Perspectives on Neurodiversity
Earlier this month, we had the pleasure of communicating with an adult who presents on the Autism Spectrum. Let’s call him Joe, per HIPAA. Joe is an adult who was not diagnosed as a child but has later identified himself as someone who falls on the spectrum. The purpose of this blog post and asking Joe some pretty personal questions is to bring awareness to the community of Autistic adults, generate a platform for first-person experiences to be heard/read, and bring more compassion/empathetic understanding to people of all backgrounds/upbringings/development.
In addition, we feel it is important to not alter Joe’s answers in any way. Therefore, this blog will be laid out in question/answer format. We hope our readers find this to be a genuine and authentic method of presenting this information.
When did you first realize you may be on the Autism Spectrum?
I had always had a suspicion I was "different" because of remarks I heard from my teachers and my friends about how I would do things in peculiar ways. For example I would take things extremely literally. I also didn't understand when kids in school didn't want to play with me because they would say I was annoying. The feeling only grew throughout high school and college where I always felt like I was two steps behind everyone else socially. As if everyone else knew the rules and I didn't. So I would try to observe what people did and emulate that, but I never did it perfectly and it caused me a lot of anxiety, sadness, and heartbreak because of people misunderstanding me or rejecting me. I thought something was "wrong" with me. Through pure chance I stumbled onto an article about Asperger's Syndrome (I understand the term is problematic now; same with High-functioning, but I'm just describing what I read) on Wikipedia and then suddenly everything clicked. Here was something that described me to a T. So this was when I first realized I could be on the spectrum.
How do you feel that ASD has affected your everyday life as a child? Teenager? Adult?
As a child and teenager I just remember being frequently confused by how people would act and how they would react to me. For example if they asked me a question I would be very honest, and that would offend some of them or make them upset. I would also just make observations and say them out loud without thinking if they were appropriate to the current situation, but didn't understand why people thought I was strange. Social interaction was always the hardest because I really craved it but was pretty bad at it. Although I am an introvert, I do love connecting with people and this was always difficult. As an adult I think I have done a decent job of "masking" (but it is exhausting!) in most social situations, and because my day to day usually involves my job (software engineering) which I am passionate about, my hyper-focus and tendency to be technical, literal, and often uncompromising when it comes to being "logical" tends to go unnoticed because it is frequently pertinent to discussions.
What did your parents say when you told them you discovered you have ASD?
They didn't really understand it at first because it was an entirely new concept. ASD isn't really known that well among Indian people. But now that they know, they're making an effort to learn about it to understand me.
What advice would you give to parents who may just be finding out that their child has ASD?
It's ok to feel anxious about it or overwhelmed, but the main thing to realize is that there's nothing "wrong" with your child. Being on the spectrum is simply a different way of being human. A different way of thinking about the world. A different way to experience reality. It is not wrong. It just so happens that the world is built and geared towards the "default" and so your child may look out of place. But it's only because places haven't been built with them in mind.
What advice would you give to professionals working with autistic individuals?
Patience and honesty. I can say that personally, I don't respond well to disingenuous behavior or people trying to "play games" instead of being forthright. It only contributes to my anxiety and makes me lose respect for the individual because I feel like they don't respect me enough to be straight with me. Also all autistic people are different and so each of us have different things we are sensitive to. So just keeping an eye out to see if we're being bothered by something and asking about it would help. Don't be surprised if they may not be open about what it actually is, because autistic individuals have been conditioned to believe that their discomfort in a world that wasn't built for them is an "inconvenience" and they just have to power through it.
What advice would you give to a teenager/young adult that has ASD?
It gets better. And it IS so much better today than when I was young! If it is something you can do, I would also suggest therapy because a lot of ASD people also have trauma they dealt with and would need to process. I would suggest checking out social media groups for autistic people because it really helps seeing and hearing about other people like you and makes you feel less alone.
What do you do for a living? How does being on the spectrum make things easier or harder for you (or both)?
I am a software engineer. It actually helps me because my ASD along with my ADHD helps me hyper-focus because writing code is my passion. Systematic and logical thinking is also useful for me because it helps me decompose complex systems into smaller parts and build a picture in my mind about how they all fit together.
If you could change one thing about the world to make it a friendlier place for an autistic person, what would it be?
There are so many things, but maybe a consideration for sensory overload. Open office plans, for example, are literally the worst for people with ASD or ADHD because there is way too much going on and it is overwhelming. So maybe spaces to unwind or calm down can be helpful. Also, maybe just a general understanding that the way ASD people behave is not "weird" or "wrong".
How do you feel the neurodiversity movement has impacted you?
The main thing it has done for me is to make me feel like I am not alone, and that there is nothing "wrong" with me. While my ASD gives me disadvantages, many are simply due to living in a world that wasn't structured with us in mind. It has helped me be more kind to myself and more forgiving of my past awkwardness.
What else would you like to tell us?
Just that I am so glad and happy that there are people like you looking out for ASD individuals and helping them navigate a world that is frequently confusing and illogical. That you engage in activism for them and support them and let them know they are not alone and they have allies. And that you let them know that there is nothing wrong with them.
We would like to give a special thanks to Joe for being so candid and allowing us some insight into his life!
If you are someone with ASD, or know someone with ASD, we hope we’re able to bring you a sense of community. Also, if you have any first-person experiences to add to this topic, we would love to read them in the comments!