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.
Read my novel: The Dead are Online
