It's the end of autism awareness month and we are heading into mental health awareness month, so...
This is a post that I've been wanting to make for a while, but it's been a little hard to put into words. I've been back-and-forth about whether or not I wanted to tell people or just keep it to myself. At the same time, I feel like this is such a part of who I am and being open about it is not just to let people learn about me, but also a way for me to accept myself. Something I never imagined would happen happened: I received an official diagnosis of autism from a specialist clinic on January 6th of this year.
Even though I've been to many therapists over the years, mostly for anxiety, I always felt very hesitant to get an official diagnosis and have a label hanging over my head. It felt like that would mean that I was officially broken and could never fix myself. My mind has definitely changed about it over the years, and I've realized that getting a diagnosis is more about self discovery, getting the help that I need, and giving other people a set of expectations and guidelines for interfacing with me. Kind of like an API doc. :-)
A Brief History
I definitely knew that I needed help and that something was "wrong" with me since I was maybe 10 or 11 years old. I had a lot of issues when I was younger which led to anxiety, self-harm, eating disorders, depression, substance abuse, running away, and a few suicide attempts. I also dropped out of high school, then went back to finish, only to fail miserably in college. Most people considered me to be smart, but at the same time I was very slow in some ways; not academically, but in terms of understanding and processing the world around me.
My whole life I felt like I was trying to copy other people and pretend to be a certain type of person. I would see people in movies or meet them in real life and think they were perfect and tried to copy everything they said and how they spoke. I would save things in my database of potential things to say in the future and then rattle it off in another conversation, but I would frequently end up looking stupid or having people think that I was weird or lying.
Another thing I used to do is make lists of the perfect personality characteristics that I wanted to have and try to make myself exactly like that. The only way I can describe it is that I was trying to make up my own personality by copying other people to try to fit in. But I could never fit in and it was only so long that I could mask. If you haven’t heard of the term "masking," it is very commonly used in the autistic community and there is some more information about it linked at the bottom of this article.
It seems strange to me now that I never thought that was an unhealthy thing to do before. No one told me about this stuff.
I would have these huge conversation trees play out in my mind so much so that I would forget that I actually was participating in real conversations and just freeze. When I was maybe 20 years old, I thought I had improved my social skills a lot already, but one of my acquaintances, sitting next to me on a couch one day, just unloaded on me. She started saying all of the weird and creepy things I do in conversations, like stare at her without responding. I had no idea I was doing that and it made me feel terrible. I realized it was because I was always stuck in those conversation trees in my head. That moment on the couch sparked a drive in me to become the best socialite and conversationalist ever.
That drive led to a lot of ups and downs for several years though. During that time, I used substances as a social crutch. Sometimes, I felt like I couldn't talk to anyone without having something in my system. Most of the time, I would do these things secretly so people would just think that was my normal self. It was an extremely unhealthy way to live, but I didn't know how to handle the situation in any other way. I found that the medication that psychologists had given me when I was younger was incredibly unhelpful, just making me more depressed and wanting to sleep all day. I just wanted to get better and fit in and I really had no idea what to do.
I've tried many things over the years including medication and self-medication, various therapists, self-help books, etc. I could never seem to figure out exactly what was wrong though, and never stayed with a therapist long enough to get anywhere; after the first three or four sessions it just seemed like we were getting nowhere and I would drop off.
At some point, I couldn’t handle it and I felt like I couldn’t pretend anymore. I couldn’t live with how I was. I couldn't just live in fear of having panic attacks, having to pull my car over randomly, sit on the ground so I could breathe, calm down, and stop shaking. I couldn’t live in fear of traveling alone because of my freak outs in airports and foreign countries. I couldn’t handle the stress of changing my routines when things changed in my life. Eventually, I hit a point where I felt like I couldn’t do it anymore. It was such a draining way to live everyday.
Maybe someday I will go into the details of circumstances and events that happened over the years, but I'm going to keep it short for now and skip ahead to more recent years.
Years Leading to My Diagnosis
My life completely changed when a friend of mine at a tech conference looked at me over breakfast and asked if I was autistic. I was so shocked at first I didn't even know what to say. I was just thinking in my head, "No way! What are you talking about?" I also felt deeply offended and thought it was another way for someone to call me weird. I had a very narrow view of autism back then from stereotypes of young boys and people from movies.
That was years ago now and I will never forget that morning.
I think it was several months later that I randomly saw a YouTube video posted by a girl with autism and started to think that she seemed just like me. Of course, once you watch one video on YouTube, the algorithm will keep recommending more of the same type of content, so I started to get lots of videos about girls with autism - both from the perspective of the girls and from psychologists. Eventually, I went down many rabbit holes of YouTube content and decided that I needed to see a professional.
I found a therapist who seemed good and I actually didn't mention anything about autism directly, I just wanted to see what she thought based off of what I told her about myself and my past. She actually brought up the possibility of me being on the spectrum maybe in our fifth or sixth session. I stopped seeing her, though, after about 4-5 months because the bi- or tri-weekly appointments weren't frequent enough; I wanted to see a therapist every week.
I did some research and found another therapist who had a background in some things I had struggled with in the past, like substance abuse, so I booked an appointment and started seeing him weekly. Again, I didn't disclose to him about any prior conversations about autism either, but he naturally brought it up in the course of our therapy after a few months. This really made me get past any doubts about it in my head: I was just thinking to myself that if friends and therapists are recommending this diagnosis to me, then maybe this is the path I need to go down to finally get the right kind of help. It was kind of weird, but since the first friend I mentioned above who asked me at breakfast, several others have asked me if I was autistic because they have people close to them who are and they thought I resembled them.
That is when I started to do serious research. I started to watch a lot of talks by autism professionals and take notes about the content and also how I thought it fit me. Tony Atwood is one of these professionals that I discovered. He's from Australia and has a lot of great talks about autistic people, especially females on the spectrum. If there was any doubt in my head, listening to him really made me come to accept that I must be autistic; it just explained too many parts of my personality and my life.
The idea of actually going for a diagnosis was pretty daunting with having to talk to various psychologists and take written tests. So at first I tried to see if I could get a brain scan in hopes that I could skip the whole diagnostic process. Unfortunately, brain scans for that kind of thing seem to be mostly experimental and still under research. Also, the place I wanted to go to was a hospital a few hours away and it became very booked throughout the waves of Covid.
My anxiety about the process was really high and I ended up deciding to put off a diagnosis because I also wasn't sure I wanted to live with the stigma attached to that label. I didn't know what to expect and was honestly afraid that if I wasn't diagnosed then I would be back to the beginning and was never going to be able to understand why I had the problems that I had.
I used to make other excuses for how I was, like that I grew up homeschooled. At some point I realized that if this sounds like me now, and professionals are telling me this might be the answer, then I should check it out.
I kept going to therapy and trying things, and I was actually able to make it long-term with this therapist; a huge accomplishment for me. It felt really awesome to not quit like I had with every other therapist. At the same time, I felt like I wasn't really getting better and some of the treatments like EMDR weren't really working for me.
Getting the Diagnosis
When I accepted a position at the company that I'm at now around the end of November, I decided that I couldn't wait any more; I had to go for a diagnosis. I was so scared of having any kind of interpersonal problems or just freaking out if I had to travel for work, etc. I couldn't handle the stress, anxiety, or uncertainty of interfacing with other humans without some kind of help. I called a center that specializes in diagnosing adults with autism that my therapist had recommended to me a while before.
When I called, though, the lady on the phone was giving me different options for the diagnostic process and that was very stressful because I didn't know what to do. I could be tested for many different things or I could just be tested for autism. Fortunately, I was able to bring my therapist into the conversation and have him help decide the direction that I should take. I initially signed up for the test for everything, but then was advised to just do the shorter test for autism since I had already been diagnosed with ADHD. I initially felt happy about this, but found out that the test took a full day anyway.
I was able to get an appointment date fairly quickly. They scheduled me for December 16, which happened to be the first week that I was starting a new job. While I was waiting for the appointment, I did talk to some old friends and people who knew me when I was younger or in different stages of my life. I picked their brain for information about my actions and how I interacted with other people. I actually found out quite a few things about myself that I didn't realize before in that process.
My first week of work at this new job was very stressful because all I could think about was that upcoming appointment on Thursday. When Thursday finally came, I took my best friend and roommate of almost five years with me to the diagnosis. I really appreciate them coming with me because that lowered my anxiety a lot. It was also good for the psychologist to interview them and get a different perspective about me.
One thing that I do regret about the weeks leading up to the diagnosis is that I failed to prepare properly because I was overwhelmed with anxiety. I completely stopped researching any type of content about autism and I also didn't compile a final list of points and topics to bring up with the psychologist. This ended up adding a lot of preventable stress to my appointment. It also made me feel like the whole day was in disorganized chaos because I didn't have structure going in.
That day felt brutal. They interviewed me for a few hours and then gave me a series of tests which took more hours and then, finally, they interviewed me again at the end of the day. I felt like everyone was examining me and that I would have totally freaked out if my roommate had not been there with me. That's not to say they were cold or anything like that; they were very nice and accommodating, doing things like putting on ocean wave sounds while I was taking the tests and letting my roommate sit in the interviews with me.
It was an entire workday full of tests with a 30-minute lunch break in the middle where I just went to the grocery store with my friend and we bought all our favorite snacks and ate them in the car. That helped me relax quite a bit.
I left the office that day with a sense of relief to be able to just go back home and hide. My anxiety started to grow later on though. I felt like the whole day had just been chaos with so many questions that didn't seem to all fall in order. The written tests also seemed to have some random questions on them that were totally irrelevant. After the appointment, it took a couple weeks to actually get my results. This was partially because of the holiday season and the psychologist taking time off for a few weeks.
While I was waiting for the results of the diagnosis, I had so much anxiety that I started really freaking out. I actually called the center and spoke with the receptionist and told her that the test wasn't valid because it was in total chaos and nothing was done in order. Looking back, I feel like she must have thought I was crazy. When I'm on a certain trajectory like that, it feels like I just can't calm down and think rationally.
Weirdly, the next week I caught Covid and got really sick. Fortunately, I was vaccinated and didn't have any serious complications. Getting sick did allow me to forget about my anxiety and about waiting for my diagnostic results, so I guess it was kind of a good thing. Although, I had just started a new job and gone through that whole first week of ups and downs and then got sick for two weeks. That was a little stressful because I felt like they must hate me not being able to be productive for the first several weeks. I have been told that this type of black and white thinking that is common in autistic adults.
Finally, January 6th came. I joined the call for my appointment at 1 PM and the psychologist had actually miss-booked the time. I started going down this mental rabbit hole of thinking that she didn't think I was important and that I was annoying and so many other things. I did call the center after maybe 15 minutes or so and they said it was just a mistake. The psychologist was able to join the call a little while later and give me my results.
The way that call played out in my head prior to it happening versus how it actually happened was very different. I was thinking of all these negative scenarios before the call happened and how everyone was going to think I was crazy, etc. But our conversation was actually really nice. She gave me my diagnostic results and helped me calm down and gave me some recommendations for learning more and also for treatment.
Even though I saw this coming for a long time, I was still very much in shock when I actually got the diagnosis. As soon as the call ended, I ran out of my room and just started crying with my roommate. For so many years, I felt like I just couldn't manage life. I couldn't fit in. I couldn't be normal. And getting a diagnosis was like this wave of relief. I felt like I had been hiding a part of my identity for so long and now I didn't have to hide anymore.
I didn't know who to tell right away, but I was already very comfortable with someone at work who handles HR, so I actually told them first over a word-vomited Slack message. He was really nice and said that he wanted to tell the other managers who worked directly with me about it, but would otherwise keep it private. Looking back, I'm really happy that I disclosed that information at work. I definitely think that has helped me work more smoothly at the company because people understand me better, and I also feel like I understand my own needs better now.
I can't say everything has been perfect since my diagnosis. I definitely went through a period of severe depression for maybe eight weeks or so. I had spent my whole life trying to fit in and be a certain type of person only to find out that I was born defective and could never fix myself. My diagnosis made me realize that the idealistic, imaginary me that I had been striving to become was just not possible. Once I started to feel permanently defective, it was very hard to break out of that mindset. Sometimes I felt like I would never get past it. I didn't know how I was going to make it. I hadn't felt depression like that since I was a teenager.
No one prepared me for those feelings. I thought if I received a diagnosis, everything would be automatically better. I was just excited about everything until a week or so after when my mood started to really go down. I did some research and found that a lot of other people experience the same "mourning process" after receiving a diagnosis. I wish someone had let me know before so I could have been ready for it. Thankfully, it didn't last more than a few months. Now, I have mostly gotten past the negative feelings and feel pretty hopeful about the situation.
I was very fortunate the whole time to have great people around me with supportive friends and coworkers. I think if I didn't have support I really couldn't have made it through this year. It is also very hard to explain the rollercoaster of emotions; extremely difficult and also hopeful at the same time.
I chose to disclose it to a few people over the last four months. I was scared at first, but I was met with a lot of positive and supportive responses so that gave me more courage. I'm still kind of shy to talk about it, and it's been causing me a lot of mental stress, so I just wanted to put this out here for everyone to see and so that I could internally get over my fears.
How a Diagnosis Has Helped Me
I think that a big part of this whole thing was that I had to change my own views of autism. I used to think that it was this devastating condition that required full-time care and had a typically male presentation. I was totally ignorant about what autism actually is. Some people with autism require more or less support in life, but it doesn't mean that we can't all have high quality, meaningful lives. A lot of the time, people don't know just by looking at or talking to someone if they are autistic unless they choose to disclose it.
I definitely still have struggles day to day. However, I feel like this is the first time I’ve been able to get therapy that’s been really helpful. I started group therapy with autistic adults and it's crazy how much we have in common with our thought patterns and behaviors. I have been able to make progress in my communication skills and at interfacing with other people since reading so many books and listening to so many talks about autism. This has also helped me in other areas of life like work. I now know what to tell people to let them know about how I communicate and my needs. This is one of the best things that ever happened to me.
I still get stuck in social situations and I have sets of phrases that I say when I don’t know what else to say, but they don’t always make sense to people. Some people call them Gwen-isms. I think by this time I’ve become immune to people making fun of my social skills. I think part of my mourning process post-diagnosis was about the fact that I would never be a great conversationalist like I wanted to be for so long.
I just always wanted to be normal and fit in. No matter how hard I tried I just couldn’t. Now I realize it was because of my executive functioning problems and some other issues related to my Neuro-type. I feel like there’s only so long that anyone can pretend before everything unravels. At this point, with how many mistakes (especially social mistakes) that I’ve made over the years, it’s given me this pervasive fear of interacting with anyone at all. I feel a lot of anxiety leaving the house and talking to people. It’s a lot of effort to go out and feel like I have to pretend to be normal all the time.
I really feel like I found myself throughout all of this and that I found people who are like me. That’s one of the best feelings in the world. I have been able to start accepting myself and my behaviors and forgiving myself for my past. I can be myself more freely now.
Looking back, I can’t help but wonder what my life would’ve been like if I had gotten a proper diagnosis and help as a teenager or even younger. I might not have had to live with so much anxiety and in so much chaos all the time. I might not have self-destructed and taken so many years to get my life together.
It has been very easy for me to fall into the trap of bitterness, thinking about all my missed opportunities and wondering why was I born like this. But I realize that living in bitterness was preventing me from moving forward. I know that all my experiences have shaped who I am today, and I know it’s made me a better person. I’m just trying to take it day by day and accept the parts of me that I used to try so hard to get rid of.
I really don't want to blame anyone else for things that have happened in my life. I have also come to realize that: How can I be bitter, I've made at least as many mistakes in life as anyone I would blame for not realizing I needed help. Really, we just have a system that lets many people fall through the cracks without anyone realizing that they have different needs.
Myths About Autism
I want to to dispel this myth especially: There is no evidence that there is an epidemic of autism. It is also just a natural variation in humans much like any other natural variation in a species. It is not caused by vaccinations or poor parenting as people used to think.
There is also no evidence that more people are being born all the time with this condition. Estimates show that about 2.2% of the adult population is autistic. Fewer people used to be diagnosed because of various reasons like lack of access, women and minorities being ignored, and the changes in the DSM-5 which redefined the autism diagnosis to include a spectrum of people who share similar characteristics. A spectrum means that it includes a variety of people with different characteristics and not everyone presents the same way. The problem is that most people don't understand what autism actually is, yet they can be so opinionated about someone's diagnosis and whether or not they seem to fit the label. I have a list of resources linked below that I have found useful and hope that it will help you understand more about the condition as well.
Another annoying comment I've heard is about how everyone is a little autistic. I want to point out here that it is not even a little helpful to minimize what someone is going through with statements like these. If you want to know more about why saying these kinds of things can be harmful to people, I recommend reading Brene Brown's books in the list at the bottom of this article.
One final thing that is really annoying is when people say "Oh, it really doesn’t affect you that much", "it seems like you’re fine", or just straight up "you’re not autistic". I don’t think these people even realize what they’re saying. They wouldn’t tell someone with cancer or depression "You really don’t have that". What a terrible thing to say to people. How does anyone on the outside know what I’m going through. I had real professionals assess and diagnose me for this and prescribe treatment. Yet random people like to think they know more about me than myself and those professionals. It doesn’t make any sense. It is incredibly rude too. I spoke about that a little bit in a previous article about mental health here.
I don’t see why anyone would try to be a gatekeeper and tell me that I don't have something if it’s good for me and making me happy. I am doing much better in life, so it's really no one else's place to say those kinds of things. If people care about me, they would be happy for me; happy that I am getting better.
I’m really grateful that I had a good therapist who helped me through the process and a great team of psychologists who performed my diagnosis and helped me through the post-diagnosis process. My friends have also been really supportive and that makes me feel good too.
It's weird how people have started asking me over the last few years if I was autistic. I guess maybe since I stopped masking as much; I'm just more myself now.
The autism acceptance movement in the world is a great thing. People's views of autism used to be very narrow and focused on mostly one type of person, but now they have started to realize that autism looks different in each individual and that portrayals in movies or other media represent just a small fraction of the people in the autistic community.
I hope that someday we have the systems in place to properly and accurately screen children for various neurological and mental health conditions. Children could receive personalized help from a young age and grow up to live much happier and more productive lives.
Autistic people today have life spans up to 20 years shorter than the general population. They suffer from more coexisting mental health conditions than other people. And even with a college education and the desire to work, some evidence shows that the unemployment rate for autistic people can still be as high as 80%. That is a very alarming statistic. If any other group had those numbers, I feel like people would be panicking and demanding change. For neurological differences and mental health conditions, though, there’s still little awareness and very few programs aimed at helping adults.
If you have questions about this, feel free to reach out to me. I also have a mental health channel in my discord server, so feel free to post questions there as well.
I hope the links I've provided below can educate you if you don’t know much about this subject. Perhaps you can change your mind about autism as I did.
I hope you have a wonderful week and I wish you the best on your own mental health journeys.
Here are some of the resources I have found the most helpful during this process.
- "The Nine Degrees of Autism", by Philip Wylie
- "Divergent Mind", by Jenara Nerenberg
- "We're Not Broken", by Eric Garcia
- "Women and Girls with Autism Spectrum Disorder", by Sarah Hendrickx, Judith Gould
- "The Power of Vulnerability" and "I Thought It Was Just Me", by Brene Brown
- Know Your Brand of Aspergers or Related Autism Spectrum Profile with Jamie Freed
- Autism in Women: How My Late Diagnosis Allowed Me to Fully Accept Myself
- Aspergers in Girls, Tony Attwood
- Post-Diagnosis Mourning Process
- Camouflaging & Masking in girls with ASD
Community YouTube Channels