What I remember most about being young was feeling confused and that everything was too much. Too bright, too noisy, being taken to places I wasn’t prepared for somehow, and having intense feelings that would unexpectedly colour my whole day and affect me deeply. People were confusing and I couldn’t work out how I was supposed to ‘be’ around others but there seemed to be unspoken rules. I didn’t know what I was supposed to say and do, how and when. I started school and spent a lot of time terrified about making a mistake and being told off. School exhausted me and I had to be picked up by my parents quite a few times midway through the day in the first years of primary school.
This was in the mid-1980s, and of course there was no real awareness of what autism in girls could look like, or even that there were autistic girls. Mum would say she knew there was something different about me but wasn’t sure what that was, but parents didn’t really talk to other parents about the difficult parts of parenting in those days, and I was her first child.
As I moved through school, I realised things were going to get a whole lot harder, and I didn’t want to grow up - it seemed to me that in adulthood you were really thrown to the wolves and on your own trying to figure it all out! That sense of growing independence was appealing to me, but I was worried how I could cope with no routines and no people to tell me what I should do. For me, being neurodivergent and knowing now how that impacts the way my brain works, I can see how that might make autistic people more susceptible to getting stuck on intrusive thoughts, which could then lead to mental health conditions, and in my case, OCD.
A few years into secondary school, I developed severe contamination OCD. There wasn’t one ‘reason’; it was a multitude of overwhelming experiences such as: social rules getting much more complicated as a teenager, finding a large and busy school hard to cope with, and feeling very isolated as I couldn’t explain what was happening, but it all felt scary. I did not have meaningful support from anyone, despite CAMHS being involved. I just had to keep pushing on despite feeling a lot of shame that I couldn’t seem to cope like everyone else, and OCD was a way for me to try to have some control and certainty in environments where I had none. School and anyone and anything associated with it became the contamination, and I could keep my life at school and at home separate so no one at school knew. The ‘contamination’ spread of course, like it always does, because ‘bad’ experiences are not something that happens solely at school, and there were other areas of my life that were overwhelming and a source of stress.
It is really interesting to me that there has been some research that traumatic experiences can be implicated in why some people develop ‘mental contamination’ OCD themes*. I haven’t looked at the research for this in detail yet but the term mental contamination describes themes of OCD where for example even thinking about a place or person or situation without having actual physical contact can make you feel contaminated and compel you to wash or clean or perform certain behaviours to try to relieve the anxiety caused by your thoughts. In addition, autistic people often have life experiences which they may experience as traumatic, and the associated thoughts and feelings can be ‘sticky’ where they may not be with a neurotypical person. You have the perfect recipe for OCD!
Being diagnosed autistic as an adult - prompted somewhat by my daughter’s diagnosis and learning that there is usually a genetic component to autism - has helped me to come to terms with the way I am and what I find difficult. I try to be kinder to myself and more aware of why I might feel overstimulated and overwhelmed for sensory or social reasons, without thinking I’m stupid and imagining my discomfort. I no longer need to force myself through situations that I don’t actually need to be in. That is very different to avoidance, which of course we try not to do with OCD.
My experience has been that autism and OCD have been intertwined over the years, although of course I have to emphasise that OCD is the mental illness and autism is simply the way my brain works and the way I am. For me personally, medication has been essential for my recovery as it allowed me to step back from intrusive thoughts and have the brain space to put into place the skills I have learned from Cognitive Behavioural Therapy, which is the evidence-based treatment for OCD. This is not a recommendation, and please bear in mind I am not a medical professional so can only speak from my personal experience, but I have also found that for me medication does significantly reduce the sensory overstimulation that I experience as an autistic person. This means that overall I can move through everyday life more easily and as a result I think this has had an impact on why OCD is not loud for me anymore.
*You may find the following resources helpful as they take a more in-depth look at mental contamination:
'It's the feeling inside my head': Understanding and managing mental contamination in OCD – an online presentation by Professor Roz Shafran and available for OCD UK members to view here: https://www.ocduk.org/conference/2024-conference-lobby/main-room/mental-contamination/
Mental contamination: 'It looks clean but it feels dirty' - Dr Victoria Bream's 2024 online conference presentation and available for OCD UK members to view here: https://www.ocduk.org/conference/2024-conference-lobby/main-room/mental-contamination/
