Back in April, I decided to take a break from The Cameron Journal. Over the past several months, I’ve spent time healing, recovering, sleeping, and letting my creative energies refill. I’ve lost friends, gained new friends, and finished my first semester of my MFA program. I came back to The Cameron Journal in September, and it was an adjustment because of my new mental health diagnosis.
I finally figured out why I’ve had so many problems in my life. It all started with a random YouTube video late last year. I started watching this channel from this Australian guy named Paul. He does videos on Aspergers/autism, and I was watching one of his videos, and I realized that I had said many of the things he was saying and had similar thoughts. I had never considered myself to be someone on the spectrum. I decided to keep watching. Watching got me thinking that I might be autistic too. I decided to seek a diagnosis.
This was no easy thing. I started by calling the Autism Clinic at the University of Washington here in Seattle. I figured that they would be able to help me. I had no luck there. They would treat, but not diagnose. I reached out to contacts and kept calling numbers. Weeks began to pass as the voicemails of people unable to help me kept piling up. I called the other people they recommended. I called the people that those people, who still couldn’t help me, recommended. I was excited the first time I found someone who was taking patients, but there was a hitch; they couldn’t see me until October. It was a year-long wait.
I do know that part of my issue is that I am on medicaid (Obamacare expansion includes folks like me, being an artist is many things, but it doesn’t pay well) and I wanted to try to get it through my insurance rather than wait months to slowly save up the money. The cost out of pocket would be $6,000 (one quote I had been given) and the reality is that it would be months before I would have that kind of cash to spend. It would be a massive sacrifice. So, my quest to find someone to diagnose me (and get it covered) continued. Then, I found someone who was opening up her clinic, which means not only could she see me, she could see me in a timely manner! It was a connection about 4 contacts deep, but I took the chance and made the call. This person had a 4-month-long waiting list, not so bad, and I decided to take it. Four months was better than a year.
In March, after many surveys, appointments, and much paperwork, I was officially diagnosed with Autism Spectrum Disorder or ASD. I also was diagnosed with ADHD, sleep onset disorder, and anxiety. I thought my problem was solved, and I would get numerous recommendations, support, and other things that I needed to adjust to life with Autism.
But none of that happened.
I did not realize how few resources there were for adults with autism, especially “high functioning” people like myself. I’ve had jobs (so many), I own a business, I’ve had multiple girlfriends, I have two degrees, I have friends, I drive a car (and have done so professionally) I can talk and seemingly operate normally in the world. However, the difficulties that I have in society like relating to people, keeping a relationship, navigating social situations, or creating career opportunities seem to have very little advice. State mental health agencies are of little help either.
The fact that my autism doctor told me, “here’s the paperwork you’ll need if you ever need to apply for disability” are words that I never thought I would hear said about myself. She quickly followed up with, “but I think you’ll be fine.” What if I’m not? I never thought I’d be looking at applying for disability.
It has also changed the way I see my childhood. Parts of my childhood where I thought I was being irrational now are obvious autistic meltdowns. Many parts of my trauma were triggered by that, and traumatic things happened to me because of the way my brain is wired. It’s been an eye-opening experience.
I’ve been depressed since that time. I’m still working on figuring out the right combination of medication. I had an SSRI before, and now we are in the middle of changing it. I’ve been introduced to the wild world of ADHD medication and balancing out all these chemicals in my brain has been a real chore, and I’m not done yet with that process. It is a process that can lead to all sorts of interesting side effects.
I’ve met some great people. I joined a supportive discord server and facebook group. I’ve met a whole host of new friends. I’ve learned so much. I’ve interviewed several others with autism and people who are doing wonderful advocacy. I’ve contributed my genetics to research and participated in research studies.
I feel like my brain is broken. I got a reason for why everything in my life seemed to go wrong and somehow, it was made my situation worse. I realize now, more than ever before, that the world is not built for me or my success. I’m a neurodivergent, bisexual, black man. I get +10 points for male privilege and then -30 for the rest, leaving me with -20 overall. How could I move forward? What did this mean for my past? Is this why I had always run into a wall? Is this why I couldn’t get a job or build a successful business? All roads seemed to point to this singular detail. It was a crushing relief.
If you read articles online, which are usually about children, autism advocates and experts will tell you that autistic people grow up to lead perfectly normal lives with the right support and accommodations. The numbers are a bit more stark. 88% of autistic people are unemployed. 9% are married (although most of my new autistic friends are married somehow). It isn’t a wonder why the unemployment stats are so high. Most working in many jobs, especially office jobs, are more about office politics than anything else. Employment is essentially a popularity content and one that autistic people are not equipped to win. I would argue that in fact it’s rigged against us from the start.
The constant refrain I hear from people like me is the same thing I’ve said for quite some time, “I just want to work.” For myself, my brain can’t begin to keep up with the various intrigues of office politics. I just don’t understand it, and my brain just can’t comprehend the information. I don’t get the social cues, and I can’t combat the gossip about myself. I have recently learned that being a “know-it-all” and a “try-hard” are social killers. Nobody wants someone around who constantly reminds them about things they don’t know or makes them look lazy to management. Autistic people are usually very talented at what they do, and we’re ready to dive in and put our shoulders to the wheel and get stuff done. This is not really how the world works. Still others have sensory issues that should be accommodated and aren’t, or need clear direction on tasks and expectations rather than being left to guess about it.
Then there’s the social issues with autism. You can’t always pick up social cues. It can be hard to tell when to cut into conversation. I learned many of these skills the hard way, but I am not perfect at them. Many autistic people “info dump” where they just keep talking with a fire hose of information. Even for me, a fellow autistic, it can be overwhelming. For a neurotypical person, it’s very off-putting. Autistic people usually have special interests that are often far different from the interests of other people, and it can be hard to relate to an autistic person. It can be hard for autistic people to relate to anyone else.
Then there’s maintaining friendships and all that entails. This is difficult with executive function issues and the fact that our brains don’t understand relationship degradation. Autistic people won’t bother to talk with someone for months and pick right up where we left off as if no time had passed. Meanwhile, other people know exactly how much time has passed, and they feel more distant. This all adds up to a special kind of loneliness that can be crushing. Living the autistic life is not an easy path.
Living the Autism Life
The autism/adhd life is not an easy one. I’ve spent the last 6 months navigating a new world of intellectual disability and medication. I’ve got stable meds (after a few disastrous experiments) and they do help with the executive function deficits with adhd and autism inertia. However, I can’t help but think that autism life in our society is just not worth the squeeze. How to advance in your career? How to find love? How to function? These mysteries still elude me. It’s like, I found the answer to why I’m different, but now I don’t know how to move forward, especially as a person of color. I’m confused, and a bit scared of an uncertain future.
I think back to my youth and what I felt back then and why I did all the things I did. I could have kept to myself. I didn’t have to live the crazy life that I’ve lived. I didn’t need to go to college or grad school. I didn’t need to run events, create art or anything else. I just needed to stay home and keep to myself.
The autistic plight can be summed up in one conversation. In one exasperated chat with a fellow aspie/autist I declared, “I just want the whole world to be happy and wonderful and welcome me and my ideas with open arms and validate me for who I am and embrace it; but that doesn’t exist.” To which he said, “…pretty much every aspie I know right there, myself included.”