Long Island Behavior Analysis Conference

8 Things I Wish I Knew Before My Autism Diagnosis at 22

At the age of twenty-two, I was diagnosed with high-functioning autism, commonly known as “Asperger’s Syndrome.” On the autism spectrum, high-functioning individuals with autism generally don’t have developmental delays that are common in other parts of the spectrum. High-functioning autism is marked by difficulties with social interaction, sensory sensitivities, repetitive routines, and difficulty reading social cues. Many children are diagnosed at a young age, allowing parents and teachers to provide those children with tools necessary for development, and provide assistance with learning “normal” social behaviors. For many women, like myself, diagnosis doesn’t come until much later in life – sometimes into late adulthood. Many psychologists and sociologists believe this is primarily because girls are socialized in society much differently. Girls and young women are better at masking their atypical behaviors and are better verbal communicators, allowing for better interactional skills.

I am one of many women diagnosed with high-functioning autism in adulthood — far outside my developmental years. For me, my diagnosis (and my “new” life) came at the age of 22. For some women, it doesn’t come until late adulthood, if at all. These are some of the things I wish I knew before I received my diagnosis later in life. They’re also the things I want my friends and family to know now, because I was never able to express them effectively before.

 

  1. You know just how much other people mean to you — but they don’t.

 

Before receiving my diagnosis, my close friends and family had a negative image of me. In their eyes, I was sometimes rude, I said inappropriate things at the wrong times or I said something honest when it was best to tell a little lie. I’ve been told that I don’t care enough about my friends, that I push people away and even that I don’t love my family. This couldn’t be farther from the truth. In reality, I love and appreciate most of the people in my life to an almost unhealthy extent. My diagnosis gave me the life-changing reminder that you need to tell people you love them and to show as much appreciation as you feel.

 

  1. You’ll find an amazing companion to share your life with, but it’ll take time and effort.

 

I was lucky enough to have my loving, neurotypical boyfriend at my side before, during and after I received my diagnosis. As one may imagine, we have a lot of struggles that are directly linked to my autism: communication issues, sensory difficulties and sometimes needing time to myself. As I mentioned above, I also have to remind myself to show my appreciation for him, which is sometimes as simple as remembering to ask him how his day was. However, our problems aren’t so unlike other couples’ that we can’t work through them — it just takes more consideration and effort. You’ll find someone, too, if you’re romantically inclined (but you might not be!). You’re just as capable of finding love as anyone else.

 

  1. If you never reach out to your friends, your friends will never reach out to you.

 

When you’re feeling overloaded and just need time to yourself, it’s really easy to skip out on plans. You never want to disappoint your friends, so sometimes you don’t reschedule… because you might have to cancel again. Before you know it, it has been years since you last spoke to them. Be honest and upfront if your plans change, and put effort into connecting often.

 

  1. You’re not “crazy.”

 

I suffered with mental health concerns for most of my life before receiving a diagnosis. I struggled with suicidal thoughts, self-harm, mood swings, debilitating depression and even health problems brought on by stress. I was previously misdiagnosed with a myriad of mental illnesses and medications never worked. I thought I was a lost cause until I received my diagnosis. Now I have coping strategies and a community of people to turn to when I’m feeling overwhelmed or depressed.

 

  1. You’re not weird.

 

Are you obsessive? Super into animals or classical literature? A band most of your friends don’t care about? You’re not weird. Those obsessive interests are a perfectly normal part of your diagnosis. You care more about a single topic (or handful of topics) than most people do about any of their hobbies. You’re awesome, and you can harness that intense focus to do a lot of good in the world. Make art, write books and inspire others.

 

  1. You’re not lazy or unintelligent.

 

I struggled to hold down a job and stay in college full-time before receiving my diagnosis. I now know that this was because of sensory overload, social exhaustion and executive functioning difficulties. In other words, I couldn’t juggle real life as well as other humans. Choose your jobs carefully, practice time management and take time to recharge at the end of the day.

 

  1. You’re not ugly for dressing comfortably.

 

This one is mostly for the ladies, although it can spread across all genders. You’re not any less feminine for dressing comfortably because of your sensory issues. I’m often perceived as lazy and not “girly” enough, when I just dress for comfort most days. You’re beautiful no matter what you wear and don’t let society pressure you into thinking otherwise.

 

  1. You’reyou. And you’re wonderful.

 

Like me, you might be a mess most days. You may not be friends with your diagnosis right now. However, your diagnosis is a manual to living a more successful, fulfilling life. Use your strengths, know your weaknesses and work on the social aspects you struggle with. It’s so worth it.

 

Taylor Raines is a 23-year-old writing & rhetoric major at the University of Central Florida. After receiving her diagnosis at the age of 22, she’s dedicated her professional career to studying high-functioning autism from a gendered/sociological perspective. To contact Taylor, please email taylorraines@Knights.ucf.edu.

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