Fear, Loathing, and Autism Speaks

Trigger warning: fear-mongering, ableism, othering of autistic people.

*****

A little more than two years ago, I began to wonder.

A little more than a year ago, we pushed beyond our initial pediatrician response and reached out to specialists.

On Valentine’s Day, 2013, Margaret received an official diagnosis of classic autism.

*****

Ten days prior to Margaret’s diagnosis I watched a military doctor at RAF Lakenheath administer the ADOS test, the final component of the diagnostic process. I had, I thought, made peace with the idea–we had been told months earlier by a developmental pediatrician that we should “begin to prepare” ourselves for a diagnosis. The occupational therapist we saw prior to that was relieved we had said the word “autism” because that meant “I can say it too. We can’t mention it unless the parents do if there’s no official diagnosis. Parental reactions are too incendiary.”

Too incendiary. Remember that.

Because Lakenheath is hours away from our home and we had an early appointment, no babysitter was possible. It was agreed that I would be in the room while Tom wrangled Moira elsewhere. The doctor looked at me with very kind eyes as I asked “You’re SURE? You’re SURE this isn’t just a speech delay? This is the diagnosis you’re recommending? YOU’RE SURE?!” She was sure. She was right to be.

The world went white. It buzzed. I couldn’t make out anything else she said through the giant, booming voice in my own head, drilling through the buzz and taking me by the shoulders and getting into my space and shouting, BELLOWING, in my brain:

“Do. Not. Screw this. Up.”

The next forty-five minutes are a blur. We were handed the American Pediatric Association’s book about autism and sent on our way. We went to the RAF commissary for snacks for the drive home. I staggered around the aisles, still buzzing (“DoNotScrewThisUpDoNotScrewThisUp”) paying for the food, somehow. Going back to the car and lasting maybe 15 minutes, maybe 15 seconds, maybe an eternity–maybe, in a way, I’m still there–until I broke into great whooping sobs.

“It’s so big, Tom.” I wailed. “This is so big.”

It is a small comfort to me that I didn’t, even in the white-noise depth of the moment, say that it was too hard, or too sad, or too bad. It is a small comfort to know that even then, way down deep, I knew the truth of the matter was not that this–not that autism–was tragic, but that the enormity of what I really needed to understand meant that the ice-cold, brutally reptilian voice of my maternity had to leap over the doctors and the rhetoric and the fear to speak the loudest:

You have been given a beautiful, rare, intense, precious responsibility. Do not screw this up.

*****

But why the wait? If the diagnosis was so certain, and we knew and had educated ourselves and surrounded ourselves with a community of autistic adults and teens, people who filled us with hope and pride and joy, why did we wait? Nearly 13 months lagged between our first questioning and our first serious action.

We were afraid. I was afraid. The conflated rhetoric surrounding diagnosis, decrying doomed marriages and bankrupted futures and finances, was as immense as the confusion we felt. The biggest organization of them all was the first we turned to: Autism Speaks. Some of what they wrote was useful, but some of it was clouded in language that unsettled me deeply (discussed here in this fabulous, must-read post by Jess of A Diary of a Mom). I wanted to give them the benefit of the doubt for so long. They are the largest. They have the biggest reach. Awareness surely counts, yes? Surely with enough work they’ll grow to include autistic people more and more in their upper echelons, yes?

Last night I read Autism Speaks co-founder Suzanne Wright’s Call to Action DC. My blood boiled and my head buzzed as it has not done since that cold, cold February day when we became sure that this thing–this condition that people spoke of in the hushed tones saved for the sick and the dying–was going to touch our lives. An excerpt from the introduction, the tone of which does not improve over the length of the piece and which, if you read the post from A Diary of a Mom, is sadly indicative of an alarming linguistic trend:

This week is the week America will fully wake up to the autism crisis.

If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.

We’ve let families split up, go broke and struggle through their days and years.

Now that, my dear friends and family, is what should call for an incendiary response.

Margaret is not missing; she was never lost. She is not ill. My family is not broken, we are not a tragedy, and the enormity of my rage requires that I have to, HAVE TO, resort to incendiary language here to decry this steaming pile of utter horseshit in the strongest terms I can muster:

Autism Speaks: my child, our children, our friends, our family, is not a crisis.

HOW FUCKING DARE YOU declare that we are?

Autism Speaks, you may not speak for us. You may not speak for me. You may not speak for my child. Your blue lights and puzzle pieces may not cast shadows on my home. Autism does not destroy families. They are destroyed by fear. This is why children suffer: because their families become convinced that their children are inevitable ticking time bombs of incomprehensible burden. Futures are bankrupted because nobody believes in presuming competence and investing in real, genuine, dignified accommodation; we are too busy being told to be afraid to see what is possible.

I hope like hell that Margaret never reads anything like what Suzanne Wright has written. I know that this is an impossibility. The actual words change, the people change, but the attitudes don’t change as quickly. Much as it sickens me, she will lose her innocence. What terrifies me–what shakes me to my very core–is the utter loathing in Suzanne Wright’s words. Oh, how I dread the possibility that Margaret may internalize that loathing; how I dread that her joy may crumple and her hope may shrivel from the core out. We must, MUST not support these attitudes. We must turn away from fear-mongering, othering, and martyrdom.

We are turning away from Autism Speaks.

Our family gets one chance. One chance to raise our daughter to adulthood. One chance to make a difference. One chance to turn to joy.

And we cannot–we dare not–screw this up.

From Here

Wow. WOW.

I am absolutely blown away by the incredible response to the autism acceptance post. It is, by several numerical places, the most viewed page in this site’s mostly low-ranked history. My heart is so full knowing that by sharing our story we’ve hopefully changed a few minds and hearts about what autism can mean for a family. Working up the courage to hit “publish” and put ourselves out there was one of the most emotionally intense things I’ve done, and people, I delivered a ten-pound baby in my bedroom without so much as a belt to bite. I know “intense.”

So I guess the question is where to go from here. My hope is that some of you have stuck around by following, subscribing, or adding me to whatever feed site you’ve chosen to replace Google Reader (RIP). You’re going to get some ridiculous stories (I have a WHOPPER of a hotel fail coming up), some sad stories, some travel stories (that don’t involve hotels), and some general diary-keeping. My girls are so small, and aside from a small box with a few trinkets this blog is what I have instead of baby books.

But in the end, I keep coming back to one of my favorite books, The Cider House Rules. “In any life, you have to be of use.” Activism is an avenue I had begun to consider, but right now I know that what I need to do most is listen, and listen, and listen some more. So, I’m listening, autistic readers and allies. Please tell me: how may I be of use to you? How may I best serve you and this community? What needs to be done?

I’m also going to need to write some posts about things like my love-hate relationship with Julia Stiles’ hair and other frivolous stuff. That’s just what I do. It’s my favorite thing.

Family, travel, frivolity, life, the universe, everything, and now autism activism. We’ll take it from here together.

ETA: There are a lot of things I’ve written during the period where we were initially questioning what was going on through the actual diagnosis that I am not proud of. There is a lot of fear, anxiety, denial, and ignorance about autism on display. I’m leaving them up because I want to be honest about where we were and how far we have come–and to be reminded of how far we will go as a family. That’s why I’m tagging this under “Diagnosis: ?” too: so anyone who is also questioning will first see before the archives that we came to a great conclusion.

Please forgive my past offenses and understand that we are constantly evolving and will continue to make mistakes, but that we are operating under the philosophy “When you know better, you’ll do better.” We know better about a lot of things; keep pointing stuff out.

We’re travelers, after all, and this is a journey too.

Restraint

In the weeks since our conversation with Maggie’s teachers, we’ve been visited by a home support person and will meet with one again. Today we’re meeting with the speech therapists at the local children’s center. The wheels are in motion.

There was an event I didn’t mention because at the time I was still too stunned to talk about it. Maggie, captivated by the Olympics, expressed an interest in the events. Despite my hesitation, I signed her up for an introductory toddler gymnastics class anyway. This was after our meeting with the teachers and in the process of scheduling an observation at school.

In short, the class was a disaster. Without boring you with details, my view from the parent waiting area brought everything into razor-sharp focus. We knew from meeting with her teachers that something was off, but the class snowballed out of control. It wasn’t just regular toddler overstimulation; it was beyond her comprehension and ability to process what was going on. We were asked, kindly, to withhold registering her for a full class. It was shocking to behold, and the question that had been building inside of us finally clanged to the forefront, ugly and blunt: “How? How did we miss this? How could we not see?”

She’s fine. She has no idea that the class went, from a safety perspective, went poorly. I was and am still a mess. Maggie is my baby, my heart, and right now my heart is walking around with a big raw “?” over it. Aside from a lovely email conversation with my friends K & G, I had to stop talking about it with people; if I knew how I would close comments on this post. People are just…well. They’re people. They mean well, I suppose, but good intentions aren’t enough to keep stunning insensitivity from hurting.

And then I read this today:

“A Terrifying Way to Discipline Children”

Oh. My. God.

Someone needs to take the internet away from me, or I’m going to build a protective bubble around my house and never let Maggie out. I don’t think I realized the vulnerability of her position until now. How could she tell me if something was wrong without couching in her scripted code? She couldn’t. I physically became ill reading this.

We’re getting help for her. This is going to be okay. I would not choose to “cure” her if she does have a diagnosable condition, save to help her learn to verbally communicate as clearly and effectively as possible. We want to help her enough to be able to advocate for herself and be independent; in that respect, she’s well on her way.

But oh, I need the world to show a little restraint for us right now. Just…please. Don’t send me articles like this. Don’t make jokes about the condition to cheer me up or tell me, like you know my child better than I do, that she’s just a quiet late bloomer. Please.

Wrestlemania

One of the things that makes Maggie’s social/communication…whatever this is so hard to diagnostically pin down is her emotional acumen. Whatever else she may be, that child is a born caretaker–loving, generous, empathetic. She spends a lot of time with her dollhouse and in her kitchen, making sure everyone’s needs are attended. At our in-home interview last week, Maggie fixed a plate of (wood) cookies and a (toy) cup of coffee (air with pretend milk and sugar) for the education advocate. She had not the slightest idea of how to answer a direct question, but gosh, she wanted to try. Maggie desperately wanted to make this friendly, grandmotherly woman comfortable and give her what she wanted. It was as heartwarming as it was heartbreaking.

Maggie is calm, quiet, and gentle, especially with people and animals she’s familiar with. Dogs…no. Much too boisterous. Kitties? Approachable. Guinea pigs, like the ones from preschool? Oh, yes please. Let’s pat and snuggle. Overall, adults are much easier for her to deal with than children her own age. Toddlers and young kids are fast-paced and noisy, constantly transitioning. I mentioned Maggie’s preference for the calmness of adults to the interviewer, noting “I can’t tell if she’s on the spectrum or a super-introvert or just a three-year-old trapped in a Victorian-era 40-year-old’s body or all three.” There are times when I think if we got Maggie a rocking chair by a woodstove and a proper teapot, her obstacles would dissolve away.

And in the midst of all this…is Moira.

Moira is, without a doubt, one of the best “therapy tools” we have for Maggie; Maggie is the type of kid who NEEDS a sibling to force her out of her comfort zone. Moira does not care about your personal space issues. Moira, frankly, thinks your idea of personal space is bullshit and you should reevaluate, because Moira wants to LOVE YOU and your ISSUES are impeding her ability to freely bestow her loving. She is, in the most flattering sense I can muster, just like a puppy. Moira follows Maggie around with body language that simply begs “Oh please! Tickle me! Rub my belly! Hug me and put me in a headlock and wrestle me to the floor! Give me kisses! Let me kiss you back! Wait where are you going LET ME DROOL ON YOUR FACE.”

At first, Maggie was horrified by such a display of exuberance. To her credit, she never got physical with Moira (or any child unwelcome in her space). She never hit or pushed to get away; she simply relocated. Then Maggie started to realize that Moira was pretty good at playing, especially because she’s not quite walking yet–when Maggie is done, Maggie just walks away and seeks the high ground. I have no idea what will happen when Moira can walk and climb, but that’s Maggie’s problem.

Yesterday, the girls spent quite a bit of time playing peek-a-boo around the coffee table. Maggie gave constant, affectionate hugs and Moira reciprocated with gleeful shrieks. Moira snatched up fascinating toys and packed them up her nose and into her mouth; Maggie gently removed them and gave her more appropriate toys.

And finally…she wrestled. As only Maggie can.

She put Moira in a very careful headlock and ever-so-gently threw (re: delicately laid) her on the floor. Cue delighted giggles. Then Maggie hid under a blanket (protecting the hair Moira loves to yank) and yelled “Where’s Maggie?!” until Moira pounced on her head. She picked up a Moby Wrap and when Moira grabbed the end, Maggie slowly dragged Moira across the floor (under my supervision, of course–no strangulations on my watch!) while Moira howled “Aggie! Aggie!” with the joy of a friendly little puppy who just wants to tussle.

These girls…I don’t know. I don’t know how my heart hasn’t burst from all the love. They are just wonderful.

Circle Game

Last year, I wrote about what I saw and I brought the information to the doctor like a good mommy. He said it was stress. It was too soon to tell. Maggie was young and undergoing two major life changes: moving to a new country and a pregnant mother. It was stress and only stress. I wanted to believe him–we all did–so I did. The doctor recommended a Montessori-style preschool for her, and I called that day.

I asked the teachers to keep an eye out, to see if they observed anything…different. “She’s very young. She needs time to adjust.” It was true, and she did, and we gave her that time, and still we were the Watsons to Sherlock.

As ever we saw, but we didn’t observe.

Maggie improved dramatically, and yet conversations with other children of the same age left me with an icy pit in my stomach. I could never talk this way with Maggie. I thought about the way she responded–or didn’t, or couldn’t–to questions. Her masterful coping with memorized scripts and her brilliant mimicry with contextually appropriate passages from books and movies. If you didn’t know better, if you weren’t the one sitting on the couch reading those books again and again to her, you would never know. I brought it up with her teachers and their faces fell. They started to watch more closely.

We heard from family. From friends. “Oh, she’s still very young.” “Who can tell? Kids are so weird under the best of circumstances.” “All she needs is love and time.” Then a dear, dear family friend–Maggie’s namesake, in fact–who works for a special organization sent us the information that started to form the outline of the puzzle. We read the fact sheets with dawning comprehension.

Finally, her teachers summoned us to a meeting on the last week of term. “We think Maggie should be observed at school by a therapist.”

A lot of words were tossed out. Echolalia. Socialization. Give-and-take in dialogue. Scripting. “We aren’t experts in what this is or might be or if it’s anything. We just know that we think an expert should weigh in.” said those kind, kind ladies who love Maggie so. “So we want your permission to have her observed.”

And finally, finally, we knew that someone else could see it too.

We gave our permission immediately and are waiting on a date for this fall. After hours of research and reading, Tom and I have a pretty good idea of what we *think* this is–not autism, no, that’s too broad, but something else; something a little more specific. I’ll wait until after her evaluation to say if we were right. We have resources, monetary and emotional. The things that are locked up in her brain are just at the surface, waiting for a skilled team to help us crack the code. Don’t feel sorry for her, or for us.

The only thing I can feel about any potential diagnosis is relief; relief that we are being heard and taken seriously by people who love Maggie. There’s nothing in my heart but gladness that we are going to find the tools to help our baby express her worldview–her beautiful, wonderful, unique Maggieview. There’s an entire world locked behind those liquid chocolate eyes waiting to be revealed to us.

I can’t wait to get her a locksmith.

The Gift

As I have written before, Maggie is a special little snowflake. She is not like other children in a lot of wonderful ways…and some not-so-thrilling ways. We have been coping with a bugger of a case of sibling jealousy here. Maggie seems to not take Moira herself personally; she’s very gentle to the baby. No, no, she haaaaates us to the point of hunger strikes and tantrums so violent she breaks out in hives. It’s just boundary-testing to see how much nonsense she can pull before we push her away in favor of the new baby and of course, we would not do that. We just need to wait for Maggie to internalize what we’ve been telling her all along: that we will always love her and that she is a very important member of this family. It doesn’t make it any less trying, though.

Enrolling her in preschool has been great in terms of giving her a space of her own during this transition; she is opening up to other adults, if not other children, and is settling in rather well. This year the preschool did a reenactment of the nativity for the parents with a few holiday refreshments afterward (and big, big thumbs-up to a school that will serve alcohol to the parents at noon). Because I am essentially naive, I decided Maggie would be joining everyone in the nativity play. Lots of stimuli, organized activity, responding on cue? What could go wrong?!

Obviously, this did not work out. Specifics need not be mentioned but as we walked in you could practically see the words “Bull. Shit.” pop into Maggie’s eyes. There were about 20 kids in various costumes, including an angelic little choir, and Maggie in her striped fleece hat and puffy coat, resigned to the “musician” section. Her job was to ring bells.

She did not.

Maggie did, however, come sit with Moira and me to watch the nativity play and enthusiastically clap for her classmates for a few minutes before she wandered off to rummage through a bin of stuffed animals. No doubt she wanted to cherry-pick a few good ones while her classmates were all occupied. She pulled out two I recognized from earlier in the term (“No, Maggie, those don’t go home with us! Sorry!”) and brought them over; she cuddled them as the obvious favorites that they were. I had Moira in the wrap and had juuuust enough room left on my knee for Maggie to perch.

I briefly was jealous of the other parents with their enthusiastic participants and wondered if we would ever get to the point where we could take photos of our firstborn participating in…hell, in ANYTHING. It was brief, though; she is still so young and I have vivid memories of being backstage at my first dance recital with my mother unsuccessfully trying to convince me to join my classmates in performance. Who can blame her for not wanting to don angel wings for a group of strangers?

Then I realized something else was going on. Maggie was making her animals dance and chat to each other, as per her usual. Then she stopped to stare at Moira. She thought for a few moments.

“Moira needs a toy.”

Then she tucked one of the animals–her beloved favorite–into the wrap next to Moira’s face, patted her sister gently, and resumed playing with her lone animal.

Onstage the tiny wise men were offering their gifts to the son of God, the miracle of Bethlehem. But in the audience we had our own tiny miracle too.

Happy winter holidays to you all.

Stress

The preliminary visit to the doctor went well. We’re going to have a further evaluation done juuuuuuust in case, but the initial thoughts from the doctor (which we had been floating around ourselves for the last few days) was that Maggie is still coming down from the high-stress, high-instability period of…well, her whole life. She likes to control the elements of her environment that she can–it comes off as potentially sensory, but it’s more about being the boss over the areas that she can control since so many other things have been up in the air.

It makes perfect sense, really. Between Tom’s 5-month business trip where she and I bounced all over the United States, three big trips (two to other countries!), a seven-week period of transit between Hawaii and England, the differences between life in Hawaii and life in England, parents who have been under strain, and a new baby on the way that she’s not totally sure about but she knows something big is up…well, no wonder. No freakin’ wonder. I know how hard it is for me to get out of bed some mornings; no wonder she melts down if I try to put her in a new pair of pants she’s never seen before. It’s just one more change she had no say over, and frankly, Mommy has no fashion sense. I’d cry too.

We’re still going to see the home visitor for additional input–it’s never a bad idea to have the home health visitor in your corner anyway, regardless of what’s going on–but our strategy includes lots of kind words, lots of hugs, easy transitions, slowly moving the next few weeks, quitting ballet entirely. She’s enough like I was as a child for me to know where her other difficulties are going to lie; with the information we’re collecting I feel like I’m getting better at speaking Maggie’s language and getting MY confidence up, which will help me with building up hers. Her world is still crazy to her and sending her crazy signals that make her act a little bonkers, but right now we think it’s for a reason we can readily handle. All good things.

Besides, it’s cold enough in July for her to wear pink fleece footie pajamas. After Hawaii, I totally get losing my mind over this place.

Dandelions

(He is young, so full of hope; reveling in tiny dreams. Filling up his arms with flowers right for giving any queen.)

Today Maggie and I went raspberry-picking. The field near our house has fantastic plants, but in the manner of all English land the ground cover sometimes tends to thistle and nettles with sharp, poky leaves. If you dress properly you’re fine; if you’re dressed in shorts and sandals for a warm summer day you’re going to have your legs and feet clawed up.

 (Running to her beaming bright while cradling his prize; a flickering of yellow light within his mother’s eyes.)

Raspberry-picking is nice when you’ve blown past the halfway point of pregnancy. Less bending since the plants are so tall and anything close to the ground is going to be spotted and picked by your wee assistant (whether or not the berry makes it to the basket is a hit-or-miss proposition).

(She holds them to her heart, keeping them where they’ll be safe. Clasped within her very marrow: dandelions in a vase.)

But those plants! Oh, how sharp they are around your toes. But if you’re willing to reach in, if you’re willing to navigate patiently, if you don’t mind getting poked a little bit, if you don’t mind getting a little scratched and bloody…the fruit is worth it. Plump, perfect, sunshine on a vine.

(She sees love where anyone else would see weeds.)

Today Maggie gave me a dandelion that she picked from under a bush. It was crawling with bugs but she couldn’t wait to share it–jamming it up my nose so I could “Smell the pretty flower! Smell!” I did.

(Where do I fit in this puzzle? What good are these gifts?)

She carried it around with her until it became hopelessly tattered, in the way that things handled by toddlers so often are, and then she gave it to me for safekeeping.

(All that I have ever wanted was to give my best to you.)

We finished picking (or rather, I finished picking and Maggie finished snacking) and we walked back. She told me the story of the Velveteen Rabbit from memory and how the rabbit played with his Boy while pointing out the raspberry canes in the field. If she hadn’t told me, I could have told her; it was one of my favorites as a little girl too.

(Lord, search my heart. Create in me something clean.)

After we got home I put her dandelion on our summer nature table and went about the business of mid-day: helping small hands wash off dirt, assembling some kind of a lunch, changing a diaper and reading a story before nap time. I sat down after putting Maggie down for her rest and listened to Five Iron Frenzy’s “Dandelions” a few times. It’s always been a favorite; never more than now, now that I have a child. And Maggie? At the end of the day after everything else, she is my something clean. She is a beautiful creation unto herself.

(Dandelions…you see flowers in these weeds.)

Whatever road we travel with her, everything is going to be fine.

Into the unknown

I haven’t had too much to say since we’ve been enjoying the summer–at least, the summer, such as it is in Northern England. But briefly, I’d like to say a word about parental instinct.

For a host of reasons that I’ve been gathering, tracking, and as of today actively journaling over the last few weeks and trying inadequately to describe to far-away family members, we’re bringing Maggie to the pediatrician for a referral to whatever the UK’s version of Early Intervention is. Whatever…this…is, if it is anything at all, I am not sure. I’ve had nothing to go on but a few incidents and a nagging feeling in my gut that something was not…quite…right.

There’s something about the way Maggie processes the world that makes me wonder. Hating the feel of the hairbrush and toothbrush or the feeling of water coming out of the faucet. Becoming upset and repeating “Loud noises don’t hurt” over and over to reassure herself when she hears an unpleasant sound. Most heartbreaking of all is backing away from children her own age in a defensive posture, hands up, visibly nervous that they may engage further. It doesn’t happen that way every time; she’s been able to play with some friends’ kids. But most of the time it’s “hands up, back away.”

And most recently, today: a full-blown panic attack (body locked, hyperventilating, sobbing, begging to go to the car) at a baby ballet class that until now she’s made a few attempts to endure, if not happily. This is not the first meltdown in class or the first one that forced us to leave and find a dark corner to calm down; it was the first time we had to leave almost as soon as the class started. It was thirty minutes before I could calm her down enough to even attempt to figure out what might have triggered her reaction. She calmed down enough to agree to go into the adjoining kid’s gym play area, where she buried herself to the neck in the plastic ball pit and remained as motionless as a lawn ornament for twenty minutes before she requested to go home.

I’ve read the literature and I’m quite confident this is not autism. I’m also feeling good that it’s not full-blown sensory processing disorder; she likes to fingerpaint with her yogurt as much as the next toddler, adores the sea and sand, and would eat rebar if only we covered it in tomato sauce. Nobody is going to be more excited than I am to hear that this is nothing; just a phase (albeit a long, protracted, well-predating our move to England phase) or something easily dealt with. I’ve hesitated even saying anything when all I have are a few hunches and a couple incidents that make me say “Hmm…”

I hope I’m overreacting and that we are not about to leap over the edge into an unknown world. I really do. But our instincts say that we need to talk to someone. And so we are.