Living with OCD and Autism (Different Brains Version)
As I write this article, I am laying in bed with my Samsung Galaxy S8 Plus phone, working on a Microsoft Word Document (this blog). In fact I was attempting to dictate this blog article. My brain cannot slow down enough and I always want to be working on something, but my thoughts are always going so fast that my hands can’t keep up. That is saying a lot, as I am a very good typist. When I write my eBooks for autism and neurodiversity advocacy, my team often has to go through the raw text and provide edits. It is like I am holding on to it (writer’s block) and then I spew and vomit it all over the page. Nice image, write? I mean, right???
That is one of the ways that my anxiety disorder and the obsessive compulsive disorder (OCD,which is an anxiety disorder) impact my life. I always need to be busy, even when I am trying to stay away from work and play a video game or my favorite racing simulator. I always have ideas, which is great, but I find it difficult to implement these ideas or relax when needed.
The actual OCD affects me by unwanted and intrusive thoughts. I might worry about something not going right, if I don’t go through with the compulsion that I need to do something over again. My behaviors can include things like getting in and out of bed, or putting my phone down twice (or however many times, until I feel it is “right” and I am at ease) or avoiding certain areas of the ground (when I was a child I would not walk in the crevices of cement or certain tile squares in the mall). These unwanted thoughts and compulsions can affect me in my work by taking up time and resources. If I am on Facebook and I feel the compulsion to hit the “Like” button until I feel at ease, it can take time away from my work. Sometimes I even feel the need to retype something.
As I grew older, the OCD manifested in different ways. As a teenager, during a big change in my life, I developed timely rituals such as showering at a certain time, shining my shoes on a Sunday night for the next school week, or cleaning my room. During adulthood, I would have routines and watch the same shows on certain nights, including WWE RAW. I would visit the same restaurants, not because the food was good but mostly because it was predictable. I knew what I was going to get, I knew the wait staff, and I knew the volume they played for their music or television. It made me feel comfortable. My favorite restaurants were Applebee’s and Mountain View Diner. If anything was ever off schedule, it would make me upset.
I find that there are similarities in how people with Autism, particularly those with high functioning ASD, also have OCD. Many people have been misdiagnosed with OCD before an ASD diagnosis, because of the similarity in routines. I myself was diagnosed late, and had the OCD diagnosis first. I do really have the anxious thoughts, but I also have the repetitiveness and restricted interests that made OCD apparent and “pop” out to the healthcare providers.
Autism Speaks says the following about the overlap of OCD and autism: “Repetitive behaviors and restricted interests are among autism’s core symptoms. A doctor or therapist unfamiliar with autism may mistake these symptoms for those of OCD. But they are different. A distinguishing hallmark of OCD is that the compulsive thoughts or behavior cause anxiety.” I find this very true as it was hard for me to get an ASD diagnosis. No one knew what it was that I was experiencing. My OCD masked the Autism, in a way, to the clinicians and little was known overall about ASD.
According to AppliedBehaviorAnalysisEdu.org : “A 2011 study found that approximately 17 percent of people with ASD also have OCD, with the same thought patterns and behaviors as someone diagnosed with OCD who is not on the spectrum. In contrast, only a little over one percent of the general population is diagnosed with OCD.” That is a pretty high number of people having autism with OCD. Yet, I have to wonder if the number of people having ASD with OCD may be much higher, maybe around 50 percent?? It happens so much that these disorders are comorbid to each other.
I run The Buddy Project, a small nonprofit in Frederick, MD that provides technology, training and advocacy for the intellectually and developmentally disabled. My work place is sometimes pure chaos. I do everything from managing accounting, development, marketing, and everyday tasks such as refurbishing computers as well as pick-ups of donated units. There are not many days lately that are very quiet. In doing all of these tasks, I have probably 10 thoughts of how I would like to improve on something, or have a new idea to create something. It is always hard to find the time and a way to implement new ideas. I have a hard time just getting it out in a clear explanation, and difficulty focusing on just one task. I also find it hard to deal with the messy space we have to work in. We always have computers “moving” around. We get new stuff delivered, or stuff is going out to new owners. It is quite hard for me to have things out of order.
I try not to let my OCD rule my life…or even my autistic rituals. I try to just ignore the symptoms and at times expose myself to things that make me uncomfortable. For the longest time, I would keep the ringer down on the phone because I never knew when it would “ring”. Now I try to keep it up more often, but I can see why people use the “vibrate” or “silent” functions often. I don’t feel so bad now. I don’t let any part of my disability take control of my life. I am in control.