After I finished my Autism & Denial Series in July 2023, everything changed. My late diagnosis kept me from integrating into society. Not only was I traumatized by years of life that were ruined, but masking monotropism and indecision were keeping me from getting anywhere. The big question was what to do about it. Who could accommodate a 41-year-old autistic adult who had not integrated into society? Who should I turn to?
The only place I could think of was who I had been advocating to for nearly a year: my healthcare provider. But I had doubts that they would be willing to help. Meanwhile, I was struggling more each week to cope with the trauma of my late diagnosis. I foresaw needing occupational accommodations that no one was likely to be supportive of. Without them, I was unsure if I could keep myself from falling apart.
So I did what someone acting on survival instinct would do: self-preservation. I asked my counselor to arrange another meeting with the regional director. When she responded with a scheduled date of three weeks later, I plunged myself into the one thing I knew I could use to my advantage. I started writing a new presentation to explain why generalized care was not enough. Economic integration was the actual problem.
Then I did something unusual. I suggested hiring me to fix integration issues for autistic people. Thinking outside of accepted limitations to solve problems is a natural autistic trait. I also decided to face my problems rather than run from them. At 41 years old, I was unemployed for seven years because I had to figure out autism on my own. It took four long years. Now I had primary-source experience with a problem no one had solved.
The presentation date was set for August 14th. Thanks to my counselor, this time I was more confident. But I still felt weary. Not having my lack of integration identified, let alone accommodated, had ruined key developmental years of my life. I was skeptical that my care provider would take my support needs seriously because of how one-sided the meeting with the director was in April. Then, I found Dr. Damian Milton.
In his 2012 Double Empathy Problem Theory, he recognized that cross-neurotype communication problems impeded daily life simply through interactions with non-autistic people. Prejudice against autistic people’s support needs also persisted even after autism awareness and on-the-job training were prioritized. Influential corporations were of particular concern to me. So, I made sure to include this new information.
My second presentation, entitled “Where to Go From Here”, covered how my healthcare provider’s generalized services were not helping me integrate into society as an autistic adult. I incorporated a pitch for employment because I knew only late-diagnosed autistic adults had the experience to suggest effective accommodations for most of the potential support needs. It made no sense for me not to be included in the process.
My counselor’s careful guidance enabled me to reach my conclusions based on legitimate evidence. The director offered no comments after I finished. Her silence made me skeptical of a positive outcome. After all, I was late diagnosed. My support needs had been dismissed for years because I was stereotyped as high-functioning. I had proof of this from a 1994 psychological evaluation, just when I started attending junior high.
Finally, in mid-September, I received a response from the director. I was instructed to email my care provider’s human resources department for assistance with filling out written job applications. I made it clear that the problems were with interviews. Nothing I explained about the double empathy problem was taken seriously. They had ignored everything I presented, and I was not included in their accommodation process.
One month was lost waiting for the wrong accommodations. So, on September 27th, I submitted a formal letter stating why I had to decline. I had proprietary mental health presentation training that taught me why email was the worst way to communicate mental health needs. I was also concerned that my support needs would not be properly addressed unless the Double Empathy Problem Theory was taken seriously as well.
As an alternative, I again asked to be considered for employment. I felt I had a legitimate occupational value in my lived experience as a primary source. The socioeconomic integration issues that had been inhibiting my life for years were problems they had not fixed yet. My care provider could use my experience. I still believed I had to be included in the accommodation process. All my evidence was for nothing.
On October 11th, my healthcare provider responded with a letter declining to alter their original offer. I was stunned and soon overcome by despair. Here, my case manager and counselor empowered me to figure out what I needed. For the first time in my life, I knew what the problems were. I was also close to identifying what my support needs were. But the stress of advocating to such authority was too much. I had to ask for help.
On October 24th, I decided to request supervisory intervention, knowing full well that the director has much higher authority than my counselor and case manager’s supervisors do. I am suffering from higher levels of traumatic stress because I still have not integrated into society. Frequent reminders of this are getting harder to cope with because they are everywhere I look. If I get transferred to another provider, would it be discrimination?
So I also submitted a letter that chronicled this yearlong effort to advocate for autism and for my support needs. At the end of it, I asked for four new accommodations that I felt I needed to integrate into society. I am not sure if I have the right to ask for this. What I do know is that the most important step in advocating for your needs is having the courage to ask. The requested accommodations are as follows:
1. All employer hiring processes must be accommodated based on the likelihood that cross-neurotype miscommunications can easily and adversely affect the outcome. This can occur from the following: oversharing, being unfiltered, being too direct, missing social cues, info-dumping, insufficient eye contact, or through a predisposition of prejudice towards autistic and ADHD people. In order for this accommodation to be effective, I must be included in the process.
2. All employment considerations must accommodate autistic and ADHD people whose work history is impacted by being late or undiagnosed. In my experience, the lack of accommodations and earlier diagnosis have done irreparable damage to my employability. If we demonstrate a willingness to work or volunteer in our community, our work history should not be used to exclude us from employment consideration, or it will perpetuate our high unemployment rate.
3. Due to the extensive strain on our mental health, top priority must be given to accommodating those who are unemployed for any appreciable duration. In my experience of being unemployed for seven years and having no economic development at age 42, the strain on my mental health is at a crisis level. My lack of economic stability is a direct result of my autism and support needs being neglected. Each day that this remains unaccommodated puts my life at grave risk.
4. Due to the strain from masking monotropism interests while employed and the indecisiveness caused when choosing employment options that do not align with monotropism, connecting us to our monotropic interests with employment must be accommodated whether or not we have the requisite qualifications or a new position must be created. Speaking from experience, this would have saved me two decades of not integrating into society and boosted economic productivity.
For 23 years since high school, I have been trying my hardest to integrate into society. Most of this time was spent without even being aware of autism as an influence on my life. Now I know what has held me back. The double empathy problem has kept support needs from being addressed. Accommodations that will facilitate my economic integration are needed. What bothers me now is: how many are unable to do this?
For years, my judgment was clouded by not being aware of why I was having such difficulty integrating into society. How many of us are unable to advocate for even the most basic support needs? Every day that these accommodations are not taken seriously puts our mental health at risk. Each day, I now struggle with feeling as if I am running out of time. Whose responsibility is it to address the quality of mental healthcare?
I think we know who…
Continued here in A Journey of Accommodation, Part 3.
