Autistic People Answer 15 Questions About Autism
During Autism Acceptance Month and all year long, one of the most important things we can do to support the autism community is to listen to autistic people. That’s why we asked autistic Mighty staff and members of our community to share their experiences with autism. Here’s what they had to say.
Responses have been lightly edited for length and clarity.
If you could tell the world one thing about autism, what would it be?
- I wish I could tell everyone to listen to autistic voices. We are so often spoken over, and our experiences are dismissed. It feels like the people who say they are trying to do good for you are just trying to gaslight you. It feels as if their opinions matter more than those of someone who is autistic. – Amelia Blackwater
- Get ready for the neurodiversity revolution. Never before have we had so many wonderful self-advocates speaking up and changing the world. This April, it may be Autism Acceptance Month, but I hope soon that we can call it Autism Pride Month, because we have such an amazing community and so much to be proud of. – Nera Birch
- Despite what some might think, autistics are not all the same. We are of different, races, ethnicities, male, female, gay, straight, economic backgrounds, ideologies, have different interests, and so on and so forth. It’s not called neurodiversity for nothing. – Robert Schmus
What were some things (behaviors, thoughts, feelings, symptoms) that you were surprised to learn were related to autism?
- The things that surprise me the most are some of the comorbid diagnoses that many autistics have. Nearly 75% of autistic people have at least one other medical condition and more than 50% have 4 or more. Some of these diagnoses include ADHD, gastrointestinal problems, dyslexia, Ehlers-Danlos syndrome, anxiety, depression, eating disorders, and OCD. – Amelia Blackwater
- I feel the most interesting thing I found out about autism was the characteristics. What I mean by this is that before my diagnosis, I found out that the things I did that made me calm, like rocking back and forth and flapping, were usual for autistics and that it was called stimming. It felt great knowing that I was not alone. – Robert Schmus
What’s a myth about autism you want to debunk?
- One of the myths that I feel really harms the autistic community is that autistic people don’t have friends or relationships and don’t really want them. Of course, we can have friends and relationships. In fact, many autistic people want to have friends and relationships but can have trouble due to communication issues. Autistics that have friends have deeply profound relationships. I tend to have just a couple of friends that share the same interests as me, as I don’t really like hanging out with someone I can’t be myself around or talk about things I don’t like. – Amelia Blackwater
- My favorite one is when someone told me that mint oil could “cure” my autism. But the cured thing in general makes me mad. Yes, there are rough days full of meltdowns and miscommunication where I pray that I could take away my autism. But, for the most part, I adore my autism. Why would I want to take away what makes me me? – Nera Birch
- I guess that would be the myth that we are all great with technology. Now there are autistics out there who are brilliant in the tech field. However, not all of us are. For instance, I’m terrible with technology, but there’s nothing wrong with that. – Robert Schmus
What do you love and/or dislike about autism?
- I love that I can hyper-fixate on my special interests. It’s my favorite thing about being autistic. I love that when I’m intensely interested in something I get lost in it and I learn everything I can about it. It can be even more special when I can share that knowledge with someone else. – Amelia Blackwater
- The worst part about autism for me is the meltdowns. I have quite severe meltdowns, on a regular basis, over tiny things like my boyfriend not texting someone what their favorite color is. It can be embarrassing and frustrating. My favorite part is the superpowers autism gives me. I can read a book in an hour, get pure joy from my favorite sensory experiences, and can see the world in such a cool and different way. – Nera Birch
- What I love about autism is that we are a community. When I was diagnosed, it was amazing to find out that we are others out there who are similar to me. – Robert Schmus
What are some things an autistic person should never feel ashamed about?
- I feel that there is a lot of guilt and shame that is placed on autistics. No one should ever be ashamed of their autistic traits. For a long time stimming was considered disruptive and harmful. We should celebrate our stims. They help regulate our emotions and can be extremely helpful during stressful times. Another thing I don’t believe autistics should be ashamed about is becoming selectively mute or being non-speaking. Speaking isn’t the only form of communication and it’s OK to use augmentative and alternative communication (AAC) or sign language. – Amelia Blackwater
- Autistic people should never feel ashamed about their stims, special interests, and well-developed sense of morality. We are not broken neurotypicals; we are unique and wonderful autistics who should be embraced for who we are. – Leslie A. Zukor
- You should never be ashamed of who you are and what you like as long as you aren’t hurting yourself or others. Some of the things that toxic people in my life used to make fun of or limit, such as stimming or “age-inappropriate” interests are the things my friends love the most about me. It has taken me such a long time to be proud of my autism, but the fight has been worth it. I truly love who I am and everything that makes me me and one of my advocacy goals is to help others feel the same. – Nera Birch
- There are so many things I think autistics shouldn’t feel ashamed about. Whether it’s your special interests, autistic traits, becoming selectively mute (which happens to me plenty of times during meltdowns), stimming , having meltdowns, or being non-speaking, there’s no shame in being unapologetically you. It’s taken me over 30 years and a late 20s “Hey, did you know you’re autistic?” moment from my therapist to get to this point, so I understand if anyone struggles with these feelings of shame. – Monique Vitche
If you could curate a list of books either about autism or that feature autistic/neurodivergent characters, what would you include and why?
- Books about autism from autistic writers have profoundly affected my life. They helped me understand that I was autistic and eventually helped me get a diagnosis. Two of the books that I highly recommend are “Everyday Aspergers” by Samantha Craft and “Neurotribes” by Steve Silberman. – Amelia Blackwater
- “I’m Not Broken” by Eric M. Garcia. The neurodiversity paradigm is vital to accepting #ActuallyAutistic people, and we deserve to read affirming literature about ourselves. – Leslie A. Zukor
- My favorite book that features a [potentially neurodivergent] person is “Eggshells” by Caitriona Lally. They never outright say that the main character is autistic, but I have never read words that felt like they were mine as much as I did while reading this. – Nera Birch
- I’m actually reading, “Spectrums: Autistic Transgender People in Their Own Words” edited by Maxfield Sparrow. As a queer non-binary autistic person, it’s definitely an intersection of interest, but I am always interested in reading about different intersectionalities as they relate to autism and other conditions. – Monique Vitche
What are some “harmless” comments people have said about you being autistic that actually hurt?
- Before my formal diagnosis, I was self-diagnosed autistic for 7 or so years. I often wouldn’t talk about my autism to people because of some of the harmless comments that I would hear. One of the main ones was “everyone’s a little autistic.” By saying “everyone’s a little autistic,” it diminishes the struggles of an autistic and can cause many who are undiagnosed to never seek help. – Amelia Blackwater
- Some “harmless” comments people have said include the following: “You can’t be autistic because you have empathy,” “You’re just lazy,” and “You’re not autistic enough.” – Leslie A. Zukor
- “You don’t look autistic.” People seem to think that it is a compliment to tell me how “normal” I seem. Because of society and people who have a close-minded view of autism, I am often forced to mask for my own comfort and safety. When you tell me I don’t look autistic, it’s because I am trying to bury my true self as far down as I can. It is something that hurts me greatly to do, but I don’t always have a choice. – Nera Birch
- Some harmless comments people have said to me include: “You’re not really autistic because you don’t have a formal diagnosis from a neuro-psych. Your therapist just discussed it with you.” Also this: “So is that why you’re like a human calendar?” – Monique Vitche
How would you describe “autistic joy”?
- My autistic joy is very special to me. My autistic joy can stem from my special interests, an event, or just plain excitement about a texture. I tend to feel emotions in extremes and that is the same when it comes to joy. I get so excited when I engage in my special interests. I am the ultimate fangirl, finding every fact I can about my special interest. – Amelia Blackwater
- Autistic joy describes our unique excitement about our special interests which we can spend hours, days, or weeks on. We get so much pleasure from diving deeply into a topic and discovering everything about it that there is to know. – Leslie A. Zukor
- Autistic joy is one of my favorite parts of autism. It is such a pure thing to feel and witness. Autistics may have to deal with a lot of sucky things neurotypicals don’t － such as processing and communication issues － but on the flip side of the coin, we get to experience joy in a way a neurotypical simply can’t in my opinion. When I feel autistic joy, it usually comes from one of my special interests, such as knitting. The joy makes the difficult part of autism a little more bearable. – Nera Birch
- “Autistic joy” is something that is hard for me to describe but wonderful to experience – but I’ll do my best to describe it for you. Picture yourself winning tickets to your absolute favorite slam poet’s event, complete with an autographed copy of their latest poetry book. Picture feeling good… really good and it flows through you like an electrical current (in a positive way, get it?). That’s the best way I could possibly describe autistic joy. – Monique Vitche
Whether you’re currently in a relationship or not, what’s one piece of advice you’d give other autistic people when it comes to navigating romantic relationships?
- Don’t settle for someone you feel you have to hide your autistic traits around. Autism is a part of who we are. If someone you have a romantic relationship with can’t accept that then they aren’t worth being in your life. I think sometimes we feel like we have to settle because we feel as if no one would want to go through the struggles. Enjoy the time you have to yourself and explore what it means to be you. Eventually, someone will come along and want to join in. – Amelia Blackwater
- Don’t settle for a romantic partner who calls you “weird” for your autism. There are billions of people on this earth; your special someone should embrace all of you. Autistic people are capable of deep, loving, and feeling relationships. Don’t feel like you have to fall for the first person who takes an interest in you. – Leslie A. Zukor
- Relationships don’t have to look the typical way society has made them. A cool fact about autistics is that we are far more likely to identify as LGBTQIA than neurotypicals. I am also polyamorous, which I think has a large part to do with my autism and the way my brain is wired. Most of my autistic friends and acquaintances are also in queer polyam relationships. I love the little family I have created. My advice is to love who you love and don’t let society’s “norms” stop you from pursuing a life that makes you happy.- Nera Birch
- One piece of advice I would give other autistic people when it comes to navigating romantic relationships is one that has been said plenty of times before but I feel is the most important: Don’t settle for just “anyone.” You are so deserving of a loving, meaningful relationship with someone who accepts you wholly and completely – autistic traits and all. – Monique Vitche
What’s an honest social media status you want to post about living on the spectrum, but you refrain from posting?
- For the most part, I’m a positive person especially when it comes to being autistic but there are times especially when I’ve had a meltdown or family has gotten frustrated with me that I just wish I was normal. But in reality, I wouldn’t ever want my autism taken away from me. It’s a part of me. I just wish there was more understanding and acceptance in this world. – Amelia Blackwater
- “I haven’t done my laundry this year, but I look at squirrel-related photos and artwork for three hours a day. #ActuallyAutistic. #ExecutiveDysfunction. #AutisticJoy.” – Leslie A. Zukor
- I want to share myself in the midst of a meltdown on social media. I have posted a picture or two after a meltdown, but I am still a little anxious about not only filming a whole meltdown and then sharing it with everyone. I think it is important for me to do so. I get so frustrated and a little embarrassed about my meltdowns and I want other people to feel less alone, especially about one of the most unpleasant things in an autistic’s life. – Nera Birch
- An honest social media status I want to post about being autistic that I refrain from posting is well, being autistic. A few close friends know I’m on the spectrum but I don’t really feel like dealing with the rest of society. At least not right now. Sometimes it’s easier to just label myself as neurodiverse/neurodivergent as I also live with ADHD than it is to get into the specifics. – Monique Vitche
Talk about an autistic (or suspected to be autistic) TV/movie character you are tired of being compared to.
- I’ve been compared to a female version of Sheldon Cooper from “Big Bang Theory” a lot. There aren’t many female autistic characters in media so the “female version” is usually tacked on to whatever character they compare me to. Even though I enjoy Sheldon’s character on “Big Bang Theory,” I’ve often felt like he is a caricature of an autistic individual. He is often made fun of by his peers or is considered annoying. He also portrays a very stereotypical version of a male with autism. I think this can be harmful because not everyone autistic checks every box that a character like Sheldon portrays. We are all different and I wish that was discussed more in the series. – Amelia Blackwater
- I don’t get compared to TV or movie characters, though my parents called me the “absent-minded professor” as a kid. – Leslie A. Zukor
- I have never been compared to a media character before. I have a suspicion that it is because, at least until recently, females were recognized to be autistic at a much lower rate than males and therefore I didn’t really fit what was already a limited mold of portrayed autism. – Nera Birch
- I haven’t been compared to any characters, for better or worse, but I will say am really sick of people casting characters as autistic just because they’re “quirky.” Quirky doesn’t mean autistic. – Monique Vitche
What helps you ground yourself when you’re experiencing an autistic meltdown?
- When I’m experiencing an autistic meltdown a couple of things that help me ground myself are putting on my headphones and listening to music and stimming with one of my wearable stim items. Sometimes my husband squeeze-hugging me can help me calm down and ground myself. This helps me when I feel like my skin is crawling. He is the only one I will allow to do this. Since I usually don’t like being hugged I usually will ask for a squeeze-hug if I need it. – Amelia Blackwater
- Deep breathing helps me during autistic meltdowns, as well as talking to my mom on the phone. Looking at squirrel pictures is another tried-and-true way of getting me out of my funk. – Leslie A. Zukor
- Deep pressure is something that helps me during meltdowns. I hit my head a lot during meltdowns, to the point where I have concussed myself. It’s something that I am trying very hard to work on to keep myself safe. Deep pressure is a good alternative because it gives me the sharp pain that can snap me out of a meltdown without harming myself. – Nera Birch
- My noise-canceling headphones are a lifesaver. When I don’t have those with me, I almost always have my noise reduction earbuds. The ones I use come in three different “levels” of noise reduction depending on my needs so I use them everywhere – even when I’m sleeping. – Monique Vitche
How does your autism diagnosis affect your ability to work or school?
- I tend to mask when I’m working. Because I’m masking all day at work I am often exhausted by the time I get home. By the time the weekend comes everything can sometimes build up and I can be prone to meltdowns and shutdowns. Schedule changes or anything unexpected can be really hard for me. I learned early that I need to have a steady schedule and not one where my time or work site changes often. I currently work as a paraeducator in a high school with students who have ADHD and autism. I know my schedule every day. However, each semester I might be assigned to a different classroom which causes severe anxiety. – Amelia Blackwater
- It has been said that autistic people have two speeds – absolutely engrossed and totally uninterested. If I am passionate about a topic, I can spend days on end on it. This is a great advantage when doing schoolwork about my special interests . That being said, I despise fiction, and I still haven’t picked up the book of short stories my professor wanted us to read as supplemental material. – Leslie A. Zukor
- I consider myself quite unemployable in terms of how our society is set up. I have worked in the most understanding situations and still have not been completely accepted or given incredibly simple accommodations that could have helped me succeed or even just kept my job. The same can be said for most of my school experiences. Luckily, what I want to do most in life is be an autistic advocate and pride myself on getting quite close to making that my full-time paid job. I like the fact that what would be a hindrance in other jobs (my autism) is what I need to make my actual dreams come true. – Nera Birch
- I don’t think my being autistic affects me too much at work. Although I do struggle a lot with change (only when it’s a lot of change at once), I am lucky that I work for a company and I’m on a team where I feel comfortable communicating that and they’re ready to work with me without hesitation. – Monique Vitche
If you could tell someone who is newly diagnosed as autistic one thing, what would that be?
- Take time to discover what it means for you to be autistic. When you’re newly diagnosed it can feel like you’re an imposter. Especially if you are watching other autistics on social media . It can feel like a comparison game. Be patient with yourself. It’s OK if you don’t feel comfortable yet to unmask or talk about your autism diagnosis. Your journey is your own. – Amelia Blackwater
- Don’t listen to all the people who insinuate that you are a “broken neurotypical person” or that you have to mask to be a successful individual. Embrace who you are, and don’t engage with the autism industry or with “autism moms” who invalidate the reality of your diagnosis because they believe you have it better than their kid. You are worthy of being loved just as you are. – Leslie A. Zukor
- Welcome to the club! We don’t have jackets because we all have different sensory issues and probably couldn’t decide on what fabric to use. Also, remember that who you are is amazing and there is a vibrant, loving, autistic community here to support you. – Nera Birch
- It can be a huge relief and but it may also be overwhelming to find out you are autistic. (I know because I felt All Of The Things all at once.) If you find yourself struggling with your diagnosis, know that you’re 100% not alone on this journey and there is a whole Mighty community ready to embrace you with open arms. P.S. It’s your choice to decide how, when, and to whom to disclose your diagnosis. It’s your story to tell, after all. – Monique Vitche
Any final thoughts?
- Being autistic is a part of who I am, it’s my identity and how I experience and live in this world. I would never want my identity taken away because I’m proud of who I am and who I’m becoming. – Amelia Blackwater
- One last thing I like to say is that I hope we continue to stay as a strong community, no matter what the world throws at us.- Robert Schmus
Getty image by Vadym Pastukh.