Have you ever wondered if there was something else going on with you? Something else affecting you that you were not aware of? Well, I felt that way.

Ever since I was young, I have always struggled with socializing with others. I was always pretty quiet, shy, and reserved. I have always been pretty introverted and anti-social. Even though I did have friends, I still struggled interacting with others. Heck, I still struggle with that now. For the longest time, I always just attributed that to my experience living with cystic fibrosis — not realizing it could be something else entirely. 

As I was growing up, I did not get as many opportunities to interact with my peers due to being in and out of the hospital. My hospitalizations started during the summer when I was in second and third grade, so I ended up missing the last days of school (though I would often miss the first days of school as well), thus missing crucial time to interact with everyone, to form new bonds, and to rekindle old ones. By the time the second day rolls around, everyone has already formed the groups and cliques, thus making it harder to form friendships unless you already have them. No one wants to feel like an outsider or the third wheel of the group.

So this led me to not being able to socialize as much growing up, on top of having some issues with that even before the hospitalizations and homeschooling. At first, I didn’t notice any issue making friends because I knew many of the kids and we were cordial with each other. Although now I wonder, how much of my relationships were actually us being friends? How much of it was them feeling sorry for me because I was always getting so sick? Did they just tolerate me? 

In college, one of my goals — aside from getting my associate’s degree — was to work on my social skills. So, I decided to try and spark conversations with people (usually from my classes) with varying results. 

I did start to make some new friends as I progressed in my education, but then I started to notice something. Most of the people I started to become friends with were on the spectrum. At first, I did not think too deeply about it since it just seemed more like a coincidence. However, I do remember stumbling across a video on YouTube discussing 10 signs that you might be on the spectrum. One of those signs was making friends with other people on the spectrum, which I did not realize I was doing until 2022.

One time, my two friends and I were discussing our first impressions of each other. I don’t remember much from our first encounter, but their first impressions of me were that they thought that I was autistic. This shocked me, since they both came to that conclusion upon first meeting me. Learning that was like an epiphany for me. Since then, I spent the next two years trying to find out more about autism, and eventually sought a diagnosis for it. While I was doing research, I also came across information about ADHD, so I decided to look into that too. 

My mission became to seek a diagnosis. I spent basically two years finding somewhere in my area that took my insurance that can help me, but most of the places were either closed, were for children, or were for psychiatric treatment or therapy, not diagnosis.

Finally, during the fall of 2023, I found a Northwell Hospital where I could get the process done. I had to wait until March 2024, and it was only for an ADHD assessment, but I settled for this because it was an office close enough to where I live that took my insurance. Plus, they said they could help me find somewhere to get an autism assessment. So everything was looking good until I had to schedule my bus to get out there. I use a disability bus to get around. It takes me to and from my house for only $4 per trip, otherwise, it would cost $40 each way for a rideshare.

My bus arrived much earlier than my appointment time, so I had to wait a couple of hours before going in. But I got tired, hungry, and distracted and missed my appointment after showing up 12 minutes late. I was absolutely frustrated by the whole thing. So out of desperation, I went to the nearest emergency room to get some assistance in finding other places I could be seen. They were actually able to help me out, and I scheduled a new appointment at a nearby office. However, I was still depressed and frustrated, something I would not get over until my actual appointment happened.

Then finally, I was able to get the answers I was looking for. After years of not knowing what was wrong with me or why I was the way I was, now I know why. I was diagnosed with autism and ADHD.

Looking back, the signs were always there. I used to stim a lot when I was younger. In fact, I still do that now. For example, I used to scratch the walls in my house when I was younger. Interestingly enough, I only did it at home and I was sort of self-aware that it was not normal. So at some point, I actively tried to stop it — which I was able to successfully do. 

Now, instead, I chew on my clothes as my new form of stimming, which I absolutely hate. Many of my good shirts and outfits are ruined. Whenever I get nervous or stressed out is when I start doing that. Even now I am doing it as I write this. 

I will also do things with my hands, such as do the motions of stretching my hands like a workout, without fully doing it. I clap my hands sometimes if something isn’t working or is taking too long to work. 

I will listen to the same song over and over again for hours. I will even go so far as to look for the song if I don’t know the name of it. If I can’t find the song, I will get really upset. It will ruin my day, much like losing a game or competition will ruin my day. 

As you may see, I can go extremely in depth with particular topics of interest in excruciating detail, while other times giving one word or one sentences answers and responses to things I don’t know much about or don’t care about. This is one of the main reasons why I don’t like small talk. I just don’t see the point of it. I much rather talk about something of substance rather than what people usually discuss during small talk.

Likewise, I hated eating things that felt weird in my mouth, which might have added to my issues gaining weight. I was a very picky eater when I was younger because of how the textures of certain foods felt in my mouth. I struggled for the longest time to learn how to drink from a cup. I was stuck using straws because I could not grasp the concept of sucking the liquids in without irritating my teeth, as embarrassing as it is to admit that.

I even struggled to blow my nose properly. This was something that probably would have benefited me greatly to learn sooner, especially since I wound up having to get nasal surgery when I was about 12 years old. Basic things I just could not get the grasp of until adulthood. 

It did not help that I was so sickly growing up. In fact, I think that is the reason why I did not catch this sooner. CF was the main priority. I was just trying to stay alive. Now that I am on Trikafta^® and my health has improved, I have been able to step back and reassess things.

For example, I realize I suffer from a lot of anxiety. Some of it may be trauma from my CF experience, and some of it might have to do with my autism and ADHD. It might be a mix of both. It’s hard to tell where one ends and the other ones begin. Whenever I am really stressed out, whenever I really feel trapped and backed into a corner with no way out, my body literally shuts down like a computer or phone losing battery power. I actually fall asleep in those cases.

I get distracted very easily and daydream, which is why it took me until recently to learn how to drive. I was also afraid that I would not be focused enough to do it, as there are too many things to worry about and focus on all at the same time. Even now as a new driver, I need to focus specifically on driving. 

I am also very forgetful. I often forget people’s names quite easily. I can also forget what I am doing in a middle of doing it. Sometimes, it’s hard for me to think or formulate a sentence because I often feel like I am having 120 thoughts per second. When I am about to say one thing, a new thought will emerge as I am talking, making what I am saying out loud incoherent. It might sound good in my head, but it comes out as a jumbled mess. 

I also have terrible eye contact. It also adds to the brain fog whenever I am forced to maintain it as it ironically ruins my concentration. I originally wrote it off as CF brain fog, or maybe stress and anxiety, or even trauma or some form of fight-or-flight response — but it could also be autism, ADHD, or all of the above. 

Since my diagnosis, I have started a new journey to discover — or rather rediscover — who I am. I’m finding out what works for me and what does not, and how these things affect my experience dealing with CF and CFRD.

Getting a late diagnosis for any illness or disability is hard, especially when it feels like it was hiding in plain sight. I do wonder sometimes if things would have been different if I had discovered this sooner. Would things have been easier for me? Would I have been able to get the help that I needed? Well, I can still get all those things now. It’s not too late.

Maybe things would have been different, maybe not, who knows. What I do know is that everything happens for a reason and things happen when they are supposed to happen. So as I began this new chapter in life, I will embrace all of the good, bad, ugly, and other things that come as I rediscover what makes me, me.

Interested in sharing your story? The CF Community Blog wants to hear from you.