diagnosis

Diagnosis Stories: In Their Own Words: Sarah

Thank you, Sarah, for writing this for me. Her story is heartbreaking, beautiful and hopeful.

Okay, so my story is this. I’m a bit nervous about sharing all the details and how I got diagnosed but I think it should be fine.

When I was a child I was almost happy; however I needed speech therapy because nobody around me would understand what I was trying to say. I just spoke too fast. I can now talk normally–however if I am nervous or excited I still can sometimes talk too quickly, sometimes without realizing it. I can feel embarrassed when this happens. My mum was a child minder/baby sitter so for awhile I was being taught things at home with other children; however it was obvious to my mum, who already had a child and had experience dealing with children that I was a bit different than the rest. If she was to ask what the picture of an animal was–let’s say a cat–instead of saying cat, I would keep meowing instead. Sometimes I acted like a cat and when I would be asked to say what the animal was I wouldn’t say the word, even though I knew what the animal was. Luckily since we were all very young nobody picked on me and they would all try to help. I had a special interest in animals so when mum told others about what I was doing she got little exercises for us to do with animals and this did seem to help. At first, instead of watching cartoons, I would watch music and animal documentaries–which annoyed my sister at the time when she wanted to watch cartoons instead.

I did end up going to the Willow’s which is a special needs nursery in Portsmouth. I got assessed. Everybody could see I had something but none of them could pinpoint what that was so they all just kept trying different things to help. I did go to ‘normal’ primary school and I generally got on well there…I did get bullied; however, that did get dealt with, so even though I was upset when this started happening, I did not suffer from depression. I was still overall a happy child. I only had a few friends, as I always felt awkward around people. I still feel awkward around people but that’s usually only with very new people. My teachers for some reason did not want me to take SATS they said because I might get too anxious, but I told them I still wanted to do it and they let me. I can’t remember the grades I got but I think I did reasonably well.

I’ve always had special interests. When I was little, my first special interest was the song “I Will Always Love You” by Whitney. I think I was a baby, so most likely I did not understand the song and I don’t know why I loved it so much back then…It amused my family though–every time it came on I would stop whatever I was doing and keep my eyes on the screen. If I was talking I would stop. My parents even recorded it at one point and they would play it to stop me from crying whenever I got upset about something. It worked. They didn’t really think much of this obsession but my mum was a bit worried when I was into Pokémon because 10 years later I was still obsessed with it–however, she didn’t know anything about Asperger’s or autism in general so she did not suspect it. I also had a special interest with animals and I still love animals a lot now.

When I was in secondary school….I still had only a few friends but I was still mainly happy. I tried to focus on the positives instead of the negatives. Sometimes this was easier said than done. I went to St Edmund’s Catholic School, which is supposed to be a good school… I suppose education-wise it was…However, I got bullied a lot more in St Edmund’s and it never got dealt with, even when it was happening right in front of them. At first it was only stupid name-calling by people I never even talked to, so I managed to ignore it throughout the years, but this either started in Year 10 or Year 11…I think it was Year 11. Anyway, one of my friends just suddenly turned on me and started bullying me every day of my life there…She was very unpleasant…It did not help that I am extremely sensitive… Too sensitive in fact in my opinion…She already knew I was/am gay but then for no reason at all she started spreading it around the whole school and made other rumours about me…She also started saying behind my back that I was the ugliest girl in the whole school…To be perfectly honest I don’t think I’m overall bad but back then I had less confidence and this hurt me mainly because I believed this to be true…Also it wasn’t just her but my friends who were also friends with her also turned on me…I still don’t understand why because I was always friendly with them, but anyway, she at one point started hitting me physically and throwing rocks at me…She hid my stuff or would throw them around the classroom…Once she actually took my lunchbox and threw it into the pond so I actually had to starve the remainder of the day…When it got to that point I thought enough was enough and I went to the head of the year…She told me to write a letter and give it to her but she still did nothing about it in the end.

As if that wasn’t bad enough, I was also getting bullied by Mum’s boyfriend…I got bullied by him for the five years that he lived with us. When I first started getting bullied with him I could cope–I would get upset but I could cope with it…I went to school and that would give me a break from it, or sometimes if he went away on his boat, if I got picked on at school I would come home and have a break. So at first I wasn’t thinking too negatively, even though sometimes I would; after all, I am still human. I did feel I was different when I was in secondary school but I didn’t know why exactly. However in Year 11 I was getting bullied at home and school…I did sometimes suffer from depression… It was worse at home–I would be told by him that nobody is ever going to love me, which for a short while I actually believed…I was also being told that nobody cares what I think or what I have to say. I would also be told that I was useless, stupid things like that… He would also try to get my mum against me. I think sometimes she believed him at first, then realized he was lying…Sometimes she would know he was lying straight away. One day my mum’s boyfriend had hurt me emotionally so much–I can not remember what he actually said to me, but after he left I physically wanted to hurt myself…I didn’t, but I remember thinking, “One day I am going to go insane.” That’s how stressed-out I was. I’m not sure if they had stayed together longer if I would have done something to myself. I remember thinking I couldn’t take it anymore, but then soon after they broke up and I didn’t have to deal with this anymore.

I would like to say that although I did not like St Edmund’s towards the end, I was sometimes happy in Year 11. I had a friend called Maria who I would talk to after school and our conversations always made me feel better…Sometimes she made me feel so much better about the whole situation at school that I would laugh. Even if sometimes she wasn’t making jokes, just talking to her when I was upset would cheer me up. We are still friends now and she remains to be an important person in my life–regardless of what happens in my life she always will be. Despite not always having good luck with friends at school, some of the people I knew outside school (a few from when I was) were brilliant. I can’t list all their names but I appreciate each and every one of them. My sister is also brilliant and talking to her would usually make me feel better about things. I consider her to be one of my best friends.

Oh yes, I forgot to mention that throughout my school life I had an education psychiatrist and a few other people…They knew I had something but they did not know what I actually had. They tried helping me and it would help a little. I guess I always tried hard and I always managed to reach the targets. The school did not want me to take GCSE’s; however I knew how important they were, and so I told them I wanted to do it, and they had no choice but to let me. I got decent grades; however, I think I would have gotten even higher if I actually had the right help in school.

College…I liked animal care better than secondary school but I still had some problems…My first year in animal care wasn’t too bad–though people would have disagreements, I usually managed to stay out of any trouble. I had started being a little more careful when I was in college. After my last year in school I was nervous about meeting others. My second year in college, I did have a few falling-outs but I was careful on how I approached things–I gave them space and just let them come to me when they were ready. However, I did feel lonely at one point since everybody was friends with this person everybody was always around them…So I was often alone until we became friends again. I didn’t get much help in college, but I did very well still–in fact I would always get one of the highest grades out of the whole classroom. Nobody really suspected that I had autism. You’re probably wondering how on earth I got diagnosed. I’m nearly there….

When I did Childcare at college…This is when everything went downhill for me…I had just had a breakup and I probably should not have sent myself to college, but my mum wanted me to go, and I didn’t really have the energy to argue with her about it…I was upset but sometimes I could deal with it…Anyway, the year had already started, so people were already in their own little groups, and I had to work extra hard to fit in and actually make any friends. I’m a nervous and shy person so this was really difficult for me…I was more nervous than I usually would be because, as my luck would have it, the same person that made my last year in school a living hell…Was in my same classroom! She was also friends with what appeared to be everybody… Just so you know, nobody in my family knew I had a breakup so they did not know I was in any sort of emotional pain. I was hiding it a lot of the time and just pretending to be happy when I wasn’t. I would have talked to my sister about it, but as it just happens she also had a breakup at that moment. I thought that was the last thing she needed, so I didn’t mention it to her at all…I would hate this but the girls that were in my class seemed to be obsessed with talking about boys and their relationships…They would talk about it for hours, every single day, and I had to listen to that every day of my college life, which would then just make me think too much…At one point they had even asked me if I was with someone. I didn’t give them a whole story because I knew I couldn’t with people I’ve only met, nor did I want to, but I said I just had a breakup…In a way I had hoped this would have made them stop and they would talk about something else… That is something I would have done…But no, they kept doing it regardless. Months went by, and despite trying to act normal and make some friends…It never happened. I usually ended up by myself which made me feel lonely and I was slowly becoming depressed. At one point outside college I met a guy called Paul…I felt oddly happy with him and we got along well…It would most of the time make me forget about my problems. I felt really happy when we were texting as well, and we would actually text each other a lot, so even though I was still by myself in college, at times I wasn’t overly depressed anymore…We dated at one point it didn’t last overly long…It was simply too soon for me. But I knew I had hurt him, which led to me feeling guilty, so I was back to being sad a lot of the time and again just kept it to myself…And no, I didn’t date him to fit in or whatever. I genuinely liked him, but it was beginning to hurt me more that I was seeing somebody else…I started having what felt like a lot of disagreements with my mum, which also stressed me out…

And then one day I suffered from a psychosis episode…I had probably been developing it for the last few months that I had been at college, but nobody (at least in real life) knew enough about mental illness and nobody really knew I was mentally ill until one day I just completely…snapped. I don’t remember a lot of it, truth be told, and I don’t think I want to remember the exact details. Everything was a complete muddle for me and I was confused even by basic things. My emotions became unpredictable…Everything I said probably didn’t make much sense…I remember at one point I tried to talk to somebody about it, but I wasn’t really in the right state to so it didn’t make sense…I remember I saw a counselor, but I kept talking about different things that had happened in my life that I got stressed about…I probably remember this because I then got told that I’m too intelligent for my own good…I was shocked by this. I’d say I’m about average but really, too smart for my own good? Above average intelligent? I doubted it and I still doubt it to this day. I didn’t physically hurt people but I said things that hurt others…To be honest, looking back, a lot of it wasn’t even what I would normally think. In fact, usually I would have thought the opposite…My mind was a mixture of films that I somehow memorized years ago, like 300 and what other people have told me…Lord knows why I even still remembered it because it would be things from years ago, not things that had happened recently…Like one person told me once that they believe religious people are just brainwashed…I had in my head muddled it up to people being brainwashed in the world. I believe I said something about 9/11 because we were taught about it in Citizenship in school, and other people would talk about theories….I saw things from horror films…Some people online probably thought I was trolling, but I was actually scared…

Anyway, despite what people generally believe of mentally ill people, I was actually more of a danger to myself than others and I never once physically attacked somebody, nor did I want to. I did go to hospital for a few months, and when I was asked if I wanted to go back to childcare, I said no. I think at the time that was the best choice for me. When I actually realized I was sick I thought I was going to be this way for the rest of my life, but no, that’s not actually true. In less than a year I got better and was back to my normal self…Heck, I’m even better now before I was even poorly! I’m stronger, wiser, and I’m more positive than I was to begin with. People usually take longer to get better. I’m still on medication but on a very low dose and I may be coming off it soon. I now do voluntary work at a pet shop. Sadly, I lost a few friends due to my sudden craziness as it were, but most people seemed to be understanding that I was sick, not myself and such, and forgave me. I almost lost somebody very important to me, but I sent them a message apologizing for everything…She needed time which I could understand but she still sent me a message every now and then to see how I was. We are friends again now and we’ve been fine with each other ever since. I’ve learnt how to deal with stress better now, so I doubt this will happen to me again…My favourite thing to do to help with my emotions is art. I always liked my art but after getting poorly it became a passion of mine. I now go to an art group and I try to socialize a little when I’m there as well…I tend not to tell people what I had gone through because I know a lot of people will suddenly be scared of me and I don’t want people to think I’m crazy or something, though I know most likely a few do think that.

You may be wondering why that was even relevant to how I got a diagnosed with Asperger’s…Well that’s how I got it truth be told. Sometimes I can’t believe I had to go through something like that to get diagnosed with Asperger’s, but that’s how it happened. My therapist read my notes and just instantly said to my mum “I’m going to assess her for Asperger’s.” So for the next couple of months she was assessing how I would do things while studying it more so she could diagnose me along with another professional, and yes, they did indeed conclude that I definitely have it. My mum kept doing research on it and we agreed that a lot of it sounded like me. Not all of it but a lot of things did. And life has generally been easier for me now that I’ve been diagnosed with it. Me and mum still have disagreements like normal people do, but she is generally more understanding than she was. I now go to a social group for people with Asperger’s, and while I am still shy around people there, I don’t feel as awkward as I usually would. I do tell people I have it and people seem to accept it. I haven’t really had many problems with that. To most people I’m still Sarah. One person had watched the Undateables recently and a person had Asperger’s on that show…That person on there obviously didn’t know I had it or if they did they didn’t stop to think how I would feel…They made some sort of sarcastic joke about them…I felt offended about it and since they didn’t apologize I simply took that person off my friends list. I hadn’t spoken to that person for ages anyway and I was hurt by it, but it was stupid and I believe I’m better off without people like that. Thankfully I no longer believe nobody is going to love me, and I do think one day I will find someone, but until then I’m going to enjoy single life. I am not going to listen to anybody who says otherwise just because of this condition. There are probably some people who have endured worse than I have…But I think I’ve still gone through a lot and without sounding big-headed I am a bit proud of myself and I have met so many wonderful new people who I probably never would have if I didn’t go through all this.

And if anybody wants to look at my artwork here is a link to where I post most of them http://thewolfgirl011.deviantart.com/

6 thoughts on “Diagnosis Stories: In Their Own Words: Sarah

  1. It's upsetting that you went through such a struggle before getting the diagnosis, but it's great that you're able to have an answer and now you can have some compassion for yourself. It's also such a gift that you're able to express yourself through your artwork. Keep it up!

  2. Thank you for sharing your story with me. You have given me insight into what my son goes through both at school and in how he thinks. Thank you. You should be proud of yourself. While diagnosis now is more common now, growing up for you I suspect it was not and no one really knew…. I admire and thank you for sharing. You should be proud of all your accomplishments.

  3. I'm glad the diagnosis helped smooth some things for you. I wonder how much better it might have been if it would have happened sooner. Thanks for sharing the story. I really like the colors in your Wind Walker painting. Really striking.

  4. This is so great that you shared this! You had such a rough go, and I wonder how much you would have been helped had people known when you were a kid what you were going through…. Thank you so much for sharing your story. It's really tough, and heartbreaking, and it must have been difficult to share, but I appreciate your openness and honesty. My son is 10 and has Asperger syndrome, too. I hope having an earlier diagnosis (which is so much more likely nowadays than it was even 10 years ago), along with the special help I'm trying to provide for him, will help him to avoid some of the feelings of isolation and rejection you had to endure.

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