Autism and “being the other”

In a poignant article about his life as an “other,” Arturo Madrid talks about growing up in a small village in New Mexico, going on to graduate school at UCLA, and then teaching at Dartmouth College.  As a Mexican-American, he describes how it feels to be “the other.”  “Being the other means feeling different…It means going outside the game, outside the circle…being on the edges, on the margins, on the periphery.  Otherness means feeling excluded, closed out, precluded, even disdained and scorned.  It produces a sense of isolation, of apartness, of disconnectedness, of alienation.” (“Missing People and Others,” from Change)  Madrid talks about how his physical appearance, accent, and name sometimes confuse those around him.  School did not erase his sense of otherness, nor did the academic credentials he accumulated as he got older.

Often, it is hard for me to “read” Jimmy and know what he is feeling.  While I know he is aware of being different, how he feels about that is another thing?  For example, how does he feel when people stare at him for all the wrong reasons?  Years ago, how did he feel when his Sunday school class went to church and the pews were full, except for the space on either side of Jimmy?  Did he even notice that?  Growing up, how did he feel being ignored or excluded when it came time for kids in our neighborhood to send out invitations to their birthday parties or play a game of kickball?

Like many individuals with autism, Jimmy continues to experience otherness.  I feel it as well, especially when I am with him.  Interestingly, I think otherness has brought the two of us closer together.  Because he found it so difficult to find playmates as a child, Jimmy and I would spend hours upon hours together, when I got home from work each day and during weekends.

Jimmy’s otherness made me more aware and understanding of my students, many of whom were poor, black, stigmatized, stereotyped, and gifted.  To this day, Jimmy’s otherness makes me reevaluate my own biases and priorities.  And Jimmy’s otherness makes me thankful for those times when he is simply treated like someone who is your “average Joe.”

Recently, I read an article in the Washington Post titled, “The simple moment when my autistic son was treated like any other person.”  It was written by a mom who took her son, Nat, to Starbucks.  She ordered an ice coffee, and Nat ordered a chocolate chip cookie, his favorite.  Only Nat pronounced it, “chaw-chih coogie.”  Instead of being dumbfounded, the barista simply said to Nat, chocolate chip cookie?”  The barista did not flinch, nor did he look to Nat’s mom for help. The barista’s did not treat Nat as an other; rather, Nat was just another customer.  And that simple act made all the difference in the world.

Please note:  I am currently writing a book about my entire family and how we have grown over the years, in large part because of Jimmy.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my two daughters and wife as well as other friends of Jimmy are included throughout.  It is a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  The book will be published later this year.

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Sesame Street Becomes More Diverse

Almost one-half century ago, Sesame Street began its remarkable run.  By combining education and entertainment, it appealed to parents and children alike.  At the present, it is seen in more than 140 countries.  Even though it is considered a children’s show, it has never shied away from difficult, sensitive, and provocative subjects, such as race, death, and incarceration.

Earlier this month, a Muppet with autism joined the street gang.  Her name is Julia.  Julia’s puppeteer happens to be a mother of a child with autism.  Creating Julia was no easy feat; rather she came about after numerous consultations with autism organizations, families with children with autism, professors in the field of disability studies, and the true experts, those with autism.  Julia, like many with autism, flaps her hands when she gets excited, has difficulty making eye contact, and is both curious and smart.  Through this arduous process, which lasted years, the creators wanted to make sure they did not stereotype or sugarcoat children on the autism spectrum. Sesame Street. 

My family and I are big fans of the Muppets, as are many families in the autism community.  My favorite character is Ernie, perhaps because I see a little bit of his impishness in me.  Every time Jimmy and I go to the University of Maryland (UM) to catch a basketball or football game, we pay a visit to Jim Henson’s statue in front of the Student Union.  Henson, who is an alum of UM, became famous in the 60’s when he joined Sesame Street and created most of its famous characters.

Our family is indebted to Henson and Sesame Street, in large part because it played such a pivotal role in Jimmy’s development.  First, it supplemented the daily learning that took place in our home.  This included teaching him new words, how to count (in both Spanish and English), and the alphabet.  Moreover, Sesame Street gave us something to talk about, other than his preoccupation with what was happening in the days and months ahead.  For a very long time, it was the only TV show that actually held Jimmy’s attention.  He seemed to feel a connection with Sesame Street, partially due to the fact that it was funny, fast-paced, repetitive, and full of music.

Equally important, the values embedded in Sesame Street appeal to our family, values such as sharing, caring, respect, and cooperation.  In a world where the sheer number of children with autism is increasing significantly each day, awareness of autism needs to go hand in hand with understanding.  It has been our experience that awareness of autism is increasing, but there is a desperate need for more understanding.  In a world where children with autism and other disabilities are at a high risk for social isolation and bullying, children without autism need to understand that people like Jimmy are not all that different from them.  As a matter of fact, they are much more alike than they are different.  And like everyone else, they want and need friends, just like Julia.

Please note: I am currently writing a book about my entire family and how we have grown over the years, in large part because of Jimmy.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my two daughters and wife as well as other friends of Jimmy are included throughout.  It is a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  The book will be published later this year.

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Discrimination and National Autism Awareness Month

In a little over a week, we will begin “celebrating” National Autism Awareness Month.  We will highlight children who have made unbelievable progress in spite of their “limitations,” inclusion at schools and in the workplace, awareness and acceptance, and parents as well as caregivers who selflessly give of themselves so their children can have a better life.  One thing we won’t focus on is ableism, and in particular, institutional ableism.  Perhaps that is a mistake.

To my way of thinking, cultivating awareness of autism is central to understanding the totality of life experiences of the autism community.  We cannot simply celebrate the positive, and ignore the negative.  Ableism refers to prejudice and discrimination against people with disabilities.  When it is institutional, we are talking about social barriers that become embedded in society.  Let me offer a few examples of institutional ableism directed at children and adults with autism.

  1. There is a lack of good, reliable national-level data on how good (or bad) a job we are doing to meet the needs of our autistic population. Yes, the 2015 Life Course Outcomes Research program is one attempt to fill this void but large gaps remain.  A lack of data creates an unlevel playing field when it comes to funding, policy-making, and accountability.
  2. The high rate of unemployment for adults with autism is “criminal.” Many autistic adults can work and if given the right opportunity, become valued employees.  They are unemployed NOT because of their shortcomings; rather they are discriminated against because of what we assume about people with autism.
  3. Lessons about people with disabilities are largely absent across the curriculum in grades K-12 and higher education. Sure, we might have a reading, field trip, guest lecture, or some sort of celebration devoted to people with autism, but this type of inclusion can be worse than nothing.  Courses in the health, social, and biological sciences that focus on the totality of behavior should do just that, focus on everyone.
  4. It should not make “news” when churches, schools, and businesses embrace people with autism. In today’s world, this type of inclusion should be the norm, not the exception.
  5. For too many people, the word autism and deficiency are synonymous. For example, three distinguished professors (Earley, Ang, and Tan) refer to “cultural autism.”  In Developing Cultural Intelligence At Work, they use this term to describe anyone who might display “extreme forms of behavioral deficits or excesses” that are seen by others as “autistic-like.”  Unfortunately, the thinking of these professors is just the tip of the iceberg.  We live in a society where autism continues to be seen primarily as a scourge or a deficit that needs fixing.

To many of us, National Autism Month should feel good.  It should be about how far we have come; it should be about individuals surmounting obstacles and fulfilling their potential.  While sharing these stories is critically important, we cannot forget about the pervasive social obstacles that stand in our way.  As an author, professor, and sociologist with a lifelong interest in diversity, I constantly read about individual and institutional “isms,” including racism, sexism, classism, and anti-Semitism.  Rarely do I come across stories about ableism and specifically, information about systemic discrimination against those with autism.  That has to change.

Please note:  I am currently writing a book about my entire family and how we have grown over the years, in large part because of Jimmy.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my two daughters and wife as well as other friends of Jimmy are included throughout.  It is a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  The book will be published later this year.

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Autism, Bias, and the Media

The media has been taking a lot of criticism these days.  While some see the media as an ally of the American people, many others are more prone to see it as the enemy.  According to surveys, trust in the media is at an all-time low.

Back in the 1970s, trust in the media was much, much higher, especially the printed word.  Each night, my dad, a professor at New York University, would come home with at least four or five newspapers.  It seemed like he was always reading and looking for articles that related in some way to his teaching and writing in the fields of health, physical education, and recreation.  Among the papers in his briefcase were The Herald Tribune, The New York Post, The Daily News, and The New York Times.  In his eyes, the NYT was the least sensational and the most dependable.  Its slogan “all the news that’s fit to print” reinforced his thinking that this was a serious, just the facts kind of newspaper.  Since that time, a half-century ago, the NYT portrays itself in much the same way.  A recent ad for the NYT described it as “Just facts, no alternatives.”

For over a year, I have been writing a book about autism and my family.  As part of this process, I have buried myself in the literature on autism.  Not too long ago, I came across a study conducted by a professor and an undergraduate student at the University of Calgary in Alberta, Canada.  The study analyzed the NYT’s coverage of autism from 1973 (the first mention of autism) to 2012.  Specifically, the study’s authors looked for underlying themes in all of the NYT articles on autism during this span of almost four decades.  What they found is cause for concern:

  • Significantly more articles focused on the abilities autistic individuals lacked, rather than positive abilities they possessed.
  • Only 15% discussed how autism impacted others.
  • Two of the least discussed themes were discrimination against those with autism (6%) and their rights (2%).
  • Most of the themes revolved around a medical narrative, meaning a description of the individual, the ‘condition,’ and problems and solutions related to his or her autism.
  • Many articles addressed the prevalence of autism and “curing” autism.

How many of us depend on the media as a primary source of information about autism?  If we do, we are apt to develop a pretty distorted and biased view of people on the autism spectrum, their impact on others, and the worlds in which they live.

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Is Jimmy autistic, or does he have autism?

As I shared in my last blog, I am currently writing a book about my family.  The book deals with my son Jimmy, and the impact he has had on Pat and I and our family since conception.  Jimmy is an autistic, middle-aged man.  Or is he a middle-aged man who has autism?

Language is a powerful tool.  It can shape the way we think about ourselves and others.  Take identity-first and people-first language.  In my book, I have used people-first language.  For example, when I talk about Jimmy, I mention he has autism.  I refer to children with autism, or people on the autistic spectrum.  Why do I do this?  It is partly out of habit, and partly because I have been taught to accentuate the person rather than the disability.  In other words, Jimmy’s disability does not define him.  He is unique, and part of his uniqueness stems from his autism.

As I become more familiar with the literature on autism, I have grown increasingly aware of the growing use of identity-first language.  When applied to autism, we might, for example, refer to autistic people or my autistic son.  In many countries outside of the U.S., identity-first language is the norm.  Moreover, many in the autistic community prefer identity-first language.  Their reasoning is pretty straightforward.  Autism is not an appendage, rather it is an integral part who they are.  Autism “colors” their emotions, their interests and preferences, their communication, and their socialization.  One autistic person compared identity-first language to a person’s race, stating that we refer to Black and White people, not people who happen to share a common color or race.  Race is not something a person has, nor is it possible to separate a person from his or her race.

How important is this to you?  Does it matter?  Whichever one I pick, should I be consistent throughout the book?  Or should I use identity-first and people-first language interchangeably?  Your thoughts and insight would be greatly appreciated.

Thanks, and please leave your comments.

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Update

Due to surgery, I will not be resuming my blog until the month of December.   Should be ok by then.
Additionally, I wanted to share that for some time now, I have been writing a book about my son, Jimmy.  Jimmy, who has autism, has transformed my life and my family’s life.  Writing this book is something I have wanted to do for a long, long time.  It is due to come out sometime next year.  Prior to its release, I will fill you in on all of the details.  Thank you.

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Trump or Clinton:  My Son Jimmy Explains

Recently, Hillary Clinton described people with disabilities in the U.S. as a group who are “too often invisible, overlooked, and undervalued.”  Carol Glazer, President of the National Organization of Disability (NOD), said that this was the first time a presidential candidate had taken a whole campaign event to focus solely on people with disabilities.  That blew my mind.  While Glazer said that addressing the potential of this community is an economic imperative, I might add that it is also a political imperative.

In an increasingly tight presidential election such as the one we are witnessing at the present time, establishing a relationship with the disability community is a game changer.  Data from the Rutgers School of Management and Labor Relations show that more that 35 million Americans with disabilities are now eligible to vote.  This is a larger voting bloc that African Americans, or Latinos, or Asian Americans.  Add to this bloc caregivers, parents, and family members of people with disabilities.  To many of them, Trump’s and Clinton’s position on key economic, educational, social, and health issues for this population will carry a great deal of weight.  Clearly, people with disabilities could make a difference, especially in key states that will determine who becomes our next President.

My son is a middle-aged man who also happens to have autism.  But he is also a keen judge of character.  Once in a while, I ask Jimmy about current events and people in the news.  During the last few months, we have been talking about the upcoming presidential election; who is running, who might win, and the importance of voting; something Jimmy knows his mommy and daddy take very seriously.  Jimmy’s apparent interest in voting led me to ask him, “Would you like to vote?”  Often Jimmy is noncommittal or wishy washy when I ask him to make a choice.  Not this time.  His answer was an emphatic, “Yes!!”  Before we started planning all the details, I had to assure him that it would cost him nothing to vote.

Jimmy is 39 years-old, and for the first time this year, he will be exercising his right to vote for the President of the U.S.  He just became a registered voter.  As the election draws closer, we have discussed both Donald Trump and Hillary Clinton, what they stand for and their backgrounds.  Also, we have talked about why it is important to vote.  Recently, I contacted the Board of Elections and made plans to do a “run-through” ahead of time.  If I need to follow Jimmy into the voting booth, I will.  But Jimmy alone will decide which candidate he prefers.  After all, that is his right as an adult.

Not too long ago, I asked Jimmy what he would like to know about each candidate for President.  When he hesitated, I rephrased the question.  How should a person running for President of the United States act?  That triggered four interesting responses from Jimmy

  1. Kind
  2. Nice
  3. Polite
  4. Good behavior, not rude or mouthing off.

Two weeks ago, we continued this discussion over lunch at a local restaurant.  I posed the question, “What makes a president a good president?”  After giving it some thought, he simply said, “a good listener.”  When I complimented Jimmy on his excellent answer, he smiled from ear to ear, and so did I.

One of the so-called “core deficits” of autism is an inability to communicate.  Sometimes, I wonder about that.  When we talk, Jimmy has a way of zeroing in on the really important stuff.  He is one of the few people in this country who has not been affected by media coverage.  Like many voters, the debates, commentary by political analysts, and campaign speeches by the candidates have left me searching for more.  During our limited conversations, Jimmy has helped me sort out what really matters.  Thank you son, for sharing your insight and wisdom.

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Is the Olympic Ideal Dying?

More than sixty years ago, my father, Dr. Charles Bucher, wrote an article that appeared in The Reader’s Digest.  Dad was a Professor at New York University and the author of more than twenty textbooks on the subject of physical education and recreation.

In this article, he made the point that the Olympic ideal is dying.  He quotes Pierre de Coubertin, a French educator and founder of the International Olympic Committee.  Coubertin said, “The important thing is not winning, but taking part; the important thing in life is not conquering, but fighting well.”

Actually, this philosophy seems more closely aligned with what I observe each year at Special Olympics.  The motto of Special Olympics, which all athletes repeat at the start of competition is, “Let me win. But if I cannot win, let me be brave in the attempt.” While Special Olympics awards gold, silver, and bronze medals as well as ribbons for different athletic events and different abilities within each event, these awards symbolize that athletes have done their best, regardless of the challenges they might face.  Recently, the effort I saw being expended by a special Olympic athlete who was competing in the 25 yard freestyle race compared favorably to Michael Phelps and Katie Ledecky.  Even though this SO athlete had only one arm, he was using that arm to propel himself as best as he could, going round in circles as he slowly made his way to the other end of the pool.

My dad concluded the article by stating the emphasis in the Olympics should be on making friends, not making points.  He felt that given the founding principles of the Olympics, winning with grace and losing with grace was much more important than the medal count of an athlete or nation.

Is the Olympic ideal dying?  Consider the two runners who collided with each other in the women’s 5,000 meter run.  Their legs became entangled, whereupon they both fell down.  Even though one of the athletes was severely injured, they both stopped dead in their tracks, more concerned about each other than finishing the race.  Consider what an American fencer said after she became the first American athlete to compete in the Olympics wearing a hijab.  “I feel like it’s a blessing to be able to represent so many people who don’t have voices…”  The theme of taking part and doing your best was echoed by still another athlete, Kristin Armstrong.  After becoming the oldest woman to win gold in cycling, Armstrong said, “I have always loved that we were all born with the power to believe and to believe in ourselves.  You can set a goal and go accomplish anything…”  These positive examples grabbed the headlines, but there were many more.

Sure, there were athletes such as Hope Solo, the goalie for the American women’s soccer team who referred to the team that beat them as a “bunch of cowards,” and Ryan Lochte, an American medal-winning swimmer whose behavior after a night of carousing showed he has a lot of growing up to do.  Solo, Lochte, and numerous others who lost sight of the Olympic ideal would do well to volunteer each year at Special Olympics.  They might learn something about sportsmanship, priorities, and hopefully, themselves.

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Summer Camps:  Experiential Learning and Lifelong Lessons

Sometimes I wonder why my passions and interests have coalesced around diversity, race, and respect.  All I have to do is look back at how I spent my summers as a child.  First, let me say that I grew up in nearly an all-white middle class community in Armonk, New York (the site of IBM’s headquarters).  My dad was a professor at New York University (NYU) and my mom stayed home to raise me and my three siblings.

From the age of 1 to 10, I was privileged to attend NYU Camp on Lake Sebago in Suffern, New York.  At Lake Sebago, I had the run of the camp since my dad spent part of each day teaching students who attended the camp.  The students, majoring in Physical Education, Health, Recreation, and Dance, adopted me in a way.  I hung, ate, and played with them.  Amongst other things, I learned how to swim, play badminton, make a lanyard, and square dance.  NYU camp was very diverse, with a large contingent of both male and female international students.  Also, there was a sizable number of African-American students, many of them courtesy of the GI Bill.  Looking back, NYU broadened and diversified my world.

At 11 years of age, I started attending Camp Dudley, the oldest camp for boys in the U.S.  At the time, I did not know just how fortunate I was to spend 8 weeks of my summer at this beautiful, serene camp on Lake Champlain in Westport, New York.  I do now.  Recently, I visited Camp Dudley with my wife.  While there, I got to “go back in time” and talk with a number of campers.  The neat thing about Dudley is that it is far from a sports camp; rather, there is something for everyone.  The highlight of my visit was delivering a sermon at their Sunday Chapel Service.

My sermon focused on Dudley’s motto, “The Other Fellow First.”  As I preached to about 500 campers and guests, I shared how the Dudley motto has stuck with me all these years.  Specifically, when I think about the Dudley motto, there are three parts that were ingrained in me each and every day:

Part One:  Put the other fellow or other person first.  This might mean listening before speaking, doing a favor for a camper you didn’t know, or simply being humble.

Part Two:  It did NOT matter if the other fellow happened to be of a different race, color, culture, social class, sexuality, age, or ability.  You put the other fellow first, period.  That was it; no exceptions.

Part Three:  Dudley has a strong spiritual component, with hymn sings on Sunday night, vespers every other night of the week, and chapel talks at the start of each day.  It was in this context that we learned it was not enough to simply put the other fellow first, and just tolerate him.  Rather, we needed to actually put him first in our hearts.  That meant showing respect and being there for him.

In recent weeks, much is being made of the importance of conversations about race and respect for each other, and how we can all do better.  I agree, and yet, I believe that experience is our best teacher.  And many of those experiences that teach us something valuable about diverse cultures, religions, and races can be traced to our childhood.  In my case, NYU Camp and Camp Dudley taught me lifelong lessons about diversity and inclusion at a time when they were the last things on my mind.

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ANSWERS Who’s Racist: Trump and/or Duke

Note:  Trump officially secured the Republican nomination for President last night, and David Duke, a Trump supporter, recently announced plans to run for Congress in the state of Louisiana.

In my last blog, I posed the question:  Which of these quotes came from Duke?  And which ones came from Trump?

The source of each quote is identified below:

David or Donald?__DAVID_____________ “As for America and the rest of the European world, I want to live in a nation that reflects my traditions and values, and I do not want my people to become a minority in the nations my own forefathers built.”

David or Donald?__DAVID_____________ “Immigration along with nonwhite birthrates will make white people a minority totally vulnerable to the political, social, and economic will of Mexicans, Puerto Ricans, and Orientals.”

David or Donald?__DAVID_____________ “I don’t consider myself a racist, I don’t hate other peoples, but I certainly want to preserve my own.  And I think that’s true of all people.”

David or Donald?__DONALD____________ “I love Muslims.  I think they’re great people.”

David or Donald?__DONALD___________ “An ‘extremely credible source’ has called my office and told me that Barack Obama’s birth certificate is a fraud.”

David or Donald?__DONALD___________ “When Mexico sends its people, they’re not sending the best…they’re sending people that have lots of problems, and they’re bringing those problems.”

David or Donald?___DAVID____________ “More than 95 percent of both legal and illegal immigration into the U.S. is non-white.  Because of the way immigration law is structured, the highest-skilled nations on earth – those of Europe – are allowed only a tiny percentage of immigrants, while the third world nations such as Mexico are dumping their chaff onto American shores at the highest rate in history.”

David or Donald?___DONALD__________ “I think Islam hates us…There’s tremendous hatred.”

David or Donald?___DONALD__________ “I have a great relationship with the Blacks…I’ve always had a great relationship with the Blacks.”

David or Donald?__DONALD___________ “A well-educated Black has a tremendous advantage over a well-educated white in terms of the job market.  I think sometimes a black may think they don’t have an advantage…If I were starting off today, I would love to be a well-educated Black…”

David or Donald?___DAVID____________ “…affirmative action is a very nice term for racial discrimination against better-qualified white people in jobs, employment, promotions and scholarships, and college admittance.”

David or Donald?__DAVID_____________ “I think the basic culture of this country (U.S.) is European and Christian and I think if we lose that, we lost America.”

Is David Duke a racist?  What about Donald Trump?  You be the judge.

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