My story

A little bit about me

Hi! I’m Amy. I’m a business owner, a former high school teacher, a writer, a wife and a gay woman. I’m also autistic.

I was (finally!) diagnosed just before my 37th birthday. I live in Wales in the UK. I got my diagnosis of so-called ‘high functioning’ ASD (Autistic Spectrum Disorder) via the NHS in June 2016. (Don’t get me started on functioning labels, or calling autism a disorder…)

During my diagnosis process I started a (short lived!) blog called Project 39, about getting diagnosed with an autistic spectrum condition as an adult: the process and the ‘what now’.

What was Project 39?

Back in 2014 I found myself suffering with a very bad episode of depression, which lasted over a year (I know recognise that this was caused by autistic burnout, but I’d never heard of it at the time). I made the decision to reduce my work hours during this time to help me cope more easily with life’s demands. This effectively gave me 39 ‘extra’ days over the year (I had Tuesdays off from my job as a high school teacher) in which to try to figure out what I could do to re-imagine my working life and improve my mental health.

Positive outcomes

One of many positive things to come out of this time was finally feeling able to acknowledge that I was autistic, and to start talking about it. Another was that it started me off on my journey towards diagnosis – which happened in the summer of 2016, when I was 37. And since starting the Project 39 blog, two people I know have pursued their own diagnoses of Asperger’s as a result of reading it. This makes me very happy indeed, and I’m very grateful to them both for sharing this with me and including me in their journeys.

Support for women with autism

I hope you get something out of reading my posts, whether you’re on the same journey, love someone who is, or just want to learn more about what it’s like being on the autistic spectrum.

It is my experience that there is very limited post-diagnosis help for autistic adults in Wales (though anecdotally it seems we are better off here than in many other parts of the UK). This is something I am passionate about helping to change.

Something that has helped me hugely during and post-diagnosis has been Facebook groups and Instagram. I feel that my differences, frustrations and challenges are fully understood in these spaces. I think that having somewhere where we can talk about things that we might not feel comfortable saying to our NT (neurotypical) friends is a blessing. You can follow me @squarepeg.community.

 

Squarepeg

Project39 has now morphed into Squarepeg, which I’m hoping to build into a resource to help other autistic women navigate diagnosis, find their true selves again afterwards, and imagine and create lives in which they can be themselves, and not have to fit themselves into boxes shaped by society’s expectations. I’ve started with the Squarepeg Podcast, which launched Saturday 2 October 2020. In the podcast I interview autistic women – and also trans and nonbinary people – about their experiences of being autistic and how it impacts their lives.

 

Signposts to groups, support & further reading

I intend to build up my list of useful links and resources and hope to be able to provide signposts to services that offer help to so-called ‘high functioning’ and late diagnosed adults.

We are often overlooked as we appear not to need any help managing our lives. This is not the case, as shown by the comparatively high number of autistic adults who suffer with mental health problems such as depression and anxiety, compared with the general population.

Autistic adults often seem to be overlooked in the media and on social media, where the focus is all to often on parents with children on the spectrum. But children grow into adults, and our autism does not leave us with adulthood. We need to work to improve the services available to us.

 

A note on language

Autism/Asperger’s/ASD I always use the word ‘autistic’ these days, but when I first wrote my original blog I tended to refer to my diagnosis as ‘Asperger’s’, so you will find ‘Asperger’s’ in some of my earlier posts. I would now describe myself as autistic, and understand that Asperger’s is just another word for autism (and is no longer a separate diagnostic term in the US). I also understand that for various reasons, including disliking functioning labels, some autistic people don’t like to use the term ‘Asperger’s’ (I’m one of them!). I also sometimes used to use the term ‘ASD’ (Autism Spectrum Disorder), which is my official diagnosis, but not a term I tend to use these days.

Identity-first language I prefer to use the phrase ‘autistic people’, but when I first wrote my original blog I wasn’t as well educated in autism as I am now, so you may find the phrase ‘people with autism’ in some of my earlier posts. Autism is not a disease or illness, but a neurological difference, present from birth. My autism can sometimes be problematic, but it’s not an illness, and if it was taken away I would be a completely different person! Therefore autism is not something I ‘have’, but something I am.

‘High-functioning’ I do not believe functioning labels are useful (in fact, they are meaningless), so I try to avoid using the term ‘high-functioning’ (if I do, you will always see it written in inverted commas). I feel that this term belittles the struggles and difficulties of people diagnosed at the so-called ‘higher end’ of the spectrum (the spectrum isn’t a line, it’s more like a circle, so this just makes no sense! There’s no such thing as ‘a little autistic’). Just because my autism is not obvious or problematic to you, that doesn’t mean it isn’t causing me difficulties!

We may be able to work, make and keep friendships and pass exams, but that doesn’t mean our autism doesn’t have a profound impact on our day to day lives. Functioning labels also ignore the fact that the same person may be capable of functioning far better on one day or situation than the next! I have recently discovered the alternative term ‘high masking’, which seems to describe what I experience much better.