STORY TIME: How I got diagnosed with Autism
skip to 🎀 if you don’t want to read the backstory !
Preface!
Up until about 5ish years ago it was not common for women to be diagnosed with autism later in life or in general. Boys tend to get diagnosed waaaay earlier in life than woman are. Mainly because high functioning or low needs autism presents far differently in girls. This is relevant!
Okay so basically my entire life i have felt very different than other people. I always describe it as the entire world being included on some kind of inside joke and i am the only one left out.
I displayed A LOT of symptoms very early in my life. As a baby i skipped certain development steps (i stopped napping all together at 1yo) and as a toddler i had aversions to clothing textures and foods. The best example i can give is my aversion to milk of any kind which i still go through to this day. When i was like 4 my parents would mix Ovaltine into white milk and heat it up, they would tell me it was hot chocolate to trick me into drinking it bc at the time i had no idea how hot chocolate was properly made. They could not get me to drink milk. I also had to get shots of antibiotics instead of liquid medicine because i would throw it back up or spit it out. These are not the only symptoms i showed at the time and there are more that i experience these are just examples.
But that was just early in life. As a child and teenager i struggled socially with making friends and having common interests with my peers. Not to mention that kids my age did NOT enjoy me! Until i was in 4th grade and my doctors put me on adderall i was a hot mess express. I could not understand the issues that people were having with me. I couldn’t tell when i was making them angry or sad or mad. I was impulsive and said and did whatever i wanted. I got in trouble CONSTANTLY at home and in school. Adderall changed this as it literally altered my brain chemistry and since my adhd was being managed i was able to mask for the first time in my life.
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At the age of 8 i was diagnosed with severe adhd, at 12 i was diagnosed with severe chronic depression, and at 14 i would get the additional diagnosis of generalized anxiety, oppositional defiant disorder, and generalized mood disorder. From 8yo on, i would be heavily medicated and get biweekly therapy. My freshman year of school i missed nearly 80 days and had to be put on medical leave due to the fact that i had to be sent to a therapy facility.
I was diagnosed with like a million different things before i was even old enough to vote. Instead of taking me off my meds and testing me professionally for everything i could’ve potentially been suffering from, i became a victim of poly pharmacy. I was on tons of meds that each had side effects and then they would medicate me for said side effects. They diagnosed me with and medicated me for literally everything besides what was actually the root cause of my behavioral issues.
Flash forward like over 10 years to 2021. I was having a debate with my mom about something i cannot for the life of me remember now and she was getting very heated. I didn’t understand why she was getting mad at me but she was communicating very aggressively. By the end of this debate, she screamed at me for the first time since i was a teenager. She told me that there was “something wrong with me” and that i needed to go back to therapy and get back on psychiatric medication.
For reference, i had been on psychiatric meds and gotten therapy from the ages of 8-19. While i was in college i completely stopped my Adderall, Zoloft, Buspar, and Clonodine- cold turkey. Because i was sick of having to change the person who i was at a chemical level in order to make other people happy.
Anyways, after that blow up i decided i wanted to go back to therapy. I had seen a few tiktoks of women talking about how they were diagnosed with severe adhd as kids and when they were retested they ended up being autistic. I had been curious as to whether or not i could be on the spectrum for a long time as one of the things i would get teased about in middle and highschool was for “acting autistic”. And i had already been asked by autistic people i knew whether i was autistic or not. Which always made me feel some type of way. When i was 16 i had brought this up to my therapist at the time as a possible explanation for why i had behavioral issues and sensory issues. She had told me quote, “You will never be diagnosed with autism because you’re too old and you’re female.” Which was ACTUALLY INSANE TO SAY NOW THAT IM THINKING ABOUT IT.
So, in 2021 i looked around for suitable therapy offices and found one that looked promising. It was owned and ran by women plus they took my insurance. I gave them a call and told them i was looking to be retested for my learning disability and would like to pursue therapy in relation to it. They point blank said that i needed to make a visit with a neuropsychologist and get retested to be positive that i have the disorders they would be treating me for.
They referred me to a neuropsychologist near me and i made an appointment with them. I made it clear that i suspected i was autistic and undiagnosed. They told me that it was not common practice for them to test someone my age but that they lost definitely could do it.
The testing was insane. I was in the office with the neuropsychologist from 10am-2pm. I was told to bring my own beverages and snacks as they would not be provided for me. The testing wasn’t anything new to me. I mean, some things were, but the IQ test and some of the puzzles were familiar from tests i had been given for adhd. It was incredibly invasive though, more invasive than any mental health questionnaire or testing i had been through before. She essentially had to learn my entire life story and family history. Details of any abuse; emotional, physical, or otherwise. And the mental health history of my immediate family.
A few weeks later i would receive the results from my testing. It was October 17th 2021 at 8:30am when i opened that envelope (yes ofc i remember i have freaking autism). I was getting ready for work when my mom dropped it on my bed, saying it came the day before. I couldn’t have really prepared myself for the contents of it though. There was an entire packet, with my entire life story, and the results of every test administered.
I had been diagnosed with Level 1 Autism or Aspergers depending on who you’re talking to, generalized anxiety disorder with an acute social phobia (so like social anxiety ig), and adhd.
IMMEDIATELY i started crying and ran to my moms office and gave her the packet. When she saw my diagnosis she started crying and apologizing. She felt so guilty that she had no idea and thought she was a bad mother for not knowing. It isn’t her fault though, because autism is not common in women and most girls who are diagnosed early in life have severe autism. Anyways, i was so distraught because up until this point i thought i was literally crazy. Like i genuinely believed that there was nothing actually different about me and that the way i felt and thought and behaved was just me being a bad person. Even when i pursued testing, i assumed it would just come back as adhd and anxiety and at worst a personality disorder. The entire time i’ve been alive and sentient i just assumed i was an asshole by nature. This was the point in my life where i finally realized that there was nothing wrong with me, i was just undiagnosed.
I started getting therapy immediately and started the process of unmasking. It has been really hard since i had spent most of my years pretending to be someone else to make people happy with me. I realized that most of my personally was just different bits and pieces i had stolen from others and replicated in my own life in order to avoid scrutiny. But 2 almost 3 years later i finally feel like myself. I understand how to communicate with others much better and i’m getting better at empathizing with others. My biggest hurdle now is tackling facial expressions, tone of voice, body language, and ofc maintaining eye contact. But i have finally come to terms with myself and it feels amazing.
IF YOU MADE IT TO THIS POINT! thank u for supporting me beautiful. it means so much to me that anyone at all would even care to have read this.
Wow, reading your story really resonated with me! It's so powerful to hear about another woman's journey to a late autism diagnosis. For so long, autism was primarily associated with boys, making it incredibly challenging for many of us, especially women diagnosed with autism in our 20s, 30s, or even later, to get the right support. Your experience with misdiagnoses and the struggle to be understood is something so many can relate to. If you’re reading this and wondering if your own experiences might point to autism, especially if you identify as a woman, know that you’re not alone. Many of us have spent years "masking" – unconsciously or consciously suppressing our autistic traits to fit into a neurotypical world. This can lead to exhaustion, burnout, and a feeling of always being on the outside, just like you described. What often gets missed in women are key signs that don't fit the typical male presentation. For example, intense special interests might be dismissed as hobbies or passions rather than a deep, focused engagement. Sensory sensitivities can be subtle, like an aversion to certain fabrics or perfumes, or even being overwhelmed by bright lights or loud environments. Socially, we might struggle not with a lack of desire for connection, but with understanding unspoken social rules, navigating small talk, or maintaining friendships due to miscommunication or emotional burnout from masking. My own journey involved realizing that my 'anxiety' or 'mood swings' were often my body's response to sensory overload or social exhaustion. If you're considering seeking a diagnosis, here are a few tips I've learned along the way. First, try to find a neuropsychologist or diagnostic center that specializes in adult autism, especially in women. Not all professionals are equally informed about how autism presents in different genders and ages. Second, gather as much historical information as you can. Childhood reports, school records, and anecdotes from family members can be incredibly valuable, even if they seem insignificant. Things like intense childhood interests, unusual play patterns, or difficulties with change can be important clues. The diagnostic process can feel invasive, as you mentioned, but it’s crucial for painting a full picture. Remember to be honest about your experiences, even the ones you’ve learned to hide. And once you have that diagnosis, it’s not an end, but a new beginning. Unmasking is a process, not a switch. It involves learning to understand your own needs, setting boundaries, and allowing yourself to be authentically you, which is truly freeing. Finding a supportive community, whether online or in person, can be a game-changer as you navigate this new chapter. It's about self-acceptance and building a life that truly suits you. Your story is an inspiration for many of us on this path!
Thank you for expressing yourself and sharing lovely, helpful for a lot of people to hear these words & not feel alone🤍🌸