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ABA Resources for Recovery from Autism-Behavioral intervention (ABA) is a teaching method to help children with autism and related disorders develop to their maximum potential. Links to research, service providers, support groups, curriculum, and legal and special education information
ABA approach to Autism-The Cambridge Center for Behavioral Studies offers a section of their web site to educating parents and other interested persons about the ABA approach. Click on the section dealing with Parents.
Applied Behavior Analysis (ABA) and Autism: Much publicity has recently surrounded the Applied Behavior Analysis approach to the treatment of Autism. But what exactly is ABA? How do you know if an intervention program works? Read more...
ASAN Autistic Self Advocacy Network - Looking for ways to meet the access needs of Autistic individuals? Do you wish to avoid dropping the ball at your function, get-together, or meeting? The autistic spectrum includes a wide variety of persons with a wide variety of support needs. Planning ahead for your Autistic guests will help establish equal participation.
Adults with Autism - Real-life story - Freddie - I'm 70 now, and wasn't diagnosed with Asperger’s until I was 67.
- Articles on advocacy: Successful advocacy depends on having accurate information and knowing how to use it. There are four sections in the Advocacy Library: Advocacy Articles: FAQs- Letters to Wrightslaw, Newsletter Archives, and Advocacy Tips
- Advocacy tips: general tips to follow in becoming your child with Autism's advocate.
- Autistic advocacy: a good review of topics and articles on Autism advocacy.
- Autism community-Dedicated to sharing ideas on alternative living arrangements for autistic people.
- Autism Network International-An autistic-run self-help and advocacy organization for autistic people.
- Autism Information-Provides information to parents, doctors, professionals, tutors, caregivers, and anyone interested in learning more about autism and autism spectrum disorders.
- Autism USA-Community for parents, caregivers and educators of people with autism.
- Autism Society-Support community for parents and families, news, photo-art gallery, information and interactive features.
- Autism Advocacy-Positive support and information regarding autism, pdd, asperger's and all disorders under the spectrum. Siblings, spouses, ABA and other therapies, IEPs, Beginner's Guide to Autism, message board and online club.
- Autism and self-advocacy-Developing self-advocacy for people living with Autism.
- Autism and families-A nonprofit organization dedicated to providing information and advice to families of More advanced individuals with Autism, Asperger's syndrome, and Pervasive developmental disorder (PDD).
- Asperger's Disorder: throughout the life span- Diagnosis and multimodal treatment of Asperger's Disorder in different age groups.
- Asperger Syndrome Coalition of the U.S.-The Asperger Syndrome Coalition of the U.S. is a national nonprofit organization committed to providing the most up-to-date and comprehensive information on Asperger Syndrome and related conditions
- Asperger Syndrome Videos from Coulter Video- Videos to help people who support individuals with Asperger Syndrome, on the high functioning end of the Autism spectrum
- Families of Adults Afflicted with Asperger's Syndrome (FAAAS) -A support group that is aimed at the families of those afflicted with Asperger's Syndrome. Especially those whose relative has not been correctly diagnosed until they are well into adulthood.
- NINDS Asperger Syndrome Information Page-Asperger Syndrome information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
- OASIS: Online Asperger Syndrome Information and Support -Includes research papers, support groups, clinicians, research projects, educational resources, message board/chatroom, and contributions from individuals and families.
- Tony Attwood and Asperger Syndrome- A resource for people with Asperger's, their families and professionals who work with them.
- What is Asperger Syndrome?- Asperger syndrome is an autism spectrum disorder, a group of conditions that include autism and other disorders with similar symptoms, such as problems with language and communication, and repetitive or restrictive patterns of thoughts and behavior. People with Asperger syndrome have autism-like problems in areas of social interaction and communication, but have normal intelligence and verbal skills. Asperger syndrome is usually thought to be the mildest of the autism spectrum disorders.
Purpose and procedures: Considering the heterogeneity of characteristics associated with autism spectrum disorders, it is not surprising that questions often arise about how best to evaluate children with this diagnosis.
Diagnostic and assessment instruments: The following instruments are used by educators, clinicians, and researchers to assess children suspected of, or previously diagnosed with, a pervasive developmental disorder.
Screening tests for autism: Screening tests for autism are often used if there is a heightened concern about possible autism, or as part of a general assessment of a child's development. Screening for autism is often done prior to a more specific in-depth assessment for autism.
Good overview: This article will discuss how various modes of technology (including technology designed as augmentative communication systems), can be used for children with autism
Assistive technology and augmentative communication: selective links to assistive technology and augmentative communication resources for children with Autism and other disabilities.
Curriculum wide integrationThe Center for Technology in Education (CTE), a partnership of Johns Hopkins University and the Maryland State Department, is developing a hybrid paradigm that involves infusing technology-based instructional and behavioral supports into existing curriculum activities to help promote gains in communication, social skills, academics, as well as to increase the children's overall involvement in classroom activities.
High tech assistive technology strategiesThere are two "high"-tech strategies which have proven very effective in focusing on various skill areas for children with autism: video taping and computers.
Case study-literacy needs and assistive technology:the use of assistive technology with a young child who has literacy problems and also has Autism.
Assistive technology site: a thorough assistive technology site
Extensive site with over 250 assistive technology websites:this is a wonderful and comprehensive list of the various assistive technology sites.
Teaching Children with Autism - Puzzling Through - New Ways to Teach Children with Autism.
Autism Education - For children with autism education is usuallly used as the first line of defense to treat Autism Spectrum Disorders. Autism education can also complement other interventions. The National Academy of Sciences (2001) recommends educational programs that are intensive (more than 25 hours a week), engage the child and are directed toward a strategic goal.
Teaching Social Skills to Children with Autism - Teaching social skills to children with autism is an area of behavioral treatment that is continuously evolving, perhaps more than any other area. The Journal of Applied Behavior Analysis alone frequently includes articles discussing the teaching of interactive play skills, the development of creativity and spontaneity, and the development of conversational skills.
- Facing Autism: Giving Parents Reasons for Hope and Guidance for Help - This is one mother's account of coping with her son's autism. Within two months of his diagnosis, Ryan began intensive Applied Behavior Analysis (ABA) and with his mother tackled other related issues, including immune deficiency, food intolerance, and obsessive-compulsive behaviors.
- Reports From My Life with Autism - A high-functioning autistic, Grandin presents linked articles on her life and her work as an animal scientist.
- Toilet Training for Individuals with Autism and Related Disorders
- Let Me Hear Your Voice: A Family’s Triumph Over Autism - A vivid and uplifting story of how a family pulled not one but two children out of the torments of autism--and into a normal life.
- A Medical Treatment Guide for Autism Spectrum Disorder - This book written by an experienced clinician that gives a step-by-step treatment guide for parents and doctors based on the understanding that ASD is a complex biomedical illness resulting in significant brain malnutrition.
- Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery - Though the theory has not yet been proven, author Seroussi says, research now suggests that autism may be an autoimmune disorder triggered in rare cases by an infant's measles-mumps-rubella immunizations. Convinced that the inability to digest certain proteins was contributing to her son's condition and that his autism was related to his reaction to MMR vaccines, Seroussi eliminated suspect foods from his diet; he made such dramatic improvement that, by age four, he was functioning normally.
- Activity Schedules for Children with Autism: Teaching Independent Behavior - A thorough introduction to autism, covering diagnosis, assessments, history, prognosis, and methods of education.
- My Friend with Autism: A Coloring Books for Peers and Siblings - A coloring book to help peers and siblings understand autism and Asperger's Syndrome.
- A Treasure Chest of Behavioral Strategies for Individuals with Autism - A resource manual that provides theory and the best practices in behavior management with individuals with autism. It is an easy reference for using behavioral interventions.
- Educating Children with Autism - Educating Children with Autism outlines an interdisciplinary approach to education for children with autism. The committee explores what makes education effective for the child with autism and identifies specific characteristics of programs that work.
- Overcoming Autism - Clinician Koegel (cofounder of the Autism Research Center at the University of California Santa Barbara) and novelist LaZebnik (Same As It Ever Was), mother of an autistic boy, team up "to show you how intelligent, well-planned early interventions... can improve the symptoms of autism enormously."
- Enzymes for Autism and other Neurological Conditions - Enzyme therapy is one of the fastest emerging successful alternatives for people on the autism spectrum as well as other neurological conditions. Reports of significant improvements in health, pain reduction, language, food tolerance, socializing and other benefits emerge daily.
- Solving Behavior Problems in Autism - A practical approach to recognizing the complexity of behavior management for students with autism spectrum disorders and other students with communication and behavior challenges. Continuing the approach of supporting communication with visual strategies, this book contains many problem solving techniques.
- The Everything Parent’s Guide to Autism - Author Adelle Jameson, the mother of an autistic child and an active participant in the autism community, speaks directly to parents and explains exactly what they can expect after diagnosis, the range of treatments and therapies available, and where to go for advice—both medical and emotional.
- Inclusive Programming for Elementary Students with Autism - This book discusses the benefits of inclusion, as well as offering exercises and programs that make inclusion comfortable for the child with autism, his teacher and fellow students.
- List from TEACCH Program - List of professional book resources on autism
- Non-fiction books - List of non-fiction books on autism, listed by title
- Non-fiction by topic - List of non-fiction books on autism, listed by topic links
- Fiction - List of fiction books relating to autism, listed by author
- Children’s autism books - List of children's books relating to autism, listed by author
- Autism resources-bibliography: books and articles-extensive - An extensive list of books and articles on autism
- Journals and periodicals - List of journals and periodicals dedicated to autism
- Journals that often carry articles on autism - A list of journals that often carry articles on autism
- Selected articles - A list of selected choice articles on autism
- Diagnostic and assessment references - A list of references for diagnosing and assessing autism
Autism and PDD research at the Yale Child Study Center
When Autism Strikes: Families Cope with Childhood Disintegrative Disorder - The children chronicled in this book share a common affliction. Born healthy and happy, they lose their minds to a mysterious disorder for which there is no known cause or cure. Fortunately the disorder is rare, but more children may be affected every day, on every continent.
The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders - This book is written for parents but should also be required reading for professional workers who see autistic children or adults, especially for its insights into parents' experiences of this strange, frustrating but fascinating condition.
Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals - This book will be of great interest to teachers, parents, and clinicians in their efforts to facilitate the learning of the child with autism. It draws on the large, and increasing, body of work generated in recent years.
Autism and Childhood Psychosis - Autism and Childhood Psychosis is Frances Tustin first book and the original statement of her views on autistic states of mind and the genesis of varieties of childhood psychosis. In it, she tackles problems of diagnosis as these relate to therapeutic intervention.
The Protective Shell in Children and Adults - We shall come to realize that the protective shell develops as the result of people with autism being in the compulsive grip of overintense 'flight' reactions -- 'fight' reactions not being part of the repertoire of these passive children.
Emotional Development in Atypical Children - Without an understanding of emotional development in children with disabilities we are unlikely to either understand fully the causes of their difficulties or to ameliorate these difficulties.
Music Therapy for the Autistic Child - Music therapy cannot cure such conditions as autism and mental handicap but it can alleviate the negative behaviours when the child is involved in interactive music-making with the therapist. So that the music therapist can meet the child on his or her own terms spontaneously, much of the music is improvised.A Passion to Believe: Autism and the Facilitated Communication Phenomenon - In this volume Dr. Twachtman-Cullen presents an in-depth analysis of facilitated communication (FC) in the context of the larger movement it represents. Understanding the essence of the controversies, Dr. Twachtman-Cullen continually reminds the reader of the most central issues. Her penetrating analysis of FC is reasonable, logical, and compelling.
When Autism Strikes: Families Cope with Childhood Disintegrative Disorder - In his classic description of the autistic syndrome, Leo Kanner ( 1943) originally suggested that children with autism were born with the disorder. Subsequent research has modified this impression. It is clear that most children with autism do exhibit problems in the first year or year and a half of life, but a small group of children develop autism, or something very similar to it, after what appears to be 1 or even 2 years of normal development.
Advanced Abnormal Child Psychology (Chap. 17 "Pervasive Developmental Disorders: The Spectrum of Autism") - This chapter of an established textbook on abnormal child psychology provides an in-depth overview of autism. See Chapter 17.
General article including causes: It has been over 50 years since Dr. Leo Kanner, a psychiatrist at Johns Hopkins University, wrote the first paper applying the term 'autism' to a group of children who were self-absorbed and who had severe social, communication, and behavioral problems. This paper provides a general overview of the complexity of this developmental disability by summarizing many of the major topics in autism.
Excellent overview of various theories of autism: Some experts believe there are bio-chemical reasons for autism; others suspect that it is a psychiatric disorder. Some believe that a combination of the wrong foods and too many antibiotics and environmental toxins can damage the colon and lead to physical and behavioral problems, including autism.
General article including causes from the National Institute of Mental Health: All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior.
Excellent overview: everything you ever wanted to know about Autism.
Theories and causes: There is no theory of the cause of autism which everyone has found convincing. There may be multiple causes. Thus we will review some of the proposed causes.
- General article including characteristics: Many autistic infants are different from birth. Two common characteristics they may exhibit include arching their back away from their caregiver to avoid physical contact and failing to anticipate being picked up (i.e., becoming limp). Read more.
- Common Characteristics: The symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Although autism is defined by a certain set of behaviors, children and adults can exhibit any combination of the behaviors in any degree of severity.
- Excellent overview: contains an excellent section on characteristics of Autism.
- Overview of Childhood disintegrative disorder : Childhood disintegrative disorder is a condition occurring in 3- and 4-year-olds who have developed normally to age 2. Over several months, a child with this disorder will deteriorate in intellectual, social, and language functioning from previously normal behavior.
- Contrast DSM criteria for CDD with the other PDD disorders. : Doctors are divided on the use of the term PDD. Many professionals use the term PDD as a short way of saying PDDNOS. Some doctors, however, are hesitant to diagnose very young children with a specific type of PDD, such as Autistic Disorder, and therefore only use the general category label of PDD. This approach contributes to the confusion about the term
- Autism Organizations: Given the CDD is one of the disorders along the autism spectrum, with symptoms quite similar to autism itself, you may also find useful information, assistance, and connection to local resources at any or all of the autism-related organizations.
- Educating students with Autism: As was said above, it's very difficult to locate information specific to CDD, let alone materials about educating students with this rare disorder. Since CDD is one of the disorders along the autism spectrum, with symptoms quite similar to autism itself, appropriate educational interventions will be those similar to what's used when educating students with autism.
Is there more than one type? : Several related disorders are grouped under the broad heading "Pervasive Developmental Disorders" or PDD
Pervasive developmental disorder: The diagnostic category pervasive developmental disorders (PDD) refers to a group of disorders characterized by delays in the development of multiple basic functions including socialization and communication.
Excellent overview: Several related disorders are grouped under the broad heading "Pervasive Developmental Disorder" or PDD-a general category of disorders which are characterized by severe and pervasive impairment in several areas of development
Overview of Asperger’s Syndrome: Asperger Syndrome is a neuro-biological disorder named for a Viennese physician, Hans Asperger, who in 1944 published a paper which described a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills.
Autistic savant: The autistic savant is one of the most fascinating cognitive phenomena in psychology. "Autistic savant" refers to individuals with autism who have extraordinary skills not exhibited by most persons.
Autism Spectrum Disorders-Full article on the full spectrum of autistic disorders, and how to sort them out.
Treatment and education: While there is no cure for autism, there are treatment and education approaches that may reduce some of the challenges associated with the disability. Intervention may help to lessen disruptive behaviors, and education can teach self-help skills that allow for greater independence.
Lovaas Institute: The UCLA Model of Applied Behavior Analysis was created and developed in the Psychology Department of UCLA under the direction of Dr. O. Ivar Lovaas. It is based on extensive clinical experience and more than 40 years of scientific research.
Institute for Applied Behavior Analysis- ABA
All about TEACCH
Educational methods: There are a number of methods & techniques used in the education of autistic children. Many professionals use a variety of combination of methods. Some professionals attempt to identify an individual student's learning style and modify curriculum and materials to suit the student's learning style.
Guidelines for mainstreaming: With the momentum for (mainstream) inclusion of children with special educational needs and the growing realisation that it may not always be in the best interests of children with autism or Asperger syndrome to be grouped together in classes, it is likely that many children at the higher functioning and more verbal end of the continuum of need, who might previously have attended specialist schools, will now be educated in their local, mainstream schools.
Complimentary approaches to the treatment of Autism: While early educational intervention is key to improving the lives of individuals with autism, some parents and professionals believe that other treatment approaches may play an important role in improving communications skills and reducing behavioral symptoms associated with autism. These complementary therapies may include music, art or animal therapy and may be done on an individual basis or integrated into an educational program.
Behavioral and communication approaches to the treatment of Autism: The behaviors exhibited by children with autism are frequently the most troubling to parents and caregivers. These behaviors may be inappropriate, repetitive, aggressive and/or dangerous, and may include hand-flapping, finger-snapping, rocking, placing objects in one's mouth, and head-banging. Children with autism may engage in self-mutilation, such as eye-gouging or biting their arms; may show little or no sensitivity to burns or bruises; and may physically attack someone without provocation.
- Functional assessment refers to a variety of approaches used to gather information about the cause of problematic behaviors to enable the design of effective treatment. Functional assessment approaches include descriptive methods (e.g., interviews, rating scales), direct observations (e.g., ABC, time charts) and functional analysis.
- Incidence and some causes: There has been a lot of advancement in the diagnostic criteria, diagnostic tools and investigations, physician awareness and the confidence among healthcare workers to diagnose Autism at an early age. This has resulted in the revision of statistical data concerning this disorder.
- GAO 2005 report on Autism: an excellent report on Autism statistics and information from the GAO and speaks to the 500% increase in Autism diagnosis from 1993-2002. A Pdf file.
A summary of special education law specific to autism. Subjects covered: Assessments, IEP, Stay Put, Least Restrictive Environment, Autism Services Parent Attachment to IEP, What is a Free Appropriate Education - FAPE, Extended School Year - ESY, Stay Put, Compensatory Education, Damages, Mediation and Due Process
Autism spectrum medical issues: a family's personal journey in dealing with thetreatment of Autism.
Treatment Options - There is no single best treatment package for all children with ASD. One point that most professionals agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs.
Allergies and food sensitivities: People with autism are more susceptible to allergies and food sensitivities than the average person; and this is likely due to their impaired immune system. I have provided a brief discussion of allergies and food sensitivities below.
Autism from mercury poisoning: Thimerosal is an organic compound that contains mercury, or an ‘organomercurial’ and can cause Mercury poisoning.
Autism and element imbalances: Much concern has been raised over the link between exposure to heavy metal toxins and neurological brain damage associated with learning and behavioral disorders in children. Indeed, research shows that exposure to heavy metals such as lead and mercury can impair brain development at very early ages-even at low doses previously deemed "harmless."1-3
Autism and fatty acids: Increasing evidence suggests that essential fatty acids, which are critical nutrients for the brain, may be especially important for children suffering from developmental disorders like autism.
Biomedical and Dietary Approaches: While there are no drugs, vitamins or special diets that can correct the underlying neurological problems that seem to cause autism, parents and professionals have found that some drugs used for other disorders are sometimes effective in treating some aspects of or behaviors associated with autism.
Autism and secretin
Treatment of PDDNOS: No one therapy or method will work for all individuals with Autistic Disorder or PDDNOS. Many professionals and families will use a range of treatments simultaneously, including behavior modification, structured educational approaches, medications, speech therapy, occupational therapy, and counseling.
Dietary Autism treatment-Autism may be aided by a gluten-free, casein-free diet
Gluten Free Casein Free Diet and Autism-Explanation of the diet, menus, sources of foods, message board.
Guide to Improving Gastrointestinal Symptoms among Children with Autism Spectrum - Children with Autism Spectrum Disorder (ASD) frequently exhibit gastrointestinal (GI) distress. They often have deficiencies of benefi cial intestinal microfl ora, which may lead to infl ammation or immune dysfunction, malabsporption, food intolerance, failure to thrive, gas, bloating, constipation or diarrhea.
- PDD guide-Pervasive Developmental Disorder guide written by Dr. Rami Grossmann.
- PDD briefing paper-NICHCY briefing paper, discussing how Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) fits into the category of Pervasive Developmental Disorders.
- PDD Overview-Provides introduction, and information related to: clinical, differentials, workup, treatment, medication, follow-up, etc.
- PDD and your child-Find out all about PDD and autistic spectrum disorders. University of Michigan Health System (UMHS) can help you find all kinds of resources, including local support groups.
- List of statistics: a comprehensive list indicating all the statistics on Autism
- Definition and prevalence: Sixteen studies of the prevalence of autism in childhood, using epidemiological methods in defined populations in Europe, the USA and Japan, in English or with English summaries, were found in the published literature
- Increasing incidence-fact or fiction: Each year, the IRCA reports on the incidence of autism spectrum disorders in public schools in Indiana. Ten years ago, commonly accepted incidence rates ranged from 2 to 5 individuals per 10,000. Today, the Centers for Disease Control believe that the incidence may be as great as 1 in 166 for those diagnosed with autism, Asperger’s syndrome, and other pervasive developmental disorders.
- Researchers to Create Autism Databank - Scientists at the University of Michigan and 10 other universities will use a $10 million gift from a New York-based foundation to create a databank of DNA samples from 3,000 autism patients that they hope will help them identify different kinds of autism and develop treatments.
- Largest-Ever Search for Autism Genes Reveals New Clues - The largest search for autism genes to date, funded in part by the National Institutes of Health (NIH), has implicated components of the brain's glutamate chemical messenger system and a previously overlooked site on chromosome 11. Based on 1,168 families with at least two affected members, the genome scan also adds to evidence that tiny, rare variations in genes may heighten risk for autism spectrum disorders (ASD).
- Autism: It’s Not Just in the Head - The devastating derangements of autism also show up in the gut and in the immune system. That unexpected discovery is sparking new treatments that target the body in addition to the brain.
Interview with LornaJean King, OTR, FAOTA -One of the pioneers of sensory integration therapy, international lecturer on this topic, and founder and director of the Center for Neurodevelopmental Studies, Inc. in Phoenix, Arizona. Interview was conducted by Stephen M. Edelson (SE).
Sensory integration dysfunction articles-A series of articles written by parents and professionals on some of the most pressing issues for these children. Links to additional resource sites included.
Sensory Integration Resource Center-Provides a broad range of information and services on sensory integration. Includes sections for parents, children, physicians, educators, therapists, families, and frequently asked questions. Resource, research, and donations links are also included.
Sensory integration and parenting- Approaches sensory defensiveness (and its treatment, sensory integration) through a variety of articles aimed at helping parents raise and treat sensory defensive children
Definition of PDD: Over the past few years, PDD has become a subject of increased attention among parents, professionals, and policymakers across the country.
Autistic disorder from DSM IV: the diagnostic criteria used by DSM for Autism is listed.
Basic definition: Autism and Pervasive Developmental Disorder NOS (not otherwise specified) are developmental disabilities that share many of the same characteristics.
20 questions and answers: an Autism Primer containing 20 of the most frequently asked questions about Autism.
Common questions: quick answers to commonly asked questions about Autism.
Autism through the ages: Autism is not a modern problem, even though it has only recently gained vast recognition. It is difficult to discuss the history of autism treatment without paying particular attention to the history of "autism" as a concept and the ways in which autism has been conceptualized and theorized about over the past 100 years.
Getting a diagnosis: starting with a pediatrician - In an ideal world, pediatricians would be quick to see the early signs of ASDs, and would guide parents toward the best medical resources available. Sometimes that's how it works.
Autism experts and services - The largest collection of experts and services for the Autism Community.
Parent's guide to Autism - A guide to the diagnosis, treatment and education of children with autism and Pervasive Developmental Disorder. Information on diet, teaching methods, links, a message board, and book guide.
Growing Minds Autism Programs - Specializes in training parents whose children have autism, PDD, and other autism spectrum disorders. Offers 5-day programs with continuing distance support.
A Guide to Keeping Your Children with Autism Safe - Most parents place their children’s safety as a top priority as a rule. But for parents of autistic kids, the reality is that it can be even more difficult to keep your children safe from themselves and others simply because of the nature of their disorder.
I had spent a few days with the prodigious Stephen Wiltshire, an autistic savant in London with incredible drawing ability. I had driven up to Massachusetts to visit another autistic artist, Jessy Park (whose mother describes her in a most beautiful and intelligent personal narrative, “The Siege”), and seen her intensely colored, star-studded drawings (very different from Stephen’s) and something of her labyrinthine, magic world of correlations (between numbers, colors, morality, the weather). I had paid flying visits to several schools for autistic children. I had spent an extraordinary week at a camp for autistic children, Camp Winston, in Ontario—the more so as one of the counsellors there this summer was a friend of mine with Tourette’s syndrome, who, with his lungings and touchings, reachings and buttings, his enormous vitality and impulsiveness, seemed able to “get through” to the most deeply autistic children, in a way the rest of us were unable to do. Turning west, I had visited an entire autistic family in California—both parents, highly gifted, and their two children, all of them given (between the serious business of life) to jumping on trampolines, flapping their hands, and screaming. And now, finally, I was on my way to Fort Collins, in Colorado, to see Temple Grandin, one of the most remarkable autistic people of all: in spite of her autism, she holds a Ph.D. in animal science, teaches at Colorado State University, and runs her own business.
Autism, clearly, is a condition that has always existed, affecting occasional individuals in every period and culture. It has attracted in the popular mind an amazed, fearful, or bewildered attention (and perhaps engendered mythical or archetypal figures: the alien, the changeling, the child bewitched). And yet it was only in the nineteen-forties that it was medically described—almost simultaneously, as it happened—by Leo Kanner, in Baltimore, and Hans Asperger, in Vienna, both of whom, independently, converged on the term “autism.”
Kanner’s and Asperger’s accounts were in many ways strikingly (at times uncannily) similar—a nice example of historical synchronicity—but Asperger’s account, published in German, remained largely unknown for four decades, and was translated into English only in 1991. Hence Kanner’s formulation—with its strengths, and faults—dominated thought on autism for many years. Both Kanner and Asperger emphasized “aloneness”—mental aloneness—as the cardinal feature of autism; this, indeed, is why they called it “autism.” In Kanner’s words, this aloneness, “whenever possible, disregards, ignores, shuts out anything that comes to the child from the outside.” This lack of contact, he felt, was only in regard to people; objects, by contrast, might be normally enjoyed. The other defining feature of autism, for Kanner, was “an obsessive insistence on sameness”: most simply in the form of repetitive, stereotyped movements and noises (“stereotypies”); then in the adoption of elaborate rituals and routines; finally, in the appearance of strange, narrow preoccupations—highly focussed, intense fascinations and fixations. The appearance of such fascinations and the adoption of such rituals, often before the age of five, were not to be seen, Kanner and Asperger thought, in any other condition.
Asperger brought out other striking features, stressing, “They do not make eye contact . . . they seem to take in things with short, peripheral glances. . . . There is a poverty of facial expressions and gestures. . . . The use of language always appears abnormal, unnatural. . . . The children totally follow their own impulses, regardless of the demands of the environment [but] there can be excellent ability of logical abstract thinking.” While Kanner seemed to see autism as an unmitigated disaster, Asperger felt that it might have certain positive or compensating features—a “particular originality of thought and experience, which may well lead to exceptional achievements in later life.”
It is clear even in these first accounts that there is a wide range of phenomena and symptoms in autism—and many more can be added to those that Kanner and Asperger listed. A majority of Kanner-type children are retarded, often severely; a significant proportion have seizures, and may have “soft” neurological signs and symptoms—a whole range of repetitive or automatic movements, such as spasms, tics, rocking, spinning, finger play, or flapping of the hands; problems of coördination and balance; peculiar difficulties, sometimes, in initiating movements, akin to what is seen in parkinsonism. There may also be, very prominently, a large range of abnormal (and often “paradoxical”) sensory responses, with some sensations being heightened and even intolerable, others (which may include pain perception) being diminished or apparently absent. There may be, if language develops, odd and complex language disorders—a tendency to verbosity, empty chatter, cliché-ridden and formulaic speech; the psychologist Doris Allen describes this aspect of their autism as a “semantic-pragmatic deficit.” In contrast, Asperger-type children are often of normal (and sometimes very superior) intelligence, and generally have fewer neurological problems.
Kanner and Asperger had looked at autism clinically, providing descriptions of such fullness and accuracy that even now, fifty years later, they can hardly be bettered. But it was not until the nineteen-seventies that Beate Hermelin and Neil O’Connor and their colleagues in London, trained in the new discipline of cognitive psychology, focussed on the mental structure of autism in a more systematic way. Their work (and that of Lorna Wing, in particular) suggested that in all autistic individuals there was a core problem, a consistent triad of impairments: impairment of social interaction with others, impairment of verbal and nonverbal communication, and impairment of play and imaginative activities. The appearance of these three together, they felt, was not fortuitous; all were expressive of a single, fundamental developmental disturbance. Autistic people, they felt, had no true concept of, or feeling for, other minds, or even of their own; they had, in the jargon of cognitive psychology, no “theory of mind.” However, this is only one hypothesis among many; no theory, as yet, encompasses the whole range of phenomena to be seen in autism. Kanner and Asperger were still, in the nineteen-seventies, pondering the syndromes they had delineated more than thirty years earlier, and the foremost workers of today have all spent twenty years or more considering them. Autism as a subject touches on the deepest questions of ontology, for it involves a radical deviation in the development of brain and mind. Our insight is advancing, but tantalizingly slowly. The ultimate understanding of autism may demand both technical advances and conceptual ones beyond anything we can now even dream of.
The picture of “classical infantile autism” is a formidable one. Most people—and, indeed, most physicians—if asked about autism, summon up a picture of a profoundly disabled child, with stereotyped movements, perhaps head-banging; rudimentary language; almost inaccessible: a creature for whom very little future lies in store.
Indeed, in a strange way, most people speak only of autistic children and never of autistic adults, as if the children somehow just vanished from the earth. But though there may indeed be a devastating picture at the age of three, some autistic youngsters, contrary to expectations, may go on to develop fair language, a modicum of social skills, and even high intellectual achievements; they may develop into autonomous human beings, capable of a life that may at least appear full and normal—even though, beneath it, there may remain a persistent, and even profound, autistic singularity. Asperger had a clearer idea of this possibility than Kanner; hence we now speak of such “high functioning” autistic individuals as having Asperger’s syndrome. The ultimate difference, perhaps, is this: people with Asperger’s syndrome can tell us of their experiences, their inner feelings and states, whereas those with classical autism cannot. With classical autism, there is no “window,” and we can only infer. With Asperger’s syndrome there is self-consciousness and at least some power to introspect and report.
Whether Asperger’s syndrome is radically different from classical infantile autism (in a child of three, all forms of autism may look the same) or whether there is a continuum from the severest cases of infantile autism (accompanied, perhaps, by retardation and various neurological problems) to the most gifted, high-functioning individuals, is a matter of dispute. (Isabelle Rapin, a neurologist who specializes in autism, stresses that the two conditions may be separate at the biological level even if they are sometimes similar at the behavioral level.) It is also unclear whether this continuum should be extended to include the possession of isolated “autistic traits”—peculiar, intense preoccupations and fixations, often combined with relative social withdrawal or remoteness—such as one encounters in any number of people conventionally called “normal,” or seen, at most, as a little odd, eccentric, pedantic, or reclusive.
The cause of autism has also been a matter of dispute. Its incidence is about one in a thousand, and it occurs throughout the world, its features remarkably consistent even in extremely different cultures. It is often not recognized in the first year of life, but tends to become obvious in the second or third year. Though Asperger regarded it as a biological defect of affective contact—innate, inborn, analogous to a physical or intellectual defect—Kanner tended to view it as a psychogenic disorder, a reflection of bad parenting, and most especially of a chillingly remote, often professional “refrigerator mother.” At this time, autism was often regarded as “defensive” in nature, or confused with “childhood schizophrenia.” A whole generation of parents—mothers, particularly—were made to feel guilty for the autism of their children. It was only in the nineteen-sixties that this trend began to reverse, and the organic nature of autism to be fully accepted. (Bernard Rimland’s 1964 text, “Infantile Autism,” played an important part here.)
That the disposition to autism is biological is no longer in doubt, nor the increasing evidence that it is, in some cases, genetic. Genetically, autism is heterogeneous—it is sometimes dominant, sometimes recessive. It is much more common in males. The genetic form may be associated, in the affected individual or the family, with other genetic disorders, such as dyslexia, attention-deficit disorder, obsessive-compulsive disorder, or Tourette’s syndrome. But autism may also be acquired. This was first realized in the nineteen-sixties, with the epidemic of rubella, when a large number of babies exposed to this prenatally went on to develop autism. It remains unclear whether the so-called regressive forms of autism—with sometimes abrupt losses of language and social behavior in two- to four-year-olds who had previously been developing relatively normally—are genetically or environmentally caused. Autism may be a consequence of metabolic problems (such as phenylketonuria) or mechanical ones (such as hydrocephalus). It is peculiarly apt to occur (along with many other neurological problems) in tuberous sclerosis and Rett’s syndrome. Autism, or autism-like syndromes, may develop even in adult life, though infrequently, especially after certain forms of encephalitis. (Some of my “Awakenings” patients, I think, had elements of autism, too.) And yet the parents of an autistic child, who find their infant receding from them, becoming remote, inaccessible, unresponsive, may still be tempted to blame themselves. They may find themselves struggling to relate to and love a child who, seemingly, no longer loves them back. They may make superhuman efforts to get through, to hold on to a child who inhabits some unimaginable, alien world; and yet all their efforts may seem to be in vain.
The history of autism, indeed, has been in part a desperate search for, and promotion of, “breakthroughs” of various sorts. One father of an autistic boy expressed this to me with some bitterness: “They come up with a new ‘miracle’ every four years—first it was elimination diets, then magnesium and vitamin B6, then forced holding, then operant conditioning and behavior modification—now all the excitement is about auditory desensitization and F.C.” Facilitated communication, which has been widely publicized, is based on the notion that if the hand or arm of a nonverbal autistic child is supported by a “facilitator,” the child may then be able to communicate by typing, or using an electronic communicator or a letter board. This technique was originally used, with considerable success, in children with cerebral palsy, in whom motor difficulties may make it impossible to speak. But autism is not simply a motor problem, like cerebral palsy; it is infinitely more complex. And yet the most extravagant claims have been made for the powers of F.C. in autistic people, too (that previously nonlinguistic children, for instance, have written entire autobiographies), and its proponents range from enthusiastic to evangelical. But rigorous testing suggests that, while F.C. can be useful for children with cerebral palsy or juvenile parkinsonism, its use with autistic children is much more dubious, and that in many cases the facilitator unconsciously guides the child’s hand.
This is not to say that some forms of intervention should not be tried. It is possible that even such methods as F.C. may provide the child with a huge amount of attention and structure that may be helpful. One of the deep frustrations in teaching autistic children must be the great unpredictability in outcome, so that some will do relatively well while others remain unreachable.
No two people with autism are the same; its precise form or expression is different in every case. Moreover, there may be a most intricate (and potentially creative) interaction between the autistic traits and the other qualities of the individual. So, while a single glance may suffice for clinical diagnosis, if we hope to understand the autistic individual, nothing less than a total biography will do.
My own first experience with the autistic was in a grim ward in a state hospital in the mid-sixties. Many of these patients, perhaps a majority, were also retarded; many had seizures; many had violent self-abusive behaviors, such as head-banging; many had other neurological problems. These worst-off patients tended to be multiply handicapped in addition to their autism (and several had been traumatized by abuse). And yet, even in this population, there were sometimes “islands of ability,” occasionally spectacular talents, shining through the devastation, precisely as Kanner and Asperger had described—remarkable numerical or graphic powers, for instance. It was these special talents, seemingly isolated from the rest of the mind and personality, and maintained by a passionate, intensely focussed fixation or motivation—these so-called savant syndromes—that engaged my special interest, and which I explored most deeply at the time. And even in this population, of the seemingly hopeless, there were some who responded to individual attention. One young patient, nonverbal, responded to music and danced; another, after some weeks, started to play pool with me, and later, in the botanical garden, said his first word—“dandelion.” Many of these patients, born in the nineteen-forties or early fifties, had not even been diagnosed as autistic when young, but had been lumped together indiscriminately with the retarded and psychotic, and warehoused in huge institutions since early childhood. This is probably how the severely autistic have been treated for centuries. It has only been in the last two decades or so that the picture for such youngsters has decisively changed, with increasing medical and educational awareness of their special strengths and problems, and the widespread introduction of special schools and camps for autistic children.
Visiting a few of these during August, I had seen a variety of children, some intelligent, some mildly retarded, some outgoing, some timid, all with their own individual personalities. At one such school, as I approached, I had seen some children in the playground, swinging and playing ball. How normal, I thought—but when I got closer I saw one child swinging obsessively in terrifying semicircles, as high as the swing would go; another throwing a small ball monotonously from hand to hand; another spinning on a roundabout, around and around; another not building with bricks but lining them up endlessly, in neat, monotonous rows. All were engaged in solitary, repetitive activities; none was really playing, or playing with any of the others. Some of the children inside, when not in classes, would rock back and forth; some would flap their hands or jabber unintelligibly. Occasionally, one of the teachers told me, a few of the children would have sudden panics or rages, and scream or hit out uncontrollably. Some of the children would echo any words that were spoken to them. One boy apparently had an entire television show by heart, and would “replay” it all day, in a peculiar loud voice. At Camp Winston, in Ontario, an attractive six-year-old boy had been given a pair of scissors and was cutting minute “H”s, a fraction of an inch high, each perfect, from a piece of paper. Most of the children looked physically normal—it was their remoteness, their inaccessibility, that was so uncanny.
Some, in adolescence, were starting to emerge—to speak fluently, to learn social skills (much more difficult for such children than any academic learning), to create social surfaces they could present to the world.
Without special schooling—schooling that for many had started in the nursery or at home—these autistic youngsters, despite their often good intelligence and background, might have remained profoundly isolated and disabled. They had certainly learned, many of them, to “operate” after a fashion, to show at least a formal or external recognition of social conventions—and yet the very formality or externality of their behavior was itself disconcerting. I felt this especially at one school I visited, where children would stick out rigid hands and say in loud, unmodulated voices, “Good morning my name is Peter . . . I am very well thank you how are you,” without any punctuation or intonation, affect or tone, in a sort of litany. Would any of them, I wondered, ever achieve true autonomy? Use their social automatisms pragmatically, as a way of functioning in the world, but, beyond this, achieve a true inwardness of their own, perhaps a profoundly different inner life, of an autistic sort—perhaps an inner life known or shown only to a few others?
Uta Frith has written, in her book “Autism: Explaining the Enigma,” “Autism . . . does not go away . . . Nevertheless, autistic people can, and often do, compensate for their handicap to a remarkable degree. [But] there remains a persistent deficit . . . something that cannot be corrected or substituted.” She also implies, in a speculative mood, that there may be a reverse side to this “something,” a sort of moral or intellectual intensity or purity, so far removed from the normal as to seem noble, ridiculous, or fearful to the rest of us. She wonders, in this regard, about the blessed fools of old Russia, about the ingenuous Brother Juniper, an early follower of St. Francis, and, interestingly, about Sherlock Holmes, with his oddness, his peculiar fixations—his “little monograph on the ashes of 140 different varieties of pipe, cigar and cigarette tobacco,” his “clear powers of observation and deduction, unclouded by the everyday emotions of ordinary people,” and the extreme unconventionality that often allows him to solve a case that the police, with their more conventional minds, are unable to solve. Asperger himself wrote of “autistic intelligence,” and saw it as a sort of intelligence scarcely touched by tradition and culture—unconventional, unorthodox, strangely “pure” and original, akin to the intelligence of true creativity.
Dr. Frith, when we met in London, expanded on these themes, and said I must be sure to visit one of the most remarkable autistic people she knew—to see her at work and at home, to spend time with her. “Go see Temple,” Dr. Frith said as I left her office.
I had, of course, heard of Temple Grandin—everyone interested in autism has heard of her—and had read her autobiography, “Emergence: Labeled Autistic,” when it came out, in 1986. When I first read the book, I could not help being suspicious of it: the autistic mind, it was supposed at that time, was incapable of self-understanding and understanding others, and therefore of authentic introspection and retrospection. How could an autistic person write an autobiography? It seemed a contradiction in terms. When I observed that the book had been written in collaboration with a writer, Margaret Scariano, I wondered whether some of its fine and unexpected qualities—its coherence, its poignancy, its often “normal” tone—might in fact be due to her. Such suspicions have continued to be voiced, in regard to Grandin’s book and to autistic autobiographies in general, but as I read Temple’s papers (and her many autobiographical articles) I found a detail and consistency, a directness, that changed my mind.
Reading her autobiography and her articles, one gets a feeling of how strange, how different she was as a child, how far removed from “normal.” At six months, she started to stiffen in her mother’s arms, at ten months to claw her “like a trapped animal.” Normal contact was almost impossible in these circumstances. Temple describes her world as one of sensations heightened, sometimes, to an excruciating degree (and inhibited, sometimes to annihilation): she speaks of her ears, at the age of two or three, as helpless microphones, transmitting everything, irrespective of relevance, at full, overwhelming volume—and there was an equal lack of modulation in all her senses. She showed an intense interest in odors and a remarkable sense of smell. She was subject to sudden impulses and, when these were frustrated, violent rage. She perceived none of the usual rules and codes of human relationship. She lived, sometimes raged, inconceivably disorganized, in a world of unbridled chaos. In her third year, she became destructive and violent:
Normal children use clay for modelling; I used my feces and then spread my creations all over the room. I chewed up puzzles and spit the cardboard mush out on the floor. I had a violent temper, and when thwarted, I’d throw anything handy—a museum quality vase or leftover feces. I screamed continually . . .
And yet, like many autistic children, she soon developed an immense power of concentration, a selectivity of attention so intense that it could create a world of its own, a place of calm and order, in the chaos and tumult: “I could sit on the beach for hours dribbling sand through my fingers and fashioning miniature mountains,” she writes. “Each particle of sand intrigued me as though I were a scientist looking through a microscope. Other times I scrutinized each line in my finger, following one as if it were a road on a map.” Or she would spin, or spin a coin, so raptly that she saw and heard nothing else. “People around me were transparent. . . . Even a sudden loud noise didn’t startle me from my world.”
At three, she was taken to a neurologist, and the diagnosis of autism was made; it was hinted that lifelong institutionalization would probably be necessary. The total absence of speech at this age seemed especially ominous.
How, I had to wonder, had she ever moved from this almost unintelligible childhood, with its chaos, its fixations, its inaccessibility, its violence—this fierce and desperate state, which had almost led to her institutionalization at the age of three—to the successful biologist and engineer I was going to see?
I phoned Temple from the Denver airport to reconfirm our meeting—it was conceivable, I thought, that she might be somewhat inflexible about arrangements, so time and place should be set as definitely as possible. It was an hour and a quarter’s drive to Fort Collins, Temple said, and she provided minute directions for finding her office at Colorado State University, where she is an assistant professor in the Animal Sciences Department. At one point, I missed a detail, and asked Temple to repeat it, and was startled when she repeated the entire directional litany—several minutes’ worth—in virtually the same words. It seemed as if the directions had to be given as they were held in Temple’s mind, entire—that they had fused into a fixed association or program, and could no longer be separated into their components. One instruction, however, had to be modified. She had told me at first that I should turn right onto College Street at a particular intersection marked by a Taco Bell restaurant. In her second set of directions, Temple added an aside here, said the Taco Bell had recently had a facelift and been housed in a fake cottage, and no longer looked in the least “bellish.” I was struck by the charming, whimsical adjective “bellish”—autistic people are often called humorless, unimaginative, and “bellish” was surely an original concoction, a spontaneous and delightful image.
I made my way to the university campus and located the Animal Sciences Building, where Temple was waiting to greet me. She is a tall, strongly built woman in her mid-forties; she was wearing jeans, a knit shirt, Western boots, her habitual dress. Her clothing, her appearance, her manner were plain, frank, and forthright; I had the impression of a sturdy, no-nonsense cattlewoman, with an indifference to social conventions, appearance, or ornament, an absence of frills, an absolute directness of manner and mind. When she raised her arm in greeting, the arm went too high, seemed to get caught for a moment in a sort of spasm or fixed posture—a hint, an echo, of the stereotypies she once had. Then she gave me a strong handshake and led the way down to her office. (Her gait seemed to me slightly clumsy or uncouth, as is often the case with autistic adults. Temple attributes this to a simple ataxia associated with impaired development of the vestibular system and part of the cerebellum. Later I did a brief neurological exam, focussing on her cerebellar function and balance; I did indeed find a little ataxia, but insufficient, I thought, to explain her odd gait.)
She sat me down with little ceremony, no preliminaries, no social niceties, no small talk about my trip or how I liked Colorado. Her office, crowded with papers, with work done and to do, could have been that of any academic, with photographs of her projects on the wall, and animal knickknacks she had picked up on her travels. She plunged straight into talking of her work, speaking of her early interests in psychology and animal behavior, how they were connected with self-observation and a sense of her own needs as an autistic person, and how this had joined with the visualizing and engineering part of her mind to point her toward the special field she had made her own: the design of farms, feedlots, corrals, slaughterhouses—systems of many sorts for animal management.
She handed me a book containing some of the layouts she had developed over the years—the book was titled “Beef Cattle Behaviors, Handling, and Facilities Design”—and I admired the complex and beautiful designs inside, and the logical presentation of the book, starting with diagrams of cattle and sheep and hog behavior and moving through designs of corrals to ever more complex ranch and feedlot facilities.
She spoke well and clearly, but with a certain unstoppable impetus and fixity. A sentence, a paragraph, once started, had to be completed; nothing was left implicit, hanging in the air.
I was feeling somewhat exhausted, hungry, and thirsty—I had been travelling all day and had missed lunch—and I kept hoping Temple would notice and offer me some coffee. She did not, so, after an hour, almost fainting under the barrage of her overexplicit and relentless sentences, and the need to attend to several things at once (not only what she was saying, which was often complex and unfamiliar, but also her mental processes, the sort of person she was), I finally asked for some coffee. There was no “I’m sorry, I should have offered you some before,” no intermediacy, no social junction. Instead, she immediately took me to a coffeepot that was kept brewing in the secretaries’ office upstairs. She introduced me to the secretaries in a somewhat brusque manner, giving me the feeling, once again, of someone who had learned, roughly, “how to behave” in such situations without having much personal perception of how other people felt—the nuances, the social subtleties involved.
“Time to get some dinner,” Temple suddenly announced after we had spent another hour in her office. “We eat early in the West.” We went to a nearby Western restaurant, one with swinging doors, and with guns and cattle horns on the walls—it was already crowded, as Temple had said it would be, at five in the afternoon—and we ordered a classic Western meal of ribs and beer. We ate heartily and talked throughout the meal about the technical aspects of Temple’s work and the ways in which she sets out every design, every problem, visually, in her mind. As we left the restaurant, I suggested we go for a walk, and Temple took me out to a meadow along an old railway line. The day was cooling rapidly—we were at five thousand feet—and in the long evening light gnats darned the air and crickets were stridulating all around us. I found some horsetails (one of my favorite plants) in a muddy patch below the tracks and became excited about them. Temple glanced at them, said “Equisetum,” but did not seem stirred by them, as I was.
On the plane to Denver, I had been reading a remarkable piece of writing by a highly gifted, normal nine-year-old—a fairy story she had created, with a wonderful sense of myth, a whole world of magic, animism, and cosmogonies. What, I wondered as we walked through the horsetails, of Temple’s cosmogony? How did she respond to myths, or to dramas? How much did they carry meaning for her? I asked her about the Greek myths. She said that she had read many of them as a child, and that she thought of Icarus in particular—how he had flown too near the sun and his wings had melted and he had plummeted to his death. “I understand Nemesis and Hubris,” she said. But the loves of the gods, I ascertained, left her unmoved—and puzzled. It was similar with Shakespeare’s plays. She was bewildered, she said, by Romeo and Juliet (“I never knew what they were up to”), and with “Hamlet” she got lost with the back-and-forth of the play. Though she ascribed these problems to “sequencing difficulties,” they seemed to arise from her failure to empathize with the characters, to follow the intricate play of motive and intention. She said that she could understand “simple, strong, universal” emotions but was stumped by more complex emotions and the games people play. “Much of the time,” she said, “I feel like an anthropologist on Mars.”
She was at pains to keep her own life simple, she said, and to make everything very clear and explicit. She had built up a vast library of experiences over the years, she went on. They were like a library of videotapes, which she could play in her mind and inspect at any time—“videos” of how people behaved in different circumstances. She would play these over and over again, and learn, by degrees, to correlate what she saw, so that she could then predict how people in similar circumstances might act. She had complemented her experience by constant reading, including reading of trade journals, and the Wall Street Journal—all of which enlarged her knowledge of the species. “It is strictly a logical process,” she explained.
In one plant she had designed, she said, there had been repeated breakdowns of the machinery, but these occurred only when a particular man, John, was in the room. She “correlated” these incidents and inferred at last that John must be sabotaging the equipment. “I had to learn to be suspicious, I had to learn it cognitively. I could put two and two together, but I couldn’t see the jealous look on his face.” Such incidents have not been uncommon in her life: “It bends some people out of shape that this autistic weirdo can come in and design all the equipment. They want the equipment, but it galls them that they can’t do it themselves, but that Tom”—an engineering colleague—“and I can, that we’ve got hundred-thousand-dollar Sun workstations in our heads.” In her ingenuousness and gullibility, Temple was at first a target for all sorts of tricks and exploitations; this sort of innocence or guilelessness, arising not from moral virtue but from failure to understand dissembling and pretense (“the dirty devices of the world,” in Traherne’s phrase), is almost universal among the autistic. But over the years Temple has learned, in her indirect way, by inspecting her “library,” some of the ways of the world. She has, in fact, been able to found her own company and to work as a freelance consultant to and designer of animal facilities all over the world. By professional standards, she is extraordinarily successful, but other human interactions—social, sexual—she cannot “get.” “My work is my life,” she told me several times. “There is not that much else.”
There seemed to me pain, renunciation, resolution, and acceptance all mixed together in her voice, and these are the feelings that sound through her writings. In one article she writes:
I do not fit in with the social life of my town or university. Almost all of my social contacts are with livestock people or people interested in autism. Most of my Friday and Saturday nights are spent writing papers and drawing. My interests are factual and my recreational reading consists mostly of science and livestock publications. I have little interest in novels with complicated interpersonal relationships, because I am unable to remember the sequence of events. Detailed descriptions of new technologies in science fiction or descriptions of exotic places are much more interesting. My life would be horrible if I did not have my challenging career.
Early the next morning, a Saturday, Temple picked me up in her four-wheel-drive, a rugged vehicle she drives all over the West to visit farms, ranches, corrals, and meat plants. As we headed for her house, I quizzed her about the work she had done for her Ph.D.; her thesis was on the effects of enriched and impoverished environments on the development of pigs’ brains. She told me about the great differences that developed between the two groups—how sociable and delightful the “enriched” pigs became, how hyperexcitable and aggressive (and almost “autistic”) the “impoverished” ones were by contrast. (She wondered whether impoverishment of experience was not a contributing factor in human autism.) “I got to love my enriched pigs,” she said. “I was very attached. I was so attached I couldn’t kill them.” The animals had to be sacrificed at the end of the experiment so their brains could be examined. She described how the pigs, at the end, trusting her, let her lead them on their last walk, and how she had calmed them, by stroking them and talking to them, while they were killed. She was very distressed at their deaths—“I wept and wept.”
She had just finished the story when we arrived at her home—a small two-story town house, some distance from the campus. Downstairs was comfortable, with the usual amenities—a sofa, armchairs, a television, pictures on the wall—but I had the sense that it was rarely used. There was an immense sepia print of her grandfather’s farm in Grandin, North Dakota, in 1880; her other grandfather, she told me, had invented the automatic pilot for planes. These two were the progenitors, she feels, of her agricultural and engineering talents. Upstairs was her study, with her typewriter (but no word processor), absolutely bursting with manuscripts and books—books everywhere, spilling out of the study into every room in the house. (My own little house was once described as “a machine for working,” and I had a somewhat similar impression of Temple’s.) On one wall was a large cowhide with a huge collection of identity badges and caps, from the hundreds of conferences she has lectured at. I was amused to see, side by side, an I.D. from the American Meat Institute and one from the American Psychiatric Association. Temple has published over a hundred papers, divided between those on animal behavior and facilities management and those on autism. The intimate blending of the two was epitomized by the medley of badges side by side.
Finally, without diffidence or embarrassment (emotions unknown to her), Temple showed me her bedroom, an austere room with whitewashed walls and a single bed, and, next to the bed, a very large, strange-looking object. “What is that?” I asked.
“That’s my squeeze machine,” Temple replied. “Some people call it my hug machine.”
The device had two heavy, slanting wooden sides, perhaps four by three feet each, pleasantly upholstered with a thick, soft padding. They were joined by hinges to a long, narrow bottom board, to create a V-shaped, body-sized trough. There was a complex control box at one end, with heavy-duty tubes leading off to another device, in a closet. Temple showed me this as well. “It’s an industrial compressor,” she said, “the kind they use for filling tires.”
“And what does this do?”
“It exerts a firm but comfortable pressure on the body, from the shoulders to the knees,” Temple said. “Either a steady pressure or a variable one or a pulsating one, as you wish,” she added. “You crawl into it—I’ll show you—and turn the compressor on, and you have all the controls in your hand, here, right in front of you.”
When I asked her why one should seek to submit oneself to such pressure, she told me. When she was a little girl, she said, she had longed to be hugged, but had at the same time been terrified of all contact. When she was hugged, especially by a favorite (and vast) aunt, she felt overwhelmed, overcome by sensation; she had a sense of peacefulness and pleasure, but also of terror and engulfment. She started to have daydreams—she was just five at the time—of a magic machine which could squeeze her powerfully but gently, in a huglike way, and in a way entirely commanded and controlled by her. Years later, as an adolescent, she had seen a picture of a squeeze chute designed to hold or restrain calves, and realized that that was it: a little modification to make it suitable for human use, and it could be her magic machine. She had considered other devices—inflatable suits, which could exert an even pressure all over the body—but the squeeze chute, in its simplicity, was quite irresistible.
Being of a practical turn of mind, she soon made her fantasy come true. The early models were crude, with some snags and glitches, but she soon evolved a totally comfortable, predictable system, capable of administering a “hug” with whatever parameters she desired. Her squeeze machine had worked exactly as she hoped, yielding the very sense of calmness and pleasure she had dreamed of since childhood. She could not have gone through the stormy days of college without her squeeze machine, she said. She could not turn to human beings for solace and comfort, but she could always turn to it. The machine, which she neither exhibited nor concealed but kept openly in her room at college, excited derision and suspicion, and was seen by psychiatrists as a “regression” or “fixation”—something that needed to be psychoanalyzed and resolved. With her characteristic stubbornness, tenacity, single-mindedness, and bravery—along with a complete absence of inhibition or hesitation—Temple ignored all these comments and reactions, and determined to find a scientific “validation” of her feelings.
Both before and after writing her doctoral thesis, she made a systematic investigation of the effects of deep pressure in autistic people, college students, and animals, and last year a paper of hers on this was published in the Journal of Child and Adolescent Psychopharmacology. Today, her squeeze machine, variously modified, is receiving extensive clinical trials. She has also become the world’s foremost designer of squeeze chutes for cattle, and has published, in the meat-industry and veterinary literature, many articles on the theory and practice of humane restraint and gentle holding.