Friday, June 25, 2010

The Politics of Autism

Webster's defines community as "a unified body of individuals." Going by that definition, the Autism Community isn't a community at all. In fact, the Autism Community is quite divided. A quick Google search is all that's needed to prove it. There are websites that discuss recovery and cures versus support and acceptance, genetic versus environmental causes, and even whether or not Asperger's Syndrome should be classified as an Autism Spectrum Disorder (from here on out referred to as ASDs). There are as many Facebook groups as there are viewpoints. Autism Speaks maintains a huge presence on Facebook, but there are also smaller groups such as Autism Acceptance, Not Miracle Cures

There are two subsets within the Autism Cure Movement. First of all, there are those who believe ASDs are caused by a genetic component. They approach finding a cure from a scientific perspective. Autism Speaks is probably the most well-known of these organizations. Autism Speaks funds research projects such as the Autism Tissue Program and the Autism Genome Project, while fundraising through efforts such as Walk Now For Autism and soliciting donations through partnerships with companies such as Toys 'R' Us. A recent study focused on genetic variations in people with ASDs. Other studies have focused on neurons and brain function. Treatments tend to be educational, including applied behavior analysisspeech and language therapy, social skills therapy, occupational therapy, and sensory integration therapy. Prescription medications, such as antidepressants and antipsychotics, are sometimes used as well.

Outside the mainstream, but still advocating for a cure, you have the so-called "Mother Warriors" who hang on Jenny McCarthy's every word, support Andrew Wakefield no matter what, and have probably tried every alternative therapy for Autism known to man. Groups such as TACA (Talk About Curing Autism) and DAN! (Defeat Autism Now!) believe strongly that ASDs can be linked to environmental triggers such as toxins in vaccines and preservatives in food. They advocate "greening" vaccines by removing toxins such as thimerosal (removed from all vaccines except the flu shot in 1999) and aluminum and following strict diets such as GFCF (Gluten-Free/Casein-Free) and GAPS (Gut and Psychology Syndrome). I recently read The Autism Book by Dr. Robert Sears, and much of the book was dedicated to information concerning alternative diets, various nutritional supplements, and other alternative treatments.

At the opposite end of the spectrum (pun intended), stands the Autism Rights Movement. These champions of neurodiversity abhor talk of a cure for Autism, demanding acceptance for what they deem is simply a "difference" rather than a disability. They view themselves in a manner similar to the Deaf Community. They see the need for a cure as an outsider's perspective, in which ASDs deviate from the norm and therefore must be "fixed." Aspies For Freedom organizes an annual Autistic Pride Day on June 18th and is campaigning to have Autistic people recognized as a minority status group.  Ari Ne'eman, who was just appointed to the National Council on Disability, has raised concerns that focusing on a cure for Autism will lead to prenatal tests that will, in turn, lead to an increase in the termination of fetuses with Autism. Ne'eman, like many others within the Autism Rights Movement, has Asperger's Syndrome. Critics, especially parents of lower-functioning children with Autism, argue that people with Asperger's Syndrome and High-Functioning Autism shouldn't represent the entire spectrum.

So where does this mom of a seven-year-old Aspie stand on the issue? I'm not sure. I agree with a little of all three positions--how's that for being diplomatic?  ;)  The evidence for a genetic cause is overwhelming. Literally. Science has never been my strong suit, and I think I could actually feel my brain hurting after two hours of reading studies last night. But even though no link has been proven scientifically, I can't help but wonder about environmental factors. I don't believe vaccines and preservatives cause autism, but I have wondered if they somehow trigger it in children who are genetically predisposed to it. I try to feed my children healthy, natural foods, just because I believe that all of those preservatives can't be good for them, regardless of whether they cause or trigger autism or not.

On Facebook, I often feel left out of most conversations regarding Autism, which is ironic, since I joined those groups to feel connected to other parents of children with Autism. On Autism Speaks, whenever anything at all is ever said about Asperger's Syndrome, there's always someone who lets it be known how LUCKY parents of children with Asperger's should feel, because HIS/HER child has SEVERE Autism and he/she WISHES his/her child was high-functioning enough to ONLY have difficulty making friends. We're not supposed to complain, don'tchya know, because it could be SO MUCH WORSE. I actually feel sorry for people with that point of view, because it's pretty obvious that they see their children as broken, as if there's some "normal" child hiding in there underneath all that Autism. Yeah, so I pretty much don't even participate in that group anymore, even though I keep it so I can read the links that are posted. I've found a couple of good blogs that way, like this one and this one. But there was another group that I removed myself from altogether, because I was offended by this: "When people make the decision not to Vaccinate their children, they are essentially saying that they would rather risk having a dead child, than to have a child with Autism. I think that speaks volumes about the Parents." Um...hello? That's a little extreme, isn't it?

When Connor was a baby, we vaccinated completely on schedule. As first-time parents, we didn't know we had any other choice. As he approached his one-year checkup, I started to hear things about the MMR. Much of it was misinformation, along the lines of "Don't give him the MMR! It has mercury in it that will give him autism!" (The truth is, the MMR has never contained thimerosal.) I started looking into the issue and made the decision to spread out Connor's immunizations from that point on and with my other two children, as well. After careful research, there were a few we skipped altogether. I weighed the risks and benefits of each immunization and made what I think was an educated decision, with the support of the kids' (new, as I switched from the doctor Connor had as a baby) pediatrician.

When Connor was first diagnosed, I went through the normal grief process, and that included beating myself up and second guessing every decision I had ever made. Was it because we allowed him to have all of those immunizations? Was it because I only breastfed him for three months, or because we switched him to soy formula, after he constantly threw up the milk-based formula? Was it because I didn't eat healthy enough when I was pregnant with him, or because I had post-partum depression? Was it because we followed the pediatrician's advice and let him cry it out for an hour every night for five nights (until we just couldn't stand it and decided it was stupid to do something that was so difficult for everyone involved)? Finally, I realized that we may never know. And I'm okay with that. It wouldn't change anything even if we found out tomorrow what caused our son to have Asperger's Syndrome.

As for a cure, I honestly don't think much about a cure. Maybe a cure would be more important to me if my child were low-functioning, but then again, maybe not. I don't think of autism as a disease. In some children, it can be a disability, sure. In others, perhaps it's just a different way of looking at things. But when I think of cures, I think of childhood cancer and muscular dystrophy. My cousin has Down Syndrome. I want him to have every available opportunity to be successful to the best of his ability, but I've never thought he needed to be cured. I feel the same way about my son with Asperger's Syndrome. I asked Connor not too long ago, if the doctor could give him a medicine that would make him not have Asperger's anymore, would he want to take it? He said no, that even though he has a hard time making friends "and stuff," it's just who he is. And if that's how he feels about it, that's good enough for me.

Friday, June 18, 2010

Hell of a Day...

Actually, it started yesterday. I took the kids to the YMCA pool for the first time this summer. Now, keep in mind, I did this frequently last summer, and they were all one year younger. But even so, something has changed between now and then that has apparently made it more difficult for me to do this by myself. Everything was going okay until it was time to change them out of their swimsuits and into their clothes. I had called ahead of time to ask about bringing Connor into the women's dressing room with me, because last year some of the girls had an issue with it. Well, I pulled the autism card and told the director that he needs my help getting dressed. Which is true, but I still hate having to do that. Anyway, I was told that it would be okay as long as I took him into one of the stalls--either the toilet stalls or the shower stalls. I chose the handicapped toilet stall because it had the most room, and I swear it was 180 degrees in there. So I'm taking Connor's swim shirt off, Dylan is impatiently waiting for me to help him ("Mommy, I'm tiiiiired of being wet."), and Addi says, "Mommy, I have to peepee!" And I'm ready to throw up my hands and quit. We somehow got through it, with me taking lots of deep breaths and trying to ignore the sweat dripping down my forehead. Other people do this. Why can't I do this without having a nervous breakdown?

So Michael got home from work a little early, at which point storytime was completely forgotten about because who needs Mommy to read a story when "YAY! Daddy's home!", and reminded me that he had a Wildlife Club meeting that night. Fan-tastic. I made the kids dinner and gave them baths, and it was then that I noticed Dylan's cheek looked a little puffy. Well, last time his cheek looked puffy like that, it turned out he had a humongous amount of impacted earwax in his ear. It took two nurses holding him down for the doctor to get it out. Dylan was screaming bloody murder the entire time, and Addi was covering her ears and shaking. It was awful. It didn't help that we had to see Dr. B that day because Dr. S was off, and Dylan isn't used to Dr. B and is much more comfortable with Dr. S. Anyway, I tried to get him to put eardrops in his ear (After that happened, Dr. B told me to buy one of those over-the-counter earwax removal kits.), but he wouldn't let me anywhere near him with it. I told him he'd have to go to the doctor, which he wasn't happy about, but he still wouldn't let me put the drops in, so I told him it was bedtime.

I woke up this morning still thinking it was earwax and ready to call the doctor. Until he woke up. The entire left side of his face was swollen, and he said it hurt. I thought maybe he had been stung by a bee at the pool or that something bit him. I called the doctor's office and made him an appointment. Thank the Goddess for my mother-in-law, who let Connor and Addi stay with her! When we got there, Dr. S looked him over and said she didn't see anything out of the ordinary with his ears or his throat, but she thought his gums looked swollen. She thought it was an abscessed tooth, so she had me call the dentist from her office. She wanted him seen today, and if our dentist couldn't work him in, she was going to call one she knows. Luckily, our dentist was able to see him at 3:00. We had a little time, but not enough time to go back home (our dentist is an hour away, in Lexington), so I took Dylan to get ice cream.

The dental assistant looked in Dylan's mouth but said she couldn't tell what was causing the swelling, so she wanted to wait for the dentist. While we were waiting, Dylan decided his cheek felt better and that we could just go home.  ;)  Dr. C looked in Dylan's mouth and nothing jumped out at him, so he decided to take an x-ray. After looking at the x-ray, he still didn't know what could be causing the swelling. He said the tooth and gums looked normal, and that he was stumped. He referred us to an oral surgeon in Irmo, who wanted us to come right away. Back over the dam we went, in record time. Yeah, I was speeding just a little, but we had to get there before the office closed. I didn't want to have to wait until tomorrow.

Well, Dr. W took one look at the x-ray and said he didn't think it was dental at all. He wanted to talk to Dr. S, so I gave him her number, but she had already left for the day. He talked to her nurse, and when he came back, he suggested that Dylan has an infection, most likely caused by bacteria entering the sinus cavities. (I looked it up on WebMD, and cellulitis is what he was describing.) He prescribed Augmentin and told us to follow up with Dr. S. I talked to the nurse, and she said if the swelling increases or if he starts running a fever, take him to the ER immediately. If the swelling goes down tomorrow, the follow-up can wait until Monday, but if the swelling doesn't go down, I have to take him tomorrow. Augmentin is good for penicillin-resistant bacteria, so it should work regardless of whether the cellulitis is caused by Staph aureus or Haemophilus influenzae. (I'm thinking Staph aureus since he's up-to-date on his Hib shots.)

I swear, I felt like we were in an episode of House today! "It's NOT Lupus!" It's kind of a scary feeling when the doctors don't know what's wrong with your child. But after reading the information on WebMD, I feel better, because if it is cellulitis, the Augmentin should clear it up in a few days. I know it's easy to make fun of WebMD and people who use it to self-diagnose, but I'm really thankful for the technology of the Internet to help me better understand a doctor's diagnosis. Because we all know the doctor is in and out in less than five minutes and doesn't have time to answer questions.  :::eyeroll:::