Co-occurring conditions

Many autistic people have co-occurring conditions which may have been recognised long before discovering they were autistic, leaving many people feeling like something was missing.

I believe co-occurring conditions delay the process for many in finding out they are autistic. Prior to my autistic diagnosis I had been living with fibromyalgia and chronic fatigue for 30 years. I was also living with, IBS, GAD, and social anxiety which I've had my whole life. I'd put a lot of my sensory and cognitive issues down to these conditions, so being autistic was never on the radar or on anyone else's either.

I even missed the warning signs of my B12 deficiency because I thought the irritability and extreme fatigue was due to my chronic fatigue and fibromyalgia. It wasn’t until I developed lesions on my tongue that I realised I was probably B12 deficient and got a blood test. The lines can get blurred of which symptoms ae coming from where given the overlap when we can have with co-occurring conditions. Autism shares symptoms with chronic illnesses, mental health conditions as well as ADHD, although some people who are autistic are also ADHD.

Many people are wrongly diagnosed with depressive and personality disorders, because the clinician was not able to see the red flags screaming autistic. This is also because many clinicians are trained better in these fields more than they are detecting autism, thus they can be clouded by what they think they know about a person’s presentation, or they may have a stereotype picture of what autism looks like.

I don’t think as autistic people we have OCD as a default. Although we could also have OCD as a co-occurring condition. I think this is where the difference is as OCD isn’t like repetitive behaviours in autism which to me is more about pattern recognition, thus the lining up of things and everything in it place. I organise bottles and things with labels on in the cupboard facing forward as it scrambles my brain in some way.

I do this so I can identity what these items are more easily so not to scramble my brain and create sensory overload. It’s the same with autistic people who repeatedly eat the same foods every day either. I eat the same food for breakfast lunch, dinner and snacks every day. My reasons are for simplicity and what’s works with my health issues around the foods I can eat, because of IBS.

It can get very confusing because when people have many co-occurring conditions along with being autistic, all their conditions may be trying to get centre stage making it very difficult to make sense of it all. It can also be exhausting because co-occurring conditions complicate things and can exacerbate or fuel other conditions. For these reasons the more self-awareness we have about our own behaviours, and why we think we are behaving in a certain way, gives a clinician a much better picture of what we are experiencing.

This is also why I believe self-diagnosis is important for adults during the discovery process before seeking a formal diagnosis if that is what their wishes are. This way they can go to an assessment presenting a clearer picture for the clinician diagnosing. I did this myself and spent a year researching, gathered information from what my family said about my childhood, and what I remembered and have observed in myself.

When it came to my assessment, I was well prepared, and it went smoothly. Of course, this is my story, and one size does not fit all, but all would benefit going better prepared rather than assume the clinician has it all sorted because clearly, we know this I not the case in many stories we here from other autistic people’s experience.