To The Autism Spectrum A PHAT APPROACH.

To The Autism Spectrum A PHAT APPROACH

With special thanks to his original habilitation team
Author Merlin L. Taylor, Jr. Assistant Professor Department of Communication Disorders Truman State University Wishes also to thank Dr. Elwood Anderson Ms. Kara Budde Dr. Patricia Burton Rev. John Dungan Dr. Janet Gooch Dr. Temple Grandin Ms. Sue Hale Ms. Marion Hammett Dr. Joyce Harris Mr. Philip Hewitt Dr. Andy Hilgartner Ms. Connie Ikerd Dr. Jennifer Jesse Dr. Alan Kamhi Dr. Jill McConnell Dr. Sam Minner Dr. Mary Pat Moeller Ms. Jennifer McIlwee Myers Ms. Erin Nance Dr. Donna Neff Mr. Troy Paino Ms. Andrea Richards Ms. Sharon Roehrig Mr. Arlan Rolfsen Mr. Jonathan Rolfsen Ms. Ingrid Schoenburg Mr. Michael Tufte Mr. Clair Weldon Ms. Thamar Taylor Ms. Sallie Hillard Mr. James Thorn With special thanks to his original habilitation team Merlin L. Taylor, Sr. Juliet A. Taylor Glendon Taylor Laana Taylor Julie Smith La Verne King Hilda Taylor Lawrence Taylor Leola Parker Albert Parker Dolores Gautier Dr. Harland Randolph ACKNOWLEDGEMENTS

A QUESTION OF NAVIGATION
Graphic Allegory A QUESTION OF NAVIGATION

A QUESTION OF NAVIGATION
SEA OF PROMISE INDIFFERENTIA DEPRESSIA ? BAY OF APATHY OPPRESSIA SEA OF FRUSTRATION XENOPHOBIA

WHAT COMES TO MIND WHEN YOU HEAR OR SEE THE WORD SPECTRUM?

DEFINING SPECTRUM a broad range of varied but related ideas or objects, the individual features of which tend to overlap so as to form a continuous series or sequence spectrum. (n.d.). Dictionary.com Unabridged. Retrieved February 22, 2010, from Dictionary.com website: a continuous sequence or range spectrum. (n.d.). Merriam-Webster's Medical Dictionary. Retrieved February 22, 2010, from Dictionary.com website: In considering only the atypical ranges of a continuum of naturally occurring phenomena, are we able to perceive the full spectrum?

WHAT DO I MEAN WHEN I SAY “WE”?
By “we,” I might mean People who live on the autism spectrum (of which I am one) People who are interested in the autism spectrum (of which I am one) People who practice a healthcare profession (of which I am one) People (of which I am one) Simple enough?

Simple…yep, that’s us. ?

A POPULAR OXYMORON? “Simply human”

HUMANITY REWORKING THE PUZZLE
HUMANKIND IS A PUZZLE—A PUZZLE TO BE PIECED TOGETHER IN ABSENCE OF ANY CERTAIN DEPICTION OF THE FINISHED WHOLE. WE WHO LIVE ON THE AUTISM SPECTRUM COMPRISE A SUBSET OR SECTION OF THAT PUZZLE—ALBEIT A UNIQUELY CHALLENGING SECTION. THE FOREMOST SIGNIFICANCE OF ANY PUZZLE SECTION IS IN ITS RELATIONSHIP TO THE FINISHED WHOLE—ERGO, IN THE PROCESS OF UNDERSTANDING AUTISM, HUMANITY AS A WHOLE MUST BECOME BETTER UNDERSTOOD. IN ALL OF THE LABOR SUGGESTED ABOVE, SIMPLICITY—HOWEVER DESIRABLE THE IDEA—IS NOT A REALISTIC EXPECTATION. A MORE REALISTIC OBJECTIVE IS TO MINIMIZE UNNECESSARY COMPLEXITY. HUMANITY REWORKING THE PUZZLE

SPECTRUM OF HUMANITY

Three Essential Functions of Self (Taylor and Randolph, 2005)
Self-Construction mental synthesis (the creation of a construct; the process of combining ideas into a congruous object of thought) The capacity to create such a construct of self seems peculiar to humankind—our humanity is very much our invention. Self-Actualization realization (making real or giving the appearance of reality) making the internal reality of self an external reality Self-Conservation preservation (…preventing loss or injury or other change)

Explaining the Metaphor
Three essential functions of self Self-construction Self-actualization Self-conservation Typically are integrated, each function facilitating the others Comprise a basis for typical human behavior patterns (not unlike the various wavelengths comprising a beam of white light) In cases of autism, typically integrated patterns break down AUTISM IS A PRISM THROUGH WHICH ONE CAN VIEW THE SPECTRUM OF HUMANITY

A QUESTION OF NAVIGATION—REVISITED
SEA OF PROMISE (self-actualization) INDIFFERENTIA (hyperindividualistic culture) DEPRESSIA ? BAY OF APATHY OPPRESSIA SEA OF FRUSTRATION (self-construction) XENOPHOBIA (hypoindividualistic culture) = POTENTIAL SELF-DESTRUCTION ? = CONSTRUCTIVE TRANSITION

FURTHER Elaboration On THE THREE TASKS OF SELF IN CASES OF AUTISM
Self-conservation tends to take precedence over both self-construction and self-actualization—to the detriment of the latter two—in autism. Deficits in proprioception undermine self-construction by compromising awareness of self as a physical entity. proprioception (the ability to sense the position and location and orientation and movement of the body and its parts) Related deficits in exteroception cause essentially innocuous external stimuli to be perceived as noxious and/or threatening—compelling self-conservation. exteroception (sensitivity to stimuli originating outside of the body) Efforts at self-conservation actually can have the effect of self-destruction (anyone have a sharpened pencil?)

DIGRESSION: A Conversation with dr. grandin
In preparing this presentation, I benefitted from advice Temple Grandin gave me via telephone on 13 February 2010. Among other things, she warned me against trying to fit too much text on a single slide. (Believe me—or not—I did some editing as a result.) I asked her at one point if she thought that some of us who live on the spectrum and are highly verbal tend to get caught up in our own words. “Definitely,” she replied.

One need not HAVE ASPERGER SYNDROME, HOWEVER…
…to get caught up in one’s own words. In words declared to be “policy,” an entire nation can get caught up … …or even the entire world. Efforts at self-conservation that actually can have the effect of self-destruction— are these characteristic only of people on the autism spectrum? AUTISTIC BEHAVIOR IS ON A CONTINUUM WITH ALL OTHER HUMAN BEHAVIOR—INDIVIDUAL AND COLLECTIVE

phat Psychologically Humane Assessment and Treatment

P stands for PSYCHOLOGICALLY

A multidimensional—and clinical—perspective on mind
PSYCHOLOGY

Psychology—FUNDAMENTAL premise
psychology 1653, ‘study of the soul,’ probably coined mid-16c. in Germany by Melanchthon as Mod.L. psychologia, from Gk. psykhe- ‘breath, spirit, soul’ (see psyche) + logia ‘study of.’ Meaning ‘study of the mind’ first recorded 1748, from G. Wolff's Psychologia empirica (1732); main modern behavioral sense is from 1895. Any and all psychology presupposes existence of psyche (a.k.a. mind) The existence of mind is notoriously problematic

PSYCHOLOGY—MULTIDIMENSIONAL PERSPECTIVE
Mind is problematic inasmuch as it can be neither directly observed nor directly quantified However, if mind is central to determining how the individual human being acts, then the mind of the human being on the autism spectrum exists to be understood.

PSYCHOLOGY—MULTIDIMENSIONAL PERSPECTIVE (CONTD.)
While neither directly observable nor directly quantifiable, mind can be triangulated by means of directly observable and quantifiable phenomena— Nervous system activity Emotional response Social interaction

PSYCHOLOGY—MULTIDIMENSIONAL PERSPECTIVE (CONTD.)
Moreover, this process of triangulation… …logically necessitates a complementary (as opposed to contradictory) relationship between mind and body… …and accommodates the paradigm of impairment and disability adopted by the United Nations World Health Organization in 2000.

THE ICF "The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a classification of health and health-related domains. These domains are classified from body, individual and societal perspectives by means of two lists: a list of body functions and structure, and a list of domains of activity and participation. Since an individual’s functioning and disability occurs in a context, the ICF also includes a list of environmental factors...The ICF puts the notions of ‘health’ and ‘disability’ in a new light. It acknowledges that every human being can experience a decrement in health and thereby experience some degree of disability. Disability is not something that only happens to a minority of humanity...Furthermore ICF takes into account the social aspects of disability and does not see disability only as a 'medical' or 'biological' dysfunction." World Health Organization. (2010). Classification of Functioning, Disability and Health (ICF). Retrieved from Additional references American Speech-Language-Hearing Association. (2007). Scope of Practice in Speech-Language Pathology. Rockville, MD: Author. World Health Organization. (2001). International classification of functioning, disability and health. Geneva, Switzerland: Author.

THE ICF AND THE SLP In an interview with ICF Clearinghouse Newsletter (Retrieved 14 April 2010 from Travis Threats stated: "Speech by its definition does not occur in a vacuum. Therefore, the environment component is extremely critical..There needs to be someone on the receptive side for actual communication (interaction). In speech, people are important assistive aids...they listen and give clarification and feedback." (Dr. Threats, chair of the communicative sciences and disorders program at St. Louis University, served as ASHA representative to the World Health Organization in the development of the ICF.)

AUTISM—PRIMARY IMPAIRMENT
Atypical cerebral and cerebellar development patterns (1) undermine proprioception and (2) promote dysregulation throughout the central nervous system.

Couchesne, E. , Redcay, E. , and Kennedy, P. (2004)
Couchesne, E., Redcay, E., and Kennedy, P. (2004). The autistic brain: Birth through adulthood. Current Opinion in Neurology 17(4), Mehler, M.F., and Purpura, D.P. (2009). Autism, fever, epigenetics and the locus coeruleus. Brain Research Reviews 59(2), DOI: /j.brainresrev "...Recent studies have now shown that abnormal brain overgrowth occurs during the first 2 years of life in children with autism. By 2-4 years of age, the most deviant overgrowth is in cerebral, cerebellar, and limbic structures that underlie higher-order cognitive, social, emotional, and language functions…The resulting aberrant connectivity and dysfunction may lead to the development of autistic behaviors (p. 106)…“ Similar findings to those summarized above were reported in Courchesne, E. (2004). Brain development in autism: Early overgrowth followed by premature arrest of growth. Mental Retardation and Developmental Disabilities Research Reviews 10(2), DOI: /mrdd.20020 Mehler and Purpura concluded that while the brain might be structurally unremarkable in cases of autism, functioning is significantly atypical—”dysregulated”—and specified the locus coeruleus, an aggregation of brain stem neurons that process somasthetic inputs from throughout the body. PRIMARY IMPAIRMENT

SECONDARY IMPAIRMENTS
SIGNIFICANCE OF PROPRIOCEPTIVE DEFICITS “The ability to recognize visually one's own movement is important for motor control and, through attribution of agency, for social interactions. Agency of actions may be decided by comparisons of visual feedback, efferent signals, and proprioceptive inputs…We conclude that proprioception does contribute to the visual identification of ownership during active movements and, thus, to the sense of agency.” Balslev, D., Cole, J., Miall, R. (2007). Proprioception contributes to the sense of agency during visual observation of hand movements: Evidence from temporal judgments of action. Journal of Cognitive Neuroscience 19(9), (Damasio had reached conclusions similar to those above in a 2003 study.) Damasio, A. (2003). Feelings of emotion and the self. Annals of the New York Academy of Sciences 1001, DOI: /annals SIGNIFICANCE OF CHRONOMETRIC DISRUPTION "...Functional neuroimaging studies of perception, affect, memory, and metacognition have revealed how cognitive operations tend to require synchronized neuronal activation throughout the brain..." Taylor, M. (2006). Epileptiform activity and discontinuities in language acquisition. Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders 16(1), 4-11. PREDISPOSITION TOWARD ANXIETY "...Compared with a sample of 1751 community children, AS and autistic children demonstrated a greater rate of anxiety and depression problems. These problems had a significant impact on their overall adaptation (p. 117)..." Kim, J., Szatmari, P., Bryson, S., Streiner, D., and Wilson, F. (2000). The prevalence of anxiety and mood problems among children with autism and Asperger syndrome [Abstract]. Autism 4(2), (2000) DOI: /

AUTISM—SECONDARY IMPAIRMENT
Proprioceptive deficits undermine development of such capacities as sensory processing motor programming directed attention Dysregulation tends to undermine the chronometric function of the brain, to the profound detriment of cognition and language. Predisposition towards episodes of panic and seizure increases.

AUTISM—DISABILITY Given only tentative consciousness of many aspects of self-existence, and consequently impaired awareness of others’ existence, behaviors generally develop according to internal rather than external demands. Interactions with others therefore tend to be intrusive and destabilizing. This, in turn, exacerbates primary and secondary impairments.

ANY QUESTIONS AT THIS POINT?

H stands for HUMANE

"...There are many language based abstract concepts that I do not understand. To understand a concept I have to form a visual image in my imagination...Some philosophical writing is impossible for me to understand. Some of the words used in books about consciousness are so language based and abstract that I do not understand them. Words like 'percept' and 'mentalizing' make no sense to me. Even though I do not understand some language based concepts, I think I am truly conscious. I am a college professor and have designed equipment that is used by most of the large meat companies in the U.S. and Canada...(pp )" Grandin, T. (2002). Do animals and people with autism have true consciousness? Evolution and Cognition 8, "...Human children are legally not property. Legally, a major distinction between property and non property is that I can buy, modify, sell, give away or destroy items that I own..." Grandin, T. (2002). Animals are not things: A view on animal welfare based on neurological complexity. Accessed from 12 April 2010. Photo from HUMANITY

People on the autism spectrum— are we HUMAN yet?
NOT QUITE CERTAIN apparently certain “A surprising, shocking treatment helps far-gone mental cripples” Subtitle to the 1965 Life article “Screams, Slaps and Love” “To free an autistic child from his compulsion to self-mutilate…amounts to giving him his humanity…” Paul Chance in “Poet With A Cattle Prod: A Sketch of Ivar Lovaas.” Psychology Today, January 1974, p.78 ”$120,000 a year to institutionalize a person. The costs will be staggering if we don’t fix these kids now…” From vision statement explanation, July 2002 ICDRC Parent One Day Seminar, “Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one..” Jerry Kartzinel (2007, p. xvi) in Jenny McCarthy, Louder Than Words. New York: Dutton. “…If you treat these kids like patients, you are finished. The best thing you can do is treat them like people…” Lovaas in “When you hit a child, you just can’t get up and leave him; you are hooked to that kid.” P. Chance, Psychology Today, January 1974, p.79 “…Autism’s surface symptoms might thus be understood as the developmental reaction of a normal human mind to abnormal neural hardware.” Belmonte et al. (2004, p.6). Autism as a disorder of neural information processing: Directions for research and targets for therapy. Santa Monica, CA: Cure Autism Now., Inc. People on the autism spectrum— are we HUMAN yet?

AUTISM AND HUMANITY—GENETIC THEORY
BENIGN EUGENICS? MALIGNANT EUGENICS AUTISM AND HUMANITY—GENETIC THEORY

autism AND HUMANITY—psychoanalytic theory
Of the once-accepted clinical labels listed below, which most recently was in use? Idiot Imbecile Moron Refrigerator mother With whom did the concept behind the label originate? Bettelheim, B. (1967). The empty fortress. New York: The Free Press. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child 2,

autism AND HUMANITY—psychopharmacology
“Our conclusions were that LSD-25 given daily in oral doses of 100 mcg to prepuberty autistic schizophrenic children appears to be an effective autonomic and central nervous system stimulant…” Bender, L., Goldschmidt, L., and Siva, D. (1962). Treatment of autistic schizophrenic children with LSD-25 and UML-491. Recent Advances in Biological Psychiatry 4, “Comparatively large doses of LSD-25 and Sansert may be safely administered to autistic schizophrenic children for extended periods of time…Extension of this work all reported during the last decade offers new hope in the treatment of schizophrenic children.” Abramson, H.A. (1967). The use of LSD-25 in the therapy of children. Journal of Asthma Research 5,

autism AND HUMANITY— behavioral theory
? Grant, A. (1965, May 7). Screams, slaps and love. Life 58(18), 90A-95. Retrieved from .

autism AND HUMANITY— behavioral theory
Two years before Bettelheim published The Empty Fortress, Lovaas, rather than indicting parents as the problem, enlisted parents as part of a solution. “Instead of blaming the parents, excluding them from treatment, and alienating them from their children…parents become the principal therapists and we become consultants to the parents (p. 76).” Lovaas in “When you hit a child, you just can’t get up and leave him; you are hooked to that kid.” P. Chance, Psychology Today, January 1974. In 1987 (the same year, incidentally, that Bettelheim published a somewhat more parent-friendly treatise on autism), Lovaas published efficacy outcomes in the Journal of Consulting and Clinical Psychology. In 2005 and 2006, respectively, two different research teams published efficacy outcomes replicating Lovaas’ findings—in neither study with any use of aversive techniques. Successful social integration reported in 11 of 23 cases. Sallows, G.O., and Graupner, T.D. (2005). Intensive behavioral treatment for children with autism: Four-year outcome and predictors. American Journal on Mental Retardation 110(6), Successful social integration reported in 17 of 21 cases. Cohen, H., Amerine-Dickens, M., and Smith, T. (2006). Early intensive behavioral treatment: Replication of the UCLA model in a community setting. Journal of Developmental and Behavioral Pediatrics 27(2),

autism AND HUMANITY— AVERSIVE TECHNIQUES
"...Scoldings and stern shakings did nothing. Like many autistic children, Pamela simply did not have enough anxiety to be frightened. To give her something to be anxious about, she was taken to the shock room, where the floor is laced with metallic strips. Two electrodes were put on her bare back, and her shoes removed. When she resumed her habit of staring at her hand, Lovaas sent a mild jolt of current through the floor into her bare feet. It was harmless but uncomfortable. With instinctive cunning, Pamela sought to mollify Lovaas with hugs… …he insisted she go on with her reading lesson. She read for a while, then lapsed into a screaming fit. Lovaas, yelling 'No!', turned on the current. Pamela jumped and learned a new respect for 'No.'“ Grant, A. (1965, May 7). Screams, slaps and love. Life 58(18), 90A-95. Retrieved from ? ? ?

DIGRESSION: REST IN PEACE?
Clair E. Weldon—a.k.a. “Eddie Weldon,” “Mr. D.J. USA,” the “Panting Panther,” and the “Shooting Star of North America”—recorded and broadcasted under his various performance monikers throughout the 1950s and 1960s Under the moniker “Panting Panther” on a song titled “Cooler Weather,” Weldon became one of the first popular musicians to cross what then was known as the “color line,” singing with the backing of an African-American blues combo Today (as seen at right) he continues to work in entertainment, largely under the name “Eddie Weldon” A recording firm, having heard nothing of the “Panting Panther” in decades, re-released “Cooler Weather” on an anthology CD with liner notes describing the artists as intellectually inferior “white trash”—and with a somewhat bizarre cover photograph Having made no effort to consult Weldon either prior to or after the re-release, they mistakenly assumed the “Panther” to have panted his last (Lawsuit, anyone?)

MISLABELED, MISAPPREHENDED, And MISTREATED
EDDIE WELDON PAMELA Known at various times by various labels Ventured over a social boundary to perform with African-American musicians Reckoned to be dead and prematurely eulogized as an unenlightened white performer Outcome: Possible civil settlement Known at various times by various labels Ventured over a personal boundary to offer a gesture of affection to a therapist who had electrically shocked her Reckoned to be manipulative, and soon afterward electrically shocked for displaying emotional distress Outcome: Possibly worse… MISLABELED, MISAPPREHENDED, And MISTREATED

ONE ALUMNUS OF THE UCLA EXPERIMENT
Karl Taro Greenfeld continues his father’s work of chronicling the life of Noah, born with severe autism (and now grown). “Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy...In the late 1960s and early '70s, autism was considered a rarity in the U.S….Treatment was laughable: the dangerous Freudian inanities of Bruno Bettelheim and his now widely discredited methods, the talk therapy of the psychoanalytic community, whose members wanted to treat the parents rather than the child (the blame-the-parents approach). We moved from New York to Los Angeles in search of a cure for Noah. There, at UCLA, new behavioral programs, the operant-conditioning and discrete-trial therapies that now dominate autism treatment, were being pioneered by psychologists...the success that Lovaas would have with some of the autistic children he worked with eluded Noah...I have since heard of numerous children who also, as one parent I know put it, ‘flunked’ Lovaas...” From Greenfeld, K.T. (2009, May 25). Growing old with autism. Time 173(45). Retrieved from

AUTISM, AVERSIVES AND ANXIETY
"...Compared with a sample of 1751 community children, AS and autistic children demonstrated a greater rate of anxiety and depression problems. These problems had a significant impact on their overall adaptation (p. 117)..." Kim, J., Szatmari, P., Bryson, S., Streiner, D., and Wilson, F. (2000). The prevalence of anxiety and mood problems among children with autism and Asperger syndrome [Abstract]. Autism 4(2), (2000) DOI: / "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." Autism National Committee. (2008, Summer). Can aversives and restraints produce PTSD in people with autism? The Communicator, n.p. Retrieved from "People who have been hurt in the name of therapy may not understand their plight any differently than 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)." Lovett, H. (1996). Learning to listen: Positive approaches and people with difficult behavior. Baltimore: Brookes.

WHOSE BEHAVIORS ARE NOT QUITE HUMAN?
Behaviors of parents of children on the autism spectrum? Behaviors of children, adolescents and adults on the autism spectrum? OR Behaviors of professionals who have caused individuals living on the autism spectrum to experience compulsory sterilization, electrical shock, drug-induced hallucinations, alienation from parents, and post-traumatic stress disorder?

A QUESTION OF NAVIGATION— REVISITED ONCE MORE
Considering Persons on the autism spectrum Their parents (and other close relatives) Professionals Which of these does not Encounter frustration in constructing self? Encounter risk in actualizing self? Need both framework and freedom in order to succeed at overcoming resistance and inertia? SEA OF PROMISE (self-actualization) INDIFFERENTIA (hyperindividualistic culture) DEPRESSIA BAY OF APATHY OPPRESSIA SEA OF FRUSTRATION (self-construction) XENOPHOBIA (hypoindividualistic culture)

INDIVIDUALS ON THE AUTISM SPECTRUM AND THEIR FAMILIES
PROFESSIONALS WHO STUDY, DIAGNOSE AND TREAT INDIVIDUALS ON THE AUTISM SPECTRUM Experience psychosocial distress Experience psychoemotional distress Experience neuropsychological distress Tend to react maladaptively to distress In reacting, may affect a limited number of individuals Experience psychosocial distress Experience psychoemotional distress Experience neuropsychological distress Tend to react maladaptively to distress In reacting, may affect an unlimited number of individuals ALL QUITE HUMAN!

if human, then Not deity We humans possess ample capacity for
Error in line of reasoning Error in course of action “Iwannago!”

if human, THEN Not demon We humans err most often due to
lack of justifiable motivation? lack of knowledge? Our thinking often is profoundly influenced by the times and places wherein we have lived Bruno Bettelheim, born in Austria,1903 Ole Ivar Lovaas, born in Norway,1927 During my childhood and adolescence, I witnessed and experienced Cold War Civil rights struggle Behaviorism applied questionably

WHICH SHOULD BE DEMONIZED?
WHICH MAN: BETTELHEIM OR LOVAAS? WHICH NATION: germany or THE US? Bettelheim who once insisted to parents grieving a child’s accidental death that they should examine themselves over what caused them to drive that child to suicide who for decades insisted that the only hope for children with autism was to be separated from their emotionally toxic parents who spent a year in Buchenwald and Dachau (along with other Austrian Jews) before emigrating to the US who took his own life in 1990 Lovaas who rejected an attempted embrace from a girl with autism, and then electrically shocked her for crying out who, at about the same time he was conducting his experimental behavioral treatments at UCLA, also helped conduct one of the experiments wherein children with autism were given LSD-25 whose parents were forced to labor for the Nazi occupiers of Norway prior to his own emigration to the US Both Bettelheim and Lovaas have been celebrated (albeit during different periods of time and/or by different sets of supporters) have had their methods depicted as inhuman (albeit during different periods of time and/or by different sets of critics) were all too human in their respective failings Germany which, under the Nazi regime, inflicted such cruelties across Europe as arguably have resonated in the lives of men such as Bettelheim and Lovaas which, after the defeat of the Nazis, famously was taken to task at a place called Nuremberg—where some were sent to the gallows for conducting certain medical experiments US which defeated the Nazis and took Germany to task at Nuremberg which infamously never has quite taken itself to task over a certain medical experiment conducted at a place called Tuskeegee Both Germans and Americans have witnessed some of the most predatory acts committed in their midst being perpetrated by the very individuals entrusted to serve all humankind have witnessed victimized individuals providing some of the most significant assistance to such perpetrators (e.g., a certain African-American female nurse in the Tuskeegee experiment) have benefitted from moral courage exercised by those from whom it was least expected (e.g., LBJ, who in ending the Tuskeegee experiment did what Roosevelt, Truman, Eisenhower and Kennedy all had failed to do) have been celebrated as cultural giants have been depicted as inhuman are all too human in their respective failings WHICH SHOULD BE DEMONIZED?

THE STANDARD FOR THE CLINICIAN: BEHAVIOR NOT ONLY HUMAN BUT HUMANE
ALL TOO HUMAN: RESPONDING WRONGLY TO DISABILITY ALL TOO HUMAN: DISABILITY ITSELF Frustration in efforts to end some facet of human suffering (e.g.: the anguish of families dealing with severe autistic behaviors in a child; the lingering deaths resulting from untreated syphillis) produces a desperate frame of mind wherein the end seems to justify any means used to achieve it. In such a frame of mind, one tends to ignore suffering caused by efforts intended to end suffering. “…The ICF puts the notions of ‘health’ and ‘disability’ in a new light. It acknowledges that every human being can experience a decrement in health and thereby experience some degree of disability. Disability is not something that only happens to a minority of humanity...” World Health Organization. (2010). Classification of Functioning, Disability and Health (ICF). Retrieved from THE STANDARD FOR THE CLINICIAN: BEHAVIOR NOT ONLY HUMAN BUT HUMANE

if human, then Needing to be valued
The studies replicating Lovaas’ ABA findings (Sallows & Graupner, 2005; Cohen et al., 2006) reported, overall, successful social integration in 28 out of 44 cases. Can it honestly be argued that 16 out of 44 (overall cases in which social integration was unsuccessful ) is a negligible figure or that any one of those sixteen cases just should not be counted?

if human, then Needing to understand…
“…So as a person with autism, what is my definition of consciousness? For me, consciousness and being able to think are the same thing (p. 246)…” Grandin, T. (2002). Do animals and people with autism have true consciousness? Evolution and Cognition 8, “…Somehow, this single-celled organism had memorised the pattern of events it was faced with and changed its behaviour to anticipate a future event…” Mullins, J. (2009). Memristor minds: The future of artificial intelligence. New Scientist Retrieved from

if human, then Needing to to be understood (But how?)

Worth reconsidering “…Autism’s surface symptoms might thus be understood as the developmental reaction of a normal human mind to abnormal neural hardware.” Belmonte et al. (2004, p.6). Autism as a disorder of neural information processing: Directions for research and targets for therapy. Santa Monica, CA: Cure Autism Now., Inc.

A stands for ASSESSMENT

ASSESSMENT—FOR WHAT PURPOSE(S)?
According to Durand and Barlow (2009), purposes of clinical assessment include (ranked in order of importance) understanding the individual predicting behavior planning treatment evaluating treatment outcome Durand, V.M., and Barlow, D.H. (2009). Essentials of abnormal psychology (5th ed.). Belmont, CA: Thomson-Wadsworth.

WHAT OFTEN (NEEDLESSLY) COMPLICATES ASSESSMENT IN CASES OF AUTISM?
WORDS GETTING IN THE WAY OF REALITIES Terminology

How Autism Has Been Defined PER DISCIPLINARY PERSPECTIVE
Pedagogical “...a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child's educational performance...”

Psychological “an abnormal absorption with the self; marked by communication disorders and short attention span and inability to treat others as people”

Medical “A developmental brain disorder that typically affects a person's ability to communicate, engage in social interactions, and respond appropriately to the environment...Autism makes some people seem closed off and shut down; others seem locked into repetitive behaviors and rigid patterns of thinking.”

So did you hear the one… …about the kid who walked out of a university hospital with autism, and lost it by the time he made it back to school? This actually refers to an incident that took place in Omaha—because of a difference between medical and pedagogical definitions of autism. …about the professionals who became so fixated upon definitions that they made children with autism go untreated? Can this actually refer us?

Maladaptive fixation upon words
Is each profession fixated upon a different definition of autism? Is maintaining separate and distinct definitions of autism worth what a person with autism might lose by having been denied treatment? What keeps us—as professionals—from getting on the same figurative page regarding autism?

Autism—Etymology of the label
Bleuler (1910) derived from Greek autos (self) + ismos (state or action) Latinized his newly synthesized word autismus The plural of the English form—autisms— can be and has been used interchangeably with the phrase “autistic behaviors.” Similarly, the word parkinsonisms has been used for “parkinsonian symptoms”, and tourettisms has been used for “tourettic behaviors.” Are parkinsonisms observed only among people with Parkinson’s disease? Are tourettisms observed only among people with Tourette’s syndrome?

Bleuler wrote of autism not so much as a disorder unto itself as a defining symptom of schizophrenie—one of the “four As” (per translation): ambivalence autism affect associations Bleuler, E. (1911). [Dementia praecox or the schizophrenias.] Vienna: F. Deuticke.

Dementia praecox, infantile psychosis and autism Pick, A. (1891). [Over primary chronic dementia (a.k.a. Dementia praecox) at the juvenile age.] Prager medicinische Wochenschrift 16, Mahler, M.S. (1952). On child psychosis and schizophrenia—Autistic and symbiotic infantile psychoses. Psychoanalytic Study of the Child 7, Kanner, L. (1944). Early infantile autism. The Journal of Pediatrics 25(3),

AUTISM OR AUTISMS? "...ASD, in turn, is a subset of the broader autism phenotype (BAP), which describes individuals who may not have ASD but do have autistic-like traits, such as avoiding eye contact." Autism spectrum (n.d.). Wikipedia. Retrieved from "...the genetic liability for autism may be expressed in nonautistic relatives in a phenotype that is milder but qualitatively similar to the defining features of autism (p. 185)..." Piven, J., Palmer, P., Jacobi, D., Childress, D., and Arndt, S. (1997). Broader autism phenotype: Evidence from a family history study of multiple-incidence autism families. American Journal of Psychiatry 154(2),

QUALITATIVE UNIT ANALYSIS
Qualitative unit analysis is a scientific approach first proposed by Lev Vygotsky (1934) “In our opinion the right course to follow is to use the other type of analysis, which may be called analysis into units…By units we mean a product of analysis which, unlike elements, retains all the basic properties of the whole and which cannot be further divided without losing them…What is the unit of verbal thought that meets these requirements? We believe that it can be found in the internal aspect of the word, in word meanings.” Vygotsky, L.C. (1934). Thinking and speaking. In E. Hanfmann & G. Vakar (Eds.),Thought and language (1962 ed). Cambridge, MA: MIT Press.

THE NEO METHOD OF QUALITATIVE UNIT ANALYSIS (TAYLOR, 2005)
Qualify before you quantify! Qualification of terms at three successive criterion levels: Nominal Epistemic Ontological The following example outlines the NEO analysis performed prior to the quantitative literature review published by Taylor (2006) [Epileptiform activity and discontinuities in language acquisition. Perspectives on Neurophysiology and Neurogenic Speech and Language Disorders 16(1), 4-11.]

NOMINAL ANALYSIS: WHAT DO WE SAY WE ARE TALKING ABOUT?
Acquired epileptiform aphasia (AEA) represents a deliberate movement towards more descriptively labeling the clinical phenomenon most widely known as Landau-Kleffner Syndrome. The qualifier “acquired” denotes a condition that is not of developmental etiology. The qualifier “epileptiform” denotes recurring electrophysiological events that can (but not necessarily will) precipitate seizure episodes. “Aphasia” specifies a clinically significant loss of receptive and/or expressive language capacity.

EPISTEMIC ANALYSIS: HOW DO WE KNOW WHAT WE ARE TALKING ABOUT?
The onset of AEA (a.k.a. LKS) has been reported at ages generally ranging from 2 to 18 years. Qualifying a language deficit as “acquired” instead of “developmental”on the mere basis of its not being noted at birth constitutes an argument from ignorance. Epileptiform activity is detected using electrophysiological measurements, and accuracy of measurement can vary with the procedure used. In the same case, a waking electroencephalogram (EEG) may reveal no epileptiform activity, a nocturnal EEG may reveal epileptiform activity at several cortical sites, and a magnetoencephalogram (mEEG) may reveal subcortical epileptiform activity in addition. Aphasia is diagnosed using standardized measures of receptive and expressive language performance, with an implicit presupposition of intact sensory reception and processing. In many cases labeled AEA or LKS, however, clinically significant central disturbances of auditory processing have been documented.

ONTOLOGICAL ANALYSIS: WHAT ACTUALLY ARE WE TALKING ABOUT?
With the label AEA invalidated between the nominal and epistemic levels of analysis—and LKS discredited, in words written by one who arguably is an authority, as a label that constitutes appeal to authority—neither label qualified as a criterion for excluding cases from consideration. Preliminary review of a consequently more inclusive database resulted in identification of three factors that became the focus of subsequent quantitative analyses: Arrest or reversal of language development documented prior to onset of clinical seizure disorder Multifocal epileptiform activity Recovery as a function of biological maturation

REGARDING RELEVANCE: AUTISM AND EPILEPSY
Sufficient overlap exists between the autism spectrum and seizure-disordered clinical populations to complicate differential diagnosis "One major complicating factor is that epilepsy is not a single disorder. In fact, some experts are pushing to rename epilepsy 'epilepsy spectrum disorder,' much like autism is now called autism spectrum disorder, to reflect the wide range of associated symptoms and severity. 'There are multiple ways to become epileptic and there are multiple symptoms involved, not just seizures,' says Frances Jensen, M.D., a Harvard neurologist and researcher. Its severity can range from 'the occasional seizure,' she adds, to extreme, frequent seizures coupled with severe mental retardation, developmental delays or autism." Patoine, B. (2007, September/October). Unraveling epileptogenesis: Research yields clues to how epilepsy develops, progresses. EpilepsyUSA, n.p. Retrieved from

Observation Listening Reflection
BESIDES CLARIFICATION OF TERMINOLOGY, WHAT IS NECESSARY IN ORDER TO ENSURE ACCURATE ASSESSMENT? Observation Listening Reflection

fiRSTHAND insights FROM CLIENT AND FAMILY
OBSERVATION AND LISTENING WILL YIELD fiRSTHAND insights FROM CLIENT AND FAMILY

REFLECTION ON WHAT IS OBSERVED AND HEARD WILL YIELD UNDERSTANDING
Got my kicks on Route 66 My apologies for having to remove the sound file. The above phrase is a reference to how I adapted an autistic behavior pattern to facilitate a daunting task. I listened to “Theme from Route 66” repeatedly, for five hours, while scanning my eyes over a stack of unfamiliar material, page after page. I thus was able to assimilate over 300 pages in one evening—and pass a board exam the next morning. MLT

ASSESSMENT—FOR WHAT PURPOSEs (again)?
understanding the individual predicting behavior planning treatment evaluating treatment outcome Durand, V.M., and Barlow, D.H. (2009). Essentials of abnormal psychology (5th ed.). Belmont, CA: Thomson-Wadsworth.

T stands for TREATMENT

TREATMENT IS INEXTRICABLY BOUND WITH ASSESSMENT
Treatment begins with assessment; assessment continues throughout treatment.

WHAT IS TREATMENT not ABOUT?
Implicit and explicit appeals to authority these can take the place of original (and rational) thought about autism the “experts” (examples abound—but why not start with me?) Brand awareness (e.g.: Board Certified Behavior Analyst®, DIR®/Floortime™, SCERTS®, TEACCH®, The Son-Rise Program®) In a September 2007 presentation given in Omaha, Temple Grandin described how, in any effective intervention with children on the autism spectrum, nominally different approaches tend to become remarkably similar

WHICH APPROACH SHOULD WE FAVOR?
“Jeet Kune Do favors formlessness so that it can assume all forms and since Jeet Kune Do has no style, it can fit in with all styles. As a result, Jeet Kune Do utilizes all ways and is bound by none and, likewise, uses any techniques which serve its end (p.12). Lee, B. (1975). Tao of Jeet Kune Do. Santa Clarita, CA: Ohara Publications

IT IS NOT WHICH APPROACH WE USE, BUT WHAT WE BRING TO (AND WITH) THAT APPROACH

TREATMENT ANECDOTES I have had both good and bad experiences in using different methodologies. ABA—”Would you say that again?” Multifocal therapy MukiBaum Treatment Centers. (n.d.). Nehama Baum: Mother and Visionary. Retrieved 20 February 2010 from /match_muki/nehama.php

MULTIFOCAL THERAPY anecdote
“Wanna go for a walk?” Follow up, part 1 Follow up, part 2

EMPATHY Never undervalue empathy
Empathy is demanding—requiring both emotional intelligence and emotional calibration. Blocker, C.P. (2009). The emotionally intelligent salesperson. Keller Center Research Report August Retrieved 14 April 2010 from Kidwell, B., Hardesty, D., and Childers, T. (2008). Emotional calibration effects on consumer choice. Journal of Consumer Research 35, DOI: /591107 It is empathy on the part of family and friends, not scientific or clinical savvy on the part of professionals, that has made the difference between productive adulthood and lifelong dependency for many members of Baron-Cohen's “Lost Generation”—myself included. Baron-Cohen, S., Robinson, J., Woodbury-Smith, M., Wheelwright, S. (2007). Very late diagnosis of Asperger Syndrome: The Cambridge Lifespan Asperger Syndrome Service (CLASS). Retrieved from While not specifying the word, Lovaas (1974) acknowledged the crucial importance of empathy even to the successful use of aversive stimuli; conversely, I personally have witnessed the results of employing even non-aversive ABA without empathy. While I have yet to encounter a refrigerator mother, I have encountered refrigerator clinicians. EACP—Elective Autism of Clinical Persona The less otherness—the more humanity—you impute a priori to the person with autism, the more facile you will be in your relationship with that person.

courage Courage to risk failure.
Courage to return from failure with insight. Courage to persist.

ONE ANother We—in every sense of the word

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