I’m Sorry I Hurt Your Feelings

Really, I’m sorry I hurt your feelings.

Perhaps you are a parent, a therapist, a brother or sister, or somehow otherwise someone who has an autistic person in their life.

Perhaps I said something you didn’t like. Maybe I said I don’t want to see autistic people medically abused to solve “behaviors.” Maybe I said that ABA therapy is harmful. Maybe I said your anti-bullying system is cruel because it focuses on changing the bullied rather than the bully. Maybe I said that it’s okay for autistic people to have sex and masturbate. Maybe I said that doctors ignore our complaints. Maybe I had no sympathy for someone who murdered an autistic person, and said I don’t give a shit if they were stressed.

You see, no matter how nicely I try to say these things, how gently I try to explain that some things people do to autistics (even with good intentions) cause harm, it’s not these things that matter. Often, it’s the non-autistic’s feelings.

Even worse, for autistic people, these things aren’t about us wanting to defend our pride and ego, to have people have sympathy for us, or to justify whatever it is we’re currently doing. No, they are about our life.

You see, you might be upset because I dislike some random social skills training program.

Yet I had the shit kicked out of me for not being normal. I’ve literally run for my life. Even as an adult, I get stares, fingers pointed, and laughter directed at – certainly not with – me. So, yes, I’m sorry I said that social skills program was bad. But I’ve had decades of social skills training, decades of society trying to fix how I interact through negative reinforcement and repetition. I’d like to see people like myself able to live without fear of beatings and humiliation just because we forget some social rule.

You see, you might be upset because I say that the medical world sucks for autistic people, or that a drug is bad, because you’re doing that thing with someone you know.

Yet I go to the doctor and have my cries of agony ignored, because I’m probably just “anxious.” I’ve never had pain adequately treated by a doctor, with the exception of some dentistry (and only some). My cries of pain are ignored. Pretty much always. As are my sensory concerns. Ironically, I’m accused of not wanting treatment for autism, but when I ask for treatments that exist for sensory conditions that cause me pain, I’m ignored or told “everyone has that.” No, everyone does not have this pain when they go outside. You’re upset because I said the strong anti-psychotic you gave your kid might be a bad idea. Of course I’m part of the people doctors try to trick into receiving it against our will. So, ya, it’s a little personal for me.

You see, you might be upset because I lack empathy with the parent who drowned/choked/poisoned/stabbed/shot their autistic child — I don’t recognize how hard it is to be a parent.

Yet it’s not non-autistic parents that are being drowned and choked and poisoned, it’s autistic people. It’s people like me. So you aren’t going to get an apology from me when I have more empathy for the child that was a problem to dispose of, rather than having empathy for the adult who should seek a solution to their problems that doesn’t involve murder.

I realize #NotAllParents are awful to their kids. Plenty of therapists do good work. There are some wonderful doctors. I get that – how could I not? But I should not be forced to shut up about how me and my kind are being harmed just because people don’t like hearing certain things they might or might not do are harmful. All too often, we’re asked to remember the feelings of others, and how it might feel to have something they do be criticized – as if we don’t know what that feels like, having everything from the way we smile to the way we show joy to the interests we have to our self care skills criticized our entire life. We know what it feels like to be criticized. We also know what it feels like to be subjected to constant behavioral treatment, forced medication, inferior medical care, sub-standard education, and physical attack. We know what it feels like to be bullied every day of 13 years of school, with no day when you’re just left alone. We know what it feels like when the first thing talked about when another autistic person is murdered is how hard the caregiver’s life must have been.

In the meantime, I better remember to tell all the non-autistic people that they are okay and doing nothing wrong, whether or not they are. I can’t leave this unsaid, lest some person read criticism that wasn’t intended. Their feelings matter. That’s what this conversation is supposed to be about, after all.

What’s Wrong with Advanced Directives

Do you want to cut health care costs in America?  It’s simple – you could save substantial money by doing one thing. You encourage people to create advance directives for what they would like to happen if they are unable to speak for themselves in the hospital.

For instance, someone might say they don’t want CPR, don’t want a ventilator, don’t want procedures that are painful and only prolong life by months, don’t want procedures that would save their life but leave them disabled.

In fact, they do. They say exactly these things when asked – at least a lot of people do. People want to “die with dignity.”

Here’s where I have the problem: If the decisions are made with informed consent and out of personal desire, I’m generally fine with this. But I don’t think most of these decisions are made with consent.

I was recently listening to a Planet Money podcast on this – listen to the actual story, as this isn’t in the article, if you want to hear what I’m concerned about.  Basically, this town has a remarkably high number of people who have completed advance directives, something I agree most people should do, but do carefully.

The problem comes with two things. First, as the show points out, this saves money, by not keeping people alive with expensive procedures who indicated they don’t want to stay alive in those situations. This can be ethically neutral, unless the person thinks, “I want to leave my life savings to my kids, so I don’t want the hospital using all of my money on me. In other words, I worry about people making a financial decision on whether they should live, and I have a huge objection to someone dying who might want to live on the basis of finances. Directives in favor of discontinuing care are scary when there is finances involved. This certainly could be solved through funding healthcare properly, so that it’s not a concern. In other words my heirs shouldn’t have less money because I told the doctors to do everything they can for me.

The second problem was when one man in the story was asked about situations and his choice – situations like whether he would want to have life saving surgery that would leave him blind or leave him unable to walk. In both cases, the man, likely sincerely, said, “No, I don’t want those surgeries.” Now, this is hypothetical and this probably wasn’t a real possibility for the man, but it is scary. What was he basing this decision on? I don’t know what he does and doesn’t know about disability, but if he’s like most people in the USA, disability is terrifying to him – there is probably few things worse than being “confined to a wheelchair” or being blind. To people with those disabilities, these disabilities need to keep anyone from leading a full and exciting life that they enjoy. But chances are he doesn’t know many people in a wheelchair or blind. Even more concerning was that the question wasn’t, “You’re going to die shortly and be blind if this surgery happens, and probably be in a lot of pain. Do you want to die painlessly in that situation?” That’s probably the question the guy thought he was answering (that said, I could be wrong, and hope I am).  He answered that he didn’t want those surgeries – even if he would live another 60 years without any other problem from the surgery) – because the question just asked if he wanted these types of procedures that could leave him with a disability for the sake of curing illness. In other words, this wasn’t exactly an end of life question, even though he probably thought it was.

And that’s where I have the problem. I don’t like people making decisions about their death on the basis of biases against disability. I hate it for a bunch of reasons. I hate it because I wonder whether or not this man would make this decision if his wife was disabled and he knew better what disability is like. Or if he was presented this information in another way. Equally, I’m scared about how disabled people are viewed by him, and if these prejudices are shared by other people – like people in hospitals. Do they see a disabled person and do a calculation, “This person is suffering more and would probably prefer death?” There’s evidence that this does happen. Routinely.

I do think people should fill out advance directives and let their families know what they want for medical treatment, if they are unable to speak. I believe very fully in this. But only with consent and without the financial motivation to choose death.
I have a good life. So do my blind friends, my wheelchair using friends, and, indeed, “even” my friends with chronic pain. Learn about us before you decide a life like ours isn’t worth living.

Please, give me Standard Medical Care

NPR did a story on how disabled people get substandard medical care, because medical professionals simply have no idea how to interact with disabled people.  Of course the story had it’s own bias – see if you can spot it:

What was different about this patient? Was it a dangerous, contagious disease? A mental health problem marked by a violent streak? A history of weekly drunken visits to the ER?

The context was a patent being ignored in the ER by medical personnel who didn’t want the work involved with looking at a person in a wheelchair. Now, I’ll note that people with dangerous diseases, mental illness, and substance abuse also need help in the ER when they come in. People don’t show up just for fun (yes, I know some doctors think people do, but seriously, no, we don’t), even when we’re complicated. When I go to a doctor, I worry that if what I complain about can’t be seen, in black-and-white, on the printout from a lab or on a computer screen, then it’s not real. Oh, it’s real enough. But not to the doctors. It’s in his head, and thus untreatable with real medicine. I’ve seen this with plenty of people I know – their concerns, because they are medically complicated get dismissed as rantings of a crazy person that is just wasting people’s time. It’s amazing what happens when the lab results come back with some actual problem – suddenly, it’s worth treating the person, and the problem has just become real. It’s no longer in their head. I’ve seen several responses to people with autism and other neurological disabilities at the ER and doctors’ offices:

  1. Most common, “you aren’t really sick.” Nevermind you’re complaining about a pain severe enough for you to find a way to drag yourself out of your home, deal with ignorant medical staff, rack up a huge financial bill you can’t afford, and put up with insulting and degrading procedures. You’re not really sick. Only non-disabled people get sick, after all.  You’re disabled.
  2. Related to the above, “Of course, you have .” Everything wrong with you is seen in the light of your disability, and thus untreatable. If it’s a neurological disability, it’s your craziness that is causing this. You’re not screaming because you’re in pain, you’re screaming because you’re batshit nuts (get out the Haldol!). Nevermind it may really be a toothache or menningitis or a UTI – we’re seeing it as crazy.  If you have a physical condition, then it’s all about that physical condition. Can’t feel your fingers? That’s probably because you’re in a wheelchair. No big deal.  Take a Tylenol if it really bothers you.
  3. You’re what? This is the, “Oh, you’re an artist?” in response to telling a doctor or nurse that you are autistic, followed by your explanation, “No, AUTistic, not ARTistic.” Repeat times 10 if you have a speech disability too. I’ve seen this with people who have relatively common medical conditions – “Does that mean you have sex with men and women?” in response to hearing someone is intersexed (yep, that gives great confidence you can care for a complex condition). “I don’t talk” written on a piece of paper (after 10 minutes of getting them to notice the paper) gets the, “So what does that mean?” response. Oh, it also proves you’re crazy unless they can see you have a physical cause for your muteness, like a missing head.
  4. You’re an addict. A lot of us are on a lot of medication, and if that includes pain medication, then that’s the cause of the problem. You see, we’re really druggies seeking more drugs. Nevermind that our doctor has trusted us with Opiates for 20 years and knows we don’t run out before we should and that they help our body. No, we’re saying we hurt because we really want more drugs for our fix, not because we want someone to do something about the unusual pain we have right now. So the last thing you’ll get, if you have chronic pain, in an ER is help with your pain if you have an unusual pain. Every person with chronic pain is looked at as a druggie. Oh, they have no problem putting this in your file based on knowing you for all of 5 minutes. It’s the one thing in your file they’ll actually read next time they ask you to tell them every surgery you’ve had since birth (which you’ve done 20 times in the past at the same hospital).
  5. This one always scares me: “Oh, this is interesting.” It means that this doctor sees herself as someone who can unravel medical mysteries in 5 minutes with no background on my complex medical history. They’ll take 5 minutes with me and decide, “Oh, you’re primary care doctor doesn’t know what they are doing. They are treating your chronic condition using . You really should be on ” Nevermind you’ve tried X, and X doesn’t work or really does make you batshit crazy.

When I go in, I literally pray, “PLEASE let this be something obvious and easy to diagnose.” Because if it’s not, I’m going to get injected with psych drugs I don’t need, have my other medications discontinued in favor of this month’s preferred drug, be told that I don’t really hurt, and have my file annotated with “drug seeking.” Seriously, I’d rather have a heart attack than a severe, but non-life-threatening, pain when I go to the ER. The heart attack they will find quickly and treat effectively – because they can ignore everything I say and still treat it. But they will ignore everything I say if what I say is essential to diagnose the real problem. Just once, I’d like to go to an ER – or have my disabled friends go to an ER – and be believed from the start when we say we hurt and need help.  Just once.

A Response to All the Quackery & BS in One Blog Entry

This post started because I realized I’d go to jail for cleansing colons. I saw one too many articles today about cleansing colons. My first thought was to go cleanse some people’s colons for publicizing this quack crap, but I’d probably end up in jail.

So I’m going to write instead. And it’s probably going to piss some people off. But, you know what? I’m sick of people messing with their kids’ bodies on the basis of instinct and what sounds good. Facts are not evil, people! When you have some facts, you should use them.

Sadly, the people doing the actual colon cleansing on innocent children get away with it, without jail.

So here’s my response, just in case anyone is curious about any of this.

First, your kid doesn’t need his colon cleansed.

Seriously. He doesn’t. No, he doesn’t. Yes, he has shit in his colon. You do too. But keep the shit in the colon and don’t replace your brains with shit. It’s supposed to be there! But you can read about the science of this here. Don’t have shit for brains. Keep it where it belongs.

Your kid doesn’t need a GF/CF Diet

Okay, if your kid really has celiac disease, certainly keep him on a GF diet (no need to do CF, however). For those not in the know, GF is “gluten free.” Gluten is found in pretty much all wheat and grains. Here’s a news flash: grains and wheats are good for you (unless you truly do have an allergy, and most of us don’t, autistic or not). It’s one of the key things that makes bread, well, bread.

CF is “casein free”. Casein is in milk and milk products. If your kid has a milk allergy (not noticed through behavior, but rather by things like a life threatening anaphylaxis reaction, hives, swelling in the lips and throat, etc), certainly don’t give the kid milk! But, again, milk is generally good for almost all autistic people.

Your kid almost certainly isn’t both gluten and casein allergic! If you have that rare kid, certainly, feed them whatever is left that doesn’t contain these things. But get a second opinion when deciding to alter your kid’s diet and restrict him to only a handful of things. The medical profession actually can diagnose this type of thing, so let them!

Now, lots of people say that removing G or C from a diet made their kids behave/communicate/toilet better (actually, it’s almost always both G and C). Science says bullshit in general.

You Don’t Need to be Perfect

Related to diets and such, one common quackery theme is that even one particle of contamination (where contamination is something natural in food, like gluten) will cause your kid to regress. The theory is basically that this seed of evil will germinate inside your kid and destroy him, without another cleansing/chelation/etc treatment.

So, if the treatment doesn’t help, guess what the problem is…if you guess YOU, you guessed right! You probably missed some infinitesimal seed of gluten. You didn’t do it good enough. The diet is fine. It’s you that’s a failure.

Again, that’s bullshit. One microgram of wheat will not hurt your kid.

But putting your kid on an extremely restrictive diet (how many food items can you name without milk or wheat or grain) is not good. It’s a lot harder to make a balanced diet when you cut out whole food groups – especially if your kid is a picky eater. Heck, plenty of autistics practically live on pizza. I’ve tried GF/CF pizza. Never again.

Shots don’t Give Mercury Poisoning

I’m not going to bother to support my argument, not because I can’t, but because thousands of other people have done so online, who have a lot better medical knowledge than you or I do.

Vaccinations are safe.  Period.  You are rejecting science if you don’t believe this.

Vaccinations also keep your kid well.  Despite the garbage to the contrary, it is good for your kid to be well.

Mercury Poisoning is Nothing Like Autism

Despite a published list a few years ago by some quacks that compares “symptoms of mercury poisoning” to “symptoms of autism,” the symptoms are not even close to the same. Mercury poisoning affects the skin and, particularly, the eyes in addition to the brain. If your doctor can’t tell the difference, you need a different doctor.

You Don’t Need to Ingest Metal

No, gold dust, gold pellets, and gold salts are not helpful. If you want gold, stick to jewelry that you like the look of. After all, it’s not even that great of an investment. But I’ll guarantee it’s a better investment as a coin or jewelry than ending up down the toilet.

Nor do You Need to Chelate Metal!

When the quacks aren’t trying to get people to take metal, they chelate them. Again, mercury isn’t autism, but plenty of quacks convince people it is. In the process, they suggest things like chelation – a process that is designed to remove metals from the body. One particularly scary treatment is EDTA chelation. Like most autism-related quackery things, it’s also a sold as quackery to cancer patients – so the American Cancer Society says some things about it, including:

Available scientific evidence does not support claims that chelation therapy is a safe treatment for any type of cancer. Chelation therapy may produce toxic effects, including kidney damage, irregular heart beat, and swelling of the veins. It may also cause nausea, vomiting, diarrhea, and temporary lowering of blood pressure. Since the therapy removes minerals from the body, there is a risk of developing low calcium levels (hypocalcemia) and bone damage. Chelation therapy may also impair the immune system and decrease the body’s ability to produce insulin. People may also feel pain at the site of the EDTA injection. Chelation therapy may be dangerous in people with kidney disease, liver disease, or bleeding disorders. Women who are pregnant or breastfeeding should not use this method.

Chelation therapy is often given along with large doses of vitamins and other minerals, which may actually contribute to the processes that produce dangerous free radicals in the body. Loss of zinc can also lead to mutations in cells. For this reason, chelation therapy may actually increase the risk of cancer.

In other words, this is not something to do to your kid, except in one circumstance: if you have solid proof your child has heavy metal poisoning. Note, again, that would never be confused with autism by anyone in the slightest bit competent. It has enough side-effects, I’d make sure to get a second opinion from another mainstream doctor, and then I would make sure that the facility where it is done can respond to the life-threatening emergencies (such as heart failure) that may occur.

But, again, it doesn’t do shit for autism.

Enema – More Shit Problems

Again, related to colon cleansing, this generally shouldn’t be a routine procedure for people! It can help with constipation and it can help with getting rid of shit for a colonoscopy. Other than that, it doesn’t particularly help autistic people.

Even worse is when standard enema are replaced with – essentially – bleach. Do you really think exposing sensitive organs (the colon) to bleach is a good idea? It’s not. Even when it’s called something like Miracle Mineral Supplement (nor is MMS good ingested orally – go figure, drinking bleach is bad for you). Did I mention MMS supposedly treats cancer?

Protip: anything that treats both cancer and autism does neither; this goes double for anything that adds HIV to the mix of things it supposedly treats.

Ah, the Fascination with Shit

There’s a huge fascination with shit among quackery. There’s a lot of parents that have trouble toilet training their autistic children, so I can understand the focus on shit. But, at the same time, not being able to communicate to a person to teach toilet training does not mean that the person has a health condition in their gut. Nor does periodic bouts of diarrhea or constipation indicate general health issues – we all deal with this. But if it is frequent, definitely talk to a mainstream doctor about the condition. But you’re not dealing with autism, you’re dealing with something else.

There’s also difficulty autistics have processing sensory information and sometimes making motor movements, both of which are required for successful toilet training. Someone that is helping will know this and consider this, and not just radical diet changes without evidence of problems (other than stool).

Finally, stress messes up people’s guts. And plenty of autistic people have stressful lives, due to sensory issues, social expectations, and, sadly, some of the things people do to try to cure them. I don’t know much about toilet training, but I know that stressing out the kid doesn’t help. Go figure – stress doesn’t help with any kind of learning. Or health.

Oh, There’s More

Yes, there are other quackeries. I’m not going to get into some of the other ones now, as these were the ones that annoyed me today. Maybe you’ll see a second post later.

So What Can You Do?

In general, what you do for other kids. Feed them good food (not restricted diets only because the kid is autistic). Focus on things other than shit all the time (seriously!). Stay away from things that claim to cure cancer. Don’t think that there is some sort of secret knowledge that science and Big Pharma is hiding from you – there’s plenty of problems in our health care system and with corporate pharmaceuticals, but spreading autism isn’t one of them – and plenty of Big Pharma developed drugs are good and helpful, even life saving.

Realize there is no cure for autism. So instead of curing and overcoming, focus on ways you can raise your kid to be at the fullest of his autistic potential. Listen to him when he complains (with words or otherwise) of environmental stimulus (like sounds, tastes, etc). Try not to add to a stressful life!

Find your kid’s strengths and gifts. What does he do best? Did you know that research has shown that there are some brain functions that autistic people do really well, not just ones they do badly? Discover what is unique and wonderful about your child. Autism or not, he’s your child!

A Little Knowledge is a Good Thing?

We’ve heard it a lot.  We need more awareness.  Whether it’s racism, ablism, homophobia, or something else, it’s about awareness.  Once people understand, they’ll become decent humans.

That’s somewhat true – ignorance does cause a lot of problems.  But there’s a problem with just thinking awareness will solve it.  People who aren’t good at something often think they are – see Dunning-Kruger Effect.  Of course what Dunning and Kruger studied was areas where people already thought they had some understanding – things like humor.  Very few people are completely incompetent at humor (that’s no joke).

Ask an 12 year old who is reasonably good at math if they are good at math, although maybe not quite a genius at it.  Now ask a math professor with years of post-graduate research.  I’ll be the math professor rates himself lower.  He knows a lot better how much math he doesn’t know.  He also probably knows some really, really, really great experts in math.  The 12 year old probably doesn’t.  He probably wouldn’t even define math the same way.

But what if you ask someone about astrophysics?  Or auto mechanics?  I’m not sure, but I know in other commonly-perceived to be difficult tasks – such as chess or computer programming, people generally underestimate their skills compared to their peers – they think others are better than they are, even when they aren’t.  The key is that people focus on their own skills – if they feel reasonably competent at something, they are of course above average, while if they don’t feel competent, then they are below average.  And of course you don’t feel average about things you know nothing about – even if most people also know nothing about them.

How does this apply to disability or other minorities?  I think it explains a ton of mistreatment.  Someone who knows nothing about a minority or disability, and knows it, will probably be decent.  Why?  They’ll listen.  And since everyone with a disability or who is a member of a minority (or both) is unique, that’s important.  Lack of knowledge in this case is actually a good thing.

What happens when someone has had an hour or two of disability awareness, LGBT sensitivity training, or racial relations education?  They now know a lot more than they used to – not enough to actually be useful, but more than they did.  They know more than a lot of people do, and almost certainly more than they think most people know.  They’re feeling pretty good about themselves.

That’s dangerous.

That’s dangerous because it’s exactly then that people make assumptions.  “Oh, I know about blind people.  They want me to tell them where their food is on their plate” (they may, but they also might already know – before you spend 5 minutes explaining, you might ask!).  Meanwhile they will not think of telling the blind person, “Your bathroom curtains are open, so you’ll probably want to close them before you shower.” That wasn’t covered (again, you should ask and not assume!).  But if they asked the blind person, “Do you want any help, and if so, what can I do?” the blind person would probably let them know what they should (or shouldn’t do).

I’ve seen this with LGBT issues – if someone knows the words (What’s a demisexual?  What’s a cismale?  What does “curious” mean when someone talks about their orientation?), then they see themselves as fairly knowledgable.  But of course there’s a lot more to understanding the LGBT community than knowing definitions – people literally spend their lives trying to understand the LGBT community from both the inside and the outside of that community.  Even more significantly, if I know a man is gay, what do I know about his attractions?  It turns out, not much.  Sure, I can probably guess he’s likely more attracted to men than women in an abstract sense, but I have no way of knowing from just knowing he’s gay if he’s attracted to any specific man.  Or if he says he’s straight, that doesn’t mean he hasn’t had consensual homosexual sex.  But too often the thrill of being educated about LGBT issues hides the complexity of real lives.  Someone that knows nothing will probably be more receptive to some of the complexity.

With autistic people, what I fear most are people who have been exposed in very limited situations to autistic people (for instance, worked part time for a short time in a group home or institution).  They don’t know what they don’t know – they’ve seen only a few autistic people in only a few environments.  They’ve heard about them from others that share their primary experience of being in those environments with autistic people.  So it starts a bit skewed.  Add to that, the person now knows a lot more than they did before, assuming they knew almost nothing about autism.  They now have awareness.

Awareness isn’t the same as competence or understanding, however.  They know only a little bit.  Unfortunately, people often think they know more than that.  This goes both ways in the autism community – people generalize about adults on the basis of a child they know.  Or adults with autism, who haven’t had children, generalize about parenting when they have little experience other than having been raised by parents.  A little knowledge is a dangerous thing indeed.

If I want to tell someone about my autism, for any reason, I hope and pray that they don’t know anything about autism.  If they do, I have to figure out what they know and somehow unteach that part of it from them, or at least provide evidence it doesn’t apply to me.  That’s difficult (how can I know what they’ve been taught?).  It can be downright deadly in a medical environment – if the doctor associates autism with crazy, you may receive treatment for “crazy” while your primary complaint is ignored.  A little knowledge is dangerous indeed.

Yet, if I’m in a medical situation and the person has never heard of autism, then I’m in the position to teach them what matters for me.  That’s actually a better place to be in.  I can explain that it makes it hard for me to express that I’m in pain or localize a symptom or make appointments.  Rather than having to teach that it doesn’t mean I’m violent, don’t want to socialize, can’t participate in my own treatment, or whatever else.  It’s a lot more efficient to be the first person to tell someone.  It’s nice when I don’t have to break through the wall of “I already know about this.”

Maybe awareness is good.  But not in small doses.