I want everyone to introduce themselves. After you've introduced yourselves, please respond to the basic prompt: How does a notion of neurodiversity affect caregiving? How, in other words, does a knowledge of the central ideas in disability studies (chief among them a refusal to pathologize difference) shape your role as a parent or a sibling of someone with autism? Your post will thus consist of a personal introduction and a meditation on these questions.
James C. Wilson here. I'm professor of English and journalism at the University of Cincinnati, where I work with a good many disabled students. More to the point, I'm the father and primary caregiver of my 28-year-old son Sam, who happens to be autistic among other things. He and I have a very close relationship (too close, he'll often tell me, reminding me that I am too old for him). My last book, Weather Reports from the Autism Front: A Father's Memoir of His Autistic Son, is really a book about my education, that is, learning about the lived experience of autism from my son and other autistic adults, including many of the prominent bloggers on Autism Hub and elsewhere. They have educated me about neurodiversity and what that means in everyday life, so much so that the notion of neurodiversity shapes pretty much all of my interactions with Sam and other autistic adults I encounter at school and in the community. For example, I understand that Sam has a difficult time with crowds, that he gets nervous, that he doesn't like to try new things, that he barks when something's not just so, and that he will sometimes bang his head when upset. I accept all of that, because that's who Sam is, and I don't try to change him or force him toward more normative behaviors. It helps that I've never been very invested in normative behavior (possibly because few, if any, of my extended family would be considered "normal" anyway). The behaviors that people with mainstream attitudes find problematic, I've learned to see as difference. I don't try to change my son (I can't anyway). I want him to feel comfortable in his own skin, with who he is: a terrific young man with a wicked sense of humor and a zest for life. So what if he barks on occasion? Who doesn't? More will follow.
I'm Kristina Chew, an Assistant Professor of Classics in the Department of Modern and Classical Languages at Saint Peter's College in Jersey City, New Jersey. Tomorrow I'm going to be the seventh person on a panel about "making college accessible" that our Dean's office has put together for the faculty. I'll be speaking about advocacy and self-advocacy, disability rights, and social justice, which is to say, I'll be talking about a lot of things I've been writing about since I started blogging about my still-11-year-old-for-a-few-more-days son, Charlie, in June of 2005. My blog's name and URL have changed a couple of times since then, and I'm now blogging about disability, education and policy — and life raising an adolescent boy on the autism spectrum — at http://www.Change.org.
I started blogging (1) because, back in June of 2005, Charlie was struggling mightily and my husband, Jim Fisher, and I felt terribly alone; blogging was a way to reach out and meet and commune with others who've been through, and who were going through, what we were. Originally I only wrote about life with Charlie. As he's grown older, I've sought ways to make blogging the kind of advocacy that is needed — — not about vaccines and advancing hypotheses about autism causes and cures — but about making real changes in society for individuals with disabilities, whether in terms of policy and legislation; of housing and employment; of schools and education; of attitudes and understandings about what autism — and life raising a child who is on the moderate to severe "end" of the spectrum — is.
It's a life that's not a tragedy, nor a death sentence. It's not the life I expected and it's not an easy life. Jim — a cultural historian of American history at Fordham University — and I have changed our lives in ways we never could have imagined to do our best by Charlie and to ensure that, wherever he goes, we go with him. And writing about this life was (2) the other reason I started blogging: I've long talked about writing a "book about autism" and this summer (we'll see what happens) I mean to do it, drawing on the years of blogging and inspired by reading the book Jim has been working on for the past ten years, On the Irish Waterfront: The Crusader, the Movie, and the Soul of the Port of New York. It's a book about the port of New York and New Jersey which is something like sacred terrain for Jim and Charlie and me. Jim's book is set on the West Side of New York and Hudson County — site of Jersey City and Saint Peter's College — and these are the places where, since we returned to New Jersey from the Midwest in search of the best education for Charlie in May of 2001, we have had too many walks and treks and adventures on the street and in the subway, in the community, in the world — and Charlie has always been with us.
And making sure that Charlie will always be able to walk in the streets amid others, to not be isolated, to be included: This is the start of my advocacy. It's also the metaphor that I always draw on to describe life with Charlie. Life raising Charlie has been a journey full of as many twists, setbacks, and mythology as Odysseus ever encountered in Homer's Odyssey. It is indeed not a tragedy, nor a dead end, but full of a vibrant richness that I can't imagine living without — and making sure that everyone understands how poor we'd all be without that richness is a big motivator behind my teaching, writing, and advocacy.
A special thanks to Ralph, the first person who introduced me to "neurodiversity," and to Mark, who organized the MLA panel where I first started to think that autism and my background in literary-critical studies didn't have to be mutually exclusive.
I'm John Duffy, an associate professor of English at the University of Notre Dame. My interests are in rhetoric, literacy, and disability. When my son Sean was diagnosed 19 years ago, we were living in a small town in Wisconsin. There was no Internet, or at least not that I knew of, and so I was initially reliant on the small collection of books in the local library that dealt with this bizarre condition called "autism." Those books, most of them written in the 1970s or earlier, weren't particularly cheerful. Indeed, they were about as grim as it gets. I remember one pathos-charged passage about "the child who is always apart" and another brightening line about "the wound that never heals." Collectively, they seemed to forecast a strange, dark life of grief and regret. That's what I remember about those texts.
Professionally, I'm interested in the history of texts like those — where they came from, what they assumed, and what kinds of identities they imagined for autistic people and their families. I'm interested in how they have changed over the years and the ways in which they have been influenced by the writing of autistic and Asperger's authors. Autism and rhetoric seem to me inextricably linked.
About my son I can say very little. He's a private person and would not want me to write about him on the Internet. I can tell you that he attends college, voted for Obama (he is quite open about that), and derives intense pleasure from the Stephen Colbert show.
I look forward to the conversation.
Hi, I'm Deb Cumberland, and I'm an English professor at Winona State University.
I don't know that the concept of neurodiversity affects my caregiving now (I don't have significant caregiving responsibilities) or did in the past in any significant way. This is partly because when Karl was first diagnosed with autism, in the early 70s, the concept of neurodiversity was nowhere on the horizon. There was also very little literature on autism and much of it blamed cold mothers for the condition. We knew this wasn't true, but it was very hard on everyone emotionally. Karl was passed off as either schizophrenic or mentally retarded in spite of family protests. Today there is a lot more known, and there are a great many methods of treatment — some worthwhile and others not. Of course it makes considerable difference whether there is mild or severe autism. Our family gave Karl a lot to do and kept him at it. That was our caregiving, and it was much more effective than the drugs the psychiatrists kept pushing at us. It also gave him a sense of belonging, I think. He had a lot of energy, and that energy needed to be consumed. Karl had an unbelievable memory, and that made him a very good paper carrier. He also was the world's best detassler. We also encouraged him to go out for cross-country because of his endurance; he won a letter, which made him very proud. I would train with him, running behind him — far, far behind him! He never finished first, but he never finished last. Gradually there was some improvement, and the rocking and head pounding and pen twirling, etc., lessened.
Karl was simply my brother. His autism did cause considerable stress. My parents were always pressured to institutionalize him, and that is what people did then and were encouraged to do. I do not judge those who did, but I am glad my parents did not, for I feel he would not have made the gains he did toward independent living if he had been institutionalized. Many people thought Karl was crazy (I am sure that there were people who thought we all were). But my values, and the way I judge the world, are now based on how people treated him then, and how they do now. My parents tried not to let his autism consume the family as can certainly happen. People came over to the house, and I had friends over, but they tended to be friends that I instinctively knew would understand. Undoubtedly I became more introverted and private as a result of my experiences, but also, I think, more thoughtful and compassionate. I still model my relationship and caregiving with him on the patterns of my childhood: burning up energy. He is the world's best garden weeder. I ask him if he would like to do that, and he says, "Oh, yes, that's fine," and afterwards we go have pizza and ice cream, and then he walks around the lake and takes 500 pictures of the ducks — yes, that's about right. There is no duck that has not been photographed here. Emotionally it is often difficult because he will never ask me how I am and I will never really know if he likes to be hugged, but I do it anyway. It simply is what it is. But in so many ways he is a miracle. He can live on his own and seems, to the best of my knowledge, content. He holds down a job and seems proud of it. He has a friend he plays checkers with every Wednesday. And in large measure I do believe it is because we treated him like anybody else. Is that caregiving based on neurodiversity? I don't know. I'm not quite sure, yet, what exactly neurodiversity means. There is a great deal of individuality in everyone's story, I think.
Hi, I'm Susan Etlinger, and I'm a writer and marketing consultant living in San Francisco. Since 2007, I've chronicled a lot of my family's journey on my blog The Family Room at http://www.susanetlinger.typepad.com/.
When my son Isaac was first diagnosed with autism, I had a hard time accepting it. It wasn't so much the notion that he had developmental delays — we knew that — as it was that who he was — playful, mercurial, hyper-focused, intensely internal — could add up to a pathology. If that was true, who was he? And who were we, who prized his himness so intensely?
We accepted the diagnosis and the services that came with it but rejected its implications. And we didn't utter the "A" word for a good long time. When Isaac was very little, I'd call his name a few times before he'd look up. My husband, a writer and historian, does the same thing. Or Isaac would examine his hand with almost scientific care, and I would remember sitting in my first grade class, mesmerized by the tree branches swaying gently in the wind.
"He has a lot of strengths," the early therapists said to us. "He learns very quickly." And he does, and we're grateful for that, but as he develops and becomes more aware of the workings of the world, his anxiety intensifies as well. Recently an incident occurred that reminded me just how little the rest of the world understands. Someone said something unkind about him in his presence, and I found myself hoping that — just this once — he didn't notice.
Now, nearly four years post-diagnosis, I no longer fear autism, and while I have a healthy respect for the challenges that people with autism face, I also have a deep gratitude for its gifts. We are on a continuum, you and your children and my husband and son and I, and we are in this for the long haul. We have a great deal to learn from each other.
On my blog today, at http://www.esteeklar.com (The Joy of Autism), I was thinking in retrospect about how my parenting style of Adam has changed over the past seven years — from the time of his diagnosis to today. The post is titled "In Retrospect" should you be interested in reading it, as I will not rewrite it here.
Accepting autism is accepting my son's true nature as I would accept myself as I am. As a woman going through a recent divorce, I am forced to review my female life and all the stereotypical behavior I've employed in order to be accepted by a man. The concept of diversity is no different for women, people of color, of different religions, heritages or disabilities.
While we are all different with inherent natures, we are all human. As such, my short answer to how I raise Adam is to speak of how I've changed my ways and means of raising him. We don't "do therapy" anymore. Adam goes to school with an assistant, and we find ways to teach him what he needs to learn in both school and in life. We participate in every aspect of our community by finding ways in which we can do so.
Attitude is everything, and it can change in profound ways with time.
I'm an English and film professor at Loyola University Maryland, where I teach several courses with units on disability. Over the past five years I've incorporated autism and cognitive disabilities into my scholarship, in 2008 publishing Autism and Representation, which gathered essays on autism and the humanities drawn from a 2005 conference I organized. But why am I interested in autism? Because of Cameron, my nineteen-year-old son, who lives with "moderate to severe" autism and displays numerous unusual behaviors, including clapping, a string obsession and lots of loud vocalizing; he communicates in single words and (recently) with a Springboard AT device. It has been for me a long and difficult journey to begin thinking of Cam's autism in neurodiversity terms, and I still have reservations about certain aspects of the neurodiversity standpoint. In any case, my attitude adjustment has probably derived as much from observing Cam's maturation as from any theory. I wonder if this emotional component — learning to see and accept your loved one as he or she is, rather than trying to normalize or change the person — is really much different from what parents of maturing neurotypical children experience. At some point, every parent has to accept that the kid is just who he/she is, not a vessel for the parent's dreams and expectations.
I'm a cultural anthropologist working in an Occupational Therapy Program. My older sister Hope Block has communicated through supported typing (facilitated communication) since the mid-1990s but spent a long stretch without a decent device and unwilling/unable to type. She now lives with a roommate in Newport, Rhode Island. You can learn more about her and see pictures of us and other family members through the link below: http://www.advocatesinaction.org/movies/HOPEB.wmv
For the past year my sister, mother (retired special education teacher Barbara Kilcup) and I have been writing collaboratively and presenting at conferences.
Many thanks to everyone for their introductions. If neurodiversity, in its simplest meaning, connotes a willingness to make room for difference as difference (not pathology), then begin by talking about how you made room, what that process was like — its joys and challenges. How did you accommodate yourself to autism? How has your own understanding of it evolved? In order to combat the notion that neurodiversity is a concept only applicable to those at the so-called "high-functioning" end of the spectrum, or is simply a Hallmark Card-like glossing over of the tremendous difficulties that autism sometimes presents, please speak as honestly as possible. And please try to respond to, or at least reference, your fellow participants' posts whenever possible so that something like a real conversation occurs.
The Defenestration of Dogma: Infusing Neurodiversity
"Our family gave Karl a lot to do and kept him at it. "
Deb wrote this deceptively "simple" statement about her brother and how her family cared for him. Deb and Karl lived at a different time from us now, and Karl's and my son Charlie's diagnoses are somewhat different. Yet, even though there are many more resources available to us now, and there is much more "awareness" (such as that is), learning to think about autism and raising and teaching a child on the autism spectrum from the perspective of neurodiversity has profoundly changed things for Jim and me.
My son has done ABA — Applied Behavior Analysis — since he was just over two years old. While there's a general view out there that ABA and neurodiversity are strange bedfellows — can the theories of B.F. Skinner sit down with a belief in "autism as difference" and being "differently-abled"? — I think they can. There are philosophic discrepancies and, to be quite honest, we would have preferred (certainly at the outset) not to have done ABA. Jim and I are humanists: Jim, a cultural historian; me, a Classicist and a "literary type" at the core. But, when Charlie was 2 and struggling infinitely, ABA — as done by warm-hearted Minnesota college students — helped him. And those young people's good efforts helped Jim and me to see how we might help Charlie.
We've twice drawn on the (infamous….) Lovaas agency to provide Charlie's home program. Perhaps because we invest quite a lot of ourselves — in terms of programming, in terms of time, in terms of a constant healthy questioning of what in the world we are doing — ABA therapists for Charlie trained from the Lovaas agency have been kind, friendly, and always willing to start with Charlie where he is. I do think it is possible to infuse some neurodiversity into ABA and into the teaching of students on the spectrum in general. I don't anticipate that everyone will agree with me (yes! what's a blog without some healthy conflict).
I do know that ABA has been mostly, if not only, successful for Charlie when therapists have thrown the textbook and the rigidity out the window ("the defenestration of dogma") and started with him and where he is, spending time sitting on the floor with him and getting to know how he speaks, in words and in non-verbal ways. The ABA therapists and teachers who had limited (if any) success teaching Charlie started with "dogma," rather than the boy before them.
Charlie's best teachers and therapists infuse neurodiversity implicitly into their teaching. His current teacher is a hard-core ABA "type" who is quite aware of Charlie's sensory needs, artistic ability, and the vast extent of his body language, and he is probably the reason Charlie's still in public school rather than being sent packing to a certain "center" in south Jersey that we've heard about, but only in regard to "lawsuits" and "investigations by the State." Charlie's current teacher came to teaching, and to autism, late. Jim (who knows how to ask a good question) learned that she had a sound studio in NYC and "because of something with her daughter" (she also has a son), decided that teaching autistic kids was what she had to do. She is intense, a great teacher, and every bit as dedicated and as fond of Charlie as his original team of ABA therapists.
They stood him on their shoulders. They gave him Jetson rides in a purple plastic chair. They loved him and they wanted to help him and they loved him, perhaps most of all on the hard days.
Jim and I most certainly do and so, I know, does Charlie's teacher. We see how different Charlie is, as well as the difference he makes, and we know the world and we ourselves are realer, richer, better for it. We embrace his difference and seek to teach him to use his different abilities to move forward, to learn and to grow.
On Passing and Neurodiversity
My journey to neurodiversity was long and sometimes painful. My son Sam has spent (and still spends) much of his life trying to pass as "normal." Sometimes he succeeds, but usually not, because his appearance and behaviors identify him as obviously disabled. Immediately people see him as an object of pity, curiosity, disgust, whatever. Sam, of course, notices their reactions and will often act in such a way as to be taken out of the particular social situation. In short, Sam can't pass, even though he wants desperately to be accepted. No, that's not quite right. Sam wants to be ACCOMMODATED so that he can be accepted.
Like most parents, we've always wanted Sam to be included in school and community activities, but too often we found that he would only be included insofar as he was able to pass. So that, for example, Sam was allowed to ride the regular school bus with the other kids in the neighborhood until some of the kids made fun of him and he barked or otherwise acted out, at which point it was Sam who was kicked off the bus, not the kids who made fun of him. Likewise, Sam would only be mainstreamed so long as he was able to pass, that is, participate in the same activities and follow the same curriculum as the other students. There was no discussion or awareness of difference: different ways of perceiving and learning. The result was predictable, as Sam was repeatedly kicked out of class, sent to detention, suspended. The same thing happened at summer camps, where Sam couldn't pass because he was unwilling, sometimes physically unable, to play games or sports with the other campers. After Sam "graduated" from high school, he had the same experience in workshops and vocational schools. He couldn't pass because he couldn't or wouldn't do whatever his job coaches and teachers wanted him to do. Again, there was no effort to accommodate Sam: his needs, his interests, his expectations.
So, after 20 years of regularly having to drop everything in order to go pick up my son after yet another ejection, I am not very sympathetic to all those well-meaning (I guess) folks who want disabled people to pass. I am reminded of one of my African-American students who graduated from a nearby suburban high school not long ago. He said he was usually the only person of color in his classes, and that, for example, some of the other students would pat his head and say his "nappy" hair felt like that of a dog's at the very same time his teachers and school administrators asserted that the school was absolutely color blind in that it did not take into consideration race or ethnicity. That, to my student, meant that he could not claim or recognize his heritage; it meant that difference was obliterated in the name of a superficial — and false — sameness.
Likewise, when we expect disabled people to pass, aren't we essentially erasing difference, including neurodiversity? Shouldn't we be insisting that differently abled people and neurodiverse autistic people be accommodated? The fact is that some disabled people with so-called invisible disabilities can pass, but others can't. For me, it comes down to a question of solidarity and the struggle against ableist discrimination. My son, for example, wants to be accepted for who he is; he resents and resists being expected to pass for who he's not. I support him in this, even though I realize that passing is much easier (for those who can) than struggling against a mainstream society that neither accepts nor values neurodiversity.
Neurodiversity and Acceptance
Does recognizing autism as itself require only appreciating difference as difference? Or, as James Wilson implies, does accommodation first of all mean recognizing the fact of disability? Before one can adjust expectations or learn to understand differences as something other than (or at least in addition to) "pathologies," one must come to terms with the fact of impairment.
That recognition was difficult for me. Like Kristina and Jim, we maintained an ABA program for our son for several years (this was in the mid- to late-nineties, when ABA programs tended to be more rigid). After three years of it, our outreach supervisor stated that our son wouldn't benefit from further training and ended the program. We read this as "giving up on him." So we created our own program and kept it going for two more years. But she was really telling us that we should stop expecting Cameron to become "normal," stop putting him through intensive work that would yield little benefit. Most of all, she was trying to force us to accept Cam's impairments as such, not as mere differences (or as "delays"), which is how I had been seeing them. Although I didn't want to hear that truth, I needed to hear it.
Another example. As a fan and former player, I was eager to teach Cameron how to play baseball. Over a couple of summers, he learned to hit a wiffle ball off a tee very competently, but he hit only when I insisted, and never wanted to run around the bases, play catch or do any other baseball activities. I persisted anyway, until one day, while chasing him around the yard with a bat in my hand, I suddenly saw myself as my own father, who pushed me to excel at sports (football, in his case) in disregard of my own lack of desire or ability. Originally I'd wanted Cam to play, so he could have fun and interact with other kids, but then I realized that this desire had mutated into a means to assure myself that my son wasn't disabled — and that I, therefore, was a competent father. In short, it was a product of my desire not to be disabled myself.
In the wake of these recognitions, I slowly came around to accepting my son's disabilities, and to understand that often parents' needs to "cure" their autistic children derive at least in part from their own feelings of guilt and stigmatization. We don't want to be disabled, so we insist that our kids are not or try everything to "cure" them.
Perhaps this sheds some slant light on the neurodiversity perspective. We should not burden our loved ones with unfair expectations; we should not require that they be like us; we should accept their autistic selves as their real selves. These recognitions help us to accommodate their differences. But we should also ask whether the insistence that autistic differences are just differences issues from respect for our loved ones' identities or from a need to reassure ourselves that we aren't disabled.
Before we can accept our loved ones, we first have to see and hear them as they really are, not as we want them to be. And we have to see ourselves honestly, too.
I, too, have used the term "impairment" in different articles, even though it comes dangerously close to "deficit" and brings us once again to disability as pathology. I stopped using the term a few years back because of experiences I've had with my university disability services office. So many of our students with disabilities (we've had several autistic students) have had a difficult time getting the services and accommodations they need to succeed academically. Unsympathetic professors and administrators have argued that these students have very real impairments and thus can't possibly do the work required by college level classes. That their impairments were "real" and couldn't be finessed became the official justification for denying student requests for note-takers, large print class materials, more time for exams, and so on. In other words what happened was that impairment was used to deny disabled students the accommodations they needed. As all of us who work in the field of Disability Studies know, without accommodation impairment becomes disability.
Impairment, Disability and "Fixing" People
My anthropology colleague Devva Kasnitz prefers a division between the use of the terms "impairment" (e.g. diagnosis, condition, physiological difference etc.) vs. "disability" (socio-cultural-environmental experience resulting from having — or being considered as having — impairment). She also will not use the term disability in the plural because it then starts becoming a euphemism for impairment. I find this useful in trying to get my occupational therapy students to understand the difference between the two.
Yesterday I took my Disability Studies and Occupational Therapy class to visit the FREE players, a day theater arts habilitation program that includes disabled people with all kinds of diagnoses, including autism and Asperger syndrome. http://www.newsday.com/entertainment/stage/ny-etlede5554808jan29,0,7715025.story
I take students to this program to get them to question what the central trope of OT (meaningful occupation) means for disabled people and for those who provide services to them. FREE is one of those rare programs that is empowering for both providers and recipients of services. The atmosphere is thick with a shared passion for theater. I wish there were something like this where my sister lives.
I don't remember the stage where people tried to diagnose or "fix" my sister; I was not around yet or too young. It was the late 1960s. First, doctors told my parents it was all in their head, and then, when she started seizing and missing the milestones I was hitting despite my being 15-months younger, some diagnoses started heading her way. Not correct diagnoses, mind you. At first they thought her motor planning difficulties were the result of visual impairment, then she was labeled "mentally retarded with autistic tendencies." I don't know if her diagnosis was ever officially changed to autism. Many of her service providers, especially those who have been in her life a long time, still consider her intellectually disabled.
At least my parents were spared the current pressures on parents to "cure" their children. Well, to contradict myself, I guess part of me wishes that some of these new interventions were available 30 or 40 years ago. I wonder how much easier if might have been for her to communicate. I think about all those decades of segregated education and vocational "training," all those hundreds of hours being bussed far from home but apparently lucky to have any education at all, before it was legally mandated. Yet, she never had that pressure to "pass" that many parents and school systems seem to impose on the kids now. With all the negatives of segregated settings (and I'm definitely not a fan of them), how can we ensure our loved ones have access to spaces where tolerance for difference, including neurodiversity, can counteract some of the harms of "inclusion"?
Autism and Acceptance
How have you accommodated yourself to autism over time?
Autism has always been a part of my life. I think, when I was younger, I tried to pretend that my brother's autism did not exist, and that what was going on around me — the head-banging, the strange laughter, the belly pounding, etc. — did not exist. I would retreat into myself to block it out.
But as I got older, I think I developed more perspective and understanding, and began to write about it when I was in college. I also began to meet people who had siblings who were autistic, and that helped tremendously. I realized that I was not alone, and hearing other people's experiences provided greater understanding and compassion. Writing became a way of better understanding my brother and myself and his autism and of developing more empathy. Learning other people's stories helped me to realize more fully and deeply that this is a journey shared by many. I think that is the problem many in the community face — that of the crushing isolation that my family certainly faced in a small town in the 70s when so little was known about autism.
Bug or Feature
There was a point early on (Isaac was just turning two) when I felt perpetually disoriented. In retrospect, I think it was a kind of emotional vertigo: how could they (the therapists, the doctors, the child development apparatus that had just parachuted into our lives) possibly see the same child I did? Couldn't they just understand that, neurologically, he lived on a different spot of the bell curve, delightful and perfect in his own way?
True, Isaac withdrew in their presence, perseverated, flapped, and refused to meet their gaze save for a few sly glances when he thought they weren't looking. True, he looked utterly unmoved when they asked him to sort shapes or point or otherwise interact with them. But I knew better. I thought I did.
Driving home one day from a particularly heinous evaluation, I told my husband Jesse that I was starting to think Isaac was gaslighting us. As soon as we walked into any kind of office or social situation or, really, any new place, the giggly, mischievous boy we knew disappeared and this withdrawn, anxious, silent child emerged.
"It's almost as if he wants everyone to think he has autism," I said. "But he doesn't, does he?" "Sweetie, I don't know," Jesse would sigh, and we'd be back to that game again: the is-he-or-isn't he. Is-it-a-bug-or-is-it-a-feature?
That was before I knew about sensory integration and regulation and proprioceptive and vestibular input; before I accepted that there was a difference — a real one — between the way his brain and mine are wired. "He's so high functioning!" therapists would say, as if we'd won some sort of neurological raffle. The implication was clear: you should be grateful, and he is not — and will probably never be — like other children.
It was a lot to process.
There was never a question of accepting the boy, but the labels threw me. Impairment. Disability. Autism. I think that my avoidance of the "A" word early on was a fear that by accepting Isaac's autism, I would somehow betray his spirit. I didn't yet understand that I could love and enjoy him and get him the best therapies we could find and still reject the label.
I like to think that I have come to a point of acceptance now, by which I mean that I can and do say that Isaac has autism, and it no longer elicits the queasiness I felt when this all began. And I don't fear difference anymore; I don't smile more brightly at people with disabilities in a mistaken belief that they won't notice me overcompensating. That's all gone, and it's quite liberating, actually.
But, in all honesty, I still don't think of Isaac as impaired, and I certainly don't think of him as disabled. I just think of him as, well, him. I think part of it is that he's still so young — he'll be six this summer — and so he still gets a bit of a pass on behavior that will be much more obvious when he's 10 or 14 or 30 years old. And we get to mature along with him, for which I am very grateful.
I prefer to think of it this way: that loving him and learning how to see the world as he does have stretched my perception of norms. A lot more fits in there now.
Ultimately, the fact is that my son is who he is, whatever intellectual and psychic yoga I choose to engage in. "No, thank you," he replied to me at the mall last weekend when I asked if he wanted to take his sweater off, causing a nearby mother of two to stop cold and ask how I managed to raise such a beautifully-behaved boy. "Oh, give us a half-hour," I laughed, and I'm sure she had absolutely no idea what I meant.
Sure enough, not thirty minutes later he lay immovable on the floor of the cramped elevator as passengers tiptoed gingerly around him, shooting me annoyed, judgmental stares. It would have mortified me a year ago, but I'm much more blasé these days. "C'mon sweets, let's go pick up Daddy," I said, finally. He popped up, pushed the "up" button one last time, and followed me out of the mall.
Is this acceptance? You tell me.
For this round, I want you to consider the issue of education. Some of you have commented on this already, but the issue deserves a fuller treatment. What sorts of decisions have you made, or been involved in, with respect to the education of your child or sibling? Did you choose to fully include your child or sibling, partially include him or her, or opt for a special school or self-contained classroom? Please elaborate on your thoughts about what you chose and how your thinking has evolved. Obviously, each of you has a child or sibling at different stages, so try to attend to his or her present situation but also to his or her past situations. How about college? Has your child or sibling attempted post-secondary education? Do you dream of that for your child or sibling? Please also think about what you have had to do to make your child or sibling's education possible. What challenges or obstacles have you faced? What recommendations do you have?
Adam is now seven years of age, and he's never been to an "autism school." When he was diagnosed at 19 months of age, we began an ABA-based program at home, but that didn't last long unto itself. I learned as all parents of autistic children do about the numerous other "methods" that are out there. We tried many of the educational ones. We tried a diet for eight months, but saw no behavioral changes in Adam. I never tried treatments that I thought might be unsafe and discussed many of them with his doctor.
The one thing I learned quickly, to my chagrin, was that schools weren't too keen on taking autistic children unless,
- there are other disabled children integrated within the nursery school;
- they have segregated autism programs within the "regular" school (with the current focus on autism in the media, separate autism programs are being created in some institutions);
- you are willing as a parent to enroll your autistic child in public school (I am talking about Ontario, Canada here), where they will assign an EA (Educational Assistant) with your child for half a day while your child is placed in a segregated setting for the other half;
- you are willing to pay for your own shadow to attend the classroom with your child — only private schools might allow this option if you are a tenacious parent with deeper pockets.
Not all schools were open to the last option, even if they were private, in our experience. We were told that shadows crowded the classrooms, and I thought that was unfair. For, if my child was blind and all he needed was a seeing-eye dog, why couldn't he move about the community, which includes his neighborhood school, with one? I just don't see the difference between a personal assistant or any other accommodation that enables people to participate.
Thankfully, I've had resources to place Adam in a private setting with an assistant. I have never considered enrolling Adam in a segregated autism school where controlling his response and behavior is the primary goal. Adam cannot communicate much verbally, and while this is part of his challenge and cannot be controlled, he can still learn. He can function within a Montessori classroom very well, and they have welcomed him.
I chose the school beginning at Kindergarten ("Casa" in Montessori terms), where he began half-days, moved to three-quarter days and then transitioned to full days. For the rest of his time when he was not in school for the full-days, I employed therapists, including Occupational Therapists to come to our home. Today, he goes to school full-time and has the energy and the stamina to enjoy it. The respect and friendships he has made over the past three years have increased his confidence as he learns to type and communicates very well despite his lack of spoken words. He learns with the tactile Montessori materials, which help him learn abstract concepts on a more concrete level. The uncluttered classrooms and peaceful setting along with the environment of respect were the right choice for Adam, who was otherwise very distracted in his early days at school and often upset by loud children. In short, Adam needed to be with children, and we needed to accomplish his ability to tolerate them and enjoy others. I cannot say that Adam does not have learning needs that do not fall under the Montessori method. They do not have computers with which he learns well; however, I do send him along with a laptop, so he can answer questions, some of them set up so he can understand what the question means. For instance, if one phrases a question without demonstrating how it is to be answered, Adam may not know how to respond to the question.
My decision to place Adam in a fully inclusive setting has as much to do with my idea that Adam can learn and learn well with respect as it has to do with my philosophy that we are all meant to be together. In other words, we all learn and do things differently. For an autistic person with no severe physical challenge that requires constant medical attention, this has been a viable option in a system that is not yet willing to be fully inclusive because people do not understand what that means. I believe we expand our view of the world by sharing our perspectives and observations, and what better way to do this than to put all kinds of people together from the get go?
Sure there have been and will continue to be obstacles. Yet obstacles are meant to be surmounted by creative solutions, and while there are many books written on inclusive education and various ways of accommodating and teaching people, we first have to accomplish this one family at a time. By being tenacious, by helping teachers see and experience Adam in their own way, I am always surprised at how at-ease his teachers become with him. His assistant has certainly bridged this for us all. There is perhaps a naive part of me that believes with all my heart that there simply have to be individuals who are willing to work with other individuals to make the changes that are needed in our school systems. We do it at ground zero as well as by working to change the system.
I'm certain there will be a shortsighted teacher in the future as certain as I am that the sun will rise tomorrow. I'm sure this person will infuriate me with their unwillingness to view Adam as Adam but rather as some autistic kid who should be in an autism school for the purposes of remediating him before he can attend his/her classroom.
As for disabled programs, although I'm not a fan of segregation, I've never hesitated in putting Adam in programs where there are kids more challenged than he is. If the program is good, if it is open, if Adam learns, if Adam and everyone is accepted, then it is all good. It may sound so corny, but this kind of love is the best educational method of all.
Inclusion Isn't Enough
My son Sam had a wonderful experience in elementary school. For grades two through six, he attended a progressive elementary school where he was mainstreamed and included in absolutely everything. These years were among his happiest, not just because he was included, but because he was accepted and valued for who he is and for his many strengths, which include an almost photographic memory. Even some of Sam's obsessions were seen as strengths, so, for example, his weather knowledge became a strength that other students and teachers asked him to share. In fact, Sam taught a weather unit in his fifth grade science class, where he answered (correctly) every weather question posed to him by students and faculty alike. Sam still has a video of him teaching science class and is rightfully proud of his performance. Even some of his odd behaviors, like rocking his head and humming, were accepted by the other students, many of whom befriended Sam inside and outside of school. The key to Sam's success was that he felt valued, which allowed him to feel good about himself.
That all changed once Sam entered a junior high of 1,200 students, where he had to change rooms every 50 minutes, sometimes without the help of an aide. Sam found himself in a situation that was noisy, crowded, and chaotic. To make matters worse, one utterly clueless teacher (a "dinosaur" in the words of one of her co-workers) in the LD center where Sam was supposed to spend a small part of the day decided that his rocking was disruptive and tried to physically restrain Sam. When Sam pushed her away, he was sent packing to the principal's office and declared "unteachable." In short, Sam was reassigned to an MH classroom, even though MH was not his designation, and not mainstreamed.
During Sam's junior high and high school years we fought for Sam's right to be included in other classes and school activities, sometimes successfully but usually not. Even when he was included in an occasional out-class, he was never really accepted or valued for who he is. Given a rigid high school curriculum, he was either ignored or seen as a classroom liability by his teachers and the other students. Only one person, who became Sam's high school mentor, took the time to get to know Sam. He became Sam's one and only friend at school. Without this mentor, I am certain Sam would never have made it through high school. Even so, Sam would come home from school every day feeling bad about himself, feeling that he had failed yet again. No one was interested in him, no one valued him, so how could he value himself?
Sometimes Sam thinks about taking a class at my university or a nearby community college, but then he remembers his experience in high school and backs out. We know he's smart enough and articulate enough in his own perseverative way, but he assumes that he will be no more accepted or valued in college than he was in high school. Sadly, I fear he is right.
Love Isn't Enough
Our experience resonates somewhat with those of James Wilson's family: many years of incompetent educators, with only a few positive experiences mixed in.
Unlike Sam, however, my son has never been "mainstreamed." The closest he came was from ages four through seven when he was enrolled in an autism class within a public elementary school. But that ended badly: Cam was so disruptive that the other parents actually mounted a boycott of the class until he was moved.
The next experiment was a special program for children with behavioral "issues" (as they called them) within a school for developmentally disabled children. There were a few good periods — and he even made his first and only friend — but the staff spent most of their time doing behavioral triage for my son's aggression and rigidities. He learned more academic skills in our home-based ABA program.
That placement ended when Cameron was twelve. Faced with mounting aggression, side effects from his medication and his lack of progress, we made the agonizing decision to move him to a residential school. We made this decision because we loved him, and we knew that we had to sacrifice our desires for his needs. The school district didn't resist: in fact, they encouraged us. They realized, as did his teachers, that they weren't helping our son. They did make sure to inform us that he was one of the most difficult (they avoided the term "low-functioning," but we knew what they meant) children they had ever dealt with — even among other autistic kids. Many of the staff were fond of him; but that didn't compensate for their lack of competence.
We toured at least a dozen schools all over the East Coast and even strongly considered one in the Midwest. Most didn't have openings — at least, not for our son — and we couldn't cope with the thought of sending him hundreds of miles away. Ultimately, we decided on a school about 90 minutes away from our home. This placement has been more successful and has lasted seven years.
However, this school does not have a twelve-month program, which means that he is home for long weekends quite frequently. That's good. What's not so good are the long breaks: two weeks at the holidays, two more weeks in the spring, three weeks in June and the entire month of August. It's not that we don't want to see Cam, but when his routine changes, his lack of leisure skills, rigidities, destruction and aggression become big problems. And we all have to adjust to each other again. Partly in response to our pushing, the school now offers week long respite programs in April and August — helpful, but not enough.
We believed we had found a middle ground: a residential school, but one that still allowed frequent visits. In some ways, however, it has instead offered the worst of both worlds. Nevertheless, the school has a caring and experienced staff, and our son has done fairly well there academically (to the best of his abilities) and socially: though he has no friends his own age (aside from the young man who helps out when Cam is home), he has established close relationships with several adults. They love him and accept him for himself, but we still have to maintain constant vigilance, monitor them about our son's medical problems, help them address his behavioral difficulties, and prevent the staff from getting lazy.
In any case, this educational experience ends in July of 2010, when our son ages out.
As for mainstreaming: it may be valuable for some autistic students, but it's not for everyone. How would it help our son, who is non-verbal and doesn't read, very "stimmy" and loud, and intellectually quite disabled, to attend class with regular kids, pursuing a separate curriculum and subject to the confusion and chaos of a typical middle or high school? I don't agree, in short, that in every instance we are all meant to be together. I do agree with James Wilson that inclusion isn't enough. Alas, love alone isn't enough either. You also have to be tough and realistic.
The Superintendent Story
Our experience with Sean's schooling, from K through 12, has been mostly positive. Sean has been mainstreamed since kindergarten, and we have been fortunate to work with smart, kind, and caring teachers. Along the way, we have gotten positive responses when we ask for small things — such as requesting that Sean be walked outside when the school scheduled a fire drill, which used to hurt Sean's ears and frighten him. And we've been lucky with bullying; haven't encountered much.
Occasionally, though, we've run into the standard administrative resistance to the standard requests. In first grade, for example, Sean needed a full-time aide, which the school was reluctant to provide. One afternoon, we met with the school superintendent, who was a pleasant man, and who treated us courteously, but who told us a full-time aide for Sean was not a possibility. My wife and I are both articulate, both college-educated, and I personally can be a real pain in the ass. After the superintendent finished telling us that we could not get the aide, we very politely repeated exactly what we had just told him minutes earlier. He understood, he said, but the aide was not, as he had already explained, a possibility. So I repeated, almost word for word, what we had told him twice already. He looked puzzled, but as he just explained…. So I said everything again, using the exact same arguments and language as I'd used the first two times. At this, the superintendent began to look a bit desperate, as though he might never get out of the room and away from these people. This time his reply was a bit more conditional and included words like "perhaps" and phrases such as "near future." We thanked him profusely, and then repeated, again verbatim, our very same arguments. Lather, rinse, repeat. Eventually, he relented, and we got the full-time aide. Handshakes and smiles all around.
Driving home, I could not help thinking of all the people who might have lost that argument — the single moms who hadn't finished high school, the immigrants and refugees (of which there were many in the area) who did not speak English fluently, the people of a different race, class, or cognitive style. How many arguments have been made for children with autism or Asperger syndrome, and how many have been won on the basis of privilege, or lost on the basis of otherness?
Or never even had the opportunity to have the argument. Think of the steps you went through just to get to the superintendent. The system seems truly set up to intimidate and discourage. I just helped advise a foreign family who relocated to the US last year on how to get OT services for one child. A request first made in September backed up by specialists' recommendations from another country was completely disregarded. They were told evaluations were not possible because of language issues (which is frankly untrue; the system is required to find a professional who can give the evals in whatever language necessary). After a written appeal, formal evaluation finally took place this spring and services started in May. Since the family had originally planned to stay only a year, my firm belief is that the school system's strategy was to stall as long as possible in the hopes that they'd just go away.
Pam, I have no doubt — and perhaps I'm too cynical — that you are entirely correct in concluding that the system's hope was that the family would just "go away." Stonewalling is the administrator's first weapon of choice. From their perspective, serving a large population with limited resources, there is a certain logic to it. I once had a similar, though much longer and I'm afraid nastier battle with an insurance company over coverage for occupational therapy. I had to phone the company, which had purchased my policy from another company and then promptly nullified the relevant coverage, every single work day — every one, without fail — and then work my way through the welter of gatekeepers designed to keep me away from anyone with actual authority. It went on for months. It happened I knew someone whose father directed a rival insurance company. What should I do? I asked him. Keep making noise, the insurance executive told me. They are simply hoping you will give up. Hell of a way to do things.
This is so brilliant and so painful. My husband and I are also learning the lesson of relentlessness. And among my friends with kids on the spectrum, it's a universally acknowledged truth that we are at war. It's a horrible and sad truth. As you say, hell of a way to do things.
Educating Charlie in a school that best understands his learning style and his cognitive and communicative challenges — providing Charlie with this has pretty much been the story of Jim's and my life since Charlie was diagnosed in 1999, just around the time that he was turning two years old. He's done ABA for all those years, first in a home program, then in public school classrooms here in NJ in various towns. As everyone else here has written, we've had to constantly figure out what to do on a day-by-day basis. For all that programs exist and teachers and therapists get trained, it still feels like we have to reinvent the wheel at every stage.
Charlie has a lot of challenges, especially with his behaviors, and with the onset of puberty, these have been much more difficult for him and for us to "manage" (not a great way to put it; I loathe business-speak). He is a smart kid everyone agrees, though his learning is constantly hampered by the behaviors, communication challenges (Charlie prefers to talk, but his language is very limited; he has not been inclined to use any assistive communication devices — chalk it up to him living with two big talkers; he knows the power of words!). He's been in public school autism classrooms since he was 4 years old (except for December 2005-June 2006, when he was at a small private autism school) and so has been learning among kids his age — kids from our town — for years. Attempts to include Charlie in "specials" (music, library) with "typical" kids his age were brief and frustrating, though I think this was somewhat due to a total lack of proper planning and understanding of how to include Charlie successfully.
Jim and I do the bulk of the work "including" Charlie. "Behaviors" and all, we go everywhere we can. Last weekend that meant NYC's Chinatown (I attended the wake of a relative), the parking lot of the hospital, where Jim's mother has been for a few weeks (we really wanted Charlie to see her, but that really was not possible as she is very sick and it's upsetting enough for us), the beach at his beloved Jersey Shore. We still make our rounds at supermarkets and the occasional "big box" store (Charlie's just not much of a shopper and, really, I'd rather have every excuse to skip the mall). Sometimes I feel like telling the school district, just handle the education part as laid out in the IEP and leave the including to us — Charlie doesn't have to be "perfect" behavior-wise, and of course he's going to hum/stim etc. in public. He does those things to calm himself and, in the chaos of the world, it's good that he knows how to soothe himself, and whatever to anyone who wants to gawk.
As for college: Charlie is not going. We've been told that we shouldn't give up on this, but I don't see us as giving up, but rather letting go and allowing for new possibilities. Jim and I are both college professors, and Charlie's already toured numerous colleges in the Midwest, and on the East and West Coasts, like it or not. I've spent quite a bit of time trying to help students whose G.P.A. is dipping way below the C mark and have had to conclude, college is not the right choice for every student, certainly not for every young person in their 20s. (And here's an irony: Were Charlie college-bound, he could go tuition-free, provided he went to one of the various Jesuit schools around the country — — he could certainly go to the school where I teach if he were on the college "track"; we're always hurting for admissions; topic for another blog).
One note I'd like to sound is that we need to stop thinking that, as for any and everyone, education stops at 21 or some other set, "magic" age. Education is ongoing for all of us (I'm currently trying to learn Demotic Greek, with lessons to be provided by…one of my former students). My son's teacher (who is a fabulous teacher, mind you) has lately been talking in rather alarmist tones about "what's going to happen when he's 21," if Charlie doesn't have housing and a job and all this. Plenty of the 21-year-olds Jim and I teach have neither of those, and I think we need to remember that everyone learns and finds their way at their own pace, that education is life-long and that kids like Charlie — though their educational trajectory may not follow the usual milestones — are ready, willing, and eager to learn, and we need to figure out how to teach them, at whatever age, for their whole lives.
Home Schooling and Distance Learning
I am wondering if the growing acceptance of home schooling of typical children creates additional options for autistic ones? Mark Osteen discussed removal from school when things got unbearable, which I thought was very brave. I know that parents make this decision for a variety of reasons. I have an acquaintance who home schools her child, who is not autistic but has behavior issues, because the solutions proposed by the school system (which included enclosing the child's desk in a box to keep out external stimuli) were unacceptable to her. Home schooling networks these days include lots of peer interaction and classes shared with other home-schooled kids, plus distance learning options. It also allows parents to have more say in teacher selection and in the types of peer social interactions their children experience. Having watched a dear friend home school four children, the oldest now 16, and having seen how well adjusted, well rounded and well educated they are, I have to say I find it a compelling option. Of course this is a huge amount of work and responsibility for parents. My friend does not work outside the home, and overseeing her children's education is her responsibility. I can't imagine how this could possibly be an option for elementary or middle-school-aged children whose parents both work full-time. But if my kids came to me at 13 or 14 and had good reason to want to withdraw from school, remembering how isolated and unhappy I was at that age and how dissatisfied I was with my high school education, I'd be very tempted to work with them. My husband on the other hand, has different views….
I am personally fascinated by distance learning and the possibilities this opens up for autistic and disabled people generally, especially in terms of post-secondary education. I have been experimenting with hybrid classes for my master's degree OT students. Part of what has made me such a tardy poster here is that I've been reading and responding to hundreds of postings for my disability studies class these past two months (I'm blog exhausted). I find that a few students, who never speak out in regular class sessions, suddenly find their voices, posting gutsy and profound commentaries online.
Several colleagues in my school who have full-time faculty appointments, clinicians who have not until recently needed doctorates, have enrolled in online doctoral programs. What are the implications of online education for students that, for whatever reason, have a hard time in traditional programs?
I'm not sure we were brave: just desperate. Over the years we often felt that we knew more than my son's teachers — at least about him. They'd make the same mistakes again and again. But as you note, being their child's full-time educational supervisor is almost impossible for parents who have full-time jobs. In effect, though, that's what we did. We were just making it up as we went along.
Segregated Education in the 70s and 80s
This is an excerpt from a recent conference paper co-written with my sister and mother entitled "Bus Rides and Back Rooms: Disability, Family, Meaningful Occupation & Life Transition." I presented it at the Society for Applied Anthropology meetings last month. Hope was educated in the 70s, in the same era Deb Cumberland describes in "autism and acceptance," so this represents a very different experience than parents have had in the past decade or two. I think the range of experiences described in the postings is very interesting: everything from inclusion in public or private school, segregated autism/aspie school or classrooms, and a segregated residential institution. What a range of options. What Hope went through is different from anything else described so far.
Here begins the conference paper fragment:
From the early 1970s until the late 1980s, Hope, my sister and co-author, was bussed to a private, segregated, Easter Seals-funded special education facility. Even if traveling directly from our house to the school, the ride would have been somewhere close to an hour in length (or more during rush hour). However, my sister was picked up first and dropped off last, so spent more than 4 hours a day on that bus. As Hope says, "It was a lot of wasted time." Hope had no way of telling us about it. We found out because the school hosted "sibling days" every summer. My younger sister and I joined Hope on the bus and complained about the length of travel time. The bus driver told my parents that since Hope was the quietest, she tended to pick her up first and drop her off last. I believe that our parents' inquiry resulted in Hope having a slightly faster trip, but it was still quite a strain on her. To this day she has very low tolerance for traveling when there is any kind of congested traffic. Hope has dark memories of this time: "Other kids on the bus sometimes attacked, and I was abused by them." When asked how the driver responded to this, she replied: "They tried to help but it didn't work. Wish I could have gone to a regular school."
In contrast, my own time bussing to an "ordinary" school near our home totaled 20-30 minutes a day. Our mother and co-author, Barbara Kilcup, worked as a special ed. teacher in the public schools from 1975-1998, then taught kindergarten from 1998-2003. In the time between sending her own disabled child to a distant segregated school in 1970 and hosting disabled children in her typical kindergarten class more than 30 years later, Barbara witnessed a profound change in the educational opportunities available to disabled children. Although Barbara's special education classes were officially self-contained, she always advocated for what was then called "mainstreaming" and slowly changed her position to that of a support and resource for students who were increasingly placed in regular classrooms. Eventually she became a kindergarten teacher in a school that practiced total inclusion, which allowed her to advocate for disabled students from the other side of the fence.
In 1970, Barbara was lucky to have a place — segregated or not — willing to educate Hope for free. Publicly funded education of disabled children was not mandated until 1974. Hope was referred to Meeting Street School at age 3 for early intervention. Hope never developed the ability to speak because of her motor planning issues (apraxia). She never could articulate more than a few sounds.
Meeting Street School was the best that was available at the time. Barbara says the programs that they offered, particularly for parents, prepared them to be advocates for their children. Sibling days were a great deal of fun. For part of the day we got to meet other siblings to share stories and peer support. We participated in disability awareness exercises — the classics that disability rights activists groan about today — trying out a wheelchair, walking with a blindfold and picking things up with socks on our hands. For part of the day we followed Hope to some of her classes and therapies. We played with the big balls and climbed a little stairway in the therapy room. One year Hope's class performed Romeo and Juliet for us. Hope was Juliet's nurse. One of the days was always devoted to some fun community-based activity outside the school- — usually an amusement park. Hope types: "It was great having them come. We did fun things and I got to be with typical kids." I remember leaving with a positive impression of Hope's school. Her teachers and therapists seemed young, super nice and appeared to genuinely care about her. To this day people sometimes walk up to us and re-introduce themselves as a former teacher or therapist. There even seemed to be a sort of early version of disability pride and self-advocacy. Certainly it was a place where you could be comfortable having physical differences, though maybe I'm over romanticizing. Hope says: "I liked Meeting Street School and teachers, but they treated me like a baby when I was older. I was mostly given stupid things to do like putting pegs in boards and having a yucky week. The other kids were too different and didn't interact with me much."
Hope never had a formal reading program. Because of her motor planning issues, sign language, aside from a small vocabulary of personal signs, was no solution. Various communication boards were somewhat helpful. We also tried a few augmentative devices, which she eventually stopped using, either because they were complicated or were easily broken. Despite the lack of focus on literacy, Hope was always fascinated with alphabet books, credits at the end of movies and our Speak-n-Spell electronic game. I remember that computer voice saying "That is correct" and wondering what word she got right. At the time I did not believe her capable of literacy and wondered how she could get a word right without it being written out for her to see and copy. In any case, Hope's school recognized her as being pretty smart, but for whatever reason, they did not succeed in helping her find a communication style that would allow her to share complex thoughts. I think they blamed us for not consistently applying their communication strategies, which we (or at least us kids) never understood very well. I think Barbara was as frustrated as the school therapists, but the rest of us merely used Hope's lack of complex communication to confirm our own preconceptions about her capacity to think and communicate. When asked if Meeting Street prepared her for life as an adult, Hope replied: "Not really. It wasn't good preparation for life. I learned more out in the community."
The Inclusion Dance
It's official: I'm a bitch. By which I mean I've moved past that initial flush of optimism and teamwork and wanting everyone to feel good about themselves to disappointment, confrontation, detente, anger and now — inevitably — relentlessness.
And it is relentless — for reasons bureaucratic, cultural, personal, possibly gender-determined and sometimes inexplicable.
The day starts with a clamor of children in the big yard. It's an expansive space — too much for the Kindergartners, much less any child with sensory issues — and children whiz around, hollering, bumping into each other, a chaotic, moving mass of kidness.
Isaac refuses to set foot in the yard. This full frontal assault first thing in the morning is unbearable. He makes a beeline for the library, and insists we sit and read a book. He falls apart when I tell him it's time to go to the classroom. "Nooooo," he wails, sinking boneless to the floor. "Come on, Isaac," says one of the administrators as she briskly picks her way around him. "You'll be late."
We are on another planet, I think. One where there is no word for "late."
In my most philosophical moments, I realize that it's not their fault. This is a foreign language, and they are struggling to learn even the most basic syntax. If he melts down right after lunch (a hasty affair in the multipurpose room, where the echoes are too much even for me), they ascribe it to stubbornness or poor impulse control. They don't ask about what happened right before. That's not the point for them; his behavior is the point.
And so, like a detective, I try to sift through the scraps of information I glean from time to time to find the answer: What was he doing when he got upset? What was the class doing? Where was he? They think I'm making excuses, but I'm looking for a pattern. Was it noise? Did something upset him?
It's exhausting, for them and for me, but mostly for him. "He's so smart," they'll say. "He knows he'll get a reaction. What do you do to discipline him at home?" "Well," I respond, gathering what is left of my wits, "It depends on the situation. If he's dysregulated, I help him collect himself and vocalize how he feels. If he's just being five, we set limits, give choices, the usual. It's annoying, but developmentally it's actually really great." And I chuckle weakly. But no one is interested in an impromptu lesson on theory of mind.
What they don't realize is that Isaac is starting to become aware of his differences. His father and I know this because we see how hard he works to keep it together throughout the day. By the afternoon he's clinging to regulation like a shipwreck survivor to a fragment of driftwood. They're not seeing that his nerves are fraying. And when he lets go and hurls a book at the wall in frustration, it's back to the question of discipline.
What they should do instead: tell him how proud they are that he kept it together this long, soothe him, help him understand what he needs and a better way to ask for it. I worry, more than ever, that his self-esteem is at stake, that he's learning the worst lesson of all: to internalize his feelings.
And yet there are amazing moments, too: hearing that the other children in the class ask him to help with their spelling, or that he loves his social speech group; seeing him stand up with his class at the Thanksgiving pageant.
Inevitably, my crusade to explicate my son is impossible without a fundamental understanding of how his wiring works, and that is in short supply. It's not just that the autism experts in our district are too understaffed and overstressed, it's that they are starting from square one; they have to make up for years of inertia. It's true, he's a complicated kid, and I don't expect anyone to care as much as his father and I do, but…he, and the other kids like him, deserve better.
This was my saddest lesson of the year: being nice doesn't help. I hoped it would. I was empathetic, I sent links to articles, I offered to bring in experts. But, as one of our therapists said to us, they just don't know what to do with the bumpy kids. So I became that mom: the one whose calls the administrators dread.
When Isaac was just about to graduate from his amazing inclusion preschool, a panel of parents of some older children came to share their experiences. There was one woman who told a story of how she had put her son, a "high-functioning" boy, into inclusion because she couldn't bear the thought of sending him to a school for kids with special needs. But after a year of struggle, she decided that this decision was more about her self-image than it was about what he needed. It was a disservice to him, she felt, and they changed schools.
That story depressed the hell out of me at the time, but it also felt oddly liberating. What if we were in a place where the natural response to a meltdown was joint compression and heavy work rather than yet another pullout? Or where multiple modes of communicating — verbally, visually — were routine? What if we were with our people?
But there is no workable option here, and at the end of the day, he's back in the rest of the world, which is not filled with wiggle chairs and chewies and people who appreciate his quirks. And we have to teach him to live in the world we live in, not the world we wish we lived in. It breaks my heart.
So we include, even though the inclusion experience feels like a kind of noblesse oblige. We wake up, we get dressed, we go to school and we crash the neurotypical party every single day. And it hurts, but we do it anyway, in the hope that, if only by our sheer relentlessness, our sheer bovine refusal to disappear, we'll clear a space for him, and, more importantly, help him clear a space for himself.
I'm calling this post and prompt "The First Interlude." It's an attempt after two rounds of questions to recover threads and have you develop further some of the issues that have emerged. Like a number of participants, I, too, am struck by the incredible variety of experience and perspective. I take this variety and these differences to be positive and not just because inevitable, though I wouldn't have always seen it this way. I am a die-hard inclusion advocate, having included my seventeen-year-old son, DJ, from the moment my wife and I adopted him at the age of six. When he came to live with us, he was in diapers, and he carried the label of profound mental retardation. Ten years later, he is a straight "A," honor-roll student at our local high school. He doesn't speak, he has profound anxiety, he flaps and stims, and yet he has been academically very successful. He uses a computer to speak and can point independently at a vertical letter board to spell out words or at a piece of paper to identify the answer to a question. His test scores are off the charts. Socially, he has also been successful, though not as successful as he would like. His classmates and teachers all take pride in his presence. He recently wrote a play called "Plotting Hope," which his neurotypical classmates performed and which made it all the way to the finals in the state theatre competition. To a person, the actors said that they really began to understand my son's way of being in the world. One even commented, "I now think autistic people are better than we are — smarter, more perceptive, certainly more courageous." I kid you not. My wife and I have thrown ourselves into this grand experiment — in many respects, we have done nothing else but this for the last ten years.
And yet our experience is not your experience. Autism is radically heterogeneous. Inclusion depends on so many idiosyncratic factors that to generalize is to be unfaithful to the particulars of this autism or that, not to mention this family or that, this school district or that, etc., etc. Kristina has had success not including her son. James had success until junior high. Mark chose a residential school for his son. I hear Mark telling us that acceptance means being realistic about your child's impairment, loving him or her for who they are, not what you want them to be. He worries, if I understand him correctly, that a pure difference model might issue ironically from a progressive parent's insecurity about impairment — a provocative point, to say the least. At the same time I hear Pam reminding us with the example of her sister that we might be mistaken in our judgments of intellectual or social capacity — this was certainly true of my son and I'm sure it's true of others, who, were they provided with a kind of communicative accommodation, would suddenly seem much less disabled. Pam writes, "As all of who work in the field of Disability Studies know, without accommodation impairment becomes disability." James makes a similar point when he remarks that his son "wants to be accommodated so that he can be accepted." This sort of difference, in other words, needs accommodation if it is to feel OK about itself. And John shows us just how difficult it is to get the accommodation your child needs with his anecdote about the perseverative request: my son needs an aide, my son needs an aide. Like Pam, Estée believes that with enough creative problem solving, a fully inclusive life is not only possible but also necessary.
And yet, I hear Mark's point about his son's very challenging behavior and inability to read. And I think of Valerie's school. And I hear Kristina say matter-of-factly that her son's not going to college. I have to admit that I cringed when I read this, but maybe Mark's right about at least a portion of my activist sensibility. It might be too focused on a certain idea of inclusion or happiness that isn't appropriate for everyone. And yet, the experiences of my son and others tell me, in the words of Doug Biklen, to "presume competence" or, in the words of Anne Donnellan, to "practice the least dangerous assumption." Otherwise we might be circumscribing possibilities in advance. So, here's my question: Assuming autism's radical heterogeneity and the innumerable factors that shape a given life, how do we keep autism in all of its manifestations from becoming a disability or at least less of a disability? How do we realistically attend to the specific impairment (Sam's autism, Hope's autism, Charlie's autism, Cam's autism, etc.) without allowing our realism to dovetail with the inclinations of a prejudicial society? In his post, James makes clear that his son is more than capable of doing college-level work, but he doesn't attend college because he fears that he won't be valued or accepted. Surely, we don't want to be too realistic about the barriers to autistic self-fulfillment. Without some of Estée's and Susan's fearlessness, without their willingness to rethink what is possible, the world will remain exactly as it is. And yet, and yet…. Whatever our different opinions and perspectives, how can we act as progressive agents for autism acceptance — for better lives, better care, more respect?
Autism and Isolation
These articles really hit me hard with the painful life experiences depicted. What do you all think of them?
a. "Autism on Campus: The Other Diversity" By Daniel Passantino, February 25, 2007 http://www.wiretapmag.org/education/43008/
b. "The Monster Inside My Son" http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/index.html
They remind me of a conference presentation I saw last year, a graduate student presenting her research with adults with Asperger syndrome depicting how they are treated in society. The behaviors they described of the "typical" people they encountered are far worse than any but the most extreme autistic outbursts.
Agents for Autism Acceptance
How do we act as progressive agents for autism acceptance? Great question. My experience with Sam, especially when he was in school and sometimes "mainstreamed," sometimes not, comes very close to Susan's as she describes it in her recent blog. I was never sure when to push, when to pull back, when Sam needed an aide or a particular service, for example. I muddled through those years, sometimes aggressive when I should have been passive, passive when I should have been aggressive. We can't fight and expect to win every battle, I know. We have to be realistic. I agree with all that, and yet sometimes I think that when we pull back, when we don't continue the fight for acceptance and accommodation, we're simply reinforcing the mainstream stereotypical view of autism: that people with autism are retarded, lack communication skills, and should be warehoused. So I don't know. Like everyone else, I muddle through, hoping I make the right decisions.
Now that Sam is out of school and has been for several years, my struggle has changed. Instead of school systems, I now have to contend with the county MRDD and state Medicaid to get services for Sam. Unfortunately, my state (Ohio) has been hit hard by the economic downturn, so that all services and resources have been cut. Sam has a Level One Medicaid waiver, which we were told would pay for 15-20 hours per week for providers. We had hope that, with this assistance, Sam could live more independently in the self-contained basement apartment we built for him in our house. When the waiver officially started, we discovered that it would pay for only 5-6 hours per week, which was less than Sam was getting before from the county MRDD and obviously not nearly enough to pay for providers. I expressed my displeasure, made my case as forcefully as possible, but in the end I had to pull back, being realistic, I suppose.
Still, I wonder what I should do next. Now that he's out of school with virtually nothing to do (he can't work and won't go to a workshop, as I describe in my memoir), Sam struggles daily with depression. He looks forward to his companions or "buddies" coming over for recreation, movies or restaurants for the most part, but even these outings are limited by funding. We end up paying for most of them ourselves. Sam increasingly dislikes going out with his parents, so that further limits his opportunities. And as I said before, he's afraid to take classes at our universities or nearby state colleges because he's fearful of being made fun of and not accepted. In this sense, his case is similar to that of Daniel Passantino in one of the articles Pam referred us to (which by the way I cite and discuss in my Weather Reports from the Autism Front memoir). The result is that Sam is depressed much of the time.
So I find myself in a bind of sorts. I want Sam to get out, to have opportunities, and to be included in community activities, and yet I know that he's frightened of new opportunities because he feels he won't be accepted. He knows he's different, and he knows that difference (especially neurodiversity) is generally not accepted. In other words, he's internalized the social stigma attached to autism. All of which means, at least to me, that we all have a lot of work to do in challenging (correcting?) the autism stigma. More on this later…
Autism, Competence, and Acceptance
I will start answering Ralph's thoughtful set of questions with another provocative response: there is no such thing as autism. Before you all slap your computer screens and make ready to flame, I will explain. As our moderator points out, autism is "radically heterogeneous," which should encourage us to attend to the specific facts of individuals' impairments, strengths and weaknesses. One way to do that is to become wary of using the term "autism," for the word tends to smooth out individual differences — which, judging from the wide range of responses and experiences on this roundtable, are substantial — in favor of an increasingly blurry diagnostic category. We tend to use "autism" as a shibboleth, reifying it as if we all know what it means, when what we really have are different people with widely diverse abilities. Each person embodies the term yet also reveals its inadequacy. So I'll say it again, knowing that it may raise hackles: there is no "autism"; there are only individuals and their autisms.
The larger question — how to balance realism with optimism, at once accepting our loved ones' challenges with clear eyes but refraining from turning expectations into self-fulfilling prophecies — is one we've wrestled with since Cam was first diagnosed at age 2 ½. As I've indicated, we were able to move forward and accommodate our son only after we realized that our high expectations for him were unfair, even damaging. Presuming competence was often exactly what hindered us all the most. The "least dangerous assumptions," in our case, had more to do with emotions: to remember that he does understand what we say and watch what we do and feel what we feel, and that he has many of the same anxieties and desires of other people his age and to treat those desires with respect. Yet he also behaves in many ways like an ordinary late teenager — slams his bedroom door, or pointedly demands that we "leave" (his word).
He also continues to open our eyes. On this past Easter Sunday, for example, Cam became upset when he thought he saw his aide's silver car parked in front of our house — yet his aide wasn't here. Growing increasingly agitated despite our explanations, he finally announced, "Someone should be coming!" This is one of the longest sentences he has ever spoken. Despite his unusual loquacity, the incident reminded us that objects are more resonant for him than words. Cars signify deeply: he uses them to determine where important people might be, as outlets for anxiety, and as small bubbles where rock and roll reigns! He communicates via vehicles; they help him compensate for his impaired ability to communicate in ordinary ways. His ability to figure out a way to make sense of the world strikes me as remarkable: if you want courage, there it is.
Such episodes remind us that we have to remain alert for any sign of interest and ability, as we always have, so that we can help him achieve as much as he is able to achieve. But they also remind us that his mind is different from ours, and that these differences are not always ones we can understand and accommodate. The fact is that not every impairment can be fully accommodated; recognizing that is just as essential as presuming competence. In other words, if, as James Wilson points out, it's necessary to be accommodated in order for our loved ones to be accepted, it's equally necessary for them to be accepted as who they are in order to be accommodated.
We used to spend a lot of time worrying that we might have missed something, that our son is much more intelligent or insightful than we'd thought, that some hidden talent is buried within, but at this point, such worries are mostly just our guilt talking. Nowadays, like James, we think much more about helping our son have a meaningful adult life. That means pushing school and state personnel to improve their programs, insisting that he have every technological device he needs, and monitoring his teachers and aides. And although we are also involved in advocacy and serve on the boards for disability organizations, these practical measures are our most important methods of being agents for the acceptance of autism(s).
Structure of Agency
Ralph's question — how can we act as progressive agents for autism acceptance — for better lives, better care, more respect? — is a critical one. To answer it, I think, we have to begin with what Ralph calls the "radical heterogeneity" of autism. (If we choose to use the word "autism" at all. I believe I understand what Mark means when he advises us to be wary of the term.)
Progressive agency is indeed our charge, our mission. To succeed, I believe we need to do what all outsiders have had to do when confronted with injustice and inequity. We need to organize. Too many of us are still fighting on our own. We are sitting in IEP meetings, or meeting with teachers in hallways, or writing letters to principals — on our own. We are resisting, imploring, coaxing, explaining, and imploding. Everything is at stake, as we know, and there's no time to lose. So we fight — but too often we fight alone, without the force of others who are fighting the very same battles. We shouldn't have to do that any longer.
Our fight is complicated by the radical heterogeneity of autism — the diversity that makes Mark mistrustful of the word. The autistic kid is the one writing plays that educate his classmates. (What a beautiful story, btw.) And the autistic kid is the one who does not speak and eats dirt. Autism is expressed in the eloquence of the college student's essay that Pam recommended to us and in the stimming of the little girl whose teachers really don't want her in the classroom. Each of these calls for different strategies, different enactments of agency.
We are winning some battles, if only because "we" has become a larger and larger group — one that includes politicians, and writers, and teachers, and school superintendents. Many people have been touched by autism, and "they" become "we." For example, I think we are largely winning the battle over inclusion. ("Largely" meaning that there are still exceptions.) But we have many other struggles ahead. For instance, I don't think we have even begun the next great battle — the battle over adult services.
But to get anywhere, I think we have to organize — the way people have in the civil rights movement, in the labor movement, in the farm workers' movement, in the Gay Rights movement. Ideally, we would have strategies, research, legal advice, etc. at our fingertips for each of the heterogeneous situations we encounter. How to respond when our child needs an aid in third grade; needs extra help in a first-year writing class; needs a job and place to live as an adult. We would have structures of agency; an organized tool kit into which we could reach for each problem we encounter.
I have not followed the advice I offer above. For most of our lives, my wife and I have operated independently, to greater and lesser success. It was not the best strategy, in retrospect. For one thing, I'm not very clued in to autism organizations and autism politics. Are existing agencies providing the help we need? What's out there now? What about ASA?
Acceptance and Advocacy
I just got back from Phoenix, where I attended the dedication of a room at a brand-new vocational center for adults with autism. It's part of the Southwest Autism Research and Resource Center (SARRC), and it gave me a peek into what's possible when people think broadly and imaginatively about what it takes to serve our radically heterogeneous community.
The center, called the Opus West Vocational and Life Skills Academy, provides training in daily living skills, vocational skills, as well as job readiness and placement services for adults with autism. Everything was conceived to support the students while maximizing their learning opportunities: a technology center, a rec room, "The Loft," an apartment-like series of rooms for socializing and life skills education, a kitchen and a garden where the students can grow vegetables which they will eventually harvest, make into soup and sell locally. It's a dream — quite literally — come true.
Closest to my heart, and the reason I was there, is a classroom called "Camilla's Crew," in which the staff offers vocational training to people with autism. The teachers assess the clientele — their strengths, preferences, challenges — and then work with them to develop the types of skills that will help them land and keep a job. There's even a "touchdown" area with tiny cubicles meant to help the students practice telephone conversations. It's an ultimate example of the "structures of agency" that John Duffy calls for.
Camilla is my cousin, and she'll be 14 this year. She's lucky to have this resource, which was developed on a foundation of so many collective years of experience, love, learning and success.
I used to think that acceptance meant letting go of hope. Will Isaac go to college? Live independently? Hold down a job? Have a fulfilling relationship? Those days are as distant as the stars in his beloved planetarium and as omnipresent, too. What exactly am I supposed to accept? Maybe, as my cousin Julia (Camilla's mom) wisely said to me the other night, I don't have to do any of that yet. I can ride it out until the fork in the road presents itself.
It will, inevitably. Kristina works daily to include Charlie, even as she lets go of certain possibilities to allow room for others to grow. Mark focuses on a meaningful adult life for Cam. James tries to balance his desire to help Sam experience as much of the world as possible, even as he sees that Sam's fear of rejection narrows those possibilities.
These are all very different notions of acceptance, I think, and all struggle against the same paradox: the fear of circumscribing or diminishing a possible future in the interest of realism and happiness. And this gets at the central problem of parenthood: when exactly do we abandon the idea that Father (or Mother) knows best?
Even though my son is still so young, I feel that tension keenly. So, to me, acting as a progressive agent for autism acceptance means letting go not of hope but of my own certainties about accomplishment versus meaning, success versus happiness, growth versus comfort. And, perhaps even harder, doing it in a bell jar, knowing that the tone we set will influence the way people see my son, and us, and maybe even autism. I think every progressive movement must work this way.
It reminds me of the burden that minority groups feel to be faultless in the face of prejudice, not to feed the stereotypes that separate them from the majority. That was in the back of my mind as I read the news coverage in Vanity Fair about Bernard Madoff. Despite myself, I couldn't help thinking: Ugh — why'd he have to be Jewish? And I've certainly heard that same sentiment from friends in other groups. But to react that way buys into the very fallacy that we're trying to correct. We are, after all, radically heterogeneous too.
I think this is why Jenny McCarthy enrages me so. Here she has a national platform and she's used it to reinforce the most shameful stereotypes: that people with autism are "locked inside a world of their own," that they are toxic, that they can be "recovered" by unproven and potentially dangerous medical treatments, and that anything less than this approach is wrong. It's just the most incredible and destructive hubris. There are a lot of scared, vulnerable parents out there who need to see a positive way forward, and McCarthy sets us back at least 50 years. What did Yeats say? "The best lack all conviction, while the worst are full of passionate intensity." Check.
I don't want to get into an argument about causation; I just believe that we as a culture need to grow beyond one dominant autism narrative. While we don't need perfect, 50s-vintage scenes of domestic spectrum family bliss, we do need real stories of real families duking it out on a daily basis: my friend Shannon taking her son hiking or to Cosco or to a fair. (Her motto: "We're here. We're quirky. Get used to it.") That's why I started my blog, why I admire Kristina so, why I loved Ralph's book and summoned the nerve to write to him one day to introduce myself.
But we shouldn't forget that our job is different in one critical respect from other groups who have historically advocated for their community's rights: as parents, we are advocates by proxy. So we walk a fine line here as members of a community but not as the direct beneficiaries of the majority's acceptance. It is an issue that has deeply concerned activists like Ari Ne'eman of the Autistic Self Advocacy Network, and rightly so. Speaking on behalf of those with autism can unintentionally disempower those whom we seek to empower. So we have to be careful.
Ultimately, I believe that we need to advocate for our children until they tell us — in whatever way, with whatever language they have — to stop. And at that point we will know that we have done our jobs as activists and as parents.
(A very short and insufficient post.)
"Whatever our different opinions and perspectives, how can we act as progressive agents for autism acceptance — for better lives, better care, more respect?"
Currently my school district is requesting that Charlie be placed in a "temporary residential placement" at Bancroft Neurohealth's Lindens unit. My answer to Ralph's question will be made manifest at the IEP meeting that they district has set up on Wednesday morning at 9 a.m..
Role of Advocacy in Our Family: A Case Study
"Whatever our different opinions and perspectives, how can we act as progressive agents for autism acceptance — for better lives, better care, more respect?"
In recent years I don't do so much other than when we present together at conferences. I don't even stay in very good touch. I am supposed to buy a webcam so we can skype and I keep forgetting. For brief periods when I was in grad school (the mid-late 1990s) I actually worked for a few months as a community vocational assistant for Hope and helped set up jobs and recreational activities in the community. She got up to green belt in karate and did dance and yoga with me — she bartered free classes for cleaning up the studios and got some money, too.
Then I went away to Brazil for a year for my dissertation research and her fantastic community/vocational program director lost his state funding and committed suicide. That was so devastating for Hope and our family. He was such a wonderful man, a visionary. He helped change Hope's life and a small group of other lucky souls but had absolutely no practical business skills. When I got back from Brazil, I worked for a year or so as an advisor for her self advocacy group (mostly folks she knew from her former sheltered workshop), but those folks were not nice to her — they had the sheltered-workshop mentality that if you can't talk, you are low in the hierarchy.
This is when I was writing my dissertation and we were both still living at home, though I got her on the waiting list for section-8 housing and we both moved out about the same time. She and a former staff person who had worked with the deceased visionary moved to one agency for vocational services. Hope is still with them; they've been fabulous. They are the kind of agency that is empowering both for those they support and their employees. We took what we could get for residential support. We had heard bad things about the agency that agreed to support Hope for housing, but figured we could always change if necessary. We had a housing deadline to meet; if we didn't have an agency and a place to live, Hope would have lost her section-8 voucher.
That agency did not turn out so well; they were the ones who put Hope on a behavior program with an approved restraint without consulting us or telling us. We found out by accident years later. According to the agency administration, it would violate her rights if they had told us they were violating her rights. Hope is away from them now, working with a wonderful residential agency and living in a condo by the sea with a single roommate. She and mom recently made a formal presentation to her former self- advocacy group, so maybe they are seeing her with new eyes now. I think she has a pretty good life.
What still boggles me is that, even though we are all seasoned advocates, we missed — for years!!! — seeing how much trouble Hope was in at her former residential agency. The agency directors attended all the same advocacy and self-advocacy conferences that we did. How could they have made the choices they did? And how could we have missed it? Mom lives just a few miles from where Hope lived, saw her often, and it still took us years, and the lucky chance of a blabbermouth residential staff member who accidently disclosed more than they should have to staff from the vocational agency (who immediately told us), and subsequent brave residential staff members who confided in us and were fired, to learn what was going on.
We seemed so clueless, the opposite of vigilant, in retrospect. Of course there were signs. Hope had always been impatient in cars during traffic, making noise and jumping around, but had never kicked in a dashboard before. We thought it was just a reaction to one particular staff person, later cited for abuse of Hope's roommate and fired. Hope had never engaged in destruction of property before. The insidious thing is that the agency used this to up the level of financial support they received from the state for her (they could get more money for someone classified as a "behavior" problem), and also got money to purchase a van out of the deal. That is the last incident we heard about, until it all came out into the open years later.
Mom had health issues during this time, hip and knee replacements, so maybe that is part of the picture. Our other sister in California, my father in Florida, me going through a soap opera of a first marriage, then a second marriage, and young children. We missed what was happening. Bless the vocational agency; they caught it. I had a newborn, my second child, at the time it all came out, and couldn't be there in person to help sort it all out.
A residential staff person who was off-duty ran into Hope and a vocational person in a store. The clueless residential staff person complained that Hope was showing "Level II" behaviors. She said that the vocational people (who like us knew nothing of the behavior program) were not following the protocol. The vocational staff person knew the lingo, knew what it meant, and immediately told their supervisor (who, not so coincidentally, was the woman who used to work for the deceased visionary and who went with Hope to the new vocational agency). The supervisor told us, and that is when we began to be able to extricate Hope from the trap she was in.
We had to handle it very carefully. The vocational supervisor called the residential supervisor and "played along," saying they would like to see a copy of the behavior program so that there could be "consistency." She then passed it to us, with Hope's permission of course, and we demanded a meeting with the residential agency directors. Eventually, we received the residential staff person's anonymous disclosure that Hope was being psychologically abused by her roommate, that staff members used Hope's money to placate the roommate, and that their policy was to not take Hope outside the home except for medical appointments.
Hope came back to live with Mom for about a year or more, until a new agency and roommate and living situation came together. She lost her section-8 voucher, but perhaps you will take the same satisfaction that I do in the fact that the agency did too, and it put them in some financial distress. They asked us if we could transfer the voucher from Hope to one of her roommates, but of course it was impossible, illegal, and we wouldn't have done it if we could. They got to keep the van though.
Why didn't Hope tell us what was going on? Hope wasn't typing at the time. Her machine broke and the residential agency, not believing it necessary and not believing she could really communicate, never got a new one. Also, some of the residential staff "typed" with her in ways that it was obvious Hope wasn't really the one typing so she didn't trust them and refused to type with them on the computer. Hope actually was complicit in hiding the situation from us. She was ashamed to be on a behavior program and didn't want us to know.
Moral of the story: I totally agree that parents/family should not be intrusive and overbearing and that we should back off when asked to do so. At the same time, the need for vigilance to ensure physical and psychological safety never ends.
In light of the essay that Pam shared with us from Salon called "The Monster Inside My Son," which speaks candidly — and, to my mind, sensationalistically — about autistic aggression, I'd like each of you to comment on how best to represent the difficulties that the parents and siblings of children with autism face. If a parent or sibling adopts a strictly "posautive" attitude about autism and indeed seeks to challenge publicly the culture's prevailing negativity, there's a danger of suppressing genuine hardships and not asking for help. We have all seen the outrageously negative comments of some of the parents in Autism Every Day; the effect of such comments on their children isn't hard to ascertain. The author of the "Monster" piece seems to come dangerously close to doing the same, for she imagines a kind of merciless binary: either demean her son and save herself OR ignore his aggression and end up maimed or killed. Whether you refer to the issue of aggression or not, please discuss how, as parents and siblings, we can talk about autism's challenges in a progressive way, without writing off either ourselves or our loved ones. Please also comment on whatever help you've received or not received (counseling, respite care, job coaching, medical attention, etc.). If you're comfortable doing so, comment as well on the impact that autism has had on your own well-being. I tell people that adopting and caring for my son has been simultaneously the most demanding and rewarding thing I've ever done. It has involved enormous sacrifices but also unexpected richness and growth (not to mention, fatigue!).
One of my students commented perceptively about this essay. He agrees with Ralph that the piece is sensational; he even went further to say she was manipulating us for emotional response. He also noted that alcohol consumption was clearly a coping mechanism for this person. Finally, as someone whose sister died from leukemia, he couldn't help but have an emotional reaction to her comparison of autism to leukemia. At the same time, as an entry-level future occupational therapist who specializes in autism, he has seen autistic youth during his field work experiences who think and enact violence. He says that he has found in some cases a disturbingly detailed knowledge of firearms and their use and other violent fantasies of this nature.
Another student talked about how depressed and isolated her autistic adolescent brother is. He keeps organizing events on Facebook and inviting his "friends," but no one ever shows up. She wrote movingly about her mother's stress in trying to figure out how best to help.
I was wondering if experiences regarding violence are different along gender lines? My sister has never been more violent than described in my last post. She's destroyed property and she's pushed family members occasionally, when greatly provoked. When very small, she used to do some self-hurting behaviors like hitting herself, but not to the extent of injury, and she grew out of it. Except when her anxieties are provoked in traffic or waiting in line or for someone to arrive etc., she is a pretty mellow person. Since her experience being held captive in her home, except for work and doctor's visits, she can get very anxious when people leave to go out anywhere without her. This is all so mild compared to the challenges described in the article.
As a sibling rather than a parent, I am buffered. I'm not on the front lines (at least not yet). I don't experience the same level of stress that my mom does. Mom knows that if something needs to be done, she's the one to do it. None of the rest of us are on hand. When Hope needed to leave her previous residence, she moved in with mom. At the time there was no guarantee how long it would be until another living situation came along, if ever.
My younger California-based sister and I know this is going to be our responsibility some day. And both of us realize, just like the research on siblings says, we need to live nearby, which probably means Hope is the one that would have to move (a recent research study showed that siblings who were primary family contacts generally lived within 50 miles of their disabled sibs). What we just went through with the residential agency — how much longer would it have gone on if Mom hadn't been right there and had such a good relationship with the vocational staff? If we were all monitoring from out of state, might Hope still be living in that intolerable situation, no one the wiser? Or do we trust that life is good for Hope with her community relationships and that we can keep things kosher from a distance? The stakes are high.
Coping with Violence
I agree that coping with violence (self-injury and aggression) is probably the most difficult aspect of being a parent or companion of a person with autism. Over the years I've tried to disengage and adopt a kind of Zen-like attitude when Sam becomes abusive to himself or others. Sometimes I'm successful, sometimes not.
I've written about these issues before in my Weather Reports memoir. I've just added Chapter Eight, "Self-Injury," to my blog in case anyone wants to read it. I started the blog, http://wilsonjc.wordpress.com, when a group of parents who couldn't afford to buy the book asked me to make the material available free online. So far I've posted three chapters.
I won't repeat myself here, only to say that many of the autistic bloggers associated with the autism hub (Amanda Baggs, Michelle Dawson, and others) consider head-banging and other acts of violence as a language, a way of communicating that should be regarded as a manifestation of diversity. I've wrestled with this argument for years. I suppose they are right, from their point of view, but that doesn't make it any easier for others to cope with the violence. For years I talked to Sam about finding an alternative way to communicate his needs. For example, he'll be sitting in the kitchen impatient for breakfast, and instead of saying so he'll smash a hole in the wall with his fist. Or when we're driving to our neighborhood trail for his morning walk, he'll sometimes change his mind about walking and, instead of saying so, will hit me. Each time an incident like this occurs, we'll talk about it later, when he has calmed down. I reinforce that all he needs to do is say what he wants, to use his language skills instead of becoming violent. Over the years he's gotten better at controlling his impulses. I would say about 90 percent of the time now he'll say what he wants instead of lashing out. When he was a teenager, the figure would be much lower, maybe 20 to 30 percent. So I have seen an improvement over the past 10 years or so. He's mellowed as he's aged, and he's much more able to control his impulses.
That's the good news. The bad news is that it's still incredibly stressful for my wife and me when these violent episodes occur.
Aggression and Aftermaths
Though we shouldn't suggest that all or even most autistic people are prone to violence, it's important not to sugarcoat the immense challenges nor to pretend such incidents don't happen. I know several parents and siblings who have been injured by their autistic loved ones: a friend whose son broke his sister's arm, a friend of a friend who lost an eye, etc..
Like James Wilson, I can also speak about autistic aggression from first-hand experience. My son has been sporadically aggressive since age five. My wife and our therapists have had their hair yanked on numerous occasions, and we've all been pinched, slapped, gouged, kicked and bitten too many times to count. The proof is in our scars, and even in the still-healing bite mark (from this past Monday) on my leg. Of course we know that most of Cam's aggression issues from his frustration — he needs to express himself but doesn't have the words. But that knowledge doesn't make you feel much better as you nurse your swollen arm or hold up your broken glasses; actually it makes you feel worse because you know that your frustration is nothing next to your child's.
In the aftermath of such episodes you are assailed by turbulent and conflicting emotions. Your wounded feelings are worse than your physical injuries. You are angry: my own child hurt me when I was trying to help him! You feel betrayed: my kid hates me. You feel guilty: our friends' autistic kid doesn't do this, so we must be doing something wrong (the insinuations of doctors and other parents add to this burden: they don't exactly say it's your fault, but they imply it by their suspicious looks and questions about whether you've tried this or that therapy — when they don't simply act incredulous). You feel sad: my child is in pain and I don't know how to help him. You fear for your own safety — will the next time be worse? — and for your child's: what if he hits someone who strikes him back or uses a weapon? At times you even feel despair: after our years of therapies, training and meds, how can this happen? It all seems worthless.
Obviously these incidents have taken a toll on our family's happiness and mental health, and they're a major reason why Cameron has to take medication. They've also made it difficult for us to find and keep competent therapists, teachers and aides. Not too many people will stick around to get walloped, pinched and bitten again and again. Of course we continue to work hard to anticipate and defuse these outbursts and provide better ways for him to express himself. When his routine is stable and he succeeds, the incidents all but disappear, and as he has matured and learned to channel his aggression and vocalize more, they have decreased; but because he's now a grown man, those that do occur are more frightening and dangerous.
There is no way to talk about such incidents positively. But to explain them away or remain silent about them does more harm than good by fueling the misconceptions that arise from the media's constant focus on "triumphs" and on the highest-functioning folks on the spectrum. Such stories shouldn't dominate the conversation; they should be told, however, along with tales of joys and victories, so as to achieve a true and honest representation of all aspects of autistic lives.
Aggressive incidents aren't the only dangers. For example, we spent most of this past Saturday at the emergency room after my son put his hand through our living room window, lacerating his palm and wrist; he missed severing an artery by an inch. He didn't mean to break the window; he was just being exuberant. After three hours in the ER, where his hand was neatly stitched and bandaged, we returned home. Within ten minutes Cam had pulled out the stitches. We returned to the ER. We discussed whether we should place a cast on his arm to prevent him from picking at the wound, then decided against it: Cam can't even tolerate bandages, so a cast would surely drive him crazy. He's left with an open laceration that will slowly heal on its own.
We can protect ourselves most of the time. But can we protect our son from himself?
My brother is calm now as an adult, but one wonders what would happen in a really bad situation.
As a child, however, head banging was a lot of it — I recall my father trying to stop it once and getting his hand shattered. Then there was the rocking and the screaming for hours on end. I spent a lot of time trying to escape it, but there really was no way to do this.
What we spent most of our time trying to do was to try and figure out what set it off and avoid the situation. For instance, if his shoestring was somehow askew in a way he did not like, that would set off hours of screaming when he was small.
As I've mentioned in previous posts, for us what seemed to work the best (and all cases are highly individual) was exercise. The so-called experts were generally useless — for them, the solution was either drugs (which made his behaviors worse) or blaming the mother (which created lifelong pain).
But what did seem to help was having him do what he could do — like shoveling snow. Then we thought weightlifting would be the thing. He was good at these things. It built self-esteem. I helped him with it, and lifted weights along with him, and that created some semblance of a sibling bond. He really took to that. He ran cross country, and I trained with him sometimes, running several blocks behind him (did it matter to him that I was there? Hard to say). But to me it mattered. Building strength, developing muscles and agility so that he could defend himself against the taunts — and I could too, of course. Gradually the head banging and other self-inflicted behaviors faded into the distance. Would they have anyway? Again, hard to say.
Storm Lake was poorly prepared when it came to education. He was kicked out of first grade, and my parents put him in special ed. There a young teacher took an interest in him and worked some with him — she and her husband would sometimes take him on special outings. We read to him a lot, played games as best we could. When he could hold down a job, he worked the cornfields and had the biggest paper route in the town's history. All of this siphoned off his tremendous energy and did seem to help.
As I mentioned, he's a very calm, middle-aged man now who reads westerns, loves Star Trek and holds down a job that he seems to enjoy and is good at. He seems gentle. We've seen none of the behaviors of his youth occur again. But whether or not any of this helped is hard to know. However, it certainly did no harm.
These are sobering posts. I haven't had such experiences. If anything, we worry about Sean being too much the opposite: too much of a rule follower, too worried he will transgress. The amount of anxiety this provokes in him is profound. I once came into his room late at night, when he was about 10, to find him crying. What's wrong, I asked. That time in the motel, he said. I ran ahead and got on the elevator without you and Mom. And the doors closed. What motel? I asked, not remembering. In Madison, he said. He was talking about something that happened when he was three.
We've never — that I can recall — raised our voices or spoken harshly to him. And, with one exception, his teachers have tried to understand him. But he worries — constantly — that he'll do something wrong; make a mistake; break a rule. He tries so hard to please. I worry about the situation Pam described with Hope: that someone will take advantage of him someday. Those are the days I want to win the lottery — and I mean a HUGE payout! — and build a beach compound somewhere that I can staff myself. Failing that, we're left to negotiate, as most parents are, the sometimes dank and drafty corridors of the helping industries.
Mark's and James's posts have already captured the experiences of violence, aggression, and self-injury, that have been an on-and-off feature of life raising Charlie. My son has been self-injurious — slapping himself on the forehead — since he was 2, and then head-banging (sometimes ferociously and over and over and over again), and then head-banging followed by biting parents/teachers/therapists when we tried to hang onto him. Windows have been broken, scars inflicted, holes punched into walls. There have been bruises (Charlie's forehead, our limbs — biting doesn't just pierce the skin), blood and, you better believe it, tears.
In writing daily online about autism since June of 2005, I have always been wary about how to present these sorts of things in words. We must be honest; we must make it clear, we love our children and are doing are total very best; who'd want to be (as Mark says), the one family whose kid "does that"? But I always worry that, by writing about violence and self-injury, my writing about Charlie has become sensationalism, and I'm playing into some desire for "autism horror stories" that lead to calls to "get rid of this dread disorder from the face of the earth" or some such.
On the other hand, it is impossible to intellectualize what it's like to be trying to stop your son from slamming his head into the dashboard of your car while trying to drive. These things can't be explained away, and Jim and I think that we would be poor parents if we did not say yes, this happened with Charlie, and seek means to stop this from occurring, from reoccurring. As far as we can tell, the source of Charlie's "behaviors" (huge and over-generalizing euphemism, but I'll use it for the moment) is his constant frustrations with a world that's not interested in him fitting in, with his struggle to communicate and express himself.
We know that the best way to respond is, indeed, peaceably, though that's not always possible when you are in said moving car. Many of Charlie's "outbursts" (another, less over-generalizing euphemism) stem from his tremendous need for physical activity, hence Jim's determined and successful — still in awe — efforts to go on 10-plus mile bike rides with Charlie, and the long swims (in pools and in oceans) that have turned us into a water-loving family. So much aerobic exercise has also had the result of honing Charlie's muscles: This kid oughta' ve been a linebacker. Certainly, he can carry more than half the load of groceries, much more than half the food being for him these days. We anticipate this boy will be a 6-footer. Me being five feet tall, the "Zen"-ness James brought up has long been essential.
We love our son every single moment. We just hope we can keep holding onto him.
I have little to contribute to this topic. Adam is not at all aggressive, but it's not that it hasn't crossed my mind. He's only seven years old and he seems very happy despite his father's recent leaving. We've still managed (or I'll be honest …I'VE managed) to keep life happy and on an even-keel for him.
IF Adam were to exhibit any aggression, or if he would have in the past, the challenge I would have would be as Kristina described — how to express the truth while not diminishing Adam or sensationalizing the incident or behavior.
I'm reading a lot about life writing these days. All I can say is, truth better be conveyed in great writing or else it just may be susceptible to the kind of consumption we may not wish to see.
Impulse and Aggression
One day when Isaac was very young, maybe two or so, we were sitting on the floor of his bedroom. My sister had bought him a train set for his birthday, which I had set up and was trying to get him to play with, with no luck. At a certain point he picked up a train, looked right at me, and threw it at my head. It hurt like hell.
When my husband came home, I went to the eye doctor to make sure everything was okay, which luckily it was. But I was scared, even though friends with typical kids said their kids did that kind of stuff, too.
As it happens, he's a gentle kid, not aggressive in the slightest, but I'm also aware that the more tuned in he is to the world, the more his frustration grows. So there's this odd balance between trying to expand his awareness while helping him feel his frustration enough that he learns but not so much that he explodes.
Now that I know so many children on the spectrum, I am not sure I understand the difference anymore between poor impulse control and aggression. But I do know this: most people don't really care; the action is the action, no matter what causes it, especially if someone gets hurt.
As a follow-up to the last question, could you each elaborate on the services you've received at different points in your child's or sibling's life. Some of you have touched on this before, but it would be helpful to hear a bit more. I'm thinking about respite care, day care, medical care, counseling, job coaching, OT, PT, speech, sensory integration, ABA — you name it. Could you indicate what services you had to pay for and what services might have been provided for by the State, say, or by insurance. We've all heard stories about how expensive "treating" autism can be. What services did you find especially needed and effective? Which did you find ineffective? How did you locate these services and coordinate them? Within your respective family units, who was primarily responsible for this coordination? What sort of financial hardship, if any, did you incur? What sorts of services have you NOT been able to secure and believe would make a crucial difference in your child's or sibling's quality of life? How, if at all, have you involved your child or sibling in the process of determining the services you have sought? (I think of my son, DJ, being interviewed by CNN's Dr. Sanjay Gupta, who asked, "Should autism be treated?" to which DJ wittily replied, "Yes, treated with respect.")
Seeking and Sifting through Services
I've written much on this topic in my original Joy of Autism blog, which is now archived at http://www.esteeklar.com. So that I don't become (or feel) redundant, I will try to summarize in order to get to what I think has become important for Adam and our family.
We live in Toronto, Canada. The only services that are subsidized by our government are a portion of ABA (called IBI here in Ontario, the province where we live), and some OT and SLP and respite programs IF one receives these services through approved agencies. In other words, if you do not have the funds to hire your own therapists, or seek your own shadows, community assistants or whatever one wishes to call them, then this is basically it. Our public schools are equipped with Educational Assistants for children with special needs. One has to go through a 6-8 week process of being deemed special needs, which is a very frustrating process for many families as the special needs child is neglected during the first crucial months of starting school until they are accepted as special needs. Then, if approved, the child will likely be partially integrated into the mainstream class for part of the day and attend a special needs classroom for the other part. I've not heard one story of a family who has been fully satisfied with the education of their autistic children in such classrooms. What I hear is that the children are under-educated and left alone for the greater part of the day.
I did not choose this option for my son, Adam. We did what everyone told us to do here in Ontario: we sought out an ABA agency and began our "treatment" of Adam within a month of his diagnosis, when he was 19 months of age. This lasted a couple of months until I fired the agency. I brought on SLPs who seemed to know little about autism. I tried Verbal Behavior, RDI, Floortime. The happiest and most gratifying early moments were our times with occupational therapists. This was the only structured activity that really seemed to make a visible difference in Adam's life. I think we went through an SLP a year. Today, we do not have an SLP; however, considering their training (not on devices — they are all averse to using them here), Adam may now be ready for some articulation lessons as he tries hard to speak but tends to blend his phrases so that they are difficult to understand.
Since I saw that Adam could learn well on the computer, I have been very interested in the use of devices; however there is such little support in Toronto for the use of them due to the FC controversies. I had to do much of that myself, and Adam is mostly independent when it comes to doing schoolwork but still needs help when conversing. I have to say that, as Adam has such difficulty communicating with words, his speech actually improved when we started using a keyboard. Yet, it strikes me to this day that my soon-to-be ex-husband gave me such a hard time about using the device. As a former lawyer, I believe too many episodes of Law and Order (there was a piece on FC in that series) influenced his view that FC was just hooey.
It is challenging to bring up the term here, but we carry on because we see results. Adam is very self-motivated and curious about his world. He wants so badly to do things on his own which is why when he is focused, he does not even want anyone's help on the device. If he feels safe with the people around him, with that combination of calmness and focus, then he is more able to use it on his own.
His occupational therapists work on Adam's fine motor skills (he has such difficulty with hand-writing) and sequencing now. Adam's motor skills in general have improved with other "non-therapy" programs such as swimming, trampolining and piano lessons — all done without therapists but with a mother who can help others to teach him. I was so pleased when his swim school took it upon themselves to use pictures to help Adam do what they wanted him to do in the pool. Of course, the use of pictures and words and making things clear is extremely helpful.
Adam attends a Montessori school, which has been wonderful. Adam participated in both major school plays fully and did not need assistance. He recited an introduction to his French play — all the kids were prompted by sign language that the French teacher created to remind them ALL of their lines and Adam was no exception. Except, I was in awe that Adam did the introduction all on his own. He has overcome so much anxiety over the past few years, and I believe it's because we always encouraged him and gave him our patience.
He had his first piano recital this year as I adapted the "notes" to tactile letters that he could feel and then correspond to the keyboard. When the audience clapped, he turned around with a surprised look and smiled like "hey, you like me…you really like me!" and then he played his second song!
Despite the year's challenges in our personal lives, Adam has thrived, I believe, by a foundation that I worked hard to establish since the early days of ABA therapists and of experts who really wanted Adam in special schools. Adam was voted "the most popular kid" at his camp last year. He has fully verbal friends who want to play with him. Adam is an affable child who seems to be able to forge relationships without many words.
Sometimes I wonder if I'm just a mother who is deluding herself, as others may see Adam differently than I do. And then I remind myself that I've been given such a huge gift — the gift of being able to relax and not see the differences in a negative or urgent sense at all. Supporting Adam and working with his unique needs is grossly different than "doing therapy" and fighting a system. I keep thinking there may be struggles ahead, and then I wonder, too, if we've just found a way to finally be happy.
Various Supports Over the Life Course
I felt a bit at a loss about how to answer this post since, when Hope was growing up, I didn't pay much attention to the kind of supports she received, except when they involved me. I've already talked about her adult services and supports: the residential agencies, the vocational agencies, the sheltered workshop, the "behavior specialist" and program imposed on her without our knowledge. It has also been a struggle for Hope to get speech/language help for FC, since it has been anathema in Rhode Island since the late-1990s. It is sad, because she works down the hall from the URI Speech/Language department and students are always wanting to work with her. But when they hear "FC," they can't back away fast enough. Hope gets support for her FC (mostly related to staff training I think) through specialists in Connecticut, but I'm not sure if that is paid out of pocket, through insurance, or by the agencies that support my sister.
For several decades Rhode Island had visionary leadership in the state Division of Developmental Disability. It was once a unique and progressive support system, now in the process of being dismantled. Mom received advice and insider information from lots of wonderful state-supported nonprofits. The local ARC was advocacy, and not service, oriented and very innovative. I don't think it exists anymore, but I worked there briefly in it's final days, and that's how we got the lead to put Hope on the waiting list for secton-8 housing. I don't think the RI Parent Information Network existed when Hope was little, but Mom and Hope got lots of support and information about innovative programs and grants from a Rhode Island consortium of DD service organizations. I'm forgetting the name, but it is very human rights oriented. That's how we found out about FC and the Community-Supported Living Arrangement (CSLA) grant. There is also an organization called Parents and Friends for Alternative Living (mom has been on the board forever and I was on the board for several years) that helped Hope get out of the sheltered workshop and into her own apartment. Finally, there is a self-advocacy organization called Advocates in Action. All these organizations and groups received state support. I don't know what they survive on now.
Regarding Hope's childhood, I consulted with our mother. She says Hope received OT, PT, and SL at school. The school had a model apartment that Hope visited to learn activities of daily living, and the school provided some respite and sibling programs, that I already mentioned. She participated in town recreation activities for children with disabilities, and Special Olympics. There was a very helpful for-profit group home down the street that used to give Hope rides to recreational activities that they also attended (swimming, bowling, Special Olympics, parties). Sometimes they would take me and our other sister as well, which we loved. They also would let Hope wait for the bus for the sheltered workshop at their place, since our mother left for work earlier than Hope did.
Hope got medical care for vision issues (lazy eye I think) and seizures. The seizures went away when she was about 6. She was off meds for over 10 years, but they came back when she was in her late teens. She's been on meds ever since.
As an adult, Hope participated in grant-funded music and drama activities through the great local ARC. The CSLA grant provided respite as well as working on activities of daily living in the house. There were times when respite time/money was provided by the state and other times that our mother had to contribute. A few years ago, when Hope was living back home with our mom, respite money was provided by the state when our mom and step-father went out of town or did things that did not involve Hope.
Hope currently pays for a therapeutic horseback riding program which is $50 an hour. She did this when she was younger as well, but it was much cheaper. She is covered by our mother's Blue Cross plan with Medicaid supplementing, so we only pay co-pays to doctors who don't do Medicare, like her neurologist.
It took a year to get her most recent communication device. Blue Cross denied it twice. Medicaid finally paid for it after mom and Hope jumped through all their hoops. They had to go through RI Hospital where she was evaluated by the speech and language dept. and they looked at the different options. Hope still is involved in Special Olympics and local recreation, though she lives in a different town now, so the program she's participated in for over 30 years is starting to hint she should go somewhere else. Hope goes on vacation trips with Trips R Us and other groups that are paid for with Hope's or our mother's money.
Therapies, Drugs, and Doctors
Because we've lived with autism for almost twenty years now, I can check off nearly every treatment mentioned: OT (yup); PT (uh-huh); speech therapy (years of it); sensory integration (best achieved by bouncing on a trampoline, Cam's favorite object for years). We maintained a home ABA program for six years, and paid for it all ourselves, which set us back many thousands of dollars per year. Cam learned quite a few good skills, though he seldom generalized those skills outside of sessions. The other treatments have been at best moderately effective, which is not too surprising given our son's severe fine motor problems, sensory processing difficulties, executive function disability and speech impairment.
The state offered no services in those days; nowadays a Medicaid waiver might pay for most or all of them, if one qualifies (there are 900 kids on the waiver in Maryland, with a waiting list numbering in the thousands). The waiver pays for respite care when Cameron is not at school. It is helpful to have these services free of charge, but, even more than with our ABA program, finding good staff is a chronic problem: not all are competent, they often arrive late, call in sick frequently, leave the program, and so forth. But it's better than nothing.
My wife and I received counseling for a year or so after our son went to his residential school. This treatment did indeed help us get through our shell shock and guilt. In the early years, however, our encounters with the medical profession were very unsatisfactory: most physicians were ignorant, and the rest just wanted to prescribe medication. For instance, Cam took allergy treatments for more than two years (we spent thousands of dollars), but when we stopped them, we saw no change in him. It was a waste of money, which proved to us that parents are easy marks for such "therapies": we see what we want to see.
During one rough period when Cam was about seven — constant meltdowns at school, aggression, general misery — we visited a highly respected neuropsychiatrist, who listened empathetically to our stories, told us Cam had lots of potential, and prescribed Klonopin, but after about five months, our son suddenly developed an allergic reaction and we had to take him off the drug.
The neuropsych cautioned us about withdrawal symptoms, but we weren't prepared for what followed. As the drug wore off, Cam's mood swings grew violent. For several days he took long mid-day naps; he'd fall asleep those nights, but wake at 2 a.m., his body covered with sweat. He had spells of uncontrollable shivering, as if caught outdoors coatless in the dead of winter. In short, our seven year old was going cold turkey. After two weeks of this torture, Cam returned to his old self. We swore we'd never again put him on a drug.
At the next visit the doctor told us that these horrible symptoms were all part of "normal withdrawal from the drug." Easy for him to say. As we prepared to leave, he asked if we'd take part in a new study in which they'd take spinal taps to see if the spinal fluid of autistic children is chemically different from those of other kids. It might "provide a basis for better analyses of their brains and the chemistry of their central nervous systems." While we were describing our son's season in hell, the doctor who'd helped to create it was thinking about his next research project. To him Cam was not a kid; he was a guinea pig.
Worst of all was our belated realization that his behavior off the drug was no different from what it had been while on the Klonopin. We'd put him through all this for nothing.
We did try other meds, which helped at times, but never consistently. During his teens he endured two lengthy hospital stays when side effects from the medications caused severe behavioral problems. During the first stay, he had to undergo rounds of tests, but ultimately we found a drug that really works for him and has made his (and our) life much better over the past five years. Even so, it's a constant struggle to determine when the medications are helping and when they are doing the opposite.
Like many disabled people, Cam now has a whole raft of physicians at his disposal — a neurologist (for his seizure disorder), a psychiatrist, a gastroenterologist, his regular pediatrician — who know him well and provide excellent care. He isn't capable of choosing what he needs, though he certainly prefers certain doctors over others and sometimes refuses to go to his psychiatrist because (we hypothesize) he doesn't like to hear us talk about him. When the doctors pay attention to him, however, he actually enjoys the visits.
He will need a one-on-one aide when he moves out of school into adult services. We've found over the years that this is the most important position of all: a competent and caring aide does wonders for his confidence, independence and overall demeanor.
In our early years, we tried different things — ABA, OT, auditory treatments, teacher aides, others. The most extensive work was done with ABA. We lived in a college town then and recruited students to work with us. We found students interested in special ed, in autism, or just in kids. We never paid for any of this — we would not have been able to pay — so we were lucky that way.
After I read K. Maurice's book, Let Me Hear Your Voice, I contacted Lovaas' office in LA. I was ready to move there from Wisconsin. I was already looking into jobs and apartments. But the book had garnered so much publicity that Lovaas had set up a kind of travel squad — therapists who would come to your town and show you how to create your own program. Working with a local therapist, we brought a therapist to our town. Many families besides ours participated in the workshop, and it was judged a success — so much so, that Lovaas came to our town the following year to meet with even more families. We met with him and have from that time a great photograph, published in our local newspaper, of my son playing with Lovaas.
I was not aware of the controversies about Lovaas in those days, and I certainly have different feelings about Maurice's book today. But the actual program was probably beneficial. It brought my son into contact with lots of people and had him doing things — interacting with volunteers, mainly — that he would never have done before.
Services: A Delicate Balance
When Isaac was first diagnosed at about age two, we jumped right into speech therapy; occupational therapy wasn't far behind. We also started using the Floortime method, since we had read Greenspan and felt his approach (developmentally appropriate, individualized, relationship-based, or DIR) seemed more flexible than other approaches we had seen.
The first speech services we received were, in retrospect, a disaster. Isaac had a different therapist each day, and while they all seemed sweet and well-meaning, he had to re-orient himself to so many people that eventually he started to sob whenever we got anywhere near the vicinity of the building. Finally, we gave up and found another therapist — someone we liked and trusted.
Not long after that, our developmental pediatrician recommended we try Applied Behavior Analysis (ABA). My husband and I were horrified at the idea; it seemed completely against our philosophy and instincts, and conjured images of Skinner boxes and mindless obedience.
But in the interest of open-mindedness and putting our son before our own intellectualizing, we decided to make a couple of calls and feel it out before we made any big decisions.
The first place we called annoyed me completely; it's a pretty well-known ABA center in my area and I felt they were giving me the "every second you waste is limiting your child's synaptic potential" hard sell — and I resented it.
But before we dismissed the whole idea out of hand, I emailed our speech therapist and asked her opinion. Part of the decision was that the state would pay for these services, and we were already feeling the financial effects of so many therapies. The other factor was that some of these hours would be used for shadow support at preschool — something Isaac desperately needed.
So it was a larger decision for us.
This speech therapist had been the first person to tell us that Isaac really wanted to communicate. She had seen him in school and given us examples of efforts he was making to connect, but that his teachers hadn't noticed (that was his first and last year at that expensive private preschool).
This was critical to us, not only because we desperately wanted some good news but because we felt that he was exponentially more engaged with us than he was with anyone else, and we were at a loss for why other people couldn't see it.
I fully realize that several therapists in those days thought we were delusional. Out of the house, he was nonverbal, perseverated frequently and his eye contact and gestural vocabulary were very poor. At home, he was charming, warm, and (even without words), quite funny. We felt he "got" things but knew his receptive language was severely limited. We were very confused.
The speech therapist suggested I contact an ABA provider who, she said, was using a more child-centered methodology. She had been trained in the classic Lovaas tabletop method but had more recently been influenced by Lynn Koegel at UCSB, who was integrating more play into her approach. I grilled her, saying that Isaac needed to work with someone who would follow his interests and meet him halfway. Long story short, we ended up working together.
So we began this more play-based style of ABA, which helped give Isaac a lot of useful context and practice in many different areas. He had initiative, but he often didn't understand what was expected of him. And he didn't have confidence or the physical dexterity in those early days to follow through with play, so he'd wander and perseverate instead.
Around that time we parted ways with our Floortime consultant and began seeing someone else, who, in the first session, told us she thought Isaac's main challenge was actually motor planning rather than speech.
And so much fell into place: the way he wanted to communicate but couldn't speak or sign; the fact he'd never used a pacifier, his disinterest in toys and preference for physical play and stories; the fact that he seemed so "quick" cognitively but couldn't translate that to physical gesture. We knew he had motor planning challenges — his OT evaluations were painfully clear — but to see motor planning rather than communication as his central challenge made so much sense.
Once we got going with ABA, the therapists found that Isaac learned so quickly that they frequently had to change up their data collection and techniques multiple times within a single session. They proved to be extremely resourceful though, and he was a rewarding pupil, for which we were grateful.
And then something wonderful happened: Isaac started to insert his own ideas into play. Today he'll even make up his own characters and names, or change the words in songs to make us laugh. It's not anywhere near as rich as typical kid play, but it's miles away from where we were.
The sad part about all of this was that when I tried to share the successes we'd had balancing Floortime/DIR with Applied Behavior Analysis, I got a lot of resistance. At one point, I shared a video we'd taken of Isaac's ABA session on a Floortime board, and was summarily flamed for daring to suggest that any approach other than pure DIR could have value. But — at least in our case — it did, and while I am a passionate believer in blended therapies, I worry that so many of the approaches tend to exclude those different from their own.
We lost the ABA support when Isaac got into Kindergarten, but we continue with OT, speech and Floortime at home.
Isaac just started first grade. He's come such a long way, and I do think the balance of his therapies has been really effective for him, because the ABA gave him physical confidence while the Floortime helped build his engagement and imagination.
I don't know if this approach would work for other kids, but I'm grateful that we found people who were flexible enough to try to create a program around Isaac, and intuitive enough to change it as he grew.
I'll focus on Ralph's question about what services have we not received, and wished we would have. I want to say that there is nothing, that we've been able to get everything for Charlie that we have thought essential and that we have been able to make up for everything that we couldn't. Like many, like all of us, Jim and I have thrown ourselves 110% + into changing our lives and ourselves to do our best by Charlie. There have been miracles and a lot of hard work, and Charlie has learned a great deal and come a tremendously long way. He struggles plenty academically, with reading and writing in particular, and he still has tremendous "explosions" (currently mitigated due to a huge change in his medication, along with redoubled efforts by Jim and me).
Recently, due to the situation alluded to in previous postings here — our school district saying in so many words "Charlie can't go to school here"-I have been making the rounds of visiting schools for autistic students. I've met many parents of much younger children — just diagnosed children — and have been reflecting on whether we did enough, whether we did what is right, and on and on. We would have loved for Charlie to get a spot in one of New Jersey's small private autism schools, but these doors have always been shut for Charlie even before we sent in our letter of inquiry. From listening to schools' directors, it's been clear that we have, in our not very systematic and ever-loving way, been able to teach Charlie to do lots, from the dreaded trips to the barber and dentist to riding his bike (and even a bit of typing — Charlie prefers to use his left hand while he's encouraged to use his right at school) to talking and communicating.
Charlie has learned to do all this through years of services and teaching starting when he was 2 years old in St. Paul, Minnesota. He's had ABA at home and in public schools in New Jersey (and in one private school for a brief period), speech therapy, OT, piano lessons, cello lessons, and music therapy when he was little. What's especially made a difference has been the individuals doing the therapy — delivering the services — and their willingness to look at Charlie and where he is first, and then thinking about the teaching. It never works to start with a set theory about teaching him (or anyone, really) or a set of presumptions. Our on and off ABA/Lovaas consultant has often reminded us that, when Charlie's learning "gets stuck," we need to think about changing our teaching methods and what we are doing.
So the one thing I've wished that we could have provided for Charlie and that he has not gotten is, again, a placement at a very small number of very small private autism schools in New Jersey. I don't think that he would have "recovered" or any of that, but he and we would have been spared the school district shenanigans about his placement and services. Charlie has learned plenty and continues to do so and we've all learned to endure the struggle, which is truly one for all the right reasons. Maybe you can't get what you think you need, but you can start where you are and see what you can provide with your own hard work and all of your heart.
Ok, folks, here's the second-to-last question. I'm wondering about the impact that autism has had on your relationships — either marital or sibling. We've all heard in the popular media that divorce rates in families with children with autism are as high as 75% — that figure is probably apocryphal, and it is surely a symptom of the catastrophizing that surrounds autism generally. Moreover, divorce rates in families without autistic children are well over 50%, so it's not as if autism causes divorce, as some have suggested. We've all heard as well about the problem of "sandwich kids": the non-autistic child who feels shortchanged by his or her parents as they attend to an autistic sibling, or who feels burdened by caregiving responsibilities other children don't have. How has autism affected your respective relationships? Remembering that having children of any kind leaves less time with one's partner and that siblings naturally compete for attention, I'd love for each of you to speak as honestly as possible about autism's impact. I know from my own experience that one must be prepared for additional sacrifices when parenting a child with autism, but I also know that autism has brought my wife and me closer together. Fighting for our son's dignity and respect, demanding his full inclusion in school and community, watching him develop into a self-advocate — these things have provided a richness in our marriage and family that might not otherwise have been present. Yes, I am exhausted all of the time and, yes, I rarely get to go to dinner with my wife alone, but there have been many unforeseen and rewarding compensations.
Though I don't have any statistics, only anecdotal information gathered from friends and acquaintances, I would be surprised if the divorce rate among parents of autistic children wasn't extraordinarily high, given the stress involved in parenting children diagnosed with autism. In my case, I can't say that parenting Sam has either driven my wife and I apart or brought us closer together. We've survived with our relationship intact, though I would never want to play down the difficulties and hard times we've experienced along the way.
For us, the more severe problem has been the sibling issue. Sam's two sisters rightfully feel they were cheated, not given equal time and resources. Even though they are in their 30s and 40s now, they still find it difficult to visit us or spend time with Sam. We accept their feelings and tell them they have every right to feel the way they do; we only ask that they try to understand why we made the decisions we made. To each according to need has always been our philosophy.
The funny thing (sort of) was that after my three children read the "Family Relations" chapter of my Weather Reports memoir, where I was brutally frank in discussing these issues, none of them would talk to me. Even Sam, who has his own dog-eared copy of the book, refused to talk to me, saying things like, "I can't be seen with you." The silent treatment lasted about two months, after which they all wanted to quarrel with what I had written. We tried to facilitate the conversation, asking all three to try to understand each other's point of view. They did, sort of. Or at least they stopped outwardly complaining about feeling cheated, resenting each other, and so on.
What we took from all this was that we couldn't please any of our children, ever. So why try? I'm joking (sort of). Sam will still say on occasion, "I don't get enough attention!" Maybe he's secretly comparing notes with his sisters.
But through all the complaints and resentments, my wife and I have maintained a strong relationship. A sense of humor helps. Actually, a sense of humor is mandatory.
Dynamics with Family, Neighbors, and Friends: A Sibling Perspective
Our parents divorced when I was 13 and Hope 14, but I can't see that it had anything to do with autism. After the announcement was made, everyone was crying all the time. I remember it took Hope days to figure out what was going on, and then she suddenly started crying inconsolably.
I remember growing up with a sense of wanting more attention from parents and close relatives, but again I don't know that this was disability related. Most of my jealousy in this area was aimed directly at our younger sister, not at Hope. Hope and I were always close. I don't remember being jealous of her (except when very young — I thought her school was more fun than mine), but there are videos when I was 5 or 6 in which I am clearly jealous of the attention our younger sister is getting. You can see me subtly engaging in mild aggressions and unsuccessfully grandstanding for attention from the adults (at least as far as I knew, obviously they were interested enough in what I was doing to catch it on film).
I remember sometimes feeling proud of showing off my ability to take care of Hope in front of friends, neighbors, and relatives. I usually got positively reinforced for doing so. In one of my absolute earliest memories, I must have been about 3 and was very angry because an adult neighbor, whose house I frequently visited, was not answering the door, not letting me in. I remember kicking and kicking at her door, until she finally came out and yelled at me. She said that I wasn't allowed to visit with her that day because I had brought Hope over to her house on an earlier occasion without my parents' permission. I don't remember doing that or whatever may have resulted from my doing that. I just remember kicking and kicking that door and wanting to go inside and being punished by not being allowed. I remember being outraged and seeing absolutely nothing wrong with what I had done.
I remember once, while in elementary school, waking up in the morning very surprised to find our aunt and uncle and grandparents in the house (they and our grandparents lived about 5-6 hours away in another state). Hope was very sick with pneumonia and something else (something rare) and almost died. She had been taken to the hospital in the middle of the night. So when I woke up, my parents were missing, replaced by my aunt and uncle (I think my grandparents were at the hospital), who got my little sister and I ready and off to school as best they could. I don't remember anything else about that incident, and fortunately it is the only time I can remember something like that happening. I don't remember the seizures Hope had when she was little, but I was a junior or senior in high school when she started having them again. Either she fell and started seizing or started seizing and fell in the bathroom. That was the only dramatic incident with seizures (I think). Since that time she has constantly been on Dilantin and other meds. I can't say I was jealous of any of these experiences nor did I ever begrudge her the attention she got from them. They were just scary.
I remember being embarrassed when Hope would make a scene in public places, waiting in line at the supermarket or bank. It was especially bad when this happened in front of my friends, scaring them or making them laugh (even worse). I learned Hope was a litmus test for friends. The best and rarest friends treated her as a person and interacted with her. Most of them pointedly ignored her, and a few were openly fearful and refused to go near her or (in more extreme cases) refused to even come to my house. A few neighborhood kids (not friends) tried to get her to do embarrassing things for their amusement. I remember feeling so angry and impotent at such times.
Even though I was the middle sister, I had the role and responsibility of the oldest, and it was up to me to stop these situations, which could be scary and intimidating with, of course, no adults in sight. Hope had no friends in the neighborhood, and my younger sister and I had marginal status, so these episodes only made things worse for us. I remember one time, while in elementary school, a group of neighborhood kids asked permission to take Hope out for a walk. I was not invited. Feeling excluded and also not trusting those kids for a second, I followed sullenly behind as the procession went around the block. It's the only time I remember such a thing happening. Mostly Hope was either ignored and excluded or ridiculed by the neighborhood children. Hope concurs, typing recently, with tears in her eyes that "kids were mean and nasty" to her when she was young.
Domestic Relations and Autism
My wife and I have only one child, and it's hard to see how we could have been fair to a second, given the enormous amount of attention that our autistic son requires. I don't know if any verifiable statistics exist concerning the divorce rates of parents with autistic children, but I don't doubt that the ratio is higher than the average. My wife and I are still together (going on 28 years now), but living with our autistic son created extraordinary pressures that could easily have wrecked our marriage. It didn't help that we both sustained demanding careers.
Because of Cam's many needs, we dared not leave him with anyone else; thus we almost never dined out, went to movies, or did anything else together outside the home that didn't concern him. We became cut off from our extended families — who live 3,000 miles away, in any case — and from friends and colleagues. And though we always maintained a united front when dealing with therapists, physicians, school personnel and the like, our home life was a different scene. Cam's relentless challenging behaviors, the oppressive sense that he was making little or no progress, the grinding atmosphere — sameness punctuated by terror or uncontrollable chaos — encouraged my wife and me to guard fiercely our individual moments of peace and privacy — to carve out tiny spaces (work, favorite TV programs, hobbies) where each of us could create order. We craved local coherence; it was as if Cam had made us autistic.
We also became uncommunicative and resentful: I resented the hours she spent at work which, in my mind, left me holding the bag; she resented what she perceived as my expectation that she owed me something — that I pushed her to work a double shift that left her exhausted (in earlier years, the roles had been reversed). Each of us needed a scapegoat, and each of us filled that role for the other.
The worst scenes occurred during Cam's aggressive episodes: if I confronted him (a mistaken approach — which I knew even then), my wife would defend him against me. This unhealthy, even dangerous pattern was caused, as our shrink gravely informed us, by the inaccurate stories we were telling ourselves about our roles as parents, about Cam, about our marriage. I saw everything through a haze of failure: I felt I had failed as a parent because Cam hadn't recovered and hated myself for my anger. My wife's story was of a beleaguered, exploited working mom who got no respect and no time to herself. Only when we learned to change these narratives — to jettison both the story of failure (derived from an inability to accept Cam) and the tale of exploitation (based on a misunderstanding of motives) — and see the positive aspects of our life with Cam and ourselves were we able to break the pattern. But we couldn't do that while caught up in the daily hurly-burly.
Every parent and sibling has to find his/her own path, so I certainly wouldn't recommend our course for anyone else. We know other parents of autistic children who've prospered, though in most cases their happiness has been the result of their child's successes. We've seen others who have experienced worse: divorce, hospitalization, coping with their child's angry or emotionally fragile siblings. It's possible that we are weak, though most people to whom we've described our experience say the opposite. In any case, my wife and I believe that our decision to find a residential school for our son saved our family.
A Family of Difference
Actually, Ralph, the figure I've seen regularly trotted out by doom-and-gloom-autism-needs-to-be-cured sorts of organizations like the NAA is that 85% of parents of autistic children divorce. How autism wrecks family relations and families is regularly noted as why we need to prevent, get rid of, etc. autism.
It will sound clichéd, but Charlie being on the autism spectrum has both put incredible, indelible stress on our little family of three, and also made us much, much stronger; made Jim, Charlie, and me more of a tight team o' three than ever.
I've regularly written about how, June of 2001, we packed up our green Subaru station wagon and drove through St. Louis' Gateway Arch back east, back to Jim's native New Jersey. We did this because we wanted to find schools and services for Charlie that we had heard would be better than what he would get in St. Louis (at that time in St. Louis, at any rate). And it was much easier to leave behind a full professor endowed chair position (Jim's) and a tenure-track assistant professor position (mine) because we very much wanted to be back on the east coast where Jim and I certainly felt more at home.
It put plenty of stress and strain on us; I often thought of The Aeneid being described by Virgil as fato profugus, a future "from" or "of" or "because of fate." Certainly we have had many wanderings and many times been nomads. Even after we came to New Jersey, we still moved twice, to two more towns and even more residences. Charlie's being an only child has, I think, made our many moves possible, or less hard than they might have been. One move brought us to the basement of Jim's parents' house, and I could only imagine how a sibling might have sat fuming at us, decidedly enraged that she or he had had to move.
Living with Jim's parents had, as anyone may imagine, an interesting (understatement) effect on us as a family and us as a couple. We have long given up on getting to go out "just the two of us," except for once in a blue moon (usually, when my parents visit). While we did have fairly regular babysitters when Charlie was younger, it's been harder and harder to find and train people as he has gotten older (though our most recent babysitter was one of the best). Jim and I both work full-time and we have fairly long commutes (Jim especially) to get to our jobs. During the school year (we are both professors), teaching schedules, departmental and college/university obligations, and the errata of life mean that we can spend our days switching off being the one watching Charlie. There are feisty back-and-forth exchanges and there is harmony, and a mutual desire for mutual understanding and attentiveness.
And yet, being Charlie's parents has given us many more moments of having to work together, in concert, and as a tight, tight team than most couples might, I think, ever have to experience. We always present a united front when sitting down with the school district to discuss Charlie's education and services. We both go with him to many doctor's appointments. For one thing, Jim and I are very different in many ways — let's say, we have ADHD and OCD in our marriage, with one party more intuitive, one somewhat more analytical (somewhat). We consequently see things differently or, rather, we notice different things and interpret these in different ways and I think this has been to Charlie's benefit. We pair off "activities": Jim and Charlie ride bikes. Charlie and I go grocery shopping. Jim gets Charlie a haircut at the barber's. I take Charlie to swim laps. We all swim in the ocean and stand in the sand and surf, and we stick together.
We've realized that we're a different sort of family. We're a family of difference and of acceptance of each other. And always, of love.
Like Mark and his family, and Kristina and hers, we are a unit of three. We made a decision early on to structure our lives so that each of us has the opportunity for alone time; it is so essential to our personalities that we couldn't have survived otherwise. And it helps that we live in a big city, with lots of things to do and a son who is more than content to spend a day riding buses or going to the Planetarium or taking a walk. So we generally split Saturdays and spend Sundays all together, but there's a decent amount of room for variation.
We've also made an effort to include Isaac in as many activities as we think he will enjoy; our hope is that he will learn to handle a range of public places from restaurants to museums. We're generally on an upward trend there, though there have been some spectacular failures along the way.
The hard part in all of this is to remember that my husband and I were a couple before we were parents and to give our relationship the attention it deserves. It's difficult, especially because Isaac still requires so much supervision, and because we both tend to defer to the other, a dynamic that we recognize but have trouble breaking.
I think a big part is that we also both feel pressure to be the perfect special needs parent: always understanding, always calm and patient, always putting his needs before our own. But that is a dangerous fiction, and we really try not to buy into it.
Our latest triumph, honestly, and the one that's made the most difference, is that we've finally succeeded in getting Isaac to sleep in his own room. He may pound down the hall in the middle of the night and dive under the covers with us, but we finally have at least some time in the day when it's just the two of us.
And we don't feel guilty about the occasional movie or dinner out either; we're lucky enough to have childcare providers whom Isaac loves and trusts, so we can keep up at least a partial "date night" schedule.
None of this gives me any insight into whether our marriage would be different had circumstances been different. When my mother was my age, she was already divorced from my father, so I don't really think in those terms. In any event, it's impossible to imagine any other child, any other marriage, any other reality than the one I live in now.
Each of you now has a chance to conclude the roundtable in an undirected fashion. Feel free to raise issues that haven't come up. Many thanks for your participation.
I wanted to end on a positive note, so let me share a story about my son Sam. Over the last few years Sam has developed a true friendship with his youngest caregiver, who's only two years older than Sam. Every Friday afternoon they go to Uno's Pizza, Sam's favorite pizza restaurant. Sam has become Uno's most popular customer; when he walks in everyone greets him the way Norm was greeted on the old Cheers TV show: "Sam!" Sam has developed a special relationship with one of the Uno's servers named Olivia. Anyway, last Friday, my wife and I received an e-mail from Mike, Sam's buddy, describing an incident that afternoon at Uno's:
last friday sam did one of the sweetest things i've seen. it was olivia's bday and after we were done eating she came over to talk and sam stood up and said, "olivia i want to tell you that you are my favorite server i've ever had. i hope for your birthday and for the rest of your life that you get everything you want and nothing bad ever happens to you, cuz i really like talking to you and you deserve the best out of life". olivia and i both stood there for a second with our mouths wide open (because of how sincere he sounded) and then olivia said, "wow sam i think im about to cry right now, thats the sweetest thing anyones ever said to me, can i give u hug? you and mike are my favorite customers i've ever had and you just made my birthday!" sam hugged a very pregnant olivia for about 10 seconds and her and i both got a little teary eyed. after the hug sam said, "i mean it olivia i hope you get everything you want out of life." she said, "thank you so much sam" and then looked at me and said "WOW, what a great guy!"
Of course, Sam is not always this sociable or able to empathize with others; still, it's moments like these that lead me to reject the Theory of Mind argument. I know that Sam, given the right situation and people who care about him, can connect with and think about other people. Though it's taken many years, he has made lasting friendships with people who truly care about him.
One important thing that Cam and I share is a love for music.
I started piano lessons at age seven and have played professionally since age 17, so I was thrilled by his early interest in music. Toddler Cam loved his music cassettes (everything from Peter and the Wolf to Pete Seeger) and sing-along videos, and by age six he could find his favorites on his Fisher-Price cassette deck and knew many songs by heart. His top choice was "This Old Man." Thank God for the old geezer! In moments of severe stress — at the dentist's office, waiting at the grocery checkout — we could break into the song, and Cam, no matter how upset, would join in — "This old man came…" "Roaning hone!" — and quickly compose himself.
We've listened to Raffi In Concert at least 5,000 times; his videos and Disney sing-alongs have been the soundtrack of our life with autism. There is nothing more hilarious, according to Cam, than the fact that "there are 364 UN-birthdays" in a year.
In middle childhood, he suddenly developed an interest in push button musical toys: a piano that played "Skip to My Lou" (best when repeated 40 times in a row); a guitar that featured "Jingle Bells." But we really hit the jackpot with a "Blue's Clues" radio, which played six songs from the TV show. The number one hit was the Solar System Song: "Well, the sun's a hot star / Mercury's hot too / Venus is the brightest planet / Earth's home to me and you," and so on, all the way out to Pluto. For a couple of months the toy was Cam's own satellite, perpetually orbiting at arm's length.
During one visit to the grocery store, while my wife and I discussed lunch meat, Cam slipped away. After a moment of panic, we fanned out in search of the lost boy. Then from a couple of aisles over, I heard, "Well, the sun's a hot star / Mercury's hot, too"; we found him in the soda aisle, right hand gripping a large bottle of cherry seltzer, left hand grasping his "Blue's Clues" radio, his chin turned to the ceiling, giggling and whirling like a heavenly body.
We figured he'd stick with kids' music throughout his life, but at about age 15, he suddenly wanted nothing but "rock a row." Nowadays his choices are eclectic — everything from The Beatles to Foo Fighters — but he's quite emphatic about his particular choice on any given day. Nothing makes me happier than to peek into his room and find him sprawled across his bed, eyes closed, loudly singing along to a rock song like any other teenager.
He can sing on pitch, but lacks the fine motor skills to play piano. But one Christmas my mother bought him a harmonica, and for a few weeks the first thing he did upon waking was pick up the "'monica" and blow a lusty "wheee — heee." After a couple of huffs he'd clap, smile, sway, then turn to us for approval. He soon lost interest; we chalked it up as another failed experiment. But one day months later, Cam rummaged through the kitchen drawer where we kept stray toys and pulled out the harmonica, put it to his lips and blew a loud chord.
"I sound good," he announced.
Just last year he won his school's Talent Show by playing the 'monica' in his own inimitable style. When I heard this news, I puffed up like Foghorn Leghorn. He's my boy, all right!
Reviving Phoenician Culture
I will also end on a positive note, sharing one of those odd, funny moments that so may of us seem to have experienced with our kids.
When Sean was young, maybe about 10, he discovered the Phoenicians. I had bought him a computer game — Age of Empires — that involved "building" ancient civilizations — Athenian, Roman, Yamato, others — through a series of computer gaming moves. Sean played at all of them obsessively but ultimately got caught up with the Phoenicians. And then it really became obsessive. He talked non-stop about the Phoenicians, who they were, where they came from, what they accomplished, and so forth. He played the game incessantly but only the part of the game that dealt with the Phoenicians. He began bringing home picture books and other materials from the school library about the Phoenicians: their history, agriculture, economy — whatever he could find.
One morning, I took him to the dentist to have his teeth cleaned. This was always a tense and emotional thing for Sean, who wasn't comfortable with strangers under any circumstances, but positively hated having strangers put things in his mouth. Our practice was that I would accompany him into the hygienist's office, and sit beside him holding his hand while the hygienist did her thing. On this particular morning, however, Sean was barely paying attention to what was going on around him. He was talking about the Phoenicians. At every possible moment — that is, whenever the hygienist removed her instruments from his mouth — Sean was asking about the Phoenicians: Why were the Phoenicians conquered by the Athenians? What were the major Phoenician trade routes? Did the Phoenicians use iron? What did their money look like? And on it went. I have to admit that I wasn't really paying attention. My mind was elsewhere, thinking about the things one thinks about — the next deadline, an upcoming meeting, a report to write — all the trivia and mental impediments that can fill one's day. But Sean was still firing questions:
"Dad, can you read Phoenician?"
"I want to. I want to learn it."
"I want to know what they said."
"Why did they disappear?"
"Why did Phoenician culture disappear? I don't know, Sean."
"Do you think they will come back?"
"Yeah, maybe. I don't know." He paused. Then:
"Dad, can I ask a question?"
"Do you think I was born to revive Phoenician culture?"
Those were his exact words. I laughed, jolted out of my reveries. The hygienist looked up. What did he say?
He was serious. "Do you think I was?" I had to think about it for a few seconds.
"I don't know, Sean," I said. "I suppose — I suppose it's as good a reason as any for anyone to be born."
Then we were all quiet: Sean, the hygienist, and me. The hygienist went on with her work.
Many years later, I still think about this. I never come up with a lesson or a moral. And Sean has long forgotten his passion for the Phoenicians. But I guess we are still at it — Sean, me, others — trying to figure out who we are, why we were born, and where we belong. I keep working at it, as does Sean. Maybe not the Phoenicians, but some other people, time, place. I hope he knows it when he finds it.
At SDS 2008
My sister, mother and I presented together for the first time at the 2008 Society for Disability Studies meetings. It was also my first conference when I was on the board and had full conference duties, so I was moderating, presenting, and attending board meetings as well as sessions of interest to me, hosting and presenting with mom and Hope. This was really exhausting for all of us but also fun. It was Hope's first experience in a cross-disability scholarly venue. Her absolute favorite were the performances at NYU; she was riveted and very moved by the beauty, humor and raciness of the performances. Hope later published a humorous essay called "Trains and Taxis" about what it was like traveling to and from the conference with mom (who was having terrible back problems in addition to the usual complications of double knee and double hip replacements) in the Fall 2008 AUTCOM Newsletter http://www.autcom.org/pdf/AutcomNLFall2008.pdf (Note: Her name is misspelled there as Hope Black instead of Block). I am hoping they will join me again for SDS 2010 at Temple University.
Not Quite Yet
On the last Friday of our abbreviated vacation, we awoke to the smell of woodsmoke. The winds had died down just as the firefighters contained the last of the Lockheed fire. From our hotel room, the Santa Cruz beach looked completely socked in with fog. Our eyes tearing, we wolfed a hasty breakfast and drove back home in search of clearer skies.
In the car, Isaac voiced his disappointment: "We're not going home! I want to go back to Santa Cruz!" Two years ago — a year even — he would have reacted to this change as he did most others; either with silent acceptance or a raging tantrum, whichever happened to suit. But his depth of understanding and expression have grown tremendously in the past year, so much so that we find ourselves explaining so much more of the world to him. This is what I thought parenting would be like.
Yesterday I took him to Golden Gate Park in the afternoon. He said he wanted to go to "The Blue Playground," so named because the climbing structure is painted a bright royal blue. I searched in vain for parking (this is San Francisco after all), driving up and down the streets and pulling at least one questionable U-turn. Finally I asked Isaac to cross his fingers and hope for a parking space. I glanced in the rearview mirror and saw him squinting at his upstretched fingers, willing them to cross. A moment later, I spied someone getting into a car ahead of us. "Isaac, you did it! There's a space!" "Hooray!" he crowed from the back seat.
When we got to the playground, he grabbed my hand and insisted we walk through the tunnel toward the Japanese Tea Garden. I was a little confused about where he wanted to go, but it was crisp out and there was plenty of sunlight, so I didn't argue. He strode with purpose past the museum, past the Tea Garden and over to the bandshell that is the centerpiece of the park.
Oh yeah, I remembered. The ladies' room.
Back when we were potty training Isaac, he became terrified one day of those automatic flush toilets, which have a tendency to go off at unexpected and unfortunate times. That, plus the eco-conscious addition of hot air hand driers and automatic faucets has made public restrooms a sensory nightmare, which in his own way he is trying to master by seeking out every single restroom he can find. It's become an obsession — his own kind of desensitization therapy — which I both admire for its resourcefulness and worry about for its urgency.
"I'm in the ladies' room!" he exclaims as we walk in, startling an older woman who is washing her hands. "Yes, sweetie, and remember that you are getting to be a big boy, and the ladies' room is for ladies. So what do we have to remember?" "Give people their privacy," he answers immediately, making a beeline for an open stall. I stare down a nine-year-old girl as she rolls her eyes and smirks.
Afterward, we buy a hot pretzel and a bottle of water and take it to a park bench in the plaza. He climbs into my lap and smiles at me, munching happily. He makes up silly rhyming words, and, after a moment, leans in and kisses me sweetly on the cheek.
"Are you ready to go home?" I ask him.
"No," he answers, snuggling closer. "Not quite yet."
And that, in essence, is where we are. Sometimes it's a race to see how far and how fast we can go; sometimes it's a matter of willfully ignoring the more frequent, ignorant comments and social expectations, sometimes it's a freezing fear of what the future will hold, and sometimes it is a kind of bliss I cannot fully express and never anticipated.
Where it will lead, I have no idea.
But am I ready to tell you what it is, what it means, what you can expect, how to think about it?
No. Not quite yet.
I first want to say what a pleasure it has been participating in this discussion and hearing everyone's story and perspective. It reminds me of how profoundly isolated my own family was when they raised my brother and how dramatically this has changed. I often wonder how their lives, our lives, and his own life would be different if more had been known. Our family became quite insular as a result of the misinformation out there, simply as a means of protection (although there were ways this strategy of course backfired). In the past few years, I've become increasingly struck by how hard it would be NOT to be aware of autism. Just driving down Sarnia Street I regularly see billboards proclaiming how often a child is born with autism — one in every one hundred and fifteen births — or notice advertisements on the cable access channel or in the paper for Winona's Autism Spectrum Disorder group. In the 80s, when I told people I had a brother with autism, most people stared at me blankly; some people might say, "How wonderful, I didn't know he painted." I would usually have to explain what autism was. Now, it seems, almost everyone I meet has heard of autism — although the information they may have may not be accurate. There has been an explosion of parent memoirs. Everyone, it seems, has something to say about autism. I think this is one reason why I feel it is so important for us to relate our stories. Writing is a way of entering into the human experience, understanding the self, and, for many, a way to heal. I observe this in my own writing, as I continue to explore my relationship with my brother and my mother's own pain at the hands of the psychiatric profession, and I have observed it countless times in reading memoirs about autism as well as those by people existing outside the mainstream. My notions of what a "self" is have surely been affected by living with a disabled sibling. My own understanding of language and identity grew hand in hand with watching him attempt to construct his. While it may be clichéd, the more I have read, and the more I have written, the more I think I have grown as a sister — from someone who used to feel profound embarrassment at my brother's eccentricities to one who has come to recognize more profoundly the poetry — as well as the pathos — in his life.