Obsessively, compulsively: An Autistic experience of OCD

Written by Ginny Grant

CW: Anxiety, OCD, intrusive thoughts, violent images

I am standing at the kitchen sink scrubbing a saucepan when an image flashes into my mind: a long, gleaming knife blade. I scrub harder at debris at the pan’s edges, as I attempt to push the disturbing image out of my conscious mind.

Later that evening, I’m drying my child after her bath when yet another image disrupts my thoughts. This time it’s a picture of thick, deep-red blood pooled on the floor. I cram the vision to the furthest reaches of my mind, continue with the towel-drying and the bright, playful chatter.

For many years, these disjointed parts of violent scenes have disturbed my thoughts. Sometimes they appear months or even years apart. In times of heightened stress, however, they appear many times a day. There never seems to be a “trigger”, either; they simply emerge from my subconscious, mostly in very ordinary, benign contexts, such as while doing chores, walking along the street or driving.

When the flashing images occurred only sporadically, I didn’t dwell on them or even question what they were. Over time, though, I realised the images seemed to happen more frequently, and the more they did, the more it sank in that they were not likely to be something many other people experienced.

I decided it was best to keep the recurring disturbing images to myself. Despite being a softly spoken, gentle, caring person, I feared that others might draw the false conclusion that perhaps I harboured shocking, violent intentions to accompany these shocking, violent thoughts.

Seemingly more benign than the disturbing images were the numbers – that is, the numbers I was driven to: threes and fives and tens and combinations thereof. The numbers often represented the amount of times a task needed to be performed or checked before I could feel certain it was complete. I checked appliances and door locks again and again, to the point of switching an appliance on and off, or unlocking and relocking doors, to make sure they were left to my satisfaction. I feared that if I did not go through the checking/redoing ritual, I risked the house burning down in an electrical fire or a home invasion, and my anxiety could only ease once I’d been through the checking/redoing ritual the required number of times. But that alleviation of anxiety was short term. Because over time the rituals became more elaborate. Once satisfied that the appliance was off or the door locked, I would now also need to say “off” or “locked” aloud to myself – three or five times, of course – to add to the certainty that I had gone through the whole checking/redoing business, and as if that wasn’t enough I would even email myself for absolute written proof of the ritual having taken place.

I’m a logical person, and although I knew, deep down, that these rituals made little sense, it was nearly impossible to stop myself going through the process.

Like the disturbing images, the checking/redoing compulsions were easily obscured from others. If I had to go back to a room or return home to fulfil a checking compulsion, I would laugh it off as me being a bit “vague” or “preoccupied’ with other things. But it was no laughing matter. Eventually, the pesky numbers business ventured into a whole new and dangerous territory.

At the end of 2018, I began limiting and tracking my nutritional intake in a fitness app in an effort to lose weight. Almost immediately, the app became an obsession. All through the day, I found reasons to open the app and analyse the data within it: the number of calories I had consumed so far that day, the number of calories I had left to consume, the calorie and macro content of food I was considering eating, the calorie and macro content of food I was most certainly not considering eating, the energy expended. I opened that app many, many times a day, and each time I did I felt my anxiety lessen. As the weeks went by, my eyes increasingly slid over to the progress tab, which showed the kilos I’d shed, with an enticing graph depicting the sharp descent my body weight had taken.

Within just a few months, I found that numbers related to food and weight loss bounced around my head almost constantly, driving what had now become a serious eating disorder.

By mid 2019, I accepted there was an issue. I went to my trusted GP and confessed that numbers had taken over my whole existence. I admitted that my sole focus had become adhering to those numbers, watching that body weight graph continue its descent, making myself ever smaller. I told my GP about the checking rituals too, which seemed to have increased further as well. I didn’t think to mention the disturbing images. I was too unwell by then to organise my thoughts.

My GP told me straight up that this was obsessive-compulsive disorder, more commonly known as OCD, characterised by repetitive, unwanted thoughts and fears, and irrational, excessive impulses.

This was the real OCD – not the term that people throw about carelessly to refer to their exacting standards of hygiene or organisation, e.g., ‘I’m so OCD about cleaning!’ This very real OCD was something different altogether and had the potential to endanger my life.

The GP explained that OCD commonly underpinned eating disorders, and my weight-loss program was now firmly in the category of an Other Specified Feeding or Eating Disorder (OSFED, for short, although by that point ‘fed’ was an overstatement). She referred me to a psychologist who specialised in eating disorders and a psychiatrist.

I managed to get an appointment with the psychiatrist just a few days later. The psychiatrist confirmed the OCD diagnosis – even threw in a bonus Obsessive-Compulsive Personality Disorder, or OCPD, diagnosis, mentioning something about me needing order and perfection all the time. (Ahem … sounds quite reasonable, no?) He assured me that the OCD was treatable. He gave me an information sheet to take home with me, prescribed an antidepressant known to be effective in combatting OCD.

Following the appointment, I sat in my car, perusing the information sheet diligently. I learned that OCD affects only around 2 per cent of the general population. At the top of the list of OCD symptoms was ‘intrusive violent thoughts and images’. Bingo.

Back at home, I decided I needed to know more, so I took a research dive. I learned that OCD is known to be much more common amongst Autistic individuals, with one study indicating that up to 17 per cent of Autistic people may have OCD. Another study showed that Autistic individuals are twice as likely as non-autistic people to be diagnosed with OCD later in life, while those with OCD are four times as likely as non-autistic people to be later diagnosed as Autistic.

Over the following months, with the right medication and cognitive behavioural therapy, the OCD abated. The checking behaviours were the first to diminish. Then the calorie counting and weight-loss numbers. The violent images eased too but admittedly still re-emerge at times of heightened stress, each time a reminder to prioritise my wellbeing.

I recently told my psychiatrist that I felt I could finally think more clearly again, that my concentration had improved and I was feeling more productive in my work. He said of course; you can achieve so much more when your brain is not filled with ‘OCD chatter’. Ideal.

Looking back, I can recognise why, as an Autistic person, I was so vulnerable to this nasty anxiety disorder. Occasionally, though, I wonder about the accuracy of that OCPD diagnosis. I can’t help but query where my Autistic traits – including my need for order, symmetry, perfection – end, and the OCPD begins.

I have learned the price of ignoring my brain when it is sending strong signals that all is not well. I have learned my mental health must always come first.

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