My Autism Story

my autism story p

If you’ve visited my blog before, chances are you’ve seen a post or two of mine about autism. With that said, it would be fair to say that this is nowhere near the first post I’ve written about my disability, although perhaps it should’ve been.

It didn’t occur to me until someone mentioned it that I hadn’t gone into much detail about how I got my autism diagnosis on my blog. I’ve spoken about aspects of it, but people always seem intrigued by the process leading up to it. I wrote a guest post about receiving a late diagnosis here, but that is still quite brief compared to where things really started.

In truth, I can’t remember a time when I wasn’t aware of autism. My older brother was diagnosed when I was young, and from then on, it seemed a natural part of life. That’s definitely an advantage in having disabled siblings because disabilities are never seen as ‘weird’ or ‘unusual’. However, he was the only influence I had at the time, so my thoughts about the condition were very much stereotypical.

Autism was first mentioned in relation to me when I was twelve years old, shortly after my mum had attended a Tony Atwood talk. There has been some controversy around the way he uses autistic people as the butt of jokes in recent months, but his expertise is something that should not be undermined. I recently watched one of his talks (you can view it here), and I definitely recommend it if you’re curious about yourself or a loved one.

Although I can now admit that those talks describe pre-pubescent me perfectly, I was at an age where I was prepared to do whatever it took to fit in. Puberty is the time where autistic people—especially girls—commonly fall behind their peers, and while this was definitely true for me, I was prepared to do anything to demonstrate that I wasn’t.

It was brought up again a few times after that, but the next time I remember acknowledging the possibility was when I was fourteen.

Without going into too much information, my mental health severely deteriorated from about the age of eleven. By fourteen, I was self-harming in various forms, and not in a great place.

I was watching YouTube videos at the time, when I looked to my suggested video and saw something about the correlation between self-harm and autistic females. I think it was then that I start to second-guess myself. Could I actually be autistic, even though I didn’t relate to what my brother experienced at all?

Much like when I was twelve, though, I disputed that this could be a possibility. I put it to the back of my mind and tried not to think about it, as I fell further and further behind my peers with no other explanation. I internalised a lot of it back then, thinking it was a problem I had to deal with. I was in and out of CAMHS (mental health services for young people in England), and convinced myself that I just wasn’t trying hard enough. If I really wanted to get better, to be like everyone else, then I would have to put more effort in.

It was only at sixteen, when I had been in a school for people with medical needs for two years because I could not deal with the pressures of mainstream education, that I started to believe autism was the answer. Or at least that it could be.

I didn’t go about it in the way most people at sixteen would have to go about it—through their GP. Instead, I had a meeting with the school, and my mum spoke to a community psychiatric nurse at the local mental health service I wasn’t engaging with. These two meetings combined led to me being put on the waiting list.

You hear horror stories of waiting lists taking forever, with a recent story suggesting certain places in London were going to reserve the diagnostic process for the ‘most severe cases’. I wrote about that a little in my blog post about whether getting a diagnosis is worth it, which you can read here.

When it comes to waiting list times, I acknowledge that I was extremely lucky.  The process from the waiting list to diagnosis only took me six months. A lot of factors go into where you sit on the waiting list. For me, I think the fact that I was about to go back into mainstream education with college emphasised the urgency of my diagnosis.

I received my official diagnosis on September 23rd 2015, three days after my seventeenth birthday.

It has been almost two years since the day of my diagnosis, and every day, I am thankful for the knowledge it has given me. I wrote a post a year after receiving my diagnosis on what had changed then, and I have continued to learn since.

I’m thinking about writing an update when my two year anniversary comes around, so if that’s something you’d be interested in, let me know in the comments below!


I hope this blog post has been an informative blog post. Please remember that I am just one person, and my journey to receiving an autism diagnosis will probably not reflect another’s. With that said, if you have any questions about any part of the diagnostic process, or autism in general, I am happy to answer them if you leave your questions below!

Thanks for reading, and until next time,

Goodbye

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25 Comments

  1. Trish

    09/07/2017 at 1:50 PM

    I just wanted to say thank you for the information you have provided about autism, particularly in females, in a lot of your posts. Although I will likely never receive a formal diagnosis, I suspect that it is part of me. It’s something that has been at the back of my mine a lot, and the more I read about how it manifests in women, particularly as teens and adults, the more sense it makes to me.

    1. RebekahG

      09/07/2017 at 6:59 PM

      Thank you!
      It’s perfectly okay if you don’t want to seek a formal diagnosis. If you’re happy with knowing it’s a part of you, then that’s perfectly fine. Women are disadvantaged in getting a diagnosis anywhere, but trying to as a teenager or adult? Even harder. A lot of people are self-diagnosed within the community through research, which it seems you have done.

  2. solange 🌻 (@solangesbloggin)

    09/07/2017 at 7:20 PM

    I think it’s very brave of you to share your story with the world – this post is helpful for anybody, people that might suffer from similar things like you, but it also raises awareness to people (like me) who don’t have much to do with autism in their everyday life. As for me, I learned a lot in this and I think you are highly admirable for the strength and courage you have! Keep it all up!

    much love, solange | creativepineapples.blogspot.com

    1. RebekahG

      12/07/2017 at 10:30 AM

      Thank you!
      That was always my plan when I first started talking about my disability on this blog, to raise awareness about my conditions and get rid of stereotypical ideas about my condition. I’m glad you were able to learn something!

  3. Corinne & Kirsty 🌸 (@corinnekirsty)

    09/07/2017 at 7:25 PM

    Thank you for sharing your experience with us. I am not familiar with the topic and know pretty much nothing so it’s always great to learn more. And also in case I meet someone that is diagnosed or might need to be. xx corinne

    1. RebekahG

      12/07/2017 at 10:34 AM

      Thank you. I’m glad you were able to learn something from this blog post. 🙂

  4. melissadawnlacey

    09/07/2017 at 7:31 PM

    Thank you so much for sharing your experience. I love that you’re using your blog as a platform to teach others about a topic not everyone knows a lot about.

    Love, Melissa x
    http://www.lovemelissax.co.uk/

    1. RebekahG

      12/07/2017 at 10:31 AM

      Thank you. It was never my original plan with this blog, but definitely something I’ve come to enjoy writing about on my blog.

  5. SaarBlogs

    09/07/2017 at 7:43 PM

    Wow, just… Wow. It seems almost impossible to believe how much you’ve gone through. I’ve come across quite a bit of “disorders” or health-related issues that have different diagnostics for males and females – I just didn’t know autism was one of them!

    1. RebekahG

      12/07/2017 at 10:32 AM

      Thank you!
      I don’t think a lot of people outside of the autism community really understand the differences between gender when it comes to diagnosis, either, but it’s crazy how much more difficult it was for me to receive a diagnosis than my brother. It’s something a lot of people are trying to raise awareness of, and I know there has been pressure put upon the assessment processes to see & diagnose more girls, so things should hopefully start to change soon.

  6. abbeylouisarose

    09/07/2017 at 7:48 PM

    Thank you for sharing this massively informative blog post, Rebekah! I must admit that I knew very little about the process of autism diagnosis prior to reading this post, but you’ve communicated your experience incredibly well! Your openness and honesty is truly admirable and I have a lot of respect for you for sharing this post – awareness is so very important!

    Abbey 🌻 http://www.abbeylouisarose.co.uk

    1. RebekahG

      12/07/2017 at 10:40 AM

      Thank you, Abbey. I’m glad you were able to learn something about the diagnosis process from this blog post! 🙂

  7. Claire

    10/07/2017 at 4:47 PM

    Firstly, you are such a beautiful writer – your words flow so nicely onto one another! I think that its amazing that you are talking about autism and your experience with it because so many people naturally think that autism is diagnosed when you are a child but, as shown in your case, that isn’t always true. It obviously hasn’t stopped you and I think that is amazing! I would love to read about your update on your 2 year anniversary and what you have achieved while knowing you had autism x
    Claire | clairesyear

    1. RebekahG

      12/07/2017 at 10:43 AM

      Thank you so much for the compliment, Claire! As someone who hopes to be a writer someday, that’s the best compliment ever, haha.
      Yeah, child-only diagnosis’ are one of the biggest misconceptions. Increasingly, girls are often diagnosed as teenagers or adulthood. A lot of people think this means we’re ‘less autistic’, even though that isn’t the case. There’s a lot more to the difference in genders than people seem to think when it comes to this condition.
      Thank you. I think I’m definitely going to go ahead with that blog post when the time comes. 🙂

  8. Natasha Botkin

    10/07/2017 at 8:13 PM

    Thank you for sharing your journey. I have two sons with ASD and also have traversed the course of emotional disturbances that others just do not understand. Much luck to you!! xoxo

  9. Thoroughly Modern Emily

    13/07/2017 at 5:08 PM

    Thank goodness you didn’t have to wait too long to get your diagnosis. I’m afraid I’m not too familiar with the health system in the U.K. (apart from knowing you have a single-payer system), but here, the diagnosis can really open doors to treatment and support services. Thank you for sharing your story ❤️

    xx
    Emily
    emilyhallock.blogspot.com

    1. RebekahG

      15/07/2017 at 2:58 PM

      Yeah! It’s definitely not the norm, that’s for sure, so I was super lucky. Unfortunately there aren’t many support services for autistic people in the UK at the moment as a lot of the push is on getting people the diagnosis they need, but hopefully things will improve sooner rather than later!

  10. Evelina

    13/07/2017 at 5:37 PM

    Wow, this is very interesting. I will definitely read your post about how you got diagnosed as well.

    1. RebekahG

      15/07/2017 at 2:58 PM

      Thank you! I’m glad you found it interesting.

  11. Sarabi

    13/07/2017 at 7:02 PM

    It’s so interesting how you write about denying the possibility of autism and that those around you didn’t catch it either. I feel like I was in the same boat. I spent ages ~11-21 (I’m almost 22 now) in a terrible mental state but without receiving help. like you, I pretty much convinced myself that I wasn’t trying hard enough. Only when I reached dire straits right after my 21st day did I finally go to seek help, and then I received diagnosis and treatment.

    1. RebekahG

      15/07/2017 at 2:59 PM

      I think it’s a really common thing in people who don’t receive a diagnosis at a young age–I’ve heard it is, anyway. I think when you’ve spent so long observing other people, when you start noticing the difficulties you’re having to fit in, it’s hard to admit there’s something not quite right. I’m glad you were able to receive a diagnosis. It sucks that you had to get into a bad headspace to receive that help though.

  12. Kayleigh Zara

    04/08/2017 at 7:12 PM

    Thankyou for sharing your story and your diagnosis, I have to say I don’t know many people with the same diagnosis so it’s great to get to know more x

    Kayleigh Zara 🌿www.kayleighzaraa.com

  13. A Cup of Wonderland

    05/08/2017 at 5:48 PM

    Thank you for sharing your story. I loved your honesty within this post. Thank you

    1. RebekahG

      07/08/2017 at 8:31 AM

      Thank you for reading. In cases like this, I think honesty really is the best policy. I’m glad you liked that aspect!

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