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.




Letter from the Soapbox: Blaming Budget Woes on Special Education


This is a verbatim exchange between me and a local taxpayer – I have a conversation like this with someone every time we have a budget crisis, which is about every four years. It appeared within a larger thread about local school district funding issues. We may be facing a tax override. I changed the name of our town to Mayberry, for what’s worth. I probably should have changed it to Peyton Place.


Is it really true that nothing can be done about Special Ed?  I have friends with kids in special ed and they say that Mayberry is widely known as a school system that approves every parental request and is easily “gamed” by savvy parents.


I feel compelled to ask – how does one “game” special education? After 15 years of special education experience in Mayberry, I have yet to come across parent who thinks that getting special education services is something to be “gamed.” If that means the School District is meeting their kids’ identified needs, that’s called education. The idea that parents could dupe the school district to provide for a child who doesn’t need services is a little far-fetched, don’t you think? Gaming indicates you’ve fooled the system into giving you something you don’t deserve or haven’t earned – is that a valid way to look at special education? Wouldn’t you think that a parent with a child with a disability would work hard to make sure they got the help they need – and that they’d try to be savvy about it? That’s good parenting. I wonder, too, how your friends with kids in special ed feel about you sharing their view of the system.

Mayberry does not approve every parental request, and the District has the legal fees to prove it. (And the eligibility process is complicated, especially when people don’t agree.) In fact, the increased expenses in 2012 and 2013 are the result of the District being so woefully out of compliance in key areas that it lost a number of kids to private placement (several of whom have since been brought back in District because the leadership saw fit to build the programs that were previously lacking). 

Here is the key point: because special education fees were not reported to the School Committee by the Superintendent and Business manager (both gone now), there was no way to budget for them and they were then paid for in ways not apparent to the School Committee. That does not mean that those expenses were unwarranted – accounting errors are not the same as providing services that were not needed or mandated by the state. As Barbara Rich pointed out last week, Mayberry’s expenditures and out of district placements are in line with the state average.

Finally, transportation expenses play a huge role in this process, and that’s something over which parents have zero control from a financial standpoint. When the decision was made to go to an outside bus company, the only issues parents weighed in on were communication and safety; parents had no way of knowing which was the better decision from a budget standpoint.

The problem and responsibility lies squarely with those responsible for building and funding a budget, not with the people who determine for special education services.

Please vote yes, for all the kids.



I would like to thank all the parents who reached out to me (both here and elsewhere) to talk about their experiences with Mayberry’s special ed program.

From what I’ve heard, it sounds like the current system is severely flawed and is hemorrhaging money.   It looks as though the schools are aware of it too, and that Mayberry has an unusually high number of children diagnosed with serious disabilities: [link to a report called the Walker report that audited special ed services in 2012] As a taxpayer who spends considerable amounts of money to educate your [emphasis mine] children, I hope that the wasteful aspects I this program can be eliminated.  I have seen a number of studies that have concluded that the most effective special ed systems actually spend less money, not more.


Everything I said in my last post lines up with the Walker study, which covered the time when the District was out of compliance and lost kids to outplacement – what confuses me is that you said earlier that Mayberry hands out services to anyone who asks but the audit shows that is not the case. What it shows is that even though, at the time, Mayberry had more kids than usual out-placed, the overall percentage of the budget going to special ed was still within one percentage point of the state average. Which means that the District was serving more kids in district at a lower rate than everyone else. The report also noted that the District’s inclusion rate is above average and recommends more training to support teachers in this venture. It doesn’t say anywhere the money actually spent here is wasted. There is a higher number of kids but the overall percentage is virtually the same…so that might mean that Mayberry is spending its dollars pretty well. Also, a district this size cannot build a program for every kind of disability, which means that it is sometimes more cost effective to send kids out than build a special therapeutic program for very few children. There is no question that the District can do better, the question is what we mean by better and how one identifies waste – this is a leadership issue and not one that can be addressed with any effectiveness on a town list. I greatly admire those who serve on our Town Boards and Committees to make sure it all gets done in the midst of so much second guessing.

As a taxpayer who spends considerable amounts of money and time investing in all of the children of Mayberry who are the future of our towns and the good teachers and schools that keep property values high I feel that my time and money are well spent. I am not elderly but I gladly pay for services for those who are and I place a certain amount of trust in the government to makes sure those services are maintained; we all invest in our community and I cannot help but take umbrage when people with disabilities are singled out as drains on the system. The education and support we provide to our children give them a greater shot at independence and productivity then they have had in generations past, when some of them would have been in state care their entire lives. I made this exact same argument when my child was a preschooler and I find myself making it here again when that child is in high school and also out working in the community, thanks to the teachers and staff of Mayberry. Thirty years ago that would have been impossible. It’s an investment, it pays off, and all of us are worth it and better because of it.




If you look at the history of budget cuts in the schools it is clear that they have been cutting programs for *all* students for several years in order to pay for special ed programs.  The current initiatives on the table will not bring back those programs.  I can’t help but think that this has had a negative impact on our public schools quality and reputation, which has in turn contributed to stagnant home values.

And while I agree that everyone deserves a decent education, I’m not sure that any student deserves to have 2-10x as much taxpayer money spent on their education vs. other students who might be equally deserving.  Have the current programs been tested for outcomes?  Are we really getting results for the money spent?

I think we have a right to know the facts, not just anecdotes.

What gets measured, gets managed.


I would argue that it is not at all clear that they are cutting regular ed to pay for special ed – I would argue (and the data supports) that taxpayers have been paying in less than they once did and so has the state. I would argue that the town has made good investments in infrastructure and open space and that those have also appeared on tax bills that have been going up. I would also argue that more teachers, more tools, more differentiation in an inclusive classroom make it a better educational environment for all learners – special ed money does not just help special ed students, and much of the special ed money comes from the state and federal government when they reimburse the school district for mandated services.

So, you’re looking for return on your investment? That would be an interesting thing to measure. MCAS scores are public. Mayberry does very well. Student progress on education plans is data driven and tracked – alas, individual citizens are not entitled to stories or anything else about special education children’s performance so that they can measure up to a taxpayer’s idea of worthiness. Maybe the kids who go into service jobs cleaning hospitals and schools and office buildings aren’t worth teaching anything more than how to fill out a time card and open a bank account. Those folks only deserve a decent education, not a good one, am I getting this right? At what point is someone useful enough to justify the taxpayer investment? When they get into college? When they graduate? When they get a job? When they start paying taxes? When they are wounded in battle? Or maybe I can leverage the value of my bright, typically developing children against the one with the developmental delay so the tax investments even out. Would that be satisfactory? 

I would be hard pressed to measure the value of the experiences shared by the drama guild kids about their inclusive drama class (they took their views to the school committee, clever children) or the unified track team when they won a team gold medal last spring. Yes, that’s a story – and a measure of success. Winning. For some people winning counts. For some people, being welcomed on the field with and by their typical peers is the victory.

But, lucky for most of us, the fact is no one gets to decide which child is worth more than the next. Our society and our public schools are built on the foundation that everyone is entitled to a good education whether they “deserve” it or not. Just because we are fortunate to have the money to pay taxes to fund good schools doesn’t mean we get to pick and choose who is worthy of a public education. We rely on good public servants, administrators and teachers to help us decide the best way to provide the best education we can. An open and ongoing dialogue with those people on a regular basis is the best data you’ll find on how our schools are doing. How you view success is entirely up to you.




To further clarify, my biggest question is abut the quality of services that kids in special ed are receiving. From what I’ve heard (could be hearsay, but from very impassioned parents), considerable amounts of money have been spent on school mandated special ed initiatives that have actually HURT kids who needed help and made their lives and educations worse, not better.  I would absolutely classify that kind of spending as “waste” that should be eliminated.


There’s no way to address any of the issues you now raise (I don’t recall quality coming up at all before) in this venue. School mandated services that hurt children? The district has a state mandated Special Education Parent Advisory Council that exists specifically to address these kinds of concerns (and it’s totally free!). Please ask the parents involved to contact one of the officers to get answers and advice about how to understand or file a complaint about any programs that affect their children or their schools. SEPAC is there to help: website link to SEPAC

In the meantime, I wouldn’t throw the baby out with the bathwater based on heresay. 



I’m sorry but I don’t see how this wins my vote to raise taxes at town meeting.  I started out being totally in support of raising the funding the schools, but having some questions based on what I had heard and read about the budget (including the audit which stated pretty plainly that most of the budget crisis has been due to poor tracking of rising special ed costs).  The answers I’ve gotten here have turned me pretty strongly against this initiative.

It doesn’t sound like the supporters of this initiative are looking for any accountability from the schools at all….from your statements it sounds like you think they are doing just fine, that taxpayers just aren’t paying enough, and that the schools shouldn’t have a good handle on what their budget really is and how it is likely to increase in the future.

I’m sorry, but I prefer to think carefully about every vote at town meeting that raises our expenditures.  And I believe we have a right to know how well the system is working since we are being asked to pay for it.


I am not trying to win your vote for anything, but I’m doing my best to be sure that there are as few people as possible misinterpreting the facts in the same way you seem to be. 

A failure to track rising costs does not mean that those costs are unreasonable. Working to contain rising costs is a goal but the mandated nature of special education costs puts many of those costs beyond the District’s control. Again, the error was that the District failed to budget for those (and other) costs because the business office failed over the course of two years to inform the school committee that the budget was not written to accommodate them. There are some costs that can and should be contained but it is wrong to correlate the budget crisis with needs the special ed kids themselves, which is what you have done by implying that some kids are more worthy of our tax dollars than others. 

I never said they were doing just fine but I did say that there is no evidence to be found in the Walker report that they overspent on special education – it was me who said that transportation is an issue. I never said they deserve a blank check but they deserve more than they get now – according to the School Committee the numbers the towns have been underpaying for years because the district leadership was not forthcoming about what the real expenses were. There absolutely must be more transparency in the process overall but I will say as many times as necessary that this budget crisis was not created by unnecessary special education costs – it was created by a failure to report, budget and pay necessary expenses (and other costs) properly.



I found this exchange maddening and instructive, because I think it presents a lot of issues that face a lot of school districts right now. Our budget crisis came from a rather unique set of circumstances, which I try very hard to explain, but perhaps not quite hard enough to convince this resident.

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.