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 analysis, speech 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.

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:::

My Sweet Pea

We've been calling Dylan "Sweet Pea" ever since he was born. The nickname has taken on new meaning as he has gotten older and become our most difficult child. I hate using the word "difficult." Maybe I should say "spirited" like Mary Sheedy Kurcinka advises. There's A LOT of Dylan in Raising Your Spirited Child. He's feisty and stubborn and strong-willed, and I think those are wonderful qualities that will serve him well as an adult. The challenge with Dylan has always been in figuring out how to discipline him without squashing his spirit. Because sometimes, I just need him to put on his shoes, ya know?

It's Dylan that makes me have to fight that urge to spank. In fact, I tell him from time to time that it's a good thing for him we don't spank. My husband tells me that I let Dylan push my buttons. That's probably true to some extent. I'm not always good at choosing my battles with him, because sometimes it feels like everything is a battle. I'm becoming a lot better at recognizing when I need to give myself a timeout, though. I used to yell at him a lot, which is not something I'm proud of, but I'm working very hard to do better. I'm not perfect, but nine times out of ten, when I feel that urge to hit him, I step away instead of yelling. Wow. That looks terrible in print. That's a terrible thing to admit, that I feel the urge to hit my child, that I'm guilty of yelling at my child.

You have to understand where I'm coming from, though. My family puts the fun in dysfunctional. I'll spare you the details, but suffice it to say I've had a lot to overcome. My parents divorced when I was eight, and my father wasn't around at all. My mother mostly just screamed at me, but she was abusive to my sister, and her excuse to this day is that my sister "pushed her buttons." I read recently that when you grow up in a family like that, you can go one of two ways. You either decide to prove that you can do it better, or you repeat the cycle because it's all you know. I am constantly trying to do it better. The biggest compliment someone can give me is to say that I'm nothing like my mother. I've been in therapy in the past (don't laugh, it really helped!), and I've had to come to terms with the fact that even though my knee-jerk reaction is to get angry and spank and scream, I don't have to give in to that. Because I can do it better. And I like to think that I am.

I've been sick with some sinus thing this week, and yesterday Dylan told me twice, "Mommy, I'm sorry you don't feel good." Last night, as I was lying beside him in our bed, wishing he would just stop talking and go to sleep so I could go watch Criminal Minds, he said, "You should take some of my medicine, Mommy. It'll make you feel better." (Dylan has had some sniffles this week, too, and I've been giving him Children's Benadryl.) And I just smiled. Because that's Dylan's M.O. Just when I'm so frustrated with him I could scream, he says something sweet or empathetic or gives me a hug or tells me he loves me. Then I melt and forget why it was I was so frustrated with him to begin with. He does it so often and so effortlessly that we call it "being a Sweet Pea."

I am a believer in the theory that we are here on this earth to learn things. I believe that, for whatever reason, my purpose in this incarnation is to learn how to be a good mother. Connor was a fussy baby. He cried all the time, wouldn't sleep anywhere but beside (or on top of) me, and wanted to be held a lot. It's because of him that I found Dr. Sears and Attachment Parenting. If Connor had been an easy baby, I wouldn't have sought advice outside my circle of friends and family, who, of course, told me I was spoiling him and to just let him cry, which felt wrong to me. Connor having Asperger's makes him easy to discipline because he is a rule-follower. So now that my kids are out of the baby stage, I think I was given Dylan so that I would continue on my journey of figuring out a better way to parent. Dylan makes me a better parent because he forces me to come to terms with my past and do it better. Now I'm left wondering what challenges Addi will throw my way...ha!

I Am Woman, Hear Me Roar!

Since when does being a feminist mean you have to act like a man? Feminists aren't only found in courtrooms and on Wall Street. I am a feminist. I am not oppressed. This is the path I chose, and isn't the choice what being a feminist is all about? Women are oppressed when they are given no options. Women are oppressed when they aren't allowed access to an education. Women are oppressed when they are forced to hide behind veils in mixed company. Women are oppressed when they're told they can't birth in the position they want. Women are oppressed when they're told they can't nourish their babies in public. Women are oppressed when they're lied to by formula makers who convince them to go against nature for the sake of convenience. Women are oppressed when they're led to believe they have to fulfill a man's role in the workplace and resume a woman's role at home. Women are oppressed when they are told by doctors that their bodies have failed them. Our bodies have not failed us. Society has failed us. I am not oppressed. I embrace the feminine. I am a feminist. I AM a goddess!

Awesome!

I've started reading a really wonderful blog titled "MOM-Not Otherwise Specified." As I'm new to blogging, I hope I'm not breeching etiquette if I post the link to one of her blog entries here. This is just such a perfect way to describe ASDs, I had to share.

A hair-dryer kid in a toaster-brained world

Gotta Take the Bad With the Good...

Addi was tested for preschool today. She'll enter the 3-year-old Montessori program in the fall, if she gets in. Depends on how many spots they have and how many 3 year olds signed up. She's so ready for school. She's outgoing and sociable, and she's pretty much potty trained, except at night. She still has an occasional accident, but I have no doubts she'll absolutely be fine by August. It's only half a day, or I wouldn't send her. Dylan will be in Kindergarten all day, and I think it'll be good for her. She charmed all of the teachers, who couldn't get over how cute she is. And she informed me that Newberry Elementary is now her school, not Connor's. What a little diva she is! When I was putting her to bed, we were talking about her day, and I said, "Addi, you had a pretty good day today, huh?" And she said, "YEAH!" LOL

After storytime at the library today, I took the kids to the park since it was such a nice day. And since it was such a nice day, it was pretty crowded. All the kids played nicely together, though, and I thought things were going pretty well. Then I heard a parent yell at Connor. Apparently, Connor thought the boy needed help on the swing--he was young, probably about the same age as Addi--and Connor was going to push him. The mom, of course, was afraid her son was going to fall out of the swing, and she might have thought Connor was some bratty kid who was trying to take his swing. Connor became very upset, though, and he had to do his breathing exercises to calm down. I talked to Connor and gently reminded him that next time it might be a good idea to ask, "Do you want me to push you?" A few minutes later, I went to talk to the mom and let her know that Connor wasn't trying to be mean. And for the first time EVER, I pulled the autism card. I let her know that Connor has autism and didn't know he should ask first. She was very nice and understanding, and I'm sure I would've reacted the same way had the situation been reversed. But man, thinking about the look on Connor's face and how hard it was for him to calm himself down...my heart just aches for him.

And so I can end this on a positive note, Connor was given extra recess time yesterday. One of the boys in his class had resource during recess time, and Connor's teacher chose him to stay and play with the boy for a few extra minutes. He was so excited about it, and I could tell when he was telling me about it that he was very proud. :)

ASDs and 504s and IEPs, oh my!

This is my 6 1/2 year old son, Connor. The photo was taken on Christmas morning 2009. The kids had opened all of their presents and were starting to play with their toys. In the photo, Connor is stimming. It's what he does when he becomes anxious or overly excited or overstimulated. I didn't intentionally try to capture him stimming. I took the photo because he's playing with one of Dylan's gifts. I also took a picture of Dylan playing with one of Addi's gifts, and one of Addi playing with one of Connor's gifts. I liked that they were all playing with each other's brand new Christmas presents, and no one was screaming or snatching toys out of hands, yelling, "That's mine!"

Connor has been on my mind a lot lately. Something is going on with him, and I don't know what it is. His meltdowns are becoming more frequent. His teacher has noticed him stimming more at school. He has been increasingly inflexible at home, more demanding when he can't have his way about something. I feel like if I just knew what it is, I could fix it. But maybe there's nothing to fix. Maybe there's no one big thing that has triggered his behavior. Maybe this is just life with Aspergers.

When he had a psycho-educational evaluation last March to see if he qualified for special services, he was doing extremely well. Academically, he's never had any difficulties, so it wasn't surprising that he was a little above grade level. He seemed to be getting the sensory stimulation he needed from the Montessori environment itself. His visits with Dr. Lesley had paid off in that his social skills were improving. He had even started playing with the other children sometimes. It was no wonder that he didn't qualify. So he was given a 504 plan instead of an IEP, just a few accomodations that he needed in the classroom: lined paper, fat pencils, that sort of thing.

He's not doing as well now. He tells me that he feels weird. Other kids want to know why he "does that" with his hands, and he wants to keep it a secret that he has Aspergers. He refuses to do 15 minutes a day of writing because he says his hand gets tired. Yet he draws all afternoon long. He comes home and screams at Dylan because Dylan doesn't want to play World 4-5 on Super Mario Brothers eight times in a row. Now, in addition to his hand stimming, he stims vocally, making these noises that remind me of street rappers. One of the parents in his class heard him and made the comment that Connor was "be-bopping" and that maybe he'll be famous one day. I faked a smile.

At that meeting last March, Connor had not yet been diagnosed with Aspergers. That would not come until two months later, during the last week of school. His diagnosis at the meeting in March was still PDD-NOS. After he was diagnosed with Aspergers, the Hall Institute recommended he have an IEP. I didn't push it, as he seemed to be doing okay with just the 504. Now, I think I need to ask to have him re-evaluated. I'm not sure if I can do that, but I really think he needs more than the 504 can provide him with. He needs OT. He needs a quiet place to go when things get to be too much for him.

Not for the first time, I want to pull him out of school and keep him from having to deal with being different, but I know he can't live in a bubble for the rest of his life. I've had parents of severely autistic children tell me (in online forums) that I'm lucky my kid can communicate, lucky he can tell me he loves me, lucky he's not locked away in his own world. Maybe I am. But is he? Is he any better off, being aware of the fact that he's different? Wanting to fit in and feeling like he never will?

Interesting Correlation

I'm finding that there's an interesting correlation between my developing education philosophy and my parenting philosophy. After completing a chapter on education philosophy in one of my classes, I have to say that I identify more with student-led teaching, specifically progressivism. In parenting, I strongly believe in attachment parenting, child-led weaning, positive discipline, no spanking, etc. I just thought that was kind of neat.

Time...

Where does the time go? Each day, I wake up and have all of these wonderful Waldorf-inspired ideas about activities to do with Dylan and Addi. We'll read some fairy tales, recite some daily verses...maybe I'll print out some coloring pages to go with the fairy tales, or maybe we'll do a craft. We can dress up with the play silks and costumes and act out the fairy tale, and maybe we can play a game, too!

Then I start doing my schoolwork, to get it out of the way so I can devote the rest of the morning to the kids. :::sigh::: By then, we're lucky to get through reading the fairy tales before it's time for lunch and then time to pick Connor up from school. I give Connor some downtime, then let him read to me and try to decide if it's worth the battle to get him to do his daily 15 minutes of writing (but they tell me he doesn't qualify for OT...yeah, whatever). Time for dinner, baths, and bed, and I realize I never got around to that craft project.

I try to assuage my guilt by telling myself that I'm doing this for them, that we'll all be better off after I graduate. But I still feel like I've let them down, a little. I fantasize about homeschooling, then I head off to bed, grabbing a little precious sleep before I get up and do it all over again.