Aware Enough

A version of this post appeared in April 2012.

We had an opportunity to share part of our story in a way that I felt I could finally add something to what seems to be an avalanche of autism dialogue.  I can’t ignore the conversation; I learn from courageous and brilliant people every day.  I cannot afford not to listen.  But sometimes it’s hard to share – people we know with typical children (Is there such a thing?  Discuss.) think we are unlucky, but we know how lucky we are.  Context is everything.

At the turn of this century, out of necessity, we took a more novel approach to addressing autism because we saw gastrointestinal symptoms we felt we needed to ameliorate; it turned out to help us address autism as well.  Karyn Seroussi was smart and brave enough to write a book about her boy, Miles, who sounded a lot like our boy.  With her book as a guide, we collected data, we tried only things that would not jeopardize our child’s health, and when something didn’t work we stopped.  But the fact is that a lot of it did work, and I remain mystified as to why people who treat their child with diet and gastrointestinal treatments are vilified by some parents and physicians.

Even my beloved mother accused me of using dietary intervention as a way of denying my son is autistic.  She said that removing foods from his diet was a way of withholding love.  But she was thousands of miles away; she did not see what I saw, she did not live what we lived.  We had spent his earliest years first trying to figure out what was wrong, then in learning it was autism, in trying to figure out what caused it.  But it soon became  clear that what we needed to do what help the boy in front of us in whatever way we could.  That has not changed.

So the years have brought an ebb and flow of interventions:  gluten-casein free diet, yeast treatment, removal of artificial colors and flavors, soy, high-pectin fruits, and bananas.  That’s what worked; it improved his health, and with improved health came the strength to deal with autism.  After the first year, my mother heard the results and apologized; it was the most important parenting lesson of my life.  We tried lots of other things with inconclusive results, and we went for long stretches without doing anything new at home while we made adjustments to his program at school.  We have two other children in need of just as much love and attention, and balance is important to us.  We resisted, not always successfully, letting autism take over our lives.

So when, in December 2008, Dr. Martha Herbert gave a talk at Massachusetts General Hospital about the whole-body approach to autism we listened, mouths agape, at someone who told our story without ever having known us.  The story of that night and the days that followed is another post, but it led to our cooperation with Karen Weintraub on an article in the Boston Globe in March 2012 (it’s the same one linked in the first sentence of this post).  We’d had other chances to be in the media but the central issue always seemed to point toward anger and controversy over schools and treatments – worthy causes, always, but not ones that merited public exposure of this particular family.  Is that selfish?  Maybe, but to me, at those moments, I felt only protective, and that sense of privacy always outweighed any sense of the greater good of going mainstream media.

Until Martha and Karen’s 2012 book, The Autism Revolution.

Karen, an eminently principled journalist and amazingly reasonable person, convinced me that we could preserve our privacy and tell the most unique parts of our journey in a way that did not make us look like every family should do what we did for our son’s autism.  I heaped her with details and diatribes long dormant over the ten years since we began interventions.  She graciously accepted my four-page answers to yes or no questions.  She sifted through it all and, after putting up with our constant hand-wringing about privacy, composed an article that leaves us very proud to have worked with her.

Consequently, during Autism Awareness/Acceptance month, sometimes I feel like we are the hurricane, sometimes we are the eye.  It changes minute by minute.  But if one reads though the rest of this blog or it’s broader parent blog, LettersHead, you will not find evangelizing about causation or our intervention strategy – there are plenty of more useful places to read about that.  For better or for worse, all I can bring myself to do is piece together the past in hopes that it will light the way for the future.  And yes, sometimes that light turns out to be blue.

My April Fool


There are many people who advocate for autism awareness and acceptance better than I.

As another April rolls around and so many campaigns go forward to integrate autism into our collective consciousness, I find that my greatest impulse is to share my undying admiration for my ASD son, who is growing into a delightful man. He is mercurial, goofy, meticulous, and single-minded. He is sensitive, intuitive, impulsive, and hyper-empathetic. He worries about death, separation and growing up.

Most of all, he is vulnerable. He is aware of a complex world in which many things are just beyond his reach and so craves sameness and routine. He wants those he loves to be always near him. The heavy mantle of trust he places on us is never a burden because within it is his precious heart that gives love so freely it makes us dizzy with delight. All his emotions are distilled down to their purest form, and there are moments when I am temporarily daunted and disarmed by the intensity.

He is, I have understood for many years, the embodiment of the greatest joys and fears of all humans. He is the precious natural resource we have been charged to preserve. We are honored by the task and hope to be worthy of it, and of him.

Autism Understanding: Wandering, Bolting, and Leaving.

IMG_7973Today, we are thinking about Avonte Oquendo and other children who left home, school or caregivers and did not survive that event. Years ago I was in a group of parents and a woman with a newly diagnosed 3 year old asked earnestly, “When will I be able to stop holding his hand?” Everyone laughed (not unkindly) and then the mother next to her leaned over and said, “How about never?” Everyone ought to hold a three-year old’s hand, of course, but she touched on something that is so hard to explain – she understood that the way she held her boy’s hand was different from the way the other Moms held their kids’ hands, and she wanted to know if that feeling would abate. The answer is…I don’t know.

Here’s the thing about wandering – many people with autism don’t “wander.” They bolt. They leave. They hide. They vaporize. They run away from something they fear or toward someplace they think is better. “Wandering” makes it sound like someone wasn’t paying attention. What a lot of parents will tell you is that all they did was blink and the child was gone. They aren’t always exaggerating or equivocating. Some of these kids are lightning fast, and mine can even tell when I’m not thinking about him, and when I am. When he was small and I was looking at him but not thinking about him, he would always do something to snap me back to attention – it was a psychic choke chain that quite probably kept both of us alive.

The way I look at it, in 1997 God sent someone to break into our house, forcing us to get an alarm system we otherwise never would have bought. Along with its many alarm functions it has am “on watch” setting that sounds a beep every time a door to the outside is opened. When our boy began his disappearing act a year later, we were ready and we needed to be – we live on a pond, with a yard that is literally impossible to fence in (though for years I tried to figure a way we could do it without feeling making our yard look like the set of F Troop). But we were soon to learn that the door beeper was not enough, because when the weather is warm, doors aren’t always completely shut.

Living near water is a source of tremendous joy and anxiety for ASD families.

Living near water is a source of tremendous joy and anxiety for ASD families.

It was preschool orientation day, and the boy was three and half and as yet undiagnosed (1998 was a different time). Everyone in our playgroup had different orientation times so all of the moms and kids gathered at our house and people took the little ones up to school for orientation and the older kids stayed to play in the perfect September sunshine. I had already gone to school with our boy (and was anxious about sending him to preschool when he didn’t seem ready, but he was three and that what you were supposed to do) and was back at home making lunch and dealing with your standard “take that juice box outside, please” chaos. I ran upstairs to get something and when I came back down I passed the front door, which was wide open. I stopped. In front of it was a perfectly clean, recently removed diaper. No clothing, no socks, just a diaper. Oh, and a perfectly formed little swirl of soft serve ice cream-like poop on my new cute front hall rug. I looked out the open door into the front yard. I called to my friend Tracy to check the back – I knew it was my boy and I knew he was gone and she and I knew instinctively that this was no simple naked romp. We scanned the shoreline along the pond – no ripples. She jumped in her car to check the state highway a few blocks away and I followed a hunch that took me down the street on the path we took for our morning and afternoon walks.

Over the rise at the end of our very long driveway I looked up and saw our neighbor’s garage door was open – the Dad who worked from home (Andrew) was home. We had children the same age, we visited their home often, and I decided to check their yard and let him know we were looking for a renegade boy. First, I decided to check the perimeter of their house so that I would not have to bother Andrew if our boy was outside. I rounded the back of the house and glanced through their slider. There stood the boy, stark naked inside the neighbor’s playroom, proud, defiant and trembling with anticipation for the chase he knew was to come. The slider was locked – there was a wall of double paned glass between me and the boy. Our eyes locked; he knew he had the upper hand. If I took my eyes off him he would certainly bolt again but my odds of catching him were good – but how much damage could he do in the process? Where would he poop next? I bellowed “AnnnnDREW!!” Nothing. I had no choice, I bolted around to the front door (locked – how did the little bugger get into the house – oh, right, the garage). I knocked and rang the doorbell until Andrew came to the door with the phone in his hand and opened it, totally befuddled – I ran past him and got to the family room just in time to see a naked bottom round the corner and go up their back stairs. I yelled to Andrew to cover the front stairway in case I didn’t catch him in time, but I manage to scoop him up just as he reached the top of the front staircase. Poor Andrew stood agape at the foot of the stairs – there was no easy explanation for what had just happened and it was hard to know whether to laugh or cry but I suddenly knew that if either of us laughed I’d be repeating this ritual every day.  We could not turn this into a game.

I look back on that day as a turning point in my understanding of my boy and for the many things it revealed about him as the years went by. In our case it outlines some of the characteristics of autism and some of the misunderstandings about why our boy ran:

  • the thrill of the chase,
  • to send the message that he wants our attention – now,
  • the sensory thrill of both nakedness and running in the sun and wind, and
  • the satisfaction of running to place on an established path that also provides some comfort and/or sensory input.

I developed a number of theories about the poop gift in the front hall but they key lesson it holds in the bolting behavior part of the story is that he was angry and scared about going to preschool and didn’t have the speech to get that across. I completely underestimated how much he understood about what that day meant. He’d seen me drop his sister off at the school and did not want that for himself. He didn’t want to separate – he still doesn’t – and he knew exactly how to get my attention even if the full message didn’t come across. He used every tool he had to tell me he wasn’t ready for preschool, but in those days I was still under the impression that we were on a fairly typical trajectory – even though we had identified a significant speech delay and autism had come into the conversation. Despite the many concerns I had (too little speech, an inability to make choices) the professionals we were consulting at that time insisted that he didn’t fit the DSM criteria. He was too engaged, too empathetic and loving, and there was no hand flapping flapping or lining up of toys. No one talked about bolting or wandering in 1998.

In the home setting he would bolt or hide when things were not going his way – for us it was and is a deliberate act. At school my assessment was that he was looking for attention, sensory input (the chase!) or to alleviate anxiety caused by speech skills that were developing too slowly for the ideas in his mind. It was a way to say that he wanted to negotiate for something.

One afternoon when he was in first grade after school my friend Ellen called, and the conversation began with,

“You didn’t hear this from me.”

I knew the school program was not what it needed to be; tensions were high with parents, teachers and staff as it became increasing clear that two children were regressing and showing increased aggression. Unlike the Early Childhood Program, the elementary school teachers had zero training to allow for effective inclusion. We were standing on the sidelines, still trying to figure out what we needed. She told me  that she had seen my son out through the glass doors of teh school, standing on the unfenced playground (which was adjacent to a vast open field with tall grass that with wooded conservation and on the far side). Knowing she was close enough to get to him if he ran, Ellen said she stood at the window and watched as he weighed his options while she checked her watch to see if he would bolt or if someone would come looking for him. Ten eternal minutes passed before she saw a teacher come and bring him inside. He had tried to get her to play tag, but he did not bolt. My heart still lodges in my throat as I write about it – it is the story that came to mind when I heard about Avonte. Ten minutes is a lifetime, enough time to get permanently lost in a rural community, enough time to run into the street, enough time to be scooped up by the wrong kind of person.

Every child – every person – is motivated by something when they run away and very often we figure out what it was only when it is over and they are found – or not. Trains, water, animals, cars, can lure them away. Fear, crowds, noise, and defiance can drive them away. We’ve been lucky. It’s as simple as that. Lucky that we (and our friends) saw things when we did, lucky that he was motivated by things we could often figure out, lucky that he’s developed enough communication skills to talk through the things that make him want to escape, and lucky that he and we have not, so far, been in the wrong place at the wrong time.

Doorknob motion sensor alarm. It's ridiculously loud.

Doorknob motion sensor alarm. It’s ridiculously loud.

The takeaway for me on our experiences is that people with ASD are most likely to happen when there is change, conflict, transition and confusion. For us, bolting and leaving seem to happen when neither one of us is entirely comfortable with the situation. Until very recently, when we traveled we brought door alarms: motion sensitive devices that hang on door knobs and beep when anyone tries to turn a door handle. We still don’t have enough reliable GPS services in our area for wrist devices to work for us, but he carries a cell phone and he knows how to text and make and answer calls. But even though he can do all of those things and is now taller and stronger than I am and can ask for directions and cross a busy street by himself, my hand still twitches to hold his when we are together.

I’m not sure that will ever stop.




Try This on For Size: April is Autism Understanding Month


Hugs stave off the winter chill during a bittersweet goodbye. See you in springtime.


First they called April Autism Awareness Month (many still do). I knew I was all too aware. Now they called it Autism Acceptance Month. I know I accept it well enough. But I’m still trying to understand a lot of things about Autism: why it’s such a wide spectrum and whether all of it is autism or just a conglomeration of neurological diagnoses that need be to be sorted out. I also accept is that it will take forever to understand. So that’s the work I am doing this month: trying to develop a better understanding of the things about Autism that still need work, in contexts large and small. I want to think out loud about the issues and questions that society ought to know so that families living with autism are not pitied, ignored or marginalized while we figure out where the many types of people on the spectrum fit, what their gifts are, and how they need help.

IMG_7953April is a good month for developing understanding – and patience. For those of us in climates where winter has us in a death grip, April is the time that we long for the warmth of summer and totally overreact to the emergence of any sign of spring (watching the snow and ice recede, camera in hand, looking for crocuses). April brings Easter (usually) and other rites of spring that signal optimism about the future. April reminds us, gently, painstakingly, that we have more capacity for joy than we thought after a winter in which our capacity for everything joyful has been sorely tested. April is hope. Let’s start with that thought.

Easter Monday, April Fools’ Day, Autism Awareness Month. The Mind Reels.


Renewal and irony and reality all converging on a single spring day. Melting snow, green shoots, black earth. The extremes of New England’s seasons are the metaphor I cannot ignore.

I tend to roll my eyes on the awareness month for anything, and even more so for Autism Awareness Month because I’m conflicted about foisting upon the world an awareness of what I consider to be our private business. But making the world more navigable for our boy is part of that business and thus I need to try to find ways to use the opportunity that autism awareness month presents without seeming insufferable and needy (good luck with that, I know). And what is a blog for if not for saying something that I think might be worth reading? I ask myself all the time why I do this and most of the time the answer is that I write about it because I can’t not write about it. From my perch, autism awareness is as much about the journey and the humor and poetry borne of the angst and the crazy – it’s not nearly as helpful as what others are contributing to the dialogue, but it’s what I have.

So in a nod to the everyday awareness that we have of autism, I’ll post something every day (an essay, photo, or link to those who are saying it better than I) in April in hopes that something and interesting and good will come of it.

Today, John Elder Robison continues to fight the good fight for people with Asperger’s Syndrome in the wake of Sandy Hook.