Neurodiversity and Me: Helen's story

In my own time and space: A personal story from Helen at Cognassist

I don’t often think of my autism and bisexuality together because there was a gap of about 10 years between understanding both these things about myself.

I’m a naturally questioning person and I do love my research.

When I started to think I might be autistic, I went and read every blog and bought every book I could, hoping to see my own experiences in their pages.

But if you know autism and its infinite variations, you’ll already know this was a fool’s hope.

Sure, I got snippets.

I owe my diagnosis to the still growing conversation about autism in women and reading so many of their stories that I pieced together my experiences into a Frankenstein’s monster of all of them.

Maybe one day it won’t take so long for women like me to find the answers to why they feel different.

But I’d like for my research to be put to good use, and one of these books had an interesting perspective on these correlating identities:

“It should come as no surprise that when issues regarding sexual and gender identity come into the picture, the logical mind of an autistic woman can sometimes struggle to make sense of where she fits, who she is and who she might want to sleep with (if anyone). This sense of identity may not feel like it comes naturally and intuitively, and may have to be ‘worked out’.” (Women and Girls with Autism Spectrum Disorder, 2015)

I can definitely say my sense of identity did not come naturally, and I’m still on this journey.

The two years before my diagnosis were some of the worst in my life. I had more bad days than good, and my partner helplessly stood by me, witnessing my panic attacks, meltdowns and shutdowns, which I can’t even find the words to explain the raw despair of these.

But I am in a much better place post-diagnosis. In some ways I feel unrecognisable, and it has given me a level of self-compassion I didn’t have before.

During my diagnosis, the specialist who completed by ADOS said that she finds more autistic women want to fit in and often have a specific interest in areas like human psychology – I’m happily guilty of this – whereas autistic men have less of this desire to conform and will take to hobbies like taxidermy, which seems like a perfectly acceptable hobby to me!

But there are always exceptions to generalised statements like this one.

And I think it’s, therefore, important to acknowledge that autism and questions of sexuality or gender are not always intrinsic to one another.

However, I do see a broader link in terms of the language we use around our identity and community.

I came out as bisexual to my parents when I was at university.

I was very lucky to know that parents wouldn’t be fazed by such news, and they weren’t.

My mum responded, “I did wonder if you were exploring your feminine side.” Which is the most well-mannered British mum response I can think of – it still makes me giggle.

At this time, there wasn’t the same diversity in the terminology as there is now. There are now ongoing conversations and sometimes heated debate about the difference between pansexuality and bisexuality.

It has given me pause to think about the language I use.

For me, being bisexual and using this term are part of my life and who I am. I can’t see myself changing my mind.

I see bisexuality as being attracted to people the same gender as me and those of a different gender to myself (regardless of the gender) – this is not how everyone views bisexuality. For some people, it is only a binary, two-gendered term.

But what’s the connection with autism?

I was diagnosed with Autism Spectrum Condition in January 2023. Again, my parents were unfazed and supportive, although my mum felt a little guilty that she didn’t notice when I was younger.

I didn’t experience the same regret or anger that some people do when they receive a diagnosis later in life, for all the years of missed support or how things might have been different. And I don’t hold anything against my family because they did a lot to support me without realising I was autistic.

However, if I had been diagnosed before 2013, I likely would have been diagnosed as Asperger’s instead.

The term Asperger’s was retired with version 5 of the Diagnostic Statistical Manual (DSM-5) with input from the Autism Self-Advocacy Network (ASAN).

There has been much ongoing debate about the changes.

But these changes in terminology have also made a lot of people question their identity and the language they use to describe their neurological differences.

Some people still prefer to use the term Asperger’s or Aspie rather than autism because it’s part of their identity, and I recognise this feeling.

People are complicated. We relate to language in different ways.

The language we use to describe our neurodifferences is as varied as that of our other protected characteristics – LGBT has already grown to LGBTQIA+ in recognition of greater inclusion.

Regardless of the language we use to describe our experiences, it is our experiences that matter.

I feel like there is currently quite a lot of judgement about the terms people use or don’t use within the neurodiversity space and conversations, often coming from neurodifferent people and public speakers.

It feels like there are too many people dictating what language should be used, and it makes the space feel less welcoming, open to discussion and hearing multiple perspectives.

People should use the terminology that feels right to them, of course, but I don’t think it’s fair to expect others to feel the same way or say that there is a right or wrong way to talk about these areas – so long as you’re not attempting to hurt anyone.

Our experiences exist on broad spectrums, and no single definition or label will suit every person.

Who we are is a difficult enough question to answer without other people in the same community questioning you as well – so be considerate of the language people use to identify themselves because often they’ve thought long and hard about why they use it.

I’ll leave you with one of my favourite terms, the Te Reo (Māori language of New Zealand) word for autism, Takiwātanga.

It translates as ‘my own time and space’.

Whatever your journey towards understanding yourself and your personal characteristics, it can only happen in your own way, your own time and space. It’s certainly been that way for me.

I know how easy it is to compare yourself to others when you’re trying to learn how to be yourself, but ultimately, you’ll find yourself unlearning all these things the closer you get.

So take the time you need and best of luck, fellow wonderer.