Hi, I'm Giraffe :)

Hi everyone,

I'm a 32-year-old autistic woman, diagnosed last year. I've actually been meaning to join this community for ages but never got round to it, and now, with this second lockdown looming, I thought it might be a good idea to talk with people who live with autism and have been through the diagnostic process as well.

I won't bore you with the whole story, but essentially, I've suffered from an eating disorder since I was 13. Back then, I was hospitalised in a CAMHS psychiatric unit for eight months, and over the years have had different interventions, but to be honest it's been a very persistent problem for me since then; for years no one got to the root of the problem. I had and still have a lovely family; I seemed to have everything I could possibly want, but I was horrendously bullied at school and had no friends. I'd delve deeper into certain memories but they're just too painful. I felt like I was living in a world I didn't understand, and as I'm sure a lot of you will know, that really is so tough. I'm doing the best I've ever done at the moment, which is great, although with this new lockdown coming I wonder whether I'll be able to maintain eating well, because whenever there's stress, my way of coping is to restrict my calorie intake. It's second nature for me to do that and I fear it always will be, so it does worry me.

In 2018, I was hospitalised due to physical health issues caused by my eating disorder, and I was quite underweight; to be honest, my wife and my family and I were worried I was going to be sectioned and made to go into an eating disorders unit, but fortunately I met a great psychiatrist from the eating disorders service who came to assess me while I was in hospital, and she agreed to have me as a day patient rather than an inpatient, which I feel benefitted me a lot more. We also had a really good chat - a very emotional chat on my part! - and she mentioned autism, and talked to me about autism in women and girls; it was something she was really interested in and knowledgeable about, and she says as an eating disorders psychiatrist it's something she's seen a lot. My head was reeling after the conversation, and after I was discharged, I went away and researched, and realised that that was what had been wrong for years. My eating disorders psychiatrist referred me to our local autism diagnostic service, and I was diagnosed. It was an absolutely crazy day - there were so many tears; I cried after doing the puzzle, storytelling, book-reading, miming-brushing-your-teeth bit because I felt so embarrassed as a grown woman having to do all these weird little tasks, and I was choking up when they asked me questions like 'do you feel lonely?' (my wife was in with me because it's obviously good for them to have another person and another perspective, and I couldn't look at her, because I knew if I did, I'd cry) and then of course, I cried during the follow-up bit where we were given the diagnosis. I burst into tears right after the brilliant assessor called me 'as tough as they come', which was a bit ironic! Luckily my wife thought to bring about five packets of tissues! (She is so amazing; she's stuck by me through everything and I'm not the easiest person, so God knows how she does it!) I kind of knew there and then that this would be the start of a long grieving process for me, and it really has been.

Coming to terms with the connotations of the label has been really, really hard - much harder than I ever thought it would be. I get so much 'you don't look autistic' and the like, and it wears me down. When standing up to an offensive Twitter post re autism, I had someone come on and tell me I 'should be ashamed of myself, calling myself autistic' and that I was 'living a lie for attention' (I know I was stupid to get involved with a Twitter troll, but that hurt!) And sometimes, even though logically I know I shouldn't, I feel ashamed of being on the spectrum. It feels like there's a lot of stigma, and it feels like people rely on unflattering stereotypes to understand us. The most painful thing of all is that I feel quite a lot of resentment towards my parents, and I shouldn't because I love them to bits and I know they love me, but when I was thinking about getting diagnosed my mum said, 'I have always thought there was something wrong' and told me about when I was younger, and I find myself questioning, if she thought that, why didn't she push to get me supported? Could the last twenty years of suffering with my eating disorder and my mental health have been avoided if I'd been given the proper support in childhood? There's so much that schools offer children on the spectrum nowadays. I know that a lot has changed since I was a young child, but sometimes I even get resentful of that...why was I born when I was, and not more recently?

I guess I'd just like to know about other people's experiences, particularly those who were diagnosed in adulthood, although I'd honestly be very interested in hearing from anyone.

Thank you so much for listening to my ramble! x