Since my autism diagnosis, I’ve been slowly unmasking and understanding myself better. It’s helped me make sense of so many things that I’ve struggled with all my life. At the same time, it’s also made me realise there are other things going on that I don’t fully understand.
One of those is something that professionals have suggested could be OCD.
The problem is… I’m terrified of getting assessed.
It’s not because I don’t want answers. I do. But I’m scared I’ll explain myself badly, that I won’t be believed, or that I’ll be told I’m overthinking everything. I spent so many years masking and convincing myself I was just “being silly” that it’s difficult to trust my own experiences sometimes.
My mind gets stuck on things. I can spend hours worrying that I’ve done something wrong, left something switched on, misunderstood a conversation, offended someone, forgotten to put my handbrake on, or made a mistake at work. Even when someone reassures me, the doubt often comes back. I constantly seek reassurance from the people around me because I struggle to trust my own judgement, but even that reassurance is often only temporary before the doubts return. It’s exhausting.
I’m also constantly worrying about my dog. If I forget to turn off a plug, I instantly think it’s going to start a fire and hurt Luna. If I don’t see her eat, I worry she’ll starve. If I can’t hear her breathing, I’ll often check that she’s okay. The list goes on and on.
The intrusive thoughts, the need to check things, and the constant reassurance-seeking don’t feel like ordinary anxiety anymore. They often become impossible to switch off, which is why I’ve started wondering whether there’s something more going on.
Change is another thing I really struggle with. I rely on routine, structure and knowing what’s going to happen. If plans suddenly change or something unexpected happens, it can completely throw me. Over the years I’ve worked really hard to adapt because I know life isn’t always predictable. I make detailed plans, think through different scenarios, use reminders, ask for clarification, and create routines that help me function. From the outside it probably looks like I’m coping well, but people don’t always see how much effort goes into keeping myself regulated.
There have been times when everything has become too much.
I was once sent home from work because I became so overwhelmed that I couldn’t continue in my role. I was feeling completely overloaded and unable to regulate myself. I got to my car and had to wait for 30 minutes before I felt safe enough to drive the 10 minutes home. Even then, I needed my partner to stay on the phone with me to help me stay focused so I could get home safely.
Another experience I’ll never forget was at an emergency dental appointment. I became so overwhelmed that I was crying and shaking. During everything that was happening, I bit the dentist. It wasn’t intentional or aggressive—it was a panic response because my nervous system had completely gone into overload. I still feel guilty about it now, but it also showed me just how intensely my body reacts when I become overwhelmed.
I think one of the hardest things is that people often judge you by what they can see. They see that I work, I drive, and I go to choir, and they assume I’m doing fine. They don’t see the amount of planning, preparation, reassurance, recovery time, and sheer mental energy it takes to do those things.
There are so many other things people don’t see too. I struggle with competing noises, chewing sounds, and crowds. I’ll often agree to plans with friends, only to cancel at the last minute because everything feels too overwhelming. I can’t even sleep in the same bed as my partner because the slightest brush of an arm can wake me up, leaving me feeling overwhelmed and irritable. (I’m a catch, I know! 
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Sometimes I still wonder if I’m making a fuss over nothing, even though these struggles affect my life every single day. I think that’s one of the reasons seeking another assessment feels so frightening.
Has anyone else felt scared to pursue an OCD assessment after already being diagnosed as autistic? I’d really like to hear other people’s experiences because, at the moment, I feel quite alone with it.
