I hope this is allowed. I read the rules and it appears to be okay.
I wanted to tell you my story towards getting a diagnosis (am still yet to get an official one), and maybe hear some of your stories too.
As a toddler, I was very outwardly social; I would wave at everyone and was very hyperactive. I was an avid reader, and I could read a book everyday from the ages of 3 or 4, to the point where I had to be given more advanced books from the nursery to keep me occupied whilst the other kids were learning to count to ten. Books were like my escape; I love that I had learnt words and that I could use them to find out new things.
Once I got into school, I suppose the problems really started. The tantrums-or meltdowns, which is what they were really-still hadn’t diminished from when I was a toddler. The smallest thing could set me off-if my shirt had an uncomfortable label, if my sister won something and I didn’t, or if I had to walk around a busy supermarket. I also got really, really into things: for me as a child, I was strongly interested in the usual affair for my age; Pokemon, Beyblade, The Powerpuff Girls, Spyro the Dragon, Westlife and Blink 182 for some reason, but also with dissecting insects in a makeshift “hospital”, trains and specifically the times all the trains came into a certain station, and walking around the local museum over and over without even really looking at the displays. My mum was a nurse and noticed autistic traits, so she flagged them up to my school’s SENCO when I was about six, but they told her I was academically able and that I would likely grow out of my behavior, so the matter was swiftly dropped.
I was well-behaved in primary school, and I enjoyed being the teacher’s pet, because I thought that that was the correct thing to do. I had started reading the Harry Potter series and I absolutely idolized Hermione; she was clever and bookish like me. I didn’t understand that being like Hermione would likely get me bullied. I liked school for the most part until about year five, even though I was clueless on social norms; I would get told off for something like forgetting a book, standing in dog poo and not realizing, or not wearing my coat at breaktime, and then would get really upset because I couldn’t understand why they were angry at me. One time the teacher wasn’t handing sweets out, and the girl next to me got a sweet but the teacher passed me up to go to someone else. I said that I hadn’t received a sweet, and the teacher turned off the TV and shouted at me in front of the class that I needn’t be so selfish, even though to me the order she did things seemed illogical. I had one friend from nursery, but I didn’t really know how to be a friend and one day in year five, she decided we weren’t friends anymore. It was fickle, but to me it made my life pretty unbearable.
I had no real friends in my last two years of primary, and I was having some spectacular meltdowns at home because at that point, hormones were starting to kick in. My parents divorced, which caused uncertainty and change, something that I didn’t deal with very well. At this point as well, I discovered that I wasn’t a genius as I had somewhat arrogantly believed before (people kept telling me that I was clever and I believed them), and I discovered that I was really struggling at anything that wasn’t English. I would get told off for not doing homework (I genuinely forgot to do it), and for not paying attention. I spent a lot of time looking out of the window and daydreaming. When it came to do creative writing, I got really creative, to the point where my mum would be called into school to discuss the dark and mysterious things I wrote. Another book character I really connected to at the time was Tracey Beaker, because she was imaginative and wrote wild stories like me. There is a particular passage in one of the books where she talks about her amazing story she wrote, only for her teacher to cover it with red pen and describe it unfavorably, and I related to it hard.
Aged 10, my mum got together with the man who is now my stepfather, and we moved into a new house away from my old primary school. I was in a new primary school for one term, and I started songwriting because I was starting to get into the emo-type music due to my 14-year-old stepsister liking it. Songwriting seemed like a cool thing to do, but because the bands I was listening to were writing about dark subjects, my subjects were dark too. I shared a dark song about suicide to the primary school choir I was in, which is darkly hilarious in hindsight but went down exactly as you would expect (just to add, I wasn’t suicidal at ten, I was just blindly oblivious to the levity of the subject). Nevertheless, I finished at that school relatively unscathed before starting at my first secondary school.
My secondary school was rough, and had been in special measures for quite some time. This, I could probably deal with. At 11, however, I was not equipped for the trappings of high school. I didn’t know how to wash my hair or put it up, and didn’t bother trying to learn because I didn’t see the point, so I had very matted, straggly, greasy hair almost perpetually. I was exceedingly socially awkward and was not very good at conversation, and I was still very bookish. In short, I was basically bait. The next year and a half consisted of me getting punched in the face twice, slapped, having my hair pulled, having chewing gum stuck in my hair, having cans of pop thrown at me, being framed for stealing things and having my belongings stolen. I tried desperately to copy the fads that people were into, and tried to listen to the music people liked, but to no avail. I found some levity in music, and I made friends with a girl with learning disabilities who was a genuinely lovely person and was being constantly bullied. That girl, though, had a diagnosis and got support from the teacher. I did not. I went to a lot of meetings with my parents, and the teachers basically said in a roundabout way that I needed to try and fit in and look the part. Learning difficulties or autism were not even bought up, or if they were in a private conversation, they were dismissed. One day, when the bullying was particularly bad, I was invited to sit in the Base, which was an area for people with special needs to spend their breaks in away from the bullies, and it was wonderful to be able to be on my own. When I went in the next day though, they told me I could not use the facility as I didn’t have special needs, and then told me off when I tried to plea that I was going to get punched in the face if nobody helped me. I’ve blocked a lot of it out, because it was a miserable period.
At 12, we moved again and I went to a different school. This time, I had a different experience. I was determined to look the part. I got attention for being a new kid-they didn’t get many being a village high school-and I was immediately invited to sit with a group of girls who were incredibly nice and didn’t conform to any expectations. They weren’t the cool kids, but they’re weren’t uncool either; they were normal girls, something I so desperately wanted to be. We would go around in a little foursome, and I would try and copy their behavior. Then I met Ellie. This isn’t her real name, because who knows who’s reading, but Ellie had a diagnosis of Aspergers Syndrome and we quickly bonded over our love for emo music and going to gigs. I was stuck between two worlds; I was more akin to Ellie’s quirky ways, even though she had meltdowns and had to be removed from lessons, but I wanted to be normal like the girls I was sat with. I think I ultimately became a bit of a rebel.
By year 10, I was sneaking out of PE class, answering back and refusing to do work. I had also started to develop an image of studded belts, pins of my tie and lots of heavy black makeup, and I would protest when the school told me it was unacceptable. I had ditched the nice girls and had started hanging out with the “emo kids”, although I never really connected with them particularly well. Around this time, I started developing bad anxiety and depression, and had to see a social worker and a counselor. I’d also started self-harming and getting into erratic romantic relationships. When I confided in a teacher and said that I thought I had Aspergers, something that took a lot of working up to, she told me to not be ridiculous and that I was normal, I just had a few “teenage problems”. I also got told by my doctor that I was just “being a teenager” when mum expressed her concerns about my behavior. When I wasn’t in school, I’d go to our garage and spin in circles for hours to calm me down, something my family tried to put a stop to because it was weird. I’d spend most of my time shut in my room with the same album playing over and over, and not doing much of anything; I just enjoyed being alone.
I managed to wrangle nine good GCSE’s despite doing very little studying, and started sixth-form, where my anxieties got extremely bad and I finished the year with an attendance of 47%. My relationship with my stepdad completely broke down by this point, and we would both physically lash out at eachother. I was still having meltdowns and was shouted at for them and told that I was too old for tantrums. I somehow got 2 B’s in my AS levels, but with my attendance and behavior, I wasn’t allowed back for year 13. I enrolled at a college to do a Health and Social Care course as I was interested in caring and that it was a reliable income, but I found the course easy and patronizing, and once I had finished, I still couldn’t get a job in the field because I wasn’t 18 until the summer. I ended up working at McDonald’s instead.
McDonald’s was intended as a stopgap, but I found that I liked the routine tasks and the communication skills that I was able to develop from talking to customers. I was never considered management material though as I was “a flapper”, and after a few years I started to have severe panic attacks. It was at this point I moved out and into a boyfriend’s, which begun a cycle of constantly moving and being homeless that went on for five years following. I did other jobs-bar work, working in a church and cleaning-but I was hopeless at all of them. I thought about retraining as a nurse, but never finished my access course and found all the maths and science difficult to get my head round. They attributed my difficulties in understanding to laziness, as “if my GCSE and AS grades were good, I shouldn’t be finding this work so hard”. I got told I was lazy so I started to believe it, and decided I wouldn’t go into education again. I also accepted that I wasn’t autistic, and that I could “grow out” of my weird behavior, so I tried my best to be the perfect daughter, the perfect employee, and the perfect girlfriend. I moved on from McDonald’s and went into a job I loved, but it to was a dead end. At this time, I was very much into the workings of society, and after working as a support worker for disabled adults, I decided that I wanted to retrain to be a social worker.
I started an Access to HE course, and for the first time, at the age of 24, it was suggested that I was having difficulties with comprehension. Initially it was suggested as dyspraxia and dyslexia, and I got extra time in exams which certainly helped. I never sought out a diagnosis though because I didn’t want the hassle. Then when I started university, I began struggling with the anxieties again, and there, after chatting to the disability liaison officer for half an hour, he suggested that I was on the autistic spectrum. It was like a weight had been lifted, because somebody believed that I wasn’t just lazy, awkward and weird.
So here I am, and I am in the process of diagnosis. It is likely, at the grand old age of 25, I will get a diagnosis that perhaps won’t do much, but will provide me with validation about why I was always so different to the others as a child. I have managed to learn how to mask and pretend that I am someone I am not. I am the real me to very few people, not even to many of my family who expect me to behave “normally”. I am expecting not to be believed, as I hold myself very well. I just wanted to share my story, and wondered what yours was.