Is Autism Part of My Identity?

In honor of Autism Acceptance Month, here's how I believe we should look into the way disability impacts individuals.

                                       

It’s usually difficult to discuss the impact having a disability can have on a person.

On the one hand, it often means facing challenges that can last a lifetime. A person who can’t walk is very likely to always use a wheelchair or a walker to move around, a blind person isn’t able to take in the many sights that are a part of most people’s world, and an intellectually disabled person usually can’t learn above a certain level. All these challenges can result in the disabled person having difficulties being fully independent if they don’t get the right support.

On the other hand, people with disabilities can also discover they have certain advantages despite the many challenges they face. For instance, a person who’s blind could have a stronger sense of hearing or touch due to not being able to see things, which can allow them to navigate the world more easily. A person with an intellectual disability might be more motivated to work hard and find opportunities to succeed through programs like Special Olympics or independent living programs, with some even managing to drive or attend college.  With the proper support, such individuals can learn to overcome the challenges that come with their disabilities and have fulfilling lives.

All these different circumstances might make people wonder how they should view disability as it pertains to a person’s identity or well-being. Is it mostly a disadvantage to the disabled person, or do they feel it has unexpectedly benefited in some way? How much do those advantages or disadvantages influence a disabled person’s personality, if at all? Are individuals with disabilities who reach certain levels of success able to do this despite their disability or because of it? And should these individuals be referred to as a “person with a disability” or “a disabled person”?

To examine these questions, I’m going to share some of my own experiences as an autistic person.

When most people meet me for the first time, they won’t notice I have a disability right away. They might notice that I sound a little gruff when I speak, that I tend to move around a little too much, or that my hair looks slightly disheveled, but they probably just assume I’m shy, very energetic, or that I’d been in too much of a rush to get my hair done. If I can make a good impression by talking about a subject that interests me or taking part in an activity that lets them notice what I can do, they might assume I’m just like everyone else.

However, there are ways in which I’m different.

When I was younger, there were often limits over what I wanted to do and what I could do. I struggled with certain tasks that came more easily to other kids, such as tying my shoes. I remember having my mom and other adults trying to explain the process to me as a young kid, even watching a certain episode of Spongebob Squarepants that premiered when I was six which featured a song teaching kids how to do just that, and yet I had a hard time doing this on my own until I was eight. To this day, I’m not the best when it comes to tying knots, whether it comes to shoes or other material like ropes or bags, and I can still struggle with doing my hair sometimes.

I didn’t struggle with speech as much as other autistic people did, but I would sometimes say random stuff in rather incoherent ways, making others not understand I was saying. Other times, I’d bring things up at inappropriate times, which could cause a lot of awkwardness and confusion. As an adult, I try being more careful about when I bring something up, but it can sometimes be difficult expressing something verbally without thinking it over first, so I tend to stammer or word things in awkward ways at times. And since I often have this urge to be completely honest, if I’m not sure of something I want, I’ll often say “I don’t know” or “perhaps” if I must decide something on the spot, even for something as simple as what I want to eat.

I also didn’t like trying new foods, often preferring to eat dry cereal, macaroni and cheese, or plain burgers without ketchup or vegetables, and limiting my more healthier food options to apples and other fruits. And because I often felt hyper, I tended to always be fidgeting, whether it was by playing around with pencils, loose parts of my clothing, or my hair.

 As for something like watching fireworks, forget it. I absolutely hated the cracking and exploding noises they made, and I could not understand why others liked them so much. If I had to go see them, I would have to cover my ears the whole time to make the experience more bearable. It was the same story with balloons, so birthday parties weren’t always fun for me if kids decided to start popping every balloon in sight.

I wasn’t diagnosed with autism until I was ten, and I wouldn’t start learning about my condition until I was about thirteen. When I did, I did think that I met some of the diagnostic criteria, but other things, such as not wanting to be touched by others or not being able to speak at all, didn’t seem to describe me at all.

By then, I was starting to overcome some of my challenges, such as my fear of hearing fireworks, but I was developing certain habits in their place. I developed an obsessive impulse against lying where I’d worry that I wasn’t being truthful enough, and I wasn’t having as much active conversations with my family anymore. Outwardly, I seemed okay to certain people, but inside, I was more distressed than I was willing to admit.

Realizing I had a disability seemed to have a contradictory effect on me. It felt reassuring to know that there was a way to describe what made me different and that it didn’t impact me as badly as it did other people. Yet at the same time, I still felt some shame over this diagnosis, as if it made me stick out from others or as if I could never be as successful as I wanted to be because of it.

However, complete shame has never been something I can give in to. I’d often hear about how some autistic people have special interests, which could include things like dinosaurs, trains, math, the solar system, or music. Some of my own main interests have changed over time, but I now realize that there are two things I’ve always been interested in: stories and facts.

Having had a difficult life growing up, stories of any kind often served as an escape for me. Whether it was through multiple viewings of Rugrats or Arthur episodes, or by reading the many books in the Magic Tree House or American Girl series, absorbing fictional worlds always seemed to help me get through the difficult world I was living in.

As for facts, this often went hand in hand with my love for stories. Both book series I mentioned were full of fun facts for kids, including stories set in Ancient Egypt and rain forests through the Magic Tree House series and the tales of girls growing up during time periods ranging from the Revolutionary War to the Great Depression through the American Girl series.

 In addition, I would go through phases where I enjoyed watching science videos from the library (it certainly helped that these were the only videos offered in one of the libraries I was once a part of) or going over copies of  encyclopedias or the Guinness Book of World Records. Although this didn’t result in me becoming a straight-A student, it did help me gain knowledge in certain areas other kids normally weren’t interested in.

Some might question whether it was really my autism that gave me these strengths. While I don’t think it was my disability alone that helped, one of the effects autism has on me is making me prone to thinking about certain things for far too long, to the point where I’ll sometimes pay less attention to what’s going on around me. This can get serious for individuals who have less self-control, resulting in mental health complications like schizophrenia. However, I’ve usually been able to do this without it getting in the way of having my normal routine, and that could be because I’ve found an outlet for this way of thinking through my writing.

Now I’m going to get to the more challenging question: do I consider autism to be part of my identity?

I will say that compared to other aspects of who I am, my autism does seem to have a bigger impact on my overall identity. To offer a comparison, I also happen to be Hispanic, or to be more specific, Guatemalan American. The way this impacts me is that I know Spanish, I like certain foods such as tacos or tamales, and I have an interest in different countries, cultures, and languages due to my own background. However, I wouldn’t say this has a deep impact on my personality.

 Likewise, I’m also bi, which for me means that I experience some degree of attraction towards both sexes. Yet I don’t normally reveal this part of myself to others in part because I don’t have as strong a desire for sexual relationships as other people do and in part over not knowing what type of reaction I’d get from others. This aspect of my identity doesn’t play as large a role in shaping my personality either.

However, because of the impact autism has on the way my mind works, it has a bigger impact on my personality than either of the other two characteristics I mentioned. I tend to be reserved because of the way my autism can cause me to become absorbed in my own thoughts as well as my struggles to say something clearly to other people. I can also go through anxiety if things don’t go according to plan, causing me to become withdrawn from others. When this happens, I won’t usually have a meltdown, but I might become more quiet than usual or put off doing certain things I’m supposed to do for a while in favor of going through my phone or just daydreaming.

At the same time, I can be very dedicated to the things I enjoy doing, and if I remain productive, I tend to commit to doing them regularly. This dedication has led to several major accomplishments for me, including getting officer positions for several organizations back when I was in community college and getting my first regular job once I finished school. My family has tried making their own plans for me, but I tend to stick more with my own goals first and foremost, which contributed to these accomplishments. And despite many setbacks, I tend to remain optimistic when it comes to my future. I refuse to see myself as a complete failure and always remember that there is much I can do to help improve my own situation, even if it does take some time to see change happen.

So yes, I do believe that autism forms a large part of who I am, but that does not mean that I mainly see it as only a negative or a positive thing. To see disability as a setback can have a serious impact the self esteem of a disabled person and can go so far as to hold back any possible progress they’re capable of making. Yet seeing it as mainly a positive thing can be rather naïve, as this would require you to overlook the many struggles a disabled person can go through and the fact that not everyone with a disability might be capable of major accomplishments despite their condition, as can sometimes be the case with autism.

Instead, the best thing you can do is recognize that a disability can impact people in both negative and positive ways, as can be the case with any other aspect of a person’s identity. If you ever get the chance to interact with someone with a disability, see if they feel comfortable discussing the way they feel their own disability impacts them. You may come to notice that what they share with you could sound similar to what I just shared, with many stories on how their disabilities may have made their lives more challenging, but also the more rewarding or humbling aspects that come along with it.

As for whether you should use “People First Language”, where you refer to someone as “a person with a disability” or “a person with autism”, or “Identity First Language”, where you say “a disabled person” or “an autistic person”, I see this as more of a personal preference for most individuals, and therefore one of those things you should ask individuals with disabilities about. I know that many autistic people, myself included, usually prefer to refer to ourselves as “autistic”. At one point, I disliked the big emphasis on People First Language which some disability activists without disabilities themselves often brought up because it seemed like they were putting their own preferences over what disabled individuals actually wanted, but after thinking about how overemphasizing identity can have some downsides, I’m more open to using both at different times. I’ve even made a point of using some variant of both “disabled person” and “person with a disability” in this essay for this reason.

The more you can understand how complex disability can be for those who are disabled while also remembering how much dignity, worth, and potential they have, the more you can help them live better lives. And the more those of us who are disabled ourselves come to understand that experiences with disability can vary for different individuals and try having empathy for those who might not have it as easy as ourselves, the more we will be able to help not just ourselves, but also others who either have the same or a different disability than we do. This way, we can all help make a difference for individuals with disabilities.