In early 2019, shortly after my diagnosis, I first utilized vocational rehabilitation services. My mother played a key role; she was convinced they could find me a job with a supportive environment for my disability. After a lengthy intake process, I was assigned to a wonderful caseworker who greatly helped me with workplace social skills. The details of signing up, collecting paperwork, and the overall process have since faded into a haze. After my hospitalizations, I was on so many medications that rendered me groggy constantly that so many memories of that time have faded. I do remember the office I went to. I remember some of the videos I watched to learn about workplace social skills, and I still have a good relationship with those who helped me several years ago.
For various reasons, I am now re-engaging or attempting to re-engage the support of vocational rehabilitation services. I filled out the form on their website last summer. I thought it might take six months. I received the required documents. I had to get the stack of them notarized and then sent back. I was assigned to one who I believe left the agency, and I have since been assigned to a new one. We played phone tag for months until, on my lunch break, I went to my local VRA office and spoke with someone in person. I also had support from a loved one who reached out to their respective contacts within the agency. I joked that we were using a full-court press to get a response, and I did finally get an answer. I heard from my caseworker that the diagnostic paperwork I had provided was too old. Too old, I said, I’m sure if I were retested, I’d still have autism. After asking some clarifying questions and reflecting, I decided to move forward with the assessments he recommended. Due to the fact that my mental health was in disarray when my functioning levels were originally measured, I’m curious to see where they would sit now.
When someone has gone through a crisis and a psychiatrist is trying to get the person ready to go home, it is difficult, if not impossible, to find the right balance of medication in the amount of time allotted. At the time, it took several weeks to see the significant improvements on the new medication that I’m still on to this day. I now take only one out of the eight medications I was once on. The inpatient psychiatrist had one week and wanted to make sure that I wasn’t a danger to myself when I was discharged. The unfortunate outcome was that I was groggy and had a difficult time functioning until I was able to wean off several of them. It took years to wean myself off all but the one medication that still plays a crucial role in managing my OCD. It is because of this that when I have gone back and read my diagnostic report, I have wondered what the results would be like if I tested today. Because it was a full workup, it did confirm the diagnosis of depression, and I’m confident that would no longer be the case. I will also always have autism, and vocational rehabilitation might be a service I will use again over the course of my working life. learning what the process is now, so that if I need to use it again, is a valuable experience. It is also a frustrating one.
After the most recent long-awaited and productive conversation with my case worker, I was also told a vital piece of paperwork I had submitted last year, or I thought I had, was missing from my file. So today, on my lunch break, off I went to a local UPS store to get another copy of this document notarized and sent it off. Now I wait for him to set up an appointment for the testing with an approved provider. I have also noted in my calendar that if I do not hear from this approved provider or my case manager by next Monday, I’m going to give them another call and, if needed, make another trip back to my local office to see what I can learn. I understand that government agencies are not beacons of efficiency and that this particular one is notoriously short-staffed. I also don’t think accessing services should be this difficult. Is it really important that I prove I’m disabled enough? I often wonder what is disabled enough to qualify for support services, and if this additional testing is the government’s way of denying me services that I pay taxes towards.
Something I often struggle to navigate is the fact that my disability is invisible and the fact that, amongst those with an autism diagnosis, I don’t seem to suffer in the ways those who share my diagnosis do. I’ve noticed that parents of children, specifically adult children, who have level 2 or 3 autism spectrum disorder often look at me with disdain when I disclose. There was one event where I attended with a loved one to support them, and it was for a nonprofit that supports those with any kind of disability. My loved one had stepped away to speak to someone else. Not knowing anyone else, he had introduced me to a group of ladies, one of whom was the mother of an adult son with autism. I said, “ I have level 1 ASD”. With that, she gave me a side stare with her lips pursed and in a voice dripping with poison said: “ he’s not like you, he’s not as high functioning”. I was stupefied. I might have appeared “high functioning” in that moment, but my ability to function in general depends on the moment. I’m acutely aware of the challenges and the lack of support for those with higher needs, and I hope, as I continue to educate myself on the needs of that community, I can serve as an ally and effective advocate they need as well. I often feel lost amongst the disability community. This was not the first, the last, or the only event that I have felt out of place in a space that’s supposed to be welcoming to those who are like me. I am somehow never disabled enough for the disability community and not normal enough for my neurotypical peers. Last Halloween, I sobbed in the car after a Halloween/ fall festival that was billed as friendly for those with autism because they were blaring loud music, and I didn’t have my hearing protection.
Having to leave events due to anxiety or unmet sensory needs is a common experience for those with autism. I imagine that if that mother had not judged me so harshly, we could have found common ground and discussed our shared experiences. In my brief time spent observing the autism and disability communities, I want to believe there is a lot we have in common. We all want to be seen as humans worthy of love, care, and dignity. I know parents whose children require care and supervision worry about what will happen to their adult children when they are no longer able to care for them. When I talk to my friends who have level 1 ASD but would like to live in some kind of supportive housing, but find the shortage disheartening, all I can think is, don’t we all have more in common than we think we do? In my experience with vocational rehabilitation, with my frustrations, all I could think is, if I wasn’t capable of being as persistent or if I was in actual dire need of assistance, what would the outcome be? Because so many of my dear friends are reliant on the paltry safety nets that exist and services I’ve become aware of since my diagnosis, I’m even more aware of the desperate need for change.
I cannot change everything on my own, but I have started listening to others’ experiences. I recently joined a program, and I’ve been hearing about other people’s experiences with their disabilities. I also am aware that the needs vary greatly for those with different levels of autism, and I can only imagine the frustration that people who struggle to fit into society more than I do have. I hope as a whole we can move towards a more inclusive world and more holistic wrap-around services for individuals who have a disability and their family members.
Living on the Spectrum 
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