IS Late Better Than Never?

Content Warning for mentions of depression and SA.

"You don't look autistic." "You're too pretty to be autistic." "You're just saying that for attention." "But you're a girl!" "Don't say that!"

These are the responses that most autistic women and girls receive when they share their diagnosis with other people. For the longest time, people have been informed that only boys could be autistic. Because of this now debunked piece of misinformation, doctors have often gone without bothering to diagnose girls. Some girls like autistic icons Temple Grandin and Daryl Hannah have managed to slip through the cracks and get diagnosed in the early days, but most of them are only just now starting to piece everything together. It's very common for autistic females to get diagnosed in adulthood. While some manage to get an official diagnosis from a doctor, others can only self-diagnose due to misogyny in the medical field, a lack of financial access to a diagnosis, or a lack of support from friends and loved ones. As more and more women start to discover a side of themselves that they never knew existed, the world of autism is slowly starting to become less and less misunderstood. While we still have a long way to go in terms of total acceptance, hearing these women tell their stories can hopefully shed some light on overlooked areas of the spectrum.

Quick disclaimer before I officially begin; I was diagnosed around the age of three. It wasn't until I was a few months shy of eighteen that my parents finally told me the truth. Why did it take them years to tell me? For one, I was diagnosed in the late nineties. Autism was still highly misunderstood at the time, and movies like Rain Man and What's Eating Gilbert Grape? weren't making things any better. Sure, they introduced mainstream audiences to autism, but they also unintentionally painted autism in a stigmatizing image. Because of stuff like that, doctors had no issue telling my mom that I basically had no future. Most moms would've taken the doctors' word for it, but not mine. She scoured the Earth for whatever information was available at that point to ensure that I had a pleasant future. The only reason she and my dad kept it a secret from me for so long was because they were afraid of how I'd react and how others would treat me. They had to make sure I was in a safe place before letting it all out. The other reason why they finally told me at age seventeen was because I'd be in charge of my IEP (Individual Education Program) once I became of age. I'll admit that I was initially ashamed when I learned the truth, but my proper research on autism and my interactions with other autistic people have helped me wear my autistic pride on my sleeve. I can't really blame my parents for keeping this secret for so long because they had little to no resources at the time. I was also fortunate enough to actually get a diagnosis in order to get accommodated in school, even if I had no idea why I was struggling.

I may have been lucky to receive a diagnosis at an early age and learn the truth before adulthood, but other women on the spectrum have totally different experiences. In this essay, I shall discuss why autistic women often don't get diagnosed until adulthood. You will not only hear about female celebrities who have only recently been diagnosed, but you will also hear from some friends of mine who were diagnosed in the past year or so. My autistic butt would also like to apologize for this long intro. As an autistic person, I normally have a hard time getting to the point. Now that the prologue is done, on with the show!

A few weeks ago, a friend of mine named Amanda sent me a message. I had met her last year when I was in a production of A Midsummer Night's Dream, and just about everyone in the cast and crew had a strong bond that lasted long after the show ended. We were so close that Amanda and some of the cast members surprised me on Opening Night of a show I directed. In her message, she told me that she was diagnosed as autistic in January at the age of thirty-nine (I have her permission to share her age). She called it a "huge relief", and she thanked me for being authentically myself. "You are helping me learn more about myself all the time," she concluded. Since I refuse to be dead serious all the time, I replied with an image of a cake with "CONGRATS ON THE AUTISM" written in pink icing. The rest of the conversation inspired me to write this essay in the first place, so I asked her and another female friend who was recently diagnosed if I could interview them. I'll get to my other friend's story later, but let's finish up Amanda's story first. When Amanda was diagnosed, she cried with relief. Her tears were caused by this long-awaited understanding of why she had a hard time with experiences that were so easy for other people. I asked her if she ever felt different growing up and if her diagnosis affected the way she looked back on her life. "I always felt different," she replied. "I spent a lot of time watching other people and how they respond and act, so that I could "fit in" and respond correctly." Although she managed to fit in most of the time, the pressure to keep up this image led to struggles with anxiety. What Amanda experienced is called "masking", or the act of hiding your autism in order to blend in. I and several other autistic individuals have struggled with anxiety due to masking, so Amanda isn't alone. Right now, her biggest struggle is learning how to unmask after years of practice. As for how her diagnosis affects how she looks back on her past, she explained that she feels compassionate for her younger self rather than embarrassment. The last thing I asked her was if she thought that her life would've been different if she had been diagnosed sooner. She said yes, but she's not sure if it would've been for better or worse. "I wish I had this understanding of myself and this diagnosis years ago," she explained. "But I also wonder, if it had happened in my childhood in the mid 90s... I am not sure. Knowing it was not as understood during that time, I wonder if it would have been a positive experience, like I feel about it now." It may have taken Amanda nearly forty years to finally get diagnosed, but her journey is far from over. I wish her nothing but the best as she rediscovers herself.

Reactions to receiving an autism diagnosis vary. As I have mentioned earlier, my initial reaction wasn't positive. I don't remember how I reacted in front of my parents, but my brain secretly clouded up with negativity. By the end of my sophomore year of college, I was a bit more educated on the subject and had come out of the autism closet to my friends in the form of a one-woman show. Now that autism is more understood than it was over twenty years ago, more and more people are reacting positively to their diagnosis. Some even go as far as to celebrate it as if it were their birthday. One of my favorite disabled creators on social media is a non-binary wheelchair user named Eliza Rain, also known as disabled_eliza on Instagram. Although they don't share their medical diagnoses online, they shared their recent autism diagnosis in October of last year. Their celebratory post included images of them holding up a heart-shaped cake with the words "congrats it's autism" written on it. Their post also reminded their followers that both an official diagnosis and a self-diagnosis are just as valid. The bias makes it inaccessible to many minority groups, which is why the autism spotlight is normally set on white cisgender boys. One of my autistic friends on social media, Rory, is a trans woman. She was diagnosed with autism and ADHD around the age of five back when she lived in Texas. However, the Bluebonnet Trails MHMR program tried to change her diagnosis when she was a teen. They denied her original diagnosis and threw other labels at her like "bipolar" and "schizophrenic". After her mom pulled her out of the program, she graduated high school early and left Texas to escape her dangerously transphobic bullies. Even though Rory was diagnosed as a child, ableists tried to take her autistic identity away from her. Every person's journey to a diagnosis is different, and they deserve respect no matter what they went through.

Like Amanda, many autistic women feel relieved to finally receive a diagnosis because they finally understand why they've been a certain way their whole lives. I've said earlier that Amanda's message inspired me to cozy up in my bed and type all of this out, but I was also inspired by a recent Instagram post about Tallulah Willis. The youngest daughter of Demi Moore and Bruce Willis revealed that her recent autism diagnosis "changed her life". Reading about her happiness understandingly make me excited to see this get covered on social media, but then I groaned when I read some of the comments. Yes, I'm aware a lot of people are unaware that a late diagnosis is common for women on the spectrum, but my autistic butt is easily annoyed by the lack of understanding for autism. I stopped myself from reading too many comments and only looked at the first five or so comments at the top. The first one said, "How is it possible to have all resources in the world and not getting your child diagnosed during actual infancy?" First of all, you can't get your child diagnosed during actual infancy. An infant is defined as anyone under the age of one, and the earliest you can get your child diagnosed is at eighteen months. Second, as I will get into later, girls are better at masking their autism. This was also probably at the time when it was still highly believed that only boys could be autistic, so everyone probably thought that Tallulah was just being cute and quirky. By the looks of the video she posted in which her child self is feeling her dad's bald head, I probably would've thought the same thing, too. The other comment that I want to bring up is one that said, "How does the diagnosis change your life as an adult when it's the life you were always living before?" Unlike the other comment, I took the time to reply to this one. I said, "Because it's very common for autistic women to not get diagnosed until adulthood due to misogyny in the medical field. I was initially ashamed when I found out I was autistic at the age of seventeen, but then I was happy when I realized that it explained a lot about how I was the way I was as a child." I'm sure Tallulah and so many others have grown up thinking something was wrong with them. Once you get that diagnosis and understand what it actually means, you realized that there was never anything wrong with you and you just do things differently.

I'm going to keep my word from the previous paragraph and dive into how girls are better at masking their autism than boys. About four years ago, not too long before I started writing here on Vocal, I wrote an article on a different site called "Why Autistic Women 'Don't Exist'" (I'll leave a link at the bottom for those who'd like to read it). To quote how I kicked off the article, "Women have been expected to look and act a certain way since the moment they're born." I'm not saying that men don't also feel pressured to look and act a certain way, but women have to deal with stricter expectations. Funnily enough, my opening paragraph was basically giving the iconic Barbie movie monologue long before America Ferrera was cast and filmed her Oscar-nominated scene. My point was that girls are already encouraged-if not forced-to look and act a certain way. Since girls grow up learning how to be ladylike and how to transform into beautiful creatures, autistic girls are given an advantage in learning how to mask their autism. They know how to pick up on certain trends and norms, and they practice being the way they think they're meant to be. Some are better at it than others, and although I was definitely seen as the weirdo at school, I ultimately stepped up my game and learned how to be like everyone else. When I finally started to come out as autistic, one lady told me, "But you're so pretty!" I've also received comments from people online saying that I can't be autistic because I know how to take care of myself. Sadly, I'm not the only autistic woman who gets accused of lying due to my appearance. A few years ago, Holly Madison, one of Hugh Heifner's former girlfriends, finally received an official autism diagnosis, even though her parents had suspected that she was autistic for years. Like many autistic women and girls, Holly had struggled with social connections. She once stated, "I thought to myself I've never really connected with a guy my own age, and I have a hard time connecting with anybody my own age, maybe I'm just like this old soul, and I'm meant to be with older people." While Holly received support online, many people were quick to accuse her of lying due to her life at the Playboy Mansion (just to clarify, she just lived there and was never officially a bunny or anything). After all, how can a developmentally disabled woman become attractive enough to be a model and realty star? I've seen comments on TikTok accusing Holly of using her autism as a "scapegoat" and saying that her autism wasn't an excuse for moving in with a rich old man. She never once tried to use her autism as an excuse; she just proposed that it could explain why she prefers older men. Honestly, I think some of the haters are being this way because they're upset that the woman they used to fantasize about was autistic all along. They believe that autism isn't attractive, so they get angry when attractive autistic women prove them wrong. Holly was in her early forties when she was finally diagnosed, and I think it's sad that people wanted to take away her joy by bringing up her past. So what if she used to live with an older man? So what if she used to star on a realty series? So what if she appeared nude in Playboy a few times despite not officially being a Playmate? So what if she's too pretty to fit your stereotypical image of autism? She knows who she is, and there's nothing you can do about it.

What exactly do you do when you find out you're autistic? Do you keep it to yourself for a while until you're ready to tell others? Do you just go about with your life as if nothing happened? If you choose to be open about it, what do you plan to do with your information? In the years after I learned that I was autistic, I slowly busted the myths of autism that I grew up with. After coming out as autistic to my friends in the form of a one-woman show, one of my friends encouraged me to write a full-length play to spread awareness. That's exactly what I did, and my little play later got published after three productions and a couple of awards. Sometime after the play's debut production, I discovered the autism side of TikTok and met some incredible creators. This was the moment in which I started posted videos about autism and really grew into my role as an advocate. I know what it's like to grow up confused and alone, and I wanted newly diagnosed autistics to know that they're not alone. To answer the last question I asked at the beginning of this paragraph, you can take the information and share it with others who are going through the same thing you went through. Christine McGuinnes, an English model and television personality, was diagnosed as autistic in 2021 as the age of thirty-three. Despite already having three autistic kids, Christine grew up without a diagnosis. After discovering just how overlooked autism was in thousands of women in the UK, Christine wanted to spread the word. In March of 2023, she released a documentary on the BBC called Christine McGuinness: Unmasking My Autism. In it, she interviews a bunch of autistic women and girls who were overlooked and misdiagnosed by medical professionals. Fair warning, this film tackles topics like self-harm and eating disorders, which some of the interviewees have dealt with. When I discussed Tallulah Willis's diagnosis earlier in this article, I said that she was probably just seen as cute and quirky as a kid. Autistic women and girls are often written off as cute and quirky, and the truth is that we often try to keep up that image in order to hide something not so cute and quirky. If you were to ask some of my friends and family to describe me, the word "funny" would often get thrown out. They'd probably add that I can come across as too funny some of the time. The truth is that I grew up trying a bit too hard to be funny in order to hide the fact that I was secretly depressed. I couldn't really understand why I was depressed, but I knew that I couldn't let anyone know. In the years after learning about my autism diagnosis, it finally clicked that my depression was caused by my continuous need to mask that I didn't know I had. It was like I naturally felt the need to fit in, and I would get frustrated whenever I did something wrong. I don't know how different things would've been if I had known the truth and tried unmasking my autism sooner, but the depression caused by my masking is exactly why I talk about autism so much. Christine and I can't go back in time and change the ways we grew up, but we can change how future autistic generations will grow up.

I said earlier that I interviewed two female friends who were diagnosed later in life, and now I shall finally introduce you to my other friend. Funnily enough, we are both autistic women who go by the name Cat. I first met Cat a couple of years ago when she directed a musical that a friend of mine was in. I got to talk to her a bit at the cast party, but I didn't get the chance to get acquainted with her until last year. A mutual friend of ours shared a post she made in which she stated that she had been recently diagnosed and wanted to collaborate with autistic artists in the area. I reached out to her, and we became friends. Now she posts nonstop about autism, and I knew that I had to interview her for this article. I asked her the same questions I had asked Amanda, starting with what it was like getting diagnosed. She said that it started when she and a friend of hers questioned whether or not they were autistic. After taking some online quizzes about autism, she had to wait a few months in order to get a formal diagnosis at the age of fifty-three. "It was a series of three steps," she told me. "Initial interview, testing, and delivering of the final diagnosis, which was Autism Spectrum Disorder level one." She felt different growing up, but she couldn't tell me specifically why. "I remember often being pulled out of class for gifted and talented education sessions with other children, but again I couldn’t tell you why I was targeted." While some autistic kids get held back or start late (I had to go to a school for special needs kids before I could start kindergarten), Cat actually skipped kindergarten all together. She learned more quickly than others and picked up on subjects like Math quite easily. Despite doing well as a student, her social life was different. She was very sensitive and cried very easily. She was also easily led into doing things that she knew she shouldn't had been doing. "I wanted to fit in and be accepted by my peers, who I never really felt like I fit in with." Unlike Amanda, Cat looked back on her life once she found out that she could be autistic instead of after her diagnosis. "So many things in my life started to make sense," she stated, "and I checked off so many of the boxes that it wasn't even a question to me." To be honest, I was stunned when I received her answer to my final question; "Do you think your life would've been different if you had been diagnosed sooner?" It started off simple with her stating that college would've been easier and how she could've avoided so many uncomfortable situations. What got me was when she said that she wished she had known that we autistic females are three times as likely to be sexually abused because of our inability to understand social cues. Without going into details, she shared with me that she had been taken advantage of a number of times and blamed herself for the fact that it all happened. I stared and stared at the DM and tried not to cry. Ever since I started spending time with autistic TikTokers, more and more creators have shared their experiences with grooming and SA. Disabled women in general have a dangerously high chance of experiencing any sort of sexual violence or misconduct, and we autistic women can easily get lured in due to mixed signals in social cues. I won't go into details, but I've had similar experiences with men who were too nice to me until I found out what they actually wanted. One of my experiences led to me having nightmares for nearly a year, depicting how it could've been a whole lot worse. This is why I refuse to be too nice when a guy shows interest in me; I don't want to be taken advantage of again or experience something worse. Hearing Cat's story really hit me and reminded me that what happened wasn't my fault. She concluded her answer by stating, "If sharing my knowledge and my experiences is able to help someone come to their diagnosis sooner and learn the tools they might need in order to protect themselves better from predators who can sense an easy victim, that is one of my goals for being public about my diagnosis." I am truly grateful to have someone like Cat in my life.

No one is too much of anything to be autistic. No one is too pretty to be autistic. No one is too smart to be autistic. No one is too feminine, old, successful, trans, gay, chill, sexy, or put-together to be autistic. Autistic people come in all shapes and sizes, especially autistic women. We're not a one-size-fits-all type of coat; some of us are baggy sweatpants. Some of us are bodycon dresses that show off the booty, and some of us are oversized hoodies that are long enough to be mini dresses. I'm a cat onesie with a crop top and shorts hidden underneath. We shouldn't have to all be the same coat to be taken seriously. We're tired of getting shoved inside of the autism closet, waiting for someone to take us out and wear us with pride and joy. You can leave us in a pile of clothes, but we will find a way out of the house. You can remove our buttons and cut holes in our pockets, but we will replace the pain with comfort. You can stain us with doubt and grief, but we will wash it all away. You can give us away, but we will find someone who will treasure us deeply. You can insult us all you want, but we will never go out of style as you flaunt your clown persona. We will learn the truth about ourselves, and we will make sure that autistic girls learn the truth about themselves sooner. Even if some of us don't receive a diagnosis until adulthood, we will spend our whole lives making the community proud. Being awesome doesn't have an age limit.

Link to my article: https://www.theodysseyonline.com/why-autistic-women-dont-exist-2647779485?xrs=RebelMouse_fb&ts=1600879740&fbclid=IwAR1uARhCSryQ3nYcAL0pe7a2t4IZ6bX1p35runWiCK2JdqxllzqlQW7Zn_U_aem_Ae3nXxqpXWhbudJ_Ao50J1GeEdyo7Aq0B8CpUySNwAx0-36U_luk1jNP_FR2iFxVbVnvQpTZCUM0V3S1vyHrZdeR