AAC Aliens

Autistic AAC user who loves biting He/Him white TME Plural 22 ABDL blogs DNI (if you are into it privately that’s fine, but if your blog is focused on that or you leave comments related to it on my posts I will block)

[aacalienz]

Tw institutions, restraint/seclusion, self injury

I’m really frustrated about how intensive support for mental illness and developmental disabilities is always tied to limiting people’s autonomy under our current system. If someone needs 24/7 support to get their needs met and be safe the only options that exist in most cases that are formalized supports are institutions and group homes. Some group homes function like institutions but with less people. It’s almost impossible for a single person to get 24/7 paid support in their own home.

Institutions and group homes often have very strict schedules that the individuals receiving support have little to no control over. Grown adults may be in bed by 8pm because they are on heavily sedating medication. Or the staff may force people to be in their rooms by 8 for staff convenience. Adults without disabilities can choose their own bedtimes even if they make bad decisions. Why are adults who need 24/7 support not given those same opportunities?

Institutions and group homes also give you very limited control over your diet. In institutions you get what is served and you are only able to eat at specific times. In group homes you may only be able to eat when staff chooses to feed you. Sometimes fridges and cabinets are locked so you cannot try to get food without staff knowledge and permission.

Restraint and seclusion is also used as a punishment for not complying or being unsafe. They say it’s only used as a last resort, but that’s not always the case. Sometimes it’s used as the first thing to try if someone is self injuring or being aggressive in any way. Instead of redirecting or deescalating the situation, restraint immediately escalates. It is traumatic for the person being restrained to have their autonomy physically limited and grabbed without consent. It can also be extremely physically dangerous to the person being restrained. Sometimes even more dangerous than the reason they were forcibly restrained in the first place.

But that’s the only way 25/7 support is available currently outside of family. Which isn’t an option for many people. There is help with showering and toileting. There is constant support with supervision and help to keep the person safe. Food prepared for the person at every meal. Support with medications to make sure that the person takes them. All this support literally saves peoples’ lives if they have access to it. Someone could literally die if they can’t feed themselves without help and they live on their own with no support.

Group homes may be the only option for someone to get their needs met and stay safe. But why is someone getting their needs met dependent on them having their rights restricted? A person should be able to get 24/7 care in their own home or apartment paid for by the government. It’s more expensive than warehousing people into institutions and group homes, but it’s the ONLY way to give people the support they need without limiting their rights and autonomy. It’s so important that people are able to have safety and support without giving up their freedom.

[aacalienz]

Do you think the neurodiversity movement is reformable or should it be burnt to the ground?

I actually agree with the ideas of the neurodiversity movement. I agree that there is variation among brains. I agree that developmentally disabled, mentally ill, and other neurodivergent people should be seen as equal and deserving of rights and respect. I believe that the brains of neurodivergent people aren’t worse or less desirable than the brains of neurotypical people. I have complicated feelings about the term neurotypical. I don’t think the way people think about it is accurate. Like a person with depression, but no autism or adhd wouldn’t be neurotypical. But lots of people would say that person was neurotypical because they think of neurodiversity as adhd and autism. Which isn’t reflective of the full spectrum of ways brains can be different from each other. I believe that neurodiversity and differences in brains is simply a fact that can’t be argued with. But having a brain that is different from the way brains expected to think, react and move through society is inherently disabling. Just because my autism is morally neutral or even a thing about me to be celebrated doesn’t mean that it doesn’t make my life harder each day. It also doesn’t mean my disability would be fixed in a world where people accommodated each other.

[aacalienz]

Which AAC program is in your tumblr banner?

It’s an edited version of touchchat with word power. Specifically Word power 108 with keyboard.

[aacalienz]

I feel like a fraud. I regularly do disability advocacy and have done multiple presentations some in front of hundreds of listeners about intellectual and developmental disabilities (which autism is included under), but I still can’t advocate for myself when it counts. I frequently need to seek emergency care either for my physical disabilities or severe mental illness. When this happens I am completely reliant on AAC. This isn’t a bad thing as it means I’m able to communicate, but it makes medical care so much more difficult. But even with AAC I struggle to communicate with doctors. And I am overly compliant with them to the point of causing myself harm. For example not fighting back when people say I need to go to psychiatric inpatient even though I know they are unable to provide me adequate care as an autistic person and usually further traumatize me. Or not pushing back against an unsafe discharge where I was having constant tremors that temporarily improved with medication but returned immediately when I got home. I talk a big game about how people with developmental disabilities need autonomy and deserve to be listened to. But I can’t even speak up for myself. Logically I know this isn’t my fault and a part of my disability, but I feel very ashamed that I can’t do the thing people listen to me for in my real life when the consequences are immediate.

[palezma]

[aacalienz]

The one good thing about having a seizure disorder is that I’m not present for most of my worst medical episodes/lh

Note: if you’re not physically disabled you’re not allowed to joke about it with me. And having seizures sucks so bad so I’m doing what I can to find the humor in it

[pearl-the-artist]

The sword sharpened with tears

[aacalienz]

When you’re this autistic every chair is a rocking chair.

[wheelie-sick]

people saying that pap smears are important on my "if you are too dysphoric to get a pap smear you might want a hysterectomy with a cervicectomy" post are missing the point.

there are numerous trans people with cervixes who you will never be able to convince to get a pap smear. it's great that you can overcome your dysphoria to get pap smears but not everyone can. we already know it's important and for many of us every reminder that we need one only brings dread and panic about the idea of getting cervical cancer but never finding out because we don't get pap smears. telling us the horrors of cervical cancer when we talk about being too dysphoric to get a pap smear makes everything worse, actually, and does not convince us to get pap smears.

if your organs are making you that dysphoric then I really strongly urge you to get a hysterectomy with cervicectomy. you will be happier, I promise. the dramatic reduction in chances of cervical cancer (near zero for most people) will be a weight off your shoulders. there is hope. that is what my post is saying- there is hope for trans people with cervixes who can't get pap smears. reminding us to get pap smears is just cruel.

[aacalienz]

Tw suicidalality mention

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I’ve never had a pap smear and I’m never getting one. I think the dysphoria would make me suicidal. I’m getting a hysterectomy hopefully in the next few months and I’ll never need one. Because I won’t have a uterus, or ovaries, or a cervix. They also found an ovarian cyst on the ultrasound and I’m so glad they did because I’ve never had any gynecological care and who knows how long it has been there. Now my ovaries will be out so I don’t have more cysts. My cervix will be out so I don’t need Pap smears. My uterus will be out so I can never get pregnant. It’s so much of a relief that it’s hard to describe.

[the-kirbe-anon-archive-deactiva]

I love dandelions!

*puts a dandelion in your hair*

Reblog to put a dandelion in prev's hair

[aacalienz]

I’m thinking about starting the process to try and get a dedicated device funded by insurance. I used to use an iPad in a protective case but it was recently broken and is not working currently.

The reason I want a dedicated device is because I have seizures which cause me to drop things frequently including my device which I carry with me almost everywhere. The drops have caused Damage even with a case designed for AAC. I would really like the sturdier cases on dedicated devices as well as peace of mind that my device is covered by warranty for years if it got broken.

My seizures can also cause extreme photosensitivity to the point where I cannot look at electronic screens without having a seizure. I’m looking into alternatives access so I can still communicate during these times. Some options are a physical keyboard so I can type without looking at a screen or auditory switch scanning so it can say words out loud and I can press a button when it gets to the word I need.

My main worry is that I’m denied by insurance because I have some usable speech even though I have extreme difficulty with communication without my device across multiple contexts and environments. I also am worried about finding the right speech therapist because lots of speech therapists who work with people who have developmental disabilities only work with children. I really think this is the right thing for me and I hope I can get it funded.

[aacalienz]

Not my usual content but everyone gaze in the beauty of my rabbit. Her name is Godiva Dark.

Image description: Back rabbit laying on her side in a fabric crate. She looks blissful.

[aacalienz]

Tw abuse mention not graphic

Me: What’s my attachment style

Internet and books: disorganized/ fearful avoidant

Me: what does that mean?

Internet and books: You were abused as a child

Me: Oh

[aacalienz]

Ok I’m physically disabled. I just realized this in the last 2 weeks or so? I just thought all the things that were happening with my body were normal. Including seizures and hypermobile joints.

Because what I was going through looked different than the sensationalized version. My seizures are mostly staring episodes with limb weakness and twitching. I thought since I wasn’t blacking out and twitching on the floor I couldn’t be having seizures.

My joints have also been popping whenever I move a certain way and I can pop them whenever I want. But I thought since I couldn’t do weird party tricks like putting my foot behind my head I couldn’t be hypermobile. I just thought that everyone dealt with the stuff I did.

But I was wondering if any other autistic people especially those with higher support needs have run into similar issues. Like not recognizing you have a physical disability or how intense your symptoms are because you assume everyone’s body works like yours due to poor theory of mind. I really just thought what was going on with me was typical for everyone.

[aacalienz]

I don’t really vibe with the concept of autism inherently being an invisible disability. I feel like it ignores the realities of people who can’t mask and/or are higher support needs. My autism is definitely a visible disability. It’s not necessarily at a glance (though it definitely can be when I’m overwhelmed) but even the average non autistic person can tell I have a developmental disability and that I’m probably autistic within 5 minutes of meeting me. Especially if I’m using my communication device.

[aacalienz]

TW! Medical neglect

Guess who’s physically disabled!? I always thought I was only mentally and developmentally disabled. I struggle with theory of mind so I just assumed everyone experiences what I do. This was worsened by medical neglect from my parents which led to me assuming my medical needs were not a big deal and gaslighting myself.

For example I have seizures. They weren’t tonic clonic grand mal seizures (though I do think I did have a tonic clonic seizure recently) they were mostly staring and dropping things and muscle twitches in the hands. I thought that they were just inattention or dissociation. But I am completely unresponsive during them as well as getting extreme tunnel vision and sometimes falling asleep and I’m very confused when I wake up.

I might also have hyper mobility. Apparently your knee isn’t supposed to pop whenever you want. I just assumed all this is normal because I have extreme difficulty with interoception and theory of mind. So I don’t notice symptoms AND I assume my experience is universal because I forget others experience things differently.

This has come up rapidly as I moved out because my roommates ask questions about my health and when I answer they sound very shocked and tell me those experiences aren’t normal. My parents were very good about treatment for acutel illnesses but anything chronic they either dismissed or dropped the ball on making me appointments.

For example I didn’t go to the dentist for 3 years as a teen because my parents didn’t schedule an appointment even though her dental insurance provided free cleanings. My parents also stopped taking me to the neurologist after one visit and normal EEG despite what I know now was likely continued seizure activity.

Medical stuff is just very hard and confusing for me as a person with a developmental disability and I missed stuff that might have been obvious for people without I/DD. I’m processing a lot right now

[aacalienz]

Peridot from Steven Universe is an AAC (alternative and augmentative communication) user!! I believe this with all my heart. Some may argue that this is strictly a head canon but I would argue that it is canon.

In “Too Far” Peridot has difficulty communicating with Amethyst and records an apology on her tape recorder because face to face communication is too overwhelming and she needs a disability aid.

“In Too Short to Ride” Peridot is at the amusement park with Steven and Amethyst and is frustrated because she can’t shapeshift like other gems. Which is a great allegory for disability and internalized ableism. (but that’s another post) she gets struggles to communicate her distress to her friends and instead uses her new Tablet to express her feelings by writing “Clods” multiple times on social media as well as snarky comments about shapeshifting.

Using a broad definition of AAC she definitely meets the criteria for being an AAC user even if she uses it very rarely. My personal definition is non speech methods of communication used when one would typically speak. (Excluding ASL as it is its own language) Under this definition both examples of her communication would be AAC. Thus making Peridot a canonical AAC user!

Note: I tried to explain AAC for people who only watch Steven Universe and what happens specifically in the episodes of Steven universe for people who only use AAC as I use both tags.