edited by Emanuela Sedran

I am a 55 year old autistic woman who has a successful international career designing livestock equipment. I completed my Ph.D. in Animal Science at the University of Illinois in Urbana and I am now an Assistant Professor of Animal Science at Colorado State University.

When did you receive the diagnosis of being an autist and who gave it to you?
I received the diagnosis of autism for the first time when I was about 4 years old but the thing that I can remember is when I was 15 years old because I had not the focus on what autism was when I was a little kid (my original diagnosis was brain damage because the doctors hadn’t heard about autism yet).
The doctor gave us the diagnosis but it was my family and teachers, and people later on who had told me I had Autism. Although I was diagnosed at the age of four, when I was a kid I wasn’t aware I had Autism. I knew I had problems with learning to talk. I certainly was conscious of that and not being able to speak was utter frustration. If adults spoke directly to me I could understand everything they said, but I could not get my words out. It was like a big stutter. If I was placed in a slight stress situation, words would sometimes overcome the barrier and come out. My speech therapist knew how to intrude into my world.
She would hold me by my chin and made me look in her eyes and say “ball”. If the therapist pushed too hard I threw a tantrum, and if she did not intrude far enough no progress was made. My mother and teachers wondered why I screamed. Screaming was the only way I could communicate.
Often I would logically think to myself, “I am going to scream now because I want to tell somebody I don’t want to do something”. I also didn’t realize that the way I thought was different: I think in pictures and I thought everybody thought completely in pictures until I questioned many different people about their thinking processes. I asked people to think about something like church steeples. What people generally think and see, is like a sort of generalized generic church image while, when I do this, I see in my imagination a series of “videos” of different churches I have seen. I see a whole series of specific church steeples. My “church steeple” concept consists of a series of “videos” of churches I have seen. There is no generalized church. If I keep thinking about 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. I didn’t realize why I was different, why I was not social. I only understood that after I read many papers about autism.

When were you really aware of your pathology?

I became aware of my having autism only when I was in high school. At that time my parents told me that I had the diagnosis of autism. How important was it for you to know that you are suffering from autism? One thing I want to say is: I think it is very important for the kids to be informed. Which is the best age to tackle this problem? In all the United States the children with autism are explained what autism is when they are 7 or 8 years old and when the child is older, and reach a good read level, I recommend books like my “Thinking in pictures”1 . All people with autism have told me that it was very valuable for them to read some of the books with personal accounts of other people with autism, as it may be valuable to read some medical books. I also met many parents and people with autism and heard them saying that what was valuable for them is to explain how people with autism think. As I said, usually the best time to tell a child is around seven or eight years old when the child reactions are going to be odd because it’s when they become social. Seven or eight year old is the age they are told about in the US and you have excellent children books designed specifically to educate autistic children and also educating brothers and sisters about autism. Obviously the books are designed for high functioning and Asperger people that are capable of reading at a seven or eight years old normal reading level.

Do you think that to be aware of being an autist influences on the quality of life of people suffering from autism and of their relatives?

I think the knowledge of having autism is very helpful as, for example, it helped me to understand so much social problems. Another thing you need to understand about a person with autism is: “I am what I think rather than what I feel” and this is one of the reason why it is so important to have this knowledge. So, knowing the diagnosis is very important because people need to understand that the way they think and feel is different and I strongly recommend that they read reports and some of the other personal accounts so they then get the understanding and insight in the other difference of people with autism and they may better learn how people think. So it is extremely important especially for High Functioning people with autism and Asperger to read books with personal accounts and medical issues explaining what autism is because that help them understand why they are in the way they are.

What kind of problems and difficulties have to face the people suffering from autism in their daily life?

For example, one of the major problems in autism are sensory problems. Would you tell us your experience about it? Sensory Problems are: overly sensitive skin and tactile problems, auditory, visual problems.

Does it take then a different time to each one to adjust himself?

They are very variable from kid to kid. For example, washing my hair and dressing to go to church were two things I hated as a child. A lot of kids hate Sunday clothes and taking baths. But shampooing actually hurt my scalp. It was as if the finger rubbing my head had sewing thimbles on them. Scratchy petticoats were like sandpaper scraping away at raw nerve endings. In fact, I couldn’t tolerate changes in clothing altogether. When I got accustomed to pants, I could not bear the feeling of bare legs when I wore a skirt. After I became accustomed to wearing shorts in the summer, I couldn’t tolerate long pants. Most people adapt in several minutes, but It still takes me at least two weeks to adapt. New underwear is a scratchy horror. I wear my bras until they are falling apart, and new ones require no fewer than ten washings to make them comfortable. Even today I prefer to wear them inside out, because the stitching often feels like pins pricking my skin.

Parents can avoid many problems with sensory-induced tantrums sim You had problems also with your hearing, didn’t you?

Again, when I was little, loud noises were also a problem, often feeling like a dentist’s drill hitting a nerve. They actually caused pain. I was scared to death of balloons popping, because the sound was like an explosion in my ear. Minor noises that most people can tune out drove me to distraction. When I was in college, my roommate’s hairdryer sounded like a jet plane taking off. Some of the sounds that are most disturbing to autistic children are the high-pitched, shrill noises made by electrical drills, blenders, saws, and vacuum cleaners. Echoes in school gymnasiums and bathrooms are difficult for people with autism to tolerate. The kinds of sounds that are disturbing vary from person to person. A sound that caused me pain may be pleasurable to another child. One autistic child may love vacuum cleaner, and another will fear it. Some are attracted to the sound of flushing, splashing water and will spend hours flushing the toilet, while others may wet their pants in panic because the flushing sounds like the roar of Niagara Falls. And concerning the sense of sight of the autists, what can you tell us about your experience? Some people have also visual processing problems. For example, fluorescent lighting causes severe problems for many autistic people, because they can see a sixty cycle flicker. Household electricity turns on and off sixty times each second, and some autistic people see this. Problems with flickering can range from excessive eyestrain to seeing a room pulsate on and off. Distorted visual images may possibly explain why some children with autism favor peripheral vision. They may receive more reliable information when they look out of the corners of their eyes. One autistic person reported that he saw better from the side and that he didn’t see things if he looked straight at them. Sensory problems in autism are often overlooked by scientist and educators, because they think the main improvement in autism is the social and emotional ability.

Certainly the social and emotional problems are grave for the autists, don’t you think so?

Of course social problems and emotions are severe in autism. As a child, I found picking up social cues impossible. When my parents were thinking about getting divorced, my sister felt tension; but I felt nothing because the signs were subtle. My parents never had big fights in front of us. The signs of emotional friction were stressful to my sister, but I didn’t even see them. Since my parents were not showing obvious, overt anger toward each other; I just did not comprehend the tension. Which are the decesive factors that make difficult to manage the social relationship of an autist? Social interaction is further complicated by the physiological problems of attention shifting. Since people with autism require much more time than others to shift their attention between auditory and visual stimuli, they find it more difficult to follow rapidly changing, complex social interactions. These problems may be part of the reason why Jack, a man with autism, said, “If I relate to people too much, I become nervous and uncomfortable.” Learning social skills can be greatly helped with videotapes. I gradually learned to improve my public speaking by watching tapes and by becoming aware of easily quantifiable cues, such as rustling papers that indicate boredom. It is a slow process of continuous improvement. There are no sudden breakthroughs. Figuring out how to interact socially was much more difficult than solving an engineering problem. I found it relatively easy to program my visual memory with the knowledge of cattle-dipping vats or corral designs. Recently, I attended a lecture where a social scientist said that humans do not think like computers. That night at a dinner party I told this scientist and her friends that my thought patterns resemble computing and that I am able to explain my thought processes step by step.

Are informations and emotions managed in different ways concerning the cognitive-behaviour of an autist?

I was kind of shocked when she told me that she is unable to describe how her thoughts and emotions are joined. She said that when she thinks about something, the factual information and the emotions are combined into a seamless whole. I finally understood why so many people allow emotions to distort the facts. My mind can always separate the two. Even when I am very upset, I keep reviewing the facts over and over until I can come to a logical conclusion. Social relationships have been learned solely by intellect and use of my visualization skills. All my thoughts are in pictures, like videotapes in my imagination. When I encounter a new social situation I can scan my data banks for a similar situation that I can use as a model to guide me in the new situation. My data banks in social skills are also filled with news articles about diplomatic relationships between different countries and an archive of previous experiences. I use these scenarios to guide me in different situations. I then run videotapes in my imagination of all the possible ways to predict how the other person might act. It is all done using my visual mind. I have great difficulty with new social situations if I cannot recall a similar situation to use as a guide.

Regarding the learning, which kind of difficulties did you find in your way to the awareness of your inner life?

It is easy for me to pass a simple ‘theory of mind’ test because I visualize what the other person would be seeing. For example, if John sees Sally put a candy in a jar and then Sally eats the candy when John leaves the room and replaces it with a pen, I know that John expects to find a candy because he did not see the candy replaced by the pen2 . I have difficulty with more complex ‘theory of mind’ problems which involve two or three people doing several different things. I do not have sufficient short-term memory to remember the sequence of events. My problem is due to a poor short-term working memory. Difficulties with short-term working memory should not be confused with a lack of understanding of ‘theory of mind.’ I can solve more complex ‘theory of mind’ tests if I am allowed to write down the sequence of events.

What kind of strategies did you used in the society to overcome the difficulties of an autist?

Over time, I have built up a tremendous library of memories of my past experiences, TV, movies, and newspapers to spare me the social embarrassments caused by my autism; and. I use these to guide the decision process in a totally logical way. I have learned from experience that certain behaviors make people mad. Earlier in my life, my logical decisions were often wrong because they were based on insufficient data. Today they are much better, because my memory contains more information. Using my visualization ability, I observe myself from a distance. I call this my little scientist in the corner, as if I’m a little bird watching my own behavior from up high. This idea has also been reported by other people with autism. Dr. Asperger noted that autistic children observe themselves constantly. They see themselves as an object of interest. For most people social interactions and emotions are the most important thing in their life. I have emotions but they are more like child emotions and only when I was working on my book, Thinking in Pictures, I realized I’m missing emotional complexity in my life, but I have replaced it with intellectual complexity. I obtain great satisfaction out of using my intellect. I like to figure things out and solve problems. This really turns me on. When I observe emotional complexity in others, it is sort of a rhythm that goes on between a boyfriend and a girlfriend. I often observe this on airplanes. Sometimes I get to sit next to them. It is similar to observing beings from another planet. The relationship is what motivates them; but for me, it is figuring out how to design something, such as figuring out better ways to treat autism.

Where did you find the energy and motivations to carry on during all this years?

I use my mind to solve problems and invent things. I get a tremendous satisfaction from inventing things and doing innovative research. My life is basically my work. If I did not have my work, I would not have any life. This brings up the importance of getting autistic people in high school and junior high school interested in something they can turn into a career. They need to build on their talents, such as art work and computer programming. Autistics also need mentors to explain the ways of the world and to help in selling themselves to get a job. Infact, getting and maintaining a job is one of the most difficult steps in the life of a person with autism and often during interviews, people are turned off by our direct manner, odd speech patterns and funny mannerisms.
While I was working at Corral Industries I would visit the Swift meat-packing plant once a week. A year later, I sold Swift the contract to build a new cattle ramp for Corral Industries. During construction of this project, I learned that being technically right was not always socially right. I criticized some sloppy welding in a very tactless way, and the workers got angry. Harley Winkelman, the plant engineer, gave me some good advice. He told me: “You must apologize to the workers before a small problem turns into a big cancer”. He made me go to the cafeteria and apologize, and he helped me learn to criticize more tactfully. I quit the job at Corral Industries and continued to write for the Arizona Farmer Ranchman while I started my design business on a free-lance basis.
Free-lancing enabled me to avoid many of the social problems that can occur at a regular job. It meant I could go in, design a project and leave before I got into social difficulties. I still don’t easily recognize subtle social cues for trouble, though I can tell a mile away if an animal is in trouble. However, I would never stress enough how important it is that High Functioning and Asperger people develop their talents. There should be places for these guys to work, making shoes or painting for example: they need to be developed, they need to go to University. It is important to allow this people to get a job and, if there may be difficulties at a regular job, you can avoid sensory problems being a free lance and working at home. But, I think also it’s important to let all children with autism develop their talents from the beginning.

From your experience, what kind of therapeutic approach should be applied to autistic children?

One of the most important things is, in my opinion, that a child gets a treatment, especially when the child is 2 or 3-4 years old. Do not wait. The worst thing you can do to an autistic child is let him watch TV all day, that’s the worst. Two - three or four year old autistic children need many, many hours of active interaction with the teacher, a lot of teaching of language, playing games and it’s very good to do a lot of turn taking games with them. You’ve got to work with these kids and if you do this early education, you strictly improve the child.

What do you think about the present therapies to help autistic children?

Many people in the States are doing the behavioural program, Lovaas’ ABA. However, in my opinion the important thing is a lot of interaction with the teacher. We have got to teach autistic children to actify and to interact, we can’t let them sit at a corner all day. You can do a lot of behavioural things, but children with autism need to learn how to take turns and for this reason, as I said before, a good thing to do is lot of turn taking games. They also need to learn how to ask questions and this is very important for their life. To have success in this early education, I think the most important thing is the teacher herself, that is the most important thing. Some teacher know how to work with these children and other teacher do not know. So, one of the thing you have to be concerned about is who the teacher is. The teacher needs to be very active and engaged with the child and the child needs about 40 hours a week where is actively engaged with the teacher. You also need to have play sections with other children and one of the good things to do is turn taking games where you get the autistic child with the normal children to play games where you have to take turns (games like throw dice, count, write the number and then take turns).
Those things are very good. I think that it is very important to stress that the two and three year old and four year old autistic child need many hours a week actively interacting with the teacher, learning language, learning how to take turns, and the worse thing you can do a young autistic child would be let him to sit in the corner doing a lot of repetitive behaviours or watching TV all day or videogames all day. Videogames should never been available: they’re terrible for small autistic children. In 2, 3 and 4 year old children I say “no videogames” when what they need is many people interacting with them. But this kind of early education may cost a lot. So, what I recommend to the parents who have low income is to go to a church group and ask for volunteers watching their child and working with the kid as some of these church volunteers can be very affective, positively engaged.
They can read my book “Thinking in pictures” or some other books such as Lovaas’ and learn things about autism and how to deal with people with autism. However, the most important thing is doing a lot of work on a very young child. Church volunteers can be very good teachers. The ladies of the church group can be good, and get a volunteer to come in is very important for parents because they need help or they just go crazy.
There are a lot of treatments that parents try, hoping to get in contact with their autistic child. Many people follow the wind and then you see all their hopes vanish. The most important thing is that the child has an early intervention and he or she must be actively engaged with an adult.
In Italy, I know, now it seems up-to-date to follow the Facilitated Communication which was up-to-date in the States at the beginning of the nineties. With Facilitated Communication the fact is that in many instances the teacher is pushing the child on. If you want to try with Facilitated Communication you need to teach the child from the beginning that he is going to do this “work” with at least 3 different people and you need to start doing it with 3 different people right at the beginning. This can solve the problem of whether there is an hand pushing or whether the child wrote it by himself. Now on non verbal children, when Facilitated Communication does work, usually you just get simple one and two words answers, you don’t get perfect, beautiful, romantic correct Italian. The child can learn to type independently and the child has to be encouraged to type independently. Other issues that are very popular nowadays are diets and vaccines. What is your opinion on diets and vaccines? I think that for some children some of the diets work, like the casein and gluten free diets, but that works for some children and not for all of them. I also think that for some children, where there is a family history of autism, or dyslexia or severe learning problems, like a baby of a mother who had learning problems or whose brother has learning problems, delaying some of the vaccination in the time is a good idea. You still vaccinate the child, but later when the child is 3 or 4 years old. I want to emphasize that it is important to vaccinate. What we can do, however, is delay for example the MMR where there are three diseases in one vaccination.
Well, you can get that vaccine in separate doses and spread it out and do it when the child is a little older. You do the mumps shot and then you go back later and you do measles shot and, finally, the rubella shot and so you just split them up. I think this is a reasonable thing to do especially where a family already has one autistic child and then have they’re second child: in this case, I would definitely delay the vaccine on that child so you can avoid the risk. There are also many people who use homeopathy. I think that some of the homeopathic medications may be helpful but I don’t want to have Homeopathy replace early intense education and the number one thing I would do with a 2 or 3 year old child is 40 hours a week with people working with him/her all the time. Another thing I recommend: be careful with homeopathic stuff! You need to watch drug interactions, you need to check because also allergy medications interact with homeopathic drugs. So, for example, if you are an adult and you are taking Prozac and also allergy medications you must be very careful and check if these drugs have dangerous interactions with the homeopathic ones. There are also some other drugs or medications that seem to be effective for some people with autism.
For example, there’s a type of autism where the child appears to be normal at the beginning: he has a few words and the behaviour is normal. Then, at the age of two, he loses his normal behaviour and his normal speech. Some of these children will respond to epilepsy drugs. What happens to the children described above, is that they have tiny epileptic fits, tiny mini-seizures which are difficult to discover with an EEG. What I suggest is to try a couple of months with the drug and, if it is still worth trying, go ahead even if the EEG show no evidence. If there are no positive effects, just stop the drug. Also some High Functioning people like myself, when they get to teen-age they need to take medications. I think Prozac is very useful but you have to be careful with the doses. A big mistake the doctors make is they give too high doses of Prozac to autistic people. Low functional adults may take Risperdal in a low dose, epilepsy drugs and beta blockers.
Dr. Joe Huggins3 in Canada did research on how to use these medications on low functioning adults. Dr. Joe Huggins has been working for years with teenagers and adults to find effective medication regimes for very severe aggression and rage. He reports that risperidone must be given 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. In any case, Risperdal should not be given to a two or three year old child. 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 propranololo. He uses these three medications either singly or in various combinations.
He recommends very low doses of 0.5 to 1.5 mg of risperidone for controlling rage in autistic teenagers and adults. The bigger mistake doctors make with people with autism is to give them too high doses of drugs. However, I think that if the proper use of medication is part of a good autism program, it is not a substitute for the proper educational or social programs. Medications can reduce anxiety but it will not inspire a person the way a good teacher can."

Emanuela Sedran

1 (NdC) Grandin T., Thinking in pictures and other reports from my life with autism, Vintage books, A Division of Random House, Inc., New York, 1995. Grandin T., Pensare in immagini e alter testimonianze della mia vita di autistica, Erickson, Trento, 2001.

2 (NdC) T. Grandin refers to the famous experiments of Uta Frith and S. Baron Cohen, reported in Frith U., Autism. Explaining the enigma, Blackwell, Oxford UK & Cambridge, USA, 1988.

3 Huggins, J. 1995. Diagnostic and treatment model for magaing SIB, rage and other hyperadrenergic behaviors in autistic/PDD and DD populations. Published by Kerry’s Place, 34 Berczy St., Suite 190, Aurora, Ontario, Canada, L4G 1W9. Telephone: 905- 841-6611 (Medication regimes for teenagers and adults).

4 Huggins, J. 1995. Modello diagnostico e terapeutico per gestire SIB (comportamenti autolesivi), rabbia e altri comportamenti iperadrenergici nella popolazione autistica PDD (Pervasive Developmental Disorders) e DD (Developmental Disabilities). Edito da Kerry’s Place, 34 Berczy St., Suite 190, Aurora, Ontario, Canada, L4G 1W9. Telefono: 905- 841-6611 (Regimi farmacologici per adolescenti e adulti).