Life on the Spectrum

Archive for April, 2011

Scratchy Sweater Syndrome

One of the difficulties in diagnosing developmental problems like Asperger’s is that while there are symptoms listed in the DSM, they aren’t really very concrete. They can be terribly vague, and very much open to interpretation.

Take sensory problems as an example. Perhaps a child dislikes scratchy sweaters. Well hell, who likes scratchy sweaters? you might ask. Is there a disorder called “scratchy sweater syndrome”? Of course not. I’m sure there are people who will rush their child off to a doctor or a child psychologist at any little sign or symptom; the drawback of increased awareness of disorders like Asperger’s or other sensory or developmental disorders is that there are people who, like hypochondriacs, will suddenly start fearing that they or their child have a disorder (is there hypochondria by proxy?). Or a well-meaning professional with a little bit of training will become like the medical student diagnosing him or herself and everyone around them with every disease in the medical textbook. This child dislikes his or her sweater? He/she must have a sensory disorder! I know that when I first became aware of Asperger’s, I wanted to diagnose everyone around me with it.

This is when the parent, or teacher, or psychologist has to determine whether a child disliking a scratchy sweater is simply a normal child who has a normal dislike for scratchy clothes, or whether there is something more. Does the child have other clothing sensitivities? Is he constantly pulling at his clothes because he finds them uncomfortable? Is he so picky about what he is willing to wear that getting him dressed to go to school can trigger a complete meltdown?

There are skeptics, however. There are people who will say something like, “If the child is that badly behaved that he’ll throw a tantrum over a scratchy sweater, then there’s nothing wrong with him; there’s something wrong with the parents. Just make him wear the damn sweater already.” Or they will point out that disliking a scratchy sweater is, generally, pretty darn normal for both kids and adults, so how can that possibly be part of a sensory or developmental disorder?

I heard things like this often when I was growing up. Not the bad parenting part, but the “make her wear the sweater already” part. I hated a lot of the clothes that I was forced to wear as a kid. My mother wanted me to “look like like a girl” and I was forced to wear blouses with annoying lacy collars, dresses made of horridly uncomfortable polyester fabric (hey, it was the seventies), and nylon stockings.

Oh, how I hated nylon stockings. But girls didn’t wear trousers to go to church. Not in my family, anyway. I loved summertime because I was allowed to wear skirts without stockings. I loved the freedom of bare legs.

Clothes weren’t my only sensitivity, though. My biggest sensitivity was noise. I had, and still do have, hypersensitive hearing. To make things worse, I lived with two extremely hard-of-hearing parents. This did not help me learn voice modulation, something Aspies already have trouble with. I had to almost yell to be heard in my house, and both my parents talked loudly. I still get told not to yell when I think I’m talking in a normal voice.

Strangely, in such a noisy house, I had to learn to be quiet, because my dad worked shift work. When he worked the graveyard shift, everything had to have the volume turned right down, and it was very hard for me to make the change from “always loud” to “always quiet.” I was never very good at it. Sometimes I think I was born loud. It’s that voice-modulation thing again.

The common refrain heard around the living room when the TV was on was “Turn it up!” I don’t think my mother even bothered to wait to hear how loud it was. As soon as the TV was turned on, my mother would say “Turn it up!” I never could sleep late in the morning. My parents would turn on the “Broadcast news” channel (a text crawl of the day’s top news stories) with the volume turned up to their normal TV-watching level, even though the only sound from that channel was extremely annoying elevator music. That music was background noise for their morning — they didn’t even notice it — and it was impossible for me, the one with hyper hearing, to tune it out.

But just like the kid is supposed to wear the scratchy sweater no matter how much he dislikes it, I was (and still am) expected to put up with noise. If my next-door neighbour has his stereo on too loudly for my liking, I’m supposed to tune it out. (I cannot tune out stereos. It is impossible for me.) If I go to a parade and the local radio station is handing out noisemakers to the children lining the street, I’m supposed to just accept it. If I go to the library and kids are playing video games and yelling out their score to their friend on the other side of the library every five minutes, I’m supposed to think of it as “happy noise.”

I’ve been driven out of stores by the in-store music. If I dare to complain, I’m told that “It’s great music!” and this is apparently supposed to make me like it. I sometimes wonder how much money music stores lose not from people downloading music, but from people who go into the stores intending to buy something, but leaving because they couldn’t stand the in-store music. I know I’d much rather shop online than shop in a store where I’m being pummeled by rap music.

Today I went into a store intending to purchase two DVDs (they were having a two-for-$20 special) and an iPod case. Instead I bought nothing, because I was driven out by the loud, pounding rap music being played in the store.

But I am expected to put up with it. No one else has a problem with it (wanna bet?), so how could I possibly have a problem with it?

Back to the scratchy sweater. Probably nine times out of ten, the kid who hates the scratchy sweater is just a kid who hates a scratchy sweater. There’s no need to send him (or her) to a doctor to try to diagnose him or her with a disorder of “scratchy sweater syndrome.” But one time out of ten, it’s not just the scratchy sweater. It’s the scratchy sweater on top of a whole lot of other things that can add up to a child (or an adult) with some form of sensory and/or developmental problem.

Regardless, I personally think that no one, Asperger or neurotypical, should be forced to wear scratchy sweaters.

Vaccines and Ignorance

For many years, people have (wrongly) associated autism with vaccines. This is mainly because one man, who wanted to make money by suing vaccine manufacturers, noticed a correlation (not causation) between the age that autism symptoms usually appear and the age that most children receive their first vaccines.

This theory, which has been fully disproven by medical evidence, has a strong supporter in a former Playboy model named Jenny McCarthy. When her son showed symptoms of autism (it later turned out he was misdiagnosed) she wrote a book about how terribly evil vaccines are. She also supports the very dangerous, sometimes deadly therapy called chelation to “cure” autism. Some of my Aspie friends call her “Anti-Vax Barbie.”

Today I noticed that someone I follow on Twitter, @genosworld, sent a Tweet about how “Jenny McCarthy steps out for autism awareness.” After I determined it was not apparently a joke, I Tweeted back to them “You’re kidding, right? Jenny McCarthy and autism awareness are a contradiction in terms. She’s the enemy of autism awareness.”

Their response? “I’m sorry you feel that way.”

I responded to them: “Perhaps you should familiarize yourself with Jenny McCarthy’s autism misinformation before you act so condescending.”

They asked how they were being condescending.

I told them that saying “I’m sorry you feel that way” is not, in fact, being sorry at all. Instead, it is blaming the person for being offended, rather than apologizing for being offensive, and I told them that Jenny McCarthy spreads lies about vaccines and autism.

Genosworld responded that I should not attack someone who is so “supportive” of autism charities and donates money to them.

I told him/them that telling people not to vaccinate their children is not at all supportive of or helpful to autistic people.

They said that I could unfollow them if I wanted, because they were not going to stop talking about Jenny McCarthy. So I unfollowed. I asked my followers to please tell @genosworld how dangerous Jenny McCarthy is, but I don’t know if any of them have done so yet.

It makes me sad that someone would listen to a Playboy model rather than to medical professionals, but I’ve been reading stories about the anti-science movement in the U.S. and the “dumbing-down” of America (I hope it hasn’t spread to Canada yet), and how science teachers do not, in fact, want to teach science but would rather teach the Bible, so I guess I should not be surprised.