Undiagnosed

A late diagnosis was the case for me when after years of trying to find an answer to why I was struggling in a world seemingly not designed for me, I was diagnosed with Autism Spectrum Disorder (ASD) at 17. Five years later I still believe this was one of the best things that could have happened to me.

In hindsight, as someone who now studies psychology and knows a lot about ASD and its different presentations, I could easily list the signs I exhibited; a delay in speech onset, difficulty socialising with my peers, interests that I knew an excessive amount about and would talk about to anyone with an inability to understand whether or not they wanted to hear what I was saying. My family and teachers saw these signs and often accommodated for my difficulties but none of this read as autism to them.

For years, acceptance of my autistic signs as “quirks” was enough, allowances by teachers for me to sit and read instead of socialising were made, my parents cut the tags out of my clothes without question, not needing to understand why they irritated me, enough to know that they did, and I attempted to mimic the social behaviours I saw even if I didn’t understand why they existed. But, as I later found out was common, at a certain age the demands of the world to act a certain way outstripped my ability to pretend. For me, this was high school.

Generally, I did not struggle with the academic work of high school, but I still found myself exhausted at the end of every day and dreading school to the point where my attendance dropped significantly. Teachers and support staff were all aware that I was struggling, outside mental health services were involved but no one could understand why this was happening. I did not have the language to articulate what was happening inside my head, I just knew I was different and – as far as I could tell – worse than everyone else. No one else I knew was feeling this way, that simply talking to anyone was exhausting because it felt like we were speaking different languages.

Lots of possible answers were presented but none fit to me, they didn’t explain this otherness I felt. Until autism.

One day, I spoke to a new member of staff, she typically worked with students with behavioural problems (of which I had none) but I explained this feeling, that sometimes when other people spoke to me it was like I knew all the words had meaning but they didn’t make sense, that when I said what I thought made sense I was stared at, and I said all of this without making eye contact, staring at the carpet, something I didn’t even notice I did because no one had ever mentioned the social rule to look at people. She paused after I explained all these feelings, and very slowly told me that everything I said was the same things the autistic students she worked with said. I knew very little about autism, I had met one autistic person before, a boy who seemed my opposite in lots of ways, loud and unafraid to speak or be in people’s personal space. Later I would learn that the internal vs external focus of behaviours is a difference in how autism presents based on gender.

She gave me a pack of information, told me to read it, ask my parents to read it, and that there was no pressure for this to be the right answer, just that it was a possibility. Once I’d read through that one envelope of information I was convinced. For the first time things made sense. All of these feelings and problems I was struggling had names, other people struggling with them and even strategies to overcome them.

Getting my diagnosis took a further year and assessments where some professionals dismissed me, but others went above and beyond to show that although my behaviour may not have fit what their idea of autism was, I was still autistic.

The further along in my educational career I got, the clearer it was that I needed accommodations to get the same out of the system that my neurotypical peers did. Indeed, the diagnosis process showed me that things I thought were a part of everyone’s lives were actually autistic traits and that I could ask for help even though I thought no one else was struggling in the same way I was. With the assessments being so slow and my a-levels approaching, support staff did what they could to help with accommodations although everything I needed couldn’t be given without an official diagnosis. Instead educational psychologists did tests of reading and processing time with me, getting written documentation of some of my deficits and allowing me to have some extra time in exams and a separate room to work in. Months later, when my diagnosis officially came through, those acommodations were almost automatically upped, even though I was the exact same student I had been asking for them originally.

My diagnosis gave me access to so much additional support, including at university.

Especially the community, which I have found invaluable; autistic students supporting fellow autistics, mentoring those younger than them or just showing how they’d handled situations (that don’t faze neurotypical students) for better or worse. In groups like that your unusual problems aren’t dismissed.

I worry though, what happens to those that do get missed by the system, that don’t present enough issues to get noticed, and don’t know enough about autism themselves to realise something is going on. It is so common to hear stories of (particularly) girls with autism having delayed diagnoses, and even getting misdiagnosed originally because unless someone is specialised or has experience in the area, it isn’t spotted. Autistic girls and women need to be seen and heard, and believed.

About the Author

Mollie Lee, is a 21 year old post-graduate psychology student at Lancaster University studying developmental disorders. She was diagnosed with Autism Spectrum Disorder at 17, when she was already interested in psychology and atypical development which she now get to pursue.

Learn more on Mollie's experience in our Succeeding with SEND: focus on Autism video