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Autism and OCD: My Journey from Self-Hating Perfectionist to Autistic OCD Advocate

Mar 08, 20228 minute read

This article uses identity-first language (“autistic person”) over the more common person-first language (“person with autism”), in accordance with the preferences of the autistic community.

One of my earliest memories involves coloring a picture of Ariel from the movie The Little Mermaid. For the first time ever, I used non-movie-accurate colors, making her blonde with a blue tail. When I finished, she looked beautiful—and I cried for an hour, because it felt wrong.

For my whole life, my OCD has latched onto perfectionism, symmetry, and things feeling “just right.” I’ve experienced other OCD subtypes, but perfectionism worms its way into those as well. And it’s not just about doing things perfectly: it’s about being perfect. 

When being “perfect” means “not being you”

I spent most of school hating myself for being a weird, messy chatterbox with no friends. Every week, I’d tell myself that come Monday morning, I’d start being perfect. That meant being everything I was not: neat, quiet, conscientious, and ingratiating. I always started on Monday morning, because that was the “right” time to do it. Of course, my attempts at being an entirely different person never lasted long. My real personality would reassert itself, and I’d beat myself up for it all week, until Monday came and the cycle started over again. 

It’s not surprising that my OCD focused so much on seeking approval and meeting unrealistic expectations. As a gifted child, the expectations placed on me were so terrifyingly high that imperfection never felt like an option. On top of that, I was diagnosed as autistic when I was 7. Unfortunately, the main “treatment” for autistic children to this day consists of punishing them for being their natural autistic selves, while rewarding them for masking (pretending to be neurotypical at the expense of their mental health). 

I grew up being forcibly taught that being myself was bad, so it makes sense that my OCD revolved around trying to be perfect, and that my idea of being perfect equaled being anybody but me.  It didn’t help that nobody told me I was autistic, leaving me to conclude for much of my life that I was just somehow inherently wrong. (I found out when I was 31.)

And so I grew up having compulsions rewarded, like my “start being perfect” game, because they helped me pretend to be the person everyone wanted me to be. But being praised (or avoiding punishment) for this only made my OCD worse. I started picturing imaginary people watching and judging me 24/7, and I obsessively tried to act in ways I thought would gain their approval. After a while, I couldn’t switch them off, and the pressure to be perfect was constant, even when I was alone. 

OCD holding me back at every turn

OCD slowly corrupted every part of my life. I developed themes of moral scrupulosity, magical thinking, and real event OCD—all of which were new ways for my OCD to insist on perfection. Life offers a billion possibilities, but OCD always reduced them to all or nothing. If you’re not morally perfect, you’re worthless. If you don’t wish on a star at the perfect moment, you’re going to die alone. If you don’t hyper-analyze your past actions for missteps, your whole life will be a mistake.

By the time I reached adulthood, OCD was shrinking my world in earnest. Thanks to compulsions, things that took other people an hour or two took me weeks, if I could do them at all. It got to the point where I was handing in assignments to my college TAs on the day they had to hand in their marks to the school. Thanks to OCD, I  only (barely) completed two of the five degrees I attempted, and I quit every job I ever had because I was too anxious to function. 

My life was always on the verge of falling apart. I wanted to be a writer, but OCD convinced me it was better not to write at all than risk writing something flawed. I always had big dreams, but I never made any of them a reality because I was terrified they wouldn’t be good enough. OCD gobbled up my time and energy. It cost me countless opportunities to do what I loved. It made me hate myself for not living up to my potential—but I kept giving in to it, because that was the only way I knew how to be.

Ten years between diagnosis and treatment

A therapist first suggested I had OCD when I was 25, but he never told me what that meant. I saw another therapist for 7 years, and while he confirmed I had OCD, he never attempted to treat it or refer me to someone who could. I spent that decade desperately slipping from moderate OCD to extremely severe. 

Years of inappropriate talk therapy only made matters worse. Perfectionism and “just right’ compulsions were now taking up most, if not all, of my day. On top of that, my OCD had found a new target in the form of anxiety about my health. I’d been struggling with physical problems for years and spent five years housebound with chronic illness. By this time I was 35, and I thought I’d never get better. My OCD was eager to agree.

When Covid hit, contamination fears finally convinced me to seek specialized OCD treatment. I’d downloaded the NOCD app a year before and loved it, so I decided to sign up for their ERP therapy as well. I knew it would help, but I had no idea how much. 

My first session felt like having my internal world come into focus for the first time in my life. Armed with my new understanding of OCD, I started doing exposures. At first, I was making great progress. I was learning to sit with uncertainty, and I was confronting my fear of imperfection by practicing making mistakes: typos on social media, bad choices on my video game. It was early into treatment, but I was brimming with hope.

Hitting rock bottom, then finding the road out of it

A few weeks into ERP, my chronic illness worsened severely, and I was forced to leave the NOCD program early. What followed was eight months of unspeakable bedbound suffering: unable to communicate, tolerate any light or sound, or sometimes even swallow. The specialists said I needed spinal surgery, but before I could get it, a sudden ER trip acted as an extreme inadvertent exposure which saw most of my physical symptoms vanish overnight. It was a mind-boggling miracle. The only explanation that made any sense was that my physical illness had been part psychosomatic, with OCD mimicking the symptoms I feared so convincingly that even the experts thought they were “real.”

It’s been almost a year since then. I still have a chronic illness, but I’m nowhere near as sick as before. I’ve spent the whole year in OCD therapy, some in PHPs/IOPs (partial hospitalization program/intensive outpatient) and some with NOCD. 

It was scary coming back to NOCD hoping to pick up where I left off and finding out that I now needed a higher level of care. But NOCD was there for me through that whole process, even when I wasn’t actively in their program. They’ve been a home base for me throughout my healing, both via the therapy program and the support groups offered through NOCD Therapy. They’ve supported me through getting my life back, and now that I’m in recovery, working out what I want to do with that life. I cannot imagine having made this journey without them.

A chance to help other autistic people with OCD

I didn’t start ERP expecting to become an Autistic/OCD advocate at the end of it. But as I went through treatment, I found there was almost nothing out there for autistic people with OCD like me. Even though an estimated 17% of autistic people have OCD, there’s very little research on the intersection, no specialized services, and not even Facebook groups for support. 

I felt very alone, and this only added to my anxiety around treatment: Was ERP effective for autistic people? Would OCD therapists understand my autism enough to help me? Would they attempt to use harmful autism treatments on me?  And given the overlaps, how was I even meant to tell what was my autism and what was because of OCD? 

Of course, most of these fears were also caused by OCD. But as I sat with them, I realized I couldn’t possibly be alone. There were lots of people out there struggling with these questions, I just didn’t know where to find them. So I reached out to NOCD and suggested they start an Autism/OCD support group, and then—something my OCD would never have let me do before last year—I volunteered to help facilitate it. 

To my utter delight and terror, NOCD took me up on my offer. That group has been running for a few months now, and I adore it. It’s free to all NOCD Therapy members, and it’s my hope that it can be the start of a new wave of services for autistic people with OCD. I’ve always felt I had to become a different, “perfect” person to be able to help others. OCD recovery has shown me there are ways to help that are only possible if I am imperfectly, authentically myself, and I’m incredibly grateful to NOCD for the opportunity to use my lived experience to contribute to change.

I spent my whole life using compulsions to try to be someone else. Now I lean joyfully into being my true autistic self, even in the face of stigma, because risking being myself is a billion times better than letting OCD and society tell me who it’s okay for me to be. And while I don’t celebrate my OCD in the same way I celebrate my autism, knowing and accepting that it’s a part of me has been liberating, because it’s given me the tools to live a good life in spite of it. It would have been nice if the path to get here was less painful, but if this is where I ended up, I’m glad. Because I’m finally living my own life. And I don’t have to be perfect to do that.

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