LoriB.me

Working is hard. I think it is hard for most people because it is something you have to do for so many hours of your life. Some jobs are harder than others, but having to put so much time and energy into something can become onerous under the best of circumstances.

In many ways, my job is easy. I like what I do. I enjoy learning the latest technologies and solving problems with logic. I work from home. If all was “right” with my brain, I think that I would probably be making a lot of money working for someone else right now.

All is not right with my brain. I am autistic. I don’t want to get into an argument here about how my brain is just “different” or how the world should be accommodating to my needs. I believe that those things are true, but they are not factors in my continuing quest to live a happy life without being a burden on anyone.

Somewhere, there exists a perfect balance between doing enough responsible things that I feel like I am contributing something to the world and to the people I love, and having enough downtime to stay sane and recover enough energy to do more of those things. That balance is hard for everyone, but I think it can be especially hard for autistic people.

I am easily overwhelmed. Too many sounds, lights, colors, thoughts, people, feelings, or whatevers can drastically shift the balance and render me completely useless so that thinking and speaking sometimes become insurmountable tasks.

There was a brief period of time where I had everything pretty well aligned. I was living in California, taking meds that worked pretty well, was on SSI and working as a part of their PASS plan. My monthly SSI check was less, the more money I made that month, and if I made over a certain amount of money, I would not receive a check at all, but still got to keep my Medi-Cal benefits (health insurance). I could work as much as I could handle and I could ‘not work’ as much as I needed to.

When Karen and I moved to Baltimore, I lost my SSI because we no longer lived in our house, so it was considered an asset. Now, we no longer have a house, but we are married and I no longer qualify for SSI for that reason due to income.

I wish I could get SSI again. We are having a hard time financially and I am having a hard time working as much as I need to. I am having a hard time working at all lately because I can not do what I need to do in order to be okay enough to work, partially because of the stress that comes from needing to work. It is a vicious cycle.

I try to work, but I can’t think. I know that if I went to the water or did something else that makes me calm, I would be able to think clearer, but I feel like I should not be taking time off work to do that. Eventually, it occurs to me that since I am not working anyway, I may as well do something that will make me feel better, but I am so confused and stressed by the whole process that I can’t get my brain organized enough to leave the house. If you are a person who can think without problems, you may never notice the amount of steps required for a simple act like leaving the house. You have to stop what you are doing. You have to remember what you want to do. You may have to put on your shoes or your coat. You have to go to the door and open it and lock it back up, all while remembering where you are going and how to get there. You may have to drive or take public transportation. Forget about it. You can’t.

When I was on SSI none of that was an issue. I didn’t need to worry about not working enough because I was covered if I didn’t. Now, the less I work, the less money I make, and it has a direct impact on my and Karen’s quality of life. I have marketable skills and I work way more hours than I should need to in order to make a living wage, but since it takes me so long to get things done, and since I can not work a “normal” job, I barely make enough to supplement Karen’s income enough for us to pay our basic living expenses. I am lucky that we both have family who help us sometimes so that we can have a pretty good life, but constantly trying and failing to make my business work in a way that would allow us to stop worrying about money is wearing on me. I am exhausted and sad and ashamed and unable to do anything right now other than whine about it to the internet. You’re welcome 😉

I call myself autistic but if you call me a person with autism, I don’t mind. If you compare me to a puzzle it is ok. I think you are like a puzzle too.

I don’t speak for all autistic people. I don’t think anyone can.

I understand the reasons why person-first language can be damaging, and the importance of letting people know why that is. If you don’t know, Google it. You will understand too. Better yet, read the article Identity-First Language by Lydia Brown. It contains a well written analysis of why it is harmful to use person-first language, as well as links to other articles about the pros and cons of its usage.

It is important to educate people about these things, but I have been noticing a trend lately of articles that claim to speak for all autistic people, saying that we prefer to be called autistic. Nobody can speak for all autistic people. Not even other autistic people.

I have been an outcast for much of my life. It feels horrible. Even worse is feeling like an outcast in the autistic community.

In the 10 years since I have accepted the fact that I am autistic, I have met so many amazing people both online and in person. I have worked with many of them over the years to help us connect and find each other online. Now, I feel like I don’t fit in to a community that I helped to build.

It is possible that I am missing a big piece of the puzzle. I am not trying to be an asshole and piss people off by writing these things, but as I try to express what I am thinking, I realize that I am scared of even posting this due to backlash from a lot of people who I like to think of as my friends. I actually questioned using the word “puzzle”. WTF?

Today is Autistics Speaking Day and today I am taking the time to speak to other autistic people. I am asking us to keep our minds open to other people’s thought processes and realities, just as we ask them to do the same thing for us.

Disclaimer: This post is partly about educating people with good intentions who are trying to do the right thing, and respecting their processes if they come to a different conclusion. It does not apply to those who believe that autistic people are “less than” neurotypical people, or organizations like Autism Speaks who are actively spreading lies and harming people.