Monday, November 12, 2018

What is life like as an adult with autism?

Someone on Quora asked this question, and I thought it might be good to share my answer here on my blog.


Alyssa's Answer:

First, thank you for asking. Not many people are aware that there are autistic adults out there and it’s not just a child’s condition.

I am an autistic adult. I can give you a bit of my personal experience. Just keep in mind that I’m one person, and others may be different.

I’ll explain my specific autism-related issues first:
1. I’m hypersensitive to light, especially florescent and sunlight. I used to get headaches as a kid, until I started wearing sunglasses at all times, which helps greatly. If I’m under lights too long (usually over an hour), it feels like my brain is scrambling and I stop functioning.
2. My skin is very sensitive too, especially when it comes to clothing and climate. I can’t be too cold or to hot, I can’t stand shirt tags and seems, and have to wear baggy clothing to feel comfortable.
3. I’m sensitive to sounds, especially complex sounds like people talking, music playing, and multiple sounds happening at once. I prefer quiet, nature sounds, or music I choose to listen to.
4. I have limited information capacity, and some information feels raw and full of intensity and emotion. I have to be selective about my friends, music I listen to, TV shows I watch, or what I read online.
5. I can be naive if I’m not careful. I want to see the best in others, but I’ve been duped too many times already. I never know who to trust, if someone is lying to me, if they think bad things about me, etc.
6. I experience extreme fatigue from all of the above.
7. I’m also socially awkward. But I guess it comes across as cute to some.

For me, being an adult on the spectrum is much, much harder than being a child or young person on the spectrum. I did experience a lot of anxiety when I was younger, had meltdowns (sometimes resulting in a hole in the wall), but I remember being happier. My parents were a great support to me, and allowed me to be myself (they still do). I was completely content in my own world and found it so natural to be creative and weird and express myself.

When you’re a child, people aren’t surprised that you act like a child. When you’re an adult, you’re expected to act like an adult… which from my experience, is more suppressed, controlled, articulate, etc. While the horrendous experience of school is over, there is still an expectation that you have to make it on your own, and look “normal” in order to get a job and keep it. Not to mention the fact that there is little to no support for autistic adults, compared to all the help an autistic child might receive.

Sure, there are some services that help autistic adults find employment, or apply for SSI if they’re disabled, but there just isn’t enough information to help autistic adults actually access those things. I wish there were free services (because let’s face it, many autistic people do not have a lot of money… at least I don’t), to help make phone calls, or provide step-by-step visual guides to things adults do (even as simple as doing laundry), or come up with scripts to use on the phone or in certain crucial social situations like job interviews.

Phone calls are hell for me. They are unpredictable, and I don’t like being put on hold for a non-specific amount of time (the uncertainty makes me anxious), and I’ve had to make so many calls just to ensure that I won’t lose my SSI benefits, or sort out surprise medical bills, etc. Again, I wish there was a service that makes phone calls for me, or at least for there to be a text or email option for many businesses and government offices, ones that actually get back to you.

My mental health sucks. It’s natural for an autistic person to “mask” their autistic traits to appear more “neurotypical,” usually to set other people at ease since our behaviors can bring about negative reactions from others. Masking helps me get along with everyone more, but it’s extremely stressful from my experience. That set me up for some serious mental health problems.

I became more perfectionist as I got older, trying to meet everyone’s expectations, and adjusting my behaviors in a way that pleases others so I can make friends. The downside is that I don’t even know what I want anymore, because I felt that what I want is supposed to be what everyone else wants from me. It’s made me depressed and unable to fully enjoy my own hobbies, even… what’s the point, if it’s not to please someone else? Besides, if I’m supposed to work work work until I die, how will I ever have time for my hobbies anyway?

I cannot work full-time, because otherwise I’d be in a perpetual state of panic, experiencing suicide ideation and extreme fatigue. I have a hard time taking care of myself as is, and keeping up with basic things like washing dishes and laundry. Hence why I’m on SSI. I’d prefer to be alive and actually wanting to live.

I have less tolerance for socializing and dealing with people’s bullsh**. I do have a few friends that I dearly love, but I prefer to be by myself most of the time. It does get terribly lonely, but people are so exhausting to me that socializing is almost not worth the cost. When I do socialize, I am methodical about it, ensuring I don’t spend more than 2–4 hours with that person (1–2 being ideal), having a solitary “day off” between each “social day,” and arming myself with everything I need—my sunglasses, earplugs, snacks, water, meds, etc. And it HAS to involve something I’m actually interested in doing, or it isn’t worth my time. I try to also group my social obligations together by having a small party with a few friends or doing something as a group, so I can spend time with everyone who wants to see me.

I spend most of my time in my room. My room is comfortable and familiar, a safe haven to me. I do go outside on sunny days to absorb sunlight (it’s good for depression), and sometimes go for walks in nature or to get exercise. But at the end of the day, my room is ideal, especially when I’m living with other people. I don’t like people and objects moving around too much, or making noise. I like keeping everything in its place and having control of what’s around me. I can keep the lights low and the temperature tolerable. I spend a lot of time at the computer since that feels safer than the outside world, and I can still express myself (like I am now) without exposing myself to sensory overload.

Everything is uncertain. I’m never sure if I’m gonna lose my financial safety nets—SSI, food stamps, Medicaid/Medicare… and on top of that, I may not always be able to live with my parents. I cannot afford having my own place, so I feel like I’m always mentally preparing to get rid of all my belongings and live in a box on the street. I know my parents won’t let that happen, but considering my limitations, I want to be ready for anything.

There are positives. For one, I am no longer in school so I’m not expected to socialize and exhausted myself—now I can do that on my own terms. I have more free time to get therapy and live in a way that’s better for my mental and physical health (that’s mostly thanks to SSI—there are many other adults on the spectrum working themselves into terrible states). I also maintain some of who I always was, despite the masking… I am still imaginative as I was when I was a child, I just need to put more effort into accessing that part of me. I’m also hoping to write a fantasy novel soon. Honestly, as long as I can get that published, I wouldn’t mind living in a box on the street holding a copy of my book.


  1. With respect to your ambition to be a published author: I would recommend that you read a few books on book marketing and book publicity. There are a number of things you can do to start building your "platform" while you're writing. Many (but not all) of them are comfortable for autistic person. Getting that up and running will make you more attractive to traditional houses, and will make your options wider if you choose to self-publish.

    I have other recommendations for aspiring authors, if you would like to hear them.

  2. Hi Alyssa - First of all I want to thank you for posting your video about Asperger's on YT. Also, I understand your struggles - I am an spie too. Life is basically a collection of events meant to make you wiser and stronger by learning certain lessons, even though sometimes you would rather just bail out.

    My mum passed away a few years ago and I've been quite lonely ever since (not talking to my father, due to the fact that he is abusive and most certainly has antisocial personality disorder - or sociopathy to be more clear).

    Indeed, working a full-time job is quite exhausting, but it really depends on the job. I worked in a call center for two years because I was desperate, not having any kind of financial support. If you think talking on the phone with angry, uncaring customers sometimes 24/7 is dreadful - you're right, it is absolutely mortifying.

    Eventually I got a different job as a junior programmer and so far things have worked out quite well - I've been told I might even get a promotion next month. It's a lot better having this job as I'm allowed to work from home 2 days per week and while I'm in the office I rarely have to interact with others and I'm allowed to take a break whenever I feel like it. Also my manager is helping me work on my social skills.

    My advice would be to keep going and eventually try and make a career out of your special interest. You'll probably have to fight for it, play pretend sometimes (I think it is well known to aspies that NTs sometimes prefer lies and feigned character because that is simply their logic). But your special interests could very well be stylized into your own qualities, and some employers do appreciate that.

    Best of luck to you, Alyssa!