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....


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.  

 


What would our world be like if we
knew for sure there 
was life after death, and 
we could easily talk to our 
dearly-departed on the Internet?

The Dead are Online a novel by Dina Roberts 




Quotes about Autism (part 3)

I'm on a journey of learning-about-autism.

Below are quotes about autism. Some validate what I'm thinking. Some open my mind to new things. Some annoy me. Some make me angry.  

(For a better idea of what the hell I'm doing here and why, Part 1 will explain things) 

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 The Double Standard of Growing Up Autistic by Chasing the Whale

Not only that, but acceptability politics (making things seem more acceptable to appeal to the mainstream) is harmful on its own, because if you’re a verbal cis-het genius with a “splinter skill” profitable to capitalism, who lives on their own and requires little or no obvious support except for being a bit disorganized, ableists see you as “one of the good ones,” as a pseudo-autistic that they’re not even thinking about when they discuss wiping us off the planet by means of selective abortion.

I had this type of ableism in the past...even on my blog.  It's the idea that there's SAD, TRAGIC autism and cool, very okay autism.  

And I'm not fully de-able-ised. I still imagine there are some autistic people who have such strong autistic traits that it causes them to suffer too much.  How much suffering is too much? It's really hard to qualify or quantify.

I guess what I'd ask if the suffering is caused from autism, or is it caused by society's prejudices.  If someone can't speak because of their autism...what if they lived a life where everyone was cool with that, and they could easily get by with writing instead?

I think what we need to ask when we start to feel sorry for a person is whether we'd still need to have sympathy for them if they lived in a society where those certain traits were celebrated.

I just finished reading the essay, there's too much I want to quote.  So I'll just say I highly recommend reading it.  Of course, I recommend all the essays and articles I'm linking too, but I especially love this one.

I like it especially, because it relates very well to the personal stuff I started writing yesterday and then deleted it. What I was basically wondering is whether having an autism diagnosis as a child would have made my parents, sisters, teachers, etc. pathologize aspects of me they've almost always accepted.  

Minus some major pushback I got with the Australia obsession, most of my family had been extremely supportive of my special interests.  But if I had gotten a diagnosis back in the 1980's, when the idea of autistic pride and acceptance was much quieter than it is today, would they have seen special interests as symptoms of a dreadful mental disorder.   

The reason I deleted it is I didn't know if I was being outlandish with the idea...but the person who wrote the essay WAS diagnosed young, and he talks about how innocent and awesome things can become pathologized.  So.....

2. From: So, You Want to Autism Level Up by Autism Level Up:

Regarding people who are are showcased as heroes for doing something like sitting next to an autistic person in the cafeteria.

First of all, these stories perpetuate the idea that treating autistic people with respect and decency is newsworthy and deserving of some sort of superhero status. That’s not good. Second of all, it does nothing to empower autistic people who are often portrayed in these stories as some poor, helpless, but very sweet soul reliant on the selflessness of the kindhearted few to allow them into your normie nonsense (like prom… just for example). 

What really makes me want to scream is people who are shitty to the autistic people in their daily life but will be nice to an autistic stranger or acquaintance if it's something they can post about on social media or put on their college application.  

It's like: Ewwww, why do you flap your arms? That looks creepy. Why are you so obsessed with things?  Why do you dress like that?  You're such a picky eater! It's annoying.

Same person: Here's a photo of me helping some kids with autism bake cookies!

3. From: On Autistic Masking and Unmasking 

They have lists of phrases that encourage autistic masking.

 "Why do you always have to be so sensitive?" "Stop making such a fuss over nothing." "Control yourself." "Take a joke." "Stop moving." "You need thicker skin." "It's not that loud." "Calm down." "Try to fit in." "Look me in the eye." "Overdramatic." "Sit still." "Man up." "Relax." "You're no fun." "Quiet hands." "You're so quiet." "Chin up." "Grow a pair." "Stop talking so much." "Nobody will hire you." "Stop overthinking." "Use your words." "You won't last a second in the real world." "You can't do that in public." "Use your manners." "Ridiculous." "Tattletale." "Drama queen." "People will think you're crazy." "If you loved me, you would..."

The ones I bolded are things I've heard at least once (or in some variation).

4. From: My Dream as an Autistic Youth: An Autistic Renaissance by jtaylor1718:

But inferiority is instilled in autistic people both subconsciously and consciously by popular culture, both as a result of the negative stereotypes about and attitudes towards autistic people and the implicit ableism in labeling autism as a disorder.

5. Also from the above: 

I predict that there will be an Autistic Renaissance. Openly autistic people will rise to political positions, careers as mainstream artists, and other positions of leadership.

I can totally see this happening, and as jtaylor1718 describes in his essay, it's seems to have already started.

6. From: How to Get Your Workforce Excited about Diversity and Inclusion by Terra Vance

In regards to employees having negative opinions regarding a coworker when they have nontypical behavior and/or needs. 

Normally, the employer and human resources (HR) are at an impasse because they can’t disclose private medical information to explain that an employee with invisible disability has been misunderstood; however, if the employer makes it clear that the company recruits, hires, and promotes neurodivergent and other employees with disabilities, then employees are much more receptive to behavior that deviates from the norm. 

That sounds like a pretty good plan. And hopefully in cases where companies work to make people comfortable, the autistic people can happily come out of the neurodivergent closet.  

7.  From: Newly Diagnosed ASD Shame: I'm not really autistic, right? by Andi Barclay 

Another reason I grapple with whether my autistic label is deserved is because the standards for autism inclusion are expanding.

Over time, ASD diagnosis rates have been on the rise in parallel with changing medical standards influencing who gets diagnosed.

At what point in the evolution of diagnostic criteria has autism most accurately been captured?  

From what I've been learning, there's a lot of imposter syndrome with autism...especially with people self-diagnosed.

Of course, I go through it pretty much on a daily basis.  Throughout an average day I range from, I'm so definitely autistic to I'm probably autistic to I seem to be...maybe autistic. Kind of?

The thing I tend to tell myself is that autism is a human construct. There's no blood test out there to prove autism in anybody.  Some people noticed certain traits and gave it a label.  And autism was born.

But if the traits become so broad and so changed from the original....it does make one start to ponder.  

On Instagram, there was a question put to autistic people. What is something that people would be surprised about you?

And people named things that didn't fit into autistic stereotypes and/or autistic symptoms/traits. Examples included: I don't like math and science, I'm social and love parties, I don't have special interests.

I answered that I love grocery stores. Because I've heard multiple times that autistic people don't like grocery stores. And also, some grocery stores actually have special quiet hours for autistic people.  It's that big of a thing in autism.  

I think it's comforting to see these lists when you have imposter syndrome, because it's a reminder that you don't have to fit perfectly into a stereotype or have every single autistic trait to be authentically autistic.

BUT....What if you have someone who doesn't like math and science AND loves parties plus crowded, loud concerts, AND doesn't have special interests AND loves grocery stores AND doesn't struggle with communication.  And they don't do a lot of stimming.

 Let's say they hate olives and anything with tomato sauce. That's their sensory issue.  And also they are rigid about their routine...sometimes.  Is it okay for them to consider themselves autistic? And if they do, does society need to agree with them?  Should the autistic community accept and welcome them?

I think there might not be harm in being overly inclusive if all the person wants is to be invited into a community that they can relate to in a few ways. Or it might be that all their friends are autistic, and they don't want to be left out.

I think one problem might be when and if these people start answering questions aimed at autistics, and start overly shaping future autistic profiles.  

Let's say many of these people say they don't have special interests. Then in the future we're told, Actually special interests are just a stereotype of autism. Most autistic people do not have any special interests.

Maybe by then, the word autism will mean something totally different, and people similar to me will have another label.    

Another problem would obviously be someone trying to get special accommodations.  Though it depends on what's the accommodation.  If the example-person I mentioned above requested pasta sans tomato sauce as their special accommodations, I'd be 100% in support of them getting what they need.    

As for me....the only new accommodations I'm really expecting as a newly self-diagnosed autistic person is accommodations FROM myself-to myself.

I'm doing a lot of:  It's okay to feel what you're feeling.  It's okay to ask for help. It's okay to accept help when it's offered. It's okay to say no.  It's okay to have needs and wants that are different from other people. It's okay to be weird. 

I wish I could get all that tattooed on my hand or something.  









You might be wondering why I added this picture here. What does it have to do with autism?

I don't know.

Well, I think autistic people tend to like Minecraft. At this point, that symptom is not in the DSM. But eventually...it probably will be. I hope.

That's besides the point. The main reason I put the photo there is I changed my Blog style/layout, and I think it looks better with photos in the post. So I might have to add random photos to my posts. 

This photo is not completely random, though. It's also a way to bring up this issue.  I've gotten back into playing Minecraft (again) and therefore....it might take some extra time for me to get to the next installment of my Autism Quotes series.

Note: That photo is actually from my last tango with Minecraft. I haven't taken screenshots of my new world yet.  

 

 

 

How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?   

The Dead are Online, a novel by Dina Roberts 

Quotes about Autism (Part 2)

I'm on a journey of learning-about-autism.

Below are quotes about autism. Some validate what I'm thinking. Some open my mind to new things. Some annoy me. Some make me angry.  

For a better idea of what the hell I'm doing here and why Part 1 will explain things) 

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: If You Can Use Social Media You are High Functioning or Have Mild Autism by David Gray-Hammond :

But functioning labels are a myth. They harm the person being deemed “high functioning” or “mild” by neglecting to acknowledge their struggles. They harm the person being deemed “low functioning” or “severe” by neglecting to acknowledge their ability and humanity.

I think when people talk about functioning, what they're probably really talking about is how obvious is our autism. Are we so visually autistic that people can tell as soon as they see us?  

Does someone need to have a conversation with us and then they know?  

Would it take several get-togethers for our autism to be revealed?  

Would someone have to know us for years?

Might our autism be so hidden that even those closest to us don't see it?

 I think often people care more about how we're behaving than how we're feeling. It's more about what we show than it is about what we hide.

Though I think what I'm talking about here is less about professional diagnosis and more labels given by friends, family, classmates, neighbors, coworkers, strangers we run into, etc.  

2. From: The Crossroads of Being Autistic and Queer by Autistic Science Person:

Of course the assumptions come in first, like “You must be very high-functioning!” (trying to give me a compliment), and “Well, you don’t look autistic!” (also trying to give me a compliment). 

I can very much relate to this. I've gotten the high-functioning comment...meant as a compliment or to be reassuring. I didn't take much offense, because I was feeling so relieved, so validated that the person seemed to agree with my self-diagnosis in the first place. I really expected to get more resistance from them. 

3. From: 5 Million Grant Awarded to Make Autistics Mask in Job Interviews by Autistic Science Person:

The reason we can’t do well on interviews isn’t because we aren’t trying hard enough to pretend to be neurotypical. It’s because the interview process itself is stacked against us, almost as if to weed us out by default.

What else are interviews for except to make sure that we're neurotypical enough?  That we're not too awkward or too shy.  That we won't make our coworkers, or the customers, uncomfortable by being too weird.

I think there are some jobs that, by nature, are better suited for neurotypical people. And for those jobs, it makes sense to have face to face interviews.  But for other jobs, I think other things could be tried such as portfolios, observations, written interviews, etc.  

4. From the same: 

Many neurotypical people refuse to assess their own sensory system, and how maybe they could get used to a quieter, slightly dimmer environment for once. Maybe they can change. Maybe they can, just once, consider how exhausting it is to be told, over and over again, that you are the problem.

I think it would be great to write a story in which autism becomes what's typical, and the not-autistic children are put into therapy to change them into acting more autistic.  

5. From: Toxic Positivity, Gaslighting, and Tone Policing Autistic People by Aprenderaquereme:

In therapy and education, so many times children are told to “use your words,” which has a problematic background. The message that sends is, “Adults won’t listen to you if you show your most overwhelming emotions.” This is even more problematic for autistic people, as we do not always have access to spoken language, we have no choice but to give up in our difficult moment.

In my time as a preschool teacher, mother of a small child, and aunt, I am guessing I have said, Use your words. 

The underlying meaning is to communicate with our voices instead of our fists, feet, a sharp object, etc.

I can now see why it could be problematic. 

I don't think it's definitely a problem for children who can speak well...or who can use sign language or write.

I think it definitely is a problem if what the adult is really saying is, use your words and make sure the words show obedience, reverence, and an attitude of positivity.  This is hard to do when you're scared, angry, overwhelmed, feel threatened, etc.  

6. From: Sixteen Year Old Killed by Restraint. It's Time for Comfort Over Control by C.L Lynch:

Perhaps the most aggravating and frustrating aspect of these horrific deaths is the fact that they so often occur at specialized facilities which boast of being specially equipped to handle students with behavioral difficulties.

Often using terms like “positive behavioral support” or “behavioral health,” these schools claim to have highly-trained staff who are skilled in serving students with behavioral difficulties. They list restraint as a method of “last resort” to protect the safety of other staff and students.

And yet, every time this occurs, the description of the incident never remotely seems to justify the level of force being used. A 13-year-old spitting does not appear to be a “last resort” type of incident. Nor does an autistic teen who wants to keep playing basketball. Or a hyperactive seven-year-old unable to hold herself still. 

7. Also from the above: 

For example, Vancouver-based Dr. Vanessa Lapoint, a child psychologist and author of Discipline Without Damage, has advised against using reward systems in helping children manage their behaviour. Increasing the consequences of behaviour that they might not be able to control can result in the loss of hoped-for rewards, which is, in itself, punishing. 

Wow. I never saw it put that way. But it makes a lot of sense.

I can relate to this as a parent. 

Once someone has the hope of having something, denying them what they had hoped for is probably just as painful as taking something away that they already had.  

In the best situation involving rewards, the child behaves the way the adult wanted them to behave. The child gets the reward.

If the child doesn't behave, the hope is that the adults will have the strength to withhold the reward. The child is disappointed and a little sad but learns their lesson and plans to try harder to achieve the award in the future.

The reality is often that the child is absolutely devastated. They cry. They scream. They may become violent or destructive. If the adult has a normal or above-normal amount of empathy, the whole process is likely to crumble.  

Some adults have the personality that's needed to pull off the whole reward and punishment thing.  They are good at standing their ground, making good on their threats, and withholding unachieved rewards.  

Other adults (like me) are really bad at it. We have the skills needed to offer the possibility of a reward or make threats of a punishment. But we fuck it up when it comes to the whole execution step.  

I have my doubts, though, that being good at it makes someone a better parent, teacher, grandparent, caretaker, etc.  I also doubt that it extinguishes the undesired behaviors.  Short-term? Maybe. Longterm with negative mental health consequences?  Also a maybe.  

Being bad at it, though, is also not going to lead to positive outcomes.

All in all, it's probably best to avoid reward and punishment discipline as much as possible. OR at least save it for situations where it seems likely the child will succeed. 

8. Also from the above:

and that means you need flexible role models who understand the child’s abilities and focus on soothing the emotions, not controlling the behaviors. They insist that you need to build emotional intelligence and emotional management skills… not reward and punish outward behaviours over which the child often has no control.

Yeah. That's a good idea.

9. From Yo Samdy Sam's video on Autism Comorbidities:  

About depression and anxiety, she says:

I've had periods of my life where I've been really depressed, and I've had periods of my life where I've been extremely anxious; acutely anxious. You know the sort of fear.  But all through my life, there's been a low-lying anxiety and depression, which I don't know if it's enough to count as an anxiety disorder.....

But I also do think in some ways that it is a natural response and a rational response to living in a world that is not made for us and is actively hostile to our needs.

And I don't know whether that is a controversial opinion or not. I think it's rational to be depressed sometimes. If you watch the news, and you see things; see the state of the world, it can make you feel very powerless and depressed. 

This is very much in line with my way of thinking about depression and anxiety. And from my experience, it is VERY controversial.  

I think the medical model of depression and anxiety is very dominant in our society, and you can get a lot of hate and anger if you veer off that course.  

10. From: Culture and Politics or Why a Neurodiversity Paradigm is Left of Center by Michelle Sara:

Finally, stop forcing your personal value of independence on them; the ability to live independently is not a universally-held value, and I’m tired of people trying to justify their eugenics-like opinions about autism by implying that a life without independence isn’t worth living. Many disabled people who will never have independence have written on this topic.

This emphasis on independence is a conservative value, whether we acknowledge it or not. The idea is that if you can’t be responsible for yourself, then someone else has to be responsible for you; you’re a burden on society rather than a working cog in the machine.

11. From: On Autism and Intelligence Language and Advocacy by Terra Vance.

About the word "Disability", Vance writes:

In disability circles, it simply means that a person has a need and a right to accommodations because the world is not designed for them. It means that they require support or reasonable adjustments to environments, not that they are useless, incapable of achieving, or less human.

12. Also from the above in regards to the idea of functioning labels in autism.

With autism especially, the degree to how well someone functions is largely depending on the social context where an autistic person exists. If a workplace fails to make sensory accommodations, the most skilled and talented employee in the workforce may be completely unable to work there at all.

I just want to say that I've wasted about two hours writing personal stuff about my own experiences; than deleting it.

I don't know.....

I'm just wanting to share my pain and frustration. No, not about autistic.  I mean about all this writing and deleting.  


Actually....I think I'm going to stop this post here and stop doing these posts.

I thought it was a good idea, and I'm kind of glad I tried it.  But I feel it's causing me more stress than...well, anything very positive.

First of all, I find myself reading in pursuit of cutting, pasting, and responding. And in a way, I think right now I need to do more reading, understanding, and...privately reflecting on my own experiences.  

I think a lot of my blog is thinking aloud and confessing.  I'm not sure if this is the right thing for me to do at the moment.  

The other thing is, I worry that these posts are difficult and not-pleasurable to read.  Is it too disjointed with me jumping from quote to quote?  

I'm not sure if the quotes I'm sharing are as powerful, as they feel to me, when taken out of context.  


Shit....

Well, now I've read over my post so I could hurry up and post it.  I kind of like what I wrote.  Well, duh. Of course, I like it.  Otherwise, I'd just delete this instead of reading it over/proofreading.

I still feel it's probably too disjointed for most people to enjoy or learn from. But there might be a few people who find value in it.

If anything...future me will appreciate it.  Probably when I'm like 70, I'll really love looking back and reading this.

I think what I need to do, though, is slow down.  I was going slow at first...taking my time.  With the last post, I did well with that.  Now I've kind of gone downhill.  Reading too fast...almost skimming sometimes to find quotes I'd like to put in my blog post.  

With writings that I ended up quoting from, I did read more slowly and carefully.  But there are essays and articles that I skimmed through with the attitude of, Nah, I don't think I'm going to want to share anything from this. Skip!

I don't want to do that.

Anyway, with all my rambling...this is already long.  So I think I will end THIS post here. And I will maybe start a third post. Hopefully it won't be finished for several weeks because I'm taking my time——  not rushing, not skimming, not pouring my heart out; then deleting.......



How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?   

The Dead are Online, a novel by Dina Roberts 

Quotes about Autism

This blog is almost thirteen years old.

It started out as a blog about Australia, because I was obsessed (or passionate) about Australia.  One of the main storylines of my life is being obsessed with things.  

Now I've come to believe that I'm autistic and part of being autistic is having "special interests"  Special Interest is another name for obsessions and/or passions.  

I find it funny and maybe ironic that my special interest is now autism. It's like I'm now obsessed with what causes me to get obsessed with things in the first place.  

When my special interest was Australia I dedicated a lot of time and effort to learning about Australia. Now I'm dedicating a lot of time learning about autism.

I'm doing something new which I kind of wished I did with previous special interests.  I consulted Lord Wiki about the autism rights movement.  Consulting Lord Wiki is definitely not new to me. But after reading what he had to say, I went to the bottom of his spiel and started clicking on all the sources and reading from those AND...then sometimes going through rabbit holes that those sources provide. It's a good way to get a variety of insights. 

I've decided to copy down some of the quotes that I find interesting, inspiring, thought provoking, relatable, comforting, and....

Should I maybe also include ones that I don't agree with or find offensive? 

I think maybe I will.  

Perhaps I might also include ones that I struggle with—ones that make me feel uncomfortable, because it goes against what I've usually tended to feel, or I think it's too much of a contradiction.  

Note: If I say nothing in response to a quote, it means I strongly agree and am just happy that someone has expressed what I'm feeling or thinking.  And/or I feel they've made a really great point, and I have nothing to add to it, really.  

Anyway....Here's the first quote. 

1. It's from Michelle Dawson in a paper entitled "The Misbehavior of Behaviorists"  She says:

Societies and scientists have historically made serious errors in determining which kinds of people are acceptable and which behaviours should aggressively be treated. People with differences have been ostracized then forced into mandatory treatments for their own good: left-handed people, and homosexuals, and many others. Societal and scientific assumptions about what constitutes freedom and integrity for disabled people have often been wrong. There exists no reason to believe that our society and its scientists are uniquely immune to these defects. 

I didn't understand the last sentence at first. But now I get it. It's that if we're able to understand that scientists and society in the past got it wrong about things like homosexuality and left-handedness, we should also understand that scientists today may be wrong about certain things.

2. The following quote is not from Lord Wiki's list of resources but instead from my favorite autistic video channel Yo Samdy Sam.  

In a video about telling your family you're autistic, Sam answers the rude question: Doesn't it scare you the idea of having a kid who has a high probability of being autistic.  Her answer is kind of long, and transcribing is a pain. So I'm just going to write out parts of it.  If you want to hear all of what she says, I highly recommend the video. 

She says: 

I never really understood how some people mourn the child that they thought they were going to get.  Because there's always a chance there could be issues with your child in a variety of ways.  And you know this whole parents who get told their child is autistic and they're being coached through the stages of grief.  Like that's not incredibly insulting to autistic people. Your child hasn't died. Your child is still there. Moreover, your child is still the same person that they've always been 

So really. I guess what people are doing in that situation is completely projecting who they want their child to be onto their child and not seeing who is right in front of them. All they've lost by having an autism diagnosis is the fantasies about who their child is going to be.  And even without autism, you're never really sure that your child is going to grow up to do things like go to university, get married, or all these things.  There's never any certainty in life about that sort of thing. And plus having an autism diagnosis doesn't necessarily stop that....I think there is definitely a culture of fear, probably more so in the US but probably creeping into Europe. A culture of fear about autism because disability is seen as a bad word and autism is a disability.  The problem is society not your hypothetical autistic child.  

She goes onto say that, I'm afraid of having a difficult child. Is that the same thing? I think it would be very hard for me to have an autistic child that has a lot of very loud vocal stims. If I had a child who was neurodiverse in the way that was sort of the opposite of my needs, that would be difficult. 

I think the thing is, there are challenging/difficult autistic kids and there are also challenging/difficult neurotypical ones. There are easy autistic kids and easy neurotypical ones. And whether kids are easy or difficult is sometimes partly dependent on who the parents are and the needs and personality of those parents. 

3. From an editorial entitled "In Support of Michelle Dawson and her Work".  It's listed as being written by the people at autistics.org:

They say: As for blaming autistic people's difference for the cruelty we receive, that removes the accountability of the people who are being cruel to autistic people. It makes it sound as if autism is to blame for the harm done to autistic people by others, which makes no more sense than saying accent and skin color are to blame for racism. When a person is being discriminated against for a quality, it's not that quality that needs changing. Being bullied on the schoolyard is not the fault of the autistic person for "looking like an easy target", and being socially ostracized is not the fault of the social aspects or "quirks" of autism.

Too many times I've heard a person say that a child needs to change just for the fact that they're at risk of being bullied.  The world would be much better, probably, if instead we worked to change the bullies.   

4. From Jim Sinclair's essay : "Please Don't Mourn For Us": 

Autism isn't something a person has, or a "shell" that has a person trapped inside. There is no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person -- and if it were possible, the person you would have left would not be the same person you started with.

I think his essay is pretty famous among the autistic community. I've seen it referenced multiple times. This is my first time reading it.

5. From the same essay as above: Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

6. From: a Wired article "The Truth about Autism: Scientists Reconsider What They Think They Know":

Mottron draws a parallel with homosexuality. Until 1974, psychiatry's bible, the Diagnostic and Statistical Manual of Mental Disorders, described being gay as a mental illness. Someday, Mottron says, we'll look back on today's ideas about autism with the same sense of shame that we now feel when talking about psychology's pre-1974 views on sexuality. "We want to break the idea that autism should definitely be suppressed," he says.

7. From an essay entitled Autism is Not a Shell Surrounding a "Normal" Child by Maxfield Sparrow:

 Autism is in your child’s DNA, brain, sensory organs. It is characterized as pervasive, because it is in every cell of your child’s body.  Autism is so much a part of who your child is that many of us Autistic adults who are able to communicate, and who choose to talk about being Autistic, will tell you that it hurts us to hear or read phrases like “fight autism,” because it feels like people want to fight us.

8. Also from the above:

I also marvel at the terms used: When your child who is not autistic takes horseback riding lessons, they are taking horseback riding lessons. When your Autistic child takes horseback riding lessons, it’s animal-assisted therapy. (That said, if your insurance will pay for your child to have surfing lessons that your child is really enjoying, but only so long as you call it therapy? Call it therapy and let your kid go surfing.)

That's pretty funny. If I do decide to get an official diagnosis of autism, I might declare that everything I want to do is therapy.  

Actually....maybe I already do that....sometimes.  Well, at least to myself.

But...the truth is, the big thing I'm kind of wanting right now IS to go to a therapist and get a diagnosis.  So it would be kind of strange to pull the therapy-card in that regards.  

I'm not sure I'm making any sense here (to other people besides myself)

9. From an article entitled "Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum":

Altogether, studies reveal that students or individuals with less severe autism may more frequently suffer from bullying, perhaps because peers interpret their behavior as indicating oddness rather than disability and thus as more intentional or irresponsible.

This reminds me of a meme I've seen. I'm trying to find it.....

Well, I can't find it.  But it's along the lines of, you say you would never bully a person with autism, yet you tease someone for being a picky eater, and.... there were other examples. The picky eater stuck out to me, probably because I was/am a picky eater.  

10. From a blog post entitled I resign my roles at Autism Speaks written by John Elder Robison who was one of the few autistic people working on Autism Speak's advisory boards: 

We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support.  There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful.  We have delivered very little value to autistic people, for the many millions raised.

11. From the same:

Autism Speaks says it’s the advocacy group for people with autism and their families.  It’s not, despite having had many chances to become that voice.  Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.

12. From a Guardian article entitled : "Mentally disabled actors are victims of modern 'blacking-up', says campaigner":

An autistic actress says:

It is not just mentally disabled actors who lose out when non-disabled people are employed to act them. Audiences think they are getting an authentic portrayal of a mentally disabled person, but they're not. It's not like putting on a different accent or learning what it was like to be raised in a different era. You can't understand what it is like to have a mental disability unless you've really lived with it. When non-disabled people try to portray us, they tend to fall back on stereotypes that have done our community so much harm in the past.

I disagree with all of this.  First of all, with all these undiagnosed autistic folks out there, for all we know the "neurotypical" people playing the autistic characters might actually be autistic.

Even if that's not the case, I think part of being an actor is having the skills to feel and act like you're someone else.  I trust that a good neurotypical actor can manage to accurately portray an autistic person. Though it would need to be about research and understanding what's going on under the surface...NOT just observing and imitating.  

As for falling back on stereotypes, there'd I put more of the blame on the writers, producers, and directors.  

All that being said, I do think disabled roles should be played by disabled actors just for the fact that the disabled actors are being deprived acting jobs. It's not fair for neurotypical actors to get all or most of the work.  So I'd say for every Freddie Highmore out there playing an autistic person, I hope there's an autistic actor playing the role of a neurotypical person.  (But I'd also say maybe Freddie Highmore IS autistic) 

I'm guessing there are probably many undiagnosed autistic people working successfully as actors.  So it's probably less important for them not to be robbed of roles than it is for someone with a disability that would make it hard for them to play a non-disabled character.  

The next several quotes are from a website Lord Wiki led me to called Neuroclastic 

13. From: "Autistic People React to the Autism Spectrum Quotient (AQ) Part 3" by Sebastianthedude 

In regards to the question on the diagnosis test: "People often tell me that I keep going on and on about the same thing":

But, not everyone minds me talking on and on about things, so they don’t bring it up. This is true of most friends. Also, I know to mostly ask questions about the person and listen when I meet someone new and don’t talk on and on about my interests because I know most don’t want to hear about it.

I find it really annoying when psychological or medical tests ask if other people notice things about you. The questions imply two things. A) that you can't be trusted to know your own self B) that people in your life notice certain things and are open about it. OR that they're not overly critical.  

What if you're not autistic? What if you don't have a special interest?  What if you just have a very intolerant and self-centered friend who complains about you going on and on about something as soon as the subject bores them or as soon as the conversation veers away from what interests them?

Or what if you are very autistic and have special interests, but you're life is not full of intolerant assholes who often complain about you talking about what most interests you?

I think both neurotypical and autistic people have variability in the level of self-centeredness in their conversational skills.  I think it's less about what people talk about and more about whether they hog the conversation.  

14. From:  "The Coveted Driver's License: On Driving (Or Not) While Autistic":

Ultimately, I made the decision not to drive at all. It wasn’t worth the paralyzing anxiety I would experience each time I sat behind that wheel, never mind the risk to life and limb, be they my own or someone else’s. It can be inconvenient, sure, but thanks to the advent of social media, online shopping, and fast shipping, well, there are worse things than being a perpetual passenger.

That's just really relatable to me. I did eventually get my driver's license. I drove for a few years.  I'm glad I survived, and I'm even more glad that I didn't end up killing someone else.

I don't think driving problems are universal to all autistic people.  But I'm guessing that my aversion to and difficulty with driving is probably due to my (probably) being autistic. 

15. From: Virtually Real: VR and the Autistic Brain: by C.L. Lynch:

My husband now has the same problem. He has learned that I have an eight second lag between when he speaks to me and when I respond, especially if I’m absorbed in a task or reading something.

Other times I won’t respond at all, but when he prompts me, I will be able to think for a minute and then pull the memory of his speech from my mind. Then, I’ll be able to tell him what he said, like rewinding a video to find something you missed the first time around.

I do this quite often. I'm lost in my own thoughts. Someone says something. I don't hear them, and then I hear them a few seconds after they've already spoken.  I wonder if most people experience this...at least every so often.  Is it more common with autistic people?  

16. From: Emotional Overload and Aspie Understanding by aspieaspired :

We may not express how we feel until the emotions–good or bad– are about to bubble over.  Once those emotions do surface, we might not express them in a way that society deems acceptable.  But this very seldom equals dangerous.

I’ve thrown a cup before in anger and broke it. Same with a phone. I sometimes yell, slam things, and stomp my feet. Do I intentionally hurt people? Never. Do I vent emotions that have been bottled up for too long? Always.

I threw a plate once.  So I can relate to this.  And it wasn't really dangerous, because I threw the plate to the ground. I didn't aim at anyone...even, though, I was uncontrollably furious.  

It's not just hiding emotions from other people and letting them bubble over. It's also hiding them from myself.  I think I go through stages where I become very tolerant of micro-aggressions. I become easy-going Dina. And it feels so nice to just let things go, ignore them, avoid conflict, etc. Have peace instead of war.  The problem is, I don't actually forget the micro-aggressions. They linger in the back of my mind and later I start to feel less tolerant.   

When I threw the plate, though. That wasn't in response to a micro-aggression. It was blatant (verbal) aggression.  Funny thing is now I can't remember what was said that made me so mad.  I just know it had something to do with parenting.

17 From: "An Open Letter to Non-Autistic Friends and Family" by aspieaspired:

We know you try to relate to us, your autistic loved ones. We appreciate it; we truly do. But in many ways, many of us keep hearing the message from people that they can relate.  You really can’t.  I will try to help you better understand, in writing, because I can express myself with more clarity in text than I can verbally.  A few areas that you may think you are relating well to us include social interactions, noise over-stimulation, and misunderstanding.  You might be shy, sensitive, introverted, or quirky, but that doesn’t translate to understanding our experiences.

I tend to have issues with sentiments like this. 

One thing is how does anyone know for sure these people ARE non-Autistic.  What if they're undiagnosed? What if they're masking?  What if they secretly believe they might be autistic, and they are saying things in hopes you'll validate their secret self-diagnosis feelings?  

Another thing is, what's so wrong with them relating?  Every autistic person is different. Many autistic people hate going to the grocery store.  I love it...as long as it's not very crowded.  So let's say I'm in the room with a person who truly is definitely-not autistic and another person who is autistic.  Let's just give them names:  Doris (autistic) and Patricia (neurotypical).  Doris talks about hating grocery stores, and Patricia says she can relate. She doesn't like the noises, the lights, the stress of making choices, etc. Meanwhile, I'm totally fine with grocery stores.  In this instance, Patricia can relate more to Doris than I can! 

Now if someone relates in a dismissive way, that's another story. For example if Patricia says, Yeah. I can't stand going grocery shopping either. Lots of people can't. But you know, getting food is important for my family, so I make sure to do it. Everyone has their struggles, and you can't use them as a crutch.  

I'm not at all in support of that kind of awfulness.

But if Patricia says something like, I'm not autistic. But I really hate grocery shopping too. So I can relate.  I personally wouldn't find that offensive.  

18.  From: Logical Fallacies in the Facilitated Communication Debate by Michelle Sara:

I’m of the opinion that removing someone’s method of communication because they might accuse someone of abuse is inhumane. It’s not a decision made to protect the person communicating; it’s a decision made to protect everyone else. False allegations are not specific to FC. Using abuse allegations as a counter-argument is not a reason to prevent others from accessing it.

I think that's a good point.  

I've recently learned that one of the big controversies in autism is that some non-verbal autistic people communicate with something called Facilitated Communication, and the consensus in the mainstream seems to be that FC is a pseudoscience, and that facilitated = the facilitator is putting words into the autistic person's mouth.

I don't know enough at this point to know where I stand in the debate. And it might be something I stay on the fence about. I don't know....

I saw one place compare FC to using an ouija board. And since I was fooled for months with a ouija board, that part of me is suspicious of FC.  

BUT....

Just because I was fooled by a ouija board, it doesn't mean that all ouija board communication is a hoax.  And even if some people are purposely or subconsciously talking for nonverbal autistic people, that doesn't mean this is the case all of the time or most of the time.  

19. Also from above (in response to using analogies involving things like ouija boards):

These people fail to take into account that we are talking about a human being who is visible. Comparisons to people claiming to receive information from invisible beings are not relevant. Comparisons to unidentified flying objects are not relevant. Comparisons to Bigfoot are not relevant.

They are brought up to try and discredit the argument further, but they contribute nothing in terms of sound reasoning.

Well...so there we are with the ghost issue.

I do agree that there's a difference between communication from a being that MIGHT exist vs a person that definitely exists.

I'm big on using analogies, though. And I think communication can be very easily faked even from people who we know are real. This isn't just in terms of facilitated communication. We also have it with parents writing greeting cards and other communications in their children's (falsified) voices. Quotes are often falsely credited to the wrong people. People purposely cause conflict by passing on messages not actually said by others.....

With the deep fake issue added...you really can fall down a rabbit hole of distrust and paranoia.  

20 From:  FC, RPM, and how Wikipedia Became Complicit in Silencing Non-Speaking Autistics By Michelle Sara:

And, of course, there are everyday people who interact with those who use FC or RPM or other methods who need no convincing that their friend or family member is communicating authentically.

I very much prefer to be on the side of the argument that says FC truly works, but this statement doesn't convince me.

I think it's way too possible for wishful thinking to play a part in this. It would definitely depend partly on whether the friend or family member was able to communicate independently in the past.  Then one could compare communications in the past with those in the present.  Although this is far from full proof in either direction.  For example, someone who has a traumatic brain injury might not only lose the ability to write and speak but also have a profound personality change or a reduction in vocabulary.  

In the other direction, a family member might so badly want to believe that their loved one is communicating that they ignore communication patterns that don't fit with what they want to see. 

21. From: Sia's Film and the Deficit Model of Diversity by Cheyenne Thornton: 

Autistic people are frustrated because we exist, we act, we sing, we write, we dance, we consult, we do choreography, we design costumes, we build sets. We are vastly under-employed due to a lack of the right information and access to the right accommodations and acceptance.

Yet getting people to even know we are out here is like pulling teeth all because the same harmful organizations that show up at the top of every search related to autism and that market themselves as the experts in autism will not relinquish their many-million dollar hold on our narrative. These organizations follow the deficit model of autism.

22. Also from the above:

As an autistic writer currently pursuing an MFA in Writing & Producing for Television, I have seen the effects of deficit thinking in the media when it comes to my own work. I tell stories that feature disabled characters, but at least half of my feedback or contest submissions have been attacked for portraying autistic or otherwise disabled people in “unrealistic situations.”

I've been adapting my own novels to screenplays lately. I was working on this in the midst of my interest in autism.  Since three of my novels characters are very much based on me, and I now see myself as autistic, I decided to have one of the characters be officially autistic.  I labeled her autistic in the screenplay. She already had a little stimming going on, but I added a little more. I don't think I really changed anything else.  Oh! I mentioned that on a bookshelf in her mother's office, there are parenting books, and some of the books are about autism.  

I'm wondering, though, if I'd end up getting the same type of criticism. The: THAT's-not-autism. 

I had participated in a critique exchange kind of thing. I can't remember if I submitted the screenplay, though, after I added the autism label.  I think MAYBE I did?  And if I did, the good news is I received no complaints about the autism.  Well, only one or two people would have read that version, so it's not a huge sample size.  But still....


Well, this is getting long enough.  I've been working on this for a few weeks now, which I'm proud of.  I mean I'm not proud of what I've written. I'm proud that I took things slowly instead of my usual method of pressuring myself to finish a post in a day.  

I am planning to continue with more posts like this as I read more.



How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?   

The Dead are Online, a novel by Dina Roberts