Monday, February 13, 2017

Empatica Embrace review, also a moving announcement sort of

 This is the first thing I've written here in a while. For Reasons (like needing to eat) I have made the decision to monetize, while still allowing access to the free content that is why people followed me to begin with. To support me & my writing, please visit My Patreon
 
I kickstarted the Empatica Embrace, a watch that may be able to reduce SUDEP (sudden unexpected death in epilepsy) by detecting seizures via galvanic skin response + motion detection. With a bluetooth connection to a cell phone, it will also alert designated people about a seizure.
 
In theory this is awesome right? The other data tracking it offers (sleep, exercise/activity) are also pretty cool, and the ability to add seizures that it missed? Sign me up. I was super excited.
 
Except...not so much. First, it arrived over 2 months late. It took over a day to fully charge, rather than the indicated two hours, and this did not speed up until I ignored the device entirely for over a month. Finally it charges up faster than it runs down, but it took some time.
 
Data collection is also iffy. It can't really tell anxiety from physical activity, and it has false alarmed at panic attacks and at bumpy roads. It also decided that 12% of its memory will never make it into my account ever. That's just swell.
To add to the data differentiation issue--the bluetooth feature is terrible. It'll lose connection for no reason a hundred times a day. I have to reset the phone and the bluetooth multiple times each day and I have had to reinstall the Alert app over a dozen times. Since it decided to no longer upload all the information, there's a pretty strong risk of it not recording all the relevant data, as it won't just overwrite that 12%. It's silly that it won't talk to my phone when said phone is in my pocket, but it's completely absurd that they can't communicate when the watch is sitting on top of the phone. 
 
The one time it does consistently talk to my phone is when it is time for the false alarm going over the bridge to school. Every day it goes off, every day I mark it false, and the next day it does the same thing. Supposedly if I tap the watch face it will register that the alarm is false instead of sending the call, but that does not seem to be true in reality.
 
Oh and how very alarming that call and text tend to be! They are not customizeable. "K needs your help" is what it says and what it sends. That's an alarming thing to get, even when you know it is probably a false alarm because it's time for me to head to school. Given my way it would just say "This is an alert from K's embrace" or something of that nature, but they won't do customizeable messages.
 
Less irritating than all of this (but a big issue when I recieved the device, everything else is just so much more), and yet still a problem: the device appears to be designed for an average sized adult wrist, although Empatica has been marketing the device to parents of epileptic children. There is no way this is going to properly fit your average child. The face takes up the entirety of the broad side of my wrist. The elastic strap does go tight enough, but that will not bend the rigid part around. Empatica suggests ankle wear, and I did try this, but the elastic strap cuts into the Achille's tendon and this is really uncomfortable and sucks and I couldn't deal with it, nor do I expect most children could. 
 
Finally, support for the Embrace is truly abysmal. They know my issues with the device, before you ask--I've tried for months to get a return and refund. They'll helpfully condescendingly tell you to do the same thing you just did, but there's no way to exchange a malfunctioning device or return one that doesn't work at all. 
 
In pros it does keep good time, if you can read analog. And I guess it's sort of cyberpunk looking if you are into that. 
 
I'd recommend against wasting your money.

Tuesday, November 1, 2016

Autistics speaking day-things you don't want to hear

The title of this is misleading. This isn't just things you don't want to hear--it's things you don't want to hear about things you don't want to hear, and about leaving me alone to speak truth to power while you wait out the storm inside and recycle what I said six months later, or put a richer accent on it, or both.

Specifically, I am going to tell you that which I have told you multiple times. About my own vincibility and vulnerability. Maybe if I say it on Autistics Speaking Day you will make a pretense at listening. Gods know you never have before.

I really don't know what gave you the impression I'm impervious to the verbal abuse heaped on me as I say things parents don't want to hear and you nod and hide. Is it that I've been there before? That's crap and we all know it. Not a single one of you would think that I developed an immunity to bleeding because I've been cut before.

Wait just kidding. So many of you leave me to weather the physical threats and attacks alone as well. Apparently you do think I no longer bleed! Neato! I haven't. I would not have scars if I had. I still bleed.

So, autistic community, I need you to remember I have human psychology and physiology. I don't draw fire off you for funsies. I don't do it because it has no effect on me. It digs into the C-PTSD wounds that you know about and conveniently ignore. I do it so that the next generation will have it better. I am a Gryffindor. I am good, not necessarily nice, and I am brave to my own detriment. Stop making me be brave alone. I've lost my faith in most of you, for using me.

I'm really over being the meat shield for dozens and dozens of people, many of whom have more resources than me. You are hiding from physical, not just emotional, attacks behind a 5'4" woman with adrenal insufficiency. I need you to think about the implications of that. You're willing to knowingly put me in fatal danger to keep yourself relatively safe.

You steal my words.
You steal my ideas.
You splain tactics that have failed a decade ago like they're new.
And you hide behind me from things that will literally kill me far more easily than they will kill you.

That's some bullshit, autistic community.

Parents, you need to fix your house in this regard too. I see you sitting there while your cohort abuses us. Must be nice to be able to hide while people already hurting fight for your kids & you can basically stay out of it. It must be nice to ignore that this will never not be raw for so many of the Warriors.

Don't think I don't notice you using my and other autistics for our activism credentials and then holding to the parent supremacy line the moment things get heated. Don't think I don't see it.

Maybe you're afraid. That's a luxury not afforded to all of us. It must be nice to be allowed normal human vulnerabilities.

I wouldn't know. I've been assumed too used to it for it to matter since before I can remember. Others decided I don't have those anymore. And y'all use that excuse too.

I'm not as strong as you lie to yourselves & pretend I am. I value justice more than I value my own safety, as do many people who've been where I have. Taking advantage of that is still cowardly. You need to be better.

Saturday, April 30, 2016

Don't call me "talented"-BADD adjacent post

This post wasn't exactly written specifically for BADD like my posts for it usually are, but there's an aspect of ableism the phenomenon I'm writing about. There's also a big pile of ableism in the life experiences that lead to my reaction to being cast as "talented". So this is BADD adjacent, bc of timing & because a lot of disabled people relate, based on my small contacts.

Please don't cast me as "talented" or "a natural". Unless you're talking about hyper mobility or pattern recognition, I'm probably not, and it really freaks me out.

The first reason this freaks me out is easy to comprehend: it erases my effort. Hard work beats talent because hard work shows up. I'm probably not "a natural"; my ass is showing up. That deserves recognition, dammit. I'm way more impressed with someone who puts in the hours than someone who just magically can do things, why are you not?

And then you get into the muddle of confusing, "wow you have issues" things. Maybe I do have issues. But that doesn't make this less valid. You don't have to understand it for it to be real, and these reasons were directly caused by other people. So go roll your eyes at them.

The first bit is a common twice exceptional kid thing, I think. I need to be allowed to be not good at things. In my youth (& let's face it, to this day) my worth was determined but what I could do--especially that which came naturally. Things that didn't were considered lost causes. Apparently autistic kids & kids considered smart are born with a full suite of abilities waiting to be untapped, and if it doesn't happen on the first try it is never going to happen. I internalized this attitude before I knew that what I was surrounded with wasn't actually objectively factual. I've had to fight every breath for the right to do things I had to work for (ask me about gymnastics sometime...), and I had no support in learning how to do that work. Instead of "try again!" cheerleaders I had a chorus of voices telling me that there's so much I am good at, why not focus on that? Why do you care about these things that are hard?

It's important for me to do things that are hard. I'm just now starting to get comfortable with the idea that things are hard and I have a ceiling in things and that's ok. Other people also need to be comfortable with this, or at least keep their discomfort to themselves. This is hard-won. I am not good at taking failure gracefully. Don't sabotage my progress.

There's another factor too. I brushed lightly on it in my Dream Student/Nightmare Student post last summer. If I am given room to fail or have to work hard without it being a big production, without "wow I expected more of you" or disappointment or "maybe you should stop doing the thing" or what have you, I do a lot better. A couple of the arenas that people mistake me for a natural in are adjacent to things I've got much experience in coupled with an environment where no one expects perfection right away. Where it's okay to not be a natural. Where it's acceptable that if things change I can't actually adapt quickly. If you put me in an environment that demands immediate excellence, rather than being pleased with it, then I am a mess. The weight of expectations leads to anxiety & actively impedes participating in the thing. Even if it's patterns. Even if it's not getting dizzy. Even if it's code breaking.

Too often the twice exceptional kid gets told she is "so smart" and that is presented as her defining feature and her redeeming value. Anything autistic people in particular are good at gets written off as a splinter skill or savant skill. We're weirdly presumed incapable of learning, so everything we know we must have inherent aptitude for. We are not able to persevere, merely perseverate.

Give us credit for our work. For trying. For progress. For doing things even though they are hard.

Lots of us cannot deal with compliments on abilities at all. I can, but within certain guidelines. Don't tell me I am good at a thing, please. Do not ever tell me I am inherently good at a thing. I will freeze. I will tell you why you are wrong. I will know that not having a skill without trying isn't safe around you. Tell me that an aspect of the activity or subject has improved, or looks nice, is dynamic, some appropriate adjective for the subset. My falls are nice. I made saltatory conduction make sense. You love my toe point. I have a good eye for landing deductions. My arrow shooting form is efficient. Whatever. But not the blanket thing please.

And for the love of all that is good, don't ever say that I'm good "for a disabled person". That's pretty much a different post, but if I'm good, I'm good for an anybody person, and I work just as hard as anyone of my skill level. Acknowledge that.

Saturday, April 23, 2016

I know why your child acts out: an analogous situation

As you all know, I have photosensitive epilepsy. I have had a long long struggle with trying to get people to maybe consider not killing me. Long. Exhausting. Futile.

Today I went to a cross disability conference. Someone not me (hooray!) took the initiative in dealing with the flash issue, I got there & they told me and I was like "hooray!" and then went to get coffee before my first session.

Long time readers & people who know me personally know, I've done a lot of reaching out, conversing, talking to people about this issue. They know that I'm pretty much always met with lies & flashing.

We went to our first session, which was quite good, & a photographer (supposedly they had all been talked to already) flashed his flash. It was too early in the morning for this shit. I chucked my pen at him. Someone from the organization putting on the conference took him out to the hall, told him he really cannot do that, & returned my pen to me.

Not a single other flash happened.

Announcements were made. They were observed.

Throwing a pen worked. "Using my words" has never worked.

Ask nicely? They say "oh of course" or "well we can try but no promises" and it's like a godsdamned disco ball. Tell meanly and they act all put out, like it's the world's biggest favor, maybe they'd be more accommodating if you begged more, and it's a godsdamned disco ball. Enlist someone else to ask and they get tone policed no matter what they do (though it may not be a disco ball). Talk with them for years after they have a board member harass you with a camera, it's all promises and scapegoating a man with high support needs and yet more flashes.

But throw a pen? I believe the behaviorists in the audience would call it "one trial learning".

And it was quick and it was easy. Tactful conversations up a power gradient are stressful. Rude conversation up a power gradient is stressful. Waiting for other people to talk so I don't get upset and throw a pen is stressful. All of these things are draining, hard, and not consistently in my skill set.

And they are ineffective.

Acting out worked. And it was efficient. It was so easy. It actually really pisses me off that I have engaged my impulse control for so long, when doing the easy automatic thing, which happens to be the socially inappropriate thing, was so easy and effective. I'd have thrown a pen a decade ago if I'd known it was this easy.

So, like, maybe when "using your words" is thoroughly ineffective frustration, but dumping a desk works? You're gunna keep dumping the desk.

Yeah, I know exactly why.

Saturday, April 2, 2016

I'm aware of your hate.

It's yet another "autism awareness day". Or autism acceptance day if you run in my circles.

The rhetoric never gets better. We can tone it down taupe, red instead, light it up gold, burn it down beige all we want, but we don't control the narrative.

No matter where I turn this month, I am forced to be aware of one thing:

The well of your hate for me & mine is truly bottomless.

There's a slow trickle throughout the year. My Autistic siblings are murdered and the media reports naught but sympathy for the killers. Scary people are armchair diagnosed as sharing my neurotype, with no evidence but that you hate us all. People fundraise to get rid of us.

Epidemic. Emergency. Tsunami. Burden. National crisis. Tragedy.

Those words never stop echoing in my ears, not really, but I can pretend for whole hours at a time that you almost think I'm people, 11 months of the year.

But in April you won't give me that. It's 30 days of solid "we hate you. You should not exist."

It's not just the gush of threats of bodily harm. Those ebb more with current events than with the calendar, mostly. It's the 24 hours wall to wall endless rush of hate and resentment.

It's parents who admit to treating their kids worse than animals being treated as heroes.

It's people giving money to organizations that pay people to go on camera saying they want to drive kids off the bridge.

It's the endless barrage of people telling me  I don't know my experiences because of abilities they assume I have, damn the facts.

It's the other barrage of people telling me that my fear-driven anger with the narrative is unreasonable & a reason I'm too broken to live.

These same people are afraid of autism, but we may not be afraid of the consequences of their hate.

It's blue lights, because "blue is for boys and only boys have autism".

It's the legacy of little puzzle head.

It's the same fear based tactics since I was 16, & they get more frenetic rather than segueing to calming the hell down.

It's how calmly people tell me they don't blame my mom for her violence.

It's uncritical presentation of Indistinguishable from Peers as a good & damn the consequences.

It's the lauding of Good Autistics from rich white moderate backgrounds while ignoring or even taking steps to silence those of us born unrespectable.

It's the rain of infantiliaztion.

It's " do you want to donate money so we can prevent people like you from being born?"

It's the words that say more about you than about us:

Lacking empathy. Rigid. Unpredictable. Violent. In their own world. Perpetual child. Noncommunicative. Soulless. Stolen. Lost. Missing.

It's being reminded it's a tragedy that we have a normal life span. Except we don't. We die 30 years early. Even that is too long for you all.

Everywhere I look you remind me that you hate uhat you hate us. You want us gone. A word for the history books.

I'm aware of the meaning of 'awareness.' Are you?

Monday, February 29, 2016

Rare Disease Day: on having something most doctors are unaware of

It's rare disease day (haaaa aren't they funny, putting it on leap day?) so today I'm going to talk about getting diagnosed with what is probably my rarest cootie.

I write a lot about autism & epilepsy. I have other stuff too because fuck me that's why. The hardest one to get diagnosed is also the most quickly life threatening (though the easiest to treat, for me): tertiary adrenal insufficiency.

What that means? Is that my hypothalamus does not send the signal to my pituitary to send the signal to my adrenal glands to release cortisol. The body does not release cortisol, which is necessary to maintaining homeostasis, without ACTH, released from the pituitary. The pituitary does not release ACTH without being told to via a burst of CRH from the hypothalamus. Make sense?

Here's the thing: it is also really fucking uncommon (especially without lesions in the brain. I have zero explanatory lesions in my brain) and has nonspecific symptoms. This made a diagnosis extremely hard to get.

Let us flash back to 2005. I competed my last trampoline & tumbling meet in March of 2005, because of the onset of some frightening symptoms. Everything (literally everything) hurt. I was running out of energy. Sleeping a lot, but my sleep schedule was backwards. Tired. Dropping massive amounts of weight. Did I mention I hurt everywhere? Very pale, by my standards. Fainting. An uptick in seizure activity. At one point, the world's actual worst headache (and this is coming from someone with cluster headaches; it is still the worst headache I have ever experienced). So, nonspecific signs of 90% of illnesses everywhere, right?

First they decided I was sick.  They gave me a strong antibiotic for an infection that I think I did actually have. But people with Ehlers-Danlos Syndrome should not take ciprofloxin. That was a mess. Everything hurt even more. More seizures. I could not stand up because of the joint pain, which did not relent for almost a year.

Then they tested me for autoimmune diseases. Everything came back within normal limits except the inflammation marker, which was lower than expected (which actually isn't consistent with not making cortisol but whatever, bodies gunna body) and anti double stranded DNA. The rheumatoid factor and the ANA were both normal, & that's what they were really looking at. I did not appear to have an autoimmune disease.

I had to move because I was going to literally die living alone, and moving meant different doctors. While waiting the several months for a general practitioner, I ended up in the emergency room several times with severe unrelenting pain in my middle and my joints, as well as seizure injuries--rather than my usual partial complex seizures, I was also having atonic and tonic clonic seizures. Falls are dangerous. Consistently my vital signs were low, my electrolytes were a bit off, and they decided that it was a side effect of my medication or that I was full of shit. Because I was young, female presenting, on meds, and having a blood work profile they'd never seen that must be the issue.

As my body continued to be deprived of cortisol, and its homeostasis regulating effects, I got sicker. I was barely more than half my current weight at one point--I am pretty healthy looking now. Everything hurt. I was throwing up. I was not digesting the food I kept down. I'd only get out of bed to pee for weeks at a time, & most clothing hurt. I was able to bathe maybe once a week, & I had anxiety and was both always tired & never sleepy.

When I finally got in with the general practitioner I thought she might be useful. She...was the opposite of useful. First she suggested I had a virus; I had not left my place to be exposed to anything in literally 6 months, though I had been possibly exposed to West Nile (that world's worst headache? A more competent doctor who did antibody tests suggested that it was West Nile Encephalitis. And possibly causal of the AI but possibly not). She "does not want to hear that" and told me I was just depressed. I am no fan of minimizing depression. I am also not a fan of telling someone that they dropped 50 pounds and hurt everywhere and everything they love is gone because of it. Other way around, Doctor Useless. I'm depressed because my body has betrayed me and I can do nothing I love.

Doctor Useless talked about scheduling me for a colonoscopy because of the weight loss. Okay whatever. In the meantime I found self pay specialists (did I mention? I live in the US. I was uninsured as shit because Medicaid was only for people actually on SSI, children, & pregnant people. I was none of these things; getting on SSI takes forever).

When your doctor is this useless, and you are going to go over their head and go to specialists, you are required to self diagnose basically. Since the GP in my hometown had been exploring autoimmune options, I presented myself to a rheumatologist first. My main symptoms were still pain and fatigue (pain everywhere. My ribs hurt too much to breathe if I laid down) and the hometown doctor had waffled about with how the blood work might not have changed enough for diagnosis yet since I had been in good shape when I got sick. I also had persistent skin photosensitivity, which was a marked change from my baseline and is a symptom of lupus. So I went to the rheumatologist.

This was my first experience with going into honest to goddess shock. They confirmed that I am hyper mobile (as though that was ever in doubt) and did a bunch of blood draws. Almost 20 vials. They did the regular stuff, every autoimmune panel known to man, heavy metals & a couple other toxins, and nutrient profiles. Rather than my usual light headedness with the blood draw, I hit the floor, had a seizure, couldn't stop shivering. They had to keep me for observation for several hours.

The only suspicious things on that whole panel were slightly elevated metals, of all things, and reduced levels of several nutrients. They said my body would clear itself out on its own (accurate. I had been living in a condemnable place with metals in the paint & pipes less than a year before) and that I needed to take dietary supplements or eat better. The rheumatologist did not think either of these things was actually causal for my symptoms but did not know where to send me.

Here's the thing about having nonspecific but severe symptoms that no one can explain: it's real easy to fall down the quackery rabbit hole. Everywhere I turned, someone wanted to sell me detoxes or supplements or super foods or fancy diets. Since I actually knew what my numbers were for "toxins" (elevated but not going to kill me, nor enough to explain the duration & severity of symptoms, also the timing was wrong), and for reasons of other people in the household I was eating a diet clear of the popular dietary "toxins" anyway, I did not fall prey to these as easily as many people can. But the desperation makes sense. All you want is an answer & to feel better.

While searching for the next specialist I had another appointment with Doctor Useless. I had lost more weight, though really I was at the point where that should be impossible. I also had an extended EEG, where they caught a bunch of weird but nothing that was explicitly "we can cut this out". I threw up every day that I was in the hospital and had no blood pressure and didn't sleep and it was miserable. Never again. Doctor Useless again expressed her opinion that I had a virus or depression or yes, and tried again with the colonoscopy. That the clinic is slow is what kept me from dying on a colonoscopy table--that is a procedure that people with all the adrenal insufficiency diagnoses need stress dose steroids for.

In February of 2006, almost a year exactly after my sudden downward spiral, I got in to see an endocrinologist. He took one look at me, literally one look, and asked if I had ever been on prednisone? Did it make you feel better? I had not at that time. I did not have an answer. He sent me immediately for an ACTH stim test and blood draws on all hormones, especially ACTH and cortisol.

For an ACTH stim test, they take blood to measure your baseline level of cortisol. Then they inject you with synthetic ACTH. At 30 and 60 minute intervals they measure your cortisol again. About 15 minutes after the injection was the best I had felt in an entire year. I could skip, a short distance (muscle atrophy is a thing). I was awake. I was hungry. The perpetual nausea was gone. Everything I had read said that adrenal insufficiency was rare, but it seemed that it might be my answer, or the most disappointing placebo effect on earth.

The next morning I got a call from the endocrinologist with the good news: I had central adrenal insufficiency. Not Addison's, I would make cortisol just fine if the signal was sent, but it is not. He asked for my pharmacy information so I could start prednisone right away (now I take hydrocortisone, which is bioidentical with cortisol, but prednisone has a longer half-life and I was really sick so once a day dosing made sense. I think that was the rationale). I was also prescribed an injectable steroid that I would have to use if I couldn't keep pills down or got an acute significant injury.

Starting steroids was sort of a miracle, except the part where I will now spend the rest of my life explaining why I am on steroids. I take a physiologic dose of a stigmatized class of medications. It is exactly the same amount a person of my size and activity level would release. And yet I constantly have to explain that. Since I switched from prednisone to hydrocortisone, I am no longer immunosuppressed--my pred dose was just high enough to dampen things a bit. I am not on anywhere near enough for any of the rage or depression or other side effects like that, because I am on the same amount most people just produce on their own. No, I do not want to stop taking it, I like being able to live my life. The bruising is not because of steroid toxicity, it is because I am an extremely active person with a connective tissue disease. Yes, I have put on a buttload of weight since starting the steroids. Because I was substantially underweight and run mesomorphic. It's a good thing, really it is.

I'm no longer photosensitive, and I am Hapa, so my skin tone does run on the darker side of pale or the lighter side of medium and with very warm undertones, so at least once a year I get asked if I am sure it isn't Addison's (yes. Stop being racist. My skin has always looked like that except when I was too sick to move). No one was using my emergency injectable steroid, so they discontinued it. The pharmacy didn't know how to use the new one, so some day that's going to be exciting. Everywhere I look people are talking about the evils of cortisol. Which, like, fuck you. I almost died because I don't release that. But you people don't even know that's a possibility or what it actually does.

I've had a number of surgeries and had to explain to them patiently that they need to give me extra steroids or I will go from just fine to flatline the moment I feel anything. They almost didn't with my last surgery, but damn were they glad they did because upon awakening my body did some wild stuff. I've had some very scary times in emergency rooms with my heart rate below 50 and my blood pressure too low to accurately measure, where doctors just kind of unplug the yelling machine because they don't really care that someone multiply disabled & being very passive is going into quiet cardiovascular collapse in their hospital. They have never seen adrenal crisis so the obvious solution is to pretend it doesn't exist. It's a very quiet crisis.

I also deal with doctors who mishear that I said I have "tertiary adrenal insufficiency" as "I am a vaguely tired conventionally attractive woman who thinks I have adrenal fatigue". This is on the list of possible causes of death. Adrenal fatigue is not real but it is a trendy naturopathic diagnosis, and I live where naturopaths are taken a bit too seriously. Adrenal insufficiency is real. And it can be fatal. But they have heard more of the former than the latter, so they use their "hysterical woman" voice rather than their "I don't know what that is, we talked about it for 90 seconds in med school if that" voice. So that's exciting, ones rare disease being co opted as an explanation for why people feel crap. I'm not ok with that.

So. That's being diagnosed with a rare disease. It isn't like House at all. They look for other reasons even if they don't fit. They are uncomfortable with your treatment. You have to basically diagnose yourself first. You spend the rest of your damn life explaining it. And your meds get discontinued for lack of popularity.

Happy rare disease day?

Friday, February 12, 2016

Things at Autism Events that Make Me Uncomfortable

This post is inspired by an Autism Speaks walk & an Autism Society of Oregon "adult" conference several years ago).

-Parents with adult offspring talking for and about them while they stand right there mortified.

-Obviously sensory unfriendly surroundings (loud thuddy music? really?)

-Cognitive dissonance on full display--Lee Grossman & other CEOs who talk about 'these kids' at events ostensibly about adults? I'm looking at you.

-Being the only person to call people on their bullshit.

-Being scolded for this.

-Being thanked privately for this. What the fuck.

-The double standard for autistics & allistics.

-Grossly inappropriate cure the kids! talks at 'adult' conferences.

-Erasing of adults who are likely to be pushed into the cracks (you know, those of us who speak & can make you think we know things).

-Assumption that we have Ability A because we can do Task X.

-Being expected to be a universal translator.

-Being erased because I'm cute, female, and athletic.

-Parent-centered everything.

-Being hit on. A lot. Persistently. When I say not interested. Ad nauseum.

-Scaremongering, from anyone.

-The looks I get for taking care of my sensory needs.

-Being talked to like a toddler.

-Allistic professionals' continued insistence that their Unethical Treatment is ok & browbeating me to try to get me to agree.

-The continued pressure to cede my voice in autism issues because as an autistic person I clearly don't know what I need or want.

This was initially written in 2010. The only thing that has changed is Lee Grossman isn't still the CEO of Autism Society.