What It is Like To Have High Needs Autism, In Our Own Words

            Autism is a word for a million different stories. However, most of us struggle to be the storyteller. Instead, our stories are interpreted by our relatives, lower-support-needs people, or are not told at all. The goal of HNAA is to come together as a community of high-support needs autistic people to advocate on our own behalf. Otherwise, our stories often get spoken over by those who are more able. We can't speak for all of us, but we can provide a platform for us to speak.  

For this article, we asked our community of high-support needs autistic people to describe their experience, so that others can better understand what it’s like to have high needs autism. There are a variety of aspects to autism that are described below: developmental delays, social skills, sensory processing issues, restrictive/repetitive behavior, and rigidity. 

 

General Analogies 


-Having autism is like having cracks in the foundation of a building you're trying to make. If you're low support needs, the cracks are smaller but still important. If you're high support needs, the cracks are large and parts of the foundation are crumbling. Everyone is trying to build a skyscraper in life, but with those cracks it’s a lot harder for us to get as far.  

- Clown_17 (Level 2) * 


-With developmental delays (although developmental stagnation might be a more apt description), it’s a lot like I’m a Piplup holding an Everstone. I grow and gain experience, I learn new moves, but I never evolve (further develop) and gain better base stats and abilities.  

- Pieplup (Level 3)

 

 -Having autism can be like playing one of those trolling video games where the controls invert at random intervals. It's difficult to control, confusing, frustrating, and all-around not a good time 

-toukichillbsoc (Former Level 3 Now level 1)

 

 -My allegory for autism is that I’m a Shapeshifter, specifically, a werewolf. I struggle with staying out of overload, shutdown, and meltdown. When I go into these states, I feel out of control. I cope with this by using some of the other symptoms of autism. I stim sometimes in control, so that I don’t have to be a werewolf. I insist on sameness for the same reason. Same with interests, routines and rituals. That being said, I also do not always have control of my stimming and that is hard.  

- Dorothy4242 (Level 2) 

  

Communication 


-My roommate, myself, and our aides were discussing this recently for communication: it's like getting so drunk you can’t stand up, then put on headphones with music playing at full volume in a language you don’t understand. You turn on predictive text on your keyboard, change your keyboard to German. You then try to describe in English how to make a loaf of bread, without Google help, all the while spinning in circles.  

-CriticalSorcery(Level 3)

 

 -Communication basically is like I’m in the US, but I’m from India. People talk funny. They’re still speaking English, but they have different idioms, different cultural norms and such. Every time I do something, I don’t know if I’m doing the right thing and that’s hard. In India, they don’t like to touch others that much, especially strangers, like in the US. Also, sometimes I use a word that’s an Indian word, or the British English word, so people don’t understand me.  

- Dorothy4242 (Level 2)

 

 -One of the big things about being level 3 is that we don't have a primary language. All languages are secondary languages. I don't just mean normal languages like English or Spanish. Body language is a type of language. Social interaction/sociality is a type of language. The messages that can be inferred from actions is a type of language. None of it is picked up "naturally" as a primary language is, which is why we need speech therapy.  

The perspective and behaviors of level 3s becomes far more apparent when you think about what one feels, thinks, and acts when all language is foreign to them.  

-Toukichillbsoc (Former Level 3 Now level 1)

 

 -Communicating feels like being in a loud crowd with 5 people screaming your name, but you don't know where it's coming from, where to look, or who you should be focusing on. It's like being given a test in another language you don't know and everyone acts like you've been speaking that language your whole life. It feels like a job interview above your abilities, that you didn't prepare for, and you're meant to give answers that make sense.  

-somnocore (Level 2/1)*

 

Processing 


 -My range of what counts as "the immediate moment" is a bit wider than most people. Extra milliseconds of time add up, to the point where I'm processing with this "ocean of time" pushing against me. This makes my feelings more intense, unless I let go and stop trying to keep up with other people. 


I'm watching people in their own little lake sized bubbles floating past me. They are able to pass information, like harpoons, to everyone else's bubbles. They can't send the harpoons with enough speed and strength through my bubble without the information getting bent sideways. So all I can do is try to catch what the harpoons have written on them from inside my bubble. The harpoons thrown by people that are also in ocean sized bubbles can reach me more easily, but they're not designed to be thrown into the "lakes" of allistic people.  

-StrigoTCS(Level 2) *

 

 -Sometimes sensory issues can feel like when you've only slept for 3 hours, have been forcefully woken up and told you need to go to the store, but when you get there you realise no one's given you a shopping list and you're meant to act like that's okay.  

-somnocore (Level 2/1)*

 

 Rigidity 


-Cognitive rigidity feels like everyone else is driving a car, and I'm a train. They can easily switch lanes (change conversation topics or switch to a new activity) as soon as there's an opening, but I have to wait for a railroad switch (environmental prompt or reaching a "natural endpoint" to whatever I'm doing).  

-AutismAccount (Level 1 | Researcher)

 

  

*These quotes have been trimmed down/or restated so they are more easily understandable 


  

Our goal here at HNAA is to spread awareness of the experiences of high needs autistic people. Give them the tools and ability to advocate for themselves; to act as their platform. This is just the first step, on a long journey towards better representation for more severely autistic people. This is, in our own words, what life as high needs autistic people is like. 

  

 Written by Pieplup & Dorothy4242 

  

With help from MellyPantaloons and Snowqueenofhoth, and minor contributions from other HNAA advocates. Quotes were sourced from this reddit post. 

Comments

  1. Wow, wow, WOW!!! I cannot tell you just how much my heart and mind resonate with this Blog, Pieplup! Thank you for sharing this page with me. I hope to stay connected with this beautiful community of autistic folks. I have suspected for quite some time that I am Autistic. This wonderful Blog and the insightful comments from your community has caused me to reach out to my PCP to ask him to test me for autism. This could certainly answer an awful lot of questions, which have haunted me my entire life. Thank You!!!

    ReplyDelete

Post a Comment