aceshigh10987666

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When I was early on in my transition I got in a Lyft, and the driver was this big country guy. I was a little nervous so I just sat quietly in the back.

After a moment he changed the music on his phone to what sounded like a Hatsune Miku song. Curiosity got the better of me, so I finally spoke up and said “is this Hatsune Miku?”

And he said “Yep. You looked uncomfortable, and I know Transgender women like Hatsune Miku, so I thought it might help.”

I think about that interaction a lot.

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Please support this petition by Tu Chapman to protect trans and intersex people in Aotearoa New Zealand from attempts by the coalition government to redefine gender legally in bioessentialist terms.

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My question for RFK Jr. is, why does it matter? Why should anyone care about your opinion? Why? Because we need more workers? If that mattered immigration wouldn't be an issue. Because disabled people are expensive to support? I think that's what it is.

He's not honest enough to just say that he thinks every disabled person should have their supports taken away.

He targets an unpopular section of the disabled community as a test case. One with a limited ability to communicate and fight back.

Can he get away with persecuting autistics? If he does, why would he stop there?

He's not targeting autistics. He's using autistics as the trial run for targeting all disabled people.

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“do you miss me?” you let your boyfriend call me the r slur and then laughed. no i do not!! 😅

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Alicia, AAC user and autistic advocate, talks about Supported Decision Making.

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i wish people knew what a developmental disability was, and I wish people didn’t think intellectual disability made you undeserving of respect.

i am developmentally disabled. i am not intellectually disabled. while I am semi independent, i still need some external assistance for my developmental disabilities. i keep investigating programs for housing, job assistance, etc. for “people with developmental disabilities” and not qualifying because I don’t have an intellectual disability.

yes there should be programs specifically for intellectually disabled people. but do your research on what a developmental disability is before offering us services.

and STOP saying “oh but you’re not INTELLECTUALLY disabled” “but you’re not one of THOSE disabled people.” Intellectually disabled people deserve respect.

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I can't relate to the way people talk about autism online nowadays, and it feels incredibly isolating.

For example, I am glad that people nowadays can be open and celebrate their special interests, but I never had that and feel disconnected due to it. My special interests meant I was socially isolated growing up and trained through ABA not to speak about them unless asked, and to limit myself even then.

Same with stimming, growing up I always had very large stims and it was punished out of me, and now I have a skin picking disorder and don't know how to reconnect with stimming at all. I'm glad for people who can stim without worrying, but at the same time I don't share the experience and feel a bit odd about it.

The way people talk about autism in general nowadays also just doesn't line up with how I have experienced it, which is okay, I just don't relate to the community because of it. Autism for me meant developmental delays, needing help with basic self-care a lot longer than my peers, various speech disorders, facing discrimination from a very young age for being visibly autistic, growing up in SPED and ABA, not having my IEP followed and having no power to do anything about it, my parents fearing I'd regress in my skills and talking about sending me to a special needs home, learning disability and being unable to keep up with my peers in school, processing issues and being constantly overwhelmed by stimuli, needing to have noise cancelling headphones to manage being in public, having to switch schools because they couldn't support an autistic child, elopement, specialized schedules, autism therapies, and... a lot of shit that just doesn't get talked about in the online autism community, basically.

Which, I feel a lot of that is because most people in the online community are diagnosed late and "level 1"/"high-functioning"/"low supports needs"/whichever term you prefer, which is fine, but I also wish I knew of spaces for autistics which don't have that experience - I'm sure they exist, but I don't know of any and don't know where to look.

There's no point to this post, really, I'm just like... rambling, and maybe even hopeful that someone who reads this can point me in the right direction with where to find experiences like mine, and community. Others like me I can talk to. More space for people with medium and high supports needs. Stuff like that.

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How do you voice bank your voice?

What voice(s) do you use for your aac device?

I either use a voice banked version of my own voice or the Scott voice pitched down. I really like both.

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Anon that hates incontinence being associated with ABDL here again. Saw a dude in the replies being like “Oh but it makes me feel better and happy about my condition” dude, that’s fine. Just don’t tag it “incontinence”. Incontinence is a condition that anyone can have, including minors. Minors that will more than likely see your soaked crotch. Do your really want kids who just want to feel less alone about their condition to see it associated with kink? You really want minors to see your porn bc they have a similar medical condition?

Yeah that’s my main issue. Do whatever you want and it makes sense for you to use that to feel more positive about your condition. I’m genuinely happy about that. But for Gods sake tag your shit!!! Leave it in adult spaces and don’t try to completely conflate Abdl and disability.

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Hi!

I'm not officially diagnosed as autistic but I am on the spectrum from what my parents and doctors have told me. What does that make me?

You can call yourself whatever you want. You can literally just say you’re autistic. Do things that autistic people do to accommodate ourselves. Try out different supports like sensory aids or aac. You don’t have to prove you’re “disabled enough” to deserve them. There’s no such thing as disabled enough. If a tool helps you you’re disabled enough to use it. The main benefit of getting a professional diagnosis written on paper is for government services and formal accommodations in a university or workplace. So a paper diagnosis may make you eligible for certain supports if you qualify. These are things like disability payments and home and community based services. Home and community based services help disabled people live outside of hospitals and nursing homes. They might be group homes, paid caregivers, or day support which is a place people can go during the day for supported socializing and learning skills. Accommodations in the work place or college are adjustments so a person with a disability can succeed in school or work.

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I honestly get frustrated when low support needs people say that a professional diagnosis is a privilege. It’s true, but not in the way they think. Some of them are like “I need a professional diagnosis so I can finally get validation for myself and my needs.” But you don’t need a professional to validate you. I get why you want that, but you can validate yourself and take your own needs seriously. You don’t need a professional diagnosis for that.

Meanwhile there are people who desperately need a diagnosis for vital services and can’t get it due to cost. There are higher support needs autistic people who were visibly disabled as children who never got a diagnosis of autism or another developmental disability because of severe medical neglect.

I know people with higher support needs that have showed obvious signs of autism from VERY early childhood to the point schools repeatedly pointed it out. The parents never tested their children or listened to the schools’ concerns. I know a person with high support needs that was in and out of institutions their entire childhood and doesn’t have a diagnosis of autism because their adoptive parents hid or destroyed their medical records and tried to pretend they had a non disabled child.

These people are unable to get access to the services and supports they desperately need. They are left completely stuck. They can’t get disability benefits or paid support people because they don’t have a diagnosis. Most are only even alive because of a close partner takes care of them. If they had been diagnosed when they started showing obvious signs it would have been in early childhood or when they entered school.

A diagnosis isn’t a privilege for medium, high, and even some low support needs people. It’s a fucking necessity. When some medium and high support needs people don’t have a diagnosis they can die because they don’t have services and can’t care for themselves.

When a late diagnosed low support needs person who can mask very well and has a high paying white collar career doesn’t get a diagnosis they don’t get emotional validation and can’t wear headphones at work.

Ok I know that isn’t entirely accurate and I’m being harsh. I just want to show that the stakes are nowhere near the same. I know low support needs people struggle. But higher support needs people can literally die without support.

And when some people whine about “oh my precious validation” they miss the fucking point. They don’t understand how for lots of autistic people a diagnosis is the only way they can get support in any official way. When professional diagnosis is framed as a way to prove yourself right, instead of as a way to get services it hurts autistic people. Especially the most marginalized autistic people and autistic people who need a diagnosis out of necessity.

Also high support needs people who did get a diagnosis in early childhood are NOT privileged. The main reason they did get an early diagnosis is usually that their symptoms were so visibly disabling people couldn’t ignore it.

Calling a professional diagnosis a privilege feels like calling food or housing a privilege. Technically it is a privilege if you enough food because many don’t. But food is a RIGHT, not a privilege. Because it’s required for survival. For some autistic people a professional diagnosis is required for survival. So it’s not a privilege. It’s a right.

If anything making it until your 30s until anyone notices anything is wrong is the privilege. Because that means that your autism wasn’t causing a significant delay in milestones like talking, toileting or other activities. There may have still been some delays looking back, but they weren’t so obvious that everyone noticed and intervened.

So a professional diagnosis is necessary for lots of autistic people and framing it as a privilege makes it seem like it’s something you’re lucky if you have. But for many people a professional diagnosis is their only option. A diagnosis is a right. And people can die without one.

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I wish that verbal communication wasn’t widely seen as the only valid form of communication. I wish that people would be willing to accommodate for me using AAC. I wish that my family didn’t see me using AAC as an “excuse to not speak.”

Why does it matter that I constantly have trouble with speaking? Why does it matter that I sometimes can’t speak at all? Why does it matter that I want to use AAC as a substitute for speech when my speech clearly isn’t up to par? Why does me using accommodations for anything matter that much?

If anything, shouldn’t you be glad that I’ve found a method of communication that works for me? Shouldn’t you be proud of me for the fact that I was able to find this on my own? Shouldn’t you be proud of me for taking the initiative to accommodate for myself?

Speaking is one of the most exhausting things for me to do, and yet I’m expected to just keep doing it as if practice is the thing that’s going to make it any easier for me. As if I didn’t have a speech delay as a young child and as if I don’t literally have Autism, which affects one’s ability to communicate. It makes me so angry to think that people don’t want me around unless I fit the bill of being perfectly normal in their eyes, when doing so has just made me miserable and burnt out. I’m tired of being told to conform to other people’s standards, as if they actually mean anything in the real world.

I wish I wasn’t made to speak on so many occasions. It’s to the point where I sometimes don’t even speak, even if I really do have things that I want to say, because people think that using AAC is just an excuse to not use your “real words.” It makes me so upset, but people don’t care. People only care about what you have to say if you’re able to say it verbally.

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Not all level 1 autistic people have low support needs.

Even if someone’s autism doesn’t cause significant problems for someone to do basic activities of daily living, live independently, or maintain safe behaviors, another condition might.

I’m autistic. My level when I was diagnosed at 17 (I’m 21 now) was level 1. While I don’t feel like this is entirely accurate to how my autism affects me now it’s still my diagnosis.

But I have other things going on with me. I have severe depression that has resulted in multiple hospitalizations. I think like 7? in the last 3 years. My mental illness is so severe that I am frequently at risk of being hospitalized, and when I am hospitalized it’s usually for a week or longer instead of the normal 5-7 days. I’m worried if I can’t stay out of the hospital for longer periods they might recommend a residential placement, but luckily that hasn’t been on the table yet.

I get to the point where I get nervous sharing my autism level publicly online because I get nervous people will think I’m low support needs. But that isn’t my reality. I’m definitely not high support needs. I don’t need constant care and can do all my every day hygiene without any physical support. But there’s a lot I can’t do.

I can’t live independently without being hospitalized within 1-2 months. I can’t maintain employment without severe mental decline leading to hospitalization. I can’t maintain safe behaviors like not hurting myself for long periods of time. I can’t manage my own medication because of safety risks. I can’t keep my space clean. My ptsd is so bad that often times I can’t say no with my mouth. I am eligible for home and community based services. Which in my state requires that a person needs a nursing home level of care.

There’s a lot of things that I can do. And I’m very grateful for that. I’m nowhere near the most disabled. But when people compare me to people who can live on their own and mask and work without completely breaking down I just feel like I can never measure up. My life feels like it’s not amounting to as much as other level 1 autistic people my age and I feel like it’s because I’m not good enough or trying hard enough.

But there are lots of disabilities than can cause a person to have severe problems with independent living and daily activities. A person who is mostly bedbound due to a physical disability doesn’t have low support needs just because they aren’t autistic or are level 1. A person with severe mental illness who is living in a group home or state hospital doesn’t have low support needs.

I think in the autistic community including the medium and high support needs autistic community we need to take into consideration other disabilities more when we think about who needs which levels of support. Just because someone doesn’t need lots of support with their autism specifically doesn’t mean they don’t need lots of support in general or with our other disabilities.

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I wrote a letter to my state legislators and I want d to share it here because I’m very proud of it.

My name is Perri and the intellectual and developmental disability waiver is a very important issue to me. I am autistic and have been on the waiting list for the I/DD waiver for three years. If nothing is done about the waiting list I will be waiting seven more years for crucial services that would help me live in the community

All adults have the right to choose where they live. That includes adults with intellectual and developmental disabilities. Without home and community based services provided by the waiver, my right to choose where I want to live is extremely limited. I am currently unable to live completely independently because without any support I stop eating regularly, taking my medication, and doing basic self hygiene as often as needed to maintain cleanliness. Not taking my medication as prescribed makes it extremely difficult to maintain safe behaviors. When I tried living apart from my parents these unsafe behaviors became so unmanageable that I was hospitalized within the first two months of leaving my parents home. When I am very overwhelmed or anxious I self injure by hitting my head and biting or scratching myself. Even though I need support to stay safe and live in the community I still deserve to have as much choice and normalcy as possible for me.

I’m a twenty-one year old adult and I want to have the same adult experiences as non disabled adults. I want to live in my own apartment. I want to go out and do fun things without my parents being in my business. The same wants that non disabled adults have are often the same wants of people with I/DD. We long for independence, freedom, belonging and relationships just like people without disabilities do. The main difference is the support we need to achieve these things. That’s where home and community based services come in.

Home and community based services are a group of different services designed to help a person who is determined to need a nursing home level of care after going through an eligibility process. The services that make up home and community based services are varied and are tailored specifically to the needs and goals of the individual receiving care. The services provided can include day services, residential services, PCA services, respite, supportive employment, and case management. These services allow people with I/DD to live in the community with their goals and preferences in mind. The positive effects of these services in the lives of people with I/DD cannot be overstated.

Day services are programs where disabled adults can go during the day to socialize with other people with I/DD while receiving appropriate physical and mental support. These programs typically include learning life skills and doing fun things in the community. They also operate from Monday through Friday during the day with similar hours to nine to five employment. This can provide extra support for someone who is a primary caretaker who works because they are able to leave their loved one during the day without worrying about their safety or the care they’re receiving. This can significantly help families have peace of mind and avoid caregiver burnout. Another option for services are residential services.

Residential services are services where people with I/DD live somewhere in the community that is managed by a service provider, usually with round the clock supervision. Some examples of residential supports are group homes and apartments that are owned by a service provider and have staff that work there to support people. Having access to residential supports is very important for people with I/DD that have high medical and behavioral support needs. Sometimes individuals have behavioral needs that make it unsafe for themselves or others to live in the family home. Without residential supports these people would most likely need to be placed in a state hospital or other institutional placement.

Personal care attendant services also called PCA services are when a paid support person comes and gives care in the person's own or family home or the community. This allows a person to receive support in the environment where they are already comfortable. Staff can help with various things like cooking, hygiene and going with the person in the community for grocery shopping and other errands. There is also an option for people to direct their own care and hire their own support people if that works best for them. This gives people more control in the process of receiving care. Support people often support people in very intimate moments including showering and toileting, so having trust in your support person is critical. Self direction allows people to choose their workers and hire people they are comfortable with. PCA services allow people to live where they want and have choice over their care that may not always be available in more restrictive settings. But just because someone has significant disabilities doesn’t mean that PCA services aren’t for them.

Respite services offer short term care for people with I/DD to give the primary caregiver a break from caring for the person with I/DD. This care is for a very short period like during the day one day or overnight for a few days. This allows parents or other unpaid caregivers to take time for themselves to do things that they need. A caregiver may use the time to do errands that are difficult to do with the person with I/DD. They may have a date night or similar social engagement . They might even rest because they are so overwhelmed and need a break. Respite is a safe place for their loved one with staff trained to support people with I/DD. Even the most dedicated supporters of people with I/DD need breaks for their own physical and mental health. Preventing burnout of both paid and unpaid caregivers is important for people with I/DD. Sudden and frequent changes in caregivers can be very stressful.

Supportive employment services provide support for people with I/DD to access competitive employment in the community. Many people with I/DD want to work in the community and make money, but are unable to maintain a job that pays minimum wage or above without certain support due to their disability. Supportive employment typically includes a support person helping with social aspects of work like communicating with supervisors, staying on task, and cuing for the steps the person needs to complete. The person providing supportive employment services does not perform the work for the individual with I/DD. Instead the person supports the person with I/DD to perform the work themselves. Having a job and earning money can be very important for people with I/DD. It can give them extra spending money, a schedule and a sense of accomplishment. Some people with I/DD can be very successful in competitive employment with the correct support.

The final support provided by the I/DD waiver is case management. Navigating support systems is incredibly difficult even for people without I/DD. A case manager helps people navigate the I/DD system and assists in filling out paperwork and coordinating waiver services. The case manager also works with the person to develop a person centered plan to make sure that the services they are receiving are in line with their wants and goals. The case manager is the person who helps advocate for people with I/DD and makes sure all the complex parts of the I/DD system are working to support the individual like they should be.

All of these services are vital for the health and independence of people with I/DD. That’s why I strongly urge anyone reading to support initiatives and policies focused on ending the I/DD waitlist. Kansas Council of Developmental Disabilities suggests a plan to fund five hundred new spots on the waitlist and reduce the cap on the waitlist even further to thirty-eight hundred slots. Another way we can reduce the wait is by investing in the new community support waiver that would provide services for people who need less support to free up space for those who have high support needs on the I/DD waiver. We are also working towards increasing funding for people who work with people with I/DD to reduce turnover. These actions would be a huge step in the fight to eliminate the wait for Kansans with I/DD. Because everyone has the right to live in the community. Let Kansas with I/DD access the same rights as every other adult. End the wait!

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i think that when people see a person with a severe mental illness being "noncompliant" (e.g., not taking meds, triggering themself, falling back on unhealthy coping mechanisms, self harm, self injurious behaviors, eloping, "refusing" to speak, what have you) they see the reason behind the behavior as being difficult on purpose and automatically jump to, well this patient obviously doesn't want to get better so i should treat them accordingly.

as someone who struggles with a severe mental illness AND is "noncompliant" i promise that is not the case. evidence?

reason i have not taken my meds/gone off them:

side effects were impeding my every day life

they weren't working and i would rather not put something in my body that doesn't help

the illness i was being treated for convinced my brain that my meds were poisonous and if i took them i would become sick or die.

demand avoidance (read: the notion that i was expected to take my meds caused so much distress in my body that i would do anything NOT to take them, so i don't

reasons i have done "difficult" behaviors

i wasn't able to communicate how i was feeling other than physically expressing it with self injury

i was being abused and the stress that the abuse caused put too much pressure on my brain to react in a "healthy" way

i could not distinguish reality from unreality and the stress that that caused put too much pressure on my brain to react in a "healthy" way

the topic of group therapy put so much stress on my brain that i could not stay in group and left

the environment of group therapy was overstimulating and that put so much stress on my brain that i left

i think the reason that medical professionals see and label these behaviors as "being difficult" or "noncompliant" is because they either fail to see or refuse to consider the environment in which these things occur.

maybe they are desensitized to the pain that we experience because they see it every day, but that does not make it less real for us.

my struggles do not exist in a vacuum. and i wish people would see that.

to my brothers, sisters, and siblings with severe mental illnesses and noncompliant behaviors. i see you . i love you. i know the distress and pain you are in. i am sorry they are not listening to you. i hope your pain eases soon.

(also note, this is my experience as someone w autism, psychosis and "dissociative and cluster b traits" [whatever the shit that means tbh]. i am also white, which means i experience less discrimination in the medical field than a person of Color. )

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if you’re autistic (even if you’re white, able to mask and fully speaking) you’re much closer to people with intellectual and developmental disabilities than you ever will be to neurotypical society. Include people with I/DD in your activism. Don’t separate yourself from us. I’d go as far as to say all autistic people have a developmental disability. You don’t have to identify that way, but really think hard about why you’re choosing not to. Autism is a Developmental Disability and and by separating yourself from intellectual and developmental disabilities (I/DD) you are throwing autistics with higher support needs and autitistics with intellectual disabilities under the bus. (Signed developmentally disabled autistics without ID who are considered developmentally disabled by the state)

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Just your reminder that mental age isn’t real and hurts people with ID and developmental disabilities. Please stop saying it’s real.