Sarah is a writer and and full-time working mom. She blogs at To Aspie or Not to Aspie on a variety of autism-related topics. This week she shared her journey to discovering her Autistic identity and how she has learned to self advocate.
How did you become aware of your Autistic identity? What prompted you to pursue a diagnosis as an adult?
I’ve always wondered why I was so different from other girls, but, like so many late-diagnosed women, it was my son who led me to consider autism. Most of the literature written on diagnosing autism is based on the way it is expressed in boys. Once I realized that he checked a lot of the boxes, I made the connection. My son and I are so similar. Could I be autistic, too?
After digging around the internet for autistic traits specifically associated with girls and women, I had an answer. For a while, the self-diagnosis was enough for me. That is, until the pandemic hit. Working a full-time office job has always been difficult, but the pandemic put my company, my job, and my personal life into crisis mode. I dealt with one meltdown after another. The chaos was too much, and I worried I’d lose myself and my job. So, I decided to seek out a formal diagnosis thinking it would, at least, be the first step in the right direction. Now I wished I had sought a diagnosis sooner.
You’ve written that early on in life you learned that you were never right. What were some things you wish your parents/teachers/relatives did differently that might have helped you develop a positive neurodivergent identity early on?
Unfortunately, I grew up in an emotionally abusive household. My parents used my quirks and “weirdness” as fodder for abuse, which only encouraged me to hide myself from the world – and them. Pretending to be as normal as possible – masking – was essential to survival in my house. It helped to minimize the emotional abuse. I learned that being “different” was wrong and shameful. Because of that, I’ve battled depression for most of my life. Autistics live in a neurotypical world and having a safe space to be ourselves is necessary to our mental health. Thankfully, I’ve found that space with my husband.
So, my wish is simple – I wish my parents had accepted and loved me, quirks, weirdness, and all. I hope parents of neurodivergent children never underestimate the value their unconditional love has in their children’s ability to thrive.
You’ve written a post on the challenges of friendships. Have your friendships changed since receiving a diagnosis? If yes, then how so? If not, why do you think that is?
Since the ending of the friendship I wrote about in my post, I quit trying to make friends. I guess I needed a break to recuperate or I’m just tired of trying. Maybe a little of both. Even with the knowledge of my autism, I’m just not sure.
But I’ve discovered that there is a whole online community out there for autistic women – I’m just now learning how to network in it. Through a Facebook group, I discovered that one of my neighbors is autistic! Small world, huh? I’ve also connected with a co-worker who is self-diagnosed. Slowly my world is expanding, again. The change for me is that I’m purposely seeking out other neurodivergent women for friendship.
How do you self-advocate in social settings/in friendships, etc.?
This is a balancing act I’m still learning to feel my way through. Sometimes I find the confidence to speak up about what I need and other times I just muddle my way through. It really depends on the situation.
Even before my diagnosis, I knew there were certain things about social settings I needed to consider. For one thing, I struggle to keep up with group conversations, so I avoid large gatherings, if possible. I stay away from crowds and noisy places. And if I lose track of the conversation, I ask questions or if a comment can be repeated. Most people are accommodating. But I feel like I’m inconveniencing others in holding up the conversation. Although I only recently received the diagnosis, I’ve always been autistic. So, I’ve found ways to work with it.
In an effort to connect with other neurodivergent co-workers, I started an employee resource group. Best. Move. Ever. Those who identify as neurodivergent and those that simply want to be allies working together to educate the rest of the company. While it’s still in its infancy, we don’t feel the need to explain ourselves to each other. If someone needs an accommodation, they speak up and it isn’t questioned. Because I started this employee resource group, most co-workers are aware of my autism.
What tools/traits/resources do you possess as an adult that help you navigate life as Autistic that you wish you would have had as a teenager?
To be honest, a diagnosis would have helped me the most. It is in those teenage years that we start to think about college and careers and relationships. I wonder how much of a difference a diagnosis would have been for me. Would I have chosen a career path more suitable to my neurodivergent brain? Maybe, with a diagnosis, I would have also received the help I needed to avoid depression.
Also, the internet is a valuable tool. YouTubers like Yo Samdy Sam are a great resource as well as Facebook and LinkedIn groups. Reading and learning about other people’s stories helps me understand myself because I see the similarities. For the first time in my life, I read someone’s story and say, “That’s just like me!” It’s exciting and reassuring to know that I’m not the only autistic adult woman out there. I think having access to the internet is essential for neurodivergent individuals. So, these online resources would have been helpful to have as a teenager.
I appreciate your post about fluid identities and language preferences and call to “give each other a break and the space to explore our identities and our world in the ways that work best for ourselves.” What advice do you have for those (both NT and ND) who feel unsure of how to identify/use language around autism for fear of making a mistake, offending people, etc.?
The language we choose has a lot to do with where we are on our personal journey. This makes it difficult to know what language to use when addressing someone.
When in doubt, ask. No one will be offended if you ask for their preference – only if you assume their answer or refuse to listen to their answer.
Ask questions, be respectful, and listen to their stories. When you are open to learning, mistakes are easily forgiven. Don’t speak for others and never allow someone else to speak for you. This advice is good for anyone – neurodivergent or neurotypical.