every innovation has a beginning.
Cooperation begins with a choice.
References
Botha, M., & Frost, D. M. (2020). Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population. Society and Mental Health, 10(1), 20–34. https://doi.org/10.1177/2156869318804297
Cassidy, S.A., Robertson, A., Townsend, E. et al. Advancing Our Understanding of Self-harm, Suicidal Thoughts and Behaviours in Autism. J Autism Dev Disord 50, 3445–3449 (2020). https://doi.org/10.1007/s10803-020-04643-9
Damian E.M. Milton DEM979@bham.ac.uk (2012) On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883–887, DOI: 10.1080/09687599.2012.710008
Davies, J., Heasman, B., Livesey, A., Walker, A., Pellicano, E., & Remington, A. (2023). Access to employment: A comparison of autistic, neurodivergent and neurotypical adults’ experiences of hiring processes in the United Kingdom. Autism, 27(6), 1746–1763. https://doi.org/10.1177/13623613221145377
Hedley, D., Uljarević, M., Hedley, D.F.E. (2017). Employment and Living with Autism: Personal, Social and Economic Impact. In: Halder, S., Assaf, L. (eds) Inclusion, Disability and Culture. Inclusive Learning and Educational Equity, vol 3. Springer, Cham. https://doi.org/10.1007/978-3-319-55224-8_19
Irion, Jim. “Autism & Denial Series.” Medium.com. Medium, 20 June — 13 July 2023. https://jimirion.medium.com/list/autism-denial-series-8852f90ba11c
Irion, Jim. “Where to Go From Here.” Medium.com. Medium, 14 August 2023. https://jimirion.medium.com/where-to-go-from-here-d6bddb13b3d2
Irion, Jim. “Time to Connect the Patterns.” Medium.com. Medium, 11 October 2023. https://jimirion.medium.com/time-to-connect-the-patterns-d055874c6e18
Irion, Jim. “Autistic Chronophobia Theory.” Medium.com. Medium, 11 October 2023. https://jimirion.medium.com/autistic-chronophobia-theory-a1225434edd1
Irion, Jim. “A Journey of Accommodation, Part 1.” Medium.com. Medium, 7 November 2023. https://jimirion.medium.com/a-journey-of-accommodation-part-1-2a68beab58b8
Irion, Jim. “A Journey of Accommodation, Part 2.” Medium.com. Medium, 9 November 2023. https://jimirion.medium.com/a-journey-of-accommodation-part-2-8d11ea355072
Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156. https://doi.org/10.1177/1362361305051398
Pearson, A., & Rose, K. (2021). A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Autism in adulthood : challenges and management, 3(1), 52–60. https://doi.org/10.1089/aut.2020.0043
Rumball, F., Happé, F. and Grey, N. (2020), Experience of Trauma and PTSD Symptoms in Autistic Adults: Risk of PTSD Development Following DSM-5 and Non-DSM-5 Traumatic Life Events. Autism Research, 13: 2122–2132. https://doi.org/10.1002/aur.2306
Shaw, S. C., Carravallah, L., Johnson, M., O’Sullivan, J., Chown, N., Neilson, S., & Doherty, M. (2023). Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 0(0). https://doi.org/10.1177/13623613231205629
Steven D. Stagg & Hannah Belcher (2019) Living with autism without knowing: receiving a diagnosis in later life, Health Psychology and Behavioral Medicine, 7:1, 348–361, DOI: 10.1080/21642850.2019.1684920
