Autism Consulting Service   

Gail Gillingham Wylie, MSc

Autism Consulting Service

Edmonton, Alberta, Canada

 When one is teaching a child with autism, one must take many different factors into consideration. Although it may seem like one is forced to walk a tightrope at times, once you get into it, it’s not quite as difficult as it may seem. Teachers who have chosen to put these practices into place have found that their lives have been made so much easier and rewarding because they are now able to concentrate on the individual child and his/her abilities rather than the frustration of dealing with major meltdowns on a daily basis. Note: although I am directing this advice to teachers, it can be used by anyone who works with those with autism whether you are a parent, a therapist, or whatever.

 

Understanding autism means that you recognize

 

1. Children with autism are not mentally retarded, no matter what statistics may claim (as in the DSM-IV), or what testing may indicate. There are no intelligence tests at this time which take into account the problems of children with autism and have been normed for this population. Thus any test (or score) used to date must be treated with suspicion.. One must fully believe that a lack of verbal communication, an impairment in social relatedness and the use of bizarre and unacceptable behaviors have nothing to do with the intellect of the child.

 

                  “All my life I was enrolled in classes for the profoundly retarded. The pain of the isolation, I can’t describe. Some classes consisted of putting flashlights together and then they would be taken apart for the next days project. I never spoke or made eye contact. I hummed and self stimmed. No wonder they thought I was hopeless. I was always treated well, but my intellectual needs were never addressed because nobody knew I had any intellect at all. Sad to say, many like me, remain in that same hellish situation.^[i]”

 

2. High levels of sensitivity and arousal in people with autism lead directly to increased levels of anxiety when compared to typical students. Anxiety occurs in 5 stages: no anxiety, buildup, survival mode, shutdown and meltdown. Autistic people rarely experience the state of no anxiety. However while in this state they are able to do as much, and often even more, as regular people. It’s the only time you see them at their full potential.

 

During the stage of build-up, the anxiety level increases as the autistic person deals with stimulation experienced from within, from the environment and through boredom. In order to cope with the increased level of anxiety, autistic people reach the stage of survival mode, in which they engage in coping mechanisms to decrease the level of anxiety, or to shut themselves down to eliminate their responses to stimulation. They do this through the use of withdrawal from the sensory input, repetitive and stereotypic behaviours, direct over stimulation of their sensory system, escape into fantasy, and/or through focusing all their attention on one task or subject. These behaviours provide the protection they need, but their coping mechanisms are often defined by outsiders as undesirable and inappropriate and much of our time is wasted trying to eliminate them without any understanding of how important they are. The level of anxiety that a person is experiencing can be monitored by watching the use and rate of the repetitive and stereotypic behaviours as well as a decrease in the ability to communicate and interact socially. The extreme state in survival mode is shutdown, in which the person is not taking in any sensory information, or feeling any physical responses. It is the result of the use of over stimulation to the sensory system ( for example: staring into a bright light or at a moving object, turning the volume up high or screaming loudly,  drinking Tabasco sauce, smearing one’s faeces, head banging, biting oneself and so on.)

 

 “Calmness or pleasantness is when I feel nothing except numbness and peacefulness. I like that feeling very much. It’s like a sleepy feeling, I think. I try to keep numb and calm. I function best when I am this way. It may sound terrible but, trust me, it’s good for me.”^[ii]

 

This is often a dangerous state as the individuals are totally oblivious to what is going on in the world around them. Any educational input at this time is wasted as it does not go in. They may also be in danger because they do not register sensory input. They may walk in front of moving traffic without seeing or hearing it, and do not feel pain or hunger. Toilet training is directly linked to the need for protection and the use of behaviours, which block out stimulation. When one is blocked out, one cannot feel the need to go to the bathroom. Once they are safe and secure and have no need for the blocking behaviours, they will learn to toilet on their own.

 

The final anxiety state is meltdown which occurs when the person has experienced too much input at once; without the time to use coping mechanisms to protect themselves; when the level of input is so high that the coping skills are not able to cope with the amount of input, or when the individuals are placed in a situation in which they are not allowed to use their coping skills to protect themselves. Meltdown is the total loss of control of ones body. They are actually panic anxiety attacks. Aggression to others may occur when the autistic person is experiencing meltdown.

 

“A feeling kept washing over me. It began with the feeling one gets from eating lemons. It was like a tingle that ran up my neck and then spreads out into every thread and fibber of my body like the emergence of cracks in an earthquake. I knew the monster. It was the Big Black Nothingness and it felt like death coming to get me.

 

The walls went up and my ears hurt. I had to get out - out of the room, out of this thing struck upon me, suffocating me inside a shell of flesh. A scream rose in my throat. My four-year-old legs ran from one side of the room to the other, moving ever and ever faster, my body hitting the wall like a sparrow flying at a window. My body was shaking. Here it is. Death was here. Don’t want to die, don’t want to die, don’t want to die, don’t want to die - the repetition of the words blended into a pattern with only one word still standing out: the word ‘die’. My knees went to the floor. My hands ran down the mirror. My eyes frantically searched the eyes looking back, looking for some meaning, for something to connect. No one, nothing, nowhere. Silent screaming rose in my throat. My head seemed to explode. My chest heaved with each final breath at the gates of death. Dizziness and exhaustion began to take over the terror. It was amazing how many times a day I could be dying and still be alive.”^[iii]

 

Trying to teach an individual anything during meltdown is a waste of time. Step back and let them regain control of their own body in an environment with as low a level of sensory input as possible. Your input at this time will only make things work until they have regained control of their bodies. Leading the student in deep breathing exercises once they have some control will decrease the anxiety level of both of you.

 

Withdrawal, agitation and the use of repetitive and stereotypic behaviours indicate that the individual is not safe in the present

environment. Various stereotypies are connected to various senses that need protection at that time. Examples that indicate problem with a specific sense include:

Visual: Staring directly at bright lights, repetitive blinking or squinting, using peripheral vision, moving  fingers or hand flapping in front of the eyes, turning lights on and off, looking at spinning objects or being constantly on the run. Reading difficulties usually have more to do with vision or the communication impairment than inability to read or to comprehend.

Auditory: hand flapping at the sides of the head, using consistent repetitive noises  such as tapping objects, or ripping paper, etc., making vocal sounds, echolalia.

Tactile: adverse reactions to human touch, hugs, kisses, standing in line, etc. walking on tiptoes, inability to sit in one spot for long period of time, inability to write, do up zippers, and other tasks that use the tips of the fingers, self injurious behaviour such as biting, pinching or head banging.

Smell: smelling objects or people, breathing through the mouth, flapping or waving hand in front of the nose, stopping up the nose with the fingers, smearing faeces.

Taste: refusal to eat certain foods, placing objects in one’s mouth.   

 

3. Not only are these children not mentally retarded, they have extremely busy minds which must be kept active at all times. Many of the repetitive behaviors we have to deal with are linked directly to boredom which leads directly  back to the choices of activities that we have made for them.

 

                  “I wanted to live up to the potential of my brain, but I was confined to this body that seemed to have its circuits crossed or shorted out. I attended special education classes that were conducted on a pre school level. That meant that I had to do boring tasks such as stringing large wooden beads and placing pegs in a peg board.

 

          " To fight boredom I resorted to my dream-talk conversation. Sometimes I just sat by myself and rocked back and forth. or I stared at my fingers: I found that it helped me to turn off my busy mind so I would not have to think of how bored I was. At other times I would spit on my finger and hold it up to the window because by doing that, I could see all sorts of pretty colours as sunlight shone through the spit. I’m sure everybody thought I was behaving like a mindless idiot, but to me it was a form of amusement.^[iv]”

 

4. Due to the need for protection, children with autism will rarely initiate their own educational processes. Teachers have to break through the wall of withdrawal and protection in order to teach them the many things that they have to learn throughout their lifetime. The sooner we do this, the better. The safer the environment, the easier it is to accomplish.

 

5. Do not assume that children with autism who appear inattentive, are not paying attention. For some it is often more effective for them to have information coming in from one sense at a time. Thus they will often close their eyes, or cover up their heads in order to concentrate on your verbal message. They also may be able to concentrate better by looking away from you when you are speaking to them or moving away from you. Other  children need action to concentrate so can listen more effectively when they are moving around the room instead or sitting still, being allowed to draw or doodle, or holding on to or playing with an object.

 

6. Although it may seem very hopeless at times, children with autism are always learning and do retain the knowledge that you pass on to them.

               “In the midst of all the chaos and confusion the learning was going on, However it was dormant until it was needed. I felt like two people: the normal person trapped inside the autistic person. When the autistic veneer began to crumble the information was there, ready to be used.^[v]”

 

 However, the lives of many have been wasted because no one ever took the time to provide an actual education to them due to belief that it would be a waste of time. It is far better to err on the other side.

 

 So how do you put all this into practice?

 

1. Create a safe environment, taking all of the suggestions in Autism Handle with Care into consideration, working directly with the individual needs of the specific child. The level of sensitivity of the child will indicate just how extreme you have to go to provide this safe environment. For many it will be only having a teacher or teacher’s  aide working directly with the child in the midst of an ordinary classroom. For the most extreme cases it means working one on one in an empty room with sound absorbent walls and only the current task in view at one time.

 

2. Change your behavior to make the learning experience safe for the child, Lower your voice, don’t wear perfume, find other ways to praise instead of hugs or clapping, don’t touch them all the time and so on.

 

3. If you are just beginning to work with a young child, move slowly, giving them the time to totally explore the environment, and get to know you. Never insist on eye contact. Stand or sit beside them, instead of in front or behind them so they don’t feel threatened by you. Allow them the chance to lead. Give them the opportunity to get to know the space on their own before the other students arrive.

 

4. Institute an educational program that focuses on

•  real educational material, not the removal of the protective behaviours. How do we measure if it is educational or not? Is it something that we use as an education for normal children at the child’s peer level?

• moves at a very fast pace. Don’t cover the same material over and over again. Once they have shown they know it, move on. They should not have to repeat something 100 times in order to prove they can do it. Repetition leads to boredom which leads to a refusal to perform

• uses all types of learning. This does not just mean pec symbols and schedules so don’t get stuck there. Visual learning can be anything from using a hula hoop to represent a person’s need for “personal body space” (have the children hold a hoop around them as they walk to see how much space is represented), to dissecting a frog, to cutting an apple into quarters, or visiting a fire station in person. It’s all visual.          

                  “The only thing I remember from math class was a hands-on demonstration on the meaning of “pi” - the formula for finding the area of a circle. I remember that the teacher took a cardboard circle and wrapped a string around the circumference and showed the class that it equalled three diameters with a little left over that worked out to 3.14. This was real to me. I saw it and understood it.^[vi]”

• Kinaesthetic learning is that which uses touch to learn. Hand over hand to show the child how to complete the task is kinaesthetic. Modelling the alphabet out of clay, building something out of blocks, and writing are also kinaesthetic.

• Auditory learning is that which comes in through sound such as a lecture, the most common style used in classrooms.

• uses real positive reinforcers that meet the child’s needs, not the teachers, This means we don’t hug, we don’t clap, we don’t shout hooray. They may be positive reinforcers for other children, but end up being punishment for those with autism because of the pain they cause through the sensory system.

• is developed around the individual needs of the particular child and at the same level of education (or higher) that their peer age group is learning.

• is very well organised with little down time

• and MOST OF ALL!! - is based on extremely high expectation levels (people with autism will meet your expectation level, wherever it lies)

 

                  “When the teacher is well prepared and assumes all students are capable, I sit quietly and behave. When the teacher is disorganised and assumes we are stupid, I can’t control my outbursts. Awful feelings come over me and I have to leave the classroom.^[vii]”

 

5. Be prepared to put variety into the schedule throughout the day in order that the child can develop their own ways to cope with the real world. For example, use deep pressure as a calming technique, let them relax in an empty quiet room for a time, use physical exercise to build up “good” endorphins, allow them to stand for some activities and sit for others, and so on.

 

6.  Recognize that a lot of the extreme behaviours of people with autism are directly linked to their high level of anxiety and the resulting meltdown. At these times, the student is in no way capable of understanding or controlling their behaviour. If the child is prone to these anxiety attacks (the fastest way to find out is to check their heart rate when they suddenly go out of control), help them learn how to control the attacks themselves. If their heart is racing, have them feel it by putting their hand on their chest and then allow them to learn how to slow it down themselves by deep breathing (in through the nose, out through the mouth). You can breathe with them to show them how. This gives the child the ability to be control of their own body in a healthy way. Respecting their use of repetitive behaviours in order to decrease their anxiety will decrease the amount of meltdowns they experience.

 

7. Gradually move away from one on one activities with the child/teacher’s aide, to full inclusion with normal children. Be aware that the stimulation is likely going to cause problems at first. Praise them for how well they are coping so that they can take pride in learning and using their own coping skills. Share the child’s stimulation experiences with the other children. They can and will accept and understand far better than most adults have a tendency to.

 

8. Allow the child to have a choice in activities whenever possible (but not all the time). This allows them to practice the decision making process we all need throughout life. Always be prepared to have them deal with the consequences of whatever choice they make.

 

9. Teach them in the ways that you would a normal child: read to them and with them, sing to them and with them, act out scenes with toys or in person, use play dough to create the alphabet or a zoo full of animals, cook with them, clean with them, . Use a multiple of learning styles (auditory, visual, kinesthetic) with each task whenever possible. If they don’t want to use a pencil, try a paint brush with a long handle, or felt markers. Introduce them to the computer as early as possible with educational materials, not just games.  Use sand as a creative way to desensitize the finger tips, pour it, dig in it for buried treasure, tunnel through it, etc. If they don’t want to cuddle with you or sit still when you read (in a low voice, of course), allow them to do whatever they please, but continue to read. They can do two things at once.

 

10. The only place that a child learns how to react in the community is out in the community. I believe that this is the responsibility of the parent, not the school system. Educational programs should not be wasting precious time exposing children to McDonalds, or how to ride a bus, or grocery shopping, and so on. However, someone has to do it. Parents: take charge. Take them shopping, to restaurants, to parks, to museums and so on. Don’t forget that too much stimulation may be a factor in the level of undesirable behavior so choose the activities accordingly. Go to a community store instead of a huge shopping complex. Choose a dim quiet restaurant with table cloths and soft classical music in the background instead of a fast food joint. Choose a slow time at the establishments, instead of the busiest time of the day.  Start with short trips with a single focus. For example we are going to the hardware store to buy a pot for this plant, not an all day excursion at a shopping mall. Or, we are going to the zoo to see the gorillas, not an all day affair which includes a picnic and a visit to every cage. All this will come in time. Always remember that your expectation level will affect the outcome of any excursion.

 

11. Use Social Stories as described by Carol Gray in her social stories books to deal with specific problems. They allow the child to better understand and accept many situations. Be prepared to fill in the why’s of situations the child is involved in. Although they may not ask why, they still need to know why. Share how people are different and explain the expectations of others so that the person with autism can understand another viewpoint.

 

12. Use a schedule (drawn out, or written) to allow the child to know what’s going to happen next. This does not have to take much time, but it does give them a sense of security. I prefer a piece of paper, which can stay with the child rather than the pec chart on the wall, which constantly needs to be checked and changed. Each activity can be crossed off as it is completed. It can be thrown in the garbage to signal the end of the day. I have been in classrooms where the teachers have used the majority of the day checking and rearranging a pec chart schedule with a child, wasting valuable educational time.

 

13. Always remember that each child has only one lifetime to learn. If we choose not to teach him/her at the same time as his/her peers are being taught, we are wasting his/her life. He/she will never be able to get the time back again and will be behind his/her contemporaries for the rest of his/her life. Is this fair? We can and have created the appearance of mental retardation for many of those with autism in the past,  through our lack of understanding and decisions which were limiting instead of productive.

 

14. Assessment will not be easy, especially in the beginning. You may have to be very creative in developing ways to assess these children appropriately. However, if you keep track of each accomplishment when it happens (for example: you know that he/she knows the colors because you read a story and he/she pointed them all out to you) then one does not need to assume the child does not know the colors when they do not color the page you have designed for a test. Refusal  or inability to perform likely has nothing at all to do with actual knowledge.

 

    Be careful that you do not get stuck on assessment. Education is NOT about assessment, but about providing the information to our children that they need to know. The symptom of autism is an impairment in communication which means that clear assessment is not always possible. This does not give you an excuse to stop taking responsibility for the job you are hired to do. Continue to teach in spite of the disability.

 

 15. We can become teachers who have a positive influence in each child’s life by recognizing that children with autism are children with great promise if we provide them with the settings and support that they need. Good luck to all of you! ^[viii]

 

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^[i]Dan Treacy, “A Meditation”, The Communicator (newsletter for the Autism National Committee), Vol. 7, No. 1, Spring, 1996, p.8.

 

^[ii] Scott McGifford, (1998). personal correspondence.

 

^[iii] Donna Williams, (1994). Somebody Somewhere, Published by Doubleday of Toronto, p.101.

 

^[iv]Ian Weatherbee, “M-Y...N-A-M-E...I-S...I-A-N”, Guideposts, August, 1993, p.4&5.

 

^[v]Sean Barron, speaking at the West Virginia Autism Society Annual Conference, November, 1996.

 

^[vi]Temple Grandin and Margaret Scariano, Emergence Labeled Autistic, Novato, California: Arena Press. p. 60.

 

^[vii]Sue Rubin, “Killing autism is a constant battle”, The Communicator, Vol. 7, No.1, Spring, 1996, p.12.

 

^[viii]copyright Gail Gillingham, Autism Consulting Service, November, 2003.