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📆 14 Mar 2023 | ⏱️ 8 minute read | 🏷️ autism
I was just recently formally diagnosed with autism[1]. I haven't received my full report yet, but I was told that I probably can't work full-time and have moderate support needs. But before that, it was easy for people to dismiss my self-diagnosis. I've had a lot of practice masking (pretending not to be autistic), so people tend not to believe me when I disclose my autism.
Because of this, I've always been pressured to meet the same expectations as normal people (neurotypicals). I'd like to share how those expectations have negatively impacted my life and, towards the end, I'll talk about the importance of early autism diagnosis.
I've been pressured to hold down a full-time job to support myself financially. While this seems like a reasonable expectation to have of a normal person, it's been very difficult for me to achieve as an autistic person. Despite planning my career path[2] and trying different jobs, I've either been fired or quit first from every workplace I've been employed at[3], ultimately due to my inability to complete the job duties.
The only exception was when I worked at Southern Illinois University Edwardsville in the IT department. I would've been fired the first week if it were possible, but the university had some policy which made it very difficult to fire a student. It wasn't a normal competitive workplace environment, so I don't count it.
This isn't to say I can't work. Maybe I just haven't found the right job, but full-time employment is probably not in the cards for me and being 100% financially independent may also be impossible. I'm easily overwhelmed by my senses and I burn out much faster than neurotypicals. It helps when my coworkers, managers, and those who I rely on for financial support have realistic expectations of my ability to work, but that's often not the case.
Relationships are also challenging for a multitude of reasons. One reason is that people expect a level of effort towards the relationship that I just can't muster. They don't understand that I can't put the same amount of effort into our relationship as other people because I spend all my energy just to survive in a world that isn't built for me.
For instance, buying groceries for myself. First I have to walk to the bus stop where a loud diesel truck or motorcycle could pass me, making me shield my ears and leaving me overwhelmed. When I get on the bus, it's crowded inside with people all around me. The bus plays background music which I try to tune out so I can focus on where I need to get off.
After I get to the grocery store, sometimes I need to use the public toilet. But the automatic flushing is very sudden and loud and overwhelming. When I dry my hands under the air dryer, it's extremely loud and overwhelming. Then when I'm all done, I still have to get back on the bus and walk back home.
And that's just getting groceries.
When I have successful relationships with people, it's not because I push myself to do more than I'm capable of for them. It's because they accept my limitations and choose to be satisfied with whatever leftover energy I do have for the relationship.
Another reason relationships are challenging is because people don't realize how much they're asking of me. When I'm asked to show up to important events like birthdays, weddings, funerals, etc, I'm implicitly being asked to mask my autism for the entire duration of the event. If I just decline to show up, it seems very rude. On the other hand, sometimes I just don't feel like spending my entire day pretending to be someone I'm not just so neurotypicals treat me like a human being.
If I'm going to have a good relationship with someone, that person has to understand that, as an autistic person, it's not fair to hold me to the same social expectations as everybody else. I can't be expected to attend every birthday party, every movie night, etc. I need time alone to recharge. Before I found out I have autism, I didn't know how to communicate my limitations, so they weren't respected.
I was put through the public education system where I was expected by family and teachers to function in the classroom environment, make good grades, and stay out of trouble. For the most part, managed all that, but every other aspect of my life suffered for it.
I was surrounded by dozens of other students and felt pressure to socialize with them. But when I tried, I was bullied, excluded, and made fun of as early as elementary school. It was a hostile environment, so I learned to mask my autistic traits. I felt isolated and alienated being surrounded by people my own age who I couldn't relate to. I didn't even learn social skills from public school since being autistic makes it difficult to learn social skills naturally.
In the mornings, I was so sleep deprived that I had to rely on others to wake me up just for me to fall asleep two or three more times. In middle school and high school, other students thought I was high because my eyes were bloodshot from sleep deprivation. This continued in university where I tried to take short naps during lectures and work.
I spent a lot of time on homework which meant that I had little time or energy left for special interests, the things that make life worth living for autistic people. I often thought about my special interests at school, just waiting for the annoying inconvenience of public school to be over so I could focus on doing the stuff I actually cared about instead.
My mental health eventually declined so much from stress that I started feeling like I was on autopilot all the time. I daydreamed frequently, zoned out during lectures, and lost track of time. I couldn't concentrate and started forgetting things. For example, I'd often enter a room and forget why I was there and what I was doing.
I think I only realized how negatively public school had affected me after I dropped out of university for unrelated reasons. In hindsight, I never should've been in the regular public school system. There are other reasons besides autism that I wasn't a good fit for public school, but autism was a major factor. Unfortunately nobody knew I was autistic, so I was put through the system anyways like a square peg in a round hole.
It's very common for people like myself with low-to-moderate support needs autism not to get diagnosed until very late in life when the damage has already been done. I've struggled to keep a job and support myself. I've stumbled my way through every relationship and social interaction. Education took a huge toll on my mental health as I sleepwalked through it. I had no idea why life was so hard for me. Other people just blamed me for it, saying I "wasn't trying hard enough", whatever that means.
Getting an autism diagnosis mostly hasn't changed the way people treat me. Even after diagnosis, the people who were jerks to me before are still jerks. The people who downplayed my symptoms and denied my condition before still do. And the people who were nice to me before are still nice.
The crucial difference is that getting diagnosed has completely changed how I think about myself. My past now makes sense because I have the correct context with which to interpret it. Even though it's hard for me to keep a job or maintain relationships, at least now I know why and I don't have to blame myself any more. I don't have to feel guilty for not meeting others' expectations of me because those expectations were never reasonable to begin with. I now have a way to advocate for myself. My condition is legally recognized and I'm afforded certain protections under the law.
I got diagnosed this year at 24 years old. I'm just now teaching myself basic emotional intelligence skills, skills I desperately needed but was never taught because I wasn't diagnosed early. I consider myself lucky to have been diagnosed at all, but I can't help imagining what life would've been like for me if I'd been diagnosed earlier and gotten early intervention. A lot of pain, struggling, and confusion could've probably been entirely avoided.
There are people who get diagnosed at age 30, 40, or even later. To me, that's a tragedy. High support needs autism gets plenty of attention because it is usually obvious when someone has it. Low-to-moderate support needs autism is not as obvious. We need better ways of detecting it early on and intervening so that nobody else has to endure the hardship myself and others went through.
🔗 1: I was just recently formally diagnosed with autism
🔗 3: I've either been fired or quit first from every workplace I've been employed at
Copyright 2019-2023 Nicholas Johnson. CC BY-SA 4.0.