Diss research makes me teary-eyed

So I'm writing this diss chapter on pedagogy, advocating for practices in the writing classroom that embrace neurodiversity. I was dealing with research on the writing practices of students on the autism spectrum, supposed-experts arguing that because of the "mindblindness" of people with autism, they are oblivious to the perspectives of others and therefore do not appeal to audiences or include background information or transitions. I, of course, wasn't happy with the over-simplification of mindblindness, so I looked further.

I found compelling research that indicated that rather than mindblindness, people with autism are overly sensitive to the world around them . . . so much so that at times they have to shut down just to survive. Neuroscientists Henry Markham, Tanis Rinaldi, and Kamila Markram call this Intense World Syndrome.

Strings of articles led me to research on the limbic system and the amygdala. This is the area of the brain responsible for memory, emotion, and fear. Oh, and smell. (Odd combination, it seems, but ever notice how smells trigger memories? I suppose that in earlier stages of our evolution this was important for finding a mate . . . so memory, emotion, and smell do fit together if you think about it.)

People with autism have amygdalas in overdrive, hyperactive compared to a typical person. Memory, emotion, and fear . . . intensified. Imagine remembering everything and feeling the emotions and fears related to those experiences far more intensely than a typical person would. It's not just that people with autism remember a lot, which they do. The way memory modulation works in our brains is that emotional arousal solidifies our remembering of an event. The greater the emotions, the more we remember something. Thus someone like Daniel Tammet can remember pi up to the 22,514th digit because he has an emotional attachment to every single number.

But . . . think of all the things that suck in life. The dog that barked and scared you. The seatbelt that was too hot and burned your hand when you tried to fasten it. The teasing you encountered on the playground. Imagine feeling all of the negative emotions and fears related to these daily sucky experiences a thousand-fold. Wouldn't you be walking the world in fear that all of these horrible things might happen again?

The amygdala is also the area of the brain that triggers our fear responses. Like immobility and freezing. Like fight or flight.

That emotional shutting down we think we see sometimes in people with autism--that immobility is a fear response. The fighting meltdowns we sometimes see in people with autism--that fight or flight is a fear response.

My god, my children live in fear, I realized. My heart hurt for them and my eyes filled with tears as I put the neurological pieces together.

No wonder routine is so important to Nick--he's probably afraid that he'll encounter negative experiences that trigger so much emotion and fear, and staying to routines reduces the chances of that happening.

No wonder Noah is a walking extreme of emotion--loving so tenderly, laughing so loudly and joyfully, hurting so incredibly. Like his brother, he has an over-active amygdala.

And . . .

All this research finally put one piece together that doctors have always scratched their heads at. Noah can't smell. When I asked why, the best I ever got from a doctor was a shoulder shrug (although an OT suggested it was caused by birth trauma). But here I found this one little area of the brain that explains everything. My boys obviously have amygdalas that function atypically--and this is the area where we process smell. It makes perfect sense that if this area of his brain is affected by something that his sense of smell would be affected too.

I really don't have that cape

Nick's been having an "off" week. That's the term that comes up in discussions with his therapists and teachers during times like this. It seems that with all their thera-speak and edu-speak that they'd come up with something fancier, but "off" is the word of choice.

And always, when he has an off week, I am thrust into the role of detective, trying to figure out what went wrong so that the off could be turned back on again. Was it the allergies? The slight increase in Depakote last week? The nosebleeds? The end of the school year? A decrease in calcium or Omega 3s or Vitamin D or Selenium? The therapists and teachers add pressure to my obsessive sleuthing, pelting me with question after question about what might have changed to make him off.

A lot of times, I can figure out what triggers him. He's OCD about some things, which a lot of people with autism are, and I've become rather expert in memorizing those things. If we're going to the school bus stop, we need to walk down the left side of the driveway, and then we have to close the gate to the neighborhood ALL the way, and then we need to stop at a certain spot to play in the dirt. Mess up one of these things, and the aide on the bus gets scratched by an angry child who needs to finish his rituals before being buckled into his seat. But I've memorized them all, and learned how to speed through them when the bus shows up too early, so Nick's usually okay.

But there are some things that I just can't prepare for.

Nick and I went to the store this evening. Not the crappy discount store around the corner, but the nice store a few miles away where I could buy some nice things. I remembered that the last time we went to that store that Nick got upset and so I proceeded very carefully and cautiously. I was living sunshine, making the store as bright and as wonderful for my son as I possibly could.

We got the cart and, doing my best rendition of cheerleader-mommy, I settled Nick into the seat. And . . . nothing! He sat down happily in the cart! This is usually the battle line--if we can cross it, we're golden.

But then I buckled the seatbelt.

It wasn't really a seatbelt; it was an armpit belt. And Nick FREAKED OUT.

I could totally understand his freak-out; in his world, seatbelts NEEDED to be on laps. It made sense. And so I unbuckled the seatbelt.

Nick freaked out even more. Because a seatbelt gives him security: YOU CAN'T BE IN A GROCERY CART WITHOUT A SEATBELT!

And so I took him out of the cart, talking to him in my most soothing mommy voice, reassuring him that it was going to be okay. He cried and fought to pinch me in his frustration, and I continued to soothe. A woman trying to get around us to reach the kiwis shot me a dirty look, and I decided that rather than yell "What the fuck is wrong with you, lady? Haven't you ever seen a kid with autism?" that I would just ignore her and continue to soothe my son.

He screamed and cried and said "bagel, bagel" in between the screams and cries . . . which totally made sense to me because carbs make me feel better when I'm upset. And so I scooped up the battered pears, the victims of Nick's angry kicks, settled them into a safe corner of my cart, and took my son over to the bread aisle.

I found bagels. I lifted them up as an offering . . . and he shoved the bag away and screamed.

Because we weren't at the crappy store around the corner and these weren't the cheap Sara Lee bagels he was used to. The unfamiliar bagels were probably more stressful than the misplaced shopping cart seatbelt.

We made it down one aisle. I talked to Nick and soothed him, staying calm and loving the whole time. And then we went straight to the checkout line where, thankfully, there was only one person in front of us. As we waited the short wait and Nick cried, I reached for a chocolate bar, opened it up, and offered a piece to Nick right there. He took the piece, crumbled it in his hands, and screamed. I scooped up the bits of broken chocolate from the floor, hoping they wouldn't melt in my pocket before I could get to a trash can.

And, and long last, we made it to the car . . . with inedible pears and a crunched-up chocolate bar in our bag of purchases.

In the car we'd be okay. Nick likes riding in the car. He has the security of his five-point car seat harness to make him feel safe, the rumble of the road to relax him, and the sights zooming past us to keep him enthralled. In the car we'd be okay.

And so I drove along until it was time to make the turn off the main road. As I did it I had the realization that I was doing it ALL WRONG, but it was too late.

Nick screamed and cried and kicked my seat. I'd waited a millisecond too long to move the car over to the right, and I hadn't moved far enough over, either.

I soothed Nick through the turn with my gentle voice, telling him that it was all going to be okay.

And then we turned to enter our neighborhood, and the car before me had triggered the gate . . . which meant I didn't have to stop for a moment and wait for the gates to swing open.

Nick screamed again, and kicked again . . .

and I screamed too.

"Calm down, Nick! We're going to make it home! It doesn't matter if we stop or not!!"

My god, I screamed at my child.

We pulled into the driveway and I apologized to my son. "Honey, I'm so sorry I yelled at you . . ." and then, out of nowhere, I started to sob. "I love you. I love you so very, very much. And I'd do anything for you," the tears were streaming down my face now, "but sometimes it's hard. It's just so fucking hard."

And my son, hearing my sobs . . . laughed. Because he doesn't know how to decode the emotions of others. I mean, really, if you think about it, a laugh and a cry sound a lot alike.

So we got out of the car. We walked up towards the house, and something somewhere along the sidewalk wasn't quite right and Nick dropped to the ground in tears. I picked him up and we walked into the empty house, crying together.

---------------

Denise was off today. The detective tries to piece together the reasons why. Was it the chaos of getting her boys through the last week of school? Having her allergies transform into a sinus infection complete with sore throat and earache? Waking up at an ungodly hour because Noah is on his summer schedule, awake and ready to take on the world when it's impossible to wake him during the school year? I mean, it must have been something; why else would she have yelled at her son and broken down into sobs?

But you know, maybe there's no smoking gun for why I was off or why Nick was off. Maybe it's just that sometimes autism is hard.

When I Fell in Love

I never saw myself as a baby person. I remember when I was in my mid-twenties and my friend Beth had a baby . . . I held that thing and was completely FREAKED OUT. Beth's baby fell asleep in my arms and I didn't know what to do. "He's asleep," I said in panicked whisper, and Beth calmly replied, "It's okay; you can just keep holding him." So I did, freaked out as I was.

A couple years later I was in the bathroom at my mom's house with my cat, Nutmeg. She sat with me as I waited for the plus sign to show up on the pregnancy test. Which it did.

I instantly loved that person who I just learned was living in my womb. I remember going to the mall and buying the baby a present--a yellow rabbit beanie baby named "Grace." Although I wasn't expecting or planning to be pregnant at that point in my life, grace seemed like the best word to describe how I felt about that little person, like God had given me a gift in His grace.

Though I still didn't see myself as a baby person. Fortunately, I thought, I happened to be married to someone who *was* a baby person. He was the kind of guy who would always talk and wave to the babies in the supermarket . . . and I always tried to get him to stop because I was sure the moms would be freaked out by this stranger cooing over their baby. He was the kind of guy who cried at the tiny baby booties I bought at Target . . . I think we both figured that he'd be the one who did the bulk of the baby stuff, since that was his thing, and I'd sort of take over when the kids got older.

Of course, that's not how it happened at all.

The baby was born . . . and since he was a boy the name "Cosette Grace" didn't really fit him. But Noah did.

The first few weeks were a blur. I was recovering from both labor and a c-section, adjusting to the irrationally large hoards of laundry that such a tiny person produced . . . but then, after those first few weeks, something amazing happened. I fell in love.

I'd loved Noah ever since I'd seen that plus sign in an abstract sort of way, but it took time for me to fall into that absolute, indescribable sort of love. I think it's because I've always only been able to fall in love with people I knew well, and Noah was a stranger at first. But once I got to know him, there was this love that I never fathomed was possible.

That first summer is the summer I know I will look back most fondly on for the rest of my life. The semester didn't start until September, so I had three months of glorious time with Noah. I'd nurse him and he'd fall asleep in my arms . . . and rather than being freaked out like I was with Beth's baby, I loved ever second of him there asleep next to my beating heart. I didn't take him to his crib to sleep, but instead I sat there with him, holding him, for hours upon hours.

And I loved the tough times too. When he was sick and I rocked with him in the rocking chair in the corner of his room, I remember feeling so THANKFUL. It felt like such a gift to be able to be the one to hold him and help him when he was hurting. And when he coughed so hard from croup that he puked, I caught the puke in my hands as I held him. Yep, that's when I *really* knew I was a mom.

A few years later is when Nick came along . . . this time the baby was planned. And again I fell in love, but this time it was faster. I remember not wanting to leave the hospital because I loved the quiet time Nick and I had with each other there. To love two people, so fully . . . I never knew it was possible.

It's Mother's Day so I'm thinking about these two great loves of my life today. Is it hard being their mom sometimes? Yes, sometimes. Autism can be a bitch, and every now and then I wonder what it would be like to have a week without habilitation therapy and occupational therapy and speech therapy and IEP meetings and doctor's appointments. Oh, and those cold, calloused people who don't give my children the compassion they deserve as human beings. But would I ever, ever trade my boys for a moment? NEVER. They are the two most amazing people I've ever met. The loves of my life.

And when I focus on that love, it makes all the other decisions in life easy to make.

Empathy

They say that people with autism lack empathy. There's the whole theory of the mind hypothesis that says people with autism have mindblindness--they are blind to the thoughts and experiences of others.

Today Nick proved those theorists wrong.

Nick was in a sensory-seeking mood as he was trying to calm himself down from the trauma of a dog visiting the house (unfortunately the therapy techniques that work for Noah don't work for Nick). And so in his frantic moment he reached for the nearest person--Noah--grabbed him by both arms, and in a split second had bit his bicep.

The bite broke the skin. It was the ugliest Nick bite I'd ever seen and, my friends, I've seen a lot of Nick bites.

I quickly shuffled Nick off to his room and focused on Noah's wounds, making them feel a bit better with band-aids and Bacitracin and ice packs and lots of mommy kisses. Then Nick came out of his room.

I did it mostly for Noah, because I wanted him to see that I treated his brother's misdeeds the same way I treated his, and not because I thought it would register with Nick. I brought Nick over to where Noah and I sat on the floor and had him sit with us. "You hurt Noah," I told him.

Nick looked at his big brother, who was still working to control the sobs, and when he saw the sadness in Noah's face, his face immediately changed to match the sadness. I thought that *he* was going to begin to cry.

"Noah sad," he said with a heartbreaking tone in his voice.

"Yes, Noah is sad," I told him. "Noah is sad because you hurt him."

"Oww, oww," Nick said, acknowledging his brother's pain.

"You need to say sorry to Noah," I said. Nick was silent. "Say sorry to Noah," I repeated.

"I sorry Mommy," Nick said.

And then I had the brothers hug.

****

Six months ago I wouldn't have been able to get Nick to focus on looking at his brother's face. Six months ago Nick wouldn't have been able to speak the words he did today--he was still using PECS cards to communicate.

Those two things are miraculous. But the most miraculous thing is the way he looked at his brother and felt his pain. I've never seen empathy and compassion like that. He saw his brother in pain and immediately he felt that pain, too.

I love the way Nick pushes the boundaries every day, challenging what all the theorists and experts said about what he'd be able to accomplish. He started speaking when they thought he wouldn't. He went from one-word utterances to complete sentences in mere months when others thought it was impossible. He demonstrates compassion when the very term that labels him, autism (derived it from the Greek word αὐτός, meaning self), says he is so into himself that he can't sense the feelings of others.

Ha, take that experts--a five-year-old has thwarted you again.

My Autism Awareness Button

It's April, which means Autism Awareness Month. It's the month when we change our Facebook profile pictures to autism graphics, the month when we wear autism pins on our lapels. We wear puzzle piece buttons with pride, wanting to share autism with the world.

But how much can someone learn from a button, really? I mean, can a graphic of a puzzle piece really tell anyone anything about my sons? I don't think so.

It's spring in Arizona, which means the temperatures are close to 90 degrees. It's the time of the year when I get creative in my dressing, wearing lightweight long-sleeved shirts or toting along a lightweight cardigan to put on when I have to interact with someone (especially at work). It's a masking game I play, I suppose.

Tonight as I sat in my office, it was too warm to keep the sweater on, though I figured I could throw it back on if one of the tutors had to come in to talk to me. As I sat there at the table, I looked at my arms, my living autism awareness buttons.

It's my right arm, mostly--that's the one Nick prefers. It's covered in scars, scratches, and bruises. When people see it, they usually say nothing, though others ask about my cat. I usually let them think it is my cat, rather than telling them the truth.

My son *loves* me, more that he loves anyone in the universe. And because he loves me, he wants to experience me. A typical child might just snuggle next to mom to satiate the need Nick has, but his sensory system is under-responsive; he simply wouldn't feel anything from a gentle snuggle. He wants to pinch me and bite me--hard--so that he can feel and experience me.

Yes, I'm doing all the things the so-called experts have told me to do. Behaviorists say to ignore the behavior to extinguish it, but that doesn't work for Nick--I mean, it's not like he's doing the behavior to get a reaction from me, so the whole principle doesn't apply here. I am having some success with replacement behaviors--I'm teaching him to squeeze instead of pinch and to give super-hard kisses instead of biting. And he likes to push his forehead into mine to get that physical sensation he seeks. Slowly, we're replacing the destructive with the acceptable, but it takes time.

And so, for now, my arms carry the scars of my son's love, tokens that most parents never get to carry with them as reminders of how much their children love them. I think that for Autism Awareness Month I shall just wear the scratches and bruises uncovered as my autism awareness button. Perhaps not as pretty as a colorful puzzle piece, but far more accurate.

I'm going to step into the vaccine mess

Sometimes being in the autism community is like living in Port Charles or Salem--we've got as much drama as a soap opera.

Maybe you heard the news a couple of weeks ago, the news that stirred up all the drama and fighting all over again. Dr. Andrew Wakefield, the British researcher who published an article linking the MMR vaccine to autism, had his work retracted by The Lancet because of some unscrupulous research practices.

The publishing of the retraction might as well have been a bell ringing at a boxing match because as soon as many people within the autism community heard it, they were ready to rumble.

The community has been polarized, and viciously so. People on both sides are calling their opponents ignorant nutjobs. And it's everywhere I go in the autism community--on blogs, on listservs, on Facebook. People everywhere are writing angry, impassioned messages about how stupid the other side is.

I think, perhaps, the way this is playing out is demonstrating something about the roots of autism that Wakefield's research didn't address--that autism has genetic links. In these autism moms and dads, I see mindblindness, black and white thinking, and social impairment that are all indicative of the autism spectrum.

I can understand the people on both sides of the debate. Wakefield's research practices run contrary to all the ethical principles I adhere to as a researcher, and I am deeply concerned that medical journals do not require the authors of studies to disclose their financial stake in the research. (Ethics are incredibly problematic in medical journals: click here and here for stories from NPR.) And, honestly, before autism hit my boys, I thought that parents who assumed their children's autism was linked to vaccines were just grasping at straws to try to explain away (and blame away) their children's illness. Then my little Nick was born and had some auto-immune issues. He was on antibiotics pretty much constantly throughout his first year of life. Then he went to his one-year check up. He got all of his one-year shots, plus a flu shot . . . plus all of his nine-month shots all over again because the float pool nurse who got pulled in to cover that day didn't know how to read an immunization chart. About a week later, Nick had a dangerously high fever that even had the doctors scared, and then he lost so many of the skills he'd gained in his first year--waving hello and goodbye, kicking a ball, speaking a few words. About two years later, when I took him to a specialist who ran every test imaginable on him, I found he was *still* fighting an active measles infection.

Here's the thing that makes me sad: so many people will only read half of the above paragraph. They will see my critique of Wakefield's research practices and assume I'm one of the evil people after their savior, or they will see my narrative about Nick's post-immunization horrors and call me a loon for even thinking the shots and the regression could be related (even if medical tests showed an active measles infection).

As a scholar, I am passionately committed to what Krista Ratcliffe calls "rhetorical listening" or what Mark Osteen calls "empathetic scholarship." I believe that in order for us to make any progress, we need to listen to one another and understand one another's positions. In my scholarship and in my pedagogy, I make strong calls for such rhetorical listening; I demand that the neurotypical listen to and respect the neurodiverse. I find it sadly ironic that the neurodiverse and their advocates are failing to listen to one another.

And so here is what I propose: shut the hell up. Everybody. Stop calling each other names and listen, truly listen, to what others have to say. That is the only way that we can find a shared common ground that can be a true basis for change.

Saying "I love you"

Nick had slipped out of his bed, yet again, but he was being so cute that I didn't have the heart to say "night night, sweet Nick"--the words that always make him run to either his bed or mine and throw himself under the covers.

I was sitting at the dining table working . . . okay, I was harvesting some trees on Farmville, but I was going to start doing some work soon, really . . . and Nick climbed behind me in my chair as he loves to do. He leaned around and put his lips on my cheek, the trademark Nicholas pucker-free kiss, and then decided to climb up on my shoulders. I was struck by how funny a sight it must have been, Nick perched on my shoulders as I "worked" at the computer, and I momentarily thought about how I might capture the sight on my camera phone without letting Nick slip from my shoulders.

That's when he said, "Tee-cle!" My phonetic spelling *so* does not do justice to the the cuteness that is Nick saying "tickle."

"Hey, how am I supposed to tickle you when you're up there?" I jokingly asked. And then, with my right arm carefully wrapped around his leg in case he lost his balance, I reached my left arm behind me to tickle Nick's ribs.

He laughed and then said, "I wuf you."

(Okay, my eyes filled with tears again just typing that.)

Maybe he was saying 'I love you' because I say it to him all the time when I'm tickling and cuddling with him. Maybe he was repeating the words he'd heard so many times before without understanding what they stood for.

But one thing I do know: Nicholas knows what it means to love. My little boy loves me.

And tonight he said the words. They are the most beautiful three words I have ever, ever heard.