Autistics Speaking Day

I want to say something. So here goes: FUCK.A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscation

Seriously.

No, I’m not trying to make the blog unsafe for kids (that said, I’d love to meet the kid who hasn’t heard the word “fuck”).  But this is a huge part of what I want to say: we will say things people like.  And things they don’t.

We’ll cuss. We’ll insult people. We’ll talk dirty. We’ll lie. We’ll do all the things that the sanitized, nice, touchy-feely movies about escaping from autism or about how there are geniuses in the autistic population won’t say.

We say – if we’re allowed – these things even if we use speech devices. Too often, we’re silenced by being given devices that don’t speak these words. (hint to parents: if your child uses a speech device that uses a language system – not just spelling, but a word-based language system – and it doesn’t include some words you don’t ever want to hear said, the vocabulary is too small for your kid) Seriously, kids cuss. So should autistic kids. Just like neurotypical kids, we need to learn what is and isn’t appropriate in what context. Whether you like it or not, it is appropriate for two fifth graders to share lists of cuss words with each other. It’s not appropriate to do so in the hearing of an adult. That’s a pretty important social lesson to learn – that your communication needs to change based on audience. How do you learn that if you’re only options in language are always appropriate for the adults?

We say we’re horny. That we’re aroused. That we want to have sex. Maybe even that we want to fuck. Just like a neurotypical does. Sure, there are all types of sexualities among autistic people, including asexuality, but most of us aren’t asexual. So we want these things. And need to talk about it. Yes, there are more and less appropriate places. And, yes, we may or may not have our parents’ moral values. But we need the same rights that any other adult has – the ability to express our sexuality, including expressing it in ways that while legal may not be what our parents would like.

Too often, we live in group homes or institutions where the staff fears the complications that a sex life would bring into their own jobs. Or have religious views about what sex is or isn’t okay. That’s fine if we willingly agree to those rules and have real options and places to live that don’t include those rules. But most of the time, we don’t get that choice when placed into group homes or institutions – we have to take what we get, or run away. A neurotypical might choose to live in a monastery. An autistic shouldn’t be forced to. Yet, studies have shown that many – quite possibly most – group homes ban homosexual relationships while allowing limited (usually way too limited) heterosexual relationships. It’s another place where our desires don’t matter.

We also need to be able to say “NO.” As in, “No, I don’t want to go to work today.” Or “No, I don’t want to eat that slop.” Neurotypicals get to do this. Sure, there are consequences (although often we get away with some of this – how many people use a sick day when they aren’t sick?). Heck, sometimes a neurotypical might wake up in the morning and decide – for better or worse – that going to work sucks, that there is more in life than their job, and that they really don’t want to go to their job. Ever again. Yep, that causes unemployment sometimes, but it’s something many neurotypicals have done sometime in their life. They were allowed to. Sure, there are consequences. But they weren’t prevented from making the choice in the first place.

So I guess that’s my theme: if people want us to speak, you need to let us speak. Even when we say shit you don’t like. We’re not pets, we’re not puppets. We’re human. And that means you won’t like every moral choice we make. Just like I won’t like every moral choice you make. That’s life.

 

Nothing About Us Without Our Parents

There are three classes of people when it comes to autism – autistic people themselves, parents and caregivers of autistic people, and “normal” people.

Of course the “normal” people typically get to dictate how things work – after all, they beat out the other two groups by sheer numbers.  Just read a letter that was sent to a parent of an autistic kid.  It starts by saying:

I also live in this neighborhood and have a problem!!! You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in close proximity to a neighborhood like this????

The grandmother’s crime (the autistic boy was with his grandmother) was living in a neighborhood and allowing her grandson to visit.  The letter was signed by “One pissed off mother!!!!!”

Now, we all know that most people aren’t the assholes that this “one pissed off mother” is, and we can even see that in the reporting of the community response to the incident. But just because most people are decent doesn’t undo the damage from the assholes. Every time a mother or father of a kid who makes strange noises, does things strangely, has meltdowns, or just somehow otherwise acts different goes out in public with their kid, this mother or father has to fear how people will react.  They have to ask, “Will I meet an asshole today?”

Heck, even a local police chief may be the asshole, should your kid cry in a restaurant.

Often, parents and caregivers get dirty looks when they go out in public with their kids. Others say, sometimes subtlety, sometimes not-at-all-subtlety, “You’re a bad parent.”  After all, a good parent would have normal kids.  Kids who don’t do things differently, don’t make noises, don’t have meltdowns.  It’s, in a sense, an extension of the refrigerator mother theory of autism – autism is the fault of the parents.  If the parents were good parents, supposedly their kid would be more normal – that’s the persistent message to parents of autistic kids.

So, it’s not surprising that some parents have latched onto nearly every possible theory to explain autism, at least theories that don’t blame them in any part (even passing on genes is seen by some as blaming the parents). The origins of the Autism Society of America are based in this – find the true causes of autism and stop vilifying parents! In a sense, much of the advocacy work was advocacy work on behalf of not the child, but simply that the parent wouldn’t be blamed for the child’s behavior.

Certainly, that work is important, and, too often, it is ignored by autistic self-advocates today. Your parent shouldn’t be blamed for your autism! And, largely thanks to parent advocates, they generally aren’t (although their work clearly isn’t done yet – assholes persist).

But, the voices of parent’s aren’t the voices of the people most impacted by autism. Those voices (and other communication) are those of autistic people. We weren’t even included in the membership or leadership of the early autism organizations (and we lack this in many of the current ones). No, parents spoke for us.  Parents might have been treated like crap by society, but they still had more status than we had. If parents were the second class, we were the third class.

Even today, the idea that we should be the key stakeholders in policy decisions about autism is well beyond simply being controversial. It’s unheard of.  While the disabled community has the mantra, “Nothing about us without us,” the implementation of this mantra is typically, “Nothing about us without our parents.”

We see the impact of this even today. When a parent attempted to kill her autistic daughter recently, the press and public expressed sympathy.  Oh, not sympathy for the victim. No, sympathy for the mother. It’s a lot easier for most adults to put themselves in the shoes of the mother than the autistic child. Paula C Durbin-Westby talks about this in her blog.

Even when murder isn’t involved, it affects us every day. Just as the parent has to worry about the asshole, so does the actual autistic person. Most of us have had horrible childhoods. We know how autistic kids are treated. And it’s even worse than how parents of autistics are treated.

But it doesn’t stop when the child leaves the home (and, yes, the vast majority of autistic people do leave the home). If you think a parent gets a dirty look when a child has a overload in the grocery store, try being an autistic adult having a overload in public. We get the blame. Fully and completely. We may end up arrested or otherwise have freedoms removed from us. We’ll probably be asked to not come back to that area. We’re simply not wanted. At all. People can sometimes understand a kid doing this, but they don’t understand an adult that can’t cope with too much input or stress.

And just try – as an adult with autism – to suggest that autistic people should define laws and rules regarding autistic people. No, we can’t do that. We’re just one of the stake holders – and an optional one like that. We’re used when it’s convenient to someone else’s message. But our voice is not all that important without someone else saying it is. After all, we’re just the people affected by these things, we’re not parents or caregivers (never mind that some of us also are parents or caregivers of autistic people too!).

So while I don’t support the second class treatment that parents of autistic people get, and will do everything I can to support parents in ridding the world of that prejudice, it can’t stop there. I’d like autistic people to at least one day get second class status, not the third class status we have today. I’d like one day for us to get treated just as badly – but not worse – than parents of autistic people.

Even better, I’d like all of us to be treated decently. Parents shouldn’t be scared to go out in public with their child. And autistic adults should have a key say in how autistic people are treated (and, lest I leave out a disclaimer, I’m not saying parents shouldn’t have any say, particularly when it comes to being a voice for their child). We shouldn’t just be an optional voice or an after thought. We should be at the table when you’re first thinking of discussing these things.

Equally, I’d like to see a place where our murderers don’t get more sympathy than we, ourselves, do. But maybe that’s still too much to ask. So I’ll settle for second-class status right now.

Notice Anything Missing?

frontlineFrontline (PBS) did a program recently on assisted living facilities (you may be able to watch it – I don’t know if there are geo restrictions or not, but I can see the video as a US resident).  For people who don’t know, these are the mostly unregulated places that are sold to older people (and their families) as “better than nursing homes.”  However, as this program explains, they too often come with problems too.

But, that’s not why I’m writing this.  I’m writing because something was missing from this program.

No, I’m not writing about the program’s bias towards nursing home care (you need nursing home care to prevent bed sores in elderly disabled people?  Really?!).  That was a problem too, but that’s not what I’m writing about.

I’m writing that not one single resident of an assisted living facility was part of the program.  Not even one.

Oh, they’re crazy batty old folk.  Why would they matter?  Why should their voice be part of a program about how to treat old folk?

I’m kind of used to this.  I’m kind of used to watching TV programs about autism that don’t include any autistic people (but do include plenty of parents, researchers, doctors, teachers, and staff people).  And I’m used to us being excluded from the story when one of us is hurt, abused, or murdered.  Heck, we’ll hear how hard it is to take care of an autistic person, but we won’t hear how this type of thing makes autistic people feel.  Or what we might want done about it.  We don’t matter.  We’re just crazy people without emotions.  Ya, right.

Apparently older people are in the same category, particularly if they have dementia.  Get a diagnosis like that and you can’t possibly know if you’re being taken care of or not, right?  Uh, no.  You can.  Surely there was at least one person in one assisted living facility somewhere in the United States who had an opinion on their living situation that was worth hearing.  Maybe they like it.  Maybe they hate it.  I don’t know.  I didn’t get to hear them.

I’m sick of the people affected being ignored when this type of thing happens.  Yes, I’m used to it too.  But that doesn’t mean we should be silent.  Shame on you, Frontline!  There was a story there.  But you missed the most important people in that story.

Akathesia is no big deal, right?

10mg Haldol Tablet

10mg Haldol Tablet

Let’s say you go into the emergency room, screaming in pain. You let the doctor know that there are drugs that will help you, but, unfortunately, like many pain drugs, they also are abused by some, so the ER doesn’t want to give you those drugs (another part of our war on drugs that has collateral damage – but heck, it’s only sick and disabled people, so who cares – we’re supposedly making a difference in drug addition, after all, and sacrificing the sick and disabled is worth that [yes, sarcasm]).

Then you make a mistake. You mention a past mental diagnosis – you know, something like autism. But it could have been any number of other labels – depression, anxiety, OCD, MPD, PTSD, etc. After all, you assume that they are asking all these medical questions of your past to help you, right? No, they’re trying to label you. And once crazy, always crazy. Even if complaining about something completely unrelated to crazy. Like pain.

But, with this new information, the ER staff says, “Oh, he’s crazy. That’s why he’s screaming. We need to calm him down.” NOT “we need to relieve his pain.”

Maybe they do some tests (more on that in a bit) on the off chance they are wrong. But while waiting for those results, let’s get the person to quit screaming. Now there are two ways of doing that: we can actually treat the complaint or we can do some other random shit. Treating the complaint is boring medicine. So let’s do random other shit.

Let’s say the person I’m describing above was given Haldol and told it was “for pain”. No, it was to sedate and shut him up. But crazy people don’t need to give consent, right? The result of this was a significant bought of akathesia – basically the person wanted to die right then and there. In other words, the Haldol made him crazy. But of course that’s not what that’s seen like – what it’s seen like is they need more sedation, not that they are having a bad reaction to Haldol (despite bad reactions being common – more on that later, too). Crazy people act crazy. It’s self evident. Oh, not just crazy. But also drug seeking probably because they are an abuser. Lots of crazy people are, after all.

And don’t even think about telling them it makes you react bad. The only reason you’ve been given Haldol is because you’re crazy, and just saying you don’t need or want it – or that it does bad shit to you – is proof you need it. Great, huh? Don’t believe me? Read M.D.O.D., which I quote:

If I read on the triage sheet that you are “allergic to haldol” I will duck and dodge and try not to see you. If someone has given you haldol you are either schizophrenic, in which case you need it or something like it and it’s really too bad you are allergic to it, OR, you are a freak, and one time when you were completely bat-shit crazy in the E.D. six people held you down and you got a nice intramuscular injection of this neuroleptic drug. You didn’t like it because it made you shut the fuck up and feel unpleasant hence you tell people you are allergic to it. No worries though, I’ve got more up my sleeve if you freak-out again. Lot’s more, but I’m not saying what so you can’t tell me you are “allergic” to it. Haldol, if you are crazy it makes you sane, if you are sane it makes you crazy. Beautiful.

Really, that’s a doctor posting something I think he thinks is funny and amusing. Clearly he hasn’t experienced the side-effects, nor does he see his patients as even remotely human. I wish this type of doctor was rare, but it’s not.

On those side-effects, read about one form of the drug. If you’re not willing to give someone a painkiller in the ER because of possible risk of bad things happening (contributing to drug abuse), why the heck would you give this, when you don’t have a patient relationship and the ability to monitor? Simple: They are crazy and you don’t give a fuck.

Of course that Haldol causes akathesia isn’t particularly new news. Here’s a 1984 study – yes, 30 years ago – 40% of patients experienced akathesia within 6 hours of a single dose. Within 7 days, 75% did. And it was severe – life threatening – akathesia in many cases. And for many people, NOTHING could treat the akathesia. Really about all you can do is sedate, wait for the drug to leave the bloodstream, and maybe restraint so they don’t act on their strong desire to die. That the doctor caused. The best quote in the abstract? “We believe these tallies to be important because akathisia causes much misery and often goes undiagnosed.”

But of course if you’re a hospital giving people Haldol and then walking them out the door, and the person kills themself a few hours later, that’s because they were crazy. You tried to help, after all.

I probably should take a minute and define akathesia. It’s life threatening – see this British Medical Journal case study (also drug induced, as are most cases of akathesia). Akathesia is hyper-arousal, typically also accompanied with severe restlessness and inability to sit still. This is seen as craziness of course. Unfortunately, much of the writing talks about akathesia being “uncomfortable”. It’s not uncomfortable. It’s life threatening. It can be the worst anxiety you’ve ever experienced. That’s not a comfortable thing – you just want it to stop.

Of course akathesia isn’t the only side effect of these drugs (and Haldol isn’t the only one, nor are newer drugs significantly different in side-effects, despite the best attempts of marketing to say otherwise).

Oh, the thing that they initially treated with Haldol? For the person I’m basing this article on – with many personal details changed – one of those “long shot” tests came back. Meningitis.

Haldol is not a treatment for meningitis. And the person’s symptoms were consistent with meningitis. But the Haldol nearly killed the person prior to getting proper treatment for meningitis. But until a supposed crazy person can prove their illness has nothing to do with being crazy, everything is because they are crazy. Everything. And they’re a drug seeker too.

An Anniversary

Yesterday was my wife and I’s forth wedding anniversary. It’s been a wonderful time. We have one of many autistic marriages we know of – it’s clear we can form relationships just fine, thank you very much. I also think the basis of our marriage – honesty and communication – would help out a lot of other relationships among people who aren’t necessarily autistic.

I’m also thankful that in the USA, my federal government is recognizing same-sex marriages. That removes some of the taint of unequal treatment of others from my marriage, and thus makes my marriage more beautiful. Others are for the first time experiencing what straight couples have experienced for years – being treated like people.

Yet others still have trouble getting married – group homes deny people the ability to live together, people may live in states our countries that refuse to recognize gay marriage, or there may be any number of any reasons. My wife and I spent some time yesterday thinking of this.

We also spent some time thinking about the people who are single, either through choice or because they have not yet met their future spouse. There’s a ton of discrimination against single people – society assumes we should be married, even when we aren’t (and may or may not want to be). So we also remembered those people.

Our desire should be everyone’s desire: we want to see people happy (obviously without harming others). Whatever that ends up meaning.