David Holmes' newly-published "Autism Through the Lifespan: The Eden Model" may inadvertently provide just such an inoculation to the closely-related infections of "continuum models" and "aversives." In arguing for the virtues of both, it provides a dose of the live virus as cultured by the "Eden Family of Services" in New Jersey. Yet this dose is so sleekly packaged in so transparent a delivery system as to allow human brain cells to quickly recognize and reject its simple structure, hopefully before it can replicate. Since the structure of these twin infections has never been known to evolve, an immunity once achieved should provide safety for a lifetime.
The continuum model of service delivery reached epidemic proportions just over two decades ago, during the period in which Eden was created. As chronicled by Colleen Wieck and Jeff Strully, "In the 1970s, several national leaders had a set of overheads depicting the ideal continuum. The diagrams contained a set of boxes drawn along a line from margin to margin. Big boxes represented large-size programs, often reserved for people with the most severe disabilities, while small boxes were less restrictive and served people with mild handicaps. The key to understanding the continuum is that people had to move through the series of buildings or boxes in order to become independent or more independent. Movement depended on earning through learning developmental tasks, achievement tasks, and graduation to the next level." (1991, p. 229)
Of course, movement was slow to nonexistent, "setback" meant "sent back," and most people spent their days in remedial mode, getting ready to get ready for a life that was always one more box away. People with the least severe disabilities "earned" the best that the system had to offer, and had the greatest likelihood of success; people with the most needs "earned" the least, and for them "inclusion" remained an unrealizeable dream.
This situation remains the same at Eden today: "More often than not, Eden serves those who have been diagnosed as functioning in the lowest range of cognitive ability." (p. 18). Many of these people "... will require continuing support to acquire skills such as independence in toileting, dressing, or completing one-step directions." (p. 20). It is safe to assume that those on a lifetime dressing program will never make it to a home of their own and a chance to control their services, although many individuals with autism and other disabilities who need physical support and attendant care already do so successfully. It is also safe to assume that, during their school years, such students will not be included: "...a student may need to remain in a special-ized environment to, for example, build social skills or gain adequate self-esteem." (p. 85). Since it is difficult for a roomful of children lacking social skills and self-esteem to assist each other in acquiring them, this level of the continuum tends to move at the speed of molasses in January.
Finally, and with great logical consistency, the continuum model tends to extend its vision of a world in which people forever get ready but never arrive, to encompass the "outside" world as well. "Autism through the Lifespan" assures us that "...the regular education system is not ready to handle the challenges the majority of students with autism present." (p. 85). Regular education teachers "do not yet understand how to address the needs of students with disabilities in their regular classrooms" and "often do not have the time to learn teaching methods specifically for the students with disabilities in their classrooms" p. 85). Only if our schools were held to "continuum" standards would it make sense that 23 years after the passage of the Federal right to education law, they are still not "ready" to implement it.
"As If" is the telling heading of a crucial section of "Autism through the Lifespan." The proposition is that the person with autism must be "treated as if he is a respected member of society" (p. 36). How many of us would be content to be treated "as if" we were respected, "as if" by some stretch of the imagination? But this principle has the practical effect of allowing Eden staff to treat each person with autism "as if" he were responsible for and could control all his actions, or "as if" she could pick and choose among the typical array of choices offered to all respected members of society. "For example," the book explains, "if a person is treated as if he is capable of sitting quietly at the table while food is being served, even though, because he is hungry and agitated, he upsets the table sending plates and utensils everywhere, he must expect to clean up the mess himself. He will now have to wait for his food while he helps clean the area and put the table straight again, and wait until everyone is again seated quietly before he is served. Treating him just as any typical person would be treated teaches him that his actions have consequences, and that he is responsible for what he does." (p. 37).
Of course "typical people" do not live in a service continuum, nor do they have a behavior plan enforced by hired staff who have been taught that their decision-making role "could be described as `playing God' with the person's life" (p. 41). Typical people may in fact have the opportunity to get a snack between meals and not arrive at the table so overwhelmingly hungry. They may have the opportunity to eat alone, or with whomever they choose, when they choose. They may have opportu-nities to communicate the source of their agitation and control over resolving it. If a typical person accidentally knocks something over, or one day acquires a head injury or other condition that causes out-of-control body movements, they do not expect those around them to respond "as if" their behavior was deliberately intended to offend.
The Eden philosophy of "as if" presumes that people with autism find it typical to live in atypical controlled settings, and that they will benefit from paying what staff consider a typical price for atypical activities that may result from typical and inadvertent clumsiness, atypical lack of communication accommodations and opportunities, or an atypical neurological condition that sometimes removes bodily responses from the direct motivational control of the brain. Clearly it takes trained experts to act "as if" this makes sense.
Once the continuum virus attacks the logic circuits, it usually doesn't take long for a service system to succumb to an infestation of aversives -- also known, in continuum-speak, as "a full-range approach to treatment" (p. 120). At Eden, "Aversive interventions are used in all cases to modify behavior that would otherwise be detrimental to the student's health or safety and a deterrent to continuous progress of the student, thereby limiting his social and personal options." (p. 123)
Perhaps to stimulate creativity in the consideration of aversives, "Autism Through the Lifespan" lists and describes 21 different possibilities. Among them are "a visual screen or blindfold; useful for visual self-stimulation behaviors, such as finger-playing or looking at a light"; "negative practice overcorrection -- practicing an unacceptable behavior over and over; used especially in speech and language programs to help students gain control over spontaneous verbalizations"; "moderate contingent exercise -- used mainly for aggression; for example, doing sit-ups, push-ups, or walking on a treadmill or stairs"; "moderate to severe aversive conditioner -- in general order of severity these are: a lip tap, finger or hand squeeze, neck prompt, hair tug, hand or leg slap, noxious oral stimulus, water spray, cheek flick, rubber band snap, upper arm or cheek squeeze, tepid shower, or ammonia inhal-ant"; and "mechanical restraint" of wrists and/or ankles (pp. 124-126). These interventions, the book insists, are used only when Eden staff are certain there are "no medical or environmental indica-tions" for a behavior (p. 131). An example is given of Jeffrey, "a relatively advanced child" with "some very serious disruptive behavior": "He will run away, throw things, or be aggressive to escape from a situation that he does not like. He loves causing a commotion." (p. 131). It is difficult to imagine that no Positive Behavior Supports in the form of environmental modifications, accommodations for sensorimotor differences, and listening to and supporting Jeffrey's communication, could possibly help this child, yet an aggressive program of hand squeezes, leg slaps, and hair tugs could effectively convey to him a reason not to be aggressive.
"Autism through the Lifespan" cites a number of advocacy organizations which supposedly support the use of aversives, but much of this information is disingenuous. The Autism Society of America (ASA) has indeed "rescinded an earlier statement critical of aversives" (p. 121), yet Eden Director David Holmes, as co-chair of the ASA's Professional Advisory Board, can certainly be expected to have influenced its public stance. The ASA currently subscribes to a somewhat ambi-guous statement that "Abusive treatment is never a choice." (Aversives proponents deny that such treatment constitutes abuse.) Similarly the International Association for the Right to Effective Treatment (IARET), which clearly favors aversives, is not an entirely separate organi-zation which just happens to agree with the Eden philosophy: IARET newsletter editor and Board Member Peter Gerhardt is Eden's Director of Employment Services. It also needs to be said that the National Institutes of Health (NIH) did NOT endorse aversives in 1989. In that year the NIH declined to publicly release under its auspices the results of a badly-skewed and tainted "consensus conference" in which pro-aversive "experts" had aired their views.
Most pernicious of all is the implication that people with autism have chosen to be served in this way. "Eden's philosophy of treatment," we are assured, "is reflected in the way in which the people with autism it serves are referred. It first avoids the term `client.'...Faculty and staff at Eden prefer the term `participant.' Participant implies that the person is a partner -- an active partner -- in the teaching process. A participant is a respected partner with everyone involved in the educational process." (p. 34).
It is difficult to imagine a "participant" choosing to spend his days in remediation, or a respectful relationship in which one "partner" controls the other through aversives. Where, readers might ask, is the chapter of this book in which "participants" with autism share their views, and what efforts are made to hear and honor their words? The promising support strategy of facilitated communication has been rejected by Eden; to justify this decision, "Autism through the Lifespan" approvingly showcases quotes from the 1993 "Frontline: Prisoners of Silence" (p. 87).
Similarly the O.D. Heck study, which claimed to have "proved" that facilitated messages originated with staff at that facility, is used to suggest that Eden staff have been spared a similar demoralizing experience (p. 88). Even if FC does work with a few people, the book finally argues, it is not really a "treatment" since it does not improve "socially accepted behavior or work skills." (p. 75). In the narrow logic of Eden's closed environment, communi-cation only has value as yet another tool to evoke compliance.
"Compliance" is the very core of the out-of-date teaching methodologies employed in Eden's educational program. While researchers such as Dr. Stanley Greenspan and his colleagues at the National Center for Infants, Toddlers, and Families emphasize the developmental appropriateness of responding first to the emotional and interactional growth of the young child with relationship difficulties (1992), Eden subscribes to the decades-old behavioral agenda of getting the child to "sit quietly in a chair, attend to a teacher, imitate, or take care of basic needs such as toileting and feeding" (p. 99).
Ivar Lovaas' "The Me Book" (1980) is repeatedly mentioned and quoted, and discrete trial teaching is treated as the gold standard of educational methodology. There is a particularly excruciating two-page description of a discrete trial session in which a young student is placed face to face with his teacher, who carries a set of flashcards and a clipboard for data-recording. The object of the session is apparently to have the student identify the flash card picture of a child jumping, which he correctly does at once. The teacher then continues to re-show the jumping card with other pictures, lifting the child's head by the chin and asking him again to identify it, while repeating the refrain "Look, touch jumping!" and "Good touching jumping!" (How long has it been since the average person has "touched jumping? And what would the average sensory integration therapist say about learning this identification via flashcards?)
The child begins to fidget and leave the chair. He grabs the cards. He is repeatedly returned to task and spurred on by rewards of soda and candy. By trial number 10 he has racked up only a 40% accuracy rate, and the book assures us that he must return to this lesson "every day until his rate of correct responding increases to 90% or better. When he is able to indicate jumping with 90% accu-racy across three consecutive days, his teacher will teach him a second action." (p. 109). By calculations involving a state-of-the-art computer, this reviewer has been able to ascertain that the child will be approximately 1012 years of age before he obtains a useful knowledge base by this method.
Behind the walls of this primordial paradise, Eden's inhabitants seem unaware that even the behavioral world has moved on. A growing body of data is now strongly confirming the developmental importance of teaching children with autism in natural, full-inclusion environments among typically-developing peers, as well as underscoring the value of friendships in children's lives. For example, in "Teaching Children with Autism: Strategies for Initi-ating Positive Interactions and Improving Learning Opportunities" (1995), editors Robert and Lynn Koegel and their colleagues present convincing data to demonstrate that children learn communication skills best in a natural language environment where teachers follow their lead, engage the children in play, let the children choose favorite materials and topics of interest, and where rewards are natural and part of the activity at hand. In contrast, children taught by the "analog framework" (i.e. discrete trial) are far less motivated to learn and, not surprisingly, engage in far more disruptive behaviors than those being taught in a natural language environment. Such children exhibit a "general lack of sponta-neity in their use of newly acquired language skills," and the con-trolled, repetitive teaching practice "might have actually retarded the efforts to achieve generalized communication effects" (p. 23).
Discrete trial is not the only teaching method cultivated at Eden, but it clearly dominates the landscape. Within this narrow ecology, other well-known teaching methods have been forced to evolve in oddly attenuated ways: the names are recognizable, but they bear little resemblance to the more robust species with which most of us are familiar. For example, "play therapy" (more commonly called "floor time") is correctly identified with the work of Dr. Stanley Greenspan and his colleagues. It is also correctly described as "based on the premise that children with autism withdraw from society because of an innate dysfunction in processing sensory information." So far so good, but this premise is then contrasted with the Eden canon that withdrawal on the part of children with autism is "a learned response to their environment" (p. 69). Could one not learn this response because of sensory processing problems -- and if not, why would a child learn it? Apparently for no apparent reason, and so Eden is content to respond on the same terms, rejecting "play therapy" and its theoretical basis for helping the child make emotional sense of play interactions in favor of simply inculcating a "learned response" to the play environment. Here "preschool-age students are taught to play in order to interact with their family and peers" and "students are systematically taught to use toys appropriately." (p. 69). (Parents of typically-developing children may note at this point how many of their children's toys were ever used in the "appropriate" ways that manufacturers, parents, or teachers intended.)
Sensory integrative (SI) therapy is also of little interest to Eden, where its use is mainly confined to adaptive physical education programs. Proponents of sensory integration understand it to be a fundamental way of supporting the child in learning how to learn, since mind and body are one and learning takes root through meaningful sensorimotor experiences. However, at the Eden where children learn to play rather than play to learn, the rationale for SI therapy is also backwards: Rather than viewing sensory integration as a way of helping the child attune mind and body so that the world can be experienced in an integrated way, Eden conceives of SI fundamentally as desensiti-zation of the child's body (i.e. overcoming "tactile defensive-ness") until "learning-interfering, behavioral reactions" no longer hamper the staff's job of training the child's mind in the discrete steps required to demonstrate "functional skills" (p. 70). (E.g. Children will "Touch jumping!" rather than actually jumping.)
Another well-known and powerful approach, incidental teaching, is also pruned to an unrecognizable shape. Incidental teaching is a process-oriented method for teaching children to respond with flexibility in natural settings; it involves actively and interactively building on children's spontaneous interests and responses as these develop within a learning situation. Yet at Eden the only conceivable spontaneity seems to be in the form of misbehavior: "Incidental teaching opportunities not only help encourage acceptable behavior, but also discourage unacceptable behavior. Although unacceptable behavior, such as tantrums, can be predicted in certain situations, as a rule it is exhibited spontaneously by the student. Unacceptable behavior may occur more when the student finds something frustrating or distasteful, but the student's tantrum in not planned. It arises spontaneously from the student's frustration. Programs to decrease the unacceptable behavior, then, are activated when the behavior occurs, and so are incidental in nature." (pp. 114-115).
Any reader who is taken aback by the insular, programmatic nature of these services perhaps ought to skip first to the final chapter of the book, "Eden's Model for Running a Service Delivery Organization." Here an organizational chart worthy of the Fortune 500 details the positions and powers of no less than four Boards of Trustees, two Steering Committees, five Senior Vice Presidents, ten Standing Committees, and an army of Administrators, Directors, Assistant Directors, Associate Directors, Coordinators, Specialists, Managers, Therapists, Assistants, Workers, Aides, and Consultants, all ultimately answering to the President and Executive Director. With major business support enlisted through more than 10 annual fundraising events, Eden has been able to purchase 17 facilities and 40 vehicles. Here indeed is a carefully-managed corporate entity offering continuity and job satisfaction to employees and significant fuel to the local economy. But a corporation, whatever its name, is neither a "family" nor a community.
Working in, or fundraising for, a corporation is different from living in one, and the world of those who own or protect a particular ecological or economic niche has no necessary relation to the world of those who inhabit it. "The Wall Street community," the final chapter of "Autism through the Lifespan" states proudly, "has been exceptionally generous in its support of Eden over the years -- the men and women who participate in the Eden Invitational represent many of Wall Street's leading financial firms. In the third week of May each year, their support of Eden's cause is combined with a premier golf outing and a wondrous day of sociability." (p. 299). Presumably this outing occurs whether or not these Wall Street donors have earned the privilege by eschewing all acts of "aggression," "audible contact by hands or body parts with objects, surfaces, or other individuals in that environment," "tantrumous behavior" such as "agitated running of fingers through hair," "vocalizations which are not words, including television theme songs," or "Leaving of Seat or Area defined as leaving of seat or area without requesting to do so, including not proceeding directly to a designated area" (sample "Individual Habilita-tion Program Goal Summary Sheet," p. 350-351). After all, they are living in a world of green grass, not Bateson's "ecology of weeds."
As Wieck and Strully have suggested, "Picture a world where people with all types of labels are truly connected with people who do not have labels. Visualize and dream about a world that is not overregulated, overprofessional-ized, overserviced, and overbuilt." And then may a "wondrous day of sociability" be had by ALL.
References
Bateson, G. Steps to an Ecology of Mind (1972). NY: Chandler Publishing
Greenspan, S. (1992). "Reconsidering the Diagnosis and Treatment of Very Young Children with Autistic Spectrum or Pervasive Developmental Disorder," Zero to Three, Vol 13., No. 2, 1-9.
Koegel, R. L. and Koegel, L.K. eds. (1995). Teaching Children with Autism. Balto.: Brookes Publishing.
Wieck, C. and Strully, J. (1991). "What's Wrong with the Continuum?", Critical Issues in the Lives of People with Severe Disabilities, ed. Luanna Meyer et. al.. Balto.: Brookes Publishing.