On October 24th, 2023, I submitted a letter to my healthcare provider requesting four accommodations. I requested supervisory intervention as well. Each day that I waited increased my already high level of stress. None of the accommodations had likely been requested before. Research led me to conclude that I needed them. But my evidence was also based on an autistic client that my care provider had accommodated.
Without warning, they discharged me from all their mental health services on February 13th, 2024. The reasons I was told were suspicious: I was not making enough progress, I was not meeting my goals, and they did not believe they had what I needed. How does one of the largest and most innovative healthcare providers in the US get away with such a potentially discriminatory action? Only time will tell what happens next.
After I submitted the accommodations request, I wrote the first two parts of my Autism Accommodation Series to document what the letter said. I hoped to prevent my care provider from discharging me by documenting what was happening. But by November, I was exhausted. In June, I coped with my late diagnosis and discovered that I never integrated into society. As a result, I had no economic stability at age 42.
This must have been why I felt as if I was running out of time. The trauma put me in survival mode, which forced me to figure out what strained my mental health as fast as I possibly could. One of the key contributing factors was a decision-making problem linked to monotropism. Therefore, I needed it to be accommodated. However, I believed the trauma had now pushed me into a no-win scenario with my healthcare provider.
Dr. Damian Milton’s Double Empathy Problem Theory indicated that discrimination was common for autistic people. Since 2020, I have been involved in no fewer than four incidents. I had no reason to believe my care provider would take my accommodation request seriously. Dr. Milton’s theory also made it clear that communication problems were common as well. I had a lifetime of experience to know just how accurate he was.
One mistake could ruin advocating for what I now knew were critical support needs. Trauma also had me compromised. And the only people I could turn to were those I trusted the least. I had no choice. I asked for supervisors to intervene, hoping they would be supportive. It took until November 14th to get a meeting with my counselor’s supervisor. I finally met with my case manager’s supervisor on December 5th.
It did not go well at all. His view was that case management was case management and had little to no connection with mental health. Jim, just tell us what you need. Yet he said that he had already read my accommodation letter from October. At this point, I started to sense that something was wrong. I expressed an interest in working for their autism center. Shortly before he left, I started having a panic attack.
My case manager, who was there with me, saw it unfold. I devolved into crying and intense feelings of distress. The supervisor never did anything about the meltdown. My counselor saw how shaken up I was the next day. But she had an astonishing four-week scheduling gap afterwards that was blamed on busy holidays. Over the exact same time period as the previous year, I had two appointments with her. I felt I was being neglected.
Starting on December 9th, I wrote my second informal theory to prove that monotropism needed to be accommodated. And I had proof. Until now, I had concealed where the data came from. My case manager had a client late-diagnosed in her 20s as both autistic and having PTSD. She was unable to pick a field of employment because nothing aligned with her autism-driven interest in music. This caused her PTSD-level distress.
My case manager and I compared the similarities to my case on April 26th, 2023, as can be seen in my previous writings. I integrated the data into my Monotropism Employment Theory and waited. The end of 2023 was the most stressful I had experienced, and it was due to my lack of accommodated economic integration. When I had the next appointment with my case manager on January 5th, there was no progress.
Through an employment services provider, my case manager’s client had completed job readiness programs. She was now successfully employed in music. My healthcare provider had accommodated her autism support needs. But they were dismissive about those same needs with me. When I finally had my next counseling session on January 16th, I filed two complaints about another scheduling gap, this time at the start of February.
During my next appointment for case management on January 31st, I asked that a memo be sent to the two supervisors. I insisted that I was unable to proceed with case management unless the monotropism was accommodated. And I reminded them that my case manager’s client was accommodated. I needed to be too. Then, I got a troubling voicemail from my counselor’s supervisor on February 13th. So I called her back.
This was the supervisor I had met with in November about my accommodations. I asked what was wrong. I was to be discharged. What followed was an increasingly desperate plea on my part to retain services, at least with my counselor, whom I depended on for continuity. The discharge was non-negotiable. It came from corporate management and included the director I had done my autism presentations for.
Before the call ended, I cautioned her that, ‘As a suicide attempt survivor, a relapse is possible because they were disrupting my mental health services.’ Suddenly, this supervisor became aggressive. She accused me of threatening suicide and then threatened to call the local crisis center to have them come to my parents’ house. Yet, I made no such threat. I now feared for my safety. Could she have me forcibly detained against my will?
I struggled to de-escalate the situation. I raised my voice and insisted I was not suicidal, until she claimed that she would not contact the crisis center. Whether that was true remained to be seen. I had paranoia attacks the rest of the day because I feared it would happen. So I quickly told both of my parents about the discharge. Over the days that followed, it took every shred of strength I could muster to maintain my composure.
I was still expected to attend the February 14th counseling time slot so this counseling supervisor could transfer my mental health services. But I called that afternoon and asked to reschedule. I was far too traumatized to be anywhere near that supervisor. It is now March 8th. No one has called me back yet. I went from waiting for accommodations to a potentially unlawful discharge that has put my mental health at risk.
During the final appointments I had, I was strongly encouraged to pursue trauma therapy. I repeatedly declined and insisted that my accommodations be attended to because, unlike years past, I now knew exactly what the problems were. Neglect that led to my late autism diagnosis destroyed my socioeconomic development. The lack of accommodations for monotropism still inhibits my economic integration.
Trauma therapy will not solve these problems at their source fast enough to maintain my mental health. Yet, through my former case manager, this healthcare provider accommodated a client who had an identical problem with monotropism. She was last known to be gainfully employed and thriving. I had been drawing their attention to her case for months. Now, my mental health is in peril because no one will defend my autistic civil rights.
Who do we turn to in a situation like this? Most autistic people do not have influence or experience finding capable lawyers. Neither can we afford the potential legal costs nor handle the merciless media exposure. In my Autism Advocacy Series, I said that “contrary to governing authorities who insist that we trust the laws, accommodation requests are not necessarily going to be taken seriously.” The laws do not protect us!
The Americans with Disabilities Act of 1990 will only protect those who can afford to go to court and are lucky enough to win. By writing a revealing article such as this, what if my care provider terminates the care I have left? I depend on it for three medications. I am powerless. Last July, it was said to me about the ADA (1990), something that now sticks in my mind: “The fight for intellectual disability rights is not over.”
When is it actually going to start?
