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.

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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.

Sunday, September 16, 2018

I broke up with Matt.

I broke up with Matt.


I thought I should at least explain to you guys what happened. I wanted to make a video about it, but frankly I've been too exhausted by the whole ordeal to put myself in front of a camera. So I will talk about it here.

I know a lot of you who have been following me on Facebook, YouTube, etc. knew of my relationship with Matt and that from the outside, it seemed to be going well.


WHAT HAPPENED?

The reason why I broke up with him was mostly due to incompatibility. I had been ignoring my gut feeling for a very long time (almost since the beginning of our five-year relationship) that something was "off."

Logically, there seemed to be a lot of benefits of us being together. We seemed to balance each other out with our strengths and weaknesses, mainly. I was happy to have someone to help me get my needs met (like cooking and helping me stick to a routine), and Matt was happy to have me nearby to keep him calm and balanced.

Both of us were lonely and needed someone there. But the fact is, we were complete opposites personality-wise and in terms of upbringing (though there are a few similarities: i.e. both aspies with a few shared interests in video games/movies/media).

I thought the "opposites attract" idea should apply here, so I tried to make it work. We have different cultures, socioeconomic backgrounds, politics, and world views. I also tend to be very verbally and emotionally expressive (I have a love for lavish words), while Matt prefers to keep to himself and state things simply without sugar-coating.

We both had put a lot of effort into the relationship, but seemed to disappoint each other far too often. At least, that's how it felt to me. I got along with Matt on the surface, but I needed something more. Neither of us felt validated by each other and kept miscommunicating and hurting each other somehow.

Matt still wanted to continue the relationship and get married, so that's why I was the one to break it off. I knew it just wasn't going to work in the long-term. Each of us deserve someone more compatible with who we are, and not to settle for less just so we won't be lonely. 

Needless to say, Matt is not happy with my decision and has been giving me a lot of trouble over it, so I've had to block him on all platforms. I tried to be as civil as possible--I had no ill feelings towards Matt and wanted to be considerate--and was hoping it could end smoothly... but that didn't happen. That's okay.

Please know that just because we didn't work out, doesn't mean aspie-aspie relationships are doomed to fail. Similar neurologies certainly help, but compatible personalities are even more important in a relationship. There are a ton of fish in the sea, and sometimes it takes a few tries to find the right one. I'm alright with that. I'm ready to move on and see what's next for me.


WHAT NOW?

I am certain that being stuck in a difficult relationship has contributed to my mental health decline and my refusal to work. I was afraid of everything and not feeling particularly encouraged to give working a try. But I think I'm ready to get a job now. I know I still have limitations and can't work full time, and that working will impact my SSI benefits, but not making my own money has affected my self-esteem, even though I've kept busy and productive all this time.

That being said, obviously my plans to move to Ohio are no longer. I'm staying in Illinois until my parents move next year, and I'll likely follow them since I'll need the support. I'm on good terms with them and have no problem with it.

As for the GoFundMe campaign I put up a while back, thank you guys so much for contributing, and I'm sorry if the outcome is disappointing. I will be closing the campaign as to not mislead anyone. The remaining money will go towards similar expenses as what's listed in the campaign--I know I'll need it more than ever since making money on my own is going to be very difficult.

I will be doing my very best to work and make money, though it may not be enough to keep me going if I decide to leave my parents' house. One month of my SSI benefits by itself is not even enough to cover one month's rent in Illinois (one big reason why I'm staying with my parents), let alone my student loans, medical expenses, and daily living expenses (i.e. food and toiletries) which is what it primarily pays for.

If this change (the breakup) is unacceptable to you who have contributed, and you want your money back, let me know. It'll be hard for me to do, but I want to respect the wishes of those who have been kind enough to donate in the first place, and can try to figure out how to issue a refund if it's requested.

Instead of another GoFundMe, I'm going to start up a Patreon account so you guys can support my work on The Life of an Aspie (blog, YouTube, & Facebook page) if you'd like to. Rewards for becoming a patron will include things like exclusive updates on my Asperger's book and fantasy novel, membership to my brainstorming team for posts and videos, your experiences with ASD/ND/mental health you want to share posted on the LOAA Facebook page, and your work/services (if you are on the spectrum, or if your work is related to ASD/Neurodiversity/Mental heath) advertised on my page every month.

I want to have this option open to my followers who like my content and want to help keep me alive so I can continue advocating for the autism community! I will make a separate blog post once I've got that Patreon set up.

Here's to looking towards the future.


Wednesday, September 12, 2018

"We need to unburden suicidal minds" ~ Thoughts on Agony Autie's Video

Agony Autie, an autistic self-advocate named Sara Harvey, posted this raw and honest video about her experience in dealing with mental health "professionals" regarding her suicide ideation.

I wanted to share this because I think it's very important that doctors, hospitals, and other mental health resources develop a more helpful response to suicidal people.


"We need to unburden suicidal minds"

I'll also sum it up here.

Hospitals, doctors, police, and even dedicated mental health teams are not always equipped to truly help suicidal people. (Depends on the location and doctors.) In fact, the "help" they offer can easily make them feel worse. Sara points out that the typical advice for suicidal people is to "talk to someone" or "seek help"... but she emphasizes that you have to be careful who you talk to.

Friends, family, and trusted people can often be more helpful and involved than hospitals, doctors, etc.




~ This next part is about me. (Alyssa) ~

I remember when I was around 16-17 years old, I had a breakdown due to suicide ideation... I told my mother, and she took me to the hospital out of concern for me. She was there with me the whole time. I told a therapist at the hospital what I was thinking about, that I wanted to kill myself, and that even at that moment I thought about banging my head on the floor. The therapist strongly recommended I stay in the psych unit overnight.

My mother asked if the psychiatrists/psychologists knew anything about Asperger's, and they said they didn't know. (if that's not a bad sign then I don't know what is.)

So my mother refused to allow them to admit me. They threatened to call DCFS (Department of Children and Family Services), but my she didn't listen and took me home.

They were hesitant to discharge me, but because of her, they finally did let us leave. My mom slept on the floor in my room that night; I am thankful for that, as it allowed me to feel safe and comforted enough to sleep. It's just what I needed, not a hospital.

I was terrified at the idea of staying at a hospital or psych ward. The environment was so unfriendly to my senses and people didn't seem to know how to help me. I felt worse every moment I was at that hospital, not better, and was relieved to be allowed to go back home.


Hospitals feel more like a prison than a place for healing.

We
shouldn't punish suicidal people for feeling suicidal. We shouldn't act like it's criminal to want the pain to stop.

We need to acknowledge it for what it is: the result of a mind and body so overwhelmed that it cannot cope.

In my opinion, the best medicine is love and care, a safe place to be yourself, and validation of your feelings and experiences as a human being. That would certainly help me more than any hospital could, when it comes to suicide ideation.

P.S. Thanks, Mom.

Thursday, September 6, 2018

"I Can Communicate! AAC" & Other Apps for Nonverbal Communcation

I was looking into AAC apps so I could test some out, and came across one called "I Can Communicate! AAC." I added it to my resources list on Facebook since I know some of us might need it. Check out the app here.



I can speak, but I have moments where I am nonverbal. It doesn't happen often, but it's distressing when it does, so I figured it'd be nice to have an AAC app as a backup.

For instance, one time at college, I was in the cafeteria and experiencing sensory overload. I was nonverbal and wanted to ask one of the chefs if I could have a container to take the food to a quieter location (usually not allowed). I ended up writing what I wanted to say on a napkin and handed it to them--it worked, and I got what I needed, but it would have been quicker if I had an app for it so I wouldn't have to suffer the anxiety for so long. Plus I hate handwriting.

Usually I just wait it out when I'm nonverbal. If I really need to communicate during that time, I put up with that feeling of being utterly alone and trapped in my own head, because I'm used to being seen as "high-functioning" and don't want to be looked down upon for using AAC. But I think at this point I need to get over it, and non-autistics do too... everyone communicates differently, and AAC is a totally legitimate method. It does not mean we are any less than verbal people.

Feel free to recommend any other alternative communication apps so I can add them to the resources list on this page!

~Other apps recommended~
(Including I Can Communicate-- some of these recommended by a friend, thank you!):

I Can Communicate! AAC (Text to speech, pre-programmed picture buttons that convert into speech; can add your own buttons with a customized message.)


LetMeTalk (Text to speech, line up images to form sentences.) 


Emergency Chat (Similar to texting, but between two people on the same phone)


Tippy Talk (Tap a picture, it sends a text to any phone.)

Wednesday, September 5, 2018

Current Mental Health: Utterly Horrid.

Current Mental Health: Utterly Horrid.


For the past 10 years, I've swung between "I'm okay" and "please kill me."

I can name a few specific stressors that may have contributed to this, "typical" ones that could happen to anyone (like a new home, breakups, or trauma), but I often wonder if the majority of it is my incompatibility with this world as an Autistic person.

Things keep changing, I can't process them. Everything is too loud and bright and itchy and overwhelming. Daily living tasks can seem incredibly daunting.

My reactions are becoming more and more extreme over time and I don't know why. I sometimes go nonverbal, and sob all day, wishing I could cease to exist.

I see other autism advocates online posting such great and helpful content, and I want to do that too. I have a bazillion ideas of what to talk about, but it somehow never makes it way to my blog or YouTube channel because I'm so beaten down by simply existing and dealing with mental illness. I cannot stress enough how much I want to contribute more to the autism community, and you amazing people reading this.


I'm an adult, and while my parents are very gracious and don't expect me to be a superhero, I have high expectations of myself. I want to be entirely self-sufficient and it destroys me knowing that I can't be.

I've not worked since 2012 due to going to college, and while social security benefits (I'm disabled) have been a lifesaver, I've felt trapped due to the income restrictions and the possibility that I will always have to remain poor to keep receiving the help I need (food stamps, SSI, Medicaid/Medicare, etc).

I know deep down that being forced to remain poor is entirely unacceptable. I may have limitations, but that should not bar me from living a fulfilling life and having some financial freedom. I want to go out and do fun things more often: see a movie, go out to eat with friends, etc.... I know there's a lot I can do for free, but I wish I could do more. Maybe go on vacation someday if I'm lucky, or travel. Visit Internet friends in other countries and try new things. At the very least... I'd love to be able to pay for therapeutic things like a chiropractor (I'm all out of shape), yoga classes, massages or anything that I know will improve my health and quality of life.

That's hard when my SSI doesn't even cover the cheapest rent in existence and I have no choice but to live with someone generous enough to tolerate my presence, and my inability to pay for anything or contribute to the household.

I look around and see other autistics in the same boat as me. Though many are worse off, either not eligible for financial help or cannot support themselves, trapped in a house with abusive family members or friends, or at constant risk of losing their home. And this is on top of processing the overwhelming world with our heightened senses and dealing with people not understanding us. It breaks my heart to see this happening and it puts a damper on my hope for our kind... my hope for me.


My Dream: Assisted Living for Autistics

Image Credit: "Blue House With Flowers" by Andree Lisette Herz

You know what I'd love? An assisted living situation for people on the spectrum. For autistics of variable functioning levels, strengths and weaknesses. We'd help each other out, each person using their strength to make up for another's weakness. And for the ones who need a lot more help and/or cannot contribute, they'd be cared for by the others.

I'd like a place where flowers grow, but I'm not expected to water them. Where I can eat well without burning myself out from cooking and doing dishes. I'd do other things to make up for it, maybe by being an organizer or checking if the chore were done, or doing daily/weekly checkups on the other aspies/autistic people to ensure they're getting what they need.

I'd like a place where my strengths are valued and my weaknesses are accepted. A place where stimming and being our "weird" selves is totally normal. A place with soundproof walls and doors to allow as much privacy for each person as possible. A place with big rooms with everything a person could need, like a mini apartment with a kitchenette, a small living room, a bed--and be customizable based on the resident's needs and preferences. And definitely, absolutely, a place where we are valued as human beings and not seen as a defective charity case, but a PERSON deserving of a full life with equal parts support and personal growth.


Monday, August 6, 2018

Thank You!! ~ GoFundMe Campaign Update


Thanks to you guys, I'm almost ready to move to Ohio to be with Matt so we can support each other. :) All that's left is to get a moving truck so I can be officially moved in.

Support Alyssa & Matt's independence ➤ http://www.gofundme.com/alyssa-matt-aspie-love

Side note: Turns out I might lose my SSI/disability benefits if I get married, so the fundraiser will mostly help cover moving expenses. I will have to wait until I can get a suitable job before I tie the knot.

Bloopers from this video (trust me, they're great) ➤ https://youtu.be/QDNeZdwM_xQ

(Video Transcript)
Hi! I'm Alyssa of the Life of an Aspie, and this is my fiancé Matt (who is secretly a viking). I'm in Ohio for a visit, getting things sorted out so I can move here soon. That's why I've not been as active online lately.

Also, if you're wondering what happened to my hair, I did another video on that so check it out if you haven't already seen it.

I wanted to say... thank you all so much for supporting our GoFundMe campaign! For those of you who don't already know, it was to help me move to Ohio officially so I can be with Matt and get the support I need.

Matt and I are both on the autism spectrum, and we function a lot better when we're together because we help take care of each other. I needed the financial support to get here since I cannot work a job right now due to my disabilities.

So far, the funds have helped cover gas for my car so I could drive to Ohio to secure housing here. Thankfully, we did find a place to live within our means, so that's taken care of.

Your support has also helped pay for groceries, basic necessities like shampoo, toothpaste (things like that), some of my out-of-pocket medical costs (because I have a lot of issues), and a few items for the house like cleaning supplies and a cheap vacuum cleaner since we didn't have one.

Again, thank you all for your support, you are amazing and I really value being able to share these things with you thanks to the wonderful thing that is the Internet.

The GoFundMe is still open for donations, so if you haven't been able to support us yet but want to, or you have but want to give more, it's still there. The link is in the description. 

We do have one more major expense, and that's renting a moving truck so I can bring my belongings from IL to our new place here.

I'll be heading back to IL soon, and I'll be able to host more livestreams and participate in the Autistic Gaming Initiative again. I will make sure I have internet access when I officially move here, so I can continue my work and keep in touch with you guys.

Again, thank you for all your support, and have a great day!

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Asperger's Documentary ➤ https://youtu.be/2TSlti5bioQ
Asperger's/Autism Support Groups & Resources ➤ https://goo.gl/Bd10tg

Subscribe ➤ https://www.youtube.com/user/AlyssaHuberFilms
Alyssa Huber Films [Official Website] ➤ http://www.alyssahuberfilms.com
My Asperger's Blog ➤ http://life-of-an-aspie.blogspot.com/
Facebook ➤ http://www.facebook.com/AlyssaHuberFilms
Twitter ➤ https://twitter.com/alyssahubfilms