Dimensionality Reduction

Dimensionality reduction is something I deal with in math, statistics, and engineering. It comes up in my research. The idea is that when data is complicated, because there are a lot of different kinds of information in it, we can make our lives easier by considering fewer variables. Sometimes we pick from the variables that are already there. Sometimes we smush several variables together and create new ones out of the results, then pick from those. Either way, it can be useful to reduce the number of variables, the number of dimensions, that we need to deal with in a complicated pile of data.

However, we lose information when we do so. Like everything else engineers need to do, there are trade-offs involved, and we need to recognize that. Dimensionality reduction means simplification, which can make large amounts of information easier to deal with. But over-simplification makes information less useful.

Using disability and access needs as an example:

I use a much more complicated thought process to decide what I can and can't do on any given day than people who know me might use to guess what I might and might not be able to do. This includes deciding when I'm just done for the day.

My major professor works with me in an environment (our lab) where my losing speech is most likely due to sensory triggers. If I lose speech due to sensory triggers, I'm leaving the environment where it happened. She knows that if I can't talk I'm probably going home. This is an appropriate simplification for the context.

However, when I was a graduate student in math, I most frequently lost speech in classes where I was a student because I'd already taught that day and I'd essentially run out of mouth-words. Nothing bad was happening, and nothing bad was going to happen because I stuck around and kept doing math without speech. My classmates and professors knew that if I couldn't talk, I was probably going to grab a whiteboard marker and start writing on the board instead. This was an appropriate simplification for the context.

Those are both examples of appropriate dimensionality reduction. In the lab, "can speak" vs. "arrived non-speaking" vs. "lost speech in the lab" was a 3-possibility variable that made a decent proxy for how I was feeling and how well I could work. In the math classroom, whether or not I can speak wasn't an important variable. 

Ignoring the variable of whether or not I can speak in the lab would mean ignoring useful information. Using the variable of whether or not I can speak in the math classroom might mislead people into finding patterns that aren't really there. So it's important to choose the right variables to focus on!



And yes, this applies to functioning levels. In addition to being ableist and grading against a neurotypical standard (which is its own, major issue), functioning levels attempt to reduce all the complex information about a persons abilities and needs over time and across a variety of contexts down to one dimension. That's always going to be inappropriate dimensionality reduction, simplifying what we know to the point that it's useless. Talking about low, medium, or high support needs isn't going to fix this problem. Neither will talking about low vs. high masking as if either of those means a single thing. Those still use a single dimension, and you can't shove enough information about what those support needs actually are, or what the specific effects of masking are into a single dimension for it to ever work.

Meltdown

Recently, a friend of mine asked what we wished others knew about meltdowns. (She blogged about meltdowns a while back, too. It was good.) This caused me to make words. Many words.

You see, I have experience at appearing to be more OK than I am. (I think a lot of people have this experience.) I have also been taught, in a variety of ways, that I should not show around other people that I am not OK. And the thing about getting around that is … it takes energy to break that, energy I might not have when I'm not OK. Often, holding on to some appearance of being OK until I am alone is cheaper for me than allowing myself to show that I'm having a problem. (I'm not faking overload. I might be faking not-overload.)

Now, there is still a point where I will melt down, like it or not, and there are limits to how much I can delay this. So it is possible for me to melt down in front of people. And most of the people I'm around would want to help, would want to check in to make sure I'm OK, that sort of thing. There's just one problem: I reach the point where I can put up an (unusually expensive) facade of OK before I reach the point where I'm actually ready to start putting myself together.

What this means:

If I look like I'm on the edge of a meltdown, there are a few questions you can ask me, one at a time. I'm not going to keep track of a bunch of questions at a time, really do stick to one. And do not touch me. I know people do light touch for reassurance but this is a bad idea. You can point out a spot that's semi-enclosed (corner, alcove, back to the wall) and ask if I want to sit there¹. I probably will. Don't push it if I say no. You can offer me a satin-bound blanket or a fidget toy. I'll probably take you up on either (or both) of those, but again, don't push it. And you can ask if I'd like you to leave me alone. I might say yes, but I also might say no – sometimes, especially if I've got another event coming up sooner than I'd be able to have the meltdown and start putting myself back together afterwards, I'm going to prefer to keep delaying. I'm better at delaying than I really should be, but sometimes this unfortunate skill gets used. But if I say yes, it's time for you to go away, and not come back until either I come looking for you or until the next day. Don't come check on me to see if I need anything. Don't come check on me to make sure I'm OK. Because your presence would mean my training to appear to be OK would make me appear to come out of the meltdown sooner, and because this is actually bad, doing either of those things is very likely to ensure that I am not OK. It will cause me to put the facade of OK up before the actually OK gets going. It does not matter how many times you tell me I don't need to put that facade up for you. I will not, in that state, be able to stop myself from doing what I've been taught I need to do. Stay away. No, you are not the exception to this, because there are none.

If I am actively melting down, that means I'm in bad enough shape that I can't hide it. That's not good, but that does mean there are some things you might be able to do before I've got enough juice to run the facade (and not enough to stop myself from doing so if there's anyone around.) First, do not touch me. Second, if I am not already curled up in a corner or alcove or with my back to the wall, offer to help me get to one of those positions. If I say yes, you can lead me to one. (See above: do not touch me to lead me.) Third, if there's a soft, satin-bound blanket around that I am not already in possession of, putting it near me is a good idea. (Not on me. Again: do not touch me.) If I don't seem to understand the offer, this is a cue to leave. Fourth, melting down burns a lot of energy. I am going to be tired, hungry, and thirsty. If you can put food and/or liquid that is ready to be consumed far enough away that I won't accidentally hit it while rocking or flapping, but close enough that I don't need to interact with any people to get at it, this is potentially useful. (Post-meltdown, I am even more likely than usual to get lost somewhere in the process of attempting to create and consume food.) Once location, blanket, and consumable objects are either taken care of or not, it's time for you to go away. The same rules apply as if you were heading out before I actually melted down.

Counterintuitively, if I start showing any signs of being OK again after I melted down, that's the point where you absolutely must leave now. I'm not OK yet, but I'm starting to be able to fake it and you need to go away so that I can choose not to do so. Those rules from heading out before I actually melted down? They still apply. You need to go away.

1  Weird as this may seem, if I'm going to the corner or grabbing the blanket on my own, that's a good sign. It means I've caught on to the low energy in time to drop the performance, which will buy me more time able to do stuff before I run out of energy entirely. It also means I'm still in good enough shape that if I felt I needed to just leave, I could have done so. This is the part where you get to see a person getting stuff done while visibly autistic. Just like the times where I'm pulling out a whiteboard marker, pen, or tablet to go to class non-speaking, I'm actually fine. Appearing to have my neurotype is not an emergency.




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Alyssa Reads Uniquely Human: Wrap-Up

I read Uniquely Human, and I went through it chapter by chapter, plus all that material that's not in a chapter. At the end of it all, here are my thoughts:

• This book is still pathology paradigm/behaviorist model. It's just considering that there is, in fact, some rhyme or reason to the behavior and focusing on the cause of the behavior as a way to reduce it. (Same bad model, just using it to say better things.)
• The descriptions of how and why we act are definitely behaviorizing, or at best partially behaviorizing. See Disability in Kidlit here for the explanation of what I mean by that.
• For calling autistic people experts, he really doesn't pull much that's credited as being learned from "an autistic adult said this."
• What crediting of autistic adults happens leans very white, cisgender, heterosexual, educated, and middle to upper class.
• Even the chapter called "The Real Experts" has very little content that is what we say or how we say it. Most of it is anecdotes in which he shows our behavior.
• He occasionally conflates tantrums and meltdowns. There is, in fact, a difference.
• Dr. Prizant is far more trusting of therapies and professionals in general/by default than I can trust or endorse. He may have shared a parents quote about not being able to trust professionals as far as you can throw them, but his writing indicates that he himself does trust professionals.
• I do not even vaguely trust the reader (or really trust Dr. Prizant) on what the "successes" we celebrate are. The goals described read too much like "acting less autistic" (but by reducing anxiety!) in ways that conflate "acting autistic" with "showing distress in autistic-typical ways."
• This book minimizes some major problems: electric shock and other painful punishments are depicted as a thing of the past, Lovaas as one of the first autism experts (never mind that he's one of the people who used shock,) and similar.
• There are times where a trait he mentions is relevant and makes a "lack of social X" argument redundant or unneeded, but he makes the "lack of social X" argument anyways.
• One case here is a students refusal to complete an assignment that he can't make sense of being explained with not understanding that he should make an attempt anyways to please the teacher, rather than "Ok but this is so inaccessible that there is no attempt I can make."
• Also there's the bit where we have a communication disability, and we're pretty explicitly taught not to express discomfort or displeasure, but apparently our not communicating when things are bothering us is because we lack this social instinct?
• There is an overarching pattern where Dr. Prizant comes up with a good point but doesn't follow his own logic fully.
• He writes his dissertation on functions of echolalia (and does research on functions of scripting,) finding that they have all the same functions as spontaneous language, but then aims to reduce scripted speech. His SCERTS model privileges "spontaneous" speech over echolalic and scripted speech.
• He points out some issues with intervention "for autism" in the introduction but still supports plenty of things that are "for autism" later.
• He points out that "unpredictable behavior" usually means that the person describing or observing us doesn't understand the pattern, but still describes things as unpredictable.
• He points out that we might find different things challenging than neurotypical children. He misses that running out of gas faster under higher stress doesn't imply a lower threshold or a smaller tank.
• He argues against portraying autism as a checklist of behaviors, but then tends to start anecdotes about children by... listing behaviors.
• He talks about trauma but also says that our trauma and flashbacks are not PTSD for reasons that he never explains. (If it walks, talks, and quacks like PTSD... it's probably PTSD.)
• He points out that there are good days and bad days, that abilities aren't static. He still treats selective mutism as if it's definitely not a "can't" talk in the anecdotes where it is mentioned, because the person can talk. I can generally speak, but when I stop it's because I can't flipping talk. Though to be fair, if I were to have a conversation with this guy I'd probably type for reasons other than "can't speak."

At the end of it all, there aren't too many people I'd suggest the book for. I wouldn't give it to a parent whose kid was recently diagnosed and who hadn't learned to be all behaviorist yet. I wouldn't give it to someone who knew nothing about autism and knew it. I wouldn't give it to an autistic person, OMG NO WHY.

I would, however, consider suggesting it to an educator or professional (or maybe parent) who had already learned to view autism as a checklist of behaviors and deficits, and who I didn't think was going to stop doing that any time soon. Maybe. Still iffy because of essentially the difference between 1984 and Brave New World: Yes, only one of these is torturing people to control them, the other is quite a bit more subtle in its control and using what people like (along with many other signs of dystopia), but these are both dystopias. One gets into a wrestling match to force eye contact while the other holds a desired toy between the eyes to induce it. Both are pushing for a neurotypical performance at the end of the day. The first is obvious in its abuse, while the second... it's not as immediately and obviously traumatizing but that could make it harder for people to realize the problems and can lead to trauma that others won't believe even was trauma. Both are still dystopias.

Dr. Prizant is teaching people to make a nicer-seeming dystopia and call it accepting autism. It's not neurodiversity, and it's not accepting autism. It is sometimes doing things that make us more comfortable and less anxious, but with the idea that this will make us appear less autistic because autism gets conflated with autistic ways of showing distress.

For folks who'd like to go back and read my more specific thoughts, here's the rest of the series. Note that the part number within my reading is always 1 more than the chapter number because I started with everything not in a chapter.

1. Everything not in a chapter 
2. Chapter 1
3. Chapter 2
4. Chapter 3
5. Chapter 4
6. Chapter 5
7. Chapter 6
8. Chapter 7
9. Chapter 8
10. Chapter 9
11. Chapter 10
12. Chapter 11
13. Chapter 12

The Beginning of Her Hell

It's another short story! This time, I'm following an autistic girl named Leah, stopping in to take a look every so often from when she's about six months old through sometime in high school. Other people are... realistically terrible.

You can get The Beginning of Her Hell on Amazon for $0.99.

Image is of the cover of "The Beginning of Her Hell." The title is in orange text along with the author's name, Alyssa Hillary. The background is white, with a pair of blue eyes looking out over a typewriter.

On Knowing

There are parents, apparently, who don't tell their autistic children about the diagnosis because they are afraid their children will be bullied. That's not going to work, and depriving people of useful knowledge about themselves in a failed attempt to protect them from something else is just a really bad idea.

I understand the fear of being bullied. I really do. I was bullied, as a kid. A lot. Not as continuously or as obviously or as physically as, say, Neurodivergent K, but I was bullied. All through third grade, there was a pair of kids who would spend the entirety of chorus meetings using my literalism and dislike for errors against me and then call me ret*rded. They would step on my feet when they had the chance, too.
A teacher actually hit me with a book that year, too, because I was clumsy and hit my head on the slanted ceiling every day.

Everyone made fun of me for my really, really bad hiccups too. They'd insist that my hiccups making my jump was a purposeful thing "for attention" as opposed to something that... well, hiccups still sometimes make me jump. Part of that is my startle reflex, also a target for the bullies, and part of that is that the diaphragm is a strong muscle! Also my medical history does include a rare thing where the other people with it got really bad hiccups. Like, this is not me trying to get attention. There are better methods, like doing algebra at you while being nine. Hiccups just suck.

Here's the thing: this wasn't the result of me knowing I'm autistic. It wasn't the result of my parents knowing I'm autistic. It wasn't the result of my teachers knowing I'm autistic. It wasn't the result of my classmates knowing I'm autistic. I know this for a very simple reason: No one knew I was autistic. No one. Didn't stop the bullies.

Things actually got better once people knew, particularly once I knew but really it was people in general. My classmates this year were supportive and told me things like "My presentation has a video in it, bring headphones to class just in case" ahead of time. My teachers were supportive and told me things like "Email what you wrote to me after class" when speech goes kaput and I start typing instead, but don't actually ask a classmate to read it aloud for me.

Not everyone will be that good (they should be, but they won't) when there is a label. But the fact is, autistic people get bullied in ridiculously high numbers because people can tell we're different and decide that's an acceptable thing to prey on. That happens with or without an official label for the way that we're different. The label and the lack of a label can both be used as excuses for the bullying and the general terribleness, but neither is the actual problem. Telling us that we're autistic isn't going to make the bullying worse. (If our teachers are sufficiently terrible, telling them might make it worse, but telling us? No. That won't make it worse.)

Disability Fearmongering Rhetoric Disorder

DFRD

Terrifying statistics, epidemics, children stolen by an unknown foe,
No person stealing us away, an abstract idea of miswired minds,
Of lives gone awry when the menace struck:
Disability Fearmongering Rhetoric Disorder.
DFRD, it leaves families empty and lifeless.
The tricksters laugh on, they need not steal what we throw away.
No need to hide what's presumed gone,
No need to take what's ignored in favor of fear.




So um this one got inspired by Amy's post about Autism Speaks Rhetoric Disorder (ASRD). I used a different name because it happens with other disabilities too and because Autism Speaks isn't even the only offender for autism. It's the biggest one, best funded one, here in the USA, but it's not the only one and I don't want to let the others slip under the radar, especially not Generation Rescue, considering that they actively promote stuff like bleach enemas and chelation.

Autism Fearmongering Rhetoric Disorder (AFRD) is a subdiagnosis of DFRD, with the Autism Speaks specific Autism Speaks Rhetoric Disorder a subcategory of AFRD. April is the awareness month for the entire Autism Fearmongering Rhetoric Disorder subdiagnosis, with Autism Speaks Rhetoric Disorder perhaps the most widespread due to the organization's large reach.

Love, Not Fear

This is for the Love, Not Fear flashblog happening tomorrow, done by Boycott Autism Speaks. Figured I should start off with that. Also, I saw Neurodivergent K's post before mine posted and it's saying things I would want to add, so I'm just gonna leave you with that link... the Litany Against Fear is really cool, and the way she added other stuff in between with relevancy is really cool and I kind of wish I'd thought of it.

So, what does "Love, not fear" mean to me?
Um.

I think love and fear can exist together, actually. Love of, fear for. Fear of autism and love for autistic people don't go together, certainly, but fear of what others do to autistic people can totally go with love for autistic people. And I'll admit it: I'm often afraid. I'm scared of the ways people limit our language use, and I'm scared of the things parents apparently think it's acceptable to do to autistic people, and I'm scared of a whole lot of other things too. Because love, I stand and fight these things that I am afraid of. Not autism, I won't fight a part of a person, that's not love for the person. But the terrible things that others do in the name of fighting autism? Because I love autistic people, I will fight those battles.

Love sometimes leads to fear that others will hurt the ones you love, and it sometimes leads to anger about the ways others have hurt the ones you love. But it also gives the courage to stand up and fight against those horrible things. Love gives the strength to say "I am afraid, and I will love anyways."

Am I afraid of the effects of autism's demonization? Yes. I am.
Do I fear autism? Do I fear autistic people? No. I don't. That's not love.

And I will close with a thing I remember from a series that I think was called Fearless. The idea was that courage doesn't mean "I'm not afraid at all." It means recognizing what it is you're afraid of and doing what needs to be done anyways because we love. Feel like Nita from Young Wizards would do that too. (Yeah I'm apparently in a book reference mood.)

T21 Blog Hop: Disability Acceptance

So Down Wit Dat hosts a blog hop on the 21st of the month for three days (3x21) and despite the name, it's not actually just for Down's. It's for any disability stuff. So I'm doing a thing! I'll add the linky list at the bottom of this post once it actually exists.
Because this post also fit the October 2014 theme, I put it in again, here's October 2014's hop.

Trigger Warning: Ableism

Anyways, disability acceptance is my topic of the day, because people seem to mix up what that is. It's not leaving disabled people/people with disabilities (I'm just going to go with "disabled people" for the rest of the post but yes you count even if you use different language) without education. It's not a sense of "I accept that you're not a real person and I love and care about you anyways." It's not using the fact that we can't do certain things (what those things are depends on the disability and the person) or that certain things are harder to learn/do (ditto) as an excuse to never let us become adults. It's understanding a few things.

1. Some of us think "Disabled" and/or some of our specific disability labels are defining factors in who we are. Not the only ones, but among them. Some of us don't. We're the ones who decide that about our own disabilities.
2. We're real people with thoughts, feelings, hopes, and dreams. Some of us have different dreams than you might expect. Some of us enjoy things you might find weird. Strange as some of them might seem to you, if we say we enjoy something, that probably means we enjoy it, and you shouldn't be feeling sad about the time we spend doing it instead of doing things you think we should enjoy.
3. There will be things we can't do. Disability kind of implies that. It's not "letting our disability win" or whatever other loads of nonsense people come up with when we admit that. Finding workarounds, accommodations, and good technology is the way to go.
4. There will be plenty of other things we can do. Some of these may be things where you'd expect our disabilities to be a problem. Others won't be.
5. Not letting us try a thing because you think our disability will make it a problem is not OK.
6. Similarly, not providing proper education because of our disability is not OK.
7. Neither is insisting we just try one more time for a skill that it's clear we just don't have. Clear to us is sufficient. Most of us have limited energy, and proving one more time that we are, in fact, unable to do certain things (see item 3) takes up energy that we often can't afford to spend.
8. Sometimes we have the ability to do a thing, but it's hard and takes up more time and energy than we think it is worth. Getting help with such things is appropriate and not "Letting Our Disability Win."
9. There will also be things we just don't like doing. This may or may not have anything to do with our disability. Sometimes it just has to do with item 2: we're real people.
10. Telling us we're using the wrong language to refer to our own disability is rude. Letting us know that Specific Person X has expressed a different language preference for themself than the one we used describing them is not rude, so long as Specific Person X actually has the preference you're saying they have.
11. The following phrases are almost always used in ableist or otherwise bad ways and you should be aware of this:
1. "Not Like My Child." (Yes, we are.)
2. "Letting Their Disability Win"
3. "High Functioning" and "Low Functioning" (Seriously the whole concept is nonsense)
4. "Does Not Communicate"
5. "Noncompliant"
6. "Using Their Disability as a Crutch/Excuse"
7. "Mentally age x"

Language for Perspectives on Disability

Trigger Warning: references to ableist slurs

It's for the class, Perspectives on Disability.
The question is:

What language do you use to talk about disability? Why might person-first language be helpful?

Yeah, it's leading. It implies that person-first language is inherently better, which, um, no. And the professor has a stepson with autism, so... this is going to be fun. Here's the answer I'm giving.

The language I use to talk about disability varies depending on many factors. The first factor is who I'm talking about. If I'm talking about one specific person, the language preference of that one specific person is the only factor I'm going to think about. That's it. The language they want used when referring to them and to their disability is what I'm going to use. Sometimes that means "person with autism." Sometimes that means "Autistic person"- that's what I am. Sometimes that means "person with CP." Sometimes that means "palsy person." Yes, I really do have a friend who has palsy person as one of her accepted terms- she blogs at That Crazy Crippled Chick.
If I'm talking about a group of people, my language depends on the group. If it's a group of people who are together as part of an organization, I look up the organizational preference. Sometimes that's person-first, sometimes it's not. The Autistic Self Advocacy Network (ASAN) uses identity-first language. TASH accepts both, largely because of working with ASAN and the ASAN people wanting to be able to use identity-first language when talking about themselves. Some organizations will want "person with a hearing impairment." Others will want "Deaf people."
For a group that's outside an organization, I check on the individual member's preferences. If I can't find theirs, I see if there is a preference for their specific disability as a whole. (Blind/with low vision, Deaf/with hearing impairment, and Autistic/with autism are examples of there not actually being a consensus, no matter what people on the individual sides may try to tell you.)
The language the people use talking about themselves can provide clues, too. When I talked about Ethan, the author of "Ethan's Story: My Life with Autism," I could guess from his language that he prefers person-first, so I used it. I called him a person with autism.
When there really is no way to tell what the preference is for the people being talked about, it can go one of two ways. If it's autism and I can't tell, I default to my language preference, since I am Autistic. Otherwise, I go for "what is the majority preference of people with this disability/these types of disabilities in my audience?" followed by "what is the majority preference of audience members in general?" When I wrote a piece for ASAN about the use of the R word, my use of "people with developmental disabilities" came from majority preference of people with these types of disabilities- autism isn't the only developmental disability out there, not by a long shot, and as far as I know, none of the others have major pushes for identity-first language going on. With "the whole internet" as my potential audience, I went for person-first language.
Person-first language has things it was meant to do when it was first put forth by self-advocates. Those are good things. It's supposed to be about seeing people as people. It's supposed to be about respect. It's supposed to be about recognizing humanity, essentially. For people who prefer to be referred to using person-first language, it is the most respectful language to use. For most disabilities, it's a safe default, too. That's another use. It's better than assuming we know a person is suffering because of disability, certainly- I'd not censor someone who does think they are suffering from something, but it's really presumptuous to assume that they are! So that's another way that person-first can be good- it beats a thing that's presumptuous as can be. It's just not something we should insist on using to describe people who don't want to be described that way. That's about respect too.

Answering Questions

Trigger Warning: References to murder of people with disabilities, presumptions of incompetence

The questions are in a comment on Mama Be Good.

What Does The Neurodiversity Movement Want?

And the Sue Rubins, Tracy Threshers, Larry Bissonetes...are they the exception rather than the rule? Since Tracy and Larry still use FC, does that diminish what they say?I studied under Doug Biklen and others at Syracuse University, but still could not believe that inside each and every person with autism was an 'intact brain' that could read and write.

So do the neurodiveristy people want those of us who are educators to leave the very impaired young people alone, to 'be' who they are, and support their very substantial needs?
So that leave me as an educator and therapist confused about what to do in my role in the schools.... reduce stimming? Support stimming?

(This isn't the whole comment. I just pulled questions out, mostly.)

Without people actually presuming competence and trying to teach everybody, you'll never get an answer. The results of folks actually trying this stuff suggests that they are actually the rule, not the exception, but if you act like it's an exception and don't try they're going to look like an exception. (No one needed to try to do what I did, because they couldn't.)
There are some people who can't use language. Amanda Baggs has written about them some. She's actually one of the people where I'd suggest reading her whole blog, even though I haven't finished doing so yet myself.
There are people FC doesn't work for, because they don't use language. (I think Amanda talked about that on her Tumblr, not her Wordpress.) They aren't having great successes with it, though. Because they don't use language. This is a thing that exists. It's not the same as not speaking, and it's not the same as not being able to start typing independently straight off, and it's definitely not the same thing as non-speaking, trained cat to facilitate typing at need, so without trying, it's not safe to assume that it won't work, that the person can't learn to type. (If you can control what a person types by putting your hand on the small of their back, please, do tell- this is not a thing that makes half as much sense as "the person can type and has movement issues" but it's a thing that some people like to say sometimes.)
So, no, not every autistic person can learn to read and write because of the whole not everyone uses language thing that Amanda likes to point out, but trying to see if they can? Kind of important. Trying all the ways? Kind of important.
Now.
I can't speak for every neurodiversity activist, but these are some guesses I can make. I am a neurodiversity activist and I want these things, and I know other neurodiversity activists wanting those things too, generally. Assume that I have left out a bunch of stuff, though I think that "want people to be accepted as people" should get most of those things to logically follow.
Neurodiversity activists want you to stop making false binaries.

• Leaving people alone and trying to force them to be normal are not the only choices, and if you've ever raised or taught a weird but presumably NT kid, you already know that. It still applies- there are more than two options.
• High functioning/low functioning aren't lines you can really draw well, and trying to say who is and isn't OK based on those attempted lines? Not good.

Neurodiversity activists want people to be accepted as people, regardless of what their abilities seem to be and/or turn out to actually be once you try teaching them/seeing them as people. This includes people who don't use language.
Neurodiversity activists want you to realize that advocacy is for everyone, and it doesn't always look like your picture of it. I want you to read Amanda Baggs piece on this in Loud Hands: Autistic People Speaking as well, FYI. I can't link it because I don't remember if/where it can be found online.
Neurodiversity activists want to be a part of the broader disability rights movement. We think getting excluded from a disability rights movement because of our disabilities is pretty ironic, FYI.
Neurodiversity activists want people to quit using evolution arguments in eugenicist ways. I'm going to put on my scientist hat and say that those people are doing science wrong. Evolution isn't stepwise, so calling autism the next step in human evolution is just silly. Diversity is a thing that nature has been "willing" to pay a pretty high price for, since environments change and therefore the most advantageous traits to have will change- and so will the most advantageous ratios of different kinds of traits, since having one species that does all the things isn't actually how this works. Ecosystems have niches, filled by different species that do different things. Human societies have niches too, best filled by different people with different things they can do. And when times change, the different kinds of niches change in number. Keeping as many traits around as possible is evolutionarily advantageous, and yes, that means heritable disabilities, and yes, that means heritable mental differences. I should not need to explain the exact use of every single possible difference because neither I nor anyone else can be reasonably expected to know all of those answers.
Neurodiversity activists want you to realize that a person's education does not require that they be "table-ready." Sometimes, it depends on remaining table-unready: mine continues to. [That's a big loud NO to suppress stimming. Go ahead and help a student find substitute stims, working with them on this, not saying which ones must work or anything, should there be one or two that really do cause problems in the classroom, but also be accepting of the fact that the substitute stim will probably look weird too, and of the fact that sometimes they really are just going to need to step out/to the back for that stim.]
And what might be the biggest thing of all:
Neurodiversity activists want you to quit murdering us, and to quit calling it mercy or making excuses for other folks who do it.

What Does The Neurodiversity Movement Want?

What Does The Neurodiversity Movement Want?

That's Not What It's About

Trigger Warning: ableism, ABA, 

I saw some stuff (was directed to it, really) on Autistic Pride Day that I wish never was. Autistic Pride Day is Autistic pride, not passing pride or ABA pride or pretending to be normal pride. It's definitely not parental pride for a kid who is passing because ABA taught them to pretend to be normal at all costs. It's definitely not sibling pride for that.
That's not what Autistic Pride Day is about.
There probably is someone who would actually say this sort of analog, which is horrible, but for anyone who can actually see how misplaced it would be (please, tell me you can see it, please...) this would be similar. (I'm something non-binary for gender, bi/pan area for romantic attraction, presumably the same for sexual attraction but pretty close to asexual, just so you know: I'm not a cis-het person making an analogy to Queer issues.) So, the analog, written like it was a sibling writing this:

On Pride Day, I just wanted to talk about my sister. She's bi, and she's... androgyne? I think that's the word. But she's made so much progress! She's been working at it, and now you can barely tell that she's bi or androgyne. She'd have to tell you, or you'd never guess. She's been working hard her whole life to get to this point, and I am so proud of her.

Yeah. That sounds pretty horrible, right? (Yes, Lovaas, I know you'd find this totally appropriate too. I know because you tested out your behavioral stuff on feminine boys/possibly transwomen who you thought were "at risk for homosexuality" in addition to autistic people. Heck, I don't even know which group you thought of as your main group and which was the side project, if either. I really don't care, it's horrible for both regardless. I know most ABA people don't like to talk about that, but yeah. Same person, same methods, trying to make people not Queer and not autistic.)
That's what it sounds like, when you write about how proud you are of your kid for seeming less autistic or how if you look past their autism/don't think of them as autistic and that's why you can see the awesomeness on Autistic Pride Day.
Autistic Pride Day is about being proud of who we are as autistic people. It's not about being proud of who we are because we can pass. That's seriously not inclusive, not all of us even can pass. I can only pass when people are really clueless, and I suspect most of you reading this will think of me as the high-functioning goal for your kid or something. (If you want your kid to be like me, stop teaching them not to flap or rock or spin, stop demanding they sit still because guess what I can't do those things and that's OK. Functioning labels aren't great, and I'm not the "high functioning blogger" you might think of.)
It's about "I'm Autistic and awesome!" and "My autism helps my awesome this way!" and "I don't pass and that's fine" and "Ha ha ha stim ALL the stims because stimming is awesome and you should be jealous because I can experience the win of a good stim buahahahaha!" It's not about pretending not to be autistic, it's about celebrating who we are, blatantly and proudly and obviously autistic.

Autism Acceptance Is...

Autism Acceptance is saying that autism is not inherently bad or inherently good. It's saying that to make such a statement is just as nonsensical as classifying neurotypicality as inherently good or bad. It's accepting Autistic people and autistic people and people with autism as people who are wired differently, and that's fine. A cat is not a defective dog. A linux computer is not a defective Windows machine. An Autistic person is not a defective neurotypical.
Autism Acceptance is saying that Autistic people are not just like neurotypical people, that we never will be, and that's OK.
Autism Acceptance does line up well with what many neurodiversity advocates aim for- we are wired differently, and we support the strengths people have and we find ways to accommodate for the weaknesses, both those which are considered disabilities and those which are simply considered differences.
Autism Acceptance means supporting the Autistic person in learning the things they want to learn and in gaining the skills they need for what they want to do.
Autism Acceptance is the radical assertion that at the level of broad, overarching principles, what Autistic people need isn't that different. We need to be accepted for who we are. We need to hear that we're OK, we need to hear that the things we have trouble with don't make us broken or lazy or horrible people. We need people's actions towards us to reflect that. We need people to listen when we say we need help, and we need people to listen when we say we don't. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities.
Would you want to go without those things? No, I didn't think so.
Regardless of neurology, people need those things.
Autism Acceptance is just reminding us that Autistic people are people, and that as such, we need those things too.

Autism Speaks, I Want To Say

Before I even watched the documentary, reading your description on your site gave me a pretty good idea about what I want to say.
From it:
Autism Speaks, I want to say that for something "about" AAC, the described focus is all wrong. It shouldn't be about the parent's emotional struggle to communicate because it's about the kids. It shouldn't be highlighting the increased diagnosis because that's not the point of AAC at all. The hope and promise of AAC is potentially good, though knowing your organization, I wasn't convinced the hope and promise that you described would be the one of "how this actually helps AAC users."
Watching it, in the first minute I had to pause, cringe, wait to calm down. There was SO MUCH touching of the kid, and there was no way to get his permission because he didn't have his AAC out to answer or anything. Yes, I know that she's probably his mom, but... I'm Autistic. I have touch sensitivities. That kind of constant light touch drives me nuts. Then they got him set up. (He's using what looks like FC?! Was not expecting Autism Speaks to use that, I'm... actually kind of impressed by that, but, like, why "I am excited"? That's not actually telling us what he wants to say, which is the title of this...
And then they call autism a nightmare. NO NO NO NO NO.
Autism Speaks, I want to say that you need to stop using that kind of rhetoric because it is actively hurting the population you aim to serve. I don't care why you think calling autism a nightmare is OK, I don't care what context you think you have to justify it, you need to stop doing that, and NOW.
Autism Speaks, I want to point out the irony in having your autism expert say on camera that other's ignorance is responsible for some of our suffering when it is your brand of awareness that causes it. Yes, you. I have dealt with the ignorance of "never heard of autism before" and I have dealt with the ignorance of "educated on autism by Autism Speaks." The latter is far worse. Autism Speaks, I want to say that you are part of the problem by your own description.
I don't know if the things that we see on the screen next were things that the featured AAC users actually typed, but if it was not by them, another person with autism, or an autistic person, then it should not have featured. It's dishonest to mix things AAC users actually typed with things that we only imagine them to have typed, so it needs to be clear which is which. (I could see those things having been typed by a person bearing the education of Autism Speaks on what it is to be autistic, what it is to be non-speaking, so I could believe that this paragraph is moot. But I could also see it not being moot, since we know that Autism Speaks has written in first person about things that they are not in the past.)
And then we cut to kids doing things that I have done, some of which I still do. I suppose it is supposed to be illustrating how different and tragic we are? I don't know, they just look like kids to me. Autism Speaks, I want to know what the purpose of that was, because different and bad are not the same and either that scene was pointless or you're using the merely weird as evidence of bad.
Almost 3 minutes in, we see an AAC user typing a thing that has substance. "I am ready to change the way people view us." So am I, so am I. Autism Speaks isn't going to do that in the way I'm guessing and hoping you would like to see, always viewing you as a cut below normal, but goodness do I want the way people view us to change. It's part of why I'm here.
Now we get to the part that highlights the increasing diagnosis.
Autism Speaks, I want to say that you really need to quit it with comparing autism to AIDS, diabetes, or cancer. Not that those are particularly great to compare to each other, even, but they all have "has the ability to be fatal on its own" in common, at least if left untreated. Autism can't do that. Autism Speaks, I want to say that you need to stop comparing autism to death, stop calling autism a nightmare, stop making it about the parents, stop focusing your conversation, well, anywhere except the autistic people and what will help us most. (Hint: Actually giving nonspeaking people iPads and other AAC devices and paying for them to be taught to use them is a better use of your money than pretty much anything else you do, including making this video.)
"He's really sweet for being an autistic child."
Autism Speaks, I want to say that if you have provided the education that leads people to think that is a compliment, rather than the statement that autistic children, autistic people, can't be sweet, then you are Doing It Wrong. And yes, I feel safe saying that you're the group that provided the "education" leading there. Acceptance does not mean thinking we are sweet... for autistic people. It means understanding that we have the full range of sweetness and meanness and happiness and sadness and anger and frustration that all people have, realizing that anything ending with "for an autistic person" is stereotyping us and going to be wrong, going to be bad.
Autism Speaks, I want to say that leading parents to believe that they know for sure that curing their childs autism would lead to them having a happier life is not autism acceptance. I want to say that it is, in fact, the opposite of acceptance, and it isn't even true. Being autistic doesn't prevent happiness. It is a failure of this "theory of mind" so many claim we lack to assume that we must view our lives as you view them. Remember that we have never lived another way, remember that autistic people have this tendency to not like change, remember that our life of experience will still be of things that line up with autistic, remember that there is no way to make everything as if we never were and that a neurotypical mind with autistic memories is not a combination that is going to work well. It is one that will lead to all kinds of confusion, all kinds of pain. Happier? I doubt it. More normal seeming? I'm sure of it. And I think that conflating normal with happy is one of your main rhetorical issues. Maybe it always has been, that and conflating different with bad and the specific difference of autism with death and despair and nightmares of your own creation.
And Autism Speaks, I want to say that speech and communication are not the same thing. In a piece about AAC, you should know better than to have the two conflated. It's not the same. Some autistic people will develop speech "on time," others later, others never, some speak and then stop, and keeping speech linked to what we want to communicate takes a lot of work for many of us. Keeping our AAC linked to what we want to say is often easier, even for those of us who do speak. Typing is more reliable communication than oral speech for many of us.
Autism Speaks, I want to say that the purpose of AAC is communication. It is not, was not, should not be to make us more normal, but to let us express ourselves as we are.
Autism Speaks, I want to say that conflating whatever it is that means a kid is in constant pain with the fact that he is autistic? That's not responsible. Like, at all. Because, yeah, sensory issues are a thing, but "failing to accommodate sensory issues" isn't autism, assorted chronic pain conditions aren't autism, autism on its own doesn't do that.
Autism Speaks, I want to say that "swallowed by his autism" isn't an OK way to describe anyone. Ever.
Autism Speaks, I want to say that not being able to communicate in ways that others understand does not imply a disconnect with the world as a whole, just with the people who can't understand. There is a lot of world besides just other people. And there are a lot of things that can be communicated through behavior, even negative behavior, if only you know how to listen. "Autism Speaks, it's time to listen." Sound familiar? Well, Autism Speaks, it's time to listen to the behaviors in front of you, because behavior is communication and part of meeting us halfway is understanding that, even if it takes longer to figure out exactly what it is communicating.
Autism Speaks, I want to say that oral speech and communication are not to be conflated. Even in a video about AAC, you are making that conflation. It needs to stop.
Autism Speaks, I want to say that realizing that every autistic person whose hands you got communication into could, in fact, communicate, was, in fact, competent and thinking, should be a step. It should be a step towards presuming competence for all autistic people, for getting communication into the hands of all autistic people. If you are truly out for our best interests (I know you aren't but hey, let's offer up what you would do if you are,) the thing to do is to make sure that every autistic person has access to AAC, that AAC meetings are one of the first things done. Maybe the first. Because an autistic person who communicates in ways that others understand can and should take an active part in deciding what to work on and how. An autistic person who types can speak for themself.
Autism Speaks, I want to say that "these children are normal!" is not the proper follow up to the glimpse of understanding that they are competent. They are wired differently in fundamental ways, they experience the world differently in fundamental ways, just as I do. They are not your illusion of normal, and they never will be, and that's fine. They don't need to be. They are human, and they are autistic, and they are completely distinguishable from their peers, and all of these are fine and good and none of them contradict each other and normal is an illusion that no autistic person should be forced to emulate.
Autism Speaks, I want to say that normal isn't the point. Normal was never the point. AAC is for communication, not for normal. If it were for normal, I would have let people thought I was "just quiet." No, I am a part time AAC user, and my friends have, by and large, seen me use it. I've gone out and socialized beyond what I needed to do, using AAC, because I wanted to spend time with friends. If normal were the point, I would have gone home. None of them had realized speech had gone kaput on me until I pulled out the iPad. But communication is the point, along with everything communication can lead to. Socialization, writing things that move others, telling others about your decisions and, if so chosen, why you made the decision you made. Wants, needs, hopes, dreams. AAC lets us tell of those. It's not about normal, it's about showing the unique and completely distinguishable selves that we are.
"I want to say I think technology has changed my life. I can communicate with the world, and I have choices in my life." Yes. She gets it. Most of this video suggests to me that you don't get it, Autism Speaks, but she gets it. She knows what this is for, she knows how this makes her life better, and those words are the sign of a self-advocate blooming. (Yes, self-advocate. Right now, she is advocating for herself, though if she does as she says she plans, the activist is coming.)
That's not to say there was nothing good here. They showed a range of people. They showed boys and girls, they showed people of color. They showed what looks like reading off what they had typed, which is related to how AAC helps people develop oral speech. (Yeah, AAC use makes nonspeaking autistic people more likely to develop oral speech and to do so faster. Also, for part-time users like me, I find that "reading things I have already typed" lasts longer than "just speaking" when speech is going kaput.) They showed Kayla, the same one who typed about technology changing her life, being at what seems to be college. Yes, college.
But those good things don't make the video as a whole good.
Autism Speaks, I want to say that your metaphors and rhetoric for autism are just as damaging as ever, just more manipulative and better hidden. I'm not sure that's actually better.
Autism Speaks, I want to say that your videos about us aren't even really about us, but about our parents and teachers speaking about AAC as if it is some sort of magic.
Autism Speaks, I want to say that making it about others views of what we do is part of what's wrong with this.
Autism Speaks, I want to say that you need to do better, and I want to say that doing so will require fundamental changes, not just surface paint.
And Autism Speaks, I want to say that I will keep saying these things, and that I and my Autistic brethren will keep typing and speaking.
Autism Speaks, it's time for YOU to listen, and to hear, and to answer. For real.

My Token Autistic Speech

Trigger Warning: I'm not 100% sure, someone tell me why I'm convinced it needs one.

If someone ever asks me to speak and it's clearly as a token... well, let's just say they might find this substituted for whatever presentation they approved at the last second. It's snarky, it's sarcastic, and it's clean enough to use. And FYI, if you want to use it? As long as you say at the end where it came from, you can use this verbatim. This is meant to be used.

First, I want to thank you for inviting me to speak here today as your Token Autistic. Today, I am going to be talking about how much of a success story I am. The idea behind this is to give you hope that some day, the child with autism may grow up to be as much of a success as I am, and may even get to be the Token Autistic at a conference like this one some day. There, they too will talk about how they couldn't do anything independently when they were kids and now they are successful and it's so wonderful. They won't tell you about the fact that they still dig their fingernails into their hands hard enough to leave marks, and they won't let you see them rocking. You will have taught them better, because their autism is something that they need to hide, to overcome. They will make the next generation of parents feel comfortable. The cycle will continue.
Or will it?
I have the same trappings of success you wish for your children, and you speak of how you would consider your child recovered if they had these same trappings. You want to know how I overcame my autism in order to do this.
I didn't.
I embraced it.
*******Insert personal relevant stories here*********
My first Autistic Obsession, my first special interest, my first perseveration, whatever you wish to call it, was math. I know, it's stereotypical, but it's true. I spent a lot of time doing math. I've been told that I watched college math lectures when I was very young. Maybe that's why calculus looked familiar when I took it in tenth grade. That's not the point. The point is that I won the individual chapter MathCounts competition twice, in seventh and eighth grade, and I came in sixth in the state in eighth grade as well. I was on the "A" team for my high school's math team every meet for the entirety of high school, and I went to the regional championships with my high school four times. This is the sort of thing that people like to call overcoming autism. It was no such thing. It was embracing autism. Mathematics was my Autistic obsession, and I was good at it. I brought fidget toys to meets. I wore the exact same outfit to every meet from seventh grade up through the most recent math competition I was in, Putnam my freshman year of college. I became known as Purple Dress Girl for my long sleeved ground length purple dress. For ARML, when I had to wear my team T-shirt, I wore the T-shirt over the long-sleeved purple dress... in Pennsylvania. In June. I brought my routines to my Autistic obsession. Embracing, not overcoming.
I played sports in high school. Specifically, I ran cross country, swam, and ran spring track. What these all have in common is that if I don't want to interact with people on any given day, I really don't have to. The last two years, I went for Ultimate in the spring, which did involve more interaction. That and lunch were often my only social interaction in the day- I saved my energy for them because I knew it was limited. I disengaged when I needed to so I could engage when I wanted to. Embracing, not overcoming.
I never learned to sit still and pay attention at the same time. I can't listen, take notes, and retain what I hear all at once. So I didn't push it. I knit in class. I sewed in class. I basically made a chainmail prom dress... in class. My chemistry teacher got a picture of it, since I spent nearly two years of her class making chainmail. I found ways to satisfy my need to stim and not disrupt the class. Embracing, not overcoming.
In college, I kept playing Ultimate. During practice one day, I lost speech. Yes, that happens sometimes, still. No, do not pity me for it. I neither want nor need your pity. I have what I need- AAC. At the end of practice, no one had really caught on to the fact that I had lost speech, but there had been plans made for some team members to go for dinner after. I wanted to be social. Speech wasn't working. I pulled out my iPad. No one even blinked. I used the tools I had so that I could do what I wanted to do, rather than trying to hide the fact that I am, in fact, Autistic. Embracing, not overcoming.
I have studied abroad on several occasions. I didn't get culture shock. If I already feel like a foreigner in my own country, is it really a shock to feel like a foreigner? I played my lack of culture shock for all it was worth, and I think I got the better immersion experience for it. Embracing, not overcoming.
*******End relevant stories here***********
I could go on. The point is, I didn't overcome autism. It's not even an idea that makes sense. I couldn't use stubbornness born in my brain to overcome the way my brain is wired.
I have lost count of how many parents, much like yourselves, have told me how inspiring I am, how they would consider their children cured if they could speak like me, if they could write like me. A cure is not the secret. I am by no means cured, and if you were somehow to offer me a cure, I would refuse it. This brain is what makes me who I am. I embraced it, and I found the best ways to work with it, not against it.
That's the secret.
Since I am not giving the presentation you expected, and since I can speak, at least at the moment, you probably think these things don't count. At least, that's what you'll tell me. So tell me this: If you think those ways of embracing my autism don't count, why are those among the traits you teach your children to suppress?
In case that bounced, here's a list of difficulties I have written in your language, to tell you that I really am Autistic.
I have what is very clearly selective mutism.
I can't sit still in class.
You see the posters of "proper listening" in your child's classroom? I can't do it. I would, legitimately, fail your child's kindergarten special ed class, today. I am not even joking. They would hold me back and I would be the adult who couldn't even pass kindergarten.
I have picked at my skin until it bled. Recently.
I've stood barefoot in the snow for the sensory input as a way to calm down. Last snowstorm.
A friend of mine has scars on his hands. From my fingernails.
My hiccups are so powerful they can knock me off my feet, still.
Dyspraxia, Dysgraphia, Hyperlexia, SPD, Hypergraphia, Alexithymia, Prosopagnosia, possibly ADHD.  Yeah, I've got a pile of things beyond "just" autism too.
Yes, dysgraphia and hypergraphia both. I got banned from handwriting my math homework (twice!) because of illegibility issues, but I can't NOT write.
I followed the wrong person around skiing for almost an hour thinking it was my dad. As in, I am actually face blind.
No, I don't look people in the eye. Faces are OK, eyes generally aren't.
I've melted down... alone... in a foreign country... on multiple occasions.
I've melted down and lost speech at sports practice... as a junior in college.
If my ultimate team wanted to make one of those "inspirational" videos about me and my participation on the team, the totally could. I would never give them permission, but I know exactly how they could do it and exactly what they would say.
I melt down from sensory overload on a semi-regular basis. Even when I don't melt down, the sensory overload is pretty obvious. Hands over the ears, whole body stiffening, eyes squeezed shut, not able to respond to what you ask me, rocking on my feet if I haven't curled up in a corner yet. Basically, all the reactions you're trying to teach your kids not to have.
I wasn't joking when I said I would fail if I were in your kid's special education kindergarten class. Or exaggerating. I survived mainstream kindergarten because they didn't think I was disabled and so I could get away with more. Also because mainstream kindergarten have me the chance to show at least some of my strengths.
That's what I'm going to close with. Shut up about the merely weird, spend some (but not too much!) time on the actually problematic, and go play to whatever strengths your kid has. And if you think they don't have any? That means you're missing them. It might not be a stereotypical autistic strength, and it might not be what you expect of a "spliter skill" or "perseveration," but there will be something. Play to it.

There is a Difference

Trigger Warning: Ableism, "cure" talk, reversing symptoms of autism/recovery

We should be aiming to empower both individuals with autism with the skills to cope in the world and non-autistic individuals to accommodate autistic differences, not to reverse the symptoms of autism.

That was the final sentence in ASAN's response to the study about some children seeming to "recover" from autism. (I presume they are quoting it from one of their referenced papers, since it's using person-first language and ASAN doesn't usually do that, but I'm honestly not checking that right now.)
Someone asked if there was any difference from outside besides just "semantics."
I could get into how semantics is word choices and word choices matter, but I've talked about words mattering. I've talked seven times about Autistic versus With Autism, and I've got another you haven't seen about capitalizing the A in Autistic. Words mean things. Semantics actually matter.
But that's not the point.

The point is that there are huge concrete differences between empowering Autistic people with coping skills and trying to reverse symptoms or traits of autism.

When you are trying to reverse the symptoms, oral speech at all times is key, and confiscating AAC devices in an attempt to elicit speech is acceptable on the off chance that it might work. (It won't. In fact, AAC devices seem to help people learn oral speech.)
When you are trying to provide coping strategies, any sort of AAC is a huge gain, and oral speech, while certainly a useful skill, does not have to be the be-all end-all of communication. Typing is fine. PECS is fine. A Dynavox is fine. Proloquo2Go is fine. An Autistic adult who can usually speak typing when under stress is a coping mechanism, not a behavior to eliminate.

When you are trying to reverse the symptoms of autism, preventing stimming is a goal. The events of "Quiet Hands" may seem acceptable. (They aren't, and they never were.)
When you are trying to help a person learn coping strategies, you suggest fidget toys they may be able to use in class. You might even let them sew in class (that's what some teachers did for me.)

When you are trying to reverse the symptoms of autism, forcing a person to make eye contact is a good idea.
When you are trying to help a person learn coping mechanisms, you mention tricks for "faking" eye contact (nose, forehead) if eye contact even comes up. It might not, because if eye contact is something that we need to think about in order to do it, it's pretty much a thing that's done for other people's benefit, not ours.

When you are trying to reverse the symptoms, bullying about Autistic traits is just another motivator to "fix" this person.
When you are trying to provide coping strategies, it is sign that something is wrong... in how the bullies are acting. Bullying is something to be stopped, and the harm is can and does cause is recognized.

When you are trying to reverse the symptoms, you might care about the cause. The cause might tell you the cure.
When you are trying to provide coping mechanisms? Why an Autistic person is Autistic really doesn't matter. It's not going to help us cope, so why do we care? [Besides curiosity, I mean. Which as a sciency person... yeah curiosity does seem pretty legit to me, but I can get that it's not relevant to this.]

When you are trying to reverse the symptoms, social skills courses that teach us to be silent, that teach us to engage but not to disengage, are considered OK because it makes us act more normal.
When you are trying to help us learn to cope, a social skills course would look vastly different, in ways that could get posts all to themselves. Suffice it to say that engaging and disengaging, following and setting boundaries, accepting and rejecting invitations all need to be covered. And that a lot of it would actually be teaching the abled kids how to be decent, not teaching us how to pass.

There is a difference. From inside, it is between learning to work with your brain as opposed to working to defeat your brain and pretend it is not wired the way that it is. From outside, it is between trying to make a person appear more neurotypical and trying to help a person work with the skills they have and the skills they can learn as well as they can. If you don't get that difference, if you think it is simply semantics, you may well be doing the first and mistaking it for the second. The first, trying to reverse the symptoms? It's kind of the default expectation of most treatment/therapy/education right now.

Be careful, because there is a difference. It is, at a very real and visceral level, the difference between holding a person's hands down in tacky glue as they cry and helping them find a way to stim and do other things at the same time. Or even realizing that we can stim and learn at the same time, that "table-ready" and "ready to learn" are not the same, that neither is prerequisite to the other.

Red Flags

Trigger warning: Discussions of silencing, presumptions of incompetence

Many autism organizations claim to be doing good. Many of them even think they are.
Unfortunately, many of them have some really harmful ideas about autism at the core of what they are advocating for, and that is a huge problem. It's those harmful basic ideas that lead to things like silencing of Autistic people on the basis of them being able to communicate, pushing compliance as the highest goal for Autistic people, presumptions of incompetence, and those sorts of things. It's a problem.
And it can be sneaky, very sneaky. Sometimes you go in thinking you can change them and instead they change you. Sometimes you don't realize what's at the bottom of it and therefore don't even know that an organization is problematic until you have absorbed many of their problematic ideas and now find yourself faced with the challenge of purging those ideas in order to help you or your child navigate the world without having to pretend to be something they aren't.
To help you avoid the second of these, here is a list of red flags for organizations. If you see these, be very wary of whatever organization is putting them out because they probably have more problematic stuff going on.

• Puzzle pieces, especially the same piece Autism Speaks uses. It reinforces the idea that autism is mysterious and puzzling, which tends to go with presumptions of incompetence. 
• Puzzles with missing pieces- the autistic person is the missing piece? Understanding of autism is the missing piece? I dunno, something is missing a piece and it's usually us, so it falls in with the Autistic people are somehow broken.
• No Autistic writers on their blogs. Even if it's writers with autism who are not self-loathing people with autism, there is a chance that they are OK. But if no one writing for them is Autistic, you need to think about why. Either they are so problematic that no one Autistic will go near them or they don't want to hear from Autistics. Very few Autistic writers for their articles/blogs is a similar issue.
• Person-first crusading. If they refer to specific Autistics who have expressed a desire to be referred to as Autistics or Autistic people as people with autism, run. They have no respect for self-determination if they can't even get that one right. (Calling folks "people with autism" if they do not have a preference is OK, and you should respect the preference of those who prefer to call themselves "people with autism.)
• Mental age. It's creepy, it's nearly useless, it's used as a tool to deny self-determination and presume incompetence, and if you've got a kid who doesn't speak, this one is "run for it" level bad because you of all people need to not go there. It's toxic for anyone, but if you are directly responsible for someone who does not speak, you really need to stay away from mental age.
• Any reference to fighting/beating autism. Even if they recognize that autism can't be cured, if they're talking about beating/overcoming it, that means they see autism as something that is damaged and needs fixing. Problem, much?
• Cure/recovery as a goal- autism as broken, medical model.
• Cure/recovery as something possible- BIOMED ALERT. This group almost certainly thinks that abusing a kid in order to make them not be autistic anymore is acceptable. Run for it, seriously.
• Association with Autism Speaks- they are problematic, big time, and they are very good at corrupting others with their problematicness. Even pro-neurodiversity Autistics: take a look at what kinds of things Alex Plank used to write, then at what he writes now.
• Association with Generation Rescue- um, yeah. Biomed/MMS/chelation/inviting Andrew Wakefield to present at their conferences. Not good. AutismOne is the Generation Rescue conference, where they promoted an autism treatment that, scientifically speaking, is bleach up the butt. (That's what MMS is, by the way.)
• Prominently featuring individual testimonials, particularly those of parents who think their kids are now recovered from autism, is not a good sign. It is a sign that people don't understand how autism or science works. They probably also don't understand statistics. If they do understand any of the above, then they are counting on you not understanding them.
• This requires a bit more work, but if all the research they have is written by their own doctors and/or not peer reviewed, citing things that only tangentially fail to refute what they say it supports, it's probably quackery. 
• "Proven to work" is also a quackery sign. Science works with "Does better than placebo to X degree of certainty," not with absolutes. Placebo is needed because placebo effect and because autistic people develop with time. Funny how that works.

There are, of course, going to be other red flags, but these are some of the big ones. Some of them are sufficiently bad that my advice is to run for it when you see them. Some of them you might be able to engage with, but be careful. My personal policy? If your Facebook page likes Autism Speaks, Generation Rescue, or obvious close affiliates, Yes, That Too isn't going to like your page. Most of these red flags are enough that Yes, That Too won't like your page.

Politics of Parent-Run Autism Groups

Even when all the parents running an autism group are good parents of autistic children, are good allies, there is still a very different feel to the group and a very different political structure when it is run by parents than when it is run by Autistic people. Autistic-run groups with parents in them run as Autistic groups, usually (sometimes the parents drag it more towards parent groups,) and parent-run groups with Autistic people in them run as parent groups (the Autistic people tend to get bullied, derailed, and silenced on the few threads they try to run Autistically.)

In an Autistic group, questions are more likely directed as "What worked for you?" as opposed to "What works?" or "What works for your child?" People seem more likely to be talking about stim toys. The focus is more on issues that Autistic adults face, since Autistic-run groups have mostly adults and some teens. Autistic-run groups also tend to have much lower opinions of, well, almost every autism therapy ever invented. Sometimes, the lowered opinion is the awareness that it can be done badly, depending on the goals of the therapy and who is choosing the goals. Sometimes, it is based in knowledge that the whole idea is fundamentally flawed, like for therapies that aim to teach communication or life skills but measure success by compliance.

In a parent-run group, no matter how many people in the group actually are Autistic, questions are usually directed at parents. When Autistic people speak up about their experience, while there are exceptions  there are four main categories of reaction:

1. We are Universal Translators - they assume that what we think might be going on is now exactly what is going on, even if it really isn't. This falls under "walking zoo exhibit", which is the one where people think our sole purpose is explaining our strangeness to the world, often to help translate their children's strangeness. We do have lives, and we are not the same people as your children. We have similar problems (often more similar than you realize, which leads into the next reaction.)
2. Not Like My Child. Basically, the fact that all they are seeing is our typing and the effects of having a much longer life in which to grow up and come up with coping mechanisms (and also the fact that some of us did not get put through the therapies that teach learned helplessness, meaning we are much more able to actually communicate what is going on and what is OK and what is not) comes through and hides the ways in which we are very much like their autistic children, or at least that we were. Autistic people grow up, and we're different as adults than we were as kids. The same holds true for all people, but it often needs to be restated with disabled people.
3. Don't Really Understand Autism because Autism Impairs Judgement. Autism experts do that one on a fairly regular basis. The autism expert from Ibby's Loud Hands Project essay (you should get the anthology if you can, by the way) did that. I thankfully haven't gotten much of this one, but it's a hard one to deal with. It's a catch-22, in many ways, in that people who do this one put every Autistic into either 2 or 3.
4. As If We Didn't Speak. Basically, they keep talking or chatting as if we never said anything. The reason can be 2 or 3, usually, but it's a method of ignoring what we say, of silencing us, and it is one of the hardest to get through to because they often won't even read what we write, simply skipping over it. 

All of these are forms of silencing, though the Universal Translator has usually struck me as the one where you have the most hope of getting education through and helping the kid. It might not do the parents much good, but I am often willing to settle for helping the kids, which I can sometimes do when seen as a Universal Translator. It still silences many of the things that need to be said, though.

It ignores the diversity among Autistic people, and it ignores the fact that we grow up to be more than just translators for the next generation. It ignores our outside lives. It is a form of silencing, and it is one of the more insidious, partially because of the fact that it it harder to see that it is silencing and partially because it is a half loaf that many of us will take in order to help the autistic kids who we are theoretically the translators for.

Those things don't happen so much when Autistic people are in charge. Parents may not be quite as comfortable, but this really isn't about the comfort of allies. Spaces where Autistic people are in charge are important, and spaces where parents are in charge can't be as safe for us. They can't teach parents as much either, but that's not entirely the point. (It's still important, though, because helping the parents understand better often means they can help their kids better.)

I updated this post a bit on January 24, 2014 (may vary by your time zone) and added it to the Down Wit Dat January T-21 Blog Hop. I'm not familiar with the way politics go in groups for other disabilities, but will entirely fail to be surprised if this applies to other disabilities as well.

I Hear You!

I hear you! I hear you!
I know what you say.
You say I am useless,
That I can not belong.
I'm not like the "real people."
I don't speak. I have nothing to say.
Not that you'd hear if I did.

I hear you! I hear you!
Though I wish I could not.
Each word is a knife through my heart.
I'm broken, I'm tragic.
A car accident.
In hushed tones you whisper,
You assume I don't know.

But I listen! I listen!
I listen all day.
It's all that I have, me with nothing to say.
Not sure how to tell you
Yes, yes, I am here.
But I am, I can hear you,
And I know what you say.

Victims, but not of Autism

Trigger Warning: Abuse, neglect, tragedy/victim model of autism

In TIME, recently, they called siblings  "Autism's Invisible Victims." Of course, I have to take issue with the idea that siblings are somehow invisible. Siblings are heard, just as parents are- over the voices of the actual autistic people. Siblings are heard, not studied, to our studied and not heard. Read any article about autism in a newspaper, in a magazine. How often do we hear about the tragedy of being related to us, how difficult it is to be related to us, what life is like for our parents, our siblings, our false friends who are seen as saints for simply tolerating us? How often do we hear from us?
No, the siblings of autistic people are not an invisible group. Their wants and needs are far more visible than ours.
And they are not victims of autism. Autism does not victimize unless an autistic person is victimizing someone, which, yes, it's possible, and no, it's not common. Usually we are the victims of others attempts to enforce normalcy and conformity, not the victimizers. The statistics agree here- like other people with disabilities, autistic people are victims far more than we are perpetrators for abuse, for bullying, for violent crime. We are disproportionately victims, and we are disproportionately not the ones who did the deed. Even we, however, are not victims of autism. We are victims of a society not made for us.
And our siblings? Well, in many cases they are not victims at all, though sometimes they are, in fact, victims. Not of autism, but victims nonetheless. They are victims of society, who will punish you for even being connected to someone who is different. They are victims of their parents, who put all their "normal" dreams on the backs of the "normal" sibling. They are victims of their parents again when everything that their autistic sibling does is blamed on autism, even when autism has nothing to do with it, creating resentment of their sibling, resentment and fear both of autism. They are victims of their peers when they are forced to choose between taking a stand for their sibling and taking likely social repercussions (being the new target of the bullies, perhaps) or having the victimization of their sibling (also not by autism) continue and the resulting losses of self respect, quality of relationship with their sibling, or both. They can be victims of the fact that their parents don't understand balance (autistic kids need time to just be kids, and should not be in therapy all the time, so there really, truly, actually should be time for the neurotypical kids too.) They can even be victims of all the "autism diets" that don't actually cure autism, if the parents don't have time to cook for two different diets and the autistic kid is on one or if the parents think it will prevent them from becoming autistic. Sometimes they can be victims of no one noticing that they are autistic too because all the attention is on one sibling. Look at all these things a sibling can be a victim of when they have an autistic sibling. Look at how none of these things are cases of being victims of autism. They are all cases of being victims of other people's reactions to autism, and not of other people's correct reactions either.
Siblings of autistic people can be victims, often are victims. However, they are not invisible, and they are no more victims of autism than the autistic people are, that is to say, they are not victims of autism.
Put the blame where it belongs. Autism isn't that place.