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 autistic 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 autism diagnoses 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 autistic women

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  autistic.

It is my experience that there is very limited post-diagnosis help for autistic adults in Wales (though anecdotally it seems we are a little 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.

The Squarepeg Podcast launched in October 2020. On 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 information and support for late diagnosed autistic 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 too often on parents of autistic children. But children grow into adults, and we don’t stop being autistic when we reach adulthood! Work needs to be done 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 an outdated 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, many 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 this is not a term I tend to use these days, as I don’t see autism as a disorder.

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 about 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. Being autistic 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 (they are actually pretty meaningless, and also ableist), 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 both belittles the struggles and difficulties of people diagnosed at the so-called ‘higher end’ of the spectrum, and also ignores the gifts and strengths of those perceived to be at the ‘lower end’.

The spectrum isn’t a line, it’s more like a circle, so to talk about ‘high’ and ‘low’ ends of the spectrum just makes no logical sense to me. There’s no such thing as ‘a little bit autistic’ or ‘very autistic’. There are autistic people who are non verbal (but who might also be highly intelligent and able to communicate very effectively in other ways), and there are autistic people who also have learning disabilities (but that doesn’t make them ‘more autistic’, it just means they have a learning disability).

Just because my autism is not obvious or problematic to you, that doesn’t mean it isn’t causing me difficulties! I may be able to work, make and keep friendships, pass exams and be married, but that doesn’t mean being autistic doesn’t have a profound impact on my day to day life. I have recently discovered the alternative term ‘high masking’, which seems to describe what I experience much better.

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 – so they’re really not very helpful in describing either our needs or our abilities.

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