People Who Are Different Are Special… Like You

People Who Are Different Are Special… Like You

children with disabilities

Fred Rogers, Extraordinary Friends, written in 2000.

“You are special.” That’s the comforting message from Mister Rogers. And by “special,” Fred Rogers does not mean empty praise merely to inflate egos. Each of us is unique in his or her special way. With this, it is apt that Mister Rogers would introduce readers to other children who are different from them, in that they have a disability. With his characteristic empathy, understanding, and honesty, he acknowledges that these people who look or act different can make on feel uneasy. Yet, after taking the time to get to know these people, they are also much like them: they have hobbies, favorite foods, and like to be with others. In that way, Mister Rogers neither puts these extraordinary friends on a pedestal (what many in the self-advocacy community refer to as “disability porn”), nor presents them as objects of pity. Before he starts his narrative, Rogers introduces us to six children. Three have disabilities (though he does not reveal what kind), and three do not. With each of the six children, Mister Rogers simply explains what they like to do and their favorite food. Throughout, Mister Rogers gives tips on etiquette, to ensure both parties are comfortable. In acknowledging differences as well as what we share in common, we are simply being real friends.

Although the book’s positive message merits five stars, the writing is better suited to having an adult read the book aloud to the child. The message, however, is very much geared to the child, told in Fred Rogers’s own wonderful way.

It is worth recalling that Fred Rogers’s affinity for children very much extended to those with disabilities. Quite a few of these children were guests on his show. These children never forget the kindness of Mister Rogers! One of the most beautiful moments was a very special reunion when he was inducted into the hall of fame. No more needs to be said about Fred Rogers and the reason so many people continue to adore this special man.

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A Second Look at “Uniquely Human”

The book Uniquely Human argues that autistic behaviors are human behaviors.
We feature many of our articles in “Celebrating Individual Abilities” on our new agency blog, which also contains announcements of Advancing Opportunities, along with brief items of disability news that are not sufficiently detailed for this blog. In addition, we reviewed Uniquely Human in this space last year. To see it again, with an update on Dr. Barry Prizant’s brief speech at the United Nations on World Autism Day, March 31, please check out the article on our newly rebuilt and much-improved website, as we continue our blog series on autism appreciation and awareness with a review of Dr. Prizant’s excellent book, “Uniquely Human.”

Autism: Another Way of Being Uniquely Human

Uniquely Human

A review of : Prizant, Barry M. Uniquely Human. New York: SImon & Schuster, 2015.

For many parents, a diagnosis of autism answers one question but does not explain why their son or daughter has such difficulty expressing feelings, needs, and desires or why their social behavior differs so much from that of their peers.  Confronted by this mystery, these parents are understandably anxious.  What Barry Prizant seeks to do is to “turn self-doubt in to confidence and comfort, and to help them see as possible what they thought was impossible.”  The starting point is to adopt a fundamentally different way of seeing and understanding autism.  Most educators speak of “autistic behaviors,” undesirable traits that should be eliminated.  That is the classic medical model of autism, a condition or mental illness, or even a psychiatric abnormality.  That, says Prizant, needs to change.  “Autism isn’t an illness.  It’s a different way of being human…. To help [children with autism], we don’t need to change them or fix them.  We need to work to understand them, and then change what we do.”  In other words, Prizant adopts the perspective of neurodiversity, that conditions such as autism are part of our genetic make-up, a different way of thinking and being, “uniquely human.”  As such, this book makes an excellent companion to Steve Silberman’s NeuroTribes; both books are very welcome additions to the literature on autism.

 

Understanding Emotions
How do we work to understand children with autism, to help them?  And how do we change what we do?  Prizant explores these questions in the first part of Uniquely Human, “Understanding Autism.”  He proposes six steps:

Ask “Why?”  The first step is to go beyond answering why a child exhibits certain behaviors or patterns of speech with “because he has autism,” which leads to answering a question of why he has autism with “because he shows certain behaviors.”  Asking “Why?” entails going deeper, inquiring why a child does what she does.  The answer, says Prizant, is that the person is feeling emotional dysregulation.  In other words, people with autism experience discomfort, confusion, and anxiety more intensely than do most people, along with considerable difficulty coping with these emotions.  Many people with autism do what they do because it helps them, these behaviors are coping strategies or mechanisms.  What the autistic child wants – and needs – is information (even if the answer is readily apparent) to reduce the anxiety of uncertainty.

Listen.  Asking “Why?” is about empathy, and so is listening.  What may sound absurd or silly is, in fact, not.  The autistic child is telling a story.  For example, repeating a phrase, known as echolalia, is not nonsense talk, just another example of autistic behavior.   And it’s not “autistic behavior,” a pathology that presents an obstacle to the child fitting in socially.  Echolalia is, in Prizant’s words, an alternative way of communicating, using language for the same reasons everyone else does.  In fact, echolalia serves as a starting point, a learning strategy to acquiring language.

Accept enthusiasms.  Enthusiasms is Prizant’s term for what many people term “obsessions.”  Rather than being another “autistic behavior” that needs to be eliminated for the child to fit in socially, provide the child with autism with a motivational tool for learning.  Teachers and parents should use the autistic child’s enthusiasms as a bridge to learning other skills.  Hobbies fill a need in all of us: “An experience feeds a basic neurological need to be engaged, to appreciate beauty, and to experience positive emotion.”  These interests can lead one to find a uniquely fulfilling path in one’s work and life, as we are reminded by Sir Ken Robinson in his book, The Element. In this chapter, Prizant gives several excellent examples.

Understand trust, fear, and control.   According to Prizant, autism is best understood as a disability of trust: trust in the body, the world, and others.

  • Trust in the body. Children with autism have to cope with involuntary motor movements and, in the brain, thoughts.
  • Trust in the world. From the perspective of a child with autism, any change in routine is a violation of his trust in the world around him.
  • Trust in people. Because many people with autism find it difficult to “read” people, to predict their behavior, unexpected actions (even those that are entirely unintentional) pose a threat.  Autistic people go through life in a state of a heightened, hypervigilant alert.  Other people with autism have the opposite challenge: they react more slowly than others, internalizing their anxiety rather than directing it outward through behavior.

When one’s trust is challenged, the natural reaction is often to seek to exert control.  That does not mean that the autistic person is controlling or that such behavior needs to be extinguished.  What parents and teachers need to do is to build trust by acknowledging attempts to communicate, giving the person with autism choices in planning events, accepting the individual’s dysregulated emotional state, being dependable and clear, and celebrating successes, even small ones.

Recognizing emotional memory.  Emotional memories are those that are associated with a happy or sad, hopeful or frightening event.  Given that many people with autism have exceptional memory and, as stated earlier, often live in a state of heightened alert (similar to PTSD), these emotional memories are particularly strong in people with autism.  “A seemingly small association,” says Prizant, “can trigger what seems to be a disproportionately dramatic reaction.”  Anyone working with an autistic child must try to avoid these emotional triggers or offer something that can provide comfort, such as noise-cancelling headphones.

Helping with social understanding.  People with autism having difficulty with social understanding react in one of two ways:  They are oblivious to their blunders, or they are extremely anxious about what they do not understand.  Social skills training can help, but because the rules of social understanding come with so many exceptions, such teaching does not always work.  At the very least, social rules need to be taught very clearly and with directness – and explaining the meaning of phrases exactly and literally.  In addition, labeling pictures of people expressing certain emotions is ineffective; describing emotion in words is one of the most abstract tasks anyone can undertake.  It is better to introduce the appropriate label at the very moment that person is experiencing that particular emotion.  Moreover, says Prizant, the effort of autistic individuals to succeed in this area often causes them great stress.

 

 

Living with Autism
Teaching and caring for a child with autism takes a special person, someone who has “got it.”  These people know how to relax with the autistic child, to relate to him.  What does it take?  As Prizant explained, these people have empathy and sensitivity.  They ask “Why?” – why an autistic child is acting at this time and not another.  People who have “got it” share control with the autistic child.  They have a sense of humor.  They instill trust.  They are flexible.  What these people who have “got it” do not do is compile a list of deficits.  Rather than paying attention to a plan, they pay attention to the child, overlooking small setbacks in favor of seeing the overall trajectory of improvements in the way the autistic child is able to self-regulate.  For teachers and others working with the child with autism, they respect the parents’ hopes and dreams.  After all, says Prizant, parents know their child best.  Parents, in turn, should trust their gut, follow their instinct, while finding support groups with other parents of autistic children.  In addition, parents should actively advocate for their children but, in so doing, know the difference between being assertive and aggressive, as Prizant aptly discusses.

Hans Asperger and His Groundbreaking Paper

Uta Frith, Editor. Autism and Asperger Syndrome Cambridge University Press, 1991 English translation of Dr. Hans Asperger

In Autism and Asperger Syndrome, Editor Uta Frith has published the first and only English translation of Dr. Hans Asperger’s seminal 1944 paper. The book was published by Cambridge University Press in 1991.

Ever since Johns Hopkins professor Leo Kanner described a condition he called autism in his seminal 1943 paper,”Autistic Disturbances of Affective Conduct,” most professionals and laypeople alike had an impression of autism as being characteristic of highly disturbed, poorly functioning children – and a rare condition, at that.

Then, the following year and an ocean and a world away, a doctor in Vienna, then part of Nazi-occupied Austria, portrayed autistic children of a radically different type.  The Viennese doctor’s name was Hans Asperger; his paper, however, would remain virtually unknown for nearly a half century.  In fact, “Autistic Psychopathy in Childhood” first appeared in English translation in 1991.  This extremely important book, Autism and Asperger Syndrome, presents Uta Frith’s translation for the very first time, all in context of her commentary and a series of other papers by other important researchers.  Most notable is Dr. Lorna Wing, who developed and advocated for the term autism spectrum, especially notable here in that Kanner’s and Asperger’s descriptions of the same condition vary so considerably, this book describing the higher-functioning form of autism that bears Asperger’s name.

Dr. Hans Asperger in his Vienna clinic with autistic boy autism special education human dignity

Dr. Hans Asperger (1906-1980) works with one of his young charges. Asperger believed these children had the potential for unique and noteworthy endeavors and deserved to be afforded full human dignity.

Most notable is that, “far from despising the misfits, he devoted himself to their cause – and this at a time when allegiance to misfits was nothing less than dangerous.”  It bears remembering that Nazism espoused putting people with genetic deformities, such as cognitive disabilities, to death; Nazi ideology deemed these people not worth the bread they ate and a threat to the genetic future of the Aryan race.  By caring and advocating for these children, Dr. Asperger was risking his life.

Going further, “Asperger’s views on the positive value of autism as an important aspect of creative thought and intellectual style are … fresh and provocative.”  In fact, Asperger’s 1944 writing and Frith’s 1991 commentary presaged the current neurodiversity movement, beautifully expressed in Steve Silberman’s “fresh and provocative” book Neurotribes.

NeuroTribes Asperger syndrome and autism book

NeuroTribes carries on where Hans Asperger left off. The 1991 book on the right contains the only English-language translation of Dr. Asperger’s seminal paper.

In Hans Asperger’s paper, it is worth noting his comment that “…those who know such children never cease to be surprised at the striking coincidences of detail.  The autistic personality is highly distinctive despite wide individual differences.  Our method would have failed if it ignored the differences and if it let each child’s unique personality vanish behind the type.”  This observation leads us to the second important paper in this volume, that of Lorna Wing, in which she compares the work of Drs. Asperger and Kanner and outlines her groundbreaking theory of autism being a spectrum of abilities while sharing important characteristics.  Though the other four papers are worth reading as well, these first three make this book, nearly a quarter-century old, essential reading on autism.

 

 

 

 

 

Of Noteworthy Interest: Eagerly Anticipated Book Just Published

NeuroTribes Asperger syndrome and autism book

NeuroTribes carries on where Hans Asperger left off. The 1991 book on the right contains the only English-language translation of Dr. Asperger’s seminal paper.

In NeuroTribes, veteran journalist Steve Silberman chronicles the history of autism and Asperger syndrome, along with the lives and work of the two physicians who documented these conditions, so prevalent today but virtually unknown before World War II.  Silberman argues for nothing less than the (re)consideration of autism and Asperger syndrome as different ways of thinking, alternative ways in which the human brain works.  This philosophy is known as neurodiversity, one embraced by much of the disability advocacy community.  The idea, however, is not entirely new.  A Viennese physician by the name of Dr. Hans Asperger recognized the potential of the children in his care who presented with the then mysterious condition that today bears his name… back in 1943.  That was a time when such ideas, to say the least, were considered dangerous and punishable by death under the Nazi regime.  It’s a gripping history!

Equally astonishing is that Dr. Asperger remained virtually unknown for decades after his ground-breaking paper, which was not translated into English until 1991 (by Uta Frith, in the volume on the right) and has not been republished since then.

Please watch this space for reviews of both these books, along with another new book (also 2015), Uniquely Human: A Different Way of Seeing Autism, by Dr. Barry Prizant.

It’s So Much Work to Be Your Friend: Part V – Social Skills in the Community

   In Part I, I gave an overview of a book that, despite its 10-year anniversary, is still highly relevant.  Kids Need Love When They Deserve It Least: A Review of It’s So Much Work to Be Your Friend, by Rick Lavoie.  As I concluded, “Social miscues become “teachable moments.”  Or, to quote, Mr. Lavoie, “Kids need love most when they deserve it least.”  This sentiment, as well as the use of the term friend in the title, reflect Mr. Lavoie’s deep compassion and understanding of children, seeing issues from the perspective of the child, for which he has earned fame and respect in his early PBS videos, How Difficult Can This Be?: The F.A.T. City Workshop and When the Chips Are Down.”   In Part II, I covered how Mr. Lavoie explores why these children with learning disabilities and accompanying social skills deficits “do the things they do.”   In Part III, I discussed social skills on the home front, especially dealing with siblings.  Part IV reviewed social skills in school settings.  In this, the final section, Rick Lavoie examines social skills in other public places, along with how to meet, make, and keep friends.

Appropriate Social Skills in Public Places
   Every day, a child interacts with many people in the community, from family members to adults and peers in school to total strangers.  Each setting has its “social contract,” a Hidden Curriculum of unwritten rules.  One of the greatest challenges children with social skills deficits face is dealing with transitions, which is why these are the times of the greatest number of behavioral problems.  This problem is present in school; in the community it is even greater.  It is important for children to have the opportunity to interact with people in the community to practice and develop skills, gaining greater confidence and flexibility in novel and unfamiliar settings.  However, it is important to prepare the child for the novel situation and outline expectations and guidelines.

Meeting, Making, and Keeping Friends
   Making and keeping friends require many social skills, especially equity, sharing, and mutuality.  Most important, starting and nurturing a friendship is a process, not a product.  This process involves three stages:

  • Exploratory phase – Two people recognize they share interests, skills, or backgrounds
  • Trust stage – The two people have to have confidence in each other during this fragile phase.
  • Compatibility stage – Acceptance becomes solid and the friendship becomes one of mutually beneficial sharing.

Parents can help children in various role situations; playing board games is a particularly effective way to demonstrate negotiating, taking turns, following rules, sharing, having patience, strategizing, and being gracious in both victory and defeat.   Moreover, parents must take the time to talk with their children about this important topic.  In this respect, parents need to be supportive and nonjudgmental, creating a space in which the child feels safe to undertake that difficult step of sharing feelings.

Children with weak social skills often need assertiveness training:  Mr. Lavoie has conceived of the ASSERT method:
A   Attention:  Have the other person’s attention.
S   Soon, Short, Simple:  Be quick and succinct.
S   Specific:  Explain what act is of concern.
E   Effect:  Explain how the act effects you.
R   Reciprocity:  Define what roles both parties play.
T   Terms:  Arrive at an agreement as to the responsibilities of each party.

In every school, there are children who are popular; most of the others strive to be like them or at least be in their circle.  However, the largest group of children in school comprises those Mr. Lavoie call the controversial children.  These children have a group of friends but rarely go beyond that circle of peers with similar interests, neighborhoods, and activities.  Then there are the isolated children, those who are on the periphery of most social gatherings, and the rejected children, those spurned and bullied by others.  In a large survey, boys prefer those who participate in sports, though athletic prowess is not a requisite.  They value trust and responsibility.  They enjoy peers with similar interests and hobbies.  Sports and girls are popular topics of conversation; personal topics are not.  They do not like peers who are bossy, or aggressive.  Girls talk about school and confidential matters.  They value humor and friendliness, the last presenting a significant challenge to girls lacking social skills.  Girls place a high value on sensitivity and sincerity, among one another and in boys.

Positive and negative behaviors, whether actual or perceived as such, translate into reputation, either positive or negative.  Here, the guidance of parents and teachers can be especially valuable; these adults should show public acceptance toward these rejected children, highlighting their hidden talents.

The concept of friendship is often foreign to these children with social skills difficulties; in fact, they may have trouble understanding the definition of friendship and all it entails.  They need to start with comprehending the levels of friendship, starting with acquaintance, the casual relationship.  The second level is companion, those who share common interests.  The next level is genuine friendship, which involves reciprocity, the “give-and-take” of a balanced friendship.  The last level requires care and cultivation and avoiding pitfalls, such as being overly possessive, jealous, or demanding.  The assistance and support one demands must, in time, be “repaid.”  And a friendship must never be merely a source to acquire or borrow money or valued objects.  Among the challenges in genuine friendships are the following:

  • The ability to read a social situation
  • The ability to understand and complement the emotions of the other person
  • The ability to pace relationships, avoiding being overly aggressive
  • The ability to recall earlier experiences one should have learned from
  • The ability to predict the consequ3ences of social behavior
  • The ability to compensate for social miscues and admit to one’s mistakes, apologizing appropriately, and taking the necessary steps to correct the error and assure that it won’t recur.

Children with social-skills deficits will need the support and understanding of the adults in their lives.

Among adults who have been able to build successful lives, having overcome childhood challenges in their social lives.  The traits and attitudes by which these individuals have succeeded in achieving lives of stability and fulfillment include the following:

  • Self-awareness—an understanding of abilities, strengths, and weaknesses
  • Proactivity—the steps one takes to achieve social or vocational goals
  • Perseverance—being goal directed and not giving up in the face of obstacles.

These individuals had effective emotional coping strategies.  Even given all that, they had strong support systems.  They were able to cultivate these networks.  However, children with learning disabilities and social skills deficits will need such support systems to start them on this difficult, yet critical path.

It’s So Much Work to Be Your Friend: Part IV – Social Skills at School: Reading, ‘Riting, ‘Rithmetic, and Relationships

   In Part I, I gave an overview of a book that, despite its 10-year anniversary, is still highly relevant.  Kids Need Love When They Deserve It Least: A Review of It’s So Much Work to Be Your Friend, by Rick Lavoie.  As I concluded, “Social miscues become “teachable moments.”  Or, to quote, Mr. Lavoie, “Kids need love most when they deserve it least.”  This sentiment, as well as the use of the term friend in the title, reflect Mr. Lavoie’s deep compassion and understanding of children, seeing issues from the perspective of the child, for which he has earned fame and respect in his early PBS videos, How Difficult Can This Be?: The F.A.T. City Workshop and When the Chips Are Down.”   In Part II, I covered how Mr. Lavoie explores why these children with learning disabilities and accompanying social skills deficits “do the things they do.”   In Part III, I discussed social skills on the home front, especially dealing with siblings.

Learning disabilities often mask disabilities in managing social skills .

Learning disabilities often mask disabilities in managing social skills .

Bullies, Victims, and Spectators
   Children with social skills deficits often find themselves assuming one of these three roles involuntarily.  Bullying is any unwelcome physical, verbal, emotional, or sexual act committed against another.  Bullying includes humiliation, ostracizing, and humiliation.  It is imperative for parents to take such situations seriously while, at the same time, remaining calm.  Unless the bullying is very serious, however, parents are advised to coach their child to enable him or her to handle the situation through self-advocacy.  Victims are often shy and sensitive children, and they will need a great deal of encouragement.

In the case when the child with the learning is the bully, the behavior must be dealt with in a firm but understanding manner.  Why is the child acting out?  How can unmet needs be met?  Kindness, empathy, and good citizenship must be taught and reinforced.  Mr. Lavoie notes well, “the trait shared by both the bully and the victim is low self-esteem.”

Mastering the “Hidden Curriculum”
   The “Hidden Curriculum” comprises the unwritten and even unspoken rules of school; the challenge is to be able to read, perceive these rules that make up the classroom and school culture.  “Students with learning problems often lack the observational and conceptual skills to comprehend the Hidden Curriculum of their school,” the one everyone is expected to know.  The Hidden Curriculum includes the following:

  • The school building itself and where the rooms are located
  • The school schedule and procedures
  • The social scene, including “in” clothing, music, and language
  • Administrators and teachers and the habits and personalities of each.

Teacher-Pleasing Behaviors
   Many teachers are troubled by the failure of many children to practice basic manners, whether using polite language or abstaining from uttering what is best not said.  Among children with learning disabilities and social skills deficits, such behavior may be more prevalent, albeit unintended.  Teachers not familiar with the child may mistakenly take offense in such situations.  Says Mr. Lavoie, “For many students with learning problems, these skills are unrealistic and inconsistent.  The child’s noncompliance with the teacher’s instruction is viewed as willful and disrespectful, although it may be neither.”  These children will require instruction and periodic reinforcement.  As Mr. Lavoie reminds us, negative reinforcement stops behavior but positive reinforcement stops that behavior from recurring.  Just as a teacher should know the student, the student should know the teacher and what behaviors and habits are pleasing and displeasing to that teacher.