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The Communicator - Autcom's Newsletter

Summer 1998

IN MEMORIAM
Herb Lovett, PhD
1949-1998
First President of the Autism National Committee

This issue of The Communicator is dedicated to the memory of Dr. Herb Lovett. In it we have endeavored to cover many of the issues to which his life was devoted:

  • Learning by listening to people with autism
  • Supporting and accommodating all people to live where they choose
  • Helping children to learn and grow in inclusive schools
  • Exposing the human rights abuses of aversives and segregation
  • Recognizing that all people carry with them a history, and that people who have been misunderstood and abused may be coping with symptoms of post-traumatic stress
  • Understanding the role of sensory and movement differences, mood disorders, and other neurological conditions, in the development of challenging behaviors, and supporting respectful research in these areas
  • Appreciating the uniqueness and celebrating the potential of each person's life.

Our 6th Annual Conference, THE HUMAN TOUCH, will celebrate Dr. Lovett's work.

UPCOMING EVENTS

The Autism National Committee announces its 6th Annual Conference
Co-sponsored by Autism Support and Advocacy in Pennsylvania (ASAP)

THE HUMAN TOUCH
New Voices and Real Choices for People with Autism/PDD
A conference dedicated to the legacy of Dr. Herb Lovett

October 16-17, 1998 (Fri.- Sat.)
Valley Forge Sheraton Conference Center, Valley Forge, Pennsylvania

Keynote Speakers will include:
ALAN FOGEL, PHD -- Univ. of Utah, Dept of Psychology
"Developing Through Relationships: Self, Culture, and Communication"

DOUGLAS BIKLEN, PHD -- Syracuse Univ., Director of the Facilitated Communication Institute and the Inclusive Education Program
"Facilitated Communication: The State of the Art, the Controversy, and the Future"

JUDITH DUCHAN, PHD -- SUNY at Buffalo, Chair of Speech and Language Dept.
"The Origins of Language in Human Development:
Implications for Access to Communication and Alternative Approaches"

Workshops will cover the following topics:

  • People with autism, their friends and families speak out on real issues
  • Living in the community: A right, not a privilege!
  • Behaviorism revisited: Is this any good? How do we know? Where do we go from here?
  • Positive approaches to challenging behaviors; creative growth through relationships
  • Communication, communication, communication: Taking a look from all perspectives!
  • The IDEA and what it means for our children
  • Family-based approaches to joyous early intervention experiences
  • Strategies within regular education for building supportive friendships
  • Middle school and high school inclusion, with help from teachers and others on the front lines
  • Research updates on what is happening in autism

Registration Fees (includes lunches):
Professionals: $175
Family members: $150 (group discounts for more than three people)
People with autism (and up to two support people): $80 per person
Full-time students: $100
Discounts for AUTCOM and ASAP members.
A limited amount of scholarship assistance will be available.

Hotel rooms: $105 a night for single, double, triple, or quad.

BROCHURES WILL BE MAILED TO AUTCOM MEMBERS IN EARLY SUMMER. If you are not a member, contact AUTCOM at 635 Ardmore Avenue, Ardmore, PA 19003 to be placed on the conference mailing list.

The 1998 NE Regional Conference
AUTISM: MANY NAMES, MANY FACES
Dedicated to the memory of Herb Lovett, PhD

October 24 (Sat.)
Cromwell, CT (Radisson Hotel)
For further information, please call Linda Flowers at 860-521-8507.

LEGISLATIVE UPDATES

MiCASA (HR 2020): Medicaid Community Attendant Services Act
"Now is the time for CHOICE, CONTROL, and FAIR PLAY!"
By Kris Copeland, Livonia, Michigan

MiCASA (the Medicaid Community Attendant Services Act), by removing the institutional bias in current Medicaid funding, will give people the choice to use Medicaid monies to purchase personal support services provided in their own homes and communities. MiCASA defines attendant services as "any action to assist a person with mental and/or physical disability in accomplishing activities of daily living (ADL), instrumental activities of daily living (IADL) and health related tasks. These include but are not limited to: personal care services, mobility services and health-related tasks." What could be more fair than that? MiCASA will require that all states develop longterm care services and will create a new mandatory Medicaid service, "Qualified Community Based Attendant Services." MiCASA will not affect existing programs or waivers.

This bill, which looks so obvious and necessary, is being strongly attacked by the Voice of the Retarded, a national advocacy organization representing the voices of parents who wish their sons and daughters to remain institutionalized, and the voices of the unions which run these facilities. They have money, a professional lobbying firm, and very loud voices to tell our legislators to take the easy way out by doing nothing. Although the VOR's interests are not directly threatened by MiCASA, this organization chooses to see any threat to the status quo, and especially any changes promoting consumer (rather than parent and union) control of Medicaid monies as ultimately a threat to its interests. This effort to halt passage of MiCASA must be strongly countered.

Remind yourself and your friends of this fact: the scope and flexibility of Medicaid funding is not an issue of interest ONLY to people who are poor, elderly or disabled, and presently eligible for placement in an ICF/MR facility (nursing home, institution, group home). Most of us will require support at some point in our lives. Most of us are now putting money into a system which will not support our choice or control.

Introduced by ADAPT (Americans Disabled for Attendant Programs Today) and co-sponsored by House Speaker Newt Gingrich (R-GA) and Rep. Dick Gephardt (D-MO), MiCASA (HR 2020) provides definitions for eligibility, addresses accountability, expands upon the list of services and tasks now available under Medicaid, establishes funding and quality control measures and, most importantly, puts the focus on the needs and desires of the people actually receiving the services.

If it matters to you where and how you or your family members will live -- and how your tax dollars are spent -- contact your legislators now with your personal testimony. You won't have to dig too deep to come up with examples of people with autism who have been failed, left behind or utterly destroyed by systemic impediments to individualized supports and services in settings of their choice. Virtually all positive examples of successful living arrangements for people with autism and other disabilities include a high degree of control by the individual to choose the sort of services they want, delivered by people they choose to employ. So whether you are thinking about yourself, your neighbor, your grandmother or your son or daughter with a disability, MiCASA is the way to go! At last, the money will be allowed to follow the person; no longer will the person be forced to follow the money, typically into a nursing home or other institution.

Share your experience and urge your legislators to hold field hearings on MiCASA (HR 2020). In addition to your local legislators, contact:

Rep. Newt Gingrich
Speaker of the House
Capitol Building, H-232
Washington, DC 20515
TEL 202-225-0600
FAX 202-225-7733
Rep. Richard Gephardt
House Minority Leader
Capitol Building, H-204
TEL 202-225-0100
FAX 202-225-4085

Rep. Tom Bliley
House Commerce Chair
2409 Rayburn Building
Washington, D.C. 20515
TEL 202-225-5755
FAX 202-225-1919

Rep. Michael Bilirakis
House Commerce Subcommittee Chair
2369 Rayburn Bldg.
Washington, D.C. 20515
TEL 202-225-5755
FAX 202-225-4085

CONGRESSIONAL SWITCHBOARD: 1-800-962-3542

For more information on MiCASA contact:
ADAPT
1339 Lamar Square Drive #101
Austin, TX 78704
E-mail: adapt@adapt.org

You may also wish to contact:
Self-Advocates Becoming Empowered (SABE)
P.O. Box 15162
Loves Park, IL 61132

ADAPT and SABE are planning meetings where legislators, advocates, and organizations across disabilities will work together to move the MiCASA Bill forward in the next legislative session.

Make your voice heard NOW!

EDITORIAL by Kathy Lissner-Grant
"MiCASA is the American Way!"

MiCASA is to have choices and control in where personal care services are delivered, instead of being told that if you need these services, it's off to the institution or nursing home with you! After all, regardless of disability it's the American dream to live in your own home. Many people with disabilities don't have that choice and have to live in places where it costs taxpayers a lot of money and they don't like it because it's like a gulag -- places like nursing homes and institutions where they don't have any freedom at all.

A few weeks ago people at the Denver Center for Independent Living, Atlantis ADAPT, and some people from Boulder went to the Democratic and Republican headquarters here in Denver. The Democrats there were fine and no problems occurred, but when we went to the Republican headquarters, there were over 20 people, mostly in wheelchairs, and some problems arose. The problems that arose were: 1. They didn't like it because we were blocking the halls and offices and we would not leave until we talked to the leadership about HB 2020; 2. The police were called because we were trespassing; 3. A few people were assaulted; 4. A lot of phone calls were made and a lot of negotiation was going on because we would not leave until we got what we wanted.

Finally we got to talk on the phone with the Republican leadership, and then we left to go out for some food.

(Ms. Lissner-Grant, the former Vice President of the Autism National Committee, is a self-advocate who recently relocated to Denver. She maintains a home of her own, a job of her own, and a newly adopted cat.)

Congressional Avengers Strike Again! Gorton and Gregg try to zap the IDEA

With a blatant disregard for the spirit of the law and the lengthy process we have just gone through to reauthorize the IDEA with reasonable consensus and minimal damage to our children's educations, Sen. Slade Gorton (R, WA), the only Senator to vote against last year's reauthorization of the IDEA, again donned his black cape, sharpened his pencil, and stealthily came to the aid of the school exclusionists.

Announcing his intention to attach an amendment to H.R. 2646, the Education Savings Act for Public and Private Schools, which had already passed the House, Gorton specified a new disciplinary provision which would undercut the rights of children with disabilities to a free, appropriate public education. This provision, dubbed the IDEA Flexibility Amendment, would allow each school district in the U.S. to adopt its own policies and procedures related to discipline, and to move students to restrictive placements or exclude them from an education entirely based on its own policies.

Gorton clearly intended that the enormous efforts of our disabilities community to preserve "zero reject" and the "stay put" provisions of the IDEA in its recent reauthorization would be wiped out by the vote on a bill that had no direct relation to special education at all, but was intended to increase the dollar limit of contributions parents can make to tax-exempt "education IRAs." Gorton was quickly joined in this attack by his colleague Sen. Judd Gregg (R, NH), and as Congress began its brief spring recess, parents across the nation resolved to spend their holidays phoning, visiting, and writing in protest.

Immediately upon its return, the Senate took up H.R. 2646 amid a flurry of last-minute Republican and Democrat amendments and counter-amendments. When the smoke cleared, Sen. Gorton and Gregg had withdrawn their IDEA Flexibility Amendment in exchange for the withdrawal of Sen. Wellstone's (D, Minn) welfare reform amendment, which would have allowed parents on welfare to count up to two years of higher education toward their work requirement. The once simple bill finally passed the Senate by a vote of 56-43 on April 23, trailing other unrelated amendments which would nullify Clinton's national educational standard initiative as well as block grant and deregulate federal school programs. The President promised a veto.

As we go to press, it is unclear whether our senatorial Caped Crusaders for Unequal Justice will renew their efforts in the near future. Despite last year's bipartisan, bicameral agreement, certain members of Congress are eager to reopen the IDEA amendments and change the parts they don't like. Stay tuned....

(Un)Fair Housing Act:
Revenge of the Zoning Codes: Coming soon, to a neighborhood near you!

The current Congress may succeed not only in keeping many children with disabilities out of the schools, but in keeping them out of their communities altogether. H.R. 3206, the "Fair Housing Amendments Act of 1998," would permit local governments to adopt more restrictive zoning codes that could threaten the continued existence of group homes and other community living arrangements for people with disabilities, as well as other unrelated groups of people living together such as children in foster care group homes.

Once legalized, this discrimination by disability could not be redressed under the Americans with Disabilities Act, and would cause more people to wind up in institutions. It is vitally important that we educate our Congressional representatives on this issue.

Coloradans Hope to Revive Seclusion and Restraint Bill: Use of these procedures for punishment and staff convenience has led to tragedy
By Carolyn Reed, Denver

It was almost four years ago that 17-year old Casey Collier was killed in a six-person take-down restraint, while institutionalized at a local residential child care center. He was restrained because he didn't want to go to the library and protested. The caretakers told him to sit down and he sat in the wrong place.. It made him mad and the caretakers decided he might hurt them, or needed punishing, or needed to be made an example of, so they jumped him. They held him down even when he said, "Guys, I'm chillin' I can't breathe." The person assigned to watch him for vital signs watched the back of his head from about six feet away. He died from lack of oxygen. The parents settled out of court and can't talk about it now.

But a handful of advocates in Denver can and do talk about it often. Since that time, a number of people have come together, first to protest (we marched on the facility where Casey had resided, Cleo Wallace, carrying signs that read, "People are dying to get out of Cleo Wallace, and "Cleo Wallace, restrain yourself!"). But for Cleo Wallace, it was business as usual.

Attorney Michael Breeskin, from Denver's Protection and Advocacy office, began a lengthy comparison of seclusion and restraint legislation in the U.S. and came up with a good example on which to base Colorado legislation. Massachusetts seemed to have the best, and so much of what finally became Colorado House Bill 1161 -- Protection of Persons from Restraint -- was based on that.

For 14 months after that, a number of bureaucrats, advocates, and capitalists from various "health care" industries got together and discussed the legislation. Representative "Moe" Keller, who is sponsor of the bill, included administrators and lobbyists from the Department of Education, the Department of Health and Hospitals, the nursing home industry, the Developmental Disability Services, the Department of Mental Health, the Department of Social Services, members of the child care worker community, and the Department of Youth Corrections, to name a few. Finally, after months of negotiating, the core group came up with legislation that almost everyone seemed to approve of.

Key components of the bill include provisions which prohibit the use of seclusion and restraint except in cases of emergency. This would prevent these practices from being used as punishment or for staff convenience. Additionally, the bill provides for more frequent safety checks on persons in seclusion or restraint, and provides for more "release" times.

Another component of the bill which would undoubtedly save lives is the prohibition of placing excess weight on a person's back or chest, and closer face-to-face monitoring of a restrainee's vital signs. The bill, it is hoped, would encourage the use of less invasive or degrading techniques to "control" behaviors.

The bill passed the state House H.E.W. I. Committee by a margin of 10-1, but when it got to Colorado's sometimes mean-spirited Appropriations Committee, it was postponed indefinitely by a tie vote (mostly along party lines, with Democrats approving and Republicans voting against it, even though the bill had a $ZERO fiscal note). The good news is that the bill has two Republican sponsors in the State Senate who are willing to sponsor it as a late bill, thus circumventing the Appropriations Committee altogether.

Currently, members of the core group supporting the bill are preparing for a fight with the hospital industry, which predictably wants to do whatever it wants. In fact, it was a hospital lobbyist who refused to come to the table and discuss the bill in the 14 month planning stage, who got to the Appropriations Committee members at the eleventh hour to discourage their "adding yet another layer of bureaucracy." Yet despite the hospital industry's claims to safe and humane use of restraint, people are still killed and assaulted while in seclusion and restraint in Colorado hospitals. One person, a 26-year old man with the label of autism was admitted to a Colorado hospital for a 72-hour emergency hold and was put in mechanical restraints. He was then raped by another patient. If there was a settlement, it's been hushed up. But advocates at the Arc of Denver insist it happened.

It happens in Colorado schools, too. A 9-year old girl with multiple disabilities was secluded and tied to a chair in a room off her classroom, where she fell, hit her head and received a skull fracture. That case is in litigation now. The Department of Youth Corrections also abuses the use of seclusion and restraint, it's been found, locking up some nonviolent offenders with mental illness and developmental disabilities in seclusion for sometimes months at a time.

Proponents of H.B. 1161 aren't going away any time soon, and promise that if it doesn't get passed this season, it will the next, or the next, or the next. For more information call the Arc of Denver at 303-831-7733.

LEGAL UPDATE

SUPREMES REFUSE HARTMANN CASE; FAMILY FINDS ITS OWN RESOLUTION
Parents reflect on the conclusion of their closely-watched school inclusion battle
By Joseph & Roxana Hartmann

During January 1998, the Supreme Court notified attorney Gerard Rugel that it had refused to consider the case of Mark Hartmann submitted in appeal by Mark's parents against the Loudoun County, Virginia, public schools. Loudoun County had bitterly contested Mark's right to an inclusive education in their system, despite his previous successful inclusion in Lombard, Illinois, and his subsequent successful inclusion after his mother decided to move with him to Blacksburg, Virginia (leaving husband Joseph and daughter Laura behind in Loudoun County) to assure him of an appropriate education.

Mr. Rugel, who was the legal counsel for Mark Hartmann since June 1994, when the Loudoun County School Board successfully brought due process against the Hartmanns to effect Mark's removal to a segregated setting, was disappointed but not surprised. Likewise, Roxana and Joseph Hartmann, Mark's parents, accepted the Supreme Court's action with little reaction. After the District Court overruled the decision of the original hearing officer and found in the Hartmann's favor, only to be reversed by the 4th Circuit Court (which held that Loudoun could decide its own educational policy and need not hold itself accountable to what other districts are able to accomplish), the family had come to expect a rollercoaster ride. They all realized that their chances were slim to compel the Supreme Court to hear legal arguments over the technicality used by Judges Wilkinson, Luttig, and Copenhaver of the 4th Circuit Court of Appeals to reverse the earlier District Court decision in favor of Mark Hartmann. Thus ended the legal battle over Mark's educational program in Loudoun County.

During this legal quest, common misperceptions, stereotyping, and degrading terminology about children with disabilities were used by Loudoun County to discredit Mark in the public eye and before the courts. This strategy was spearheaded by Kathleen Mehfoud, legal counsel for Loudoun County and other school districts in Virginia that are philosophically opposed to the inclusion of children with disabilities in the regular classroom. Mehfoud's distortions were embraced by the 4th Circuit Court, which demonstrated its pre-disposition in the case by its weak (in content) but powerful (in impact) decision that bypassed the substance of the case in its totality, opting instead to devolve decisions concerning "sound educational policy" onto "local school authorities."

Through it all, there was one legal mind that focused on the facts of the case and saw through Mehfoud's distorted version of reality -- Federal Court Judge Leonie Brinkema. Judge Brinkema correctly overruled the decision of the Virginia Department of Education because the administrative hearing officer did not have the opportunity to listen to the evidence of Marks' success in inclusive settings when he was provided with appropriate supports. Furthermore, Judge Brinkema uncovered the truth about the case: a calculated conspiracy by Loudoun County Schools to deny appropriate supports for Mark Hartmann in the classroom and thereby ensure his failure as an included student.

Judge Brinkema saw through the legal smoke screen and weighed the facts properly. With no effective supports, as occurred in Mark's second-grade year in Loudoun County, she found that Mark was "doomed to failure," but with them he benefitted from inclusion and did not disrupt or threaten the safety or learning of his classmates. Judge Brinkema's decision will forever stand as an indictment against Loudoun County Schools, and the admini-strators who allowed this betrayal of public trust to take place.

The Hartmanns learned that the Loudoun County public schools are politically charged with an educational philosophy dating back to the early 70s -- especially in its view of special education. Further, that it is obvious that Loudoun County's School Board is nothing more than a rubber stamp for the Superintendent of Schools. This arrangement has produced a system wherein there is no accountability to ensure successful educational programs. Finally, if you are an informed parent of a child with a disability, Loudoun schools will not likely be your ally unless you accept legal counsel Mehfoud's interpretation of the IDEA and her decisions relating to your child. The Hartmanns will not return Mark to Loudoun County under any circumstances.

Mark is prospering as a fully included student in 6th grade at Blacksburg Middle School. His favorite subjects are Social Studies and Reading.

Joseph, Roxana, Laura, and Mark Hartmann want to thank the Board and members of the Autism National Committee for all their support.

PERSPECTIVES ON BEHAVIOR ISSUES

Rethinking Challenging Behaviors:
New science questions routine assumptions of volition and intent

In recent years the state of the art in approaching people with challenging behaviors has proceeded from the assumption that such behaviors are volitional, motivated forms of commun-ication. From this premise it follows that decoding their message will reveal the intentions and feelings of a particular person regarding the situation in which the behavior occurred. Unfortunately, the decoding mission performed in traditional behavioral approaches has consisted of matching a limited range of motivations and intentions to the behaviors under scrutiny, most of them variations on the themes of attention-seeking, noncompliance, manipulation, avoidance, and the ever-popular (if under-explained) "self-stimulation."

While the general concept of looking for communication in difficult behavior represents a step forward from certain implicit assumptions of the past -- e.g. that such behavior is meaningless, gratuitous, or even a sign of some form of evil possession -- a large and rapidly-growing body of research is seeking and finding a wider range of interpretations through investigation of the role of various neurological syndromes in the production of problematic behavior. These investigations allow us to question the potentially dangerous assumption that a particular behavior was preferred or deliberately chosen, and therefore that it can be understood simply as a "communication" of one of the above themes.

For example, one important brain-behavior connection has been found between frontal-lobe (subclinical) seizures, in which the person does not lose conscious-ness, and behavior which appears "aggressive," "self-injurious," or "self-stimulatory." If the person does not speak (or speak reliably), caregivers may misinterpret such behaviors as intentional and construct a behavior plan based on consequences, thereby adding stress and pressure which merely prolong the seizure episode. (See "Recognizing involuntary movements with vocalizations and autonomic changes," by A. Gedye, PhD, The Habilitative Healthcare Newsletter, Vol. 15, No. 4, July/August 1996). A brief report on this seizure research in The Communicator of Summer-Fall 1997 generated an outpouring of interest among our readers, many of whom felt they had been given a key to behaviors which had long puzzled them, had not responded (or negatively responded) to typical behavioral interventions.

Research indicates that another condition which may be reflected in behaviors that appear aggressive or self-injurious is untreated mood disorders such as depression or bipolar disorder. Recognition of the presence of a mood disorder may also help us account for a person's puzzlingly inconsistent responses to events in the environment -- behaviors which are often treated as "fickle" and manipulative. In the example given by one researcher in the field: "During depressive episodes, staff prompts intended to get the person involved in an activity produced the problem behavior. During manic episodes, prompts to slow the person down or focus attention produced the behavior symptom." (William I. Gardner, "Nonspecific Behavioral Symp-toms: A Psychological Model for Selecting and Monitoring Biomedical and Psychological Interventions," Conference Proceedings: 12th Annual Conference of the National Association for the Dually Diagnosed, Nov. 29-Dec. 2, 1995, p. 143).

Researchers are also beginning to consider the impact of tic disorder, which has a very wide range of forms and expression grading into obsessions and compulsions; of Post Traumatic Stress Disorder (PTSD), symptoms of which include explosive anger, self-injury, and reliving the experience of the traumatic events; of apraxia, which intermittently causes an individual to become "stuck" and unable to continue an activity; and of other psychiatric and biomedical states which may act as necessary or sufficient causes of behaviors frequently subsumed under the diagnosis "autism" and "treated" by methods that assume a great deal about intent.

As Ralph Maurer, MD, warns, "Be cautious about attributing motivation or intent to these behaviors, and caution everyone else to be cautious, too. To behave in a particular way because that's the option you prefer, and to behave that way because you don't have other options, are different kettles of fish, and the appropriate strategy to use to manage the one may be exactly the wrong strategy to use to manage the other." ("Autism," a chapter of Advanced Therapy in Child Neurology, in press). Behavioral strategies based on consequences -- either negative or positive -- are particularly ineffective and inhumane when used to shape or to extinguish behaviors which are not under the individual's direct control. Their use under such circumstances may exacerbate the behaviors in question and even result in long-term psychological trauma.

Using Mutual Sharing to Teach Children How to Cope with Frustration,
by Lisa Landon, M.A.

In her book Positive Discipline, Jane Nelson, EdD. describes the concept of mutual sharing and suggests that parents use bedtime as a time for mutual sharing on a daily basis. I have found routine mutual sharing to be a powerful tool for teaching my child (and reminding myself) that life is richest when we take the time to reflect on the wide variety of emotional experiences that come with each and every day. Our heightened awareness of this variety helps us to realize that all of our experiences are meaningful and valuable, even when things aren't going our way.

I believe that this realization is particularly encouraging and useful to children with special needs, who frequently experience frustration as they struggle to understand and adapt to their environment. The concept of acceptance can be summed up in a simple verbal expression, for example, "c'est la vie," "life is good," "and so it goes" and offered during mutual sharing as encouragement to a struggling child. Through repetition, the expression becomes a metaphor for the inner experience of coping, that the child can draw upon when they experience frustration and feel discouraged. Using inner resources rather than attempting to control the world outside (i.e. lashing out at parents) fosters a genuine sense of competence and independence that is far more gratifying than external rewards or praise.

By participating in mutual sharing with their children, parents will quickly learn that validating negative feelings does not reinforce negative behavior. Quite the contrary, validation encourages children to feel secure with their emotions and use interpersonal communication as an effective alternative to impulsive and/or negative behavior. Following is an example of a bedtime routine that I used to help my 4-year old son be more attuned and adaptive to the environment:

Each night as I tuck my son in bed and prepare to say good night, we discuss two questions. What was the best thing that happened today? And what was the worst? Since the bad things are history at this point, I really take advantage of the opportunity to validate his negative feelings. If he says the worst thing was when Johnny rode his bike around the circle backwards, I go along with him and say things like, "Oh, yeah! I remember how super duper angry that made you, you wanted him to do it your way and he wouldn't do it!" After we have each shared a few of our experiences, I tally them up and ask, how can we make sense of this? "So you had three favorite things and one worst thing happen today...what do we say?" The answer is always the same: "That's life!" spoken with a sign and intonation that conveys humor and acceptance. After several days of using this routine, I introduced the phrase in a daytime situation, as we were watching a horse struggle with frustration. My son watched and smiled as I encouraged the horse with our now familiar expression: "Poor Radar, he only got one carrot while Data got two...oh well, Radar, that's life!" Soon he began to use the phrase in response to a simple facial cue from me. He can now call upon this attitude of acceptance independently, some-times saying "that's life" out loud, other times just thinking it to himself.

Children learn from their adult models. In their efforts to gain a child's attention and cooperation, caregivers can inadvertently model a general disregard for children's subjective experiences. I believe that autistic children may actually learn that other people's feelings are unimportant. By making a conscientious effort to model reciprocal communication, begin-ning with validation of the child's thoughts and feelings, I have found that even children who have a pattern of avoidance or with-drawal from social interactions, have the potential to be excep-tionally attuned and empathic to others. In addition, by practicing mutual sharing, caregivers will find that not only do unpleasant experiences and negative feelings become more manageable, but ultimately, they can become an accepted and valued part of life.

FOR FURTHER READING: In addition to Jane Nelson's Positive Discipline (1987: Ballantine), Lisa Landon recommends John Gottman's The Heart of Parenting (1997: Simon & Schuster).

Beach Center Studies Stakeholder Perspectives on Positive Behavior Support

Administrators, policy makers, families, friends, individuals with challenging behavior and mental retardation or autism, and teachers participated last year in a series of twelve focus groups through The Beach Center on Families and Disability. Through these discussions Beach researchers hoped to develop a better understanding of the experiences of different stakeholder groups in supporting people with challenging behavior.

Common themes which emerged were the need for trusting relationships, respect, and clear communication between givers and receivers of support, as well as the effectiveness of individualized, nontraditional strategies. Across the focus groups, participants spoke of the need for greater trust, sharing, and collaboration among the variety of people striving to support each individual. Many participants felt that current information on positive behavior supports was not "user-friendly," and that much work remains to be done to develop materials designed for easy reference by parents, teachers, and administrators.

The Family Connection at the Beach Center on Families and Disability is working to close this information gap with a variety of publications, some free and others at a minimal charge. Contact The Family Connection/Beach Center at 3111 Haworth, University of Kansas, Lawrence, Kansas 66045. TEL 1-800-854-4938; Web page: www.lsi.ukans.edu/beach/pbs.htm

ASK ROB:

AUTCOM Vice President Rob Cutler answers readers' queries from his unique perspective as a person with autism.

QUERY: What does the current search for the genetics of autism mean to you and your family?

ANSWER: I come from the best genes God had. My father is Dr. Cutler from California, Stanford University. My Mom's genes were destined for an angel, but God decided she would be human. My parents' genes are normal, but expertless people say it's their fault I have autism. The truth is it was God's decision.

People with autism have a gene that makes us never to lie. My father, Dr. Cutler, and I are different, but this is good. You would not want our ideas to be the same, would you?

If they find the gene for autism, will the world be denied our presence? Instead I think there should be a study on the genes of people who use aversive abuse.

QUERY: From your comments at the NIH genetics research meeting, it seems that you have had very personal experiences of the way people with autism are abused and silenced. Can you describe what happened?

ANSWER: I have survived the state's Fernald Penitentiary (Editor's note: Fernald is the Massachusetts state center where Mr. Cutler was once forced to stay when funds for community living were denied him.). Fernald was worse than prison. The food was garbage. My daily life was militarylike. I lost the right to be human when I entered Fernald. My mother visited me often. The staff hated my Mom. It was a horrible experience. The screams through my stay were screams for freedom. A staff person loved to beat and hurt me. I hated this, but I had no voice. My brain moves fast, but I can't speak well. I wish there was a computer. I would have typed my case and closed this place down. Aren't prisoners given access to a law library? I was never offered this opportunity.

Please send queries to "Ask Rob," c/o The Communicator.

As we listen to our members....
Questions arise about PTSD among people with autism

As we learn to listen to people with autism, to their families and to their friends, evidence is growing that, in certain extreme circumstances, behaviors typically explained away as newly-emerged symptoms of the person's autism may in fact indicate something else: Post-Traumatic Stress Disorder, or PTSD.

The general public may have heard of this disorder occurring among Vietnam veterans, Bosnian civilians, or even the young witnesses to the recent spate of schoolyard shootings. In her widely-read book Trauma and Recovery (NY: Basic Books, 1992), Judith Lewis Herman, M.D., describes the origins and consequences of Post-Traumatic Stress Disorder:

"The human response to danger is a complex, integrated system of reactions, encompassing both body and mind. Threat initially arouses the sympathetic nervous system, causing the person in danger to feel an adrenalin rush and go into a state of alert. Threat also concentrates a person's attention on the immediate situation. In addition, threat may alter ordinary perceptions: people in danger are often able to disregard hunger, fatigue, or pain. Finally, threat evokes intense feelings of fear and anger. These changes in arousal, attention, perception, and emotion are normal, adaptive reactions. They mobilize the threatened person for strenuous action, either in battle or in flight.

Traumatic reactions occur when action is of no avail. When neither resistance nor escape is possible, the human system of self-defense becomes overwhelmed and disorganized. Each component of the ordinary response to danger, having lost its utility, tends to persist in an altered and exaggerated state long after the actual danger is over.

Traumatic events produce profound and lasting changes in physiological arousal, emotion, cognition, and memory. Moreover, traumatic events may sever these normally integrated functions from one another. The traumatized person may experience intense emotion but without clear memory of the event, or may remember everything in detail but without emotion. She may find herself in a constant state of irritability without knowing why. Traumatic symptoms have a tendency to become disconnected from their source and to take on a life of their own." (p. 43)

Among the symptoms of PTSD described by Dr. Herman are alterations in affect regulation, which may be manifested as self-injury or explosive anger; alterations in consciousness, including the unwanted reliving of experiences, either in a sudden, intrusive manner or as a preoccupation or thought that won't go away; and alterations in a person's sense of self or of relations with others, resulting in manifestations of helplessness, paralysis of initiative, isolation, or withdrawal. (p. 121)

As Herb Lovett observed, "People who have been hurt in the name of therapy may not understand their plight any differently that survivors of cult abuse or sexual abuse. A common feature of post-traumatic stress syndrome is the flashback in which a person acts as if a memory is present reality.... every time they recall their previous maltreatment, unless their panic and rage are recognized as a function of stress, they are likely to be further stigmatized as 'impossible to serve.'" (p. 208, Learning to Listen, 1996).

Those who are without speech, whose ability to produce the needed words "on demand" is unreliable, or whose words are discounted, not only may be more vulnerable to what we perceive as "typical" criminal acts, but also to experiences of intense frustration, helplessness, and entrapment in "no-win" situations. An unreliable sensorimotor system -- a body that does not always do what you want it to do -- in combination with "treatments," services, and living facilities which not only fail to help the person accomplish what they need to do, but make their quality of life contingent on their successful accomplishment of what someone else wishes them to do, may, however unintentionally, establish a situation of intense threat from which neither victory nor escape are perceived possible. Those families and people with autism who have reported to the Autism National Committee on trauma-type symptoms often connect them to experiences of this type of "entrapment."

Despite fairly abundant anecdotal evidence, knowledge of the nature, prevalence, and treatment of psychological trauma in the lives of people with serious disabilities is lacking. Herman's book suggests a possible reason. In outlining the historical roots of PTSD research, she observes that "Periods of active investigation have alternated with periods of oblivion." (p. 7). Three forms of trauma have come to light over the past century, and "Each time, the investigation of that trauma has flourished in affiliation with a political movement." (p. 9).

The first to come to public awareness was "hysteria," which the late nineteenth century was briefly inclined to consider as a possible manifestation of the isolated, politically powerless lives led by most Western women (an interpretation later dismissed in favor of Freudian reductionism). The second form of trauma to be studied was "shell shock" or combat neurosis, which became an issue in England and the United States after the First World War and reached a peak after the Vietnam War. Here the political context was the growth of an antiwar movement and a re-thinking of the effects of armed combat in the modern world. The last and most recent type of trauma to achieve widespread public awareness was sexual and domestic violence, spotlighted by the feminist movement as well as modern political advocacy to secure the human rights and protection of children. Many people with disabilities and their advocates would like to add to Herman's list a fourth category, but its recognition may well be dependent on their success in bringing political awareness of issues such as aversive "treatments" and institutional living conditions.

The personal and public recognition of trauma which occurs at the hands of another human being is difficult to achieve, Herman notes: "When traumatic events are natural disasters or `acts of God,' those who bear witness sympathize readily with the victim. But when the traumatic events are of human design, those who bear witness are caught in the conflict between victim and perpetrator. It is morally impossible to remain neutral in this conflict. The bystander is forced to take sides.

It is very tempting to take the side of the perpetrator. All the perpetrator asks is that the bystander do nothing. He appeals to the universal desire to see, hear, and speak no evil. The victim, on the contrary, asks the bystander to share the burden of pain. The victim demands action, engagement, and remembering. ...

In order to escape accountability for his crimes, the perpetrator does everything in his power to promote forgetting. Secrecy and silence are the perpetrator's first line of defense. If secrecy fails, the perpetrator attacks the credibility of his victim. If he cannot silence her absolutely, he tries to make certain that no one listens. To this end, he marshals an impressive array of arguments, from the most blatant denial to the most sophisticated and elegant rationalization.... The perpetrator's arguments prove irresistible when the bystander faces them in isolation. Without a supportive social environment, the bystander usually succumbs to the temptation to look the other way...." (pp. 7-8)

How much more operative might this principle be when the victim can be characterized as a person with a severe disability and problem behaviors who must experience aversive "treatments" as a "medical necessity," and when the perpetrator seems both pleasant and reasonable? As Herman observes, those who expect a purveyor of abuse to radiate warning signals will find themselves confused: "Since he does not perceive that anything is wrong with him, he does not seek help -- unless he is in trouble with the law. His most consistent feature, in both the testimony of victims and the observations of psychologists, is his apparent normality.... Authoritarian, secretive, sometimes grandiose, and even paranoid, the perpetrator is nevertheless exquisitely sensitive to the realities of power and to social norms. Only rarely does he get into difficulties with the law; rather, he seeks out situations where his tyrannical behavior will be tolerated, condoned, or admired. His demeanor provides an excellent camouflage, for few people believe that extraordinary crimes can be committed by men of such conventional appearance." (p. 75).

Nor do perpetrators of abuse have to resort to violence in order to cause trauma: "Although violence is a universal method of terror, the perpetrator may use violence infrequently, as a last resort....Fear is also increased by inconsistent and unpredictable outbursts of violence and by capricious enforcement of petty rules." (p. 77)

Dr. Herman finds other key elements in the development of PTSD to be "isolation, secrecy, and betrayal (which) destroy the relationships that would afford protection." (p. 100). In the absence of relationships with caring, affirming people, the foundation of personal development is undermined.

The only way back from severe psychological trauma is through re-establishing the person's connectedness with others: "Traumatic events destroy the sustaining bonds between individual and community. Those who have survived learn that their sense of self, of worth, of humanity, depends upon a feeling of connection to others. The solidarity of a group provides the strongest protection against terror and despair, and the strongest antidote to traumatic experience. Trauma isolates; the group recreates a sense of belonging. Trauma shames and stigmatizes; the group bears witness and affirms." (p. 214).

It may be significant that the reestablishment of trust and connectedness to others is also the factor credited with bringing improvement to the lives of people with autism who believe, or whose families believe, that certain of their symptoms originated in psychological trauma. Clearly we have much more to learn as this issue begins to receive the attention it deserves.

AUTISM AND GENETIC RESEARCH

NIH Meeting Facilitates Research on Genetics of Autism;
AUTCOM reps attend with a little facilitation of their own
By Sue Lehr, PhD

On January 7, 1998, AUTCOM President Sue Lehr, PhD, Vice-President Rob Cutler, Mr. Cutler's friend and facilitator Mark Powell, and AUTCOM Scientific Advisor Ralph Maurer, M.D., attended a meeting in Washington, D.C., sponsored by the National Institutes of Health Autism Coordinating Committee (NIH/ACC). The stated purpose of the meeting was to "bring together clinical and genetic investigators in autism research funded by the four NIH Institutes (NICHD, NIDCD, NIMH, NINDS), the Medical Research Council (MRC-United Kingdom) and representative national parent associations that support research." The primary goal of the meeting was "to facilitate communication and cooperation among all invested in the genetic research of autism, in order to foster rapid progress in understanding the genetic basis of this complex disorder."

After initial introductions and a brief review of the agenda, Dr. Peter Jensen invited the participants to discuss how to appropriately involve families with major academic and research groups so that appropriate screening and diagnostic purposes could be met that would lead to further research. The different research communities responded that there is a dramatic need for finding families, especially those with sibling pairs, and those with similar diagnostic criteria. There was general consensus that it is important in genetic research of autism to look for common markers; that is, to seek standardized phenomena so that everyone is looking at the same thing, at least initially. In order to accomplish this, the group concurred, there is a need for a common understanding of the diagnosis of autism. The group was to return to this topic later in the day, but now the discussion turned to how difficult it is to find families who are willing and able to participate in such research.

Dr. Ralph Maurer used this moment to invite the participation of Rob Cutler and Sue Lehr. He acknowledged that as a person with autism, Rob has a unique perspective on how to invite participation. As a parent of an adult son with autism, Sue Lehr has some information about how parents might be approached as participants. Dr. Maurer's introduction gave Rob and Sue an opportunity to comment.

Rob Cutler used facilitated communication to express himself. With the support of his friend Mark, Rob facilitated the comments included in this article. He invited Sue Lehr to read some of his comments to the larger group. In the comments that follow, those comments that were authored by Rob will appear in quotes. Those read to the group will be noted accordingly.

As the discussion of the focus of genetic research on autism proceeded, Rob and Sue listened as researchers explained that their goal was to understand its cause or causes, and what role genetics played in creating this syndrome and its myriad manifestations.

Rob Cutler, however, had a different view of what the ultimate goal of such research might be. He typed, "I smell a rat! I think the bottom line will be the elimination of autism as we know it. Autism tampering will be like dropping the atom bomb. Genetic tampering is wrong. We must spend money on understanding autism, instead of genetic tampering." With these thoughts, he posed this question to the entire group: "If they find the gene for autism, will they extinct this gene?" It was an unexpected and provocative question that gave rise to a sustained silence. Dr. Marie Bristol-Power, of the National Institute for Child Health and Human Development, assured Mr. Cutler that this was not the intention of the genetic research group. She explained that this group, and others involved in autism research, are attempting to identify any genetic base for autism so that better diagnostic procedures and treatments can be developed. She added that with this new knowledge may come a better understanding of the cause and nature of autism, and eventually there may be a cure.

This prospect of a "cure" alarmed Rob, and me as well. Rob typed to Sue, "It will be important to know that people with autism are human beings. I am not a cruel man with autism but I am an adult on earth who cares about finding the autism gene. I have a hypothesis. Each person with autism has a unique set of genes."

We added that we know many wonderful people, like Rob and my son Ben, who have a great deal to contribute to this world, and who are valuable human beings that should not be slated for extinction simply because they have autism.

Following this brief exchange, the group turned its focus on how to recruit families, establish assessment criteria and standards for initial screening, preserve biological materials for subsequent research, maintain confidentiality, share data and collaborate with parent organizations. There was consensus that it was unlikely that they all would agree on the design of autism research since they are not sure what they are looking for. In addition, they noted that with the rapid technological changes occurring every day, there will be a constant need to revise and rethink what they are doing.

Rob Cutler believed that, indeed, they were studying the wrong aspect of autism. He made several suggestions to me and, although we did not have an opportunity to voice these to the larger group at the time, they warrant repeating here: "Good research could be done on Mark and I. I have autism. He has bipolar. We continue to work in step. Amazing how both of us overcame our negative stereotype and Mark found a way for me to grow positively."

Rob also suggested that "A solution would be to have a room full of people with autism. We could give you real data about our similarities faster." Rob also wanted research in another area: "I think you need to find out how much of our disruptive behavior is because of allergy or neurological. Medicine like Depakote, Benadryl have helped me. Gene research on autism is o.k." In response to a discussion about autopsy research on the brain, Rob commented to me, "It would be more important to see us when we are alive. Come out of the lab and come into the fresh air." Although Rob did not get to share these research agendas at the time, his ideas are compelling.

Finally, he said, "I think there should be a study on the genes of behaviorists, who use aversive abuse to reach a goal that was useless data. I have been tested by behaviorists who wanted me to behave their way. If I was good, I was given food. If I was bad, I was restrained. Behaviorism failed me. I almost lost my soul." He named several prominent behaviorists and noted that s study of their genes may show that "Their genes come from a place called hell." Rob Cutler and Sue Lehr hope to share these ideas with researchers at a future date.

As the meeting progressed, the participants eventually formed the following working groups: First was a "Unique Identifier group which would develop a common number system across the U.S. and Europe to identify individual subjects in autism genetic studies, avoiding subject overlap and confusion."

The second group was the "Parent-Investigator Interactions/ Recruitment group which will investigate how to maximize parent support associations' involvement and investigate interactions to promote an understanding of research among families and facilitate the recruitment of autism families."

The third working group will work on informed consent, and the fourth and last group will establish guidelines for database development and management of data for archival research.

The meeting ended with a general discussion of other issues that could facilitate better research. Some of these included establishing e-mail connections among researchers and parent groups, developing a World Wide Web site, development and dissemination of training tapes about the research being conducted, and establishing panels of researchers and others to review diagnostic criteria and procedures to validate the diagnosis of autism.

The meeting concluded with a consensus that there was a definite need to continue to work together in order to "unravel the genetic mysteries of autism." Rob had more to say about this: "If you want to study us, close institutions and visit us at our homes. I have survived the state's Fernald Penitentiary (Note: Rob was once forced to live at Massachusetts' Fernald State Center). I was beaten, locked in dark rooms, not because I was bad, but because no one took the time to understand me. Too much useless data taken, not enough time understanding me. If you want, you can study me. You will probably end up with a library full of data. But you might get something more useful, a friendship with me. I am not the same as another person with autism. I am me."

Although Rob Cutler did not have the opportunity to present these comments to the large group at that time, he did have the chance to meet individually with many of the participants following the formal meeting. Dr. Marie Bristol-Power, Dr. Peter Jensen, Dr. Steven Moldin, and others greeted Mr. Cutler after the meeting and invited his comments. They expressed their pleasure that he had attended and had had the opportunity to share some of his unique insights.

QUOTES TO PONDER: Stephen Jay Gould on genetic reductionism

"Somehow, we remain fascinated with the idea that complex social behaviors might be explained, at least in large part, by inherited `atoms' of behavioral propensity lying deep within individuals. We seem so much more satisfied, so much more intrigued, by the claim that a definite gene, rather than a complex and inextricable mix of heredity and social circumstances, causes a particular phenomenon. We feel that we have come so much nearer to a real and essential cause when we implicate a particle within an individual, rather than a social circumstance built of multiple components, as the reason behind a puzzling behavior....We like simple kinds of explanations that flow in one direction from small, independent, constituent atoms of being to complex and messy interactions among large bodies or organizations. To use the technical term, we prefer to be `reductionists' in our causal schemes -- to explain the physical behavior of large objects as consequences of atoms in motion, or the social behavior of large animals by biological atoms called genes....The three common errors of genetic explanation all share the same basic fallacy of reductionist assumptions.

1. We think we have become oh so sophisticated in acknowledging that both genes and environment produce a given outcome, but we then err in assuming that we can best express this correct principle by assigning percentages and stating, for example, that behavior A is 40 percent genetic, and 60 percent environmental. We must understand why such reductionist expressions have no meaning. Genetics and environment do interact to build a totality, but resultant wholes are unbreakable and irreducible to separate components....

2. We also think that we have become sophisticated in saying that many genes ...set the hereditary basis of complex behaviors. But we then take this correct statement and impose the reductionist error of asserting that if behavior A is influenced by ten genes and is 50 percent genetic (by the first error), then each gene must contribute roughly 5 percent to the totality of the behavior. But complex interactions are not built as the sum of independent parts considered separately....

3. We think that we are being sophisticated in qualifying statements about `genes for' traits by admitting their only partial, and often small, contribution to an interactive totality....We need to understand why such statements are truly meaningless and therefore worse than merely false.....

The deepest error in this third category lies in the reductionist and really rather silly notion that we can even create rigorous definitions for discrete, separable, specific traits within the complex continuum of human behaviors."

(pp. 74-76, "The Internal Brand of the Scarlet W" in Natural History, March 1998.)

Stephen Jay Gould, author of the oft-quoted The Mismeasure of Man, is the parent of a young man with autism. He relates the tale of his son's hard-won computational abilities in his recent book, Questioning the Millennium.

RESEARCH OPPORTUNITIES

NAAR funds autism research grants

The National Alliance for Autism Research (NAAR) is soliciting biomedical research proposals relevant to understanding the etiologies and treatment of the autism spectrum disorders. NAAR aims to support research in all areas which may advance its mission, including basic and applied research both clinical and non-clinical in nature. The organization also produces a useful newsletter. Contact NAAR at 414 Wall Street, Research Park, Princeton, NJ 08540; TEL 609-430-9160 (toll free 888-777-NAAR); FAX 609-430-9163; E-MAIL NAAR @ NAAR.ORG

BOOK REVIEWS

WHERE IS BEHAVIOR?

Two important books redraw the map... while a third navigates in circles

Developing Through Relationships: Origins of Communication, Self and Culture, by Alan Fogel.
1993: University of Chicago Press. AUTCOM BOOKSTORE PRICE: $18

The Autism National Committee has become known as a promotor and explicator of relationship-based, developmental approaches to people with autism; of the practice of positive, nonaversive approaches as an ethical imperative, and of a politics centering on human rights and civil rights. Alan Fogel's Developing Through Relationships: Origins of Communication, Self, and Culture makes it abundantly clear that these three foci of our advocacy are inseparable, basic to biological, psychological and political/social functioning, and reflective of a deep, rich, and well-documented tradition of scientific research. Fogel's genius is not only in his ability to document this tradition, but to do so in a way that is fully accessible to the general reader.

Fogel, Professor of Psychology at the University of Utah and the author of a number of books including Child Development: Individual, family, and society, points out that modern concepts of development depart from traditional, linear "discrete state models": "Throughout the work, I contrast an objectivist perspective on individuals and their development with a relational perspective. The objectivist tradition of Plato and Descartes is the basis of our current scientific methodologies. It is the view that perceptions and cognitions are characterized by their contents, contents that are more or less a direct copy of the way the world is structured. The cognitive contents are believed to be freed from the context in which one learns about the world. I refer to all such objectivist models as discrete state models of communication, self, cognition and culture....I believe

that cognition and perception are not mirrors of reality, but relational processes that reflect the ways in which we have experienced the world....The human mind and sense of self must be understood as evolving out of the historical process of personal relationship formation between the self and other individuals." (p. 4).

Fogel then introduces the key concept of co-regulation: "Co-regulation arises as part of a continuous process of communication, not as the result of an exchange of messages borne by discrete communication signals. Co-regulation is recognized by its spontaneity and creativity and is thus the fundamental source of developmental change....If our genes provide us with any developmental guideline at all it is our ability to enter into co-regulated discourse." (p. 6).

In opposition to the common metaphor of mind as computer into which "bits" of information can be fed by any technician in any wired setting, Fogel emphasizes that "Co-regulation is creative because information is not entirely fixed in advance, not entirely `in' the self or `in' the other. Information becomes available only through active engagement.... When relationships evolve into patterns in which participants perceive them as sequences of discrete exchanges of reward and cost it is quite likely that the creativity has gone out of them. They are no longer dynamic systems in which individuals grow, they have become prisons of the soul." (pp. 89-90).

The concept of co-regulation is fundamental to a different tradition of science which seeks to explain complex psychological, biological, and social/political activities as self-organizing, interdependent, dynamic systems. Most of us have had at least a basic encounter with the idea of dynamic systems thinking through our growing ecological awareness. That awareness arose when various products of Cartesian science, perhaps most obviously those engineering processes involved in harnessing, exploiting, and extracting resources from the environment, were gradually observed to yield unexpected and highly undesirable consequences. Even the average man-on-the-street came to appreciate that biologists had made a fundamental breakthrough when they began to study, not separate life-forms acting according to separate "natures" or properties, but the interrelationships of a vast, ever-adjusting ecological system.

At the "micro" level, the evolving systems dynamics approach in biology has challenged researchers to rethink past assumptions about the nature and operation of genes. Once pictured as direct and simple blueprints for development, genes are now understood to have a far more complex, tenuous, and malleable relationship to the ever-unfinished creatures which carry them (see the quote from evolutionary biologist Stephen Jay Gould on p. 29 of this issue).

In psychology, the systems dynamics approach refutes the Cartesian mind-body dualism by studying human activity as a complex system rather than one controlled, top down, by brains which are in turn controlled by genes. Drawing on the work of researchers such as Esther Thelen, who finds motor/sensory experience rather than a pre-ordained scheme of "stages" pre-programmed in the brain, to be the engine which drives the growing child, Fogel states, "Develop-mental change is as much the result of changes in the body and its environment as it is of brain or cognitive re-organization." (p. 50). Furthermore, he suggests that emotions, like all cognitions and perceptions, are not "in" the developing child, but are "created as part of a process of engagement with the environment." (p. 135).

Last but not least, in politics dynamic systems models of stability, change, and revolution have suggested that even the functioning of huge social systems is predicated on the types and qualities of relationships permitted within and among the levels of their hierarchies, and not simply (as the social studies texts would have it) on relations between citizens and their leaders.

Models of systems dynamics, in which the structure of the whole flows from the mutual coordination of the parts, also suggest a great deal about the nature of ethics. Fogel demonstrates the ways in which co-regulation in human development gives birth to a sense of self-in-relation to others, and therefore of a responsibility to self and others, of the imperative for acceptance of others, and of our treasured concepts of rights, privileges, and responsibilities in society, making of these different levels a seamless whole.

Advocates of vulnerable people in the biological, psychological, and political systems can readily see how violations of these vital relationships compound themselves: the developing child who is to be "fixed" by having his behavior controlled is cut off from "relationships of mutual coordination," is often subjected to aversive treatments on the grounds that they will supply him a certain information content which can be delivered without consideration of the messages sent by its context, and is incrementally deprived of rights and placed in more and more artificial settings as the above systems-violating engineering "solutions" give rise to a steady stream of unwanted side-effects. Not surprisingly, such a model of linear thinking has been dubbed a "cradle to grave service continuum."

Fogel contrasts the assumptions about the objective self which underlie Cartesian science (and, we might add, much of what we know as "education" and virtually all of what we do to "treat disabilities") with what research into systems dynamics now shows us. We have been taught to consider ourselves as unitary beings with an identity encased in defined boundaries, and to believe that our thinking achieves abstractions which are context-free and without reference to society, culture, or our personal history. In fact, if Fogel is correct it appears that what the great religions have always taught, science is now bearing out: our self in not contained in our brain or even in our skin; rather, its essence is an interdependent part of something much larger, for which it bears and of which it rightly asks responsibility. The self is social, having multiple positions, perspectives, and embodiments, and it is contextual, defined through our personal histories and our culture -- a culture which, ironically, encourages us to think the opposite.

The perspective of systems dynamics offers a powerful critique of typical approaches to those people for whom we advocate. All too often they are treated as if they had been born with a "thing" called autism which professional staff must work to surgically remove. Considerations of the quality and scope of their relationships and the ongoing role of relationships in their development are seldom called into play, despite the ever-growing body of research indicating that this role is central. And for all of the extensive research (over 550 items in the bibliography) underpinning Fogel's book, he too recognizes that we are only on the brink of comprehending and tapping the power of development as it actually occurs, through relationship. "I think," he muses with humility at the close of this wonderful book, "we know less about what is between us in our everyday relationships than we know about the austere space between stars in a galactic frame." (p. 189).

ALAN FOGEL WILL GIVE A KEYNOTE AND A WORKSHOP AT AUTCOM'S 1998 ANNUAL CONFERENCE!

A Dynamic Systems Approach to the Development of Cognition and Action, by Esther Thelen & Linda B. Smith. 1995: MIT Press. AUTCOM BOOKSTORE PRICE: $27

Reviewed by Alan Kurtz

On a number of occasions AUTCOM has invited speakers to its annual conference who had little or no background in autism. Invariably these individuals have provided thought provoking insights and fresh new perspectives. Such was the case with one of last year's keynote speakers -- Esther Thelen. In challenging traditional assumptions about the nature of human development, Thelen stimulated us to think about autism in radically new ways.

A detailed exposition of Thelen's theory can be found in A Dynamic Systems Approach to Development of Cognition and Action, which she co-authored with Linda B. Smith. The authors challenge many long-held theories about the processes which cause both developmental change and the formation of stable behavior patterns. In particular, they reject the idea that typical stages of development are somehow pre-programmed or determined in advance, awaiting the next phase of brain development or the next message from a genetic blueprint to switch them on. Instead, they argue that behavior associated with these stages emerges as a person individually explores and interacts with the environment.

DYNAMIC SYSTEMS THEORY
Thelen and Smith use a dynamic systems approach. Complex systems, whether they are physical, chemical, biological, or social, tend to behave and evolve in characteristic ways described elsewhere as chaotic or self-organizing. The concept of self-organizing systems has become increasingly important in many branches of science as these disciplines recognize the insufficiency of reductionist attempts to describe phenomena in terms of their constituent parts (e.g. explaining autism via a list of observed "behaviors" or "traits").

In contrast, dynamic systems must be described in their own terms. Their characteristics are not predictable from an examination of their parts; rather, the whole is constantly influenced by all components. To talk about dynamic systems is to talk about process rather than describe content, and to consider the widest web of influences rather than confine the phenomenon to be studied within arbitrary boundaries.

Thelen and Smith show how human infants grow both motorically and cognitively as dynamic systems. They develop, just like other complex systems, by passing through stable states to periods of instability. These periods of instability act as a source of change as infants explore and select new patterns of behavior.

New behavior patterns can emerge in the course of development because of the ability of various parts of the brain to integrate with one another. In Thelen and Smith's dynamic model of development, no executive component performs this integrating function in a top-down, hierarchical manner. Rather, behavior emerges from many intricately interconnected components working together as a self-organizing system. Thelen and Smith insist that the person's environment must be considered part of that system.

THE ROLE OF CONTEXT. Traditionally, motor development is thought to be a function of neurological growth. In other words, infants develop new skills because their brains mature. Thelen and Smith, using a great deal of experimental evidence, demonstrate that motor development may be complex in ways which consign this linear, top-down model -- and the entire "nature or nurture" dichotomy from which it springs -- to the scientific scrapyard.

They propose that new movement patterns emerge in an ongoing feedback loop fueled by perception, action, the physiological characteristics of the organism, and the properties of the environment. The infant grows physically, interacts with the world, and perceives by testing the characteristics of her body and immediate environment. All of these factors contribute to the infant's unique development. Context, then, is an inseparable part of the complex dynamic system that constitutes behavior. For Thelen and Smith, there is no essence of behavior or development apart from the total context in which it occurs, no heredity neatly separable from environment.

The authors demonstrate the role of context by analyzing the development of a number of motor and cognitive skills. For example, in 1986 Thelen conducted an experiment in which she supported 7-month old infants on a treadmill. Surprisingly, these infants alternated their feet and walked in a manner similar to adults. The change in context provided by Thelen allowed these infants to walk long before they were thought to be neurologically ready.

Ultimately Thelen and Smith extend their experiential explanation of growth and change to encompass the development of abstract thinking, which they view not as the unveiling of Plato's innate ideas or the attainment of Descartes' pure logic, but as "realized in the detailed activity of perceiving and acting in real time." (p. 232)

IMPLICATIONS FOR UNDERSTANDING AUTISM
All theories of autism are based on certain presumptions about the nature of human development and learning. A theory that challenges some fundamental tenets of human development must necessarily challenge theories about autism. Although Thelen and Smith do not mention autism, their view has enormous implications for our theoretical understanding, our techniques for providing support and education, and our research methods.

THEORETICAL IMPLICATIONS. Proponents of various theories of autism often focus on single primary deficits. In doing so, they fail to recognize what Thelen and Smith call the multicausal nature of development. For example, autism is frequently attributed to specific neurological deficits in executive functioning and to a deficient theory of mind. Baron-Cohen and Swettenham (1997) suggest a possible common origin for these deficits in a pathology of the frontal cortex.

Thelen and Smith question the existence of a hypothesized "executive" as a separate and distinct function. They also claim that "invoking the frontal lobe as the cause of behavior does not explain anything." (p. 308). They would argue that if persons with autism have frontal lobes that are atypical, it would be far more productive to explore what it is about their systems' dynamic history that created a cascade of physiological and developmental differences rather than explain these differences as caused or driven by the atypical frontal lobe.

Thelen and Smith collapse cognition, perception, and action into a single phenomenon. In doing so they make theories of primary deficit in autism seem irrelevant. Proponents of these primary deficit theories "seek the essence of a system in a unique and privileged component of the system" (p. 49) (i.e. theory of mind, executive functioning, affect). Thelen and Smith consider this to be reductionist. From a dynamic systems perspective developmental differences emerge as the result of complex interaction among many component parts. Viewed as a dynamic system, a person's behavior is the product of biology, perceptions, actions, unique history, and environmental demands.

SUPPORT AND EDUCATION. According to Thelen and Smith, the infant explores the world by creating multisensory and movement maps through ongoing perception and action. Many researchers now believe that people with autism have physiological difficulties with both perception and movement. Difficulties with motor planning and sensory processing, in particular, are frequently noted. Unfortunately, few current approaches to the education of persons with autism systematically examine how these differences, in combination, may affect learning. Stanley Greenspan and Serena Wieder's (1997) "floor-time" approach is a notable exception.

Thelen and Smith examine how people develop a wide variety of both stable and flexible behavior patterns. Again, this variety of behavior patterns emerges as a person perceives and acts in real time. Persons with autism often seem to have difficulty with more flexible behavior, especially in social interaction. By understanding how differences in perception and movement affect both behavior and development, we may learn how to help individuals learn to interact in more flexible and spontaneous ways.

Dynamic systems theory may also help us understand the important role of context in education. Creating the right context is often essential if a person with autism is to demonstrate competence. Some aspects of context may be more significant than others. As Thelen and Smith (p. 217) explain, "Contextual factors that should matter most are those that significantly alter the patterns of perceiving and acting." Factors that seem to fall into this category include the supports provided in facilitated communication and the individualized accommodations described by Anne Donnellan and Martha Leary (1995).

Dynamic systems theory also has implications for the way we support people with challenging behavior. It can be frightening when a person with autism moves from the safety and predictability of a stable behavior pattern to a "chaotic" one. From a dynamic systems perspective, however, system instability or chaos is necessary for growth and development.

In an article summarizing her views, Thelen (1995) says, "Times of instability are essential to give the system flexibility to select adaptive activities." Maybe we need to look at how to support individuals in these chaotic periods as they select from emerging alternatives. New stable patterns, first explored in these difficult times, may ultimately lead to more flexible and successful interaction. A dynamic systems approach emphasizes the need for a system to find its own solution, rather than to have a certain behavioral pattern imposed upon it by force or ingrained in it by sheer repetition, without regard to its meaningfulness or developmental appropriateness within the current state of that system. Supporting a person with challenging behavior as she finds her own solutions may be the essence of positive supports.

Challenging behavior is not limited to "chaos" and "instability." People with autism often get stuck in very stable patterns that can be destructive to themselves or others. From a dynamic systems perspective these difficulties can be best understood by knowing the history and complex dynamics of the behavior. Thelen's (1995) discussion of growth and the disruption of system dynamics may be applicable here:

"For developmentalists interested in providing effective and appropriate intervention for children who are at physical, emotional, or social risk, knowing that a particular trait is 25% inheritable is of little use. Instead, the therapist needs to know the history of the system in all its richness and complexity, its current dynamics, and how the interventions can disrupt the current dynamics to allow new and better solutions to emerge." (italics added)

RESEARCH. Typically researchers studying development in autism focus on deficits and differences. They test the skills of a group of persons with autism and compare their scores with those of chronological age and mental age matched controls. This may help researchers understand the ways in which people with autism might be unique or different. It tells them little, however, about the developmental process itself. In contrast Thelen and Smith are most interested in the dynamic and historical process of development -- the system's intrinsic dynamics. They advocate a longitudinal approach to research, in which individuals are observed over time. This kind of research is very complex and involves studying the interaction of many factors affecting development.

Instead of looking at how people with autism are different or deficient, dynamic systems research would look at the unique patterns and dynamics of their development. Instead of drawing up DSM- style trait lists, which continue to suggest that some essence of defective "autistic behavior" is scripted in the brain, it would look upon shared traits as convergences in the behavior of people whose development has followed common pathways -- pathways which deserve careful investigation, since they are not necessarily "carved in stone."

A Dynamic Systems Approach to the Development of Cognition and Action is not an easy read. It is complex and, in some places, almost impenetrable. The authors analyze a great deal of scientific data. Fortunately, Thelen and Smith frequently reiterate their most important themes, always relating experimental details and analysis to the larger picture.

Thelen summarized her ideas in 1995 in a relatively short article entitled "Motor development: A new synthesis." I found this article to be a very good general introduction to Thelen and Smith's ideas. The article helped me keep the larger picture in mind.

I believe anyone attempting to read this book will find that it has incredible implications for understanding autism -- implications only hinted at in this review. The authors see development as a dynamic, interactive, and self-organizing process and not as genetically or structurally predetermined. Development proceeds for everyone in an open-ended fashion, with environmental context playing an important role. From this perspective we might begin thinking of autism not as a thing or a condition but as many ways of adapting to and interacting with the world.

REFERENCES

Baron-Cohen, S. and Swettenham (1997). "Theory of mind in autism: Its relationship to executive function and central coherence." In D.J. Cohen and F.R. Volkman (Eds.), Handbook of Autism and Pervasive Developmental Disorders - Second edition. (pp. 880-893). New York: John Wiley & Sons.

Donnellan, A. and Leary, M. Movement differences and diversity in autism/mental retardation: Appreciating and accommodating people with communication and behavior challenges. Madison: DRI Press.

Greenspan, S. and Weider, S. (1997). "Developmental patterns and outcomes in infants and children with disorders in relating and communicating: A chart review of 200 cases of children with autistic spectrum diagnoses." The Journal of Developmental and Learning Disorders, 1, 87-141.

Thelen, E. (1995). "Motor Development: A new synthesis." American Psychologist, 50, 79-95.

Autism Through the Lifespan
by David L. Holmes, EdD
1998: Woodbine House. ($21.95)

Anthropologist and philosopher Gregory Bateson once observed that "There is an ecology of bad ideas, just as there is an ecology of weeds, and it is characteristic of the system that basic error propagates itself. It branches out like a rooted parasite through the tissues of life..." (1972, p. 484) Indeed, certain bad ideas seem to spread through disabilities systems like a contagion, until at last their germ is captured in a way that makes inoculation possible.

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.

JUST PUBLISHED: June 1998!
A family story to treasure and to share

A Slant of Sun: One Child's Courage
by Beth Kephart.
1998: W. W. Norton & Company. ($23)

Reviewed by Joan Bergquist

Pigeonholing A Slant of Sun as a "special needs" book would miss the essence of a remarkable story. True, it tells how one particular family overcame the tough challenges that came with a diagnosis of Pervasive Develop-mental Disorder for their beautiful, obviously bright but baffling two year old. However, this book is really about the enticing power of a relationship and how a relationship is built from love, effort, courage, and creativity. Like Dr. Ralph Maurer's analogy of the perceptive Arthur Murray dance instructor who intuitively synchronizes rhythms and makes it possible for an awkward person to dance, Jeremy's mother elicits his desire to try, again and again, to be "like other kids."

Any parent of any child could profit from the examples of low tech, high touch ways to look for a child's strengths, set the stage for good experiences, or capitalize on any serendipitous teachable moments. The Stanley Greenspan technique of opening and closing circles of communication, or repeatedly entering a child's idiosyncratic world to cajole him into wanting and being able to enter our larger world, is what Jeremy's mother has done in her own intensely loving way. The results are astounding. Along with the kindness and encouragement of a series of extraordinary "ordinary" people who were willing to make room for Jeremy, she has helped him want to join in the dance of human relationships.

Jeremy is still quite young, still learning, still eager to learn because, luckily for him, his mother recognized that a child is more than a labeled disorder, that one size doesn't fit all, that "experts" don't "fix" kids. Ultimately, Jeremy's story eloquently tells us all about "what love and kindness and waiting for a child to finish his sentences can do."

Family Writes of Roots and (Dragon) Wings

In recent years, more and more families are compiling their tales of living and learning with a family member who has autism. One of the latest of these chronicles, Dancing With Dragons, has been penned by the large (seven siblings, many now with spouses) Mialaret family of Louisiana.

Father Gerard Mialaret is well known in autism advocacy circles as an untiring organizer and advocate "from way back." His friends will be pleased, though not surprised, to hear that son Stephen is now living in his own apartment and working to manufacture boxes at a computer firm. As Gerry explains it, he and his wife Ida raised all of their children with a philosophy of "Roots and Wings" -- strong foundations in family and community, but with an expectation of maximum independence, maturity, and self-reliance.

Gerry shares not only the parenting strengths and competencies he has learned, but the all-too-familiar struggle to move beyond anger at the unfairness of life, of the system, and of "injustices of the past," to a level of wisdom allowing him to focus his energies and appreciate where he is. His "Top Ten List of Unaccepted Issues About Life with a Child with a Disability" includes "The work is never finished, we are on a journey without end" and, perhaps in answer, "We cannot do this alone; we must have outside help."

To gain that outside help, the Mialaret family has obviously engaged in many complex dances with the dragons of the title, who represent professionals and experts of various stripes. With a pointed classification system ranging from Dragon Pontificus to Dragon Technocratus, Gerry bursts a few overinflated bubbles ("Steve has had an IEP, ITP, IHP, IWP, ISP, and this guy wants another plan. When Steve dies, will he be buried like a regular person or will he be required to have an Individualized Burial Plan?") but also offers advice on how to humor, befriend, and partner with those who are willing to attempt our own unique, improvisational dance.

"Dancing With Dragons,: by Gerard Mialaret and Family, is $19.95 (plus $6 s/h) from Future Horizons, Inc. of 422 E. Lamar Blvd., Suite 106 Arlington TX 76011, TEL 800-489-0727.

COMMUNITY LIVING IN THE NEWS

WEST COAST REPORT:
Community Crisis or Community Attack?
By Jeff Strully, Jay Nolan Community Services (Los Angeles)

There has been a series of newspaper articles in the Orange County Register, Los Angeles Times and Sacramento Bee (just to name a few) indicating significant problems in community programs for people with developmental disabilities. The problems range from poor health care, to abuse, lack of support, mismanagement of the regional center system (local planning authorities responsible for eligibility, case management, funding, and planning), etc.

In addition to these newspaper articles, a recent visit by HFCA (Health Care Financing Administration) identified many similar problems with the community system and specifically with the implementation of the Medicaid Waiver program. The federal Government indicated to California that it would not approve the Medicaid waiver extension and placed California on no more than two 90-day extensions to correct deficiencies in the program.

Finally the David Strauss report (determining mortality figures of people in and out of the institutions) is getting significant play both in and out of state. The Department of Developmental Services is conducting their own analysis, which is challenging the Strauss report. The report basically states (whether appropriately or not) that people in the community have a higher death rate than people in the institutions and hence, there are problems with health and mental health care for people who are living in the community.

So, what does all this mean? Is the community under attack by news-paper reporters trying only to secure a Pulitzer Prize? Are certain advocacy groups and unions only wanting to keep institutions alive?

Well, the answer is probably yes to both of the above questions. However, if those of us who support appropriate community assistance so that all people can live valued lives in the community take a serious look at what is happening in California, we will come to the conclusion that there is merit in the identification of many of these problems. That is not to say that people with autism and other developmental disabil-ities should live in either large or small institutions, but it is time for all of us to stand up and be truthful about what is or isn't happening in the community.

Let's be honest, most community services for people with autism and other developmental disabilities are segregated, congregated, and are based on the principle of "how do we fix people" or "how do these people earn their way out to a good life." Community programs (group homes, day programs, facility-based family support programs, self-contained classes and schools, and the like) continue to be the predominant model of service delivery. These models are based on the continuum thinking where people with autism and other developmental disabilities must earn their way to freedom, where agencies and professionals are in control of people's lives.

When alternatives are provided -- supported living, supported employment, personalized day support, etc. -- many of these fine sounding programs are still firmly entrenched in old ways of thinking even though they have new names and politically correct labels. Many supported living agencies in California still do not allow people with autism and other developmental disabilities to control who the people are who support them, or how support is configured. Many of these agencies believe that having two or three people with autism and other developmental disabilities living together is supported living. It is not!

That is not to say that there are not many fine examples of excellent agencies supporting people with autism and other developmental disabilities to live in their own homes with the support they want and provided by the people they want the support provided by. There are many fine examples of people with autism and other developmental disabilities working in real jobs, not just fast food, janitorial and nursery options. There are many fine examples of wonderful family friendly agencies listening and supporting families to not just live but to flourish together. However, all of these are the exceptions, not the rule of thumb.

Now is the time for people with autism and other developmental disabilities, their families, friends, allies, and supporters to demand excellence. To demand control and power over the resources that people receive. Until people with autism and other developmental disabilities as well as their families (under certain circumstances) have the control and power to help think about, plan for, and figure out how to deliver individualized and personalized support so that all people can live rich and decent lives, none of us should be celebrating the way we are currently providing community support to people today.

If there is a lesson in the California experience it is to learn what isn't working and then to advocate not for cosmetic changes (which is what California is going to do), but to create changes which will matter. We know what matters in people's lives and now is the time to speak up and demand the quality support people need and deserve.

STRAUSS REPORT REVISITED:
An Expert Rebuttal

"It has come to our attention that the San Francisco Chronicle is being considered for a Pulitzer Prize, based on their series of articles on mental retardation and mortality. In our view, the series represents a poor example of investigative reporting and has done a disservice to readers by presenting a very narrow perspective of the issues on this important topic. The articles show no evidence that (Chronicle reporters) Lempinen and Holding considered the prior research in this area, which has been conducted for over thirty years by qualified investigators that do not include those showcased in the Chronicle series.

Had the journalists relied on more than the data, issues, and conclusions drawn by statistician David Strauss, they would have been less likely to reduce complex issues to a simple argument.... Drawing conclusions about the effects of placement on mortality rates is extremely difficult because we know that people with mental retardation are not randomly assigned to institutions or health facilities in the community. They are placed in institutions or communities because of family preferences, available options, past histories, specific medical conditions, etc....when comparing rates across settings, one must be able to say that the people in both settings were equally at risk of dying. The data that we, and Dr. Strauss, have used to examine influences on mortality, are not sufficiently detailed in terms of health status to tell us whether this is the case....

....Chronicle readers might be surprised to find out that avoidable deaths have also occurred in institutions. The Chronicle stories say nothing about whether the statistical evidence is sufficient to justify a moratorium on community placements. But, the articles do much to instill fear in parents and relatives about living in the community. If the Chronicle had also reported a tragic story of two deaths occurring in institutions, would we then decide that neither the community nor institutions provide adequate care? We doubt it.

....Valid reasons exist for parents wanting their children to remain in one setting or another, but it is wrong to suggest, as we think the Chronicle articles do, that the placement debate should be centered primarily on issues related to mortality. Further, it is wrong to suggest that the findings of these studies are definitive or that differences in mortality rates are due to quality of care. Publicity that misleads parents or scares them unnecessarily is dangerous."

-- excerpted from "Perspectives on the University of California Riverside Mortality Research" by three research team members: Sharon Borthwick-Duffy, U.C. Riverside Professor of Education, Co-Principal Investigator, Life Expectancy Studies; Keith F. Widaman, PhD, U.C. Riverside Professor of Psychology, Investigator, Life Expectancy Studies; Professor Herbert J. Grossman, M.D., University of Michigan Department of Pediatrics, Neurology, and Psychiatry, Investigator, Life Expectancy Studies.

LITERARY SUBMISSIONS BY OUR MEMBERS

Young Poet Gives Voice to His Experience

An unpublished collection of poems arrived at the Autism National Committee's office shortly after the death of Dr. Herb Lovett. By a wonderful serendipity, they seemed to address many of the feelings and values implicit in the life's work of our first president. These poems had been written as a portfolio for a Seminar in Poetry Writing at Albertus Magnus College by Michael O'Reilly and dedicated to his advocate and facilitator, Sarah Murray.

Michael O'Reilly is a 21-year old writer with autism who lives in Guilford, CT, with his family. In the last few years, using facilitated communication, Michael has discovered that writing poems provides an outlet and a method for dealing with his journey through the very unique world of autism. Recently he has been delving into first person nonfiction narrative and play scripts based on his own life. With Mr. O'Reilly's permission, we will print selections from his works in this and future newsletters.

LANDING ON EARTH
By Michael O'Reilly

I decided to
tell my story
of the
uneraseable beginnings
when
I was composed.
Like an angular
piece of music
my entry into
this earth
sang of
awaited expectations
and critical reviews.

In my infant/child mind
I agonized
and contemplated
how my presence
would affect
every single soul
I encountered.

What could
I give them
out of this
repulsive
autistic material?

I bring a truth
an honesty
to self-examination.
One cannot
be with me
and not look
at oneself
in glaring,
painful, joyful
clarity.

I offer a pure
unfettered soul,
that normalcy
has not conquered.
I give a love
from my heart
that is
so enormous
it would explode
if the muscles
of polite
restriction
were not
binding it
together.
I was born
to be
an unusual human,
and experience
thus far
has proven
that this is so.

The questions
of the little boy
abound
in the man.

I have landed
on earth
to be myself
and
to live in
the rhythm
and lyrics
of my uniqueness.

AUTISM NATIONAL COMMITTEE MEMBERSHIP

Are YOU among our AUTCOM members?
AUTCOM recently moved its membership office and reconfigured its computerized database. If you wish to take out a membership, or if you have any queries concerning your membership, please contact: Max Lapertosa, Esq., AUTCOM Membership Chair, 430 S. Burnside #5G, Los Angeles, CA 90036

AUTCOM BOARD NEWS

Congratulations, Sue Pratt!

AUTCOM Board Member Sue Pratt, Retiring Executive Director of Citizen's Alliance to Uphold Special Education (CAUSE), has been honored with the Power of One Award from the Physically Impaired Association of Michigan. Pratt, the mother of an adult son with autism, has devoted her life to advocating for him and others.

Trained as a teacher and ultimately acquiring a Master's Degree in Education Administration and Child Growth and Development, she served as the president of the Michigan Society for Autistic Citizens and as the president of the Autism Society of America before going on to help found the Autism National Committee. She has demonstrated to parents nationwide the power that one focused person can bring to our work.

TRIBUTES TO HERB LOVETT
IN MEMORIAM
Herbert Lovett, PhD
August 27, 1949 - March 21, 1998

Herbert Lovett, PhD, of Boston, a revered leader, scholar, teacher, and advocate for people with disabilities and their families, and a friend to many, died in an automobile accident Saturday morning. He was 48. His death has brought an outpouring of grief and condolences from around the world.

Born in Boston, Dr. Lovett attended Bowdoin College where he studied the classics, Yale University where he studied music theory, Harvard University where he studied education, and the University of Rhode Island where he received a PhD in Clinical Psychology. He worked to promote inclusive supports in and equal access to education, work, housing, and human rights for children and adults with disabilities. He was the co-founder and past president of the Autism National Committee, was a faculty member at the University of New Hampshire, and traveled throughout the United States and the world as a consultant who helped to bring about fundamental changes in the way people with behavioral difficulties are viewed and treated. In the U.S., he worked with national and state leaders to develop public policy, legislation, regulations, and practice that outlawed the use of aversive procedures in favor of respectful, decent, and positive supports. He served on the Joint Commission on International Aspects of Mental Retardation of the World Health Organization since 1991; was an Advisor to People First of Ontario; and worked with other self-advocates and family groups around the world. One of Herb's greatest contributions was to listen, give encouragement, and recognition to others. He was a lovely blend of intellect and heart, and had the unique gift of being a friend and colleague to so many people. Dr. Lovett waged an intensive battle against the Behavioral Research Institute (BRI), now the Judge Rotenberg Center, to stop the use of punishment and aversive procedures with people who had autism and people with difficult behaviors. His two books, entitled Cognitive Counseling for Persons with Special Needs (1985) and Learning to Listen: Positive Approaches and People with Difficult Behavior (1996) are best-sellers and instrumental in the creation of an international movement that advocates for the use of positive behavioral supports. His courage and unwillingness to yield to relentless political pressure on these important topics will continue to inspire his colleagues in the field of disability rights.

Herb was also a musician, a writer, and a community activist. He lived in South Boston, where he opened his and Michael's home -- a place filled with music, great books, and his three dogs -- to friends, family, and people who needed a place to stay. He is survived by artist Michael Dowling, his partner of 20 years; his godsons John Arico, Joe Feinman, Matthew Goreham; his nieces Ruth Lovett, and Sarah, Rachel, and Rebecca Goreham; his nephew Bruce Lovett; his sister Ruth Arico of Saugus; his brother Bruce Lovett of Sabattus, Me.; his parents Ruth and Herb Lovett of Leeds, Me.; the extended Dowling family; and thousands of friends and colleagues who already feel a terrible sense of loss. Herbert Lovett was a kind and wonderful person who will be remembered for his humanity, generosity, humility, and wicked humor.

Private funeral services were held at the Crematorium at Forest Hills Cemetery. Donations can be made to
the Herb Lovett Memorial Fund, c/o Barbara Cutler, 7 Teresa Circle, Arlington, MA 02174.
(Reprinted from The Boston Herald)

A Memorial Service was held at the Boston Center for the Arts from 2:00 p.m. on Saturday, April 18 until 2:00 p.m. Sunday, April 19. Under the direction of Michael Dowling, an enormous contingent of Herb's friends -- some arriving from as far as California and England -- built a ceremonial structure called a Medicine Wheel in the center of the building. Since Herb represented healing medicine to so many, this way of remembering him and beginning to heal from his loss gave form and meaning to the day.

Entering with a processional, consecration, and dedication, participants carried in items of significance to Herb's life and legacy, placing them on and around the pillars outlining the wheel. Bouquets of Herb's favorite flowers, purple iris, were abundant, as were candles lit to outline the circle. The singing of the Agnus Dei from a Requiem Mass which Herb himself composed in 1980 preceded a time of reflections, reminiscences, and a feast of shared food. Many participants remained overnight to sleep in the circle and maintain their meditative vigil. Sunday morning commenced with chanting by the monks of the Cambridge Zen Center. Kaddish was later recited. Intense reflection and conversation continued until the 24-hour cycle of the wheel was closed with a recessional. As the day's program reminded us:

Time is
Love is
Death is
And the wheel turns,
And the Wheel turns,
And we are bound to the wheel.

This statement by Rob Cutler was read during Herb's Memorial Service by Michael Dowling:

I am writing this for everyone to hear. We all lost a friend, Herb Lovett, due to a car crash. He was a loving son to his parents and a great uncle to his nieces and nephews. Also a special companion to Michael.

What was Herb to me? The answer lies in my heart and soul. Last december at TASH, I typed that Herb would take over Gunnar's role in fighting for the rights of people in group homes and institutions.

What I did not realize was Herb would be in heaven helping those people who died needlessly in institutions in heaven. Herb's life needs to live in our hearts and souls. Here, today, we all take a stand, that no longer will suffering be allowed! No more, no more!

I want everyone to know Herb loved everyone. He is now an angel in God's army. His job is to help in deciding what behaviorists get to heaven or end up in hell.

Herb is going to many operas in heaven. His days are spent reading poetry and his nights are filled with music. In ending I want Michael to know that Herb still loves you and God told him it was okay. Herb wants you, Michael, to build a memorial for the thousands of people who are still in institutions. You must build this with your own hands.

-- Rob Cutler, AUTCOM Vice President

Herb touched our lives in such significant ways. Bob, Ben, Jesse, and I learned so much, benefitted so much, and enjoyed so much when we were with Herb. His wit, intellect, his humanity are (I still cannot speak or think of Herb in the past tense) his legacy for all of us. When Bob heard the news of Herb's death, he turned to Herb's books. He read and reread them. He is continuing to do that. As we drove with a friend to the Medicine Wheel celebration in Boston, we shared stories, memories, and feelings. We each will have to find our own way to heal. For me, this will mean listening harder for Herb's messages in my own actions. I will remember these words, "...give them the freedom of choice, the dignity of risk...My business is not to control lives...The point is to give her the experience of making her own decisions." As I reflect on times spent with Herb, I appreciate how he did this. It is not easy, but this is Herb's message for me.

Thanks, Herb.
-- Sue Lehr, AUTCOM President

My tribute to Herb can be partially expressed in this Haiku poem by Basho:
Unknowingly he
Guided us
Over pathless hills
With wisps of hay

Herb led us along new paths of caring and appreciation for all those who have been destined to be created in any manner different from the majority. We must continue on, for that will be our greatest tribute to his memory.
-- Ted Eckberg, past president of AUTCOM

Like so many other people who knew Herb, I was devastated by the news of his death. As I write this I still cannot believe that I will not be met by one of his trademark friendly barbs at a conference. I will not have someone to e-mail my latest concerns to. A voice that I valued and relied on is gone.

I remember inviting Herb to come to the program that I ran at the University of Maryland to speak to the people who ran a behavior support program. I was immediately struck by the common sense eloquence of his message and I loved his humor.

At the next TASH conference I wanted to be sure to hear more of what he had to say. The room in which he was speaking was packed with a rapt audience. His talk was caring, insightful, and clever, but there was something else. It became clear that those present saw him as a healer, as much shaman as psychologist. People initially sought his assistance in the healing of those who received services from the disability system, but often wanted more of this time because his presence helped them in healing themselves.
-- Michael Smull, past member of AUTCOM's Board

My friend, Herb Lovett, was a great fighter for people with disabilities and autism. He truly cared about us and our rights and did everything he could to ensure that we would have the same rights as everybody else -- that is, life, liberty, and the pursuit of happiness.

Not only that, but I know he'd been to England a few times trying to get Amnesty International to recognize on their human rights agenda the abuse that people with developmental disabilities get by aversives. Hopefully, God willing, Amnesty International will take up the cause and see people with developmental disabilities as political prisoners due to the abusive treatment they receive in the name of medical treatment. Herb will be remembered for all the good that he's done and hopefully we will honor his work by furthering the causes that he cherished so much in his life. Memory eternal, memory eternal, memory eternal.
-- Kathy Lissner-Grant, past vice president of AUTCOM

The uncanny thing about encounters with Herb was this: Each person took from their own encounter an insight they had been struggling for, and desperately needed. Mine was the solution to an ancient conundrum: I now know what was meant by Heraclitus' insistence that "You can never go down to the same river twice."

Therein lies the key to why labels become lead weights, why "model programs" become brick walls, and why the road to hell (which leads in the opposite direction from the river) is paved with a continuum of pre-molded and neatly cemented plans for today and tomorrow. Herb understood -- no, exemplified -- the human imperative for freedom, change, surprise, reversing course, overthrowing idols, slipping on banana peels, thumbing noses, and floating along in inner tubes just because it's a beautiful day.

Now we'll go down to the river without Herb, and it will be different, and we will be different, and the people we are striving to support will be different. We definitely will not invent The Lovett Model to deal with that. And that's how we'll know that we've really "gotten it."
-- Pat Amos, past president of AUTCOM

Marsha Forest and Jack Pearpoint hereby announce the establishment of the HERB LOVETT SCHOLARSHIP to their annual Toronto Summer Leadership Institute, of which Herb was a member of the teaching staff.

For the continuation of Dr. Lovett's work, contributions may be made to the HERB LOVETT MEMORIAL FUND c/o Barbara Cutler, 7 Teresa Circle, Arlington, MA 02174.

Remembering Herb Lovett
IN HIS OWN WORDS.....

"Just as we have forced people from general society with the blunt instrument of intelligence testing and robbed them of ordinary consideration, we have also taken people's behavior out of their social and personal contexts by labeling them as well....When we don't love people or take them seriously, we tend simplistically to dismiss their motivations. I have long been fascinated by the phenomenon of how I am good at managing my money, you are a little tight with a buck, but he makes Scrooge look like Santa Claus." (p. 47)

"One of the most important lessons of behavioral thinking is the power of environments to teach. Hurting people to control their behavior necessarily takes place in highly authoritarian settings. How often do our human services ask the simple human question: How can we help this person live where she is loved and have access to the people and things she herself loves? Instead, we generally demand that people demonstrate ordinary behavior as a prerequisite, not for a life that looks to their satisfaction and happiness, but for the simple absence of pain. This irrationality defies all logic, and an error of logic and rationality is fatal to behaviorism, which has been aggressively anti-emotional and overly dependent on empiricism. The use of pain betrays its own bedrock perception: If environment is the great teacher and people are given violent environments, how in the world can they be expected not to be aggressive and self-injurious? The use of pain to control people has become both morally and intellectually bankrupt." (p. 175)

"The danger of thinking behaviorally about people is that we focus on the behavior of others and not our own. Even when we ask why a person acts in a certain way we are led to trivial and demeaning reasons -- attention and compliance, for example. Behavior modification never asks, `How does this behavior make the therapist feel?'" (p. 222)

"The issues of choice and power have been something of a rhetorical touchstone for many of us working for people with disabilities... We are still learning how institutional, paternalistic, and hierarchical traditions do not transplant in genuine community settings." (p. 232)

"Positive approaches are about behavior changes through personal growth and mutual responsiveness. This work starts with each person and each group, and as experiences widen and deepen some principles emerge, but they emerge from the lives of the people involved, and are not imported mechanically.... What they truly are intended to be is a way of keeping people present as individuals in our minds and hearts." (p. 233)

-- Excerpted from Learning to Listen (1996: Brookes Publishing)

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