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Jodie's story


Jodie Hare has kindly agreed to share her story with us. Jodie is a queer, autistic writer. With a background in modern languages she now writes about feminism, autism, and jellyfish. She is currently writing a book about autism and neurodiversity for Verso.

At the end of this article, there are links to more of Jodie's writing, and a link to share your own content if you'd like to get involved too.

Thank you, Jodie, for answering some questions about your story :)


 

How did you find out you are autistic?

After cycling through various mental health diagnoses that I felt weren’t 100% correct, I read an article written by a woman who had been misdiagnosed with a similar issue before realising that she was in fact autistic. Her story resonated with me so much that I did some research and spoke to my doctor about it. I was referred for an initial assessment at a local autism charity at 21, and then spent 2 years on the NHS waiting list before I received my official diagnosis at 23.


How did you feel about it at the time, and has that changed since?

At the time I just felt relieved to find other people who had experienced things that I felt ashamed about. I had felt so isolated for so long that I was happy to put a name and an understanding to something that had been gnawing at me. It felt like uncovering another part of myself. After I was first diagnosed, I did experience a strong sense of grief, about what my life might have looked like had I known earlier and been able to communicate the issues I was having — but I understand that because of the lack of support and understanding around autism, I might not have had a better time knowing earlier anyway. That grief has lessened now.


What is one thing you wish you could tell your pre-diagnosis self?

That I’m not broken. That there is joy to be found in unexpected places.


Do you have any special interests? What are they?

Literature. Sea creatures, but particularly jellyfish. Poetry, but particularly that of Mary Oliver. Feminist and queer theory. Learning languages. Plays. Sor Juana Inés de la Cruz. Sitcoms like The Office.


What tips and tricks for managing your brain can you not do without?

For socialising and communicating

Spending time thinking about what I want to say or communicate if it’s important. If I’m worried about socialising, then it helps to pick some topics to discuss in advance that I can use if I feel stuck. Knowing when I’ve had enough socialising is a big one for me and knowing how to take care of myself when I feel like I’ve pushed myself too far. Socialising is hardest for me in group settings, so if someone I trust is going to be there then I try to let them know I’m nervous.

For routines

If I think my routine might impact someone else then I try to let them know or tell them that they don’t have to do things my way — my family know that I like to leave for the train station exactly 20 minutes early, and if they’re not ready yet then I’ll walk there alone, and they can meet me when they’re ready. Most of my routines are things I do in private, so if I can’t do them because of changed plans etc then I try to be kind to myself if I feel annoyed or upset by that.

For handling change

I don’t think I’m great at handling change. Depending on the change it can make me quite stressed. Expressing this by journaling about how frustrated I feel can be helpful. Therapy has helped me with some of the biggest changes I’ve faced and that’s been important and valuable to me. Radical acceptance which is a skill from Dialectical Behavioural Therapy has also helped me in this regard. The older I get the more I understand how much change is present in everyday life and I try to remind myself that change doesn’t have to mean the end of the world, but I do struggle with wanting control over things, so it’s something I still have to work on.

For sensory issues

Noise is probably my biggest sensory issue. When I’ve had enough, I like to go and be alone for a while and that helps. Spending the evening alone in my bedroom gives me the time and space to recharge from being overwhelmed. I carry headphones and earplugs everywhere with me. I work from home most of the time because the noise of the office can be overwhelming. I only buy clothes in materials I like. I have sensory things I know I enjoy and seeking out those when I feel overwhelmed helps. If I have to be in a sensory environment I don’t really like, then I try to plan in advance to have time alone before/after and I try to take breaks when I need them.


Here are links to Jodie's socials and other articles she has written about autism

 

I hope to include more of these types of articles on the website, to share more people's perspectives. If you've got a story to share or want to contribute other things you've written, let me know via this form.

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