Sara is a 27-year-old Autistic woman with a degree in Intercultural Communication who taught English in Japan from 2014-2017. She was officially diagnosed with Autism Spectrum Disorder in 2017 after several years of self-exploration and research. She now writes her blog, “Seeking Sara,” where she explores life on the Spectrum. She enjoys reading, writing, swimming, and music. This week she shared her experience receiving her Autism diagnosis, her socialization preferences, and how she’s adjusted to her new Autistic identity.
Your diagnosis is fairly new. What was your understanding, awareness, or conception of autism before you received a diagnosis? How has this changed?
Yes, very new! While I started on a journey toward diagnosis
back in 2015, I was formally diagnosed with Autism Spectrum Disorder in late 2017 at the age of 27. I’m still processing what it means to be Autistic.
Before my research and subsequent diagnosis, I had a very stereotypical idea of who Autistic people were: usually young, male, white, nonverbal, etc. And in fact, those few Autistic people I’d met fell mainly within those categories. (At least the people I knew to be Autistic. I now know that you can’t always tell if someone is on the Spectrum or not.)
I really didn’t know of anyone close to me who was on the Spectrum and assumed that what I saw in the media and through my limited interactions with Autistic individuals was accurate. I also used to differentiate heavily between Autism and Asperger’s and fall into the trap of thinking it wasn’t “real” Autism.
I’m actually really embarrassed as I think about my ignorance, but I think the important thing is to educate yourself and be willing to listen and learn.
It was a huge revelation to discover that I am Autistic myself—so many things finally made sense about me and about my life. It wasn’t until discovering Rudy Simone’s book, Aspergirls, that I learned that there’s so much more to Autism than what’s popularly known. That book was the gateway to me discovering that women and girls (and some men and boys!) often present incredibly differently. I learned what camouflaging and masking of Autistic traits is and that I have been doing it for a very, very long time.
The homepage of your website says you are “proud” to call yourself autistic. Can you explain why?
That’s a good question. In short, I am proud to be me! And a large part of my identity is being Autistic. It’s the way my brain is wired and the way I function. If I wasn’t Autistic, I would be a completely different person; I would have gravitated toward different friends, hobbies, interests, and studies. I would think, act, experience, talk, and function completely differently. I love me and I love the unique, beautiful way that I think, feel and function, and how I see and perceive the world. I don’t reject being Autistic. I am proud of who I am, and I just happen to be on the Spectrum!
I’m also proud because it means that I’ve had to work harder at many things than a lot of people have, but I’ve done it and I continue to do it. It’s not all rainbows and sunshine, and I do struggle a lot. But it means that I’m strong, I overcome adversity, and I do my best to function in a world that so often feels like it wasn’t designed for me.
How has autism impacted your work life?
I finished three years of assistant teaching in Japan. After that I was a part-time tutor. I realized that the part-time, one-on-one teaching was much more manageable for me and started to think about what kind of job would better suit my needs and strengths.
While working full-time in such a social job like teaching, I didn’t have a whole lot of energy for anything else. I was completely drained and overloaded; when I came home from work, I relaxed and slept and that was about all. I spent a lot of my vacation time at home recovering rather than going on many actual vacations. I very rarely socialized outside of work. I have chronic fatigue and fibromyalgia, but one of the biggest drains from that job was being in front of large groups of people and camouflaging/masking all day long in a noisy environment.
I’ve been reevaluating my needs and my career path since my diagnosis. I’ve been considering going back to school to become a librarian, and I think it would be perfect. Literature is one of my special interests, and I’d love to share my passion with people. I’m good with information; I love research, helping people, working with children, and books. And I would likely be assisting people one-on-one in a more quiet setting.
I’ve definitely been getting better at listening to my own needs and playing to my strengths since my diagnosis rather than struggling through things because I feel it’s expected of me.
Your reference to using an “operating manual” as a means to navigate socialization is especially vivid and helpful for neurotypicals to understand. What advice do you have for neurotypicals who want to help make autistic people feel more comfortable in the social situations they share?
Well, I can only speak for myself since every Autistic person is different, but there are a few things that I’d certainly appreciate:
1) Not insisting I make eye contact is a big help
. Making eye contact can be really uncomfortable and feel invasive, so much so that it can distract me from the conversation. I can actually listen to you more closely if I can just focus on your words while I look elsewhere.
2) Giving ample time to consider and process a question is essential
, especially when I am overwhelmed or overtaxed. If I need something repeated, I will ask. But interrupting my thought process can mean I take longer to collect my thoughts.
3) Please keep my sensory needs in mind
since they can influence my social capacities a lot. Taking into consideration if we’re in a loud place or it’s crowded or the lights are bright might help you understand why I seem anxious or don’t seem like I want to talk. Considering these things and giving me the option to move somewhere quieter or more comfortable without judgement means I can socialize much longer.
4) Respect my need for alone time.
It’s not that I don’t want to talk with people, but sometimes I just don’t have the energy at that moment. Please don’t take it personally. I may just need some alone time so that I don’t have a meltdown. I may need to be alone to have
a meltdown. Giving me a hard time about not being able to be in a social situation means I’ll be more hesitant to engage with you later.
These are things that would help me a lot, but may not be the preferences of everyone. I’d say when in doubt ask the Autistic person themselves when possible, ask a caregiver or parent, and/or try to observe the person and see what makes them most comfortable.
How can parents help with the fatigue of socialization their children may experience from a typical school day?
School is definitely exhausting and overwhelming sometimes. Having down time at home was key for me to get through the school week. A good start would be trying to figure out some kind of decompression routine when they come home to help destress and transition into home time. I think it’s important not to make any demands or requests straight after school while they are trying to recover from the day. Making sure there is a comfortable, quiet, safe place to relax for a bit can make all the difference. Determine if something like a bath, weighted blanket, bouncy ball, favorite TV show, stuffed animal, favorite toy, or just complete silence would help them relax and feel safe after a long day. I also hope that parents will try to remember that their child may have spent the entire school day keeping everything together and/or masking, and it therefore might be more difficult to do things once they get home and can finally relax.
What mistakes do neurotypical autism advocates make?
I think the biggest mistakes I see are forgetting Autistic people are just as unique and varied as neurotypical people are, and not listening to Autistic people’s voices enough.
There are so many valuable resources available to parents, but what are some of your favorite books or articles you would recommend to a parent with a newly-diagnosed child or teenager?
Yes, there are so many! I’m still discovering new ones every day, but I do have some favorites.