Methodically then, not only each night, as Ruffin slept or not, but also during the seven hours of his first day at school, throughout the remainder of August and early September, I lay back on my bed upstairs to plunder all the resources from the back pages of my new sacred texts, my new Bibles, Negotiating the Special Education Maze, Children With Autism: A Parent’s Guide, The Handbook of Autism and Pervasive Developmental Disorders and from my own carefully transcribed notes of my long-distance calls with Sue in Iowa City. In those days before Amazon, I wrote a raft of letters to order all the books mentioned in these sources or by Sue as being more narrowly focused on autism.
Having already found so helpful the B-6 with magnesium vitamin and DMG information in the current issue, I ordered every available back issue of Dr. Bernard Rimland’s Autism Research Review International newsletter then ongoing, and now helpfully archived at https://www.autism.com/arri-newsletter. And his early prize-winning book.
Then, I read all night, every night, and all day — during every hour Ruffin was in school. No longer mindlessly. As I read — skimming first — I threw each arriving book to one side of my bed, or the other. Good books, ones that seemed sound science, to one side. The near side, for re-reading later. Silly books, about how your child just needs our colored lenses, suggestions for sitting on the floor together with your child, playing with his or her feces, if need be, all the quick, complete and apparent miracle cures, to the other, far side. As a waste of money, waste of any more of my time, of Ruffin’s time. It struck me there had been a lot of crap written about autism.
I did not sleep. When
Bedtime came and he banged
His crib and paced all night in there,
Babbling one syllable in his trance,
Happy it seemed to me, but oblivious
(I learned — oblivious), reading stacks
Of books ordered in — in what scrap
Of time — by mail.
Echoing Kanner, Bettelheim opined:
Mute autism is all the child of the family’s
Whose refrigerator mother — nice sound
Bite, that! — stood humming in the kitchen
For such damage done by language
Should Dr. B. not be
Marched out in blindfold?
Sign that he was simple, blind — no,
Enough that he wandered: free to plagiarize
Other subjects — harmless ones,
Old European fairy tales,
On the near side of my bed — there remained a thin scatter — three books I judged worthy of re-reading:
Bernard Rimland, PhD, Navy psychologist, parent of a son, Mark, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, (Century Psychology Series Award, 1962,) still in print, an award-winning classic, still readily available and updated nicely as to all the later science in a Fiftieth Anniversary Edition.
Dorothy Beavers, PhD, chemist, parent of a son, Leo, Autism: Nightmare Without End, (Ashley Books 1981, 1982), long out of print, still available on Alibris.
Catherine Maurice, PhD in French literature, parent of a daughter, Anne-Marie and a son, Michel, Let Me Hear Your Voice, (Knopf, 1993), still in print, still readily available.
All these were authored by observant, intelligent and clearly-loving parents. These, I would re-read mindfully, with highlighters. With my three accustomed colors for trial-preparation–yellow, pink, green — helpful facts, harmful facts, and neutral rules I might need to wield–as relevant to my current case — our Ruffin. That’s it. All the rest — a deep pile on the far side — smelled faintly, or sharply of crap.
So, Bernie, Dorothy and Catherine became my guides and midnight intimates as Ruffin and I continued to make our way. As Jim seemed to wander off. As an experienced parent of two typically-developing children, Jim, and I, as a first-time parent of one with autism, seemed to be driven apart by Ruffin’s strange behaviors for the first time ever in our own decade and more together, as at least an item. It crossed my mind he might have recommitted to his marriage or found someone else to see. This was a problem I couldn’t think of, or do anything about. I knew better than to raise any argument here or over the phone with Jim about where he had disappeared to then for as long as a week or more. I knew Jim loved to run around. Here and there, in and out of everyone else’s business, to auctions, to livestock sales, to exotic animal swaps, to cut grass in cemeteries, to right and repair headstones. He was a fully social creature.
So, I continued to take my solace in reading. It was hard enough for me just to get Ruffin up every morning, dressed, fed, and out of the house. Only then I could I retreat back to my second-story bedroom and read, among the briefly-brilliant leaves of boulevard trees sweeping my windows.
Up there, in the quiet, re-reading Bernie’s early prize-winning book, I came to appreciate how definitively he broke the back of Bruno Bettelheim’s elaborately embroidered Freudian fantasies about autism, tales woven out of Bettelheim’s boundless narcissism which might otherwise have enchanted me. I actually remembered reading the 1968 Time and Life magazine articles about Bettelheim’s book myself, as thirteen-year-old girl, as all too darkly fascinating. Except for these magazines’ come gawk at this car-wreck, and hagiographical articles about Bettelheim, before 1994, autism had been nothing more than an odd word that had left a brief exotic trace across the back of my own restless, reading eye.
Eventually, I ran across the ultimate take-down tell-all biography of Bettelheim–The Creation of Dr. B: A Biography of Bruno Bettelheim (Simon & Schuster, 1997), out of print, but available on Alibris, by journalist Richard Pollak, whose brother with autism had been ill-treated by Bettelheim.
Here with me then was Dorothy writing about how she was plagued in the 1960s by Bettelheim’s intoxicatingly influential ideas when Bettelheim’s 1967 book The Empty Fortress had appeared and as a result her co-workers “suddenly began to exhibit cold, hostile feelings towards me where cooperation and friendship had existed before.” Catherine too, was more than a bit pestered by her French in-laws’ reading “the ever-vigilant and feverish Freudians” as late as 1988.
Both Dorothy and Catherine had come to strong agreement with Bernie regarding the lack of any meaningful help from the self-absorbed heroism of Freudian psychoanalysts of Bettelheim’s school, or their speculations about autism and its origins. How quickly, then, I joined in Bernie’s, Catherine’s and Dorothy’s scorn of the psychoanalytical, both Freudian and post-Freudian. Yes, I thought, here lie real dragons! At the very least, here sits a real toad in our family garden.
I found myself reading much more pragmatically. With Dorothy and Catherine, I found myself far more interested in following Bernie’s careful argument that established autism’s likely neurobiological causes.
Re-reading it carefully, Nightmare Without End by Dorothy Beavers struck me as a salutary story from the 1960s when there was nothing — or not much — to be done about autism, when there was no known cause and no known cure, when autism, then often mistaken for schizophrenia, and its early diagnosis were vanishingly rare. Dorothy had been finally able to sit down to write in 1982, in Rochester, New York, with her son, Leo, sixteen, living in placement, in an expensive, private, residential school in Pennsylvania. But, even in 1994, as I read Dorothy’s story, I found there remained much to take warning of, and much to take comfort from, in her warm, wise, frank and unsparing witness.
Perhaps, as important to me as anything, Dorothy offered me the comfort of knowing that my passing temptation to suicide after doing away with my own child was hardly unique. So I set those thoughts of mine aside then. Confidently. Along with any shame for entertaining them.
But Dorothy also pointed out other signposts of early warning for my own road ahead — here lay more dragons and myths — as well as true pitfalls and long-term personal dangers. Breakdown to avoid if I could, as Dorothy suggested — to avoid becoming a total recluse, as if I were not already one by writerly temperament, bound by the confidences of others I held in my profession and by long-standing personal circumstance — having entered into and chosen to remain in my illicit relationship with Jim for so many years. Before Ruffin was born, I had to admit to myself, the relationship, being a sort of permanent side-piece, had worked for me. No socks to pick up, no hamster-wheel of three daily meals, none of the irritations presented by two sets of unchangeable personal habits, just brief joy, great swathes of time to work, to write and to read, to travel and to publish and to laze or walk. But then, and again, so often in the coming days, I felt a sharp pang of envy for Dorothy’s supportive and loving husband, a fellow chemist at Kodak, even as she herself felt the two of them lived “a fragmented life.” Even as I was forewarned, even about all the easily recognizable pitfalls, none of Dorothy’s well-mapped dragons would prove entirely avoidable.
One solace I knew I shared with Dorothy, “Hard work is excellent therapy for a grief-stricken mind.”
Also, easily recognizable in our Ruffin were the signs and symptoms that Dorothy described in her Leo —aggression, pain insensitivity, initial suspicion of deafness–which helped me put away any temptation to run after a second, dissenting diagnostic opinion.
And, love was present, resonantly, in Dorothy, “But I think in our case the tragedy went even deeper. Leo was our only child and we had waited ten years for him.”
So, love was not enough! Fair warning.
* * *
If a young child’s home environment didn’t cause autism, then what did? In 1994 I was intensely curious, of course. Even today, I remain a curious reader. Can we help but be fascinated by our own children?
Since the mid-1990s, an increasing incidence of diagnoses on the autism spectrum has been reported by the Centers for Disease Control — now one in every fifty-nine young children (more than one in every forty-two boys and more than one in every one hundred and eighty-nine girls). Up explosively from the rare event, and the reported incidence in the literature available to me in the mid-1990s—of Ruffin as the rare one in fifteen-thousand births.
Under pressure from organized parent groups, sometimes with funding raised by parents, given the constraints of government funding for fundamental research, science is beginning to pick up the pace in autism research, into brain research, brain imaging, the sequencing of duplications and deletions in parts of the genome essential to neurological development, into environmental exposures as triggers and into epigenetics–the study of changes in organisms caused by modifications of gene expression rather than alteration of the genetic code itself. Answers are beginning to emerge to Dorothy’s, Catherine’s, Bernie’s, and even my own early questions and speculations.
Current thinking on the cause(s) of autism — which likely varies at varying places along the spectrum of this essentially behavioral syndrome — suggests there may be various genetic susceptibilities, triggered by various epigenetic and/or environmental insults. But none of this research or speculation into causation has helped much yet—certainly not by leading to any easy or effective non-behavioral treatments.
That there might some genetic link was strongly suggested early on by many published twin studies, with which Dorothy was familiar early as 1982, and were consistent with her own early research and solid questions,
“Why is it predominately males, especially first-born males, who are afflicted with autism or severe genetic disorders?
“Also, girls are far less likely to have serious genetic defects than boys — although later they never have all of the advantages that men do in our present (1982) society.”
Given the early reports of transient autism symptoms with heavy metal poisoning, now confirmed by recent findings of high residues in shed baby-teeth, given that Kanner’s and Asperger’s classic papers on autism had their roots in Germany where chemical industries had their birth in the 1940s, I found Dorothy very prescient to be writing in 1982,
“During graduate school I had worked with some very toxic chemicals which twenty-five years later had been shown to cause cancer and birth defects.
“How can psychiatrists ignore the fact that autistic-like conditions can be induced in animals and man by trace amounts of chemicals which have actually been found in the brains, blood and urine of mentally deranged patients?
“Or, by surgical brain lesions? Or viral infections?
“My husband and I know there is a biochemical or neurological defect responsible for causing autistic children to behave as they do.”
Dorothy’s speculations caused me to wonder at the time. Jim was a combat veteran of the Vietnam War, a brown-water Navy man, heavily exposed to Agent Orange sprayed over his swift boat as it traveled widely through the Mekong Delta, ferrying fresh platoons in, ferrying survivors and corpses out. My pregnancy took place in rural Iowa, among corn and soy bean fields of monocrops rendered virtually weed-free by the then-heavy applications of chemical pesticides, running-off into all the little streams, leaching into individual rural wells like my own.
And, as with Dorothy and her husband, both Jim and I were older parents–I at thirty-seven; he, at forty-four. Recent research suggests some small risk of autism with older fathers, as there has long been a known risk of Down syndrome with older mothers.
But, did I have any time, or inclination, to blame either Jim or myself? No, somehow I felt, urgently, we and Ruffin had very little time to get on top of our immediate problems. And, certainly, none to waste on any inclination to blame.
* * *
So I was led by Dorothy’s, Catherine’s and Bernie’s examples to take a deeper dive into the autism treatment and research literature than Ruffin’s pediatrician, his diagnostician, his neurologist, his speech-and-language pathologist, his physical therapist, his occupational therapist, his special education teacher, his one-to-one, or one-to-many teacher’s aide, his audiologist, his vision therapist, his sensory integration therapist, his pediatric special-needs dentist, his school psychologist, and his state autism consultant, because, together with Jim, or not, however that might work out, I was Ruffin’s parent.
Each of these professionals and paraprofessionals would just eventually return Ruffin to us — maybe just to me–in the end. And I knew our public schools would turn Ruffin out into the world at age twenty-one, when his IDEA special education services entitlement would end. Or earlier, at eighteen, should I foolishly consent to his high school graduation at that age.
And, fairly or unfairly, I felt I had no time to waste on uninformed professionals and underpaid non-professionals who might, as in Dorothy’s day, still compound what were our real difficulties with useless outrages.
By now, both common sense, as well as the best published, peer-reviewed scientific psychological research I had read about so far suggested that any treatment for autism with any fair chance of success was bound to take more than one hour a week of any therapy. Here was Dorothy’s experience,
“After one year in therapy [one hour a week of psychoanalysis!] Leo had not progressed beyond the level of an eighteen-month-old baby. Emotionally he was even younger, perhaps twelve months.”
Although, surprisingly enough, it also seemed to take very little time for uninformed or sub-standard treatment to ingrain poor behaviors–which all too quickly became self-rewarding to the child–and then, became very difficult to un-teach or extinguish,
“The doctor did teach Leo one thing, however: to throw objects ‘to relieve his frustrations.’ Until this time Leo had never been destructive in this manner and I doubt if he would be today. But thanks to psychoanalysis, Leo has been permanently saddled with a very destructive habit which serves no useful purpose and has actually hindered his progress.”
Even today, a Medicaid-funded near-minimum wage respite care worker or sitter or teacher or teacher’s aide untrained or unskilled in good behavioral practice might do a young child with autism more harm than good, and might amount to less quality care than Dorothy’s 1960s-era solution of seeking help from the Society for Prevention of Cruelty to Children in order to hire a full-time licensed practical nurse to care for Leo during his first five years while he was able to continue to live at home.
* * *
Throughout this early period, I kept close to my heart Bernie’s and Dorothy’s abiding message of the 1960s,
“It was not the professionals who helped us (it was ourselves, together with other parents).”
In their day, through newspapers, snail mail letters and landlines, it was another autism-parent wrote to pass news of Bernie and his efforts to Dorothy,
“Have you read Dr. Bernard Rimland’s book, Infantile Autism? He has done all of us parents a great service in that he collected the world’s literature on autism and synthesized it with clarity.”
True enough then, and it remained true in 1994 for me throughout our time of need, and on through 2006 the year of Bernie’s death, when Dr. Stephen Edelson and Bernie’s long-time staffer Rebecca McKenney and other organizations such as Dr. Doreen Granpeesheh’s and Shannon Penrod’s CARD Autism TV, fundraising organizations like Autism Speaks, and online daily world-wide research reporting services such as Spectrum shouldered Bernie’s effort and his great legacy.
And, later, as I carefully re-read Dorothy book I realized, here was her tragic, near-miss at effective treatment, possibly just the result of the misspelling of a name in that same earlier parent’s letter to her, a misspelling which must also have escaped Dorothy’s own copy editor.
“Operant conditioning seems to have the most promise in teaching autistic children. Dr. Loovas from UCLA is one of the major proponents of this technique.”
From Schopler’s series of volumes, I knew Lovaas was the correct spelling, Ole Ivar Lovaas, PhD, his full name and true title, his name itself Norwegian, as he was. In a September-October 1994 issue of The Advocate, the newsletter of the Autism Society of America, Dr. Lovaas reflected on his work as a teenaged farm laborer under the Nazi occupation of Norway,
“I first became interested in psychology during the German occupation of Norway — the country where I grew up — during World War II. I was a boy then, and I wondered whether such destructive actions were caused by genetics or by the environment. I hoped for the latter, because that would be easier to change. So you could say that my own childhood environment determined my eventual interest in the behavioral treatment of children with autism.
“Nazi Germany shows us the critical importance of the environment to behavior. Here was the German culture, a culture that had done more to reward art and science than any other European nation, and yet it perpetrated some of the most savage acts of slaughter in history. A normal person can be highly affectionate in one environment, terribly destructive in another.”
Ole Ivar Lovaas had come to the United States first as college undergraduate exchange student to study music, in the 1950s. He had come to Luther College, where, I myself taught creative writing, briefly as an adjunct, to an area where immigrant Norwegians had settled, where Norwegian-Americans still lived, to the home of the Norwegian-American Museum, in Decorah, Iowa, where I had practiced my first ten years as a lawyer, where Norwegian was still spoken in the Social Security Office, and still a twenty short miles from where Ruffin and I lived in Waukon.
Eventually Lovaas had settled into a long and controversial career of psychological laboratory research into autism at the University of California at Los Angeles. Across the country, in New York, Dorothy learned a bit of his work, but had her initial reservations,
“Our first [parent] meeting was to include a movie dealing with the technique of operant conditioning, also called reinforcement therapy or behavior modification.
“But operant conditioning is not a cure-all, unfortunately. It is only one of many promising techniques for helping a nonverbal child begin speaking and communicating.”
Then, recounting her own personal experience, she noted about her Leo,
“He ‘learned’ the words very fast when gumdrops or jelly beans were the reward for getting the right answers.”
Essentially, that was operant conditioning.
By her book’s end, Dorothy offered this wise and generous recommendation for the future, long after her time of immediate need, when, as a practical matter, the full developments of Lovaas’s techniques had never been available in time for Leo,
“Research into educational and behavioral techniques like operant conditioning has demonstrated that even the most ‘hopeless’ child can learn. More teachers must be trained in this field, perhaps in courses sponsored by the federal government.”
The only place Dorothy mentioned where Lovaas’s technique was available in the early 1980s was in California — solely through the agency of Catholic charity.
* * *
Operant conditioning was a phrase I recalled from my own undergraduate days at Reed College and associated with on-campus debates about B.F. Skinner raising his own children in his Skinner boxes.
After a single semester, I had moved out of my noisy Reed College freshman dorm, into the quiet, dark basement of Mrs. Lumpkin’s tidy, suburban, Eastmoreland home. A new widow, she could use the money. I, too, would save quite a bit by giving up my room and board contract on campus — my distant view of Mt. Hood–to rent from her. All my savings from my living allowance could go for new books, from the campus book store — and from the larger Powell’s Books downtown — I had no car, but there was a horribly slow city bus.
Mrs. Lumpkin’s husband had been an accountant, I think. All his things had been moved down to the basement. Where I was. Out of sight. Out of mind. I supposed. Although she seemed sad enough, and sometimes talked about him.
He seemed to have loved fountain pens. He certainly had some beautiful ones. Particularly, a green one, with a striped barrel, in two shades of green. This was the one I chose to steal when I moved home for the summer. This was the one I brought with me, which I considered my own by then — the one I began to write poetry with, when I moved back in the next fall, as her faithful tenant.
Mrs. Lumpkin was a Republican, a strong supporter of President Nixon. She worried for him, and for our country. That fall and winter of 1972-73, I sat and drank a little coffee with her, and listened politely, keeping my own opinions to myself. Reed itself was rife with war protests, which left me nearly-equally uneasy, feeling politely again, I must be on the wrong side of the issue. After all, I had loved writing local soldiers serving in Vietnam all through junior high and high school, offering my self-absorbed support.
The campus protest to close down the Administration Building had been timed to delay the issuance of faculty paychecks, for maximum effect. Still, most of the younger, untenured faculty were in support of the closing. Which did not really last that long, anyway. After a lengthy debate, student-leaders bent to the graduating psychology students’ demand that the protests not disrupt the Skinner-box rat-maze experiments running in the basement. No one wanted to set back behavioral research. About forty percent of the Reed class just ahead of me dropped out to pursue more effective political protest.
That summer, May through August of 1973, I returned to my state boarding school, the School of the Arts in Winston-Salem, to monitor the stained glass studio for summer students, to make a little money, keep a bit of distance from my family, keep a bit of freedom. Cutting glass and soldering soft lead with the windows open to vent the acrid smoke, all summer I listened, fascinated, to the ongoing Senate Watergate hearings. Admiring Sam Ervin, our elephantine Senator. Glimpsing the young women-staffers like Jill Wine and Hillary Rodham who were investigating attorneys. Perhaps ungraciously, I decided to avoid any more of Mrs. Lumpkin.
My last two years at Reed I rented another room the size of a coffin. In an attic, without heat. I slept under, actually wrapped up in my long, second-hand army overcoat. Between two cedar bookshelves, lined with my insulating books. Under an uninsulated cedar roof. Since the college library was open all night, often, whenever it was very cold, or rainy, I sat up late there, drinking coffee. It was a thoroughly civilized library. And, once the infirmary was likely as filled up as it would be for the night with the sick, I could wander over there, and the nurses would take me in if there were still a free bed. The infirmary, too, was thoroughly civilized, had a hot shower, and a large brandy-snifter full of foiled condoms.
* * *
Lovaas’s early research was not without controversy, however, resulting from his early use of aversives. Fearlessly, effectively, and perhaps crudely, at times, and for the most part uncommonly, for patients in extremis, in the late 1950s Lovaas had used electric shock to treat those developmentally disabled children and adults who engaged in extreme self-injury such as eye gouging, ear-drum piercing, and head-banging, and who through such injury ran the greater risks of secondary, and sometimes deadly infections. Such highly-developed self-stimulatory behavior—self-injurious behavior—had put their parents to harder choices than I felt I ever faced, having caught Ruffin’s autism early before these extreme behaviors developed.
Catherine had written about how she and her husband Marc wrestled with the concept of aversives, acknowledging both its value in some cases, and their personal distaste for the practice, and their unwillingness to cross certain lines during treatment to be carried out in their own home,
“Not that we are categorically against aversives . . . .We have heard of some devastating cases where a child’s self-injurious behavior was so severe as to threaten his sight, his hearing, or even his life . . . whose parents finally acquired a device, a helmet that delivered a mild electric shock every time the child attempted to hit himself. The behavior was eradicated in a matter of weeks . . . . Neither one of us liked it . . . . His mother had no doubt she had done the right thing.”
Despite the noise and unpleasantness around this issue of aversives, she and Marc had managed to come to a reasonable treatment decision for their two children,
“Marc and I heard it all, and we heard it constantly: We heard that we were going to create a robot child . . . that behavior modification stopped just short of child abuse . . . the erroneous assumption that every behavioral program systematically uses a whole gamut of horrific aversives — everything from spanking to electric shocks to stun guns. In our home program, however, no therapist ever used any physical aversive. The most restraining thing we did was to keep Anne-Marie in the chair when she would rather have crumpled to the floor, although some people would consider that very aversive indeed.
“After all, the sessions were going to be in our home. Surely we could have some control over what went on under our own roof.”
Aversive practices came to be largely abandoned by Lovaas and later behaviorists as they developed the technique of extinction, a disciplined, and strictly objective practice that attention be given rewardingly by the therapist and/or parents and caregivers when, and only when, a disabled child or adult was — momentarily or accidentally at first–not engaging in self-injury. Undue attention given to an unwanted behavior ran the risk of increasing the occurrence of unwanted behavior. Everything, everything seemed to be a behavior, to be watched, encouraged and rewarded if good, and ignored and extinguished if bad.
In making my own decisions for Ruffin’s treatment, I considered, too, how clear it was that without being able to learn, Dorothy’s Leo remained permanently subject to other, severe risks common to children with untreated autism.
“Unable to learn to use his seat belt, Leo jumped out a moving car.”
“Leo has never learned what danger means… One winter when Leo was away at [his residential] school, I received a call from one of the staff saying that Leo had been hit by a car when crossing the street from the dining hall to his home unit . . . . His shoulder bone had been broken.”
The injury of a disabled child while placed in care — living away from home and from ready parental oversight of necessity–is not an uncommon event, even today.
Dorothy had found it difficult, as I did, as most parents do, to think of disciplining a child with disabilities, whom we may suspect has no real grasp of the concept of punishment, whether intellectually or morally. Still, at desperate junctures, Dorothy herself reported the effective use by herself and her husband of what some might consider aversive practices in parenting Leo–spanking, and cutting off the electricity to his room to put an end to Leo’s staying up all night.
At desperate junctures, in desperate spaces, today’s untrained caregivers, even today’s trained special education teachers and classroom aides continue to engage in what amounts to punishment of the disabled. Unfortunately, in many states, such child abuse by an unsupported teacher or untrained aide is not reportable to the state Department of Human Services, but, remains a matter for in-house discipline, if any, within the school district’s personnel management system, generally an opaque and protected professional bailiwick.
Aversives have no place in the punishment of a child who tantrums disruptively or otherwise misbehaves in school. Time and data need to be taken for thoughtful analysis of the function of the child’s behavior, for a real search for triggers–the immediate environmental precursors to unwanted behavior–can be changed. This sort of change can be hard to secure within educational systems. It is probably easier to achieve at home where changes are within parental control.
And, while the IDEA and other federal and state law now provide that schools must write behavior intervention plans ahead of anticipated times of crisis, hopefully with the assistance of an observant and experienced certified behavior analyst, it remains up to parents to remove their children from inappropriate educational placements, to insist the law be observed, and to enforce it in the courts, if necessary.
* * *
It seemed my own parental urge to read and research past midnight was a common enough reaction. Or affliction. I found Catherine, as she described Marc’s and her own desperate reading after their Anne-Marie’s diagnosis.
“More and more, we read — books, articles, anything that we could get our hands on. By now we knew better than to expect to find some magic cure . . . I raced through texts . . . anecdotal accounts . . . the ‘coping’ books . . . the ‘descriptive’ books . . . all spelled hopelessness and resignation . . . One of the books was entitled Autism, Nightmare Without End.”
So, Catherine, as I had done, had read Dorothy.
“In all the literature [through 1982] there are only a few cases of what Dr. Rimland calls true cases of autism who have recovered almost completely.”
This was not encouraging, but this was why I was reading and searching. I found myself reading Dorothy differently from Catherine, perhaps. In me, Dorothy’s story inspired panic. Appropriate panic.
And, of course, I had the good fortune to have Catherine to read afterward. Catherine laid out a true template for hope in Let Me Hear Your Voice, her engaging, personal and warm 1993 account of the “recovery” of two of her children, a girl and a boy, both, from autism by treatment organized in her home, using intensive, early Applied Behavioral Analysis (ABA) developed by Dr. O. Ivar Lovaas at UCLA, and documented in his 1987 and 1993 scientific peer-reviewed publications.
When I read Catherine’s words,
“Almost half (nine of nineteen) of the children in the experimental [Lovaas] program had achieved “normal cognitive functioning.” . . . the children were now in their teens… they had indeed become indistinguishable from their peers, socially as well as cognitively . . .”
How those words leapt off the page for me!
And Lovaas himself explained his work to the lay reader of Catherine’s book in his Afterword,
“According to our data forty-seven percent of the autistic children we treated before the age of three and a half attained normal intellectual functioning and passed first grade in a normal school by the age of seven. Recent follow-up data, taken when the children we treated averaged thirteen years of age, showed that their treatment gains were maintained and that their cognitive, emotional, and social functioning still appeared normalized.”
Essentially, Lovaas’s 1987 prescription for successful treatment of autism was: One-to-one (one student addressed by a single therapist) direct instruction, forty hours per week for two years between ages two to five years. In practice, one-to-one instruction was delivered by a rotating team of therapists, each working in about forty minute sessions, because providing the instruction itself was exceptionally demanding and rigorous, and required careful data collection while interacting with the child. Of course, of everyone involved, the child ended up working the longest and hardest. Lovaas’s follow-up 1993 published research outcomes for his recovered group looked like the kind of results I was willing to gamble for–normal IQ, mainstream schooling and socially indistinguishable behavior from peers by age thirteen.
* * *
Scientific progress over time ought to play a role in what we expect those drawn to careers of helping young children with autism to know. Dorothy’s 1982 book of nightmare was published five years before Lovaas’s 1987 peer-reviewed publication of the accumulated results of his early years of research–when he finally began to recover very young children with autism. Catherine’s 1993 template of hope was published six years after Lovaas’s seminal publication.
Dorothy wrote fully a dozen years before Lovaas’s 1993 publication of the longitudinal results of his re-investigating and independent third-party re-testing of his first recovered group. Catherine enjoyed the advantage of writing her account just a year before this confirming 1993 follow-up study, with Lovaas himself foreshadowing these long-term results then in press in his Afterword to her book.
Both these books and all Lovaas’s peer-reviewed studies were available to me, as I struggled to make my treatment decisions for Ruffin in 1994.
Throughout the mid-1990s, and especially after the publication of Catherine’s 1993 book, parents like me all around the country and all around the world began trying to mount programs of early intensive applied behavior analysis (ABA) treatment and instruction, with each family making determined, often isolated efforts to translate Lovaas’s published laboratory research into our homes, using Catherine’s model.
These were isolated, fragile family efforts, because special educators or state departments of education were unlikely to read, much less take to heart, peer-reviewed scientific literature written in academia. Surprisingly, to those of us, just naïve parents wandering into these embattled arenas, research psychologists did not publish to school psychologists — the two psychological disciplines and literatures did not communicate with each other — they represented solidly separate silos of discipline and effort.
From 1993 and on into the following decade, controversies about Lovaas shifted to arguments about whether other researchers or behavioral practitioners would ever be able to reproduce Lovaas’s claimed, long-term results. School districts facing parental demands for more effective special education practices in autism, and reckoning up the costs of these parental demands, remained quick to seize upon lack of published replication by other researchers as a reason it would be “inappropriate” for parents to ask public schools to offer a Lovaas program of instruction to their children.
But, by 2005, Lovaas’s results were replicated, and again showed–approximately forty-seven percent of children could achieve normal functioning and go on to succeed in regular education without assistance, forty-three percent could make significant progress but continued to demonstrate language delays, and, sadly, ten percent would make little to no progress.
When the U.S. Surgeon General then issued opinions supportive of early intensive ABA these continued to fall on deaf ears. Professional educators don’t subscribe to the opinions of the U.S. Surgeon General either. Not when they already have their own established literature, customs, best practices, and comfortably-accepted constraints, as well as national organizations of school district defense counsel ready to charge them hundreds of dollars per hour to defend their comfort zones.
Now that the early lack-of-replication argument has become groundless, and the U.S. Surgeon General has weighed in, I firmly believe the time has long since passed for school districts to be making arguments against intensive, early intervention for young children with autism. School districts simply need to get cracking.
It seems to me that future behavioral and educational research into autism ought to be focused on:
- How to reach the ten percent who make little to no progress, or
- On why this may be so, or
- Why this may remain intractable.
- And how, if at all, to distinguish the outcome sub-groups in advance of treatment and intensive special education (essentially a triage function).
As Catherine reported in 1993,
“There seem to be no ‘markers’ indicating which children have the capacity to recover and which do not . . . . Dr. Lovaas had published when our children started therapy show that, at best, only about half the children receiving this kind of therapy at this level of intensity at this young an age reach ‘normal cognitive functioning.’ So much seems to depend on the child’s capacity to respond. So much depends on how severe his condition is, how early he is diagnosed.”
Now, researchers like Dr. Deborah Fein are beginning to survey the peer-reviewed published literature to try to do this.
Although, from a parental perspective, like my own —and even from the public schools’ and state mental health departments’ long-term perspective — whether simply because it would only be humane, or whether strategically focused on addressing the exploding public cost of special education and lifetime care for children with autism who make little progress toward learning and self-sufficiency — why does it not seem “appropriate” to offer each child with a new autism spectrum diagnosis an early, intensive trial intervention to probe for whether a robust or even significantly good response might arise in an individual child?
I believe the reason this does not happen is because it is hard and tedious work to mount an effective, intensive early intervention, and because in the scientific literature, as with legal precedent, if you look long enough from a decided or self-interested position for some support to cite among contending authorities, it is certain there will always be some to find.
All this adds up to a sad commentary on the slow advance of effective autism treatment and advocacy. I believe the greatest challenges to addressing autism continue to remain in translating treatment protocols from behavioral laboratories into family homes, into public schools and into the wider care-giving worlds of group homes, job-coaching and sheltered workshops.
As always, as ever, it falls first to parents to make good, better and best judgments for their children, based upon the accumulating weight of the scientific evidence and of peer-reviewed research.
* * *
More recently, even the aim of ABA Lovaas recovery is being questioned by articulate self-advocates with autism like Michelle Dawson or Ari N’eman, the speaking, writing, communicating advocates of neurodiversity. These new neurodiversity advocates may protest the efforts of anyone–even their loving parents–to repress or mold their burgeoning personalities into any narrowing conception of the normal or the neurotypical. While I firmly believe every recovered and/or able child with any remaining residua of autism needs to learn how to become an effective self-advocate for him or herself, and for their confined and unconfined, unspeaking cohorts, some of this more recent neurodiversity advocacy does strike my ear as a near-echo of the early anti-behaviorists so firmly taken down by Catherine in her Chapter 33,
“Within the framework of this acceptance-respect-understanding approach, behavior modification, which insists precisely on imposing many demands on the child — insists on changing him — is universally despised. Parents who resort to it are castigated as manipulating the child for their own ‘convenience.’”
Though some of the neurodiversity advocacy movement seems wonderfully vibrant and hopeful, I do not see it as terribly helpful to parents at the point of decision, because intensive, early ABA intervention may be ineffective in reaching “recovery” or “best outcome” unless it begins well before sixty months or five years of age
Our Ruffin, at three and a half years old, just diagnosed with autism, without speech or other meaningful communication or critical judgment was unlikely to be able to advise Jim and me how to raise or educate him. How wonderful, if he should grow not only to love us in his childhood years of latency, but also grow in later years to resent us, even break with us, as is typical in adolescence, and go on to establish both distance and independence from us in his adulthood.
* * *
Catherine’s book is now over twenty-five years old and remains a sound template for who find themselves faced with choosing treatment. As Bernie wrote in his Forward,
“Her Chapter 33, a brilliant analysis and expose of the therapeutic field, should be required reading for parents and professionals alike.”
For me, her Chapter 33 stood as a definitive, common sense take-down of the anti-behaviorists,
“Who are these antibehaviorists . . . . they are the proponents of the various psychodynamic approaches: holding therapy, the Option Process, most therapeutic nurseries, and play therapy . . . . I am thinking of one mother who told me: ‘I did behavior modification. I punished my daughter when she acted inappropriately!’ That, I believe, is analogous to claiming to have ‘done’ France because you stayed overnight at Charles De Gaulle Airport.”
The Appendix includes Catherine’s brief descriptions of several available blind alleys I decided to avoid wandering down. About all these largely-worthless and harmful group of fashionable flavor-of-the-month magical-thinking easy autism therapies, I found I agreed with Catherine’s firm judgments of dismissal.
“Moreover, and most distressingly, they encourage parents to focus on the one miracle method, discouraging them from persevering with the hard, relentless, boring, stressful regime of a behavioral approach.”
* * *
Catherine’s extended expose of the therapeutic field was distressing enough to read, much less encounter when seeking out help for Ruffin, but as Bernie advised, and despite the paralyzing effects of first diagnosis, I believed it remained critical for me to try to follow Catherine’s example, to “take an active, aggressive role in seeking and trying the various treatment modalities that others have found helpful.”
Re-reading her book, I came to value Catherine’s pragmatism — her desperate, initial willingness to try a lot of things at once–and then critically judge along the way what seemed to be working for each of her children. Because of her honest assessment of her own experiences with a combination therapy program, in 1994, I was able to choose more wisely and confidently what other available therapies I was willing to combine with a core ABA/Lovaas program without disrupting or endangering what might be its crucial effectiveness.
I took to heart the conclusion of Catherine’s successful experience and her wider acquaintance,
“Again, the only scientifically documented, published study (based on statistical analysis rather than anecdote) that shows any autistic children to have recovered supports intensive behavioral intervention at an early age. Even then, the majority of children do not fully recover. As one father who was running a home program for his son once said to me: ‘There’s maintenance, and then there’s Lovaas. There are holding tanks, and then there’s behavior modification.’”
Sometimes, too, I knew history teaches. So, I highlighted some important treatment and advocacy history in Bernie’s Forward to Catherine’s book,
“I was so impressed with the potential of behavior modification that [in 1965, with O. Ivar Lovaas, PhD] I founded a national parents organization (now the Autism Society of America with nearly two hundred local chapters) in order to bring this approach to public attention quickly and to provide a means for disseminating detailed information about it.”
Again, in his Forward to Catherine’s book, Bernie had singled out Lovaas’s approach as the one of then-greatest promise,
“The one approach which appears to have been most effective in bringing about recovery in the Maurice children is the teaching procedure known as behavior modification . . . . this simple-appearing technique not only helped autistic children, it helped them a lot.”
And it was not without an intriguing precedent in disability education,
“‘It’s amazing,’ Dr. Lovaas told [Bernie]. ‘All these years we’ve known how well it worked for Helen Keller, but no one thought to try it on autistic children.’ . . . Behavior modification did not restore sight and hearing to Helen Keller — her biological handicaps remained with her — but it did permit her to learn the skills she needed to adapt to her environment.”
Catherine and Marc had considered the matter this way, which resonated with me, knowing what I knew about Ruffin’s MRI results,
“Somewhere, somehow, he [Marc] thought, there was neurological damage. But we were helping Anne-Marie to override that damage, or to compensate for it, through external stimulation . . . . Someday someone will figure out what is going on neurologically . . . . I’m convinced that the continuing resistance displayed by some parents toward the idea of a genetic or other organic cause of autism has to do with their despairing conclusion that if it is indeed a biochemical or metabolic disorder, they may as well throw in the towel because there is nothing that can be done about it.”
* * *
And, here I found Catherine, impatient then, as we all were and are for more research,
“I like the fact that people (for example, Eric Courchesne, Ph.D.) are using MRI scans . . . . other people discovered a fragile X chromosome . . . .anything that would bring the cool light of reason and science to bear on all this mystery . . . . I couldn’t wait for the day when we had some more answers. I was surprised as the vehemence in my own voice. I hadn’t realized what a tidal wave of impatience was growing inside me. I was angry.”
Research today — PET and CAT scans show how “recovered” or “best outcome” children’s brains process language differently. But they do speak and process language. Better than not speaking. Better than not understanding what is spoken to them.
* * *
By early September, 1994, I had read enough to hope that Ruffin’s provisional diagnosis of Pervasive Developmental Disorder was encouraging, similar enough to the variably-worded diagnoses for Michel and Anne-Marie Maurice, Catherine and Marc Maurice’s young son and daughter — who recovered. And, by then I shared Bernie’s, Dorothy’s, Catherine’s and Marc’s sense of urgency about letting no time lapse before intensive treatment began. For me reading the 1987 Lovaas article, and reading about it in Catherine’s book, began to meet the appropriate panic inspired by reading Dorothy’s book and buttressed my hope.
This was what I wanted to do!
And, like Catherine, I did not need anyone, not my parents, not Rose, not even Jim, to detour me into any peripheral topics, such as how I might need to take care of myself and give thought my own needs. Or Jim’s. Warned by Dorothy, I believed autism could get to be a serious, lifelong problem for Ruffin and for me and all of us, so I had better get going because I had a lot of work in front of me. And, after reading Bernie, Dorothy, Catherine and Lovaas himself, like Catherine, all my naïve expectations of professional help fell quickly by the wayside.
* * *
But, how was I going do this? Using information in Catherine’s book, I ordered a set of early Lovaas instructional videotapes, and The Me Book, Lovaas own early manual of behavioral treatment. Catherine warned that she and Marc found these particular Lovaas “books and tapes . . . another story. We hated them. We hated the way the children looked, so somber-faced and wooden . . . . We were revolted.” My own reaction was these materials seemed old, and not to contain nearly enough information to translate Lovaas’s academic research results into our home. But they were helpful to me as an emerging behaviorist, and helpful later as I came to recruit my home treatment team.
Later on, as it was published mid-way through Ruffin’s treatment, I was able to order Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals, by Catherine Maurice, Gina Green and Stephen C. Luce from Pro-Ed:
https://www.proedinc.com/Products/7816/behavioral-intervention-for-young-children-with-autism-a-manual-for-parents-and-professionals.asp. Or, as in 1994, from Pro-Ed, 8700 Shoal Creek Boulevard, Austin, TX 78758-6897, Tel. (512) 451-3246, Fax. (512) 451-8542.
At first, Catherine and Marc had admitted to these feelings, “. . . on the face of it, the idea [of Lovaas ABA] was nothing short of appalling to us . . . . images of Pavlov’s dogs, trained seals, rats in mazes.” Early on, too, I found this was a feeling I shared.
This is training our loved and long-awaited child
Like a seal
–better by half, with less than
Half a chance, than the alternatives —
Awful documentaries — worse
Than six-year-old, precocious
A boy with his hands padded in bandages,
Harmlessly battering his helmeted head
Or the unsocial male and female
Teens, seated on a common bench
In summer, oblivious to each other,
In their large, unlovely adult bodies —
Gazes averted from each other,
And from the relentless cameras;
Or the starched-faced toddler
First tracing sun-motes in her palm,
Making an identical gesture — in super-
Imposition — years later —
No change in her behavior, her solitary
Leisure in her thirties, in the quiet or noisy,
Clean or filthy State Hospital —
Court-ordered to be no more of…
Or the young man later busy looping yarn
To hook in canvas, seated on the common sofa
At his group home — the ones there are
So few of.
* * *
After writing the body of her book, Catherine had appended some abbreviated accounts of other ABA delivery and funding models that were beginning to develop in the early 1990s,
“The other recourse (beyond health insurance coverage which Marc and Catherine had used) is to convince the local school district that the child needs this therapy, and that the district should provide it under the EHA (now the IDEA).”
Specifically, Catherine told the story of Grant James who had used a video camera to document his son’s failure in special education and to show the necessary contrast of his son’s success in a home-based Lovaas program in order to make a successful bid for school board funding. Of course, this spoke exactly to my own nagging concerns, and offered a good suggestion toward finding a funding solution for Ruffin. This was particularly true since the Handicapped Infants and Toddlers Program (Part H of the IDEA) had just added “autism” as a specially recognized disability in the 1990 IDEA amendments.
In Catherine’s appendix I also found other good tips in Lynn Adams’ story on how to choose people to train as home behavioral therapists, whom to reach out to within academia, how to find excellent advocacy and legal expertise, and how to begin eventual integration or inclusion of Ruffin with kindergarteners,
“Dr. Lovaas’s clinical supervisor, who would later conduct our workshops, explained the criteria for a therapist . . . should not necessarily be an educational background, but a willingness and ability to learn behavioral methods . . . . We made contact with a professor of psychology at our local community college, and he was very enthusiastic about helping us . . . . our money, even our borrowing power, would soon end . . . . We stood our ground and told the school administrator this (an ECSE with eleven handicapped students served by a teacher) was inappropriate for our child. . . . We located a local advocacy group . . . a great help to us, and all parents should check to see if there is a similar group available in their area . . . . We were offered thirty hours per week of one-to-one behavior modification therapy, two and a half hours per week of speech therapy and structured peer modeling using kindergarten children specially chosen for this program. We also have biweekly meetings to revise and update our child’s program. He is now in the hands of competent, caring professionals, receiving the ‘free and appropriate education’ to which he is entitled.”
* * *
What about the remaining ten percent risk of no recovery when weighed against the high cost of effort? Here Catherine acknowledged, as well, her own deep sadness for families whose children failed to make either meaningful improvement or full recovery, including Lucille Schoales’s story,
“Even though we sacrificed everything we had, we knew it was our only chance . . . . The following year was a financial disaster . . . . When we first moved here [to be close to The Alpine Learning Group, a private ABA provider] we hoped that Mike would recover from autism, but he did not. His deficits in receptive and expressive language are severe . . .”
This story left me to ponder Catherine’s final reflection,
“Although I have encountered much quiet heroism in the world of autism, Lucille Schoales’s story still always moves me to tears.”
On balance, even weighing in the possibility of the worst possible outcome, Catherine’s account heartened me, not only with its double outcomes of recovery for both Anne-Marie and Michel, and all the other brief, appended accounts, but also with the example of her determination to break a pathway through what seemed to me to be a familiar, surrounding wilderness,
“This cry is our old habit of mind. We think we have some control, even as the impassive, impossible truth sits staring malevolently at us. ‘Whether you sink or whether you swim, you will deal with me,’ whispers the voice of catastrophe. ‘Whether you want me or whether you don’t, I am here, forever. You are impotent to change me. I will change you.’”
A great measure of Catherine’s determination came from the support she was able to draw from her strong, Catholic faith, from her settled marriage to an investment banker, from her large extended family, her mother, her three sisters who were lawyers, and their families of husbands and children. Still, I identified strongly with that part of Catherine she described as having “an impatience born of despair . . . a woman like me — intellectually oriented, impatient, competitive, overly sensitive to criticism or disapproval” with zero focus on—“how I was coping. . .” Irreligious as I was, momentarily, now and then, I felt my own isolation in this small Iowa town — keenly — where as a solo legal practitioner, I found myself the keeper of too many confidences and secrets — both those of my clients, and my own.
So, it was not for me to turn God, but to Jack Gilbert’s great poem with its argument, echoed as it was in some of Catherine’s words — written as her Annie-Marie was “difficult to calm or distract . . . one of those times . . . when you just have to hold on until it’s over — [h]old on to the conviction, if not exactly the comfort, that there is undoubtedly greater suffering going on somewhere in the world.” And perhaps I was drawn, too, by Gilbert’s title, with its superficial and ironic nod to my own profession.
A BRIEF FOR THE DEFENSE
Sorrow everywhere. Slaughter everywhere. If babies
are not starving someplace, they are starving
somewhere else. With flies in their nostrils.
But we enjoy our lives because that’s what God wants.
Otherwise the mornings before summer dawn would not
be made so fine. The Bengal tiger would not
be fashioned so miraculously well. The poor women
at the fountain are laughing together between
the suffering they have known and the awfulness
in their future, smiling and laughing while somebody
in the village is very sick. There is laughter
every day in the terrible streets of Calcutta,
and the women laugh in the cages of Bombay.
If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world. To make injustice the only
measure of our attention is to praise the Devil.
If the locomotive of the Lord runs us down,
we should give thanks that the end had magnitude.
We must admit there will be music despite everything.
We stand at the prow again of a small ship
anchored late at night in the tiny port
looking over to the sleeping island: the waterfront
is three shuttered cafés and one naked light burning.
To hear the faint sound of oars in the silence as a rowboat
comes slowly out and then goes back is truly worth
all the years of sorrow that are to come.
* * *
September 1st: I wrote Marcia to return the materials she had provided about whom to contact to establish an estate plan for Ruffin’s long-term, lifetime care as a person with an incurable disability, unlikely to be able ever to handle his own finances or to care for himself after I was gone. This fairly reflected the educators’ expectations for Ruffin, I supposed. Nevertheless, I wrote that Ruffin seemed to love school, and thanked them for all their help and for responding so quickly.
Soberly and methodically, the same day, I had reached the crowning entry in the final back pages of my autism resources: The Catalog of Catalogs. If you had a child with autism in the 1990s, it seemed this was how you shopped when you couldn’t seem to ever get out the door! When you couldn’t get in and out of a store without a meltdown! When you really needed shoe-strings or bottles or new rubber nipples or diaper-pins! Or even a new pair of heels for court! With a full collection of catalogs, everything, I suddenly saw, everything was available by mail-order!
Now, I suppose, it would be online.
In either case, no need to ever leave my house any more than to step out onto the porch.
Perfect! I ordered it, The Catalog of Catalogs. So I could order myself a full collection of mail order catalogs. No, Sears was not enough!
I found myself laughing.
My first deep, unguarded laugh since Ruffin’s diagnosis.
Same day, a busy day, a Thursday, the schools sent me my thin pink carbon copy of Ruffin’s August 25th IEP, less its missing first page. Marcia let me know that Terri Kleinow, the speech and language pathologist Keystone had assigned to deliver speech therapy to Ruffin “had me restate objective three for the expressive language goal. She wanted it to reflect her belief that Ruffin would be using more complex sentence structures than just adjective-noun-verb combinations.”
Of course, this represented a change in Ruffin’s IEP made without prior notice to me as his parent, and without my input, as required by federal law under the IDEA’s procedural rules of due process. But, hey, it raised the educators’ expectations for Ruffin. No harm, no foul. Perhaps. Perhaps, it was just a result of Terri’s misfortunate absence at both our summertime August 1st evaluation and our August 25th IEP meeting.
As for my request for Keystone’s financial contribution toward the cost of the upcoming Autism Clinic at Gundersen, Marcia assured me she was on top of it,
“I wanted you to know that the request for further testing has been sent to Director Pratt. He will review the August 1st staffing report by Keystone evaluators and forward it to Gundersen’s patient coordinator for the Autism Clinic.”
Busy, busy day, for Marcia. As a result of my permission to refer Ruffin, which I gave her readily enough, both over the phone, and by coming in to sign a formal written release of Ruffin’s school records, Marcia sent a handwritten note to Keystone’s local Autism Resource Team member Dorothy McKee, a speech and language pathologist based in Decorah who was part of Sue’s state-wide autism support network,
“Mary Jane White is very open to you observing in Ruffin’s classroom and assisting her with home strategies. She has just received the Lovaas tapes and she would like someone to help her apply those principles. All September looks good for her except September 8th. Here is ECSE Teacher Pat Novak’s class schedule — just give a couple days’ notice. Fridays they will be going to Luther College for swimming and adaptive physical education. Phyllis has the referral form and should be typing it up and giving it to you! Thank you, Marcia.”
Her typed referral form was a bit more cautiously worded for the record,
“Ruffin has a provisional diagnosis of PDD (Pervasive Developmental Disorder). The team wants to ensure that Ruffin’s initial programming is meeting his social and expressive language needs. Ruffin attends an ECSE class five days a week. Parent is very involved and interested in learning more about Autism/PDD. The mother would like assistance applying some of the language/play strategies she has been reading about. Please meet with the mother and classroom teacher. Transitions to and from community settings have been difficult. Can the Autism Resource Team assist with addressing these issues?”
No mention, of course, of any receptive language concerns, since the educators had left that matter unaddressed in Ruffin’s IEP. No concern expressed that Ruffin failed to fall within the autism spectrum. And, of course, “language/play strategies” was hardly an accurate description of the intensive Lovaas intervention I had been reading about, and which Marcia mentioned explicitly in her handwritten note–Lovaas–which it seemed she knew very well how to spell, perhaps unremarkably, since she herself was of Norwegian ancestry.
In our home-school notebook, I brought Pat up to date on what Marcia and I had been up to, and, I brought her up to date on my own recent activity, my reading and thinking,
“I have a set of Lovaas videotapes which show behavior modification trials for preschool children with autism learning to attend, speak loud, learn colors, shapes, pretend and converse. It took me about two hours to view the entire set.
“Catherine Maurice, a mother of two children with autism used these methods with her children when they were two, three and four years old. They are recovered, and were much more withdrawn than Ruffin is to begin with. They are in regular classes now, and no longer ‘test’ as having ‘autism.’ I have her book, Let Me Hear Your Voice, 359 pages.
“Marcia seems to be familiar with Lovaas’s name. Perhaps you are too? I’ve seen his name repeatedly in the literature. Perhaps it is legit? Do you have an opinion?”
Pat offered back,
“I’ve heard the name Lovaas but have not read much. I’d be interested in your videotapes and books. Not much time right now but things should settle soon.”
Undeterred, and perhaps unsympathetically to the demands she faced in organizing a new classroom, I continued to press,
“Please let me know when you all are ready for the Lovaas tapes. I’ll bring them over. I can pick up some things from you for more ideas. Do you know where I can get or borrow some photographs of emotional faces?”
And, I continued to report to Pat nearly every word Ruffin spoke and every triggering context,
“P.S. Walking out of Joyce’s house, Ruffin said ‘square,’ but didn’t point or indicate why he said that. There was a square or nearly square window in the house across the street. He has been using squares in his computer program Millie’s Math House to build Mouse houses, and we have been playing with colored squares of paper. I looked at the house and asked, ‘House?’ Ruffin replied, ‘Square house.’ I still don’t know exactly what his meaning was.”
September 2nd, fifty-three days after Ruffin’s diagnosis, I wrote Marcia and Lois again, carefully and deliberately, not just to share what I had observed of Ruffin, or what I knew of his autism, or of what I knew about autism in general, but what I knew by then and firmly believed should be his appropriate education, including “support therapy” and “related services” (a completely open-ended federal law category, unique to each student). Later on our administrative law judge (ALJ), Dr. Susan Etscheidt found my letter significant.
A letter from the appellant to Ms. Boberg [Marcia] and Ms. Henry [Lois] dated September 2nd, 1994 began a series of correspondence concerning treatment approaches and methodology for Ruffin.
My letter opened the subject of considering Lovaas’s methods for Ruffin,
“Marcia, I will really be looking forward to a home visit/classroom visit from someone with the Autism Resource Team.
“I would particularly like to know that person’s opinion of the Lovaas method as described in The Me Book and accompanying videotapes. I have a copy of the five available videotapes here at my house. Short description of tapes enclosed (total time, about two hours).
“I would like to see this method tried with Ruffin. See the enclosed article ‘Current Practices in Early Intervention for Children with Autism,’ from Preschool Issues in Autism, edited Schopler (1993) which addresses the comparative success of this method.
“Even the Schopler group in North Carolina (TEACCH) which criticized Lovaas’s selection of only “high functioning” children to participate, acknowledges that his success rate (forty-seven percent of children so treated are in regular classes by first grade) is probably due to the very high level intensity of pre-school training. Certainly, it is very intense.
“The method is on a behavioral model of discrete, repeated trials and very structured opportunities for expanding functional play, symbolic play, recognition of emotions and extended conversations.
“I have also just finished reading two books by parents who made use of the Lovaas methods. One is Catherine Maurice’s Let Me Hear Your Voice. She educated both her autistic son and daughter by these methods when they were preschoolers. They are now in ‘typical’ classrooms, and are recovered.”
But not only for our Ruffin. There were other students with autism whom I had in mind as I wrote to Marcia, whose exceptional parents in our support group had by then become my friends. These children were a bit older, but could still benefit. So, I also wrote,
“The other book is Clara Park’s The Seige. Although her daughter is not fully recovered, she is a joy to live with, and not a trial, and even though she was functioning at a rather high level before this type of [Lovaas] training, she greatly improved, however, after beginning the training at age fifteen.”
My letter rocketed by fax up to Tom in Decorah with cover notes from Marcia and Lois expressing their rather widely differing personal reactions,
“Tom, If you haven’t seen this you might want to read it. What is the status of Part C funding? Marcia. P.S. Dorothy McKee of the Autism Resource Team is going to Waukon this Thursday to visit Ruffin’s classroom.”
Helpful. Professional. Neutral.
Lois to Tom,
Unprofessional. A bit snarky.
By the following Wednesday, September 7th, Tom had faxed my letter up beyond his own pay-grade to Mr. Pratt and “Moe” in Elkader with his own covering comment,
“Here is the letter we just talked about on the phone.”
Choosing to attach Lois’s copy to him with her comment,
END OF CHAPTER 4
Mary Jane White is a retired trial lawyer who also holds a MFA Iowa Writers’ Workshop, and has been awarded two NEA Fellowships, one in poetry and one in translation. Her Tsvetaeva translations appear along with early original poems in Starry Sky to Starry Sky (Holy Cow! Press 1988) New Year’s, an elegy for Rilke (Adastra Press 2007); Poets Translate Poets, (Syracuse 2013). After Russia: Poems of an Emigrant: After Russia, Poem of the Hill, Poem of the End and New Year’s (a bilingual text) is forthcoming in 2020 from Adelaide Books (NYC/Lisbon). Contact her at firstname.lastname@example.org. This is Chapter 4 of a memoir that won the Les Standiford Fellowship for the Writers in Paradise Conference, Eckerd College, Florida, for a workshop with Ann Hood.