Age Appropriate

Age appropriate is one of those phrases I've got a complicated relationship with.

On the one hand, I'm an educator (I teach math both online and offline, working with students from about 4th grade through college. I've had 8-9 year old students and I've had students older than me. Plenty of expectations I have for my college students are not age appropriate for my 8-9 year old students. I'm not going to expect 8 and 9 (or really 10  or 11) year old students to sit in one place and focus for 90 minutes straight with little to no humor. (I don't think it's a great idea with the college students either, but I think they are more likely to be capable of it.)

Because of that, I think the concept of age appropriateness can be useful for defending children from unreasonable expectations.

On another hand, I'm Autistic, and I interact with other Autistic people. I know how "age appropriate" can be used as a weapon against us, and there are a couple ways this happens.

Way the first: The concept of age appropriate is used to control what we are "allowed" to show interest in. That is, when an autistic teen or adult shows interest in something aimed at younger children, we might get "redirected" to a more "age appropriate" interest, which is one more piece of the pattern where we're not really allowed to like things, at least not safely. (Other pieces of that pattern are having everything we admit to liking used as a reward for acting more neurotypical or taken away when we act autistic/do something the staff doesn't like.)

This can also go in the other direction, where a person is told they aren't old enough for whatever they're interested in. (I had a teacher who was very concerned that I had the math interest and ability to be using exponents and roots in first grade, and there were attempts by the school to get me to stop doing math that was too advanced to be "age appropriate." I don't think this direction (alone, at least) is as common as the other, but it exists.

Way the second: The concept of age appropriate is used to "show" that we have a "mental age" corresponding to whatever interest of ours has the youngest target audience. Here, the interest of the teen or adult in the (usually) "younger" topic is used as evidence against their competence. Rather than being a teen or adult with an interest (like how the graduate supervisor at the technology help desk really liked My Little Pony and was also known to be a graduate student who knew how to solve computer and internet problems), they are treated as children in a teen or adults body. It's a pretty gross concept. (Even if you're working with the tools typical of a younger person, you've got more experience working with them -- see this crayon art as an example!)

These two problems get combined as well. There are two steps here. First, an interest that's more common among younger people is used as evidence of "mental age." Then, this arbitrary mental age/developmental level is used to restrict what else the person is allowed to show interest in, or what else they are exposed to. An example of this would be a student who enjoys Blues Clues not getting access to the general curriculum for their age, because someone who likes Blues Clues must actually be on level with a pre-schoooler.  I use Blues Clues as my example because I liked the show well into middle school, and no that did not make me secretly a five year old in a middle schooler's body. This also gets used as justification for not providing education on sexual or reproductive topics, since an actual 3-5 year old shouldn't need to know that stuff yet.

The "ages" chosen for this purpose are arbitrary. Remember that interests have ranges of ages where they are more common, and remember that a person can have multiple interests, with different intended audiences between them -- whichever age is most convenient to use can probably be "justified" in this manner. Besides, "uneven" development, in comparison to the order skills and interests usually develop for neurotypical people, is pretty much a hallmark of autism. I haven't had a single coherent (neuronormative!) developmental level since I was about 6 months old, and I don't think that's unusual! That means we're essentially using a trait of autistic development, that we don't follow the same paths or patterns neurotypical people do, in order to show that we're actually small children. (Ever notice that they don't do this with the (neuronormatively) most advanced of our skills? Anyone argue I was really older because I could do more advanced mathematics? Nope!)

But back to something like the first hand, the idea of things being age appropriate or not can be used as a defense against unreasonable expectations for disabled kids, and as a defense against inappropriate therapies. For example, intensive behavioral intervention (IBI) and things based on applied behavioral analysis (ABA) often expect 40 hours a week of just the one therapy out of kids who are 2-5 years old. That's not age appropriate. Sometimes, pointing out that it's not age appropriate to expect any kid that young to manage such a schedule gets people to think about their expectations.

When I hear age appropriate in the context of autism or general disability, I don't expect that it's going to be used as a defense against ableism. Usually it's going to be the ableism (control of interests, evidence of mental age, and combinations of the two.) But I think it's important to remember that (and how) we can turn the concept around to defend ourselves from the ableist nonsense it usually justifies. 

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"

Wheeling Around as an Outpatient Adult

Trigger Warning: Injury, presumptions of incompetence, hospitals

So, this is the fourth hospital story that wound up happening after I started writing about hospital stories. This is about my knee. I'm putting it up today because I want to link it in today's post for We Are Like Your Child and that means it needs to exist.
I play Ultimate. Depending on how much of my blog you read, you might have already known that.
I'm almost certainly dyspraxic. Given statistics on how many autistic people have some sort of movement issue, that's not exactly shocking.
I have really high pain tolerance. That's what the post on We Are Like Your Child is really about (That's a link.) It's a pretty common thing in autistic people: I remember this one parent saying I wasn't like their kid because their kid didn't realize their arm was broken. Yeah, um, I've had 3-6 broken bones in my life, none of which made it onto my medical records for the same reason your kid didn't know their arm was broken. 2-3 were in legs/feet, and I was walking around on them. One of them I directly stated wasn't broken because it "doesn't hurt enough to be broken." (That was my nose, not my leg.)
Those are the things that added up for me to have this story, I think.
I assume I did this playing Ultimate. Towards the end of the season, finals and such made participation decrease, so we wound up only having 7-9 women (well, people whose IDs for school say they are anyways- I'm androgyne.) For a sport that plays 7 people on the field at a time, that means we don't have a lot of subs, and sometimes we have none. I probably did this one of the times that we had none, which can become effectively the case when people get injured (only injured people get to sit when that happens.)
As for what I did, we're still not entirely sure. I may have focally fractured the knee. I may have some other kind of fractured the knee. I may have done something other than a tear to the cartilage- it was apparently a little wonky. I may have done a "heck if we know!" Well, we're pretty sure I did that, actually. Because whatever I did, I did it at least 2 months before I got it checked out. Kind of like the broken foot got walked on for a month before it got checked out. I recommend against doing that if you want people to be able to figure out what kind of injury you have, FYI. It confuses them, especially with injuries where you're expected to be unable to walk.
I went to the hospital. Since we weren't sure what I had and we were worried it may have been a meniscal tear, I got a wheelchair. (The hospital has a large enough pile of them that "one of the possible injuries is bad to walk on" gets you a chair. Smart of them.) People kept asking if I needed help, but as an outpatient adult with a sports injury (results of passing out doesn't get called sports injuries, even if you passed out playing sports, it seems) I got listened to when I said "No, I've got it." That was different from when I was in the hospital with the broken leg no one found. People were still really confused by the fact that I wanted to wheel myself, and they looked at me funny, but they listened when I said "Don't touch the chair; I've got it."
They didn't listen so much when I told them that pain scales were essentially useless for me. "I dunno, worse than the broken foot was just sitting there but not as bad as it was hiking? Where should a broken foot go on the scale, when I'm not doing anything on it?" Yeah. They didn't answer that. Or where a broken foot should go when I'm hiking on it. Or where a broken nose should go. Or, well, anything except that paretenintis is considered a 10. Which, um, size of blocks? Not all pain necessarily of same type? That's not enough for me to use their scale. It's just not. (Is "no pain"a 1 or a 0? WHY WOULD I BE HERE IF NO PAIN?!)
And they tried to record my "I DO NOT UNDERSTAND YOUR SCALE YOU NEED TO EXPLAIN IT WELL ENOUGH THAT I CAN USE IT NO THE FACIAL EXPRESSION THING DOESN'T HELP I CAN'T READ THOSE ARRRRGGGGHHHH YOU ARE NOT MAKING ANY EFFORT TO MAKE THIS COGNITIVELY ACCESSIBLE TO ME" as "no pain." No. I already told them two things it was between. I don't know how they could come up with no pain as a possible answer when they already knew it was worse than a broken foot. Broken feet hurt, folks. Just FYI. That's a thing. Broken bones hurting, I mean: that's kind of expected. So their "ugh just put down a number" reaction, which is completely unhelpful, was for a number that was kind of impossible.
Yeah. I think they expect everyone to be neurotypical. I also think that even if they never figured out exactly how I am neurodivergent (I'm Autistic, plus alexthymic and presumably dyspraxic, Autistic is the only one that's a cultural identity and therefore must be capitalized identity-first when referring to me,) they kind of got that I'm not neurotypical. I think neurotypical adults are at least capable of the "just make something up" thing. I sometimes can, if I have time to prepare for the fact that I'm just making something up and it's not actually important that I be accurate. Given the status doctors assign to these pain scales, I think it's important in context. (Seriously, doesn't "I'm using the wheelchair because I can't trust my own sensations of pain to tell me if I have broken bones or a meniscal tear or other major injuries, but walking hurts and that's a bad sign" kind of make it clear that these scales might not work right? But noooooo, "everyone" is able to do this, just give a number. WHAT PART OF I CAN'T DON'T THEY UNDERSTAND?!
I wasn't able to get them to just leave the thing blank with a note about "the patient is unable to use these" or something, unfortunately. Because I can't. But my mom was able to talk them into using an 8 instead of a "no pain" because she knows me and that if I'm consciously aware of the pain, it's got to be at least a 6 or 7 by typical standards. Which, um, I think is a sign of the scale being messed up? Just a bit? If my 6-7 is the same awareness of pain level as most folks 1-2? Yeah, that's a thing that needs changed. Not sure what it needs changed to, being not a doctor, but having "pain scales are cognitively inaccessible" or something like it as an option to get around the thing might be a good start...

For Ashley, And Those Like Her

Trigger Warning: Mentions of abuse, murder, neglect of people with disabilities, presumptions of incompetence.

It wasn't an isolated incident when a nonspeaking woman was left in a hot car while her caretaker gambled. It wasn't an isolated incident when a court found that keeping autistic children in a cage wasn't illegal. It wasn't an isolated incident any of the times a person with a disability was neglected or abused or murdered by a parent, by a caretaker, by the very people who should be protecting us from those things. And what happened to Ashley isn't an isolated incident either.
She was beaten up, rather badly. Seven people were charged. They are out on bail. Some of those charged are living with Ashley's grandmother. There is an ongoing investigation. Details. If we get too caught up in them (you can find them in either of these two Facebook groups,) we can lose sight of two very important things, the two things we need to be focusing on.
In the big picture, we need to treat this like the broad issue it is and find ways to stop it. In Ashley's specific case, we need to make sure that she is safe and happy and that her rights are being respected.
When disabled people are abused, it is often ignored. Ashley's case has not been ignored as completely as many cases are- we know about it, and arrests were made. But it is often ignored. The broad change we need is that these cases are not ignored. The small scale change is that this time, there is an active investigation, this time it is not ignored. This is important.
When autistic people do not have oral speech, they are often assumed to be incapable of any communication, to have the cognitive ability of a much younger person. The broad change needed is presumption of competence and making AAC part of everyone's plans. The small change needed is finding a way that Ashley can communicate in ways others understand. If that means we learn her language, if that means we remember that behavior is communication, if that means that she gets an AAC device, it needs to happen. (I think all these things should happen, starting all of them now.)
When incompetence is presumed, rights are lost. Ashley is 22, but she is not allowed to choose who she lives with because she is considered a minor. Her guardians can make those decisions for her. Legally speaking, abuse by a guardian seems to follow similar paths to child abuse by a parent, so that needs reforming too. On the broader scale, it needs to be easier for anyone in any abusive relationship to get out, even and perhaps especially when the abuser is a guardian or is being protected by the guardian. In Ashley's case, she needs to be protected from the people who abused her and those who allowed it. Remember, it is likely that she was also neglected before her case came to light. There are so few pictures of her smiling and happy before, which is, at the least, a sign of problematic attitudes towards her.
In the big picture, the alternative to living with parents is often assumed to be an institution, a residential placement, a group home. (Different names, different trappings, similar ideas.) Incompetence is assumed, control is everywhere. This needs to change. There need to be more options than parents who may be abusive and residential placements that are designed to be manipulative and controlling by their very nature. In the smaller picture, Amy Sequenzia lives with a friend. In the small picture, living with an employer who is also a friend is what Jenny wanted. In the smaller picture, Ashley should be allowed this sort of option- living with a friend who cares, who will presume competence. In the bigger picture, that sort of thing should be on the list of options that everyone hears about.
For Ashley, the smaller picture things, the things specific to her case, have to happen. For those like her, we need to change the big picture. The ideas that make this sort of abuse seem justified or make people think of these as isolated incidents need to change. No one else should have to go through what Ashley is going through. 
These aren't rare and isolated incidents. They should be, but we can't treat them as such until they are.
This is about Ashley, and this is about everyone like her, and it is about everyone who could be like her.

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.

Not Children

Trigger Warning: Infantilization of people with disabilities

If we recognized that children are people, that children have thoughts and feelings and needs, that in any conversation about what should be done about a child (a sign that we're already looking at this wrong when we're doing something about a person...) the goals the child has actually matter, that there is such a thing as child abuse, that there are limits on what is and is not acceptable to do to a child all need to be thought about before the convenience of the adults, the whole mental age thing wouldn't get one whit more accurate. It would probably get less creepy, since being seen like a child is seen wouldn't imply the same loss of control over one's own life that it does now, but it would be just as inaccurate as it ever was.
A developmentally disabled twenty-year old might not be able to communicate her emotions in speech any better than the kindergardener next door, but that doesn't make her somehow equivalent to a kindergardener. There's still fourteen or fifteen years of life experience, fourteen or fifteen years of maturity, between the two. Even if there are problems communicating these differences, they are still there. We didn't somehow stop developing emotionally when we were five or six and just get stuck there.
We don't somehow have only the intelligence of a toddler, and a toddler is not somehow unable to comprehend what happens around them either!
We're not somehow children trapped in adult bodies, not any more than you are. (Yeah, I know- sometimes you might feel like you didn't really mature and that what on earth are you doing in the adult world you're not ready! We might have that experience too, but it's not evidence that we actually are still kids any more than it is evidence that you really are still a kid. Be consistent, here.)
When I can't speak, I don't suddenly become five months old again. (Yes, I was talking at six months. It happens.) When you get laryngitis and can't talk for a few days, even, no one thinks that you are whatever age you learned to talk again inside. No one considers you an infant for it. When I lose speech, it's not based on a sore throat, but the effect on parts of my thinking other than "make the words I am thinking actually come out using my vocal cords and mouth" are unaffected. (They might have been affected by whatever caused me to lose speech... but generally, once my brain gives up on that I've got enough energy to keep everything else running normally. As far as my other mental processes go, I'm probably better off losing speech than not, since the energy has to come from somewhere and if I'm at risk of losing speech, I'm already pretty overloaded and something has got to go.) The point is, the rest of my mind is working fine. The reasons may be very different, but the effects aren't as different from laryngitis as you might expect. Consistency says that the reactions to each shouldn't be so different, then. Niether somehow reflects on the "mental age" of the person it happens to. It doesn't work that way when the reason for the inability to speak is a motor control issue, either. It's still not a reflection of mental age. It never was, and it never will be. People just sometimes act like it is, and that's wrong, both factually and morally.
If we treated children like autonomous beings who just needed a little more help, it might not be as creepy to make this sort of argument, and there might not be as much of a moral issue with the whole concept, but it would still be factually inaccurate, and I'm pretty sure it would still need to go. Those added factors just make it worse.