Disclaimer: This story contains mention of domestic abuse and eating disorders that may be triggering to some.
“‘This doesn’t seem like an anxiety disorder to me, it seems like much more… have you ever heard of Autism?’ my Steps 2 Wellbeing therapist mentioned to me during an assessment. I scoffed. Autism? That couldn’t be right. It seemed so farfetched and yet it was far from the first time I’d had this suggested to me. Autism/Autistic/Spectrum – I’d heard those words so many times throughout my life that at this point I don’t know why I was shocked when a professional finally sent me for a diagnosis. I’m jumping ahead of myself – ‘chopping and changing stories and jumping between them’ the psychologist says, that’s a common autistic trait apparently. I’d apologize, but I’m learning not to say sorry for the things that make me who I am – and I’m a lot of things.
I’m fiercely loyal to my friends, incredibly passionate about things I believe in, I strive to be an individual – completely different from everyone else. I was born with a natural gift for loving animals and seem to attract any animal to me like a magnet, no matter how nervous or fragile they are – they always seem to seek peace with me over anyone else. I’m Gracie, I’m 24 years old, and I’m Autistic. Without that, I don’t think any of the personality traits I’ve listed above would exist, the ‘Gracie’ everyone has come to know and love wouldn’t exist. When people hear ‘Autism’ they think ‘Disability,’ but it’s so much more than that. This is my Autistic journey.
I was born in 1996 on the south coast of England, UK. Autism was a lot less diagnosed back then. People seem to think it hasn’t existed since recently – although Mount Everest wasn’t discovered until 1852, but I’m pretty sure it’s always been there. I began life with a typical family setup, a loving father, mother, an older sister and a dog. We had a big house with a big garden. My room was painted purple , although I’m not sure why, because my favorite color was blue. My birth mother was always trying to force me to be more ‘normal,’ more ‘girly,’ she never seemed to find my quirks endearing or humorous. The walls being painted purple against my wishes for them to be a more ‘boyish’ color led to me grabbing a roll on deodorant one day and using it to draw on my feature wall with my initials. The wall is still stained to this day, just one of the many meltdowns my mother caused during early childhood that could have been easily prevented.
When I was 5 years old, she decided she’d rather watch an episode of Coronation Street than her own daughter, and I had a meltdown that resulted in me yanking a wooden door open to retrieve a toy I wasn’t even intending to play with. The force of my aggressive tugging meant the door swung open violently, revealing a rusty nail sticking out the door frame at exactly my eyebrow height. Strangely, I don’t remember being in any physical pain despite my forehead being split open and blood gushing out – another autistic trait, ‘inappropriate responses to physical pain’. It was actually my older sister who was more distressed than I was, and had to get my mother’s attention away from her beloved soap operas to tend to me.
I recall her refusing to take me to hospital, despite me being literally covered in my own blood at this point, and my Dad coming home from work and racing me to A&E in his brand new X-Trail. Despite the blood going everywhere, I distinctly remember him being a lot more preoccupied with my head injury than his brand new expensive car. That’s the main difference between my two parents. One of them wanted me around, it seemed the other would do just about anything to get rid of me.
After my trip to A&E and getting my head glued back together, I was left with a pretty cool scar that is still vivid to this day. It’s a bit awkward explaining how it happened when people ask, and having to explain it was a combination of child neglect and autism. I used to be embarrassed about it and try to hide it under pieces of my hair, but over time I’ve learnt to recognize it as a physical feature that is unique to me, and I’ve learnt to love it.
When I was 6 years old, my parents finally divorced. They’d been unhappily married for a long time. The court proceedings seemed to go on forever, but eventually they ruled on joint custody between both parents. My dad kept the house we’d been living in as a family, and my mom moved out into a flat down the road. This begins the years of joint custody that I can only describe as He*l. Although I love weekly routines, I never stayed at one house for longer than 48 hours, and felt like I was constantly living out of a rucksack. I spent my days at primary school distracted by how many hours it would be until I could go to my dad’s house, where I wanted to be. I spent the time at my dad’s house playing games, running around with my dog in the garden, playing in the park with my dad. I spent the time at my mom’s house locked in the bathroom, screaming and crying about how I wanted to be at my dad’s house. I used to take my duvet and my favorite teddy bears in there with me and I remember multiple occasions where I fell asleep in the empty bathtub, wrapped in my duvet.
I didn’t understand why I wasn’t allowed to go see my dad because of what day it was, or why I couldn’t just go live with him when this woman clearly didn’t want me around. On her custody days she would give me to childcare groups, local clubs, any of the neighbors who would take me – she’d even hand me over to the local church on a Wednesday night just to be away from me. I honestly don’t think she cared where I was, or who I was with, as long as it meant she didn’t have to deal with me.
Unfortunately’ my childhood was subject to a lot of neglect and abuse on my mom’s behalf, and it only got worse as I got older and reached my teenage years. People always ask me if I’m upset that I don’t have a relationship with my mom nowadays, but in all honesty – I never have had a relationship with her. I can’t recall a single time I’ve felt wanted or even loved by her, and I truly believe the reason as to why I was never good enough for her was because of my autism. Growing up, it felt like she almost resented me for it. She hated my quirks. All of my quirks and differences seemed to only make my dad love me more, want to spend more time with me, and tell everyone what a ‘huge character’ I was.
I wanted to wear boys clothes ALL the time, girls clothes that weren’t baggy enough felt like they were burning into my skin. My dad would take me out clothes shopping as a child and take me straight to the boys section without hesitation. My mom would literally force me to wear girl’s clothes – over the top frills, skirts, floral cardigans, polar neck jumpers and I would be in agony. By the time I was 6, I already had multiple rounds of speech therapy and couldn’t spell my own name properly, but developed a skill where I could correctly identify hundreds of dog breeds and provide multiple facts just by looking at them. My mom didn’t want to know about my new skill, frequently telling me to be quiet whenever I was excited about a new breed I’d learnt about.
My dad thought my intense interest in canine affairs was the coolest thing ever, and would tell everyone about how gifted I was. I have such a sensitive mouth that I’ve always been ridiculously particular with food textures and when I was young I would go through phases of only eating one food item and refusing everything else. My dad would cater for this without hesitating, my mom would knowingly only cook food that her and my sister would eat and I would go hungry most nights. My mom moved flats a couple of times over my childhood but one thing always remained the same – I spent most evenings in the bathroom, longing to be at my dad’s house again. When I was with my dad I felt loved. When I was with my mom I felt alone.
Growing up, I knew I was different from the other children my age, I could always feel it, ever since I could remember. I don’t remember ever ‘fitting in’ but I’m lucky that I’ve also never really felt a strong desire too. I just never understood why I felt things so strongly that nobody else seemed too, or why certain food textures induced physical pain, or why I became so obsessed with tv shows or collecting things. I found comfort in soft toys and Disney movies, and started collecting teddy bears obsessively- a special interest that hasn’t changed to this day, and now I have over 1,000.
When I was in primary school, my dad brought home my first dog, and it opened up a new world for me. I began studying dog breeds, learning all the facts I could. I felt safe around dogs. When I was around dogs, I didn’t feel nervous or scared. Humans were complicated. Dogs were simple. When I was around dogs, I didn’t have to worry about who I was, or what I was saying, or if I was being too loud, or playing too roughly. Dogs don’t care about that. I know what dogs want from me upon meeting them, and I know what I want in return – friendship, love, affection. With humans, trying to work out what their intentions are is a minefield. I can read a dog’s body language and facial expressions with ease and react instantly, don’t even get me started on humans. Humans are complicated. Dogs are simple.
I didn’t play with toys like the other children did, and I hated to share what I considered to be ‘mine’. I much preferred to line up toys in different orders like my least favorite to the one I like the best, or shades of color or height order. That seemed much more fun to me than crashing cars into each other like the other children were doing. It frustrated the staff at the school holiday club when I didn’t play like the other children. Nearly everyday a child would come over and disrupt my line of toys, or take something I considered ‘mine’ – and it would trigger a meltdown that would always end in me screaming and biting the other child, and any staff members that tried to intervene. It was the exact same every time, someone would disturb what I was doing, I would lose complete control of my emotions and lash out. The staff would be forced to phone my mom. They probably had her on speed dial.
I’d overhear the conversations in the corridor sometimes. ‘We just don’t know how to deal with her.’ ‘She’s out of control.’ ‘Severe Behavioral Difficulties.’ ‘Do you think she might have Autism/ADHD?’ Getting into trouble at clubs was far from a rare occurrence for me. By the time I was 10 years old I’d been banned from swimming lessons, a children’s fitness club, and multiple play groups. My local girl guiding unit joined the trend when they decided to suspend me for a year because I didn’t like joining in with the large group, and would hide under tables covering my ears rocking back and forth instead. They told my dad my behavior was ‘inappropriate’ and to only bring me back in a year once I was ‘mature enough for the group and could behave like the other girls.’
I didn’t understand what I had done wrong, or why no one seemed to want me around, but at 11 years old and already having been suspended from just about every sport and social club in the local area, and having been bought back home by angry neighbors more times than I could count, I began to wonder, why was I so different to everyone else?
I turned 12 quicker than I would have liked and with it some unwelcome changes came about. I left my primary school where they had dealt with every meltdown with a kind and caring attitude, and moved on to secondary school. I attended the local Catholic high school – although I’m not sure why, because neither of my parents are religious. During this time my mom remarried, and we moved into a house together shortly after the marriage. It was in this house where I experienced domestic abuse for the first time at the hands of my step dad, and the neglect from my mom reached new lows. Unsure with how to deal with my turbulent home life and my upcoming GCSEs, I developed anorexia as a way to cope. I’d always been fussy with food and it’s textures and colors, and some days it made me feel better to just not eat at all. There’s been a lot of studies as to why a lot of people with autism develop eating disorders because there seems to be such a strong link between the two conditions.
I spent my teenage years living out of rucksacks and spending as much time away from my house as possible, mainly at my best friend’s house in order to escape the abuse and neglect that was happening at home. Unsure how to cope with everything going on in my mind and my home life, I stopped going to school most days, and when I was there I was so overwhelmed I was having daily meltdowns. To try and prevent meltdowns escalating I would flick my fingers or rock back and forth – my teachers saw this as being disruptive to the other students and I would be told to stop these behaviors. The teachers and staff at my school didn’t even attempt to ask me if I was okay, or needed extra help, or possibly a referral to services outside of school.
Despite multiple teachers suggesting to me that I might be autistic or have ADHD during my school years, they immediately wrote me off as being a ‘bad kid.’ I don’t know why I was shocked, this is what people had been doing to me my entire life. During my last year at school, when my behavior had reached new lows, their way of dealing with me was to remove me from lessons and keep me in a separate building where I could be watched by a teacher away from all other students. It didn’t stop my behavior, and it only pushed me back further behind in my classes. A month before my GCSE exams, the headteacher decided to pull me from mainstream lessons and isolation and send me to the SEN classroom. It was a small room behind the library with three other students and four members of staff. It was here that I did more work and was able to take in more information in a few weeks then in the past few years at school.
A couple of weeks later, my school sent me into my GCSE exams, which I ended up doing in a sports office because of how unwell I was at the time with my mental health. While I did manage to get better grades than I was predicted due to my attendance and behavior, I believe the school allowed me to seriously slip through the cracks. Multiple staff during my time at the school suggested to me that I might be on the spectrum, but never offered me any further information or signposted me to any services. Teachers are with children five days a week. I believe it is part of your duty as a teacher to undergo training to allow you to spot signs of autism and other conditions, and make the relevant referrals in order to help both the child and their caregivers. It seemed the staff at my school did not receive this training, and had there been more training given to them, I would have received more help and assistance at an earlier stage in my education. It was very apparent that the way the staff dealt with me was based on a lack of education and empathy, and because of this I was never able to reach my full potential in school.
After I left school, my mom finally had enough and kicked me out. I came home one day and my stuff was in bin bags on the staircase. I asked her where I was meant to go, she told me she didn’t care as long as I left. I walked to my dad’s house, tripping over the bin bags on the way as they bashed my legs, cars beeping me from the road – the driver’s laughing. When I told my dad she kicked me out because her husband asked her too, he didn’t even hesitate helping me pull the bags inside. I’ve lived with my Dad ever since 16 year old me turned up on his doorstep. After failing half of my exams, I was determined to gain some kind of qualification, but I couldn’t ignore the seemingly obvious – I sucked at education! I attended and dropped out of every college in the local area before looking further afield.
I ended up going to a specialized Animal College, and studying Animal Care for a year, traveling on a coach there and back three hours each day. I’ve never been happier. Climbing off the coach and breathing in the smell of dirty hay, it felt like home to me. For the first time ever, I was in education yet my meltdowns were controlled, and when I would feel one coming on the animals would quickly calm me down. A large percentage of the college was students with learning disabilities, and I’ve never felt safer around a group of people than I did at that college. It was like I could finally be me, without having to hide any parts of me, I could finally be the truest version of myself. I cried for days when my course came to an end and I had to leave, but I managed to do the seemingly impossible – I completed the full qualification and passed the course!
After my stint in animal care, my long term struggles with overwhelming anxiety and large groups of people had been going on for so long that I decided to take myself to see a doctor. It didn’t help that I had Britain’s worst GP who had turned me away on multiple occasions prior to this, and later on, after I received my diagnosis, stood in front of me and told me she essentially didn’t know what autism was. I managed after a solid 15 minutes of begging to get referred to Steps 2 Well-being – the local NHS counseling service that deals with anxiety and depressive disorders. I had a phone assessment a few weeks later and got a diagnosis of generalized anxiety disorder and was offered counseling. I was relieved but this diagnosis didn’t seem to explain the ‘symptoms’ I’d been experiencing for so long.
The therapist met me twice and could see the clear signs that so many people had been missing for all these years. She referred me to the local learning disability hospital for an autism assessment, and 10 months later I got a final diagnosis. Autism Spectrum Condition. The psychologist was shocked it had taken until I was 19 years old to be referred for an assessment, given how many people had suggested it to me a lot earlier. I wasn’t sure how to feel. For a solid week, I hid the report and didn’t mention it to anyone. I was in denial about the whole ordeal, was I really autistic? Had the psychologist made a mistake? I’m not a maths genius or a science expert and I’m not talented or gifted at anything in particular. I wasn’t shy or reserved and I had a large group of friends, I was clearly able to socialize well enough… and then it hit me. The stereotypical view of what autism is and how it presents, I was now placing on myself. The same stereotypical view that kept me from accessing a diagnosis until this point, I was now turning inward towards myself. I couldn’t do that.
I owed it to myself after all this time not to do that. I eventually told my family about my diagnosis, some acted as though they were embarrassed about it, some outwardly argued with me that the diagnosis was wrong, and some just accepted me for who I am. Some of my friends used it against me, as a way to control me, some didn’t look at me any different after I told them than they did before. Over the years I’ve grown even closer with the members of my family that choose to accept me for who I am, and I try to avoid those who don’t. I used to be embarrassed of my diagnosis, as though having special needs is something to be ashamed of. Within the past year I’ve met people who not only accept my autism, but they adore me for it. It’s helped pave the way for me to finally embrace myself.
Unfortunately being autistic does come with a lot of hurdles to overcome almost everyday, and over the years I’ve had some pretty huge ones. I’ve lost jobs purely because of my autistic traits, been in hospital and not been able to identify where the pain is, and because I’ve been too trusting in the past, missed so many red flags with so many people that later went on to abuse me. These are all things I am working on changing, for my own safety and personal progress – but what I won’t change are my other autistic traits. I will no longer apologize for flapping my hands around in public. I will not be quiet about my special interest because somebody has told me to shut up. I will not stop going to arcades when I turn 25 and collecting all of the soft toys for my collection because society says I’m too old. I won’t dress like everyone else because I don’t want to be like everyone else. My name is Gracie, and I’m a lot of things, but above everything else – I’m autistic.”
This story was submitted to Love What Matters by Gracie Thomo from south coast, UK. Follow her journey on Instagram. Submit your own story here and besure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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