Autism

Autism

The movie, Rainman, starring Dustin Hoffman and Tom Cruz, brought public attention to a person with a rare condition, autism. Raymond is originally seen through the brother's eyes as an opportunity, not a person. As the movie progresses, we learn to care emotionally and deeply for Raymond - Raymond the person. Raymond's quirks first seem strange, laughable, then become amusing, and the denouement finds us recognizing Raymond as a richly complex, lovable, fully dimensional character.

This is a powerful movie because it breathes life into the process of seeing a person as an object or set of symptoms and then over time, coming to value the person and seeing those actions that seemed foreign and disturbing as individual traits of less importance. This is critical when we speak of children with autism.

It is only in the 1940's that Leo Kanner classified and defined this rare condition for the first time (though of course, people were autistic prior to that time). Progress in the past decade shifted emphasis from seeing the symptoms to seeing the child and looking for discrete ways to reach youngsters and build connections rather than being more focused on the barriers.

In the early days of recognition, parents were often blamed for autism and many youngsters were institutionalized as symptoms emerged. In addition, a set of global behaviors were viewed as symptoms and the prognosis for improvement of youngsters with the behaviors were seen as a poor fit for most educational programs. Few programs actively sought to reach into the child's world, and many youngsters were so misunderstood that they were labeled as having a form of childhood onset psychosis.

Look at this link to gain a positive feeling about how one set of parents cherish their son and two sets of grandparents honor their grandchild. Click here to go to Oliver's web site. Once you get to know Oliver from this vantage point, the IEP process and importance of individualizing Oliver's education so he can be successful - so the whole family can rejoice in his successes, becomes more clear.

Definition: Autism is a developmental disability that usually manifests by the age of three. It is a spectrum disorder, that is, the symptoms and characteristics can appear in a variety of forms, mild to severe. It is characterized by deficiencies in verbal and nonverbal communication skills, reasoning and learning skills, social interactions, and abnormal responses to sensations.

Some children who are autistic show symptoms from birth, while some youngsters appear normal until the age of 24-30 months, when they begin to experience delays in play, language, or social interactions.

Communication may be delayed or language development may be absent. There may be a very short attention span, inappropriate use of words, such as repetition of questions or statements rather than a reasonable response to others' questions or suggestions, may not use pronouns, including I, me, words may seem meaningless, repetitions of what was just said, or echo like (ecolalia), expressive and receptive language may be very literal, speech may not be related to what is happening or part of the immediate surroundings

SO . . .

Students may
A student may not
use repetitive phrases -- "The little mermaid, draw the mermaid, draw the mermaid, draw the little mermiad." fully acquire language facility or adequate ability to communicate ideas and thoughts
repeat the phrase spoken to -- Did you do your homework? "Do your homework?" stay on a topic or answer a question with a related statement
Speak almost in sentences, but omit "I", "Me", "Yes" Initiate conversations
answer questions or statements with unrelated ideas use pronouns
use very literal language with symbolism missing carry on a conversation

 

Sensory Impairment may include lack of sensitivity or hypersensitivity to stimuli from sight, hearing, touch, pain, smell, or taste. Youngsters who have been able to communicate later in life often report excruciating feelings and sensations that they could not explain to others, such as great pain or irritation when touched, helped or dressed in some of their clothing. The also report hearing unbearable, unrelenting sounds, odd smells becoming very upsetting, and the impact of the environment seeming generally noxious.

SO . . .

Students may
A student may not
be startled and upset by loud or unexpected noises understand directions
respond inappropriately or aggressively to being touched comply with requests since doesn't process them
be hypersensitive to visual stimuli - even seek and stay affixed to light displays, flicker effect, high color images be able to tolerate novel situations at first - strangers, crowds, new settings, fire alarms, a substitute, people unexpected entering the room

Social Interaction may include inability or lack of interest in making eye contact, seeming unresponsiveness to social cues; lack of interest in socializing or interaction with others, seeming lack of bonding to family members, little or no apparent interest in peers, little or no cooperative play, time spent in extreme isolation, few gestures or utterances directed to others.

SO . . .
Students may
A student may not
prefer to be alone, play in isolation, not interact with others show normal attacments to people
engage in self stimulating activities - make repetitve noises, watch own hand fluttering in light, rock back and forth provide typical nonverbal cues such as smiling, hugging, using the face to express feelings or provide cues to internal affect
show little emotion that reflects empathy or affection make eye contact with others
engage in repetitive motions and sounds, non-stop engage in imaginitive or creative play

Behaviors may include a youngster who is overactive or passive; continually repeats a single idea or stimulus or shows rigid adherence to ritualistic behaviors in a rather obsessive manner. These may unclad self-injurious or aggressive behaviors; or tantrums following a change in expected structures. These self injurious or self-stimulating actions consume a considerable amount of waking time, with the youngster becoming extremely anxious when hearing sudden loud noises, unexpected events, changes in situations.

Ritualized activities may be important, with intense, unflagging need to follow through on self imposed or daily routines, sometimes including stereotypical behaviors, like rocking and hand flapping, and the youth seems more unrelenting and obsessive or compulsive when hampered.

Those with autism live relatively normal life spans. Autism is not considered progressive but it is unpredictable. Some symptoms may change or even disappear.. The severity and nature of symptoms vary widely between individuals.

More definitions of autism

Read a few of the links that follow. When finished, list some of the things you feel may contribute to autism.

Information

Guide for educators - very detailed information

Center for the Study of Autism - Great links

Inside view of Autism - Temple Grandin's first hand account

Overview of Autism - by Stephen M. Edelson

Learning styles of students with autism - Gary Mesibov

Diagnosis using the DSM-IV

Dr. Koop - nature of autism in medical dictionary

Autism links -over 400 links

Autism Resources

LKS - Landau - Kleffner Syndrome

Multiple sites on autism by J. Condon

Son-rise - authors and commercial site

Autism society web site - complex site with many support features - be sure to get around to the numerous areas by clicking on getting started

Parenting links - great sites on autism

Hyperlexia - large number of links

Things "not to say" parent comments and pain

Many of these great links were explored and shared by Stephen LeMasters

 

Tips and Strategies

Educational Interventions
Personal Notes

Auditory intervention as a technique

Communication -strategies for teaching skills

Behavior plans for youth with autism

ABA resources - R. Saffran's huge collection of sites and resources

Learning styles and autism

19 Specific strategies for teachers

FAQs about autism and education

Facilitated communications

Teacher Internet resources

 

Basic Needs

Gathering information and reading about youngsters with the wide spectrum of issues and mannerisms of autism may obscure our earlier discussions about the importance of seeing the child first and recognizing the importance of meeting basic needs.

SO . . . .

First things first.

I am me first, and a label second.

I am self involved first, and find ways to please and understand others, second.

I have needs, and my ability to express those needs is critical to being happy or feeling unfulfilled.

If I am feeling unfulfilled, I may behave in ways that express how unfulfilled, thwarted and unhappy I am.

If I go for a long time feeling thwarted, and cannot communicate, I may express needs in ways that oppress others.

These statements are statements of human nature -- this is the way healthy people feel.

It is normal for human beings to respond with strong emphasis when not getting needs met.

If these ideas are offensive, you may believe:
Exactly!
Ouch! This is complex
School is about content, not feelings.    
In a group setting we don't get needs met.    
I don't agree that it is healthy to get needs met.    
I get upset but I control myself -- so can kids.    
If I couldn't communicate, I would quit needing.    
There is never a good excuse for others to oppress me.    
It's basic! Children follow rules or leave the school.    

This frames the issue in strong terms. For many years the teaching role gave us an impenetrable force to do what was right to get content across, and there was an underlying tone that role and responsibility were justifications for whatever we might do to maintain and hold true to that set of beliefs. If a youngster interfered with content dissemination, then things were done to force the child to comply or force the student out of the school setting.

Special education and inclusion rocks those ideas to the core. Rather than disposing of troublesome youth, our courts and laws mandate that we keep youngsters in school, that every child gets an opportunity to learn as that child can learn. Now teachers are expected to find ways to blend needs, to deliver content to students who may not be receptive, initially.

Some people find it difficult to work with autism because it pits a very strong set of basic needs in conjunction with our own needs. This really is quite basic

Suppose you agree with the ideas in the lilac box. Does that mean you have to change? No. Education has room for all kinds of teachings and a wide variety of teachers. Being an excellent teacher comes in a lot of flavors. However, it does mean that working with a youngster who is troubled probably will be too invasive and upsetting.

Suppose you look at the box and come to the realization that children with autism are children with needs and those needs are just as important as your own. What do you do now? Some people have been very successful and they report some commonalties:

Children with autism have the same basic needs we do Behavior is fulfilling a purpose.

Children with autism may not be able to clearly express basic needs in ways we are used to or with the comfort we might wish, and they may cross social barriers in expressing those needs.

Responses you cannot understand are not intended to hurt others, just the result of cluelessness - stemming from different norms, communication styles, ways of seeing or processing, not recognizing non verbal cues.

Children with autism may not be able to reciprocate or initially attend to social clues or cues and reward us with social savvy.

Initially you may not get much reinforcement but you are probably making a big difference for the child if you are fully present..
Plenty is going on inside, even if we cannot access the "rich internal dialogue" or understand the private hell of too much noise, too much sensation from clothing, too much pain from lights, too much stimulation from being touched. A person is a person is a person, and the really important love is the kind that is given freely without expectation for immediate gratification. The important teaching may be seeds we plant without seeing the girth of the mature tree.

Let's also review basic needs:

Hierarchy of Needs
Classroom equivalents

Self actualize - reaching beyond self

Esteem - successful doing what is best for self, fulfilling gifts, sharing with others, being enough to have the energy to reach beyond self

Affiliation - Belonging, acceptance, social balanced with personal needs

Security - safety, structure, comfort zone, ritual

Physiological - air, food, water, space, stimulation,

With even a cursory understanding of what may be occurring for youth with autism, we can see a picture emerging. Many youngsters are deeply enmeshed in Physiological needs and Security needs. When these most basic messages are driving a youngster, when they are pressing, the need to know and learn, to belong, to feel loved, cannot yet be addressed.

Though we only have spotty communications and feedback from youngsters with autism - and most of that from youngsters who are not severely or profoundly involved or who have miraculously recovered, the kind of things we have learned suggest that these youngsters are really suffering. Some describe the sensation of being touched as being uncomfortable -- uncomfortable ranging from distracting and miserable to painful and agonizing. Some describe the sounds they hear as being like the static from TV, only so loud that it drowns out voices and other noises; some describe color sensations and light being really distressing and distracting. From these reports we may assume that some youngsters are bombarded by distress from stimuli in the environment that the rest of us can casually tune out or disregard.

SO . . . .Just as you would with anyone you care for, pay attention to the needs - the real, pressing, desperate needs. When a youth needs space or stimulation, instead of becoming involved in a power struggle such as - "You may want that now, but now is not the time and this is not the place" kind of response, engage in problem solving. This chart gives an example of a positive and supportive way to approach this.

Student action

Needs

Creative solution
Hand flapping or self stimulation actions occur.

Student - to be soothed - Safety

Teacher - to teach and have peace - Safety, self actualize

Class - to learn, concentrate - Safety, need to know

Increase the level of comfort and safety for the student who is acting out and make a place where actions will not disturb others; help class to increase tolerance by helping them understand the actions in a positive frame - ways they self soothe,etc. Teacher - observe time of day and check to see if this is a pattern and if so what sets it off. While student is being soothed by others, move forward with the lesson.
Student becomes agitated

Student - to be soothed, to know that the bell is going to ring and be ready for it

Teacher - to make transitions easily

Class - to make transitions easily

Set up a system that communicates by picture, gesture or words, that the bell is about to ring so the student can adjust. If helpful, help the student learn to put on head phones moments before the bell rings, and do this consistently through the day. Students may assist with this - perhaps even one for each bell through the day.
     
     
     

Fill in the next three cell rows, using the ideas you gain from experience, from materials in the text and in your web searches. Identify a likely student behavior that may hamper learning and then go through the process of defining needs, then finding a solution that allows everyone to get needs met

Behavior modification can help, particularly with youngsters who need to be trained. In fact, training that recognizes the need to "gentle" the person first and then work on compliance can shorten the youth's frustration, since we are limiting and focusing responses to a few behaviors.

 

Asperger's Syndrome: A Developmental Puzzle

by Michael McCroskery

This is a nice piece on Asperger's Syndrome. Because autism covers such a wide spectrum of symptoms and different causal agents, it is easy to overgeneralize about when a child should be considered as autistic and when there are not enough specific similarities to use that classification. The more we know about the different types, the better we can serve youth.

Cognitive and social skills, which shape personality and character, develop throughout life. However, genetic or environmental obstacles can obstruct development, especially early in life. One such obstacle is Asperger’s Syndrome. Asperger’s Syndrome (or AS) is a congenital neurobiological condition that affects 0.25% of the population.

AS is linked to autism spectrum disorder, and includes autistic-like behavior and marked deficiencies in social and communication skills. AS individuals are of average to above average intelligence, some with unusual gifts and creativity. As a diagnosis, it has been known in Europe since the 1940’s, but has only been included in our medical diagnostic manuals since 1994. Thus, many adults and children remain undiagnosed. Consequently AS is relatively unknown and not clearly understood, even among professionals. AS is indeed a puzzle, and researchers are working to identify the pieces and form them into a meaningful picture.

My experiences as an adult recently diagnosed with Asperger’s, together with my studies in child development, suggest that individuals with AS are like young children—stuck in time, so to speak, never able to advance beyond early stages in social, cognitive and language development. For example, most AS difficulties center around social competencies. A salient characteristic of young children is egocentrism—the inability to recognize that other people think and feel differently than oneself. Persons with Asperger’s Syndrome remain in this egocentric state, unable to interpret the thoughts and emotions of others, or to experience empathy.

Another name given to this condition is "mind blindness"—the incapacity to visualize the mind states of others. Thus it is hard for AS individuals to develop normal friendships, as either children or adults. Without empathy, they become emotionally stunted. A related problem is the inability to carry out social referencing through understanding nonverbal cues, such as facial expressions or body language. Such cues are "invisible" to those with AS. A piece of the AS puzzle related to cognitive skills is attentiveness. "Attention span" is the number of mental elements that one can remember at any given time.

During preschool years children exhibit "centration," focusing on one piece of information at a time, and briefly at that. The ability to process several elements simultaneously, or to remain focused on a task, comes with greater cognitive sophistication. Unfortunately, the tendency towards centration seems to remain with the AS individual into adulthood. One diagnosis commonly given prior to accurate diagnosis with Asperger’s Syndrome is "attention deficit disorder."

A third part of the Asperger’s puzzle relates to language. An early stage of language development includes "telegraphic speech"— abbreviated speech in which words not essential to the meaning of a sentence are omitted. People with AS seem not to develop beyond this stage, further stunting their communication skills. The easy flow of spontaneous social conversation is usually beyond their capacities. They must learn social "scripts" through special training and repetition. Even then, AS speech tends to be stilted and formal. Also, children in early stages of language development are quite literal. Figurative use of language, symbolic representation, nuances and double meanings are a later development. Once again, the individual with Asperger’s remains in a childhood realm—that of literalism. Linguistic sophistications such as jokes, puns and idioms are hard for AS individuals to grasp.

Even the most basic of social interactions become a confusing and humiliating experience. Understandably, AS individuals encounter enormous difficulties during the transition into adolescence, and later into adult life, since they have not completed the requisite developmental tasks or moved beyond early stages in language, cognitive and social skills. They frequently remain emotionally dependent upon parents or family members, and suffer from separation anxiety and insecurity when trying to live on their own. Friendships with peers, romantic relationships, marriage and parenting, and entry into the work world are usually beyond their capacity. They remain, in many debilitating ways, stuck in time, trapped in the AS puzzle. They are, in essence, childlike beings attempting to live in an adult world, but without the support and understanding that children are afforded.

References

Asperger Syndrome: Through the Life Span. University of Delaware. 11 July 1996

Asperger's Syndrome- Information Package. Autism Society of America. 23

April 1997 Asperger's Syndrome and Making Sense. Cross, Hubert. 11 January 1999.

Christopher Marsh: Asperger's Syndrome and me. 12 January 1999

O' Neil, John. "A Syndrome With a Mix of Skills and Deficits." The New York Times. 6 April 1999: D1, D4.

Sroufe, L. Alan, Cooper, Robert G., and Ganie B. DeHart. CHILD DEVELOPMENT- Its Nature and Course. (U.S.A.: McGraw-Hill, Inc. 1996) 6-7, 95, 188, 254, 268, 330, 359- 360, 369, 606.

Yale Asper Syndrome Assessment and Diagnosis Guidelines. Yale University. September, 1999

 

 

Asperger's syndrome LKS - Landau - Kleffner Syndrome Angelman Syndrome
Prader-Willi Syndrome Pervasive Developmental Disorder (PDD) Rett's Disorder /syndrome
William's Syndrome Fragile X Syndrome

Savant

 

Book List

Biklen, Douglas. (1993). Communication unbound. Teacher's College Press. Facilitated communication claims that this technique can open a world of communication to autistic children. The book shares this and the controversy surrounding the method.

Grandin, Temple, & Scariano, Margaret M. (1986). Emergence: Labeled autistic. Novato, CA: Arena Press. The first author was diagnosed with autism. She tells the story of her emergence and her adjustments to the nonautistic world.

Grandin, Temple. (1996). Thinking in pictures: And other reports of my life with autism. New York: Vintage Press. The author complements her earlier book (with M. M. Scariano) with her encounters with the world. She offers rare insights into the cognitive experiences of a person with autism.

Hart, Charles. (1989). Without reason: A family copes with two generations of autism. New York: Harper & Row. Both the author's older brother and son were diagnosed with autism.

Kaufman, Barry. (1976). Son-rise. New York: Harper & Row. A father's journal of an autistic boy, Raun, and the family's attempts to break through his isolation. A look at a detailed method is central to the book.

Martin, Russell. (1994). Out of silence. New York: Henry Holt & Co. The author's nephew, Ian, became autistic after a reaction to a routine vaccination for diphtheria, pertussis, and tetanus (DPT). The book is a scholarly account of autism and explores the essence of language learning--the child's attempt to cope with the objective world.

Park, Clara Claiborne. (1982). The siege: The first eight years of an autistic child (2nd. ed). Boston: Little, Brown. A mother's personal account of the first eight years of her daughter's life.

Williams, Donna. (1992). Nobody nowhere. New York: Avon Books. This book takes a personal journey with a girl who is severely withdrawn and autistic into an adult who received a college education. The book sheds light on one person's process of recovery.

Williams, Donna (1994). Somebody somewhere. New York: Times Books/Random House. In this sequel to Nobody Nowhere, Williams discusses the idea that autism is not a blunted awareness of the environment but rather a nearly overwhelming awareness of it. She suggests that the withdrawal characteristic of people with autism is really an attempt to cope with a barrage of sensory stimuli.

Web site with book recommendations

Books suggested by the Autism Society

Autism Treatment Guide, Elizabeth Gerlach, Four Leaf Press

A Parent's Guide to Autism, Charles Hart, Simon & Schuster.

Children With Autism: A Parent's Guide, Michael Powers, Woodbine House.

Parent Survival Manual, Eric Schopler, Plenum Press.

Autistic Children, Lorna Wing, Carroll Publishing.

Mixed Blessings, William and Barbara Christopher, Abingdon Press.

The Siege, Clara Claiborne Park, Little, Brown, & Co.

Keys To Parenting the Child with Autism, M.T. Brill, Hauppauge, NY: Barron's.

Books geared towards siblings:

Joey and Sam, Illana Katz and Edward Ritvo,

Real Life Storybooks. The Babysitters Club: Kristy and the Secret of Susan, Ann Martin, Scholastic Inc.

Russell is Extra Special: A Book About Autism for Children, Charles Amenta III, Magination Press.

Books written by People who live with autism

Emergence: Labeled Autistic, Temple Grandin, Arena Press.

There's A Boy in Here, Sean and Judy Barron, Simon & Schuster.

A child called Noah, J. Greenfeld, Harcourt Brace Jovanovich.

A place for Noah, J Greenfeld, Henry Holt.

A client called Noah, Henry Holt.

Thinking In Pictures, Temple Grandin, Doubleday.

Soon Will Come the Light, Thomas McKean, Future Educators.

Nobody, Nowhere, Donna Williams, Times Books.

Books concerned with education of children with autism

Teaching Children with Autism, R.L. Koegel and L.K. Koegel, Woodbine House.

Educating Children with Autism, Michael Powers, Woodbine House.

Teaching Children with Autism, Strategies to enhance communication and socialization, Kathleen Ann Quill, Delmar Publishing, Inc.

Preschool Issues in Autism, Eric Schopler, Plenum Press.

 

 

 


E-mail J'Anne Ellsworth at Janne.Affeld@nau.edu

Course developed by J'Anne Affeld


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