I’m Autistic
Last Saturday, after a very, very long journey…I was officially diagnosed with autism. Since I was young, this has been something that has been talked about in my family as a possibility before, however, many women and girls such as myself (and their families) find it extra hard to get diagnosed, or even just to get more information about getting tested, because there are so many misconceptions about how autism looks different in different people (just do a YouTube search of “autism in women/girls” for firsthand experiences).
As a result, I have gone years struggling in so many areas of my life, having no idea why. 4 years ago, when I was 27, I asked my primary care doctor if he could refer me to a specialist because I thought I might be on the autism spectrum. Without even looking up from his clipboard, he smirked and said, “You have nothing to worry about. You’re perfectly normal.” I wish I didn’t take his word, but I did. I continued with thinking that the issues I was struggling with were my fault and I just needed to figure out how to fix them. I just needed to “do better” and be more responsible.
Meanwhile, I was struggling. A lot.
Now before I go any further, I want to put disclaimers out there:
1 - Autism looks different from person to person. You may read what I say and it may be COMPLETELY different from another autistic person in your life and that’s all a part of it. I am speaking as one person with autism. Among many assumptions about autism, some may think that autism is a mental health disorder when it is actually developmental. Now, I have actually dealt with mental health issues in my life, however, I didn’t realize that there was more to explain what I was going through.
2 - I am by no means a medical professional and am telling all of this from my personal experience. What I’ve listed below is NOT a list of “top 4 things about autism” or anything like that — it’s just 4 things that I have the capacity to share right now, based on my experiences and the challenges I face with how I function in the world. What I share may not be perfectly linear or explained in the best possible way but I am giving myself permission to share what I know, from a place of honesty and courage.
I am so grateful to finally have language for what I’ve been going through all these years and if I could help one other person feel seen, then that’s what matters. If I could help one person who has been blaming themselves or has felt shame for their struggle or has been afraid to seek help, then to me, that’s what makes this worth it.
So here are those four (of many) things, in no particular order, that have been a part of my experience:
1 - Social/communication
Since I was young, I have struggled to make friends or maintain friendships. I have always struggled as I tried to understand social cues and how to take part in all of the little things people do over the course of time to build closer connections with each other. To this day, I will prepare a script for every conversation I am about to have, even when it comes to conversations with people I speak to on a regular basis. I’ll prepare answers to questions they may ask me, and questions to ask them, and even a joke or relevant story to share. This has been one of the main ways that I have been able to try to connect on a deeper level and even though I’m used to it, it takes a lot of time and research and as a result, I am not able to socialize very much because of how much time and energy it takes (outside of pandemic times). I really do love connecting, but it is draining, and I have to pace myself through it.
When I was middle-school-age, I used to read series like “The Babysitter’s Club” or the “American Girl” series just so I could get an understanding of dialogue and phrases to say when I was with peers. Of course, this didn’t always work because these books were written years before the early 2000s when I was middle school age, so the information I was gathering was a bit out of date. As I got older, I tried to incorporate popular movies and in the past few years, books and podcasts on how to communicate effectively just to make sure I could learn how to communicate properly.
I always craved connection while also feeling like there were all of these little unspoken rules about friendships and relationships that I just didn’t know.
How does one go from being a friend to a best friend?
How do you determine when you should text someone versus call them?
What do I talk about with the friend who calls without warning and I have not prepared for this conversation?
How do you prepare for a conversation with someone who says they just want to “catch up?” or “just talk?”
How do you ‘hang out’ in a chill, natural, manner when there’s no established context for the social setting?
If someone texts “hey!” instead of their usual “heyyyy!” - is this something I should pay attention to or is this one of those “chill” things and nothing more?
Questions like this go on and on for me. I make room for them in my life because I really do enjoy connecting with people, but it does take a lot of prep work and leaves me feeling like I can never keep up because I am not able to socialize as much as others, or with as much nuance, especially if wasn’t preplanned or if there’s no established context like, “we are going to get together and talk about this” or “we are going to watch this movie.” This why I have always loved theme parks! It’s a way that I can actually do fun things with others that are centered around very specific activities (rides, restaurants, shows, etc.) and I don’t feel the pressure to have to constantly figure out the context and I’m less worried about what’s expected of me socially because there are other things to focus on.
Some people may hear all of this and think, “it’s not that big of a deal — just live your life!” And I wish it was that simple. But over and over in my life, I have missed certain social cues that tested a friendship. I have failed to notice the significance of a non-verbal gesture and it turned into a miscommunication. Getting some of these little things “wrong” has led to actual problems in my life, so even when I’m not anxious, I still have to spend a lot of time putting different aspects of communication together to make sure I am responding and engaging in a way that makes sense to others.
I often feel like I am stuck at the “beginner” level when everyone else is at “advance.” When I was younger, I thought I would catch up to speed someday, and in some ways, I guess I have, but again, it takes a lot. These are all things that I have studied for years and oftentimes, have struggled to find specific answers for.
One word that comes up a lot for people with autism is “masking.” Masking is a way that many will use to hide, camouflage, or minimize autistic traits to try and blend in and appear “normal” in society. Many of us get really good at copying what others do — copying everything from mannerisms to tone of voice to certain phrases as a social coping strategy so that we can appear ‘normal.’ And for those of us who have been subject to bullying or teasing (for me at least), masking is more than just “fitting in”….it feels like something you must do to survive. Not being able to fit in in society can lead to feelings of loneliness and being ostracized which is never something I wanted. It can also lead to not be able to get a job or struggling to have meaningful relationships in your life. So as a result, a lot of autistic people will mask, and the long-term effects of masking can be incredibly negative and lead to a lot of other issues, and yet, so many of us feel that pressure to be a certain way, and masking is a part of our daily lives, and most people would never know from the outside.
One of many ways that I have learned to mask is when it comes to tone. I don’t really hear the tone in other people’s voices naturally, and I also don’t naturally speak with a lot of tone in my own voice. If you’ve ever heard excitement or concern or in my voice, I am incredibly conscious of how I learned to do that. Every little intonation in my voice comes from listening to others and figuring out when and where the tone is important. I am so used to having to practice this now, but again, it’s very draining.
On social media, I post these little one-minute spoken word videos, and I will rehearse intonation for days to make sure I get it “right.” The reason why I spend so much time on tone is that there have been times where I thought I was speaking excitedly but I ended up sounding angry, or, I was completely monotone and someone interpreted it as rude or cold. I am very self-conscious about that and spend a lot of time wondering if I will be misinterpreted or misunderstood because I missed something and the tone wasn’t “right.”
And when it comes to the tone in other people’s voices, I have to put in a lot of work to make sure I’m understanding them correctly. Because when I focus on what they’re actually saying, I don’t catch the tone, or the significance of the pause between words, or all of the other nuances of storytelling and conversation. However, when I AM focusing on all those things, I run out of time and space to listen to what they’re saying. I say all this say: communication takes a ton of work. There is a lot of prep work (and rest afterward) required for me to be able to function socially. And for years, I would just end up telling myself that it was on me to be able to navigate all of this and figure it out on my own. I pushed myself socially because I felt like I had to prove that I could be “normal,” and I could function socially like everyone else.
Even though I had knowledge of autism and at different points wondered if I was on the spectrum, I have still dealt with tons of societal pressure that is often put on women and girls to be a certain way socially. Even being an artist with a social media platform, I often feel like there are tons of unspoken expectations as to how you should be able to show up each day. For years, I have admired how other creators have been able to share their lives and engage with others in a way that I couldn’t seem to figure out how to do. Thankfully, I have been able to find my own way of engaging with others online that feels very special and authentic to me, but at the same time, that fear that I’m not doing it “right” still lingers. There are so many times I want to respond to something happening in the world in a comment section or in my own tweet or something, but by the time I get my thoughts together, no one’s talking about it anymore.
There are even more layers to this when it comes to the issue of being a Black woman with autism and I’m still trying to find a way to even put all of that into words. There are so many stereotypes in society as to what a Black woman should be like in the world, and even when you know on an intellectual level that you are so much more than a stereotype, that pressure is real and can have a profound way of how your own view of yourself.
I truly believe that a lot of what I’ve struggled with in this area is at the heart of what I write and create on a regular basis as an artist and poet. When I write something like ‘you are worthy of support right here as you are,’ or ‘rest’ or ‘you belong here just as much as anyone else’ — I am writing for the pressures that other people feel, and also, myself.
2 - Sensory Issues
Since I was young, I have always struggled with a lot of sensory issues. Everything from the texture of clothes to the brightness of light to the volume of music had a profound impact on me. It has always been difficult for me to hear conversations if loud music is playing in the background. As much as I love watching movies, I do have to close my eyes quite a bit due to the brightness of light. The smallest things can lead me to sensory overload which has a great impact on how I function. I go to bed really early each night simply because, by about 6-7 p.m., there’s been way too much input. I need silence and darkness for a long time.
As I grew up, it didn’t go away, even when I tried really hard to not let these things affect me. One example of many that I could give is that a few years back when I was a touring musician, I would always have to pull my in-ear monitors out of my ear because the sound was too much. For those who aren’t familiar with in-ear monitors, these are like a special kind of headphones that are designed specifically for live performances to control sounds and keep you in sync with the rest of the band/music. If you’re playing in a large room or with a band, they are incredibly helpful for the performance, and without them, you could end up playing something at the wrong tempo or out of sync with everyone else — this would happen to me all the time because the concentrated sound in my ear led to sensory overload. There were times where after soundcheck, I was on the verge of tears and ready to take a nap because of the sensory overload. But I kept going because 1, I do really love making music, and 2, something in me felt like it was my responsibility to get this under control. At night, I would get to the tour bus as early as possible and just lie in my bunk and stare at the wall in darkness and silence until I fell asleep.
I have stories like this for all of my senses covering the entire course of my life. I have a major sensitivity to so many little things, and when it comes to making art and music, there are times where this can actually be a strength for me (which is why I love making these things). A strong sensitivity to color or light or sound can come in handy when you’re making things. However, it’s not so great when there’s a line of people behind me in line for self-checkout line at the grocery store wondering why I am taking so long to finish the checkout process…because they have no idea that the reason I am taking so long is that I can barely hear what the ‘self-checkout’ voice is telling me to do with the volume of the background noise feels much louder than it should be and the brightness of the fluorescent lights is wearing me down to the point that it affects the speed in which I move, even for basic tasks.
Now that I know I deal with sensory processing issues, it all makes sense. Simple things take longer for me to do if it’s loud or too bright, and I can get overwhelmed and feel tired pretty easily.
As I mentioned a little bit before, I do have to say that I am glad that I have been able to find art and music. I cannot tell you how much of a difference it makes to have a safe, creative space where I can control the brightness of a color or the intensity of a guitar strum or a drum. I’ve talked a lot in the past about how making things brings me peace and this is a major reason why are turn to these things all the time.
3 - Executive Functioning
This is a super oversimplified definition but, executive functioning is a set of skills that we use to be able to manage in daily life. This is a really broad category if you will, and I couldn’t possibly cover it all here, but this has a lot to do with organizing, planning, starting and finishing tasks, keep track of pace, etc. Having issues with executive functioning is not something that only autistic people deal with, but it’s definitely been a challenging point in my life, and also, a place where I have felt shame because of how much I struggle with doing basic things. Even something as simple as brushing my teeth or washing my face at night feels like a daunting task because, by that time of the day, I am so physically, mentally, and emotionally drained. That act of walking up to the sink to do this simple thing takes a lot for me. I cannot do another activity for a very long time after taking a shower, because of everything that happens on a sensory level in that process. The same is true with answering emails, phone calls, texts — and it goes on and on — the light of the screen, the sound of the phone vibrating on the desk — I am hyper-aware of all of it, and as the day goes on, it drains me more and more. I used to think that maybe the sole issue of my struggle was because I was tired, or working too much, or, after I had my son, I assumed it was postpartum struggles. Now, I see the overlap with everything else I had going on. Even on low-stress, days off where I am resting or doing things I love, I can only do so much.
To be completely transparent, this is still a major area for me of learning how to not blame myself for things that are hard that seem like they should be easy. I am amazed by people who are able to put together a quick meal or take a quick call while they’re just stepping out of the gym. Or even people who are able to record an Instagram Story, talking into the camera, with other things going on in the background. I often feel like an alien from outer space observing humans for the first time: “How are they doing this?” It’s such a mystery to me. And also, unfortunately, something I pressure myself about. I do feel like I am getting better, but for the longest time, I have put way too much pressure on myself for feeling like I need to function in a way that I couldn’t…and I am learning it’s okay to be different in this way.
4 - Special Interests
One thing that is common for a lot of people on the autism spectrum is to have a special interest(s). Special interests are different from hobbies in the way that –– and I will just speak from my own experience –– special interests help me function and even understand the world around me. There was a time where one of my dominant special interests was Lord of the Rings. I read everything by Tolkien and every possible commentary I could find on his work as a way of trying to understand humans and how the world works. When I was 19 I studied abroad in a place where Tolkien lived and I even associate certain parts of the city with what I knew about his time there. Doing this helped me regulate emotionally and not get overwhelmed when I was living in this new city (in a new country) and trying to navigate school and social situations like a “normal” student.
It’s hard for me to talk about my other special interests because, to be honest with you: I have been teased, quite a lot. It’s very hard to talk about things I’m actually interested in because to others, they may seem too nerdy, weird, and I am often afraid that I will talk about too much, for too long, or with too much passion.
Again, I am only talking about my experience so please be sure to not compare what I’m saying to someone else on the spectrum. Someone else with autism may have a completely different relationship with their special interests and how they share them with others. But for me, that has looked a lot like holding back. I feel like as a society, we’ve gotten a little bit better at letting people be into different things that they’re not supposed to like according to stereotypes, but when I was growing up, Black kids were still being stereotyped and teased for liking fantasy novels or cosplay or anime, etc (and even though I’m not a kid anymore, I’m sure this still happens today). This is an area where I am hoping to be more gentle with myself. It’s definitely a process. But even sharing that Lord of the Rings story above was a huge step for me and I don’t think I’ve ever talked about that publicly!
III
Again, this is just one story, but it’s my story, and I’m learned to own it. I have struggled throughout my life, and I can honestly say this experience of getting diagnoses has ultimately left me feeling supported and like I have permission to breathe just a little bit more, knowing that there are explanations for my experiences and the struggles I face.
After giving me tons of information about my diagnosis, the specialist I have been working with ended by saying, “….and it’s not your fault.”
I immediately burst into tears.
For years, I internalized the message that this was all my fault and it was on me to “fix” it so I can function like I felt like I should. And now, I can see, this is who I am. It comes with many challenges, and also, a unique experience that I have somehow also been able to find beauty and joy in, even before I had the language of what was actually going on. I’m still figuring out how to talk about this, but ultimately, I do feel like I can sincerely say: I am grateful.
And before I end this, I want to mention what actually led me to pursue a diagnosis. Telling my own stories in a linear fashion is not a strength of mine, and I also struggle to remember the “right” details, but here’s what I can share with you that I can remember at this time.
This is what led me to get a diagnosis:
TikTok.
Literally. It was Tiktok. I randomly got a video on my feed of someone sharing their experience with finding out that they were autistic as an adult. I don’t remember whose video I saw first, but these are some of the creators I initially started following and listening to on Tiktok, and then, shortly thereafter, on Youtube:
Alexandra Pearson
Paige Layle
Tyla Grant (YouTube)
Chloé Hayden
Not too long after this, I just begin researching specialists in my area that saw adults with autism. Thankfully, I was able to find one specialist, and in my area, there were not very many. I did have one virtual appointment with another therapist who I thought was a specialist at first, but I had misread their bio and definitely felt a little embarrassed when we had a whole appointment that was ultimately not a good fit. However, thankfully, I proceeded to Google once more and found one of few specialists in my area.
And right before I had my first appointment, I got a comment on one of my Instagram posts from Jenni Chapman (@aliandjenni) who mentioned being autistic in her comment…I was so grateful that she shared this in her comment because that led me to DM her and we were able to talk about this process and she shared her journey with me. Since then, I have been following a lot of other autistic creators and learning from them.
It’s scary putting your story out there because autism is often misunderstood and people can be hurtful, due to ignorance or meanness. My hope is that autistic people are able to get the support and love they need in a world that may not always understand who they are.
I want to encourage anyone out there who is wanting to learn more to seek help and also listen to other autistic people. There are so many autistic people out there doing the work of educating and helping others and I am very grateful for them. You’re not in this alone, and I’m so grateful that I’m learning that. And I also just to say a huge thanks to my family and friends who have been very supportive of me in this process and I am aware that not everyone has that. No one should feel alone or unsupported in this which is why I wanted to share.
Thank you for reading,
Morgan
Here are a few other YouTube videos I recommend (there are many more, but these are just a few that came to mind right now)
What Women With Autism Want You to Know | Iris
Women and Autism. Towards a Better Understanding | Sarai Pahla | TEDxMünster
Autism symptoms in GIRLS