Before I turned 17 and started the gradual descent into becoming increasingly-suicidal, I suffered with severe obsessive compulsive disorder (OCD) that culminated in a breakdown. This was actually a blessing in disguise, which lead to both OCD treatment and the discovery that I was an autistic woman.
Not all autistic people will suffer with OCD, but it is a common co-occurring condition with neurological foundations and is compounded by trauma.
My experience with OCD was a dark one, and one I discuss far less regularly than being autistic– primarily because reliving those experiences is painful. I do not view OCD as a part of my identity but as an invading force that beat back my childhood.
That said, popular culture has created many misconceptions about what it means to have OCD, and I feel the need to clear a few things up.
1. OCD likely has a genetic susceptibility but is often triggered by stress or trauma
People are born with autism, but typically people are not born with full blown OCD. Situations of extreme stress and trauma tend to trigger OCD in children, teens, and adults. Once triggered, however, OCD rarely retreats without treatment.
When I was around six years old, my best friend in the world moved across the country. At this same point in my young life, I was sexually assaulted by a caretaker. I also switched schools for kindergarten. This combination of factors was unbearable for my young, autistic mind, and OCD began to present as part of my trauma response.
I actually began to receive therapy at seven because my first grade teacher noticed my unusual behavior. She figured out that I had likely been sexually abused though no one else believed it at the time. Ultimately, therapy was unable to treat my OCD without medication.
2. You aren’t “a little OCD” any more than you are “a little bit autistic.”
Just because you are neat and tidy and arrange things in a certain order does not mean that you have OCD. Please remember that true OCD is made up of both obsessions and compulsions and causes true pain and distress to those who experience it. It is not a description for people who simply tend to be rigid about routines or exacting in how they keep their space.
3. OCD is NOT behavioral
I can not stress this enough. The true experience of OCD is no more behavioral than autism is. True, we engage in bizarre looking compulsive behaviors, but we do so under duress to make the obsessions stop, and I guarantee you: you would, too, if you knew how it felt.
The truly crippling aspect of OCD is the obsessions. Intrusive thoughts that, unlike with schizophrenia, occur inside the head of the sufferer. The sufferer must then complete the appropriate action to make those thoughts go away. Imagine a hostage situation where the kidnapper lived inside your mind.
I will give an example frequently used in popular media: hand washing. I did frequently wash my hands until they were cracked and bloody. But, picture this:
You are going to wash your hands. A thought enters your mind that if you don’t wash your hands in a certain way three full times, they will be dirty and germy. You go to ignore the thought. You know it’s crazy, but it takes hold.
Your hands actually begin to tingle, and your mind begins to race. Your hands feel contaminated. What if you get sick because of this? Your mind cannot move on and pushes out all other thoughts. Your body starts to feel anxious. You know that if you just give in and wash your cracked bleeding hands three times, even if it stings, you can move on with your day.
This is why the compulsive behaviors get done. Unlike people suffering psychosis, people with OCD are as fully aware of how irrational these thoughts and actions are as you would be; however, they have to do the actions to make the thoughts stop.
If someone with OCD has to check that the door is locked or their hands are washed or that there is no killer hiding under the bed three times or thirty, they will do it. They have to, because until they do, they cannot go on with their day.
4. Stopping an OCD sufferer from engaging in compulsions is cruel and will not treat OCD.
My brother used to suffer from OCD as well, and my father would just go in and holler at him until the behavior stopped. I have seen many other well-meaning parents and loved ones simply sit with the person and stop the compulsive behaviors. These people may mean well, but this protocol will not treat OCD.
It is also rather cruel.
Keep in mind, the OCD sufferer knows how irrational and “crazy” both their obsessions and their behaviors are. Pointing it out and humiliating them won’t make the thoughts go away. If you force a halt to the behaviors, the thoughts become worse and grow in intensity. The thoughts can go on for hours without mitigation, torturing the sufferer.
And know this: if the obsessions were not even more crippling than the compulsions, you wouldn’t be seeing the behaviors in the first place. My therapists, who were not versed in OCD, used to ask me, “Why don’t you just stop?”
I would respond, “It won’t let me!” Note that even as a child, I knew intuitively that OCD was an “it” that liked to torture me. I knew that the thoughts were not my own, but I was powerless to stop them.
5. People with OCD often suffer with insomnia.
People with OCD are least distracted at bedtime and often suffer the most crippling obsession attacks at night. Many are up late into the night performing compulsive behaviors they know are absurd just because they need sleep. They wake up groggy and disoriented.
One thread of obsessive thought that haunted me was that I would find myself preoccupied with death. What if I died? What if I got hit by a bus? What if I had AIDS and didn’t know it? What if there is truly nothing after you die? I’d say rote prayers a certain number of times, check under my bed and in my closet a certain number of times, then blink at my clock to wait for the number to change on a lucky blink.
Keep in mind, I knew how irrational every action was but was desperate to quiet my mind. If I was lucky I’d pass out around 2 am.
6. People with OCD want it to be gone as badly as their loved ones do. If they could “just stop,” they would.
This is just one way in which having the mental illness of OCD is not like being autistic. Though some people would cure their autism if they could, many autistic people view their autism as a proud part of their identity. They view it as a difference and not a disability. I am one of those.
I am here to tell you that this is not the OCD experience. OCD invades a functioning mind and makes it suffer. This is how it feels to the person effected. I have never in all of my activist, professional, or personal experience met a person with OCD who is proud of it and wishes to keep it.
We may express fear or incredulity in there being life without it, but no one who lives this way enjoys it.
7. The right medication can weaken the obsessions. Then we have a fighting chance at stopping the compulsions.
Though I cannot say that medication has the ability to treat all OCD sufferers, it has been effective at helping many people. I was ready to end my own life since I was a prisoner to my own thoughts, and I credit medication for my OCD with saving my life.
But how does OCD medication work anyway? I couldn’t imagine it until I saw for myself.
The right OCD medication for a particular person will weaken the power of the obsessions. Mine did not entirely go away, but they were downgraded to the strength of regular annoying thoughts. If I worked hard at telling them to go away or thinking about something else, I could push them away without the compulsions. Gradually, they faded from my mind.
There are still exceptionally strong compulsions that I cannot shake, such as the fear of driving a car. And I am a “lifer.” I know that if I stop taking my medication I will fall victim to my OCD again. That said, medicated properly, I can live a mostly-normal life, and that feels like a miracle.
I will simply close by saying that if you have OCD, whether or not you are autistic, I urge you to seek treatment through medication and therapy. There is no shame in it, and most people can be treated in a few short weeks. It can afford a person a new lease on life.
Ignore people who say that needing medication is weakness. Anyone, who says that has no idea how to feels to be you.
- The Great Behavior Fallacy: Why The New York Times Is Wrong To Think That ABA Can Treat Autism — January 13, 2020
- A 2020 Resolution to Unmask and Live Unapologetically and Authentically — January 1, 2020
- On Autistic Facial Expression and Being A Woman — October 5, 2019