‘You’re a problem child.’ After 18 years of being taught to hate myself, I received a diagnosis.’: Woman with autism shares self-acceptance journey, finds strength in service dog, ‘She saved my life’

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“My name is Rho, and I’m 20 years old from England, UK. I have an assistance dog named Lyra, a golden Labrador who is by my side 24/7 and helps me to manage my disabilities and improve my quality of life. Since I was very young, I’ve always known something about me was different from my peers, but until I was 18, I never understood what that thing was. I spent the majority of my primary school life and halfway into secondary school being heavily bullied for the way I acted, with absolutely no idea why.

According to them, I cried too loudly all the time over the ‘smallest’ things. According to them, I’d make ‘unusual’ and ‘weird’ movements, like flapping my hands, to express happiness or distress. According to them, I was a ‘difficult’ and ‘awkward’ child who gave up too easily, had ‘not just a short fuse, but no fuse at all,’ and couldn’t learn things in the conventional way. I was the problem child of every class because to them, me being bullied was an inconvenience, my common crying episodes were annoying, and my increasing amount of absences from school was bringing down their perfect attendance average. (Yes, unfortunately, this is actually something I was told by the headteacher of one of the two primary schools I attended.)

Courtesy of Rho M.

It took 18 years for me and my mom to realize what any of the schools I went to failed to recognize, and what both professional counselors I’ve received support from throughout my childhood failed to notice, despite their training and despite the indicators being so incredibly obvious. After 18 years of being taught to hate myself, I received my diagnosis. I found out I’m autistic, and the way I acted, and still act, was not my fault, and I’m certainly not alone. Being autistic is nothing like the portrayals you see in the media or on TV—the stereotypes don’t help the fact children are slipping through the net and struggling because of it.

I grew up with very few friends (oftentimes none), struggled to learn in the classroom environment, and was constantly bullied by not just children, but by my teachers too (three at my first primary school, two at my second—including the headteacher, unfortunately). Teachers should be the ones you trust and learn from, not the ones that bully you. I was constantly punished and humiliated for making mistakes in the classroom, and then punished again when I started to cry because of the sensory overload of their angry shouting. This can really mess you up as a child, and it certainly had long-lasting effects for me. I’m still struggling with the effects of their unfair punishments, which have manifested as PTSD and awful fear of authority. This impacts my life to this day—it affects my life at university, and also my own independence.

Courtesy of Rho M.

I still often recoil at hearing the words ‘crybaby,’ ‘crocodile tears,’ ‘freak,’ and ‘awkward,’ even when they aren’t directed at me, and I have significant struggles talking to teachers and asking them for help without panicking. It’s safe to say I was conditioned to believe I was the problem. That the way I learned, and the way I naturally interacted and reacted to the environment and my emotions, was wrong—and worthy of punishment or mockery. I, along with many other autistic people, struggle with understanding non-autistic social cues and body language, so this intensified my experiences even further and was another target point for bullying. Children used to mock me for missing sarcasm, which they would purposefully aim at me, so they could laugh when I misunderstood.

They would make me cry on purpose because they thought it was funny. They would pick at me for entertainment because they were bored and they knew they could get a reaction out of me. So, on top of all of the sensory struggles schools presented to me, I had both children and teachers pushing me to my limits and punishing me when I failed to hold it together. All I wanted was a friendship group, but more often than not they would pretend to be friends with me as a joke, and then reject me for a reaction. It was also common for them to bully the children who occasionally chose to play with me, purely because it was me they were spending time with.

Courtesy of Rho M.

Over the years, the teachers just accepted the bullying. I can’t count how many times my mom went to the teachers. I remember how they became almost irritated when it was brought to their attention, and when my name came into conversation. To have any hope of making friends, I learned to copy and script my mannerisms and beliefs to match those around me, to become a carbon copy of the typical person by repressing any of the autistic traits and natural personality traits that showed through due to fear of bullying or not fitting in—which, in the end, resulted in completely losing my sense of who I was and my own opinions. I also developed self-hatred, anxiety, and depression at a young age, and struggled to socialize with anyone out of fear.

They stole away my ability to be excited, my enthusiasm, my confidence, and my personality. None of all the bullying I received was ever my fault. It took me until now to accept this. No child should have to go through this. The only solid and supportive influence I had was my incredibly caring mom, who I will forever be grateful for. To be brutally honest, there is no way I’d still be here today if it weren’t for her. I can’t thank her enough. (Love you, Mom!) The way I reacted, and still react to my environment and emotions, is due to sensory processing disorder (SPD). This is incredibly common among autistic adults and children and refers to our brain’s different ways of processing the external and internal senses.

Courtesy of Rho M.

For me personally, this makes me incredibly sensitive to loud or complex sounds, bright lights, certain textures of food and fabric, and incredibly strong smells. It also causes me to have extremely low pain tolerance and makes it very difficult to tell when I need to drink or if I’m thirsty. However, this can widely vary, and not one autistic person’s sensory experiences are the same, as both sensory processing disorder and autism are wide and diverse spectrums. Autism is also the root of my over-empathetic nature and heightened emotions. While this can be a struggle, it is also a blessing because I can experience positive emotions much more strongly than non-autistic people. The same goes for SPD—positive sensory experiences, like listening to music or touching a fabric I like—are intense and beautiful, and I wouldn’t ever want to be ‘cured’ of it, for that reason.

Autism is an integral part of my personality and is inseparable from me, and the majority of autistic people also feel this way—hence why there is such a movement against the practice of suppressing autistic traits (which isn’t possible, by the way—just traumatizing). Yes, we do struggle, often a lot—but I truly do believe this is mostly down to living in a world built with non-autistic people in mind. If autistic people were granted the accommodations, acceptance, and inclusion we deserve and taught healthy ways to cope with it all, we wouldn’t struggle anywhere near as much. All of the bullying directed at me as a child was due to my autism and the way it portrayed itself, and I would not have struggled or still be struggling had I not been treated in this way. I wish I had been taught to accept my differences, and received support for sensory struggles—not taught to, ‘Just deal with it, you’re overreacting.’

Courtesy of Rho M.

I had to teach myself how to accept and manage my own sensory needs, which was incredibly eye-opening for me and my mom and has helped us both to understand why I’ve struggled with things in the past, and how to help me with the things I still find difficult due to SPD. I also had to reteach myself how to self-regulate and ‘stim’ again (stimming refers to repetitive movements commonly done by autistics to express and regulate), which was incredibly difficult. It brought up many memories of the mockery and punishment I had received for stimming as a child. It felt so forced and unnatural at first because of how much it had been suppressed, but now, 2 years later, stimming to help regulate and express my emotions and sensory needs feels more natural than it ever did. It is an integral part of autistic people’s way of coping. We have our own natural coping mechanism, yet are made to stop doing it because it ‘looks weird’—but then get punished for having meltdowns? Of course we’re going to have meltdowns if you don’t let us regulate our sensory overloads and emotions!

My mental health has improved significantly since allowing myself to flap my hands and jump around when I’m happy, and stim with sensory items when I’m getting stressed. I have invested in sensory toys and aids for my own mental wellbeing and have accepted no matter if it seems childish or odd, it’s what helps me cope. I have every right to do whatever it may be to help my mental wellbeing and disabilities. One of my absolute favorite memories of being with Lyra is sitting on my bed with her, using one of my stim toys, and her being incredibly curious about it and playing with it with me. It’s a special moment I’ll forever cherish because it shows how far I’ve come in life to be able to have this experience.

Courtesy of Rho M.

If you know anyone who is autistic, be they a child or adult, please do the right thing and don’t give them the same experience I had. Please don’t isolate them, bully them, or suppress who they really are and the ways they cope. We don’t want to be ‘fixed’ or ‘cured.’ We want to be loved. We are disabled only because our neurotype is the minority, and the world is built for the majority. Help us find ways to thrive as autistic children and adults, not ways to make us suppress ourselves to fit in with the crowd and appear neurotypical—because we never will be. The latter will only lead to breakdowns and awful mental health and self-image and self-hatred. It’s like trying to force a cat to act like a dog and suppress all its natural instincts and expressions—autistic people’s minds are physically different from those of non-autistics.

You wouldn’t punish a dog for wagging its tail when it’s happy, so why do the same for autistics who flap their hands out of joy? Love us for who we are. I can’t even put into words how much my mental health has improved since my diagnosis and self-acceptance as an autistic person, and since I’ve allowed myself to continue expressing myself and not fighting the traits I was taught so cruelly to suppress as a child. After my diagnosis at 18 years old and a difficult breakdown at college, we began toying with the idea of getting an assistance dog to help me with the challenges my autism, SPD, and PTSD presented to me day-to-day. The idea came about due to the psychiatrist who diagnosed me. I was struggling so much during the diagnosis session she decided, because I like animals, to bring her dog in to help keep me calm.

Courtesy of Rho M.

It was then we realized dogs have a very special and calming effect on my anxiety and overload. It was because of the dog’s presence I was able to continue the session and speak to the psychiatrist when previously I was struggling to get a single word out. Fast forward to August 2019, a year and a half after my diagnosis. Mom and I had been thinking long and hard about the responsibility of owning a dog and had done a lot of research into assistance dogs and the process of getting one. In the UK, there are little to no charities that provide assistance dogs for autistic adults (the average age cut-off seems to be around 10 years old—which is frustrating because if anything, autistic people struggle more as we grow up due to independence pressures and adult responsibilities, with little to no support besides family members if we have access to them). Luckily, though, in the UK, it is legal to train your own assistance dog if you have the means to do so, and this is the route we chose.

Courtesy of Rho M.

This was the best decision we could have made because it meant I was able to choose Lyra from a tiny 6-week-old puppy, and bond with her each week until we were able to take her home. I firmly believe this is why we work so well together, and why our relationship is so strong. 19 months later, Lyra is now on the cusp of being fully trained, and I simply cannot express how much she has turned my life around! She has truly made such a difference and is allowing me to live more independently, and cope with sensory overload and meltdowns in much safer ways and with much less recovery time than before. As cheesy as it may sound, I love her with all my heart and more and can’t imagine life without her. Day to day, Lyra helps me with a wide variety of things. These are known as assistance dog ‘tasks,’ and are what the majority of her training works toward, alongside her manners when out in public places.

Courtesy of Rho M.

These tasks are also what separates assistance dogs from pets, and gives them the access rights that they have—as these tasks are what helps their disabled handler to live a more independent lifestyle. There are such a wide variety of tasks dogs can perform, and assistance dogs can come in all breeds and sizes—these are choices based on every handler’s individual needs. Lyra helps alert me to incoming sensory overload and stress-induced panic attacks, as well as providing a type of sensory stimulation called deep pressure therapy, which is actually scientifically proven to help reduce the impact of and stop panic attacks and sensory overloads! It can also help those with disabilities that cause fainting or dizziness symptoms.

Lyra also knows how to retrieve items for me at home or from supermarket shelves, put them in the basket, or carry them for short distances. All of these tasks help me to be more independent and allow me to manage my overload symptoms before they progress into a panic attack or meltdown.

Courtesy of Rho M.

Another very important task she knows is how to interrupt my self-injurious behaviors, which are uncontrollable actions that often happen when I’m experiencing severe sensory overstimulation or meltdown. She is very persistent with these and will lick my face and cuddle close to me until this has subsided, and this has had such a positive impact on my life so far. She is also a great source of love, affection, and company when bouts of depression hit. We have now started the final phase of her training, which is, in my opinion, the hardest task to train, and this is what we call ‘light guidework.’ When I get overwhelmed by emotions or overstimulation, I can become incredibly disorientated and freeze up or shut down. Teaching Lyra some guide tasks, such as finding the exit, finding a specific person or place, and simple directions will really make a difference to my ability to get to safety when I’m struggling to function.

Courtesy of Rho M.

She won’t learn all of the road safety usually required of full guide dogs, but the tasks mentioned are the ones I personally find incredibly useful to help with my disabilities. She does, however, know her ‘curb tether’ task, which is where she will prevent me from walking into a road unless I give the command to cross. This will stop me from getting injured by cars when I’m too overloaded to think clearly enough to check for traffic. Training Lyra hasn’t been easy by far—it was a huge challenge both me and my mom took on together. Without the help of my mom, I highly doubt I would have succeeded alone. There were times during her adolescence where she was just too strong and rebellious for me to hold on the leash, times where I was just too mentally exhausted from university to cope with the training, and times where I just couldn’t face going outside.

Courtesy of Rho M.

These were definitely the roughest parts of her training—from around 7 months to 14 months old—the typical age for teenage tantrums in dogs! But we worked together and stuck it out, and with a huge amount of effort, we came out the other side, and my goodness, it’s so rewarding! One of the highest points of our journey has to be the first time we did a trip to the supermarket independently—supermarkets have always been one of the biggest stressors and triggers for sensory overloads, but thanks to Lyra I was able to complete and enjoy an entire shopping trip to Asda without any help! It was so nice and liberating to be able to just calmly take my time and browse, not only for what I needed but just for enjoyment. I’ve never enjoyed shopping, but thanks to Lyra, I can finally enjoy myself when shopping independently instead of being stressed.

Courtesy of Rho M.
Courtesy of Rho M.

Oftentimes, autistic people are left ostracised and isolated due to being misunderstood and deemed ‘too different.’ We can find it very hard to make friends due to anxiety and struggling with social cues, but more often than not, we find it much easier to make friends with those who are also autistic and have the same interests as us. The struggle comes with finding those people, and this is another area in which Lyra has really helped me. Thanks to her, I now have a really great friend who shares similar experiences to myself, and also has an assistance dog of their own. We often do our weekly shop at the supermarket together for moral support and enjoy talking about our dogs and other things we have in common. The dogs are also great friends—they love to work together and have even more fun when let off in the field to play!

Courtesy of Rho M.

Lyra gives me the confidence to be myself and let go of a lot of the anxieties I have around being social, as I know she is always going to be there for me if I suddenly need help or get overwhelmed. It is also nice having a friend who has similar experiences to yourself because it’s easier to understand each other and be understanding of each other’s needs when out and about. Without Lyra, my disabilities are not visible to the public, so she also acts as a silent signpost of my disability, so people don’t judge me when I’m struggling because they can see I have a reason. This also takes a huge amount of anxiety away from being social in public and being with a friend.

Courtesy of Rho M.

Lyra has brought me out of a life of isolation, overstimulation, depression, and anxiety, and into one where I can enjoy myself and be much freer in who I am, what I can do, and places I can go. She gives me courage and motivation to try new things without fear of mistakes and to give things a go that previously triggered panic attacks. She has given me access to positivity and happiness again, and my life would be so different now if I had never met her. Next year, she will be attending university with me (if it wasn’t for COVID, she would’ve begun uni access this January), and I can’t wait for the opportunities she will help me access in the future. She is more than just a dog—she is my playmate, my helper, my cuddly pillow, my best friend, and most importantly, she is part of my family. Assistance dogs save lives! I couldn’t be more thankful for her if I tried.”

Courtesy of Rho M.
Courtesy of Rho M.

This story was submitted to Love What Matters by Rho M. of the United Kingdom. You can follow their journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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