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.

Echoes

Of the things I know now about autism, one of the big ones I wish I had known from the start is how echolalia functions in Margaret’s (yeah. Margaret. I’ll get to that) brain. Reading up on it fell off the priority list for a while as Margaret started to develop more spontaneous speech, but in the last few weeks I’ve been reading more about it.

“Echolalia: That’s What She Said” by Musings of an Aspie is the single best breakdown I’ve seen of it. Easy to understand, and from the beginning with her immediate echolalia down to non-immediate echolalia for self-regulation, I can trace the four-year arc of her speech development. It’s fascinating. I wish I had realized sooner what the echolalia meant, and how to use it as a tool.

Margaret has moved more into spontaneous speech, questions, and give-and-take in the last several months. Earlier, when I wrote that she was adjusting well to school, she was at the time. Between the new schedule of days, business trips, and house guests, Margaret began to show signs of emotional and sensorial disregulation–meaning, that between autism and SPD, and her routine changes, she was holding herself together with metaphorical tape and string. There was only enough in her for utilizing one or two senses at a time, and after throwing on the anxiety of routine disorder for good measure, I noticed a big drop in her spontaneous speech. More using delayed echolalia, more uses of the third-person, more echolalia as a means of regulation. This is interspersed with huge insights into her character, like when she found the vocabulary to tell us that she found “Maggie” to be an ugly name and she wants us to call her “Margaret” from now on, and tempered by some physical outward signs of extreme upset.

One of the regulatory times has been on the way to school. I was irritated with her the third day because she refused to bring her own lunch box in. I was wrong. I was so in the wrong. Why? Because with a new schedule, with new aides, with going to consecutive full days instead of broken-up halves and fulls, she was DONE. She couldn’t handle one. new. thing. And her lunch box? We bought brand-new this past summer, and she loved it at home, but was now incredibly upset by it. I couldn’t understand why she was refusing to take it and breaking down in tears. I got snappy. I didn’t handle it the way I should have. I didn’t listen to the behavior.

I wrote once that autism has forced me to break down who I was and rebuild myself as the parent I needed to be for Margaret. This doesn’t make me perfect, and the thing about echolalia? It keeps me honest. Most people would say to themselves after getting snappy with their kid “Oh, well, it really wasn’t so bad.” The justification, the “oh, but I’m a nice person, she knows that” that comes after. Not so. Margaret echoes my every inflection, my emphasis, my slightly spitty sibilants. She sounds more like me than I do.

So on to echolalia as self-regulation: on the way to school, we now do this script.

“I ASKED you to bring your OWN lunch box in. YOU need to be responsible for it.”

“That is what I said. Mommy didn’t realize you were anxious. I had no right to get that irritated with you. I am sorry.”

“Mommy was not kind. She was angry.”

“I was not kind. I made a bad choice, Margaret. I’m so sorry.”

“I ASKED you to bring your OWN lunch box in. YOU need to be responsible for it.”

And we repeat as much as she needs to hear that I’m sorry. Ten times per car ride, maybe? There is no lying to yourself when you have an anxious, echolalic child. You will relive your mistakes as many times as your child needs you to relive them. You will hear yourself how she heard you–how cold and mean you sound. And, hopefully, you’ll learn something in time to prevent it the next time around.

What took me way too long to get, and what I finally, finally realized tonight is that we *might* be able to use echolalia as the linguistic bomb squad. At bedtime on particularly difficult days I noticed she would start doing her favorite scripts (usually a piece of new and interesting information repeated over and over) as a means to calm herself and prepare her mind for bed. No different than counting sheep, really. So we were cuddling and chatting, and I asked her a question that was open-ended and difficult. Sure enough: rocking, agitation, upset. Immediately, I prompted her latest favorite script: “What kind of camel has one hump?”

“A camel with one hump is a dromedary. A camel with two humps is a bactrian. Camels eat grass and drink water. Camels store water and fat in their humps.” Repeat. Calm. Cuddling. Happy goodnights.

So from now on, before anything else, if I see that she’s really upset I’m going to trigger her favorite scripts as quickly as possible. We do a lot of sensory work as a part of occupational therapy, which lets off a lot of steam and allows her to regulate really well. But maybe, just maybe, echolalia could be the next best tool in our box.

A binary to banish

One of the questions I am frequently asked is “So where does Maggie fall on the spectrum?” It is a question that is usually asked with kind intentions; its tone is gentle. And it is a question I didn’t know how to answer until recently because none of the usual answers felt right to me.

A lot of the time we hear “high-functioning” and “low-functioning” when describing autistic people. What I realized recently is that I didn’t feel comfortable talking in those terms because the terms themselves are dangerous. You know that some cultures have hundreds of words just for snow, of course. The public, largely uninterested in nuance, has a few words and two categories. Within those two categorical labels of “high-functioning autism” and “low-functioning autism” lies enormous hurt and oversimplification to those to whom these labels are applied.

High-functioning. That’s the one people want to hear from us, because it’s soothing and hopeful-seeming. It’s basically just like being neurotypical except she’ll be quirkily hilarious like that guy from “Big Bang Theory,” right? No. Autism is more complex than a pile of endearing quirks and sound bytes ripe for Internet memes. Before conscious thought can be formed, that pre-set sub-level attitude diminishes the very real challenges people face and very necessary support that people need. They’re drama queens, hypochondriacs, who just need to “try harder.” They don’t need accommodation. They’re just being difficult. And then comes the dismissal.

Worse still is the public’s idea of “low-functioning.” Automatically, you see people’s minds turn to stereotypes and tragedies; never-can never-could won’t-don’t-can’t NEVER pops up like poisonous mushrooms. And then the rub, that great paradox: the idea that people can’t, so why bother? Why bother troubleshooting. They’re just low-functioning, such a pity, ignore what lies within. Don’t bother with assisted communication; forget the idea of living alone or with roommates one day. And then comes the dismissal.

It’s insidious, these ideas. Nobody gets helped, not really. Supports fade away. Unemployment and service cuts loom. Worse still, a hierarchy emerges with “HF” at the top and “LF” at the bottom with no true public understanding of what people actually need or want.There is no room for potential. There is no room for can-should-WILL.

It is a curious and awful experience to be told, in so many words, that because I believe in neurodiversity and do not wish to rewire my daughter’s brain that she must be “high-functioning.” That she doesn’t struggle or work hard to make herself understood, that her anxiety is not real, or that we need not be concerned for her future. She does, and we do, and that would be true no matter what. Her joys and her struggles are as real and valid as any other human being’s, and so is her need for acceptance without condition. All people matter, and everyone has something to say once we find the right way to listen.

So the final answer? “Maggie’s future is very bright.” Because of course it is. And it’s far, far more complex and rich than any ridiculous binary labeling system.

The Protection of Play

At Maggie’s nursery school (and I have no idea if this is a nation-wide document or just her school) they have something called an “individualized learning plan” for students who have specific developmental areas on which we want to focus. For Maggie, this means the development of gross motor skills, fine motor skills, and the idea of give-take/turn-taking/other social activities. Her occupational therapist and speech therapist are advocates of play therapy and natural learning environments, and have sent packets of ideas and info to us and the school to implement. This is beneficial, because while she sees the actual therapists rarely, we can ensure that every activity we gently direct her toward has meaningful purpose in her development.

In layman’s terms? Maggie’s ILP is basically this: be a kid, and be a kid as hard as you can.

There’s a climbing tree at school, and a few other tall climbing structures. Climb that tree. There are board games to play and scenarios to play pretend with other children. Play those games. Play pretend. Fine motor enhanced by jigsaw puzzles, stamping, and learning independent care in the practical Montessori environment? Do those puzzles. Make any art you can. Learn to clean and tidy.

Except now, that’s all in a learning plan. It’s a binding document with set goals. Do you know how cool this is? There is, in writing, a statement that says she HAS to climb and have fun and that everything, everything that is fun about being a kid is now a mandated part of her education.

In this age of standardized testing, homework in kindergarten, climbing obesity rates, children becoming literally addicted to screen devices, I find myself so grateful. Grateful for this amazing nursery school, through which she can attend Reception Year, grateful for the funding they’ve found for a one-on-one aide to make sure she meets all her daily goals–climbing the tree! Playing games! Creating and pretending!–while under loving care. Reading, writing, arithmetic…those are all essential, but can come later.

I’m grateful that with her diagnosis, this plan has come together, and I’m grateful, increasingly, for the diagnosis that made it possible. I’m grateful for autism, because here in this space, before the demands of primary school and the increasingly complex social network there, she is protected. Her childhood, and the good things about being a child, are preserved.

Right now, she is protected from the world by play. And we could not be happier about it.

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.