forum I have a few questions about Autism.

Started May 31, 2021 by Deleted user

tune

Edit topic

So I have been thinking of making a character autistic, and I need the perspective of someone who does have it, or someone who is knowledgeable in it. My questions are :

1. How exactly do you get diagnosed? What happens afterwards?
2. What is your day-to-day life like? (This question can be optional if you want to)
3. What is the best way to deal with sensory overload? What do you do if you can't remove yourself from the situation?
4. Is there something you wish was shown about autism more in media?

I want to portray autism accurately and respectfully, so if you have any advice or criticism, please give it!

Okay, I can help with this!

I got diagnosed with autism when I was about 14-15 years old, I think I was in high school at the time. Mostly they just had me talk to the school psychologist, get a few tests done (they have names, I just can’t for the life of me remember them! It could help to look into that, I’ll do that in a minute), then we had a big meeting where they said that I was autistic and talked with my parents to get accommodations. Now, my school was very accommodating and also very white, myself included, so it was easier for me personally to get a diagnosis. They also sent me to a behavioral doctor to get it confirmed, but in real life that sort of thing tends not to happen, any of what I just said, especially with children and adults of color and girls. I was presenting as a cis woman at the time, so it was harder to get me diagnosed but we got there. My mother also got diagnosed for autism, my father for bipolar, and if you have any questions it mostly boils down to they talked to a good few hundred (hyperbole, maybe it was about 4 for dad and 7 for mom) doctors and psychologists, and then took a test or two for mom, and what do you know? Autism. Now, I am on the “lower functioning” side and along with my POTS it’s hard to tell what symptoms are what, but I’ll try.

I used to have sensory overloads all the time as a kid, but I barely remember how I dealt with them because now I don’t deal with that sort of thing. I barely get overloaded at all, and when I do it’s more just “this sound is bothersome, turn it off and my ears will feel less like they’re being physically scraped”. I have the opposite of sensory overloads, I get underloaded. I crave constant stimulation because I don’t really feel much stimulation at all, and so if I’m being honest I tend to do a lot of risky things. I used to cut myself to feel something. I also have very bad depression and anxiety, both linked with my autism interchangeably because a lot of symptoms for depression and anxiety crop up when autism is around. I also am terrible with people, I write them well but don’t read them well is my problem. I love writing stories because you can actually figure out fictional people, who they are, what motivates them, but in real life it isn’t so simple because there’s a lot more barriers and variables. So I tend to avoid social situations with non-autistic people, people like me are a lot easier to read.

Sorry if this is going all over the place, I’m sort of just randomly firing off everything I know about myself. Anyways, routine is a big thing too. I’ll cry if I haven’t had at least two cups of tea before 11 and after 10:30. I take showers for exactly 15 minutes each on Sundays. I have to completely lick off a spoon before I take another bite of ice cream. Plans must be made two weeks in advance to follow through on them without panicking. You get the deal. So anyways, routine is ritual, routine is everything and what’s worse than a sensory overload is not being able to follow a routine.

Now, I’ve been getting looser with routine since I’ve been spending more time here, but that’s more out of an anxiety of not getting anything done and people hating me over actually working out routine. And I’ve been really stressed since then!

Anyways, if I were to pick anything shown about autism in media, it would be how absolutely crazy and strange we are, no joke. Show the ugly parts of autism, the parts that make Karens and “autism mommies” want to pretend we don’t exist. And show it lovingly, treat us like we’re disabled, not inconveniences. Also, more weird autistic trans kids/kids of color/physically disabled kids/Jewish or Islamic or Buddhist kids, etc/all of those but adults, show the rainbow of diversity that is autism and don’t use Sheldon Cooper BigBangTheory or whatever as autism. Also, more evil autistic characters where their evil comes from like, being evil and not being autistic. More autistic people in love! I’m certainly capable of love, even if I can’t grasp empathy. I love my girlfriend with the world!

Sorry if those don’t help much. If you have really specific or even potentially offensive questions I’d be happy to answer them!

@doriandrabbles Thank you, this is the answer I am looking for! Most questions about autism online only seem to be answered by relatives or friends of people with autism, and not the person themselves. Those are good too, but don't answer very accurately/are rather condescending-sounding, honestly.

The person I am writing is a young teen and I am not fond of romance, but I will try my best for other autistic characters. And yes, everyone in my story will be weird and diverse. :D

I read in research that some people have gastrointestinal disorders-is this true? Are there certain foods you simply cannot digest? Sorry if this is weird in any way.
This was very helpful!

I mean in my and my autistic friends’ experience not really? If you have GI problems that run in the family then maybe, but I’m not sure if it’s autism or just plain bad luck. I’m lactose intolerant but then again literally everyone on my dad’s side is too, so I’m pretty sure autism is mostly just a brain thing.

I haven't been diagnosed but I have my suspicions that I'm probably (definitely) not NT, however, @/autisicats on Twitter and Instagram is a great account that brings to light lots of autistic experiences that aren't always widely discussed. They're worth checking out if you want some more insight.

@AloeVera Thanks! I will check it out.

Hey, I can help with this too :)

How exactly do you get diagnosed? What happens afterwards?

I was diagnosed by some kind of doctor. I don't know what his exact title was, but probably like a psychiatrist or something like that.
As for what happened afterwards, it was kind of weird for me because I was told that I had aspergers (we don't use that term anymore, but that was what I was told at the time) but I was never really told what exactly that meant. My parents were like "Yeah, Temple Grandin has it. She thinks in pictures." And that was confusing for me because I don't really do that? So for me, it wasn't like this life changing diagnosis. I was never really told what it meant, so I never really knew that so many things that I do could be explained by my autism. Life just kind of continued on as normal for me.

What is your day-to-day life like? (This question can be optional if you want to)

It's probably not much different from most people's day to day life, tbh. I wake up, I make breakfast. Depending on my work schedule I either go to work or go see my horse (I mean I guess that part isn't really part of most people's day to day life).

What is the best way to deal with sensory overload? What do you do if you can't remove yourself from the situation?

Honestly, I don't really experience sensory overload. Or at least I don't think I experience it. For me, sometimes loud noises really bother me and I have a hard time focusing until it stops, but I don't know if this is just sensory overload or like normal human stuff. Mostly, I just try to keep going with what I'm doing until it stops.

Is there something you wish was shown about autism more in media?

Just autism in general. It's so sad, I really want to read a book or watch a movie with an autistic protagonist but there's like nothing out there. Most of what we do have is really not well done, and ends up either really ableist or just not very accurate (or god forbid, both).
@doriandrabbles already mentioned more diversity, which I'm going to second because it's a great point. And tying into that, I'd love to see more female autistic characters. Pretty much every autistic character I can think of is a male, and autism is also really under-diagnosed in girls, so I think that having more female autistic characters is super important.
Another thing I'd like to see is more creative autistics. The stereotype is that we're really good at math and science, but just like literally every stereotype its not really true and doesn't apply to everyone. A couple years ago I was feeling kinda "stuck" I guess with where I was in my life and ended up googling jobs that were good for people with autism. And I kid you not, every single one of them was like some kind of scientist, or working with computers, or numbers. So like, literally everything that I am not good at. I love to draw, and write stories, and I know that other autistic people do as well, so I'd just really love to see that represented more. We can be creative too.

Anyways, sorry that was long, but really just anything that isn't a stereotype/ comparable to Sheldon Cooper.

Can y’all explain meltdowns for me? How different is it from what non autistics would consider a meltdown?

Okay, "meltdowns"? not a thing. That's what Karens and "autism mommies" call having a basic sensory overload or something along those lines when they don't want to deal with us. Trust me, my dad was biiig on the idea, he punished me all the time for it. And yes, he was dealing with mental illness at the time, but that was no reason for him to abuse me. Alright? Sorry, the term is just triggering to me, if I sounded harsh let me know and I'll clarify my meanings.

Nah you good fam.

Thanks to everyone for the information! This will remain open, but I think I know where to go now. :D