My Autism Diagnosis: Two Years On

My autism diagnosis pinterest

September 23rd 2017 marks two years since I received my official autism diagnosis, and my life changed completely. This may seem like a small event for some people, but it’s one of the most important dates of the year for me.

In the first year following my autism diagnosis, I focused a lot on learning about autism and how it related to me. I learnt coping mechanisms from other autistic people, and spoke to them about their experiences. If you want to know more about that part of my life, why not check out my first year review here?

The first year after my diagnosis was about learning what it meant, whereas the second year focused largely on accepting it. (Click to tweet) 

It’s been in this last year I’ve realised I need to accept that autism will always have an impact on my life. That doesn’t mean I’m giving up on myself or my dreams, but I’ve definitely made them more realistic and autism friendly now. In the past, I hadn’t had to think about limitations so much. I assumed that I would lose the difficulties I had when my mental health improved. However, this diagnosis taught me that that wasn’t going to be the case.

I’ve just turned nineteen, too, which means a lot of my time is spent worrying about and planning my future. The transition into adulthood is hard for many autistic people, which is really reassuring when you worry you’re alone in the way you feel.

Sometimes, though, I can’t help but feel like I’ve been left behind. I often compare myself to being a nineteen-year-old living in a twelve-year-old’s body. I’m friends with people who’re almost two years younger than me and do a lot more than I do. They have jobs, serious relationships and drive, or are learning to do so. I celebrate when I manage to eat a new food, or talk to a professional without the support of a parent.

Although worrying has always been a massive part of my life, and will continue to be, my diagnosis has continued to be a positive thing, too. I’ve learnt more about the things I struggle with and have been able to adapt situations so I’m more comfortable. I now carry a tangle around with me to help me focus or stimulate me when I’m under-stimulated. I’ve also been researching earplugs designed to filter out background noise to help me cope for longer in noisy environments.

I think a lot of the worries I’ve had this year are autism-specific, as opposed to being late diagnosis specific as they were in the first year. A lot of the things I struggle with have been things I would have worried about had I been diagnosed at any age. There’s something comforting in that.

The second year of living with my diagnosis has also provided me with opportunities I never thought I’d have. One of my proudest achievements is featuring in two research studies about autistic people and their lives. One of the reasons I started writing about autism on my blog was to educate others, so it’s nice to know I’m doing that. These research studies are also crucial for improvement in the way autistic people are treated in a medical and social sense, so I’m proud that I could have had a small impact on the outcome of them.

Through blogging, I’ve also had opportunities to share my story with other people’s audiences. I’ve written about my late diagnosis on a fellow Autistic blogger’s site, as well as answering questions on two separate blogs that I would not have had access to before.

Overall, I think my autism diagnosis is a positive thing. There’s every chance this could change when I go out into the world of employment and have to fight discrimination, but I hope I don’t lose my love for such an important part of my identity.

Of course, there are days when I may struggle with certain parts of being autistic, where the anxiety gets so much I wish I could do things others could. I compare myself to neurotypical people far too much, and often forget about the things I can do that they can’t. Who says getting involved in a TV show and watching it obsessively for eighteen hours is a bad thing?

But this is who I am, and no amount of wishing my disability away is going to change that (click to tweet). I’ve given up. This is who I am, and take me or leave me, I’m not changing for anyone.

Thanks for reading, and until next time,

Goodbye

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32 Comments

  1. Jasmin N

    23/09/2017 at 9:15 PM

    It was lovely to read your story and see how open you’re about this. I wish you all the best for the future 🙂

    1. RebekahG

      24/09/2017 at 8:02 PM

      Thank you! Being as open as I am about my disability wasn’t something that came straight away, but I’m really glad I’m able to share my experiences like I am now.

  2. Justine Spencer

    24/09/2017 at 2:31 AM

    Being diagnosed with any condition can be a confronting and reassuring experience. A few years back I was diagnosed with several endocrine disorders, and while their diagnosis highlighted more obstacles and challenges I would face, it also gave me a reason as to why I’d struggled physically and mentally for so long. I also was diagnosed with these conditions at a similar time to you, on the bring of adulthood, and as a result it’s had quite an affect of who I’ve grown to be. Thanks for sharing your experience Rebekah, it was wonderful to read :),

    1. RebekahG

      25/09/2017 at 11:13 PM

      That’s a really positive way to look at your diagnosis’! I think the fact I was diagnosed just before I entered adulthood had such a massive effect on the way I handled it. On the one hand, I did better than I would have had I been given the news a few years earlier, but I did feel angry for a little while because I didn’t know sooner! I’m glad you enjoyed this post.

  3. Tavia

    24/09/2017 at 5:04 PM

    Thank you for being so open and honest. I can’t imagine standing in your shoes, but you are obviously a strong woman who is not letting this diagnosis get her down. Keep your chin up!

    1. RebekahG

      25/09/2017 at 11:14 PM

      Aw, thank you. At the end of the day, I can let this diagnosis take over and ruin my life, or I can learn to live with it the best that I can. I think this post (and others here on my blog) have highlighted which route I decided on in the end! 😉

  4. pinkiebag

    24/09/2017 at 7:35 PM

    Hi, thanks for sharing this open and honest post, im gald you see your diagnosis I in a positive light and hope that you dont come across any discrimination with regards to future employment.

    1. RebekahG

      25/09/2017 at 11:15 PM

      Thank you! I hope so too. I’m trying to be realistic about it, but it’s definitely something I’m struggling to get to grips with at the moment.

  5. Corinne and Kirsty

    24/09/2017 at 7:44 PM

    I think that you write about it is already amazing! It means you’ve accepted it already and probably since a long time ago. Don’t change who you are otherwise you’re not you anymore. I am sure you’ll be doing amazing! xx corinne

    1. RebekahG

      25/09/2017 at 11:16 PM

      Thank you! It’s definitely something that’s taken a while to accept but for the most part, I feel positively about it now. That’s really nice of you to say, thank you!

  6. abbeylouisarose

    24/09/2017 at 7:47 PM

    I think you’re absolutely right about your diagnosis being a positive thing! Having done all of the research in your first year of diagnosis, you can now feel confident in making plans that fit within your comfort zone! Good on you for remaining so positive and for getting involved in the research studies as well, it’s brilliant that you’re being a pioneering change in helping people understand more about autism! Fantastic post as always!

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

    1. RebekahG

      25/09/2017 at 11:17 PM

      Aw, thank you so much! Yeah, that’s definitely a bonus of having a couple of years to adjust to the diagnosis. It wasn’t the best situation in which I got my diagnosis, but I’m glad I was still in education and my parents were understanding enough to not push me into things before I was ready. Thank you! That’s definitely one of my proudest achievement.

  7. Ashleigh Taylor

    24/09/2017 at 7:54 PM

    Diagnosis is definitely a positive thing, it helps you to learn more about yourself and what helps you to cope with certain things! X

    Ashleigh | http://ashleighwrites.co.uk

    1. RebekahG

      25/09/2017 at 11:18 PM

      Yeah, that’s definitely a statement I can agree with! It changes everything, but not necessarily in a bad way.

  8. rspires811

    24/09/2017 at 8:07 PM

    I am glad that you are becoming more comfortable with your diagnosis. The more comfortable you become the less likely you will allow any negativity to effect you. You now have voice that will help people to have more comparison and a better understanding about what those with autism are going threw. Thank you for sharing such a great post.

    1. RebekahG

      30/09/2017 at 5:09 PM

      Aw, thank you for such a lovely comment! That’s something I’ve definitely found–as more time goes on, I’m more confident and therefore more able to challenge those who think my diagnosis is a bad thing. It comes with it’s challenges, sure, but there are things I do now that I would never have done without a diagnosis.

  9. Bronia McGregor

    24/09/2017 at 8:08 PM

    I think your attitude about your diagnosis being a good thing is definitely the right way to look at it. It’s so good that you’re getting involved with research studies and writing about your experience, one of my friends told me that it’s much harder for women to get autism diagnosed because so much of the previous research focused on male behaviour so everything you’re doing will definitely help to change that! And of course you’ll also be helping to educate more people about it!

    1. RebekahG

      30/09/2017 at 5:11 PM

      Aw, thank you!
      It’s definitely harder for females to get diagnosed because of what you said, even harder again for POC and transgender people, because of the research was on white cis boys. Thankfully research studies aimed at diverse groups of people are helping to change that, which I’m hoping will help change stereotypes in the future!

  10. TheCrimsonCardigan

    24/09/2017 at 8:13 PM

    I very much admire your positivity and acceptance of your autism. I think it’s so beautiful and so important. My two boys ( ages 4 and 13) are autistic, and I’m so adamant that they learn to grow up to take care of themselves and survive on their own, just in case we aren’t around for them later. Things happen, and it’s always something I worry about. However, reading your story, I have hope that it is in fact possible. So thank you.

    Ashlynn | http://thecrimsoncardigan.com

    1. RebekahG

      30/09/2017 at 5:14 PM

      Thank you! I’m sure you know the challenges of autism well, but it sounds like you’re really working with your children to make sure they can make the most out of their lives. There are still things that, at nineteen, I am unable to do that my peers wouldn’t even think about, but my parents know to push me so that I’m achieving the best of my ability and I hope that this will eventually lead to a more independent life. I’m glad this post was able to give you hope. Good luck to you and your boys and whatever the future brings for the three of you!

  11. phoenixrobinsonblog

    24/09/2017 at 9:29 PM

    I can’t imagine how hard it must be living with autism, but it must have been even harder not knowing your diagnosis! Thank you for sharing your story; you will be helping a lot of people x

    1. RebekahG

      30/09/2017 at 5:15 PM

      Yeah, my life was definitely harder before I got my diagnosis. I think just knowing that I’m not a weird kid/not trying hard enough to “get better” when I thought it was all mental illness made things worse for a long time. It’s still challenging, but everyone has their challenges in life, and I’m determined not to let my struggles completely overtake my life! 🙂

  12. arcasela

    25/09/2017 at 12:55 PM

    There’s still a lot of people that don’t know much about Autism. I’ll be honest my own knowledge is very limited. It’s good to read about your experience and how you are learning more about it and not letting it get in the way of you living your life.

    1. RebekahG

      30/09/2017 at 5:16 PM

      There’s no shame in knowing very little about autism! If you aren’t autistic yourself or aren’t in the community, knowing little about autism is to be expected. Part of the reason I write my blog is to help raise awareness about it, so thanks for reading!

  13. diaryofablackgod

    25/09/2017 at 3:49 PM

    You are beautiful in every way and you are a great writer too.

  14. Ciara

    25/09/2017 at 6:48 PM

    I really enjoyed reading this! It’s a really big deal to be open about this kind of thing. Not sure I could! Loved this!

    Ciara | http://www.teatimewithciara.com

    1. RebekahG

      30/09/2017 at 5:17 PM

      Aw, thank you so much! Branching the topic initially was hard, but it feels like a natural thing to talk about now! I’m glad you enjoyed it.

  15. Mademoiselle

    26/09/2017 at 10:07 AM

    I like the positive note that you took with this; Autism can be such a good thing! And it means with have traits that could be used to the advantage of business, for learning, etc-if the environment took notice (!) I wish everyone was like this 😀

    1. RebekahG

      30/09/2017 at 5:19 PM

      Thank you! I think that’s one advantage to having my diagnosis when I was older, at an age where I could research and connect with others who had the condition instead of taking my parents/professionals words for the awfulness of this condition. I think neurotypicals will always fail to see the positives because you don’t hear of them so much in the media, but I hope talking about it makes a difference to people who happen to come across my blog.
      Having them notice it was an issue is definitely a struggle, especially if you’ve learnt to mask your symptoms over the years. I’ve given up now, but it’s a fight I’d start again (from the beginning) if I were to go to university!

  16. toastycritic

    26/09/2017 at 11:13 PM

    It’s so great that you have found an outlet in your life that you have been able to make work for you. I can imagine that blogging would give you the freedom to express yourself in ways you would be worried about in public.

    1. RebekahG

      01/10/2017 at 7:18 PM

      Thank you so much! Yeah, that’s definitely been the case. I’ve gained a lot of confidence thanks to blogging, and my communication skills have come on massively.

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