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A lesson in terminology. November 10, 2008

Posted by speakingaut in advocacy, language, medical, sensory integration dysfunction.
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When a neurotypical (not just non-autistic, but completely neurotypical) person has asthma, he or she is asthmatic.

When an autistic person has asthma, it’s a comorbidity.

When a neurotypical person complains of pain, it’s probably a symptom of a disease.

When an autistic person complains of pain, it’s a because he or she is autistic, and nothing more.

When a neurotypical person wants to be left alone, he or she wants to be left alone.

When an autistic person wants to be left alone, he or she is antisocial.

What’s wrong with this picture?

(Disclaimer: I know these don’t hold 100% true, but this is an exercise in how profoundly a single diagnosis can change society’s view of a person, so bear with me.)


Oh, is it Single-Sentence Saturday again? October 18, 2008

Posted by speakingaut in medical, sensory integration dysfunction, single sentence saturday.
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The thing with sensory integration dysfunction is that even when you’re really good at managing it, one “off” thing — in this case, “I wish I’d hurry up and get sick already if I’m coming down with something” — can mess you up for the week.

Social Stories and airplane trips September 11, 2008

Posted by speakingaut in interaction, medical, social.
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One of the blogs I follow regularly is called Parent Hacks. It’s full of parenting tips and shortcuts, and while I’m not a parent, there are enough children in my life that I can use the tips. A tip that was posted today caught my eye, since it’s geared toward parents of autistic children: “‘Social Stories’ coach kids through transitions and new situations.” There’s evidently a specific way to write them, but I’d tailor it to the needs of the child or children I’m writing for.

The post also links to a collection of examples.

I remember when I was little, I was really nervous about new situations. It really helped when people explained to me exactly what to expect when, what counted as “normal” and when I should ask for help, and addressed any other questions I had. I also remember asking many of these questions several times. Considering that I started reading when I was two, it might have been easier to have things written down. (Come to think of it, I think that did happen a few times.)

I’m still nervous about new situations, of course, but it’s less paralyzing now, and the good thing is, I can do my own research now. If I go in for a medical procedure, for instance, I read up on what exactly to expect. And one of the requests I make of any doctor who treats me is “please let me know what you’re going to do and what it’s for before you do it.” Nothing turns me off from a doctor faster than being surprised by something simple.

A different example: When I was six or seven, I went to Disneyland with a close family friend. While I’d been on airplanes before, it had been when I was a baby, and if I remembered, the memories were spotty at best. When it came time for me to leave, I was terrified. I had a basic idea of what would happen, but nothing measurable or specific. It certainly didn’t help that when the friends I was with showed me a map of the United States, they joked around by pretending our route took us on a looping course around the country, but I couldn’t have done anything about that.

(No social story could have prepared me for losing one of my favorite shoes in the Pacific or having the plastic toy sword I’d bought at the Pirates of the Carribean gift shop confiscated at airport security, either, but that’s another story.)

Of course, now I understand what’s going on and what to do in what situations, I am the family’s second most fearless flier. I’ve been in one of the world’s largest airports, in a country where I don’t speak the language (aside from a few choice words I can’t repeat here), on a flight that landed twenty minutes late, with only the vaguest of instructions on where to go next, and I’ve made it to the rendezvous point on time.

But the beautiful thing about liking to know what’s going to happen before it does is that I was able to pay it forward. One time, I was flying solo. The plane I was supposed to be on had just landed and its passengers were disembarking, and the little boy who was across from me at the gate kept asking his mother what was going on. His mother kept saying she didn’t know.

So I braved the whole “talking-to-strangers” thing, and once I got permission from his mother, I told the boy that the plane had been full of people who wanted to come here, and now that it was empty, we needed to wait for people to clean it. I told him that they were going to put the checked luggage on the plane and call the passengers up in groups, and that once he was in his seat, he should put his seatbelt on and listen to the instructions the cabin crew gave. I even told him he could wave at the pilot on the way out of the plane.

The kid’s response?

“Oh. That’s cool.”

So yeah. This works with (presumably) neurotypical kids, too. As a rule, knowledge reduces fear.

Even if you don’t have time to write stories yourself, there are books already existing that are extremely helpful. I remember reading a series of books by Fred Rogers that dealt with first experiences, and the Berenstain Bears are classics by now. (I have no knowledge of what the newest ones are like, but I have fond memories of the ones that were in print when I was a child.)

In conclusion: Man, that’s a longwinded way to say “ooh, these things are a great idea.”

Argh. August 15, 2008

Posted by speakingaut in medical.
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I have nothing to say today except that I hate my sinuses and the feeling is mutual.

Seriously. I’ve had perhaps three colds that didn’t become sinus infections since I was four years old. They’re just that rare for me.

If I had a choice between curing this, my SID, or my PDD-NOS, I’d go for the sinuses.

(That said, my frequent sinus infections do give me the chance to joke that my inner neurotypical — the one that’s trapped inside me — is trying to escape through the vents again.)

Done whining now, I promise.

The first of the obligatory vaccine posts. August 9, 2008

Posted by speakingaut in medical.
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A post I read on another blog induced me to write this. I may not like the person who wrote the original post, and he and I rarely see eye-to-eye, but this particular post is one I agree with 100%, so I’m going to give my take on it.

Every essay needs a thesis statement (at least, that’s what I learned in 6th grade English), and so mine is this. Even if you don’t read the rest of the post, read this:

Vaccinate your children.

There are very few valid reasons not to do so. Let’s go through what counts as valid and what’s just quackery.

Valid reasons not to vaccinate:

– Legitimate medical reasons. I personally react badly to the hepatitis B vaccine (it’s seizuriffic!) so I never got my third hep-B shot. There are people with allergies, or in whom certain vaccines can trigger Guillain-Barré syndrome. There’s no point in any medical treatment if the treatment causes more pain than it relieves.

– Religion. I’m not religious myself, but I understand and appreciate the role it plays in the lives of many people. The number of adherents to religions that forbid vaccination is small enough that I see no reason to force these parents to vaccinate. However, I am vehemently opposed to parents who lie about their religion just to avoid vaccinating their children. If the government can require affidavits from church leaders for people to secure conscientious objector status, it can verify the religious status of parents who cite religion as a reason not to vaccinate. That it doesn’t is a gross oversight. (I might take flak for this, but it’s what I believe.)

Invalid reasons not to vaccinate:

– Autism, and believing vaccines cause it. Seriously. The “link” between thimerosal and autism has been debunked many times.

This isn’t to say that putting mercury in vaccines is a good thing; it simply means that immunity to these diseases is worth exposure to trace amounts of thimerosal, at least until such time as vaccines can be made without it.

Incidentally, the half-life of ethylmercury in the human body is roughly one-tenth of the half-life of methylmercury, which is the toxin on which most studies on the toxicity of mercury have been done.

Seriously, though. Weighing the risks and benefits:
Measles is ugly, painful and deadly. It leaves the body wide open to pneumonia and other infections. Leaving aside these secondary infections, measles has killed 200 million people in the last 150 years. People still die of it in the United States, at that. All it takes is one carrier to bring it into a group of non-immune people, and boom.
Diphtheria is even more brutal. It attacks the nervous system directly, and the toxins it creates induce cardiomyopathy and peripheral neuropathy. In 10 percent of diphtheria cases, the throat swells, often to the point where the patient can no longer breathe. Cutaneous diphtheria does this, which I should hope doesn’t need an explanation as to why it’s bad. And it still kills people. Rates of vaccination are much lower in some countries than in others, and once again, all it takes is one traveller who thinks it’s just a cold.
Pertussis: It’s the only vaccine-preventable disease that is killing more people in the United States year by year, and it comes with one of the most terrifying sounds one can hear from a child. It causes brain damage, internal bleeding and convulsions, and leave the body open to secondary infections such as pneumonia.
Poliomyelitis: Eats the central nervous system. Literally. When it isn’t deadly — and even now there’s no cure — it can cause brain damage, paralysis, nerve damage, and more. When the Salk vaccine was released, there were very few people who refused it, despite its dangers, because polio is Just That Bad. And then there’s post-polio syndrome, which is beginning to manifest in adult survivors of the disease. I have immediate family members who have survived polio, and one in particular who is lucky to walk today. He suffered permanent nerve damage in his hands and legs, and is suffering chronic pain even fifty years after contracting it.

There are plenty more, but I’m going to leave it at these for now. They’re bad enough.

In short, if you don’t take reasonable measures to ensure the immunity of your children just because you’re afraid it will make them autistic (especially since it won’t), you’re saying that you would prefer having a dead child to an autistic one. You are saying that it’s okay for children to die horribly like this just as long as they’re neurotypical.

So think long and hard about that, and then go apologize to your children if you haven’t vaccinated them.

(And don’t get me started on Hannah Poling. That was mitochondrial disease.)

-“Big Pharma” conspiracy theories. Look: it’s not in the best interests of pharmaceutical companies to eradicate disease. If nobody got sick, they’d be out of a job. And yet, here they are, working to ensure that these diseases go the way of smallpox. (Does anyone here miss smallpox? Raise your hand if you do. Come on, don’t be shy. Bueller? Bueller? Anyone? … I thought so.) I’m glad to mistrust pharmaceutical companies any other time, but not for this.

-“I’m afraid the HPV vaccine will turn all our girls into little tramps!” — Yeah, in the same way that the Hepatitis B vaccine turns children into IV drug users.

-“Everybody else in her class has been vaccinated, so I really don’t need to.” — Tell that to the kids whose stories I’ve linked above. The daughter of Colorado’s last governor contracted pertussis because of this. Herd immunity only works if enough people in the world are actually immune. Unless she goes to school in a hermetically sealed biosphere, suck it up and do it.

There’s probably more that I’m forgetting, on both sides. Feel free to list them in the comments.