I asked autistic people the following questions:
What aspect of autism do you struggle with most? How has it impacted your life?
Here are the responses from 20 different autistic people:
“The social difficulties. I feel so chronically alone and isolated all the time, even when I'm physically surrounded by people. It's made me constantly rejected, and I have a lot of trauma from that social rejection.”
“Emotional regulation is my biggest one. It makes me very reactive and seem like an angry person but I'm really just overstimulated by things others wouldn't be. It impacts my relationships and I often have to come back and repair if/when my reactions affect the people around me.”
“Suffering from migraines every time I'm in sensory overload or when my routine changes suddenly.”
“Today I can't stop thinking about skill regression and how I used to be able to work 40 hour weeks and I could juggle a social life too. I cut down my work hours by a lot and am now picking them up again (still not even to full time) but it's only been two weeks and I'm overwhelmed. I'm really feeling sorry for myself and feeling frustrated that I “can't do what I used to do". I feel like that's not something I should be saying at not even 30 years old, but I know it's nothing to do with aging and just to do with what works for your brain.”
“Truly honoring my capacity while still somehow managing to earn enough money to live. I still haven't figured out how to do both.”
“My executive dysfunction… I've been in burnout so long it feels like I'm paralyzed. If my youngest adult child comes alongside me to help me start a task, it might actually get done... Or at least it gets started anyway. Oh and showering (hygiene care) is nonexistent unless I plan for days ahead to make sure I have the energy to do it. Sensory overload wreaks havoc.”
“Honestly for me, the sensory differences are the biggest struggle and always have been. Since having kids, those sensory things have become increasingly more difficult. I think it's hard to know other people have capacity for their kids that I just don't have. I love them so much and there are certain things I'm really good at in parenting. But it's really hard knowing that being with two kids at the same time for a longer period of time just completely drains me.”
“The social anxiety. When I had roommates, I was getting flustered just thinking of leaving my room when they were in the living room or kitchen and I was often asked if I was mad or annoyed at them. I just didn't want them to look at me while I was fetching a glass of juice or scrutinize me while I cut some veggies or even interact with me while I ate. But having a roommate is often the only way to afford rent. I live alone now, but finances are my biggest concern. I can't save as much money as I'd want and that means being stuck here for longer than I'd like…”
“Definitely the apparent lack of understanding in the social arena — it has impacted my entire life where I have always felt like the outsider, an alien, or like everyone is speaking another language. I just always felt so confused. I never fit in and my social anxiety seemed to get worse and worse the older I got. Friends would just drop me like a hot potato and I have no idea why. It hurts and has made me so much more of a hermit.”
“The aspect of autism I struggle with most is having a job. I also have chronic illness and can't work a regular job due to energy levels. This leads to me not being able to make my own money regularly, not being financially independent, and feeling like a failure as an adult. I feel so inadequate because I just want to work and earn my own money, but it seems impossible.”
“I struggle to prevent myself from talking too much about my special interests; that is the only way I can deeply connect with people, but most people aren't as interested as I am. I struggle a lot with loneliness even around others.”
“I can't deal with sudden change or if something isn't how I imagined it to be. It often leads to a meltdown or depletes my energy. When I'm in a relationship this leads to fights as I'll often get angry before melting or shutting down. I'm ashamed to admit that I'll scream at my partner in these situations. If change happens too often at work (e.g. people leaving, new people being hired) it also depletes my energy. It gets almost impossible to keep up my performance and mask. It's very exhausting.”
“The social anxiety that comes along with social difficulties. Every day that I have to speak to someone I get overwhelmed, and none of the help or advice for social anxiety works for me!! So I'm basically just anxious all the time unless I stay at home like a hermit.”
“For me it's skills regression as I've learned to unmask and as I found out that I was masking for 24 years. It is a real struggle for me, and it is even harder for people around me to understand that I'm not able anymore to cope with situations I tolerated before. Or that I can't do certain things anymore because I was only able to do them because I was unknowingly masking. Now knowing that it was all a mask, I can't do it anymore. It has become so hard. It is the most frustrating, but the real struggle is really this shame and fear of judgement I feel because of that skill regression.”
“Mostly just not being able to have a full time job to keep my bills paid AND being regulated and healthy at the same time. I can never feel fulfilled when I'm stuck giving everything to keep a job.”
“Honestly it's kind of a toss up for me between my sensory sensitivities and my really uneven energy levels that are often hard to predict. Even calling the way I process sensory information a "sensitivity" feels like I'm selling it short. Sound sensitivity is probably my most difficult. Every store now seems to have music blasting, and with the nicer weather lately, I can't seem to escape trucks and motorcycles revving constantly. It causes me physical pain and on my worst days, I just hunker down with my headphones on and sob because I can't get a break.”
“The social and sensory aspect. I feel like those often go hand in hand for me. I'm a high masking autistic. Sometimes when I'm overwhelmed/overstimulated sensory wise, my mask starts to sorta glitch or come off and I start stimming more and trying to regulate myself and because of that, my social mask slips off, meaning I would be more straight forward in conversations or my tone becomes more flat, etc.”
“Lack of executive function and lack of assistance with this in everyday life. I have a 7 yr higher education in the arts and perform at a high level, so no one takes the disability part seriously and I’m just left on my own to basically fail at what I can’t do.”
“Being social and maintaining relationships is definitely the hardest part for me. When I was younger I masked pretty heavily, making it seem like I was a social butterfly and showing up to every party or event. Over time (especially after my diagnoses) I realized that I couldn't always keep up with everyone else, because it really came at a cost for me.”
“I'm lucky to have friends and family that mostly understand, but because I retreat for long periods of time, I don't have the same strong/familiar bond as I see other people having with their friends. I want that so badly but I always need to isolate to cope with burnout and life in general.”
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