#severe autism

[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[there be outdated language.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.

[turtley-ausome]

Some my “baby” toys and fidgets i love! There so nice and comfoting.

For me i prefer baby toys over fidget toys, baby toys are so more colourful and so much more playful

[rurustims]

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.

[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.

[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:

[sillylandmagic]

I no longer have severe autism. but I grew up as until 10-11 years old.

I went through intense early intervention. OT PT Speech pragmatic therapy. soon after starting preschool at 3 years old. I was diagnosed with classic autism around 2010 to late 2012. which is what is now described as level 3 autism.

I was minimally verbal and could not express my needs. I had severe communication issues. I had severe social impairments. significant repetitive and restrictive behaviors. no danger awareness.

I had AMAZING aids and therapists who worked with me intensely and empathetically. I have not been reassessed since 4th or 5th grade I believe. but I am 90% sure that I would better fit the criteria for moderate autism / level 2 autism.

while I am no longer considered to have (I believe atleast) severe / level 3 autism. I do have the experience of being severely autistic.

[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]

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

[pixierainbows]

Pixie been trying out new therapist for some months now . who have already have experience with people like Pixie .

This therapist do seem be familiar with cognitive and intellectual disability , and of severe early childhood trauma .

Pixie said want 2 things . the right diagnosis word . And . How to fix them things that happen That Pixie not remember .

Today finally therapist said the diagnosis words and Pixie is ? panicking ? overwhelmed. Not want that word , need something easier to fix … and … Something more simple so Pixie can understand

Is dissociative identity disorder . and . therapist sounded very sure . Guardian Wizard also think same .

Pixie maybe … scared ? or . Some kind of upset . not understanding not remembering . is so hard , scary , angry frustration, something like.

what is Pixie supposed do now ??

[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.

[pulsar-ray]

happy Pride month ! ! here is your reminder that intensely / severely / big / whatever word wanna use Mentally Disabled people CAN use whatever label/exoression they want because they have the same autonomy as You !

yes this includes Kink

includes Gender

includes HRT

includes Sexuality

includes Romance

includes Neo/Xeno labels

includes those who Can't understand gender sexuality etc because STILL have autonomy to do whatever want

includes EVERYTHING & EVERYONE

!

[rurustims]

"autistic people wont/dont use baby toy" "ew wtf autistic people dont need pacifiers" wrong . this heard quite a bit in the past occasionally see in autism space online by LSN Autistic folk and this pretty ignorant and rather ableism to me, what about us autistic folk developmentally delayed a lot? those behind milestones more heavy? those who still feel very very young or have intellectual disability and are higher needs autistic so attached to items seen for babies / young children? those who need that sort sensory input nothing else help them? so so many dunno, tropes? dont have word, opinions? statement? out there about "autistic people dont" "autism not like this" and it all just LSN folk basically say not case for them and not include fact there more heavily impacted and higher need people than them, this stuff very real that are needs for people linked to their autism saying general that its not seem quite harmful to me

[dysmotility]

you don’t have to necessarily agree with someone’s take to think their voice is important.

right now i’m seeing some discourse about the different access needs disabled ppl have, like physical access needs vs. sensory needs.

i don’t necessarily agree that late dx’d autistic folks are choosing to make their disability a big deal, i do think that our voices tend to take up more than our share of space i. the autism community. we tend to center our own experiences and not consider the overt isolation and dehumanization of growing up segregated because of a disability.

i will always support the most marginalized, and that includes the visibly, cognitively, and intellectually disabled.

[birdofmay]

Everyone:

If you get an ask about Facilitated Communication (FC) or Rapid Prompting Method (RPM):

Ignore it!

This person isn't interested in us, they are harmful. And they want to shove their political agenda on us.

Don't respond to their ask, block them!