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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.
