The concept of accommodations for autism and ADHD is well known. Unfortunately, our lived experience with adversity clouds our judgment. Because our support needs have been marginalized for so long, we often see accommodations as impossible to achieve or something we should not ask for. Nobody will listen to us. Nobody will accommodate our support needs. They are too far out of reach. So why ask? They are possible.
Who should we approach for our accommodation requests? Knowing who is legally bound to attend to accommodations varies by country of residence and their legal system. The first and most important step in advocating for your needs is having the courage to ask. Join me as I chronicle my journey to request new accommodations from my healthcare provider. The beginning of my self-advocacy started here.
My journey first began in June 2022. With the help of two community volunteers, I discovered that autism was at the center of major life issues I had been struggling with. When I shared this knowledge in a support group meeting, a community volunteer and mother who had autistic children offered me a chance to give a presentation about autism resource needs. I threw myself into the task because I trusted my instincts.
For a long time, I had been perceptive to subtle clues that led me to my conclusion about autism. When I did research on social media for the presentation, I found unmet resource needs for ages 21 and older across the United States and the UK. So I wrote it to prove what I felt hurt my life the most: the high-functioning label had kept my support needs from being taken seriously. I later found that this was due to prejudice.
Soon after I finished writing my presentation, I recognized a critical opportunity. I had mental health services through a major healthcare provider. They needed to know what I found. I took my presentation to my case manager, who recognized the importance of me advocating for my information. She brought it to the attention of her supervisor. He evaluated it and agreed to arrange a presentation with a regional director.
This took place on September 22, 2022. The director’s reaction was of particular relevance to the research I had done. She indicated that I confirmed her worst fears. Going back as many as 20 years, when she herself was a counselor, the director had a hunch that autistic people may have been left behind. This presented a serious problem of neglect, involving an untold number of late as well as undiagnosed autistic adults.
The director secured a second opportunity for me to give my presentation. Four months later, on January 19, 2023, it took place before a forum that was new for me: a company-wide virtual town hall. It seemed to be well received. Up to this point, I had observed a lot of autistic people on social media. Interacting with some of them fed a sense of urgency; I felt that my own autism needed to be addressed better than it had been.
Fortunately, I had someone helping me that I did not have before. In November 2022, I lost confidence in my counselor’s ability to address my support needs. I was unaware that I was not integrating into society, even though my case manager’s skilled assistance facilitated trying employment service providers. The timely suggestion to try a new counselor paid off. My confidence and self-advocacy skills improved.
I was about to discontinue counseling before the switch. I had no idea what to do about the aimless misdirection of my life. My new counselor listened to my concerns and helped me explore the issues that I struggled with. As my self-confidence increased, I started trusting my natural instincts. After the January presentation, I started recognizing a need for occupational accommodations based on my struggles with employment.
For years, all of my efforts to make employment decisions were crippled by indecisiveness. While I was working, I struggled with strain on my mental health. I was also fired from my last job in 2016 for an unidentified cross-neurotype miscommunication prevalent with autism. This was before I was diagnosed in 2019. The more seriously I took these issues, the more I knew accommodations needed to be discussed.
My counselor continued to guide and facilitate my self-advocacy to the regional director. This culminated in a joint session and meeting with the three of us on April 5th. I spent hours preparing to discuss my conclusion that accommodations would be needed with hiring processes. I never had a chance to advocate for my position. The director explained how their hiring system worked. That was the end of the meeting.
My counselor saw how one-sided the exchange was and pointed it out to me afterwards. I would later identify this as a prime example of Dr. Damian Milton’s Double Empathy Problem Theory. I knew how hiring processes worked because I had been employed before. Yet, why was I not given the chance to explain how easy it is for autistic people to be discriminated against? Instead, my accommodation concerns were dismissed.
In the weeks that followed, at least two separate times, I requested that my counselor inform the director that I wished to make a request for accommodations. But my requests went unanswered, even though I had done two presentations. I kept writing about autism through the month of April in an effort to understand more. As assertive as I often was, my counselor never told me what I wanted to hear just to make me feel better.
On several occasions, she took me by surprise by pointing out behaviors that I needed to improve. It never occurred to me that she was taking my autism seriously. She also continued to facilitate my self-advocacy in spite of the director’s intention that we no longer communicate. Then, in May 2023, everything changed. Thanks to my case manager, a chance discovery about autism and PTSD yielded new clues.
I was discussing with my counselor my suspicion that my late autism diagnosis may have been traumatic. Unexpectedly, she started asking me a bunch of questions. Afterwards, I asked her what she had done. She screened me for PTSD, and the results were favorable for a positive diagnosis. I was shocked. I was also impressed by her taking the initiative to screen me when my previous counselor suspected nothing.
Using my suicide attempt survivor experience as a guide, I sought to cope with my late diagnosis by writing about it. The emotional impact of what I uncovered defies description. It turned out that I was in denial of intense trauma. My diagnosis had been so late, at age 37, that it caused permanent damage to my socioeconomic development. I was now a trauma survivor strictly because my autism had been marginalized into adulthood.
One look at my resume was proof of the cumulative damage from my lack of consistent economic development. I was unemployed more because I was unable to decide on a career path or a typical job. Masking my monotropic employment interests caused increased stress, even while I was working. I also developed symptoms of chronophobia because I feared that I was running out of time to integrate into society.
Being unemployed for so long had left me with zero economic stability, despite being 41 and a capable college graduate. I had not moved out yet from living with my parents. If their health failed, my living situation could falter in a matter of weeks and destabilize my mental health. All of this became clear to me when I coped with the denial of my late diagnosis in July 2023. Such a lack of integration should have been addressed.
But there is more…
Continued here in A Journey of Accommodation, Part 2.
