Interview with Temple Grandin about her life, living with Autism


Temple Grandin, Ph.D.
Assistant Professor
Colorado State University
Fort Collins, Colorado 80523, USA
(Updated June 2000)



In this paper, I will describe my experiences with Autism. The main areas I will cover are visual thinking, sensory problems, and difficulties with communication. After I describe my experiences, I will discuss the similarities and differences between myself and other people with an Autism diagnosis. There is probably a continuum of Autism subtypes that vary in the pattern of neurological abnormality and the severity of neurological problems.



My hearing is like having a sound amplifier set on maximum loudness. My ears are like a microphone that picks up and amplifies sound. I have two choices: 1) turn my ears on and get deluged with sound or 2) shut my ears off. Mother told me that sometimes I acted like I was deaf. Hearing tests indicated that my hearing was normal. I can't modulate incoming auditory stimulation. I discovered that I could shut out painful sounds by engaging in rhythmic stereotypical autistic behavior. Sometimes I "tune out". For example, I will be listening to a favorite song on the car radio and then later realize that I tuned out and missed half of the song. In college, I had to constantly take notes to prevent tuning out.


I am unable to talk on the telephone in a noisy office or airport. Other people can use the telephones in a noisy airport, but I cannot. If I try to screen out the background noise, I also screen out the voice on the telephone. Autistic people with more severe auditory processing problems are unable to hear a conversation in a relatively quiet hotel lobby.


Autistic people must be protected from noises that hurt their ears. Sudden loud noises hurt my ears--like a dentist's drill hitting a nerve (Grandin 1992a). A gifted, autistic man from Portugal wrote: "I jumped out of my skin when animals made noises" (White and White 1987). An autistic child will cover his or her ears because certain sounds hurt. It is like an excessive startle reaction. A sudden noise (even a relatively faint one) will often make my heart race.


I still dislike places with many different noises, such as shopping centers and sports arenas. High-pitched continuous noise, such as bathroom vent fans or hair dryers, are annoying. I can shut down my hearing and withdraw from most noise, but certain frequencies cannot be shut out. It is impossible for an autistic child to concentrate in a classroom if he or she is bombarded with noises that blast through his or her brain like a jet engine. High-pitched, shrill noises are the worst. A low rumble has no affect, but an exploding firecracker hurts my ears. As a child, my governess used to pop a paper bag to punish me. The sudden, loud noise was torture.


The fear of a noise that hurts the ears is often the cause of many bad behaviors and tantrums. Some autistic children will attempt to break the telephone because they are afraid it will ring. Many bad behaviors are triggered due to anticipation of being subjected to a painful noise. The bad behaviors can occur hours before the noise. Common noises that cause discomfort in many autistic individuals are school bells, fire alarms, score board buzzers in the gym, squealing microphone feedback and chairs scraping on the floor. When I was a child, I feared the ferry boat that took us to our summer vacation home. When the boat's horn blew, I threw myself on the floor and screamed. Autistic children and adults may fear dogs or babies because barking dogs or crying babies may hurt their ears. Dogs and babies are unpredictable, and they can make a hurtful noise without warning.


Children and adults with extreme sound sensitivity may also fear the sound of water flowing or waves (Stehli 1991). Children with less severe auditory sensitivity problems may be attracted to sound and visual stimuli that more severely impaired children tend to avoid. I liked the sound of flowing water and enjoyed pouring water back and forth between orange juice cans; whereas another child may avoid the sound of flowing water. I liked the visual stimulation of watching automatic sliding doors; whereas another child might run and scream when he or she sees an automatic sliding door. A loud vacuum cleaner may cause fear in one autistic child and may be a pleasurable fixation to another child. When I look at moving sliding doors, I get the same pleasurable feeling that used to occur when I engaged in rocking or other stereotypical autistic behaviors. Some autistic individuals can see the flicker of florescent lights. Coleman et al. (1976) found that florescent lights increased repetitive behaviors in some autistic children.



During my travels to many Autism conferences, several parents have reported to me that holding therapy was beneficial. It is not the "cure" that some of its proponents tout, but it has a beneficial affect on some children. In my opinion, the benefits of holding therapy could be obtained through less stressful methods. I cringed when I watched the BBC show, "The Visit," and I am glad I did not have to endure forced holding. Fisher (1989) describes a gentler approach to holding that worked with her daughter.


One mother told me that she gently encouraged her child to tolerate more and more holding, and he responded with increased affection and improved eye contact. Powers and Thorworth (1985) found that eye contact and interest in people improved after a gentler behavioral method was used. In one case, a young boy was held in a light hug until crying lessened. As soon as crying was reduced, the boy was released. Gradually, the amount of holding time was increased.


I believe that the beneficial effects of holding in some children are due to desensitization to touch of the autistic child's nervous system. It is a physiological sensory process that has nothing to do with mother bonding or anger. I completely disagree with Welch (1983) that the child has to become severely distressed for holding to be effective. The sensory problems of Autism are often overlooked. Many autistic people are over sensitive to both sound and touch. Autistic children have problems modulating sensory input (Ornitz 1985).


Autistic Tactile Problems

I pulled away when people tried to hug me, because being touched sent an overwhelming tidal wave of stimulation through my body. I wanted to feel the comforting feeling of being held, but then when somebody held me, the effect on my nervous system was overwhelming. It was an approach-avoid situation, but sensory over stimulation caused the avoidance, not anger or fear as Richer and Zappella (1989) suggest. An autistic man, interviewed by Cesaroni and Garber, stated that touching was not painful, but it was overwhelming and confusing.


Small itches and scratches that most people ignored were torture. A scratchy petticoat was like sand paper rubbing my skin raw. Hair washing was also awful. When mother scrubbed my hair, my scalp hurt. I also had problems with adapting to new types of clothes. It took several days for me to stop feeling a new type of clothing on my body; whereas a normal person adapts to the change from pants to a dress in five minutes. New underwear causes great discomfort, and I have to wash it before I can wear it. Many people with Autism prefer soft cotton against the skin. I also liked long pants, because I disliked the feeling of my legs touching each other.


Sensory Therapy

Therapists have helped many autistic children through gently applying tactile and vestibular stimulation (Ayres 1979; King 1989). One effect of this stimulation is to desensitize the tactile system. This is not a cure, but it has increased speech, affection, and eye contact in some children. It also helps to decrease stereotypical and self-injurious behaviors. The sensory activities are done gently as fun games and are never forced. Strong encouragement and some intrusiveness may be used, but a good therapist knows how far he or she can intrude before the stimulation becomes so overwhelming that the child starts crying. Even intrusive activities are kept fun. During the activities, the therapist will also work on improving speech and establishing eye contact.


Ray et al. (1988) found that a mute child will often start making speech sounds while he or she is swinging in a swing. Swinging stimulates the vestibular system and the defective cerebellum. Spinning in a chair twice a week helps to reduce hyperactivity (Bhatara et al. 1981); and non-contingent vibration will reduce stereotypical behavior (Murphy 1982). Research has also shown that vigorous aerobic exercise reduced maladaptive and stereotypic behavior (Elliot et al. 1994).


Hypersensitivity to touch can be desensitized through firmly but gently stroking a child with different cloth textures (Ayres 1979). The pressure must be firm enough to stimulate deep pressure receptors. Very light touch should be avoided because it increases arousal and excites the nervous system. Vestibular and sensory stimulation also have a beneficial affect on improving affection and social behavior.


Deep pressure stimulation is also calming (Ayres 1979; King 1989) Therapists often roll the children up in mats. Many autistic children will seek deep pressure. Many parents have told me that their children get under the sofa cushions or mattress. A slow, steady application of pressure had a calming affect on me; and a sudden jerky motion tended to cause arousal (Grandin 1992b). Self stimulatory behaviors can be reduced by having an autistic child wear a garment that applies pressure (McClure et al 1991; Zisserman 1992).

Good results can often be obtained with less than an hour of sensory treatment per day. Spending hours and hours each day is not required. If a treatment method is going to be effective with a particular child, it will bring about improvement with reasonable amounts of effort. The effectiveness of sensory treatment will vary from child to child.


Tactile Research

Both human and animal studies indicate that deep pressure is calming and reduces arousal in the nervous system. Takagi and Kobagas (1956) found that pressure applied to both sides of a person's body decreased metabolic rate, pulse rate, and muscle tone. Gently pinching a rabbit's skin with padded clips creates a deactivated EEG reading, relaxed muscle tone, and drowsiness (Kumazawa 1963). Pressure gently applied to both sides of a pig in a padded V trough will induce sleep and relaxation (Grandin et al. 1989). Rubbing and gently pinching a cat's paw will decrease tonic activity in the dorsal column nuclei and the somatosensory cortex (part of the brain that receives touch sensation) (Melzack et al. 1969).


Squeeze Machine

I craved deep pressure stimulation, but I pulled away and stiffened when my overweight aunt hugged me. In my two books (Grandin and Scariano 1986 and Grandin 1995), I describe a squeeze machine I constructed to satisfy my craving for the feeling of being held. The machine was designed so that I could control the amount and duration of the pressure. It was lined with foam rubber and applied pressure over a large area of my body.


Gradually I was able to tolerate the machine holding me. The over sensitivity of my nervous system was slowly reduced. A stimulus that was once overwhelming and aversive had now become pleasurable. Using the machine enabled me to tolerate another person touching me. A partial explanation for the lack of empathy in Autism may be due to an oversensitive nervous system that prevents an autistic child from receiving the comforting tactile stimulation that comes from being hugged. I learned how to pet our cat more gently after I had used the squeeze machine. I had to comfort myself before I could give comfort to the cat. When I handle cattle, I often touch the animals because it helps me to feel gentle towards them. It is important to desensitize an autistic child so that he/she can tolerate comforting touch. I have found that if I use my squeeze machine on a regular basis that I have nicer images in my dreams. Experiencing the comforting feeling of being held makes nasty or mean thoughts go away.


Several squeeze machines are now in use at sensory integration clinics in the United States. Therapists have found that some hyperactive and autistic children will immediately use the machine, and others are so oversensitive to touch that they initially avoid the machine and other activities involving touch, such as finger painting or being rubbed with different cloth textures. Over sensitive children are gently encouraged to engage in tactile activities that they initially avoided. An activity that was initially aversive and overwhelming gradually becomes pleasurable. Activities involving touch become pleasurable when the nervous system becomes desensitized. For example, children who cannot tolerate tooth brushing can be desensitized through gently rubbing them around the mouth.


Animal Reactions

My reaction to being touched was like a wild horse flinching and pulling away. The reactions of an autistic child to touch and a wild horse may be similar. The process of taming a wild animal has many similarities to an autistic child's reaction to touch.


There are two methods that can be used tame a wild horse: 1) forced holding and 2) gradual taming. Both methods work. Forced holding is quicker and more stressful than the somewhat slower gradual taming process. Good horse trainers only use forced holding on extremely young horses.


When forced holding is used on animals, care is taken to avoid excitement. The procedure is done as quietly and gently as possible. The animal is securely tied or held in a livestock restraint device. It is held tightly and is unable to kick or thrash. During the restraint period, the trainer pets and strokes all parts of the animal's body and talks gently to it. Touching every part of the animal's body is an important component of the taming procedure. The animal is released when it is not resisting. Sessions seldom last more than one hour. A disadvantage of this procedure is that forced restraint is stressful.


The taming approach is done more gradually. I have trained sheep to enter a device similar to my squeeze machine repeatedly (Grandin, 1989). The sheep were gradually introduced to the device. At first they just stood in it and then pressure was applied for increasing amounts of time. Horse trainers have found that nervous horses become easier to handle if they are rubbed and brushed frequently. At first the horse may flinch, but gradually it will start relaxing when stroked. Like the autistic child, touching that was initially aversive becomes pleasurable. A stimulus that was once actively avoided is now actively sought out.



In this paper I have concentrated on the sensory aspects of Autism and have not discussed behavioral and cognitive (thinking) factors. Cognitive and behavioral aspects are important, but I concentrated on the sensory aspects because these are often neglected.


Sensory processing problems may explain some autistic behaviors, and differences in cognitive processes may explain others. Cerebellar and brain stem abnormalities are a probable explanation of many sensory problems, but they would not explain cognitive differences, such as concrete thinking and unusual visual spatial skills. The cognitive differences between autistic and normal children are probably due to other brain abnormalities. Autopsies of nine autistic brains revealed abnormalities in the cerebellum, hippocampus, amygdala, and other parts of the limbic system (Bauman 1991, and Bauman and Kemper 1994). These areas are involved with learning and memory. Brain wave (EEG) studies indicated that autistic children have severe abnormalities in their capacity to shift attention between visual and auditory stimuli (Courchesne et al. 1989).


Brain structures that control attention shift are connected to the cerebellar vermis. Abnormalities in attention shifting may be the basis of perseverate (repetitive) behavior and some social deficits. This may possibly explain why treatments that stimulate the cerebellum and certain sensory treatments often improve overall behavior. Further research has shown that the amygdala (emotion center) in the brain is underdeveloped. This may explain some of the social deficits of Autism. Brain scans have revealed that some of the circuits between the frontal cortex and amygdala are not functioning normally (Haznader et al., 1997). This may force a person with Autism to use intellect and logic to make social decisions instead of emotion cues.


Sensory Deprivation Symptoms

The symptoms of sensory deprivation in animals and many autistic symptoms are similar. Animals confined to a barren environment are excitable and engage in stereotypies, self-injury, hyperactivity, and disturbed social relations (Grandin 1989b; Mason 1960; Harlow and Zimmerman 1959). An animal in a barren environment engages in stereotypies in an attempt to stimulate itself.


Why would a leopard in a concrete cell at the zoo and Autism have similarities? From my own experience, I would like to suggest a possible answer. Auditory and tactile input often overwhelmed me. Loud noise hurt my ears. When noise and sensory over stimulation became too intense, I was able to shut off my hearing and retreat into my own world. Possibly the autistic child creates his or her own self-imposed sensory deprivation.


In pulling away, I may not have received stimulation that was required for normal development. Possibly there are secondary central nervous system abnormalities that happen as a result of the autistic child's avoidance of input. The initial sensory processing abnormalities that the child is born with cause the initial avoidance. Autopsy studies indicate that cerebellar abnormalities occur before birth (Bauman 1991, Bauman and Kemper 1994). However, the limbic system which also has abnormalities is not mature until the child is two years old. The possibility of secondary damage to the central nervous system may explain why young children in early intervention education programs have a better prognosis than children who do not receive special treatment.


Animal and human studies show that restriction of sensory input causes the central nervous system to become overly sensitive to stimulation. The effects of early sensory restriction are often long lasting. Placement of a small cup on a person's forearm for one week to block tactile sensations will cause the corresponding area on the opposite arm to become more sensitive (Aftanas and Zubeck 1964). Puppies reared in barren kennels become hyperexcitable, and their brain waves (EEG) still showed signs of over arousal six months after removal from the kennel (Melzack and Burns 1965). The brain waves of autistic children also show signs of high arousal (Hutt et al. 1965). Trimming the whiskers on baby rats will cause the parts of the brain that receive input from the whiskers to become oversensitive (Simon and Land 1987). This abnormality is relatively permanent. The brain areas were still abnormal after the whiskers had grown back.


Perhaps it would be beneficial if autistic babies were gently stroked and "tamed" when they stiffen and pull away. I often wonder if I had received more tactile stimulation as a child, if I would have been less "nervous" as an adult. Handling baby rats produces calmer adults which are more willing to explore a maze (Denenberg et al. 1962; Ehrlich 1959). Tactile stimulation is vital for babies and aids in their development.



Thinking in language and words is alien to me. I think totally in pictures. It is like playing different tapes in a video cassette recorder in my imagination. I used to think that everybody thought in pictures until I questioned many different people about their thinking processes.


I have conducted an informal little cognitive test on many people. They are asked to access their memory of church steeples or cats. An object that is not in the person's immediate surroundings should be used for this visualization procedure. When I do this, I see in my imagination a series of "videos" of different churches or cats I have seen or known. Many "normal" people will see a visual image of a cat, but it is a sort of generalized generic cat image. They usually don't see a series of vivid cat or church "videos" unless they are an artist, parent of an autistic child, or an engineer. My "cat" concept consists of a series of "videos" of cats I have known. There is no generalized cat. If I keep thinking about cats or churches I can manipulate the "video" images. I can put snow on the church roof and imagine what the church grounds look like during the different seasons.


Some people access their "cat" knowledge as auditory or written language. For me, there is no language based information in my memory. To access spoken information, I replay a "video" of the person talking. There are some brilliant people who have little visual thought. One totally verbal professor told me that facts just come to his mind instantly with no visual image. To retrieve facts, I have to read them off a visualized page of a book or "replay the video" of some previous event. This method of thinking is slower. It takes time to "play" the videotape in my imagination.


Research findings indicate that verbal thought and visual thinking work via different brain systems (Farah 1989; Zeki 1992). Studies of patients with brain damage indicate that one system can be damaged, while another system may be normal. The brain is designed with modular systems. These systems may work either together or separately to perform different tasks. For example, people with certain types of brain damage can recognize objects with straight edges, but they cannot recognize objects with irregular edges. The brain module that recognizes irregular shapes has been damaged (Weiss 1989). In Autism, the systems that process visual-spatial problems are intact. There is a possibility that these systems may be expanded to compensate for deficits in language. The nervous system has remarkable plasticity; one part can take over and compensate for deficits in language. The nervous system has remarkable plasticity; one part can take over and compensate for a damaged part (Huttenlocher 1984). A functional MRI study by Ring et al. (1999) indicates that people with Autism depend more on the visual parts of the brain on an embedded figures test.


Using Visualization

Visual thinking is a great asset in my career as a livestock equipment designer, and I have become internationally recognized in this field. Drafting elaborate drawings of steel and concrete livestock stockyards and equipment is easy. I can visualize a video of the finished equipment in my imagination. I can run test simulations in my imagination of how the systems would work with different size cattle.


Discussions with other autistic people have revealed visual methods of thinking on tasks that are often considered sequential and nonvisual. A brilliant autistic computer programmer told me that he visualized the entire program tree in his mind and then filled in the program code on each branch. A gifted autistic composer told me that he made "sound pictures". In all these cases, a hazy whole or gestalt is visualized, and the details are added in a non-sequential manner. When I design equipment, I often have a general outline of the system, and then each section of it becomes clear as I add details.


When I solve a scientific problem or review the scientific literature, I do it non- sequentially. The process is like trying to figure out what the picture on a jig saw puzzle is, when only some of the pieces are put together. A piece is put on one corner and then another corner and after about one fourth of the pieces are in place, a person can tell that the puzzle has a picture of a house on it.


As a child and as a young adult, I was good at building things, but it took time to learn how the symbolic lines on a set of engineering drawings related to the "video" of a house or a piece of equipment that was in my imagination. After I learned to read engineering drawings, I could then instantly translate the symbols on the drawings into a visualization of the finished structure. When I was 28, my drafting ability suddenly improved after I watched a skilled draftsman. I bought a pencil just like his, and then I copied his style, but the drawing I made was a new design. When the drawing was finished I could "play the video" and "test" the equipment to see if it would work. Visual thinking is not a fast method of thinking. It takes time to "play" the "video." I am unable to instantly access my memory. An accountant with Autism wrote to me and explained that he had to think slowly at his desk, but he could solve problems that were difficult for other accountants.


Visual thinking is also associated with being intellectually gifted. Albert Einstein was a visual thinker who failed his high school language requirement and relied on visual methods of study (Holton 1971-72). His theory of relativity was based on visual imagery of moving boxcars and riding on light beams. Einstein's family history includes a high incidence of Autism, dyslexia, food allergies, high intellectual aptitude, and musical talent, and he himself had many autistic traits - an astute reader can find evidence of them in Einstein and Einstein (1987). Other great scientists such as Leonardo de Vinci, Faraday and Maxwell were visual thinkers (West 1991).


Intellectual giftedness is common in the family histories of many persons with Autism. In my own family history, my great grandfather on my father's side was a pioneer who started the largest corporate wheat farm in the world. One sister is dyslexic and is brilliant in the art of decorating houses.


When I think about abstract concepts, such as relationships with people, I use visual images, such as a sliding glass door. Relationships must be approached gently because barging forward too quickly may shatter the door. Thinking about the door was not enough; I had to actually walk through it. When I was in high school and college, I had actual, physical doors that symbolized major changes in my life, such as graduations. At night, I climbed through a trap door on the roof of the dormitory to sit on the roof and think about life after college. The trap door symbolized graduation. The doors were a visual language for expressing ideas that are usually verbalized.


Park and Youderian (1974) also report use of visual symbols, such as doors, to describe abstract concepts. Visualization enabled me to understand the Lord's Prayer. "The power and the glory" were high-tension electric towers and a blazing rainbow sun. I visualize the word trespass as a "No Trespassing" sign on the neighbor's tree.


I no longer use sliding doors to understand personal relationships, but I still have to relate a particular relationship with something I have read or experienced. For example, a fight between my neighbors was like the United States and Europe fighting over customs duties. All my memories are visual images of specific events. New thoughts and equipment designs are combinations and rearrangements of things I have previously experienced. I have a need to see and operate all types of livestock equipment because that programs the "visual computer."


Park (1967) also explained that her daughter learned nouns first. Nouns are easy because they can be associated with pictures in one's mind. Inappropriate words are often used. For example, the name Dick was used to refer to painting. This happened because Park's daughter saw a picture of Dick painting furniture in a book. Park (1967) also describes why her daughter had problems with pronoun reversal and won't use the word I. She thinks her name is you because that's what people call her. Charlie Hart summed up autistic thinking with this statement about his autistic son Ted: "Ted's thought processes aren't logical, they are associational" (Hart 1989). The autistic person's visual thinking methods may explain some of the "Theory of Mind" problems that Frith (1989) outlines. Visual and associational thinking would explain Frith's observation that a child may say "French toast" when he or she is happy.


I still have difficulty with long strings of verbal information. If verbal directions contain more than three steps, I have to write them down. Many autistics have problems with remembering the sequence of a set of instructions. Children with Autism perform best with written instructions that they can refer to, compared to verbal instructions or a demonstration of a task, which require remembering a sequence of steps (Boucher and Lewis 1989).


Algebra is almost impossible, because I can't make a visual image, and I mix up steps in the sequence of doing a problem. I have many dyslexic traits, such as reversing numbers and mixing up similar sounding words such as over and other. Learning statistics was extremely difficult, because I am unable to hold one piece of information in my mind while I do the next step. I had to work with a tutor and write down the directions for doing each test. Every time I do a statistical test, I have to use notes. It is easy to understand the principles of statistics, because I can visualize the normal or skewed population distributions. The problem is, I cannot remember the sequence for doing the calculations.


Donna Williams (1992), an autistic woman from Australia, describes similar difficulties. She was unable to learn math until she watched the teacher write out each step. Like me, she had to see every step written on paper. If the smallest step is left out, the autistic mind will be stumped. The visual image of all the written steps is essential. Donna also became frustrated because her calculator did not have an "of" button for finding percents. Words that have no concrete visual meaning such as "put" or "on" need to be seen in written form in order to be heard and remembered (Park 1967). Written language is easier to understand than verbal language. Word processors should be introduced early to encourage writing. Typing is often easier than hand writing. Many autistics have motor control problems that result in messy illegible writing. Even highly verbal people with Autism can often express themselves better using the written or typed word. When I want to describe how I really feel about something, I can express myself better in writing.



I screamed because it was the only way I could communicate. When adults spoke directly to me, I could understand everything they said. When adults talked among themselves, it sounded like gibberish. I had the words I wanted to say in my mind, but I just could not get them out; it was like a big stutter. When my mother wanted me to do something, I often screamed. If something bothered me, I screamed. This was the only way I could express my displeasure. If I did not want to wear a hat, the only way I could communicate my desire not to wear the hat was to throw it on the floor and scream. Being unable to talk was utter frustration. I screamed every time my teacher pointed the pointer towards me. I was afraid because I had been taught at home never to point a sharp object at a person. I feared that the pointer would poke out my eye.


The speech therapist had to put me in a slight stress state so I could get the words out. She would gently hold me by the chin and make me look at her and then ask me to make certain sounds. She knew just how much to intrude. If she pushed too hard, I would have a tantrum; if she did not push enough, there was no progress. During recent visits to Autism programs, I have observed this technique being used in many different types of programs. When I started to speak, my words were stressed with an emphasis on vowel sounds. For example, "bah" for ball. My speech therapist stretched out the hard consonant sounds to help my brain to perceive them. She would hold up a cup and say “ccc u ppp.” Vowels are easier to hear than consonants. My speech and language problems were similar to the loss of speech that occurs in children who have had brain surgery to remove tumors in the cerebellum and cerebellar vermis (Rekate et al. 1985). The children lost speech and then regained their ability to speak a few stressed words at a time. The ability to understand speech remained normal. Courchesne et al. (1988) and Murakami et al. (1989) found that in moderate to high-functioning autistics, a high percentage had either an undersized cerebellum or abnormalities of the cerebellar vermis. In my own case, MRI brain scans revealed that my cerebellar hemispheres are smaller than normal.



What is the difference between PDD (Pervasive Developmental Disability), Autism, Asperger's Syndrome, etc.? It is doubtful that there are black and white boundaries between the different diagnostic categories. It is likely that there is a continuum where each diagnostic category merges into the next one in many varied shades of gray. Even though the different types of Autism are on a continuum the characteristics of the different types can be different. It is well known that different types of Autism respond differently to various drugs. From a treatment standpoint, they are apples and oranges, but from a neurological standpoint, the differences may be less distinct. The different subtypes of Autism may also differ from an emotional standpoint as well. As one moves from one end of the subtypes spectrum to the other, emotions may vary from a lack of affect to more normal emotions.


During talks with hundreds of parents and reading in scientific literature I have divided Autism diagnosis into two broad categories:

1) Kanner/Asperger Types (named after the doctors who discovered Autism) (Kanner 1943 and Asperger 1944) and

2) the Epileptic/Regressive Types. Fragile X syndrome, Retts Syndrome, known fetal damage and damage due to high fevers are not included.


Both types probably have a strong genetic basis. Talks with parents indicate that they both have the same family history profile (Grandin 1992a). An interview with Margaret Bauman indicated that both types have the same pattern of brain abnormalities (Bauman 1991, and Bauman and Kemper 1994). During her autopsy studies, she examined both types. Possibly the different clinical symptoms between the two types can be explained in subtle variations of brain abnormality within the larger framework of a basic abnormality in the limbic system, hippocampus, amygdala, and cerebellum.


Kanner/Asperger type

Asperger's Syndrome is probably a milder type of traditional Kanner type high- functioning Autism. People with Asperger's syndrome can often function better in the community and have more normal speech and thinking patterns. Research by Bowler (et al. 1992) at the University of London indicates that they can solve a simple "Theory of Mind" problem that traditional high-functioning autistics fail. An example of Theory of Mind problem is: "Peter thinks that Jane thinks etc." Both the Kanner and Asperger types have deficits in flexible problem solving, facial recognition, and fine motor speed coordination. Testing at the University of Denver by Ozonoff (et al. 1991) indicates that both types do poorly on the Wisconsin Card Sorting Test which is a test of flexible problem solving. Most people with Autism are visual thinkers, but there are some people with Asperger's syndrome who are good with numbers and have poor visual skills.


Kanner/Asperger types can range from individuals with rigid thinking patterns and a relatively calm temperament to people with more normal thinking patterns with lots of anxiety and sensory sensitivity problems. Many of the individuals have flat affect. Charlie Hart's (1989) excellent book, Without Reason, describes examples of the first type and my book, Thinking in Pictures(1995), and Annabelle Stehli's (1991) book, Sound of a Miracle, describes the second type.


Medications for Kanner/Asperger Types

At puberty, I had severe problems with anxiety, nervousness, and sensitivity to touch and sound. The anxiety felt like a constant state of stage fright for no reason. On the worst days I felt like I was being stalked by a gunman. Proper use of the right medication changed my life. My speech became more modulated, and I became more social when the anxiety eased. The individuals with anxiety and nervousness problems are likely to respond well to small doses of antidepressant drugs such as clomipramine (McDougal et al. 1992 and Gordon et al. 1993) and fluoxetine (Cook et al. 1992). Low doses of antidepressant drugs must be used to prevent problems with agitation and irritability.


Several papers I have read on the use of antidepressants in Autism have stated that the beneficial effect of the drug wore off in several weeks or months. When the dose was raised, there were problems with insomnia, restlessness, and agitation. These side effects are caused by an overdose of the antidepressant; and if they occur, the dose must be immediately lowered. I have been on the same low dose for twenty years. When I first stated taking antidepressants, the effect wore off in four months and the anxiety returned. I remained on the same dose and the drug started to work again several weeks later. If the effect of an antidepressant appears to wear off and anxiety or bad behaviors returns do not raise the dose. Remain on the same dose and the antidepressant will usually start working again after the relapse period passes. Find the lowest dose that works effectively and NEVER raise it. Fluoxetine is recommended if the EEG shows abnormalities because it is less likely to cause an epileptic seizure. Another advantage of fluoxetine is it has fewer uncomfortable side effects. Anecdotal reports from other adults with Autism indicate that fluoxetine improved their lives. Fluoxetine and other antidepressants should be used very sparingly in children.


The use of powerful medications in young children is a controversial area. Medications given when the brain is developing may possibly have a permanent effect on the development of neurotransmitter systems. Some medications may be very harmful, but there is also a possibility that some may be beneficial. One must always balance risk versus benefit. A good rule of thumb is that a medication should have an obvious, fairly dramatic effect. Research has shown that very young autistic children have abnormally low levels of serotonin in their brain compared to normal children (Chugani et al., 1999). Medications such as fluoxetine and other serotonin reuptake inhibitors will increase serotonin levels in the brain. Maybe this would be good for the young autistic brain. Rat research has now shown that fluoxetine may promote the development of serotonin circuits in the brain (Wegerer et al., 1999). At this time nobody knows if fluoxetine is good or bad for young autistic children.


Regressive/Epileptic Type

These individuals often have more obvious neurological problems, and their ability to understand speech is often poor. Even though they may pass a standard pure tone hearing test, they may not be able to hear complex speech sounds. Some of them cannot follow a simple command like "put the book on your head." Volkmar and Cohen (1989) were the first researchers to identify the regressive or "late onset" form of Autism. Many of these children have signs of subtle epileptic seizure activity, such as staring and "spacing out." Some of these individuals may have sensory jumbling and mixing; whereas Kanner/Asperger Types have good receptive speech and can understand what people are saying. Regressives may just hear a jumble of noise. Sands and Ratey (1986) describe this as the concept of noise. Allen and Rapin 1993) state that children with autistic behavior that are totally mute, with no receptive speech, have to be introduced to language through the visual modality. Some of these children may learn to speak when they are taught to read.


Many regressive/epileptic children are labeled low functioning and have low IQ scores. Some may be retarded, but others may receive a low-functioning label because their sensory processing problems make communication difficult. Conversations with many parents indicate that this group is most likely to have a favorable response to vitamins B6, magnesium, (Rimland 1988) or DMG supplements (Rimland 1990). Researchers in France have documented that B6 and magnesium supplements are effective (Martineau et al. 1985, 1986).


Anticonvulsants such as valproic acid or ethosuximide may be useful in improving speech and the ability to understand speech in three to five year old nonverbal autistic children (Plioplys 1994, Gillberg, 1991). Fankhauser et al. (1992) and Jaselskis et al. (1993). Both report that clonidine is beneficial for behavior problems. Recently there has been a concern about the safety of clonidine in children. Dr. Ed Cook reports that clonidine wears off in several months if it is given continually. He recommends using it only when needed to help a child or an adult sleep and not giving it during the day. One must always balance risk versus benefit. Both reports from parents and a report by Ricketts (1993) indicate that fluoxetine is useful for reducing self-injury. Serious behavior problems sometimes occur at puberty and autistic teenagers and adults may have severe rage or aggression. Beta blockers such as propranolol are effective for reducing severe aggression in adults (Ratey et al. 1987). Dr. Ratey has also found that risperidone will control aggression and rages which may not respond to other medications.


Dr. Joe Huggins has been working for years with teenagers and adults to find effective medication regimes for very severe aggression and rage. Dr. Huggins reports that risperidone must be give in very low doses to be most effective. This medication affects both the serotonin and dopamine systems in the brain. Very low doses, which may be as low as one quarter of the normal starting dose, are recommended. An extremely low dose will only affect the serotonin system, and it will stay out of the dopamine system. One bad side effect of risperidone, in some people with Autism, is high weight gain. Xyprexe (olanzapine) has worse weight gain.


An interview with Dr. Huggins indicated that he has three basic medications that he uses in low-functioning adults and teenagers who have difficulty managing aggression, rage or self-injury. They are risperidone, valproic acid and propranolol. He uses these three medications either singly or in various combinations. Dr. Huggins recommends very low doses of 0.5 to 1.5 mg of risperidone for controlling rage in autistic teenagers and adults. Risperidone is most effective for alpha type rage where the rage is directed at a specific person. The maximum dose of risperidone is 2 mg. to prevent it from getting into the dopamine system. Too high a dose is less effective for reducing anxiety. For beta type rage which is diffuse and not directed at a specific target, Dr. Huggins has had success with beta blockers such as propranolol. People that are hot and sweaty often respond well to propranolol. In non-verbal or poorly verbal people with Autism, Dr. Huggins avoids most of the SSRIs, such as Prozac (fluoxetine), due to problems with interactions with risperidol. Paroxetine (Paxil) and fluvoxamine (Luvox) interact badly with risperidone. Dr. Huggins prefers celexa (citalopram) if an SSRI has to be mixed with risperidone because it is the SSRI with the fewest problems with interaction.


If the aggressive outburst follows a cycle where they come and go, Dr. Huggins will often prescribe valproic acid. For the lower functioning people with Autism, his basic choices for medication for controlling severe behavior are: one low dose risperidone, valproic acid and propranolol. For high functioning teenagers and adults with Autism, one of the SSRIs, such as fluoxetine or one of the other SSRIs, is often the best medication to use where a single medication can be used to control both depression and anxiety. Many high functioning people are doing very well on a single SSRI such as Prozac (fluoxetine). Dr. Huggins has also reported that a combination of a reduced sugar diet and propranolol was more effective than propranolol alone.


Dr. Huggins publications can be ordered by calling 416-449-5511 or 416-445-3032 (also, His spiral bound booklet titled `Diagnostic and Treatment Model for Managing SIB, Rage and other Hyperadrenergic Behaviors in the Autistic, PDD, and DD Populations' can be obtained by contacting: Kerry's Place, 34 Berczy St., Suite 190, Aurora, Ontario, Canada, L4G 1W9; Fax: 905-841-1461.


Outbursts of aggression in autistic teenagers and adults are sometimes caused by frontal or temporal lobe seizures. These seizures (epileptic episodes) are often difficult to detect on an EEG (Gedye 1989, 1991). Seizures should be suspected if the rages occur totally at random. Most other types of aggression or rage are usually triggered by some event such as frustration with communication, painful sensory stimuli or an unexpected change in routine. If epilepsy is suspected, the teenager may respond positively to either carbamazepine, valproic acid or divalproex sodium (Gedye et al. 1989, 1991). Calcium supplements may help prevent severe self-abuse such as eye gouging (Coleman 1994).


When a medication is used, careful observations should be made to determine if it is really effective. As I stated before, one must balance the risk against the benefit. To avoid dangerous drug interactions consult, consult Graedon and Graedon (1995). Grapefruit juice should be avoided. It interacts badly with certain medications. One must ask the question: Does this medication provide sufficient benefit to make it worth the risk? In a nonverbal individual, a careful medical examination is recommended to look for hidden painful medical problems which could be causing either self-injury or aggression. Look for ear infections, tooth aches, digestive problems, headaches and sinus problems.



A teaching and therapy program that worked well for me may be painful and confusing to some nonverbal lower functioning, regressive/epileptic people with Autism. My speech therapist forced me to look at her. I needed to be jerked out of my autistic world and kept engaged. Some children with more severe sensory problems may withdraw further because the intrusion completely overloads their immature nervous system. They will often respond best to gentler teaching methods such as whispering softly to the child in a room free of florescent lights and visual distractions. Donna Williams (1994) explained that forced eye contact caused her brain to shut down. She states when people spoke to her, "their words become a mumble jumble, their voices a pattern of sounds" (Painter 1992). She can use only one sensory channel at a time. If Donna is listening to somebody talk, she is unable to perceive a cat jumping up on her lap. If she attends to the cat, then speech perception is blocked. She realized a black thing was on her lap, but she did not recognize it as a cat until she stopped listening to her friend talk.


She explained that if she listens to the intonation of speech, she can't hear the words. Only one aspect of incoming input can be attended to at a time. If she is distracted by the visual input of somebody looking in her face, she can't hear them. Other people with Autism have explained that they had a difficult time determining that speech was used for communication. Kins, a man with Autism, further explained that if somebody looked him in the eye, "My mind went blank and thoughts stop; it was like a twilight state." Cesaroni and Garber (1991) also describe confusing and mixing of sensory channels. Jim, a man with Autism, explained, "Sometimes the channels get confused, as when sounds came through as color." He also said that touching the lower part of his face caused a sound- like sensation. Donna told me that she sometimes has difficulty determining where her body boundary is.


Cesaroni and Garber (1991) also noted problems with locating a tactile stimulus. The tendency of some autistic people to constantly touch themselves and objects around them may be an attempt to stabilize body and environmental boundaries. Therese Joliffe, an autistic woman, explained that it was easier to learn by touch because touch was her most accurate sense (Joliffe et al. 1992). Donna told me that sensory integration treatment, consisting of rubbing her skin with brushes, has helped. Even though she disliked the tactile input from the brushes, she reported that it helped her different sensory systems to work together and become more integrated. Her sensory processing also becomes more normal when she is relaxed and is focusing on only one sensory channel. Donna may be half way along the continuum between the Kanner/Asperger Type and the Regressive Epileptic Type.


Patterns of Neurological Abnormalities

Both Kanner/Asperger Types and the Regressive/Epileptic Types have abnormalities of the cerebellum (Bauman 1991, Bauman and Kemper 1994). Cerebellar abnormalities may explain the sound and touch sensitivity problems observed in most forms of Autism. Research on rats indicates that the vermis of the cerebellum modulates sensory input (Crispino and Bullock 1984). Stimulation of the cerebellum with an electrode will make a cat hypersensitive to both sound and touch (Chambers 1947). The cerebellum may act as a volume control for hearing, vision, and touch. Courchesne et al. (1988) found that many high-functioning Kanner/Asperger autistic people have abnormalities of the cerebellar vermis. Kanner/Asperger Types may also have a smaller than normal cerebellum. MRI scans of my own brain indicated my cerebellum is 20 percent smaller than normal; and an autistic computer genius with ultra classical Kanner Type Autism has a cerebellum that is 30 percent smaller than normal.


As discussed previously, the more severely impaired Regressive/Epileptic Type autistic people have much greater sensory processing problems. Most Kanner/Asperger Types do not experience sensory jumbling, and they can attend to simultaneous visual and auditory input. In more severe cases, such as Williams (1993) and Cesaroni and Garber (1991), sensations from the eyes and ears can mix together. Individuals with Autism process information very slowly, and they must be given time to respond. Nonverbal adults will process sensory input more slowly than verbal adults. Some individuals with very severe sensory processing problems may take several hours to recover after experiencing sensory overload. Gillingham (1995) contains an excellent review of autistic sensory problems. Parents often ask, ‘how can I tell how severe my child’s sensory problems are?’


Children and adults that have tantrums every time they go in a large supermarket or shopping mall usually have severe sensory processing problems. Children and adults who enjoy shopping in big stores usually have less severe sensory problems. The degree of sensory processing problems will vary greatly from case to case. It can vary from mild sound sensitivity to sensory jumbling and mixing. Lewis (1993) describes her son who may be mid-way between Kanner Type and Regressive/Epileptic Type. He does not have the rigid thinking of a typical Kanner Type, and he understands the give and take of conversations. However, he has signs of serious sensory processing problems, because he does self-stimulatory behaviors in nearly every sensory modality. Possibly, this may be due to brain stem abnormalities in addition to the cerebellar abnormalities. Hashimoto et al. (1992) found that low-functioning autistic people with low IQ scores had smaller brain stems. McClelland et al. (1992) also found that low-functioning individuals were more likely to have abnormal results on a central conduction time test, which is a measure of brain stem function.


McClelland et al. (1992) believe that autistic people have a defect in myelinization. This would account for the frequent occurrence of epilepsy and abnormal brain stem- evoked potentials in older autistic children. Myelin forms the fatty sheaths around neurons. It is like insulation on electrical wires. The lack of myelinization may also account for the mixing of sensory input from the eyes and ears and mind blank outs that occur when an autistic person becomes excited. The "space out" and jumbling may be due to miniature epileptic seizures that occur between the poorly myelinated neurons. Jim, one of the autistic people that Cesaroni and Garber (1991) interviewed, theorizes that certain frightening sounds can act as a trigger for disorganization of processing, similar to epileptic seizures that a flashing light can trigger.



Autism is a neurological disorder that is not a result of psychological factors. A complex inheritance of many interacting genetic factors cause most cases of Autism. There is a continuum from normal to abnormal. Autistic traits often show up in a mild degree in the parents, siblings, and close relatives of an autistic child (Narayan et al. 1990; Landa et al. 1992). Some of the traits that seemed to be associated with Autism are: intellectual prowess, shyness, learning disabilities, depression, anxiety, panic attacks, Tourette syndrome (tic disorder), and alcoholism (Narayan et al. 1990; Sverd 1991). There is a high correlation between Asperger's syndrome and manic depression (Delong and Dyer 1988). Possibly a small amount of these genetic traits confers an advantage, such as high intelligence or creativity; too many of the traits will cause problems (Clark 1993) Other causes of Autism are the Fragile X gene, insults to the fetus, such as Rubella or other viruses, and high fevers at a young age.


Brain autopsy research (Bauman 1991, Bauman and Kemper 1994) and MRI studies (Courchesne et al. 1988; Hashimoto et al. 1992) indicate that people with Autism have structural abnormalities in the brain. Certain areas of the brain, such as the limbic system and cerebellum are immature. Other studies have shown that lower functioning people with Autism also have abnormally slow transmission of nerve impulses through the brain stem (McClelland et al. 1993) and immature EEG patterns (Cantor et al. 1986). Dr. Patricia Rodier (2000) explains that the brain abnormalities that cause Autism occur very early in the developing embryo. Her research has shown that there are defects in the developing brain stem that happened near the end of the first month of pregnancy. A structure called ‘the superior olive’ is missing in the brain stem. This may explain the lack of cerebellum development in Autism. In summary, Autism is a disorder in which some parts of the brain are underdeveloped and other parts may be overdeveloped. This may be a possible explanation for why some autistic people have enhanced visual and savant skills.



Teachers, therapists and other professionals who work with autistic people need to recognize and treat sensory processing problems in Autism. Treatment programs that are appropriate and beneficial for one type of Autism may be painful for other types. At ages two to four, many autistic children will probably respond well to gently intrusive programs where the child is required to maintain eye contact with the teacher. Lovaas (1987) has documented that roughly half of young children will improve sufficiently so they can be enrolled in a normal first grade at age six or seven.


It is likely that the children who did not improve in the Lovaas program were experiencing sensory overload. They may respond better to a gentler approach using only one sensory channel at a time. As children get older they tend to separate into two groups. Children like me who can be "jerked" out of the autistic world and asked to pay attention, and individuals like Donna Williams and Therese Joliffe who require a gentler approach. The prognosis of both types of children will be improved if they receive a minimum of 20 hours a week of good educational programming between the ages of two and five. Both types of young autistic children MUST be prevented from shutting out the world. They have to be kept engaged so that their brains can develop more normally. For one type of child the teacher can "jerk open the front door;" and for the other type, the teacher must "sneak quietly through the back door."


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