“So if you encounter someone with an invisible disability please have compassion, patience, empathy and be understanding when we may say or do things that don’t seem ‘normal’ or we need alone time to rest or cannot work as much as some people because of our disability. We’re just trying to find a place in the world that wasn’t built for us.”
This week’s post comes from Amy J, a disability, mental health and social justice advocate who lives and works in the San Francisco Bay Area.
I was in my mid-30s when I was diagnosed with depression and anxiety. My other diagnosis was changed from schizoaffective disorder to autism spectrum disorder recently at the age of 41. I’ve always known I was different and never quite fit in.
As a child, I cried a lot for no good reason. I would much rather make color charts, read or line up my stuffed animals than play outside like my brothers and sister. A bully would single me out on the playground because I was alone. I didn’t like going to elementary school and would fake illness to get out of it. I’m sure this harmed my ability to socialize and ability to learn the rules of being a neurotypical child. I didn’t exactly have good role models at home where I can learn such skills. I’m pretty sure my dad is autistic because he has communication issues and issues expressing his anger. My niece also got diagnosed at 14.
As a teen, I was a pretty quiet kid. I would connect with others based on their music interests and always had different friends every year. I spent a lot of time in my room, alone listening to my favorite radio station and collecting magazines, articles and fan club memorabilia related to my favorite bands. Music is one of my special interests because it won’t leave me like people tend to do. Other ways I connected with others was my love of The Peanuts Gang. People I barely knew would give me things with Snoopy on it that I amassed a large collection.
College was where I started to make real friends and as an adult, I finally started to figure things out socially, although I have been called abrasive, abrupt, blunt and direct because sometimes in large groups I would interrupt trying to hear multiple conversations or be overloaded with so much going on I would shut down. I tend to not be able to read people’s emotions or read a room very well where I offended people unknowingly that friends would drop me because of something I said or did. (They also didn’t communicate this to me or I would’ve tried to rectify this behavior). Now I ask people to let me know if I’ve said or done something offensive so I can correct it or apologize and try to make it a habit to do better. Neurotypicals want us to read between the lines when many of us are incapable of that. Just like Brene Brown says, “Clear is kind.” Most offenses are really just misunderstandings and I just want to be understood. These are all common characteristics of women with autism but since they’re so subtle we’re usually just put in the weird or different bucket.
Finding and keeping a job was always tough for me. While I was great at communicating with the written word, my lack of small talk and getting down to business right away didn’t exactly put me on the list for promotions. I was fired from several jobs or other jobs would cause me to burn out or bore me to tears. While my other friends were moving up in their positions and earning more money, it was stagnant for me. It wasn’t until I was under an enormous amount of stress that led me to have a really bad psychotic break that led me to intense therapy and a diagnosis of major depression with psychotic features and generalized anxiety that the pieces started to fit.
After speaking more to my therapist about my communication issues, unstable relationships and hard time with empathy, I thought I might’ve had borderline personality disorder or even narcissistic personality disorder. He recommended I get re-evaluated and after a long waiting period, I took a five hour test and more waiting for results, I finally had a diagnosis – autism spectrum disorder. Since most testing is geared toward boys, girls often get misdiagnosed or diagnosed later in life. I didn’t even think of this as a diagnosis but the more research I did and the more people I talk to who have it, it makes sense. I finally have found my tribe.
While many people think I don’t have it because I’m mostly neurotypical passing, and they’ve never seen me have a meltdown or my form of stimming which is plucking my eyebrows. My communication skills have always needed work especially when it comes to navigating conflict and it has taken me well into adulthood to finally find and understand real friendship. Thank goodness for Dialectical Behavioral Therapy (DBT) which has saved me in more than a few occasions. I’m still learning everyday how to do better. I wish I had known about my issues sooner so I don’t feel like I have missed out so much in life. Some may not want or need an actual diagnosis but for me it was freeing to know that I wasn’t damaged or the only one struggling with my issues. I finally understood why I struggled in areas most people don’t think twice about.
So if you encounter someone with an invisible disability please have compassion, patience, empathy and be understanding when we may say or do things that don’t seem “normal” or we need alone time to rest or cannot work as much as some people because of our disability. We’re just trying to find a place in the world that wasn’t built for us. If you really want to be an ally, follow influencers with different disabilities and of course listen to us and treat us with the same kindness and dignity you would with someone without a disability. Remember we’re different, not less and there’s nothing about us without us.
If you want to chat or connect, send me an email firstname.lastname@example.org