Temple Grandin: Explaining the Mystery
of Autism
Susan Bobb '00
"…I enjoyed twirling myself around or spinning coins or lids round and round and round. Intensely preoccupied with the movement of the spinning coin or lid, I saw nothing or heard nothing. People around me were transparent." -Temple Grandin, Emergence, Labeled Autistic (p. 23).
Autism is a rare developmental disorder, occurring in 7 to 13 cases per 10, 000 persons (Mash & Barkley, 1996). Leo Kanner (1943) was one of the first to describe the syndrome, delineating the autistic aloneness, the desire for routine, and the inability to relate to others which typically characterize autism. Kanner observed of one autistic boy that "he seem[ed] almost to draw into his shell and live within himself" (p. 218). In addition, autistic children often exhibit self-destructive behavior, beating their heads against walls and throwing tantrums. Echolalia as well as ritualistic and self-stimulatory acts are also prevalent.
While syndromes of the disorder are well documented and studied, the actual causes of autism are difficult to pinpoint. Initially it was thought that autism was psychogenic, caused by cold and distant mothers. Bettelheim (1967) compared syndromes of autistic children to those of World War II concentration camp survivors and concluded that autism was due to trauma. Today, however, biological and genetic factors are more frequently thought to be the basis of autism. Research seems to support that parental education, occupation, race, and religion have no effect on the prevalence of autism (Murray, 1996). Other research suggests that autistic children are unable to develop a "theory of mind," the capacity to understand another individual’s mental state (Baron-Cohen et al., 1985; Ozonoff & McEvoy, 1994). This inability to sense that other people’s minds are different than one’s own causes the deficiencies in social skills and communication. Genetic studies indicate a higher incidence of autism among siblings and twins. Neurological studies have also linked autism to abnormal brain wavelengths, underdeveloped cerebellums and epileptic seizures.
Because causes of autism are not really known, treatment of the syndrome is also very difficult. The great variety of symptoms and abnormalities in autistics makes it hard to find one effective treatment for a diagnosed autistic individual. Ivar Lovass documented some success with intensive behavioral treatment. But behavioral treatment requires the heavy involvement of both therapists and parents, and reinforcement is difficult because the self-stimulatory behavior of the autistic interferes with the therapy. Various drugs seem to mitigate the symptomatic effects of autism by normalizing neurotransmitter levels of norepinephrine, serotonin, and dopamine. Yet core symptoms of autism remained unaltered (Murray, 1996). Recent news reports suggested treatment with the hormone secretin could be the long sought-after miracle cure for autism. However, new research largely discounts secretin’s effectiveness, finding that it only works in isolated cases, specifically in autistics with intestinal/dietary problems (Larson, 1997).
Temple Grandin, one of the foremost leaders in autistic studies, is diagnosed with autism herself. She attributes her high functionality to early intervention (Edelson, 1996). Grandin has a Ph.D. in animal science from the University of Illinois and designs and inspects livestock handling facilities. She has written two books on her life with autism, Emergence: Labeled Autistic (1986) and Thinking in Pictures (1995), both of which are becoming part of the classic literature on autism and afford an intimate glimpse into its syndromes and treatment.
Grandin was diagnosed with autism at the age of two and a half. She considers herself fortunate that her doctor suggested traditional treatment instead of placing her in an institution (Grandin, Inside View). Her parents then organized a stringent schedule of activities and therapy in order to keep her "connected to the world" (Grandin, April 1998). She spent 45 minutes, five days a week, in speech therapy, and then engaged daily in three to four hours of games and activities with her sister and nanny. Minding her manners and behaving were also a part of her structured life (Grandin, April 1998). Grandin attended a normal elementary school, and because of tantrums she later changed from the local high school to a country boarding school intended for "gifted children with emotional problems" (Grandin, Inside View).
Perhaps one of Temple Grandin’s most innovative designs is her "squeeze machine" that she developed at the age of 18 in order to mitigate autistic symptoms. In "An Inside View of Autism," Grandin observes that even as a young child she would seek out deep pressure stimulation. Hugs and being held, however, over-stimulated her. Instead, she would lie underneath sofa cushions and have her sister sit on top of them. A visit to her aunt’s cattle ranch triggered the idea to build her first "squeeze machine": Grandin observed that cattle passing through a squeeze shoot would calm down. Her squeeze machine has a similar effect, relaxing her nerves and comforting her as if she were being held (Grandin, Inside View). While school psychologists wanted to take her machine away from her, her high school science teacher encouraged her to figure out why it worked for her. Grandin credits this teacher’s motivation for starting her towards a career in livestock handling and the sciences (Grandin, Inside View).
Interestingly, Temple Grandin’s Hug Machine is now used in several programs for treatment of autistic individuals. The Hug Machine is made of
"two padded side-boards which are hinged to form a V-shape. The user lies down or squats inside the V. By using a lever, the user engages an air cylinder, which pushed the side-boards together. This action provides the deep pressure stimulation evenly across the lateral parts of the body" (Edelson, Hug Machine).
The ability to self control the amount of pressure is central to why the Hug Machine works. Creedon (1995) suggests the Hug Machine be used by autistic students who demonstrate tactile defensiveness and have difficulty calming themselves down and controlling their level of stimulation. Grandin noted that using the machine helped her interactive skills with others, and with animals.(Grandin, 1984). One reason for why the machine may work is that people with autism have difficulty empathizing because they struggle with giving or receiving physical comfort. The hug machine introduces autistic people to comforting touch through the squeezing of the machine. In response, they can then give similar soothing comfort to others (Grandin, Inside View).
The hug machine touches on a common difficulty found in persons suffering from autism – many display sensory problems, exhibiting extreme sensitivity to visual, auditory and tactile experiences. In Temple Grandin’s case, high-pitched noises intensely hurt her ears, movement of automatic sliding doors captivated her, and the touch of others over-stimulated her. Clothing, especially new clothing, felt torturous on her skin. Even hair washing irritated her (Grandin, February 1996). Grandin suggests that children displaying this tactile sensitivity can be desensitized by stroking them firmly with cloths of various textures according to methods by Ayres (1979) (Grandin, February 1996).
Despite her struggle with autism, Temple Grandin has "gained entry" into the outside world. She credits a gradual transition, the involvement of mentors, and a skills-appropriate career with her successful adaptation. During three of her college years she would visit a local meat-packing plant, learning how the industry operated. This progressive exposure, combined with summers at her aunt’s ranch, accustomed Grandin to the cattle industry. (Grandin, Inside View). She stresses the importance of this same approach for any autistic’s successful transition to the work world. Without this gradual transition, entering work will most likely be very difficult, maybe impossible, because the person with autism, and the person’s employer/coworkers are not given an adequate adjustment period (Grandin, Making the Transition).
How do people with autism find an occupation that will suit their talents and needs? In her articles, Grandin often mentions the idea of using a fixation, which people with autism frequently develop, as a means of stimulating interest in an area (science, technology etc.) Fixations can be any preoccupation with one particular subject. For example, one way of taking advantage of a fixation on trains would be to teach math by using math problems with trains (Grandin, April 1998). In her own life, Grandin was fixated on cattle shoots. Her high school science teacher used this fixation to encourage her to study psychology and science (Grandin, Inside View) which also developed her interest in cattle handling (Grandin, February 1996).
One of the greatest difficulties people with autism face when starting a job is their inability to read social cues. Grandin relates how her first boss insisted she go out with his secretaries to buy new clothes, and told her she had to take better care of her hygiene (e.g. wear deodorant) (Grandin, Making the Transition). Because of their lack in social skills, Grandin counsels adults with autism to avoid jobs which require a lot of interaction with people (Grandin, November 1999; Grandin, Making the Transition). Another guideline she gives is for the individual to sell his/her work, not personality. One way of doing this is by creating a portfolio which will illustrate the individual’s talent. Interviews should be avoided if at all possible since it will be difficult for the personnel department to see past the social difficulties that a person with autism deals with (Grandin, Making the Transition).
In coping with her own social difficulties, Grandin found that anti-depressants improved her difficulties in speech, sociability, anxiety, and posture. Grandin credits the longtime use of anti-depressants for her more fluid speech and mannerisms and reports that friends who have not seen her for long periods of time have noted a remarkable difference in her comportment (Grandin, Inside View). But Grandin also warns that people on anti-depressants are often over-medicated: there is the temptation to increase dosage if effectiveness wears off. Increasing dosage could have dangerous side-effects, however, compounding problems such as irritability and insomnia. Instead of increasing the dose, the same low dose should be maintained. In most cases, effectiveness will resume, and the relapse will taper on its own. Grandin points out that she has been on the same dose of medication for fifteen years (Edelson, 1996).
Even though her ability to interact with others has improved over the years, Grandin prefers to keep a low social profile. Most of her social contacts are built through her work associations. She has also developed a set of rules to help guide her social interactions. She categorizes behavior into "courtesy rules," "illegal but not bad things," "really bad things," and "sins of the system" (Grandin, February 1999). Illegal drug use, and sexual misbehavior are both examples of Sins of the System, and Grandin has made it a point never to commit a Sin of the System. For this reason, she also chose celibacy, which helps her to avoid unnecessary problems. Poignantly, Grandin states: "I am what I do and think instead of what I feel" (Grandin, February 1999).
Temple Grandin’s many articles and her books demonstrate the wide variety of hurdles she has coped with throughout her life. Having made a successful transition into the "normal" world, Grandin has found herself in the optimal position to share her inside view with society at large. Perhaps one of her greatest advantages is her objectivity in representation: her writing is marked with scientific clarity and unaffected directness. She deals candidly with sensitive issues such as emotions, sexuality, and questions on whether people with autism can lead independent lives. This honesty makes her writings effective both as a resource for parents and clinicians seeking effective treatments, and as a tool for society at large, educating them to disband common misconceptions about autism.
Bibliography
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