Quotes About Autism (Part 4)

I'm on a journey of learning-about-autism.  I've been reading and jotting down quotes that I find validating, interesting, infuriating, confusing, etc.  

I started with Lord Wiki and his links. But I've kind of now taken a long detour on a website called neuroclastic.com. Along with that, I have a daily regimen of watching a Yo Samdy Sam video.  I'm watching them in order.  Well, and I cut up the long live stream videos into multiple days. Today I finished watching her holiday special which took place December 2019. I'm wanting to yell: Spoiler alert!  I'm eager to see when Covid will first be mentioned in a video.

I love Sam's streaming videos...not just because of her.  I love the other participants.  They seem really good at interacting with each other and being supportive.  I love how they shower Sam with support and adoration but not to the point that they ignore each other and step over each other. Does that make any sense?

Anyway...onto the comments....

Note: If I have no comments about a quote, it's probably because I agree with it and don't have anything valuable to add.

1. From Yo Samdy Sam's video about autism and friendship:

 I was talking about having mom friends and things like that. It's great. But I would like to see them not necessarily more often all the time but at least more often to get a really deeper bond. And then know, are we really friends?  Can I text you funny GIFs? Are you going to get annoyed, because the phone is binging at you at six in the morning or something? I feel like I need to have close friends that I can be...that I can irritate.

I think that might be my ultimate idea of a true friend...someone I can simply text at random times because I suddenly want to share something.  It would also have to be that I know or sense that they appreciate what I'm sending. If it's something interesting to me, they'll be interested.  If it's something hilarious to me, they'll find it funny as well. If it's something amazingly weird to me, they'll find it weird too. If it's something scary, sad, or worrisome to me, they'll have empathy.

I am guessing it's rare for someone to have that one perfect friend that will fulfill all these things.

When I have something I want to share, I often have to struggle to think...who would be interested in this? And sometimes there's no one and I post it on Instagram or here, hoping that maybe someone there will end up caring.  Or....I just keep it to myself.  

I don't know if this is a very autistic thing...meaning it happens more to autistic people than neurotypical ones.  But I have a VERY hard time defining friendships.

In the past few years, I have often thought/said/felt that I don't have any friends outside of my family. But if someone else examined my life, they might have said I do have friends. And I think there might be people who saw me saying this and think, WTF. I thought we were friends?

But...I guess I feel if I can't text them or message them when I want or need to talk to someone, they're not really, technically my friend.  I'm not saying that if they do not reply immediately to my text, then they're not my friend.  What I mean is that A) we have easy access..for example, they're in my contacts, and I'm in theirs. B) We communicate often enough that if I send them a message or email, I'm not picturing them surprised to hear from me. C) the friendship has some amount of time behind it...It doesn't have to be years but enough time that it doesn't feel like a passing phase.  

I guess A, B, and C is how I'd define friendship. Then whether or not were are GOOD friends would be dependent on the things I mentioned about: support, matching senses of humor, shared interests, etc.  

Right now I think have two friends outside the immediate family that fits A, B, and C. One is a second (?) cousin and the other is my aunt. 

I also have very new people via an autism-friendship app that definitely fit a A, slightly fit B...but definitely don't fit C yet.

And then there's a lot of everyone else—People who are too special to me to label them acquaintances. But they also don't fit into my idea of what a friend is.

2. Also from the video above:

But that's why I have a channel. So I can say if you want to understand me, go to my YouTube channel. And you'll really, really understand me then. I actually do feel like members of my family have been watching, and they understand me more, because I'm probably just more open talking to a lens than talking to people in real life...it's very hard for me to open up. And it's extremely hard for me to be vulnerable, because I have so much anxiety about like did I do the wrong thing. Did I say the wrong thing?  How are they reacting?  Oh no. They gave me a funny look. Does that mean they hate me? Did that mean they just didn't understand what I was saying.  

I feel very much the same way in terms of my blog and past online journals. Initially, I think one of the main purposes of the blogging was to share my life and feelings with my family.  But after rare and/or very little spontaneous/voluntary interest from them...it's become much more about writing to strangers and my future self.  

In terms of feeling vulnerable, I can definitely relate. I think more often it's less about worrying that I've offended someone and more often about feeling invalidated. It's the worry that if I share something personal, they're going to minimize it, ignore it, give me the message that they think I'm ridiculous...look profoundly bored, etc.  

On top of all that, when it comes to spoken communication, I'm not good at it. It's very hard for me to explain things, tell stories, etc.  When there are a lot of other people fighting for a chance to talk and/or there is a lot of interrupting, it's especially hard for me.  For some stupid reason, I keep trying, though.  

3. From my own journal from 2005:

I probably had some kind of mild autism thing. I did weird things as a kid. I turned out fairly okay. Actually, I think I turned out wonderful. But I don't like to brag (little winky face there).  

This was at a time where I was pretty much against the aspergers and autism label.  I think my idea was that being autistic in itself wasn't a problem. But the label inferred something negative and therefore the label itself was the problem.  

I would still agree with my past self in settings where autism is seen as a disease needing a cure. But in settings where autism is more of an identity or neurotype, I support the label.    

4. Still on the video, but this isn't from Sam herself. This is a comment on the livestream from someone named Skeindeer Knits. They say, Unusual opinion maybe: but I kinda like my mask. I feel like I have found a way to put my social-pants on while still being me. Would still like to be liked when I "let go" though. 

I sort of like my mask too. If it is a mask....I'm really not sure.

It's so complicated. When I was young, I was super shy and awkward. For the past twenty-five years or so, I have been so pleased with myself for overcoming that.  Sometimes I'll look at people that I'm outgoing with, who knew me as a child, and I feel so relieved and pleased with myself that I'm not that awkward, quiet girl they used to know.  

But now, it's like I don't know who is the real me....or who is MORE the real me. 

Also. When I try to distance myself from that quiet, awkward girl, is it like I'm totally dissing an autistic kid?

Back then, I felt my true self was trapped behind a cage of shyness. But now I often feel that my true self is hidden under this bubbly personality.  What's especially frustrating is that I think the bubbly personality is actually too bubbly for certain people...like I think they would like me more if I toned it down.  OR...maybe it's not.  Maybe actually it's too bubbly for me.  Yeah. I think that's it. As much as I didn't like the quiet me, I also don't really like the bubbly me.  

Added to all that complication...there are certain people who still bring out the shy, awkward me.

Shit. I thought I related to the comment from Skeindeer Knits. But everything I've written here pretty much contradicts that. 

Thinking about how I'd like people to see me...What I'd probably want is for people to think,  Dina is really weird or Dina is quirky or Dina is autistic. And she's pretty nice....and interesting and funny.  What I would like less is for people to think, Dina...she's SO quiet. But she seems sweet, I guess.  OR...Dina. I don't know her well. But she's very friendly!

Well, even worse than the last is probably people who THINK they know me very well...not because they've read my blog or listened to me in some other way but because they project their own selves onto me, or they have shaped me into some imagined person they want me to be.  

5. From: Butterfly in a Blender by shannonlyonsfrood:

I am not a broken neurotypical. I am autistic.

What's strange is I saw this quote on Instagram....probably less than an hour ago. I wonder if the account I saw was owned by the same person who wrote the essay. 

Either way...I think it's a good example of synchronicity.  

And I also like the quote.

6. From the same as above:

The last year was spent reformatting my life around the new information. It was like the manufacturing company finally sent me the manual for my model.

I think this is how I'm feeling lately. 

BUT it's with the underlying worry...What if this is NOT my manual?  What if I really am just a broken neurotypical?

7. From the same as above.

The “toos” are creations of society and entirely built of fads or subjective and personal boundaries. They imply the person who is the subject of the “too” is objectively wrong to be the way they are. Too loud, too excitable, too much in her head, too much overthinking, too many hours spent daydreaming, too stubborn, too lazy, too too too too too.

Oh Lord. I love that so much.

8. From Brief Musings on Autism Awareness vs. Acceptance by Cherry Blossom Tree

Awareness is a very passive activity. you can be aware of someone’s unique needs but not actively do anything about it to help accommodate them; on the other hand, acceptance is a game-changer.

Acceptance asks, what can I do to make this environment more accessible for you? What can I change to make this experience less triggering or stressful?

9. From Coming Out to Family and Friends as Autistic by Jude Clee

One of the (many) drawbacks of Autism Speaks and mommy bloggers hijacking the autism discourse is that autism is seen as a childhood disorder. The narrative is child-focused: their parents’ struggles raising them, their experiences in school, etc. Autistic adults are pretty much unicorns; as far as the general public’s concerned, we don’t exist.

 10. From: An Open Letter to the NYT: Acknowledge the Controversy Surrounding ABA by Faye Fahrenheit 

Autistic kids undergoing ABA therapy frequently report hiding their favorite toys, hobbies, or interests from parents, teachers, and therapists. In ABA, all potential reinforcers are to be used during therapy. Parents are told not to give the child access to these items or activities outside ABA.

I don't know how widespread this is among ABA programs. But it sure gives me another reason to be glad I wasn't diagnosed.

11. Also from the above:

One time I looked at my roommate and my mouth said, “You’re a centrist…” for no reason. Apparently my brain and mouth have different opinions about my roommate’s politics! Another time my mouth said, “I love you,” to a total stranger.

I started to say I love you to our waiter last week.  I think that was just a matter of having too much going on in my head.

I hear a lot about autistic people not liking grocery stores. I'm fine with them. I think my thing is restaurants. There's too much going on.  First of all, sitting across from someone and having a long face to face conversation is just too intense for me.  If there's a lot of people, it's a battle for me to participate.

I eat too fast and struggle to not do that...or I forget to try not to do that. Then I'm sitting there with most of my food close to being gone while the other person still has almost a whole plate of food left.  I then try to slow down, but it's really a lost cause at that point.  

The interruptions from the waitstaff distract me. I'm trying to be polite while trying to keep track of the conversation we were having at the table.  

So yeah. All that led me to start saying I love you as the waiter walked away.

I'm intrigued by the you're-a-centrist thing.  Random phrases pop out of my mouth. Fortunately, I don't remember it ever happening in front of other people.  

But like today...in the middle of nowhere I suddenly said, Cherry Coke. I have NO idea why I said that or why random things suddenly pop out of my mouth.  

In the essay, Faye Fahrenheit connects it to apraxia. But she lists symptoms of apraxia and saying random words is not on that list.

I'm confused.  

And now....looking at symptoms on an apraxia website They too say nothing about words randomly popping out of your mouth.  

Wait. I actually have an idea. You know how some people have absorbed twins. What if some of us have absorbed...or undeveloped personalities.  It's like we ALMOST have dissociative identity disorder. The personalities are there as potentials, but they never are actually born.  But once in awhile, they speak up.

Another idea is it's the same mechanism that causes really random things in our dreams.  Maybe the same mechanism that made me dream about a baby turtle last night also made me say Cherry Coke during the day.

It could be I'm crossing wires with a Dina in an alternate universe.

Or....

I'm possessed by a benign spirit. Or...I could evil spirits could have an interest in Cherry Coke as well.    

12. Also from the above:

Years of being trained to obey adults who made me uncomfortable, years of forced eye contact that caused me suffering, forced hugs, forced closed mouth kisses, sit up, sit down, sit up, sit down, sit up, sit down… These therapists had unintentionally taught me that adults should be able to do whatever they want to my body, and I was never allowed to refuse the therapist’s requests; after all, I’m supposed to be compliant in therapy.

And the writer ended up being sexually abused. Not directly by the therapists. No.  But the therapist pretty much helped to groom her so someone else could later abuse her.  

Even outside of ABA therapy, adults are quite good at unintentionally grooming kids for sexual abuse.  Forcing kids to hug and kiss people they don't like, continuing to tickle kids when they beg for it to stop....

13.  From 5 Observations on My Late Diagnosis by Emmanuel 

The ideal outcome I wanted with my family and my diagnosis had its throat cut by the harsh reality. I’m still misunderstood. I’m still reluctant to talk to my family about my autism. Nothing changed. The only family that gives me any support are the ones who always have.

I don't think telling people I'm autistic is going to make them treat me any better. They're probably going to do one of three things.

A) Not give any credence to my self-diagnosis. But also...if I get a formal, professional diagnosis, they will doubt that too.

B) Believe the diagnosis and see it as sad...something I need to overcome. Instead of thinking, Oh cool! Now it makes sense. That's why you're so weird!, it will be Oh. Okay. That's why you're so messed up and creepy. I feel sorry for you, and I'm going to show my support by raising money for Autism Speaks.

 

C) Believe the diagnosis, but it won't make a big difference.  They've already accepted certain aspects of me whether it was labeled as autism or not.  As for parts of me, they are less tolerant about, will it make them more tolerant if I explain it's probably due to my being autistic. Maybe?  I can imagine it happening if they're in a really good mood. If they're not in that mood, I picture them giving me that look that says, Oh God. You are so ridiculous. 

It could also go in the other direction where things they accepted in the past are now seen as something they need to help me or encourage me to overcome.

The other day I started ranking the different ways people can respond to diagnosis and/or identity related information.

The top tier would be doing their own research.  You tell them about a diagnosis or a new label you've given yourself, and they start Googling.

In Tier B, they don't do their own research, but they read/watch the links that you send to them.

In Tier C, they don't research or follow any of your links. But they do listen to you when you talk about it, ask a few questions, and show some interest.

In Tier D, they change the subject whenever you bring up the label or diagnosis.  If there is a group discussion about it, they will avoid participating.  

I guess there can also be combination of tiers...like A-D.  This could be where the person HAS done a ton of research but has the opposite viewpoint of you regarding your label or diagnosis.  For example, when you tell them you're gay, they read about how to convert someone to being straight.  Or you tell them the very sad news of your toddler being diagnosed with autism, and they read about the wonderful autistic community and neurodiversity.  

That's about it for now.....

I need a photo for this post so my blog will look pretty.

So here's a picture from my current Minecraft World.

It looks like a small house, but it's actually the entrance to a large underground home, and I've started to build a tunnel system.   

My last world was all about building tiny houses, weeding, creating gardens and pools, and collecting artifacts from various biomes to decorate my huge property.  

This world is about keeping most of the above ground wild/natural natural while building safe tunnels underneath.  

 

Read my novel: The Dead are Online