#severe autism

[sodaslug]

big big reminder that high support needs / severe autism / level 3 autism folk aren't very straightforward narrow topic too . we rather big spectrum as well !!! some us need very specific type supports than another some us need multiple caretakers ect !!! and reminder that just because high support needs / severe autism / level 3 autism person learn to do or can do a task independently doesn't mean theyre lower needs now.

i know level 3 autistic guy with severe cognitive impairment who can unload and load dishwasher by self, set plates on table for meals and wash body most well independently but with supervised in the room for safety, but that dont make his support needs and autism level lower he still cant take care of himself by own, cant go out home by self, cant shop by self, cant drive, doesn't understand stuff same level others do, still need that carer for life.

so please remember autistic people who high need level 3 severe ect not monolith too we are all different, different interests, different abilities, different ways of supports too!!

[pixierainbows]

wish for smart autism people to STOP saying things like "most autism people actually smart ! ". is not true! is just so erase big part of autism community ! of people like Pixie, and intellectual disability autism people !

STOP say , is not okay ! people like Pixie, people with intellectual disability , are BIG part of autism community ! we deserve be part of own community !

STOP try push out of community, is ableism !

[five-thousand-loaves-of-bread]

always interested in autism community history n archive… especially high support needs / severe / low functioning / etc self identifier part of community history. we always been here we always will be n this include high support needs & severe & etc people. even back when resources n aids n techs n therapies n knowledge not as good as today we still there.

anyways. when do some searching, found old blog of person in UK with (to use word used call self) severe autism & mild intellectual disability & severe challenging behaviors & epilepsy causing todd’s paralysis n wheelchair user. unfortunately last blog update 2014, n hope doing alright, n it hard see when first ever blog. but. at least 28 by then, n been on Wrong Planet (older autism forum website that.. has its issues) since 2003.

it nice see “elders” of community talk about much of similar thing as we are today. we not so different. n it sad see it too. not much changed.

“the challenges of severe autism;low mental capacity with rigid thinking”

“the challenges of severe autism;needing behavior friendly furniture”

“being LFA and against the idea of personaly having a 'cure'”

“a communication barrier of severe autism; pain”

“the use of retard,and what intelectual disability is all about”

“the imbalance of respect in the autistic community”

“the consequences of poor restraining”

wrong planet for those who like archive.. can’t look through it personally bc no account

[there be outdated language. it 2014. n also disabled ppl allow call self whatever they want including severely disabled severely low functioning people. know people who call self that now. if you so hung up on “right language” you refuse bear through your own discomfort to read through people actually living it then assume you part of problem.]

[zebulontheplanet]

Saw a post and it really got me thinking.

The post was talking about why don’t lower support needs, higher masking individuals even believe that higher support needs, low masking, “severely autistic” people, exist. And that got me really thinking. Because, I do think they know we exist. I just don’t think they want too.

I don’t think they want to know we exist. They know we exist, but keep us on the back burner. They live in ignorance bliss of us. I have what some people would think of as severe autism. Im nonverbal (although nonverbal later in life. But outside people don’t care about that. They see nonverbal as nonverbal), I’m intellectually disabled, need help in everyday life, etc. but I’m in the middle. I’m moderate support needs. To me, I’m not severely autistic. But to society, I am considered and seen as severely autistic because society doesn’t have the understanding of moderate autism yet. They don’t understand it. And I’ve seen more times than I can count that severe autism doesn’t exist. Not because they don’t believe in severe autism the label itself because it’s “harmful” but because they don’t believe that it’s just caused by autism. They often believe that’s it’s caused by comorbidities. Like ID, or cerebral palsy, or apraxia/dyspraxia, or mobility issues, or genetic conditions, and so on. Although none of this is bad.

They believe that autism itself can’t create severe autism. Which…isn’t true. Before, it was believed that severe autism was the only type of autism. That it was the only type that existed and if you weren’t severely autistic then you weren’t autistic. Then more research happened, then social media happened, and now..white, lower support needs, high masking, late diagnosed individuals are the majority of what’s being centered. And, that isn’t bad. We need awareness of all autism. But when one type of autism gets centered, it becomes a problem. It becomes the new norm. It becomes what everyone expects out of autism now. Which, isn’t true. Autism all of all types and traits exists. Autism of all support needs exists.

When people say severe autism doesn’t exist, they’re ignoring and saying that a BIG percentage of autistic people don’t exist. They’re saying that we aren’t real. That we aren’t on the internet, or in the communities they live in, or in their schools, or whatever. We’re everywhere. Severe autism is still a thing. It isn’t a misdiagnosis. It isn’t from comorbities, although if someone’s autism is more severe from comorbidities then that isn’t bad.

I think a lot of people need to be more aware of severe autism. And not just severe autism like me or my mutuals, or the people you see here on tumblr. But the ones with even MORE severe autism. The ones who live in group homes, residentials, institutions, and so on. The ones who aren’t on the internet. The ones who aren’t here blogging about their lives. We need to be aware of them too. We need to believe they exist, and believe that their autism is real.

Don’t erase severe or profound autism.

[bunny-loves-stars]

I remember last year, because I had no support and no actual 24/7 care, I didn’t have showers for weeks at a time, didn’t change my clothes for weeks, never brushed my teeth, i could only eat what I could cook which was toast and cereal, I had go through sensory overloads with out headphones, fidget toys etc because “ I didn’t need them.” I couldn’t even leave my room because of transitions , no one to verbally prompt me, no one to physically help me, because my old caregiver believed I had level one autism and convinced everyone else that I had “mild autism” and it’s not true, I am in the middle of level 2 and 3, that’s one way how neglect can happen to autistics, high support needs autistics are high support needs even without support

[vampjasper]

A sentiment I see sometimes, mostly in the high masking level 1 LSN autistic community, is the disdain for all labels about how impaired you are, especially the autism levels and support needs.

A lot of what I see is people saying they're bad, there's no need for them and that they have no use, that they're basically functioning labels and ableist, that we shouldn't be comparing ourselves and each other, and that they somehow don't include high masking people.

None of these things are true, they ignore the fact that often these labels are self-identifiers, and honestly, I think when having discussions on terminology like autism levels and support needs, the voices of levels 2-3 and HrSN people need to be centred. We're the people who need these terms, we're the people who often depend on them to actually communicate our needs, so when people go around saying these terms are bad without having so much as an afterthought about us it is really upsetting and hurtful.

I've seen people say we don't need the terms because we can just explain the supports we need as if it was so easy to do so. Many of us have such complex needs that trying to explain them all the time isn't possible.

[nonspeakers-r-us]

Nobody talks about episodes of uncontrollable emotion and dangerous behaviors in severe Autism.

I apologize for the long post. This is important to me. Heavy CW for mention of knives, self-injurious behaviors, description of intense emotions, brief descriptions of restraints and police. Yes, I used the word "severe" to describe my Autism. This is because I am Nonspeaking, very High Support Needs, visibly Autistic, and have a Borderline IDD. This is how I choose to describe my Autism. Please don't attack me for this, Tumblr. Anyways. Darting out into busy streets. Repeatedly banging your head against walls. Throwing objects, sometimes even very dangerous objects such as knives. Breaking things - anything - no matter the value or durability. Unplanned, sudden violence towards self and others. Lashing out, in pure emotion, just screaming into nothing at the top of your lungs, for no obvious reason other than pure, unadulterated, terrifying emotion. This may not seem like symptoms of Autism for anyone, and they may not be caused by Autism at all. But for many young people and adults with severe Autism, this is what our families deal with regularly. "Difficult behaviors", as I've often heard them described as by social workers. There's often no clear reason for then. They just. Happen. We are almost never diagnosed with secondary conditions. It is considered a symptom of our severe/profound Autism. While in many Speaking and Low Support Needs people with Autism, they would be diagnosed with various conditions. Conduct Disorder. Bipolar. Borderline Personality Disorder. Maybe even a severe case of Intermittent Explosive Disorder. But for those of us on the more visible part of the Spectrum, nobody knows how to deal with us. It's scary and heartbreaking for our families, and deeply traumatic for us. Many times, our families and caregivers will turn to emergency services such as police or EMTs when they have no where else to turn. I don't like this option, I hate it. But in moments of extreme panic and fear, I don't always blame families for this. Nobody talks about those of us who have been restrained by our arms and ankles to hospital beds for weeks at a time. Nobody talk about those of us who turn violent on the people we love most, when we just can't control ourselves. I wish I had good advice for those of us struggling with this. I wish I could comfort you. While mood stabilizers and antipsychotic medications have helped me, it doesn't help everyone. DBT for severely Autistic individuals is another thing that greatly helped me. This is a fact of life for many individuals with severe Autism and their families. It's terrifying. But please keep trying treatment, keep advocating for yourself as much as possible, and keep going. I'm sure you don't think this means anything, but you are strong. You are brave. I see you and I want you to keep going. Nobody talks about episodes of uncontrollable emotion and dangerous behaviors in severe Autism.

[turtley-ausome]

Had a meeting this morning with DDS MFP group home people one is same lady i met last time and then her superviser and a nurse part of the team came too it was good meeting im very happy about that! They said when I get into group home i can choose what colors they paint my walls i want pink and purple! And i can probaly get a bubble tube and sensory swing for my room eeeeeeeee! And my mom will be able visit more they said becase group home can help for transportation! I cant wait for when i fiNALY have a home! So sick of living in hospital institution !!! We also talk about my allergies becase i have mint allergy makes it very hard to share a bathroom. In past was told maybe i get master bedroom in a group home as accomadation for this sinse it has own private bathroom plus need bigger room becase i have two wheelchairs!

[birdofmay]

Important: If a person on Tumblr says that somebody else writes your posts for you, and wants you to prove that you write everything on your own:

Don't respond. Don't upload a video of you typing or using your AAC device. Block that person, or ask someone to block them for you.

They won't listen to you and you can't convince them. They're just mean. It's spam. Really, just ignore them.

Here's a long post I wrote about that today, in case you're curious:

[sodaslug]

me: "im housebound because of my **severe autism**, intelectual disability and also physical disabilities plus chronic illness. but autism is a big massive reason for me being housebound"

them: "are you in a wheelchair? im curious on why you can't leave your house"

sigh. no. im not in a wheelchair — i SHOULD be, but i cant because of neglect. also, being in a wheelchair ≠ to being housebound.

ALSO ! i just said that my autism is the big reason why im housebound, this seems to never make any sense to LSN Autistic people . never . whenever i tell them, that my autism is a big reason im housebound, they will come at me with "are you in a wheelchair then?" "can you not walk" or some variation. please educate yourselves how autism can truly impact ones life, i don't NEED to be in a wheelchair to be housebound or something.

[pixierainbows]

Pixie not understand how is so many people in this country choose somebody make speeches about make program for killing murdering people same like Pixie .

Scared is not strong enough word for these feels .

Kill as in directly murdering . or . by shutting down the social services Pixie depend on to stay alive . both were “ promised “ , both would destroy Pixie life .

why people so full of hate … ? not understanding . just . cry cry cry . all day . missed art studio time .

[five-thousand-loaves-of-bread]

there nonverbal level 3 severe profound autistic kids (many with ID) who will never ever able functional communicate even with best therapy best support best assistive device out there

there nonverbal level 3 severe profound autistic kids (with/without ID) who later learn communicate and/or mouth speak but many outside behaviors still look same still high support needs

there nonverbal level 3 severe profound autistic kids (with/without ID) who later learn how mouth speak who now adult cannot ever tell if autistic at all not to mention ever was diagnose level 3 severe profound nonverbal

there kids without functional communication who grow into adult without functional communication

there kids without functional communication who grow into nonverbal adult who use AAC communicate

there nonverbal kids who grow into nonverbal adults

there nonverbal kids grow into speaking adults

how your kid at six not mean will be same as adult.

but also there people who nonverbal level 3 severe profound at 6 and still largely similar at adult.

and also regardless how future adulthood look, still need advocate for those diagnose nonverbal level 3 severe profound six year old

one not erase other. both true.

[arquaticdreamer]

Cloud hates every time bio toxic family keep asking Cloud to change AAC voice to cookie monster, or some silly fun voice. Like what the hell!?!? It's not a toy AAC is my voice. Stop trying to grab and play with my AAC.

[bunny-loves-stars]

Sadly couldn’t go to Christmas fireworks, because my caregiver knee was really hurting, but my sister with low support needs could go with her friend. I was really jealous, because the only way I could go was with my caregiver not my friend , and I got upset, it wasn’t my sisters fault, I just really love colours and fireworks, but there would be a lot of people anyways so I probably wouldn’t of even gone anyways, which sucks, very sad

[tiggerific13]

Hi friends! Me 99% sfw, 100% Adult. Ze/zir pronouns

Multiply disabled. Needs help with all IADLs and BADLs

Me use no, low, and hi tech AAC

Please nice here my safe space online.

HSN nonverbal autistic; nonverbal =/= nonthinking

Moderate/severe IDD; delayed =/= never learns

Epilepsy, TBI, Aphasia, ADHD

Blind; blind =/= no vision at all everything dark

Quadriplegic CP, ME/CFS, hEDS, Fibro, etc

Autigender, Intersex, Asexual, Poly

Married to my Caregiver of 10+ years

Fav Stuff - AAC, Spinny stuff, Ketovie 4:1 peptide, gtube, Rifton Pacer, Stitch

Loves - Space, Animals, Slime, Music, Stuffies, Blanket, Swing

Fav TV - Barney, Tigger, Disney, Nick Jr, Sesame Street, Minions

My words change lots because my disability what aac use if it bad brain body day how much help have if autocorrect stuff help how much fast type how much time me think and go over words etc etc. Me maybe look act type “childish” but me adult

My life have super unique good and bad but me most love where at now but sometimes sad nobody irl understand me but happy tumblr have other nonverbal people with IDD and multiply disabled

[turtley-ausome]

Finaly got screwdriver and help and got the new pink frame case on my Accent AAC device yay its so prety!