Missed Signs of Autism in Childhood

The Lost Years: One female autistic's story about missed signs of autism in childhood

At seventeen years old, you could consider me years away from childhood when I received my autism diagnosis. A common misconception about people who receive a late diagnosis is that we avoided the struggles that a lot of autistic people who were diagnosed at a younger age received. I’ve looked back at my own childhood a lot in the last two years, and have experience with other autistic children, so I feel confident in saying this isn’t the case.

Before I get into some of my childhood memories, I want to make it clear that I’m not blaming anyone for receiving such a late diagnosis. There was a lot less understanding about autism and what to look out for when I was younger, and I assume that a lot of the focus was on boys.

One of the first things I remember is struggling to follow the rules. The one memory that sticks out in my mind was when my mum enrolled me in swimming lesson as a young child, and I refused to join in. Instead, I would stand nervously in the corner of the pool while the swimming instructor supported those who did what they were told. My mum ended up removing me from the class in the end, which I don’t blame her for!

Another classic autism trait I remember experiencing was having an intense attachment to certain objects. When I was seven, I used to be obsessed with taking a towel to school to soothe me. I couldn’t leave the house without it, and I remember crying to the point of a meltdown when my teacher tried to take it off me on one occasion. I remember the rest of the class being congratulated when I re-entered the room for not acting like I had been. To me, this confirms my teacher’s hasty decision to brand me a nuisance child without taking the time to think that it could be the indication of something else. This didn’t necessarily mean she was a bad person; it was just how things were back then.

I was also in speech therapy in 2004, when I was six, because I didn’t talk very much. I thought this was for my lisp until recently, when my mum explained it was because I wasn’t very talkative. This was easily explained as me being shy, especially as I wouldn’t (or couldn’t) engage, and I was soon removed for children who needed it more than I did. Part of me wonders if continuing these sessions would have made any difference to my verbal communication problems now, but I can’t be sure.

When I was younger, I also struggled immensely with creating close friendships. I’m not the first kid to be bullied, but even when I had friends, I found it difficult to really get to know them. I got quite used to switching friends on a yearly basis with the change of the school year, quickly loosing contact with people I used to consider close because really, we were barely more than acquaintances.

The final memory I’m going to share is of multiple sensory sensitivities that were brushed off as attempts to cause trouble, or normal childhood things. I used to hate the feeling of sand as a young child, to the point where my parents had to carry me whenever we went to the beach or I would cry hysterically. I’ve always been very selective about foods, too, which would often mean I was labelled a ‘fussy eater’ during fruit taster sessions. There was one occasion when I was five when I asked my mum to tell a teacher I was allergic to oranges, because the teacher had made me sit on the carpet while other children were eating, and I insisted I hated them. I haven’t eaten another orange since!


The main point I wanted to make by reflecting on my own childhood experiences is that people don’t always receive an autism diagnosis when they need it. As is often the case, especially with females, people look towards other, easier solutions before accepting that their behaviour could be the result of something more permanent. It took me a breakdown which ended in a suicide attempt to get taken seriously, which I spoke a little about in last week’s post, and I know I’m not alone. I’ve read about many autistic women with similar stories, with many receiving a diagnosis much later than I did—sometimes by decades.

I think it proves that although we’ve come far with awareness and acceptance campaigns in the last few years, there’s still improvements to be made. And as someone who didn’t have the easiest childhood due to misunderstandings and a lack of vigilance, I can’t wait for the changes that will (hopefully) continue to happen.

Thanks for reading! If you’ve had any similar experiences and are comfortable sharing them, I’d love to hear about them in the comments below.

Until next time,

Goodbye!

 

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29 Comments

  1. Kayleigh Zara

    23/07/2017 at 7:11 PM

    Thankyou for sharing this, I’m so sorry you didn’t get a diagnosis till later on, this was the same for me but with a blood condition x

    Kayleigh Zara 🌿www.kayleighzaraa.com

    1. RebekahG

      24/07/2017 at 2:36 PM

      Thank you! I think a late diagnosis has been helpful in some ways, but there are definitely a lot of ways that could have been helped by receiving an earlier diagnosis. I’m sorry it took so long for your blood condition diagnosis, too.

  2. Claire

    23/07/2017 at 7:18 PM

    This must have been so difficult when you had know idea why you were struggling with these sorts of things. It must feel quite nice in a way to be able to put a name on why these things happened. I think that writing any posts like this will help other people with Autism feel a lot more normal and you should feel so proud of yourself for that!
    Claire | clairesyear.com

    1. RebekahG

      03/08/2017 at 6:13 PM

      Yeah, there definitely were difficult times in my childhood that I could have avoided had I received a diagnosis. It’s enhanced the life I live now, though, which is good! Thank you, that’s definitely something I aim for.

  3. Ashleigh Taylor

    23/07/2017 at 7:33 PM

    This a great post. I’m sure it’ll be great for those who have gone through similar experiences too! Thanks for sharing.

    Ashleigh | http://ashleighwrites.co.uk

    1. RebekahG

      24/07/2017 at 2:38 PM

      Thank you for reading!

  4. SaarBlogs

    23/07/2017 at 7:40 PM

    A diagnosis is a tricky thing, isn’t it? Either it can be helpful or a smothering label, an explanation looking forward or retro-actively. Thanks for sharing these signs, though, hopefully they’ll help someone come to a diagnosis earlier than you did, and that might make life more easy / understandable for them 🙂

    1. RebekahG

      03/08/2017 at 6:14 PM

      Yeah, it can be a really difficult process for many people. Thank you! That’s my hope.

  5. Mademoiselle

    23/07/2017 at 7:51 PM

    I identify with this a lot; it’s so silly, as virtually anyone in a position of power also insisted that there was not a diagnosis for me! It must have been very frustrating for you… If we had earlier diagnosis rates, maybe some problems wouldn’t be as bad as they can be! Great post x

    1. RebekahG

      03/08/2017 at 6:36 PM

      I got that a lot. I went to a school specifically for people with emotional needs, and every teacher I had, as well as the farm I went to, insisted that I couldn’t possibly be autistic, right up until the time I received my diagnosis. Oh, I definitely think the rate of suicides would lower, and mental health problems, too. I think the second cause of death of autistic people is suicide (after epilepsy), which is scary, and not how things should be. Fingers crossed things will change in the future.

      1. Mademoiselle

        03/08/2017 at 6:52 PM

        If we can educate enough people, hopefully it will 🙂 I did have a brilliant teacher at college-and he treated me with the privilege of being neurotypical for 5 hours a week-we need more like him! (There’ll be a post about him soon..)

        1. RebekahG

          04/08/2017 at 10:21 AM

          Yeah, hopefully. That’s really cool! I look forward to the post. Is it the letter to the best teacher ever thing that you posted in your schedule update on Instagram? I thought that looked super interesting! The lecturers at the college I go to are pretty good at treating me like they would anyone else. I have one who is amazing at doing that while also helping me when I do run into difficulties.

  6. withanoceanviewblog

    23/07/2017 at 8:12 PM

    I’m so sorry you had to go through this immense difficult time growing up and it not being diagnosed until you were older. It’s very brave of you I think to write this to bring awareness to others to recognise the signs.

    1. RebekahG

      01/08/2017 at 11:34 AM

      Thank you! There were definitely difficult times that could have been avoided, but thankfully things worked out in my favour eventually. Thank you!

  7. corinneandkirsty

    23/07/2017 at 8:15 PM

    What a post! I didn’t this could happen! Thank you for writing such an eyeopening post, I hope a lot of people red it and that more and more people will be aware of this!

    Kirsty
    http://www.corinneandkirsty.com

    1. RebekahG

      03/08/2017 at 6:35 PM

      I think a lot of people are the same; unless people are willing to talk about it, there are parts of a diagnosis–any diagnosis–that you won’t be aware of. Kind of like the behind-the-scenes, where the media only broadcast what they want you to hear. I’m glad I was able to open your eyes, though, haha!

  8. Sean (With a Fada)

    23/07/2017 at 8:33 PM

    Great post! I relate so much to this; I was diagnosed with Asperger’s at the age of 15 also after becoming suicidal. I had the food issue, had speech issues when I was very little, and looking back had many many signs that something was a bit “off”. Wish I had been diagnosed sooner, would have put my mind at ease knowing that there were others like me!

    1. RebekahG

      01/08/2017 at 11:37 AM

      Wow, thanks for sharing your story! It seems a lot of people go through the process of not being diagnosed until they’re in crisis mode, which is totally unacceptable and something I hope changes in the future. These stories from people like us about what we went through as undiagnosed children are definitely crucial in changes the attitude of medical professionals and the public alike about ways to detect our condition in the future (I hope so, anyway!). Yeah, I completely agree about your last point–I’ve come to know a few people who were diagnosed with autism as teenagers through blogging, and it’s really helped me feel like part of a community to know I’m not alone in all this.

  9. lisawilliamsx

    23/07/2017 at 8:38 PM

    I found your blog through twitter and honestly, I’m so glad I did! 🙂 I was diagnosed with Autism at the age of 2. My mum started to notice similar behaviourisms between me and my older sister, who was diagnosed the year before me. I hope to talk about my experiences on my blog one day, and your blog has definitely inspired me to do so. 🙂 I look forward to reading more of your posts in the future, keep up the good work. <3

    lisawilliamsxblog.wordpress.com

    1. RebekahG

      01/08/2017 at 11:40 AM

      Thank you so much! Wow, that’s a very young diagnosis–I bet that made all the difference in your childhood. I think having autistic siblings definitely changes the outlook a parent has towards their child when difficulties occur. Even though me and my brother presented mostly differently, it was having the autistic sibling that made my mum start questioining my own brain, too, althogh it took slightly longer for me to get a diagnosis in the end, haha!
      Good luck with talking about your experiences on your blog. It can definitely be daunting at first, but it’s SO worth it. The majority of comments I get in response to my posts are positive, which really inspires me to continue sharing my story. I think there’s only been one or two occasions where I’ve had someone offering to ‘pray away’ my disability, as if this was a punishment. Being diplomatic in response to comments like that can definitely be difficult, but it’s one comment out of many! Good luck.

  10. Nini

    23/07/2017 at 8:40 PM

    This must have been so difficult! My brother was diagnosed with Autism pretty late and I thought that was bad, I can’t imagine what it’s like being 17 and finding out. I’m proud of you for writing so openly and honestly and you could help so many, you’re amazing!😊

    1. RebekahG

      26/07/2017 at 7:04 PM

      It was crazy for a while, to say the least. I wrote a post about how I felt about it a year after my diagnosis, which you can read here if you’re interested in how I felt after it had all settled down, haha! Thank you! 🙂

  11. Lia

    24/07/2017 at 1:07 PM

    I got diagnosed when I was fifteen, so fairly late too. There’s a specialist autism school near me that some of my autistic acquaintances went to but it started at age eleven, and I didn’t get diagnosed until I was fifteen, and the other thing is that it’s only for boys. Because boys are obviously the only ones with autism. I wish I could have had a chance to go to a school like that because I was the outsider in normal schools. Way before my diagnosis. I was apparently very chatty and bold in my toddler years, but then became a lot more reserved once I started going to school, probably because I didn’t like interacting with the other children; they were different to me. I much preferred older people. I actually got diagnosed with dyspraxia when I was about ten or eleven, and that should have been the point where they realised I had something more, because it was so obvious during my diagnosis of that, but still it was overlooked. They assumed I was so weird because of the dyspraxia, which makes people more blunt, as well as all the physical problems. It was when my cousin got diagnosed that my mum went to the SENCO, and was like, look I think my daughter has this, and then I got referred and diagnosed. My mum was the reason for my diagnosis and I am so grateful to her. The diagnosis cleared my brain a lot. I used to collect sea shells and I still have a collection of marbles; those are some quirks of mine. This post is so relatable 🙂

    1. RebekahG

      03/08/2017 at 6:34 PM

      Oh wow. I’ve heard similar stories–because women quite clearly can’t be autistic, right? I saw a documentary about the only school in England which caters for autistic girls, and I SO wish I had been able to go to somewhere like that. Like you, I feel like I would have fit in more if I was surrounded by like minded people. It’s crazy that they don’t consider other options once they’ve given you one label, isn’t it? Like you should be grateful that you’ve had one part of your personality discovered, that you shouldn’t even worry about the rest of it. I’m glad your mum was able to advocate for you and get your diagnosis in the end! My mum was the person who did it for me, too.
      I LOVED collecting things as a child, too! It’s like we’re SO similar. I still do, to some degree, although it’s nowhere near as intense as it used to be. I like collecting notebooks and weird bottles/glasses now, though my mum recently made me get rid of a bunch of them, haha!

      1. Lia

        04/08/2017 at 3:30 PM

        yeah i think i saw that documentary too. But i think it is like on the other side of the country to me, too, that school. Yeah, go mums! i’d say it was my cousins diagnosis that got her really thinking, because me and my cousin are quite similar. Yeah, same, i now collect erasers xD when i see some cute ones, i just get them hahaa I collect notebooks too and my mum doesn’t understand and won’t let me get more coz she’s like i’ve already got enough but i like different ones! haha i suppose we are quite similar, i really wish i had some like-minded friends irl. My friends don’t really understand me, because they’re not like me, so it gets lonely haha i swear everyone online is so much more similar to me than people i know irl 😂

  12. placeinthisworld247

    24/07/2017 at 2:30 PM

    I was dxed with when I was twelve or thirteen, but really didn’t “know” about this diagnosis until i was in my twenties! I didn’t talk that much either when I was younger, and I, too struggled with people bullying me and not wanting to deal with the likes of me. I am so sorry though that you have had to go through this, and that people weren’t kinder and more understanding of you. I am so glad that more people are understanding now though. Hopefully, someday more people will be accepting of autism and not treat us like a plague to be avoided, but a human being to be loved.

    1. RebekahG

      01/08/2017 at 11:51 AM

      Oh wow, that’s a long time to go without knowing about your diagnosis. It seems like many people who received a late diagnosis went through similar experiences. Honestly, I’m quite shocked by how many of us had communication difficulties when we were younger, but that weren’t thought to be an indicator of autism alongside other things we experienced. It’s one of the main indicators that something’s wrong, but I guess if you don’t tick all the right boxes, you’re just forgotten about–especially if you can pass effectively, haha!
      Oh yeah, definitely. I hope that attitudes continue to change as time goes on. I hope if I ever have children who happen to be autistic, that they are treated with respect and understanding that I missed out on myself as a child.

  13. abbeylouisarose

    03/08/2017 at 3:01 PM

    Thank you so much for sharing this insightful post, Rebekah! Educating people based on your experiences can only help to make sure that the signs of autism are picked up in more people at a younger age! I am glad that you received your diagnosis in the end and that you’ve chosen to be such a fantastic ambassador with raising awareness, you should be so proud of yourself!

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

    1. RebekahG

      03/08/2017 at 6:31 PM

      Thank you! I think my passion for raising awareness about the condition is the one saving grace in receiving a late diagnosis, though I definitely hope the next generation don’t have to go through the same things I did in childhood due to a lack of understanding. It’s definitely something I’ve enjoyed blogging about, and don’t plan on stopping any time soon.

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