A Debt of Gratitude

Bernie Rimland , along with his wife Gloria, have a special place in my heart.  Twelve years ago this month he died.  Mr. Rimland was an ordinary parent who lived an extraordinary life.  More than sixty years ago, his son Mark Rimland was born.  When his wife Gloria gave birth to Mark, Bernie sensed that something was drastically wrong.  Mark looked fine, but he made a habit of screaming, wandering around, and did not want to be held or cuddled.  Their pediatrician could not make sense of Mark’s symptoms, despite his 35 years practicing medicine.

After her son turned two, Gloria remembered a psychology text she had read in college.  The author discussed children who did not act like other children; rather they acted differently, like Mark.  Her husband went out to their garage and started digging through a pile of dusty old boxes.  There he found the text; Mark had something called autism.

Rimland, who had recently earned his Ph.D. from Penn State University in the field of psychology, proceeded to find out everything he could about autism.  At that time, knowledge about autism was in its infancy and parents were frustrated by doctors who didn’t know or didn’t care.  Dr. Rimland had found his passion.

In 1964, Dr. Rimland published Infantile Autism.  Sales of his book soared, and parents throughout the world wrote him, sharing their suggestions and seeking his advice on how best to help their children.  To help with his work, many parents completed the checklist found in the back of his book and mailed it back to him.  Soon, Dr. Rimland and a small group of parents established the Autism Society of America to spread information about the treatment of autism.

Rimland was not afraid to question medical doctors and Ph.D.’s.  He was not content to simply study autism research; rather, he critiqued it and found fault with much of the data.  His book offered new theories and research.  He questioned the idea that autism is a disease.  Unlike many professionals of his era, he did not blame the parents of autistic children; he knew better.  Up until the wee hours of the night, he responded to parents’ email and discussed treatments on the phone.  He even found time to be a technical advisor for the 1988 movie, Rain Man.

To quote Dr. Stephen Edelson, Director of the Autism Research Institute, Dr. Rimland brought “hope to an entire world of children once dismissed as hopeless.”  He also disproved the ridiculous but widely held theory that parents’ shortcomings and child-rearing practices were responsible for their children’s autism.  Lastly, he and Gloria raised an amazing son, who is now in his 60’s.  Besides being an accomplished writer and artist, Mark likes listening to music, has a great sense of humor, and loves to get out and visit friends.

 

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 in the not too distant future.

Visit https://www.facebook.com/DiversityConsciousness/ to read current articles and view insightful videos relative to Diversity Consciousness.

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Where Are the Fathers of Autistic Children?

For the last two years, I have been immersing myself in the research on autism.  One area of interest to me is what research can tell us about the role of fathers in raising children with autism.  A few observations:

  1. Researchers tend to gloss over or totally ignore the contributions of dads.  This is a big mistake.  While a great deal of research has been done on moms, the same can’t be said for dads.  This bias is rooted in a society that still equates parenting with mothering, even though gender roles are changing considerably.
  2. As researchers slowly show a greater inclination to examine dads, they are becoming more aware of the many ways in which all family members are interconnected. For instance, there have been numerous studies that examine stress and depression as they relate to mothers of children on the autism spectrum.  Recent data shows stress and depression taking its toll on dads as well.   To no one’s surprise, a couple’s ability to cope with stress is significantly related to marital satisfaction.  In turn, satisfaction with one’s marriage impacts a dad’s relationship with his autistic child.  And now, research is finally examining the critical importance of relationships involving siblings and extended families.
  3. In addition to doing wonders for mom’s mental health, fathers who are actively involved in raising their autistic child make a huge difference in their child’s development. For instance, studies show that autistic children’s ability to learn words and communicate is very much tied to the involvement of dads .  To illustrate, I loved reading to Jimmy, and there were stories we knew by heart.  Altering the words to the story and getting him to giggle was one of the things I enjoyed most.  Over time, I could clearly see the difference I was making in Jimmy’s development – emotionally, educationally, and physically.
  4. Research shows that men and women tend to have different strengths, and take on different roles . As an example, I was much more apt to engage in physical, rough-and-tumble play with Jimmy.  I used to constantly throw him high up in the air, so high that his head once bumped the ceiling.  Also, I would carry him on my shoulders and behind my back, punch him playfully, and wrestle, both inside and outside.  We spent hours walking, swinging on the swing set in our backyard and at the playground, creating our own obstacle course, and playing soccer.  Something I began to notice is that all of this exercise helped Jimmy deal with his anxiety, and it had a calming effect on me as well.  Perhaps most importantly, it was FUN for both of us.  Regardless of the skills he was learning, this was our time together and we looked forward to it each day of the week.
  5. Certainly, the involvement of fathers is not all positive, nor is it necessarily easy for the family as a whole. When both parents take an active role in child care, studies indicate that conflict can result.  For instance, my wife and I are very passionate.  We both feel very strongly about the right and wrong way to raise a child.  Fortunately, we are in agreement most of the time.  When we are not, we have had to come up with strategies to find some common ground.  I think the most difficult challenge was communicating while we were also dealing with the built-up sheer exhaustion of caring for our children, and particularly our son.

Regardless of a father’s experiences, we need to study it and learn from it.  How can we help fathers, some of whom have more than one child on the spectrum, learn to cope better, get the support they absolutely need, and become more aware of the positive difference they are making?  Dads of all races, cultural backgrounds, perspectives, and lifestyles need to be studied.  Otherwise, we are missing out on all of their wonderful talents and insights.

 

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 in the not too distant future.

Visit https://www.facebook.com/DiversityConsciousness/ to read current articles and view insightful videos relative to Diversity Consciousness.

 

 

 

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Forest and DT: Bringing Out the Best in Each Other

Forest, Mississippi is a small southern town with a population around 6,000.  One researcher, using Census data and science to rank the most economically and ethnically diverse cities in the state of Mississippi, put Forest on top.  People of many different faiths can be found in Forest.  Average family income is about $26,000, with almost a quarter of the population below the poverty line.  Forest’s residents are roughly 40% white, 50% African-American, and 18% Latino.  Nearly 13% of its residents are 65 years of age or older

Everybody in Forest pretty much knows one another, and Don is no exception.  Donald Gray Triplett, or “DT” is one of Forest’s senior citizens.  He also happens to be the first person ever diagnosed with autism.  As a retiree, he still enjoys reading his morning newspaper, driving his 2000 Caddy around town, and playing golf.  And he loves to travel in the U.S. and abroad.

His remarkable life is discussed in some detail in the book, In a Different Key: The Story of Autism. With the exception of a short period of time in a nearby institution, where he was sent by doctors at 3 years of age, DT has spent his entire life in Forest.  The book’s authors, John Donvan and Caren Zucker, traveled to DT’s home town and spent some time with him.  They describe the culture of Forest as predictable, slow-paced, tranquil, and safe.

DT’s mom played a critical role in his development.  She constantly sought to find out more about her son’s condition and what she could do to help him.  She helped him learn to communicate, connect with others, and take care of himself.  DT attended the local high school.  Then, once he graduated from nearby Millsaps College with a bachelor’s degree in French, DT returned to Forest to work at the local bank.

In spite of overwhelming odds, DT ‘s life story is one of adjustment and hope.  Unlike most autistic adults, DT lives on his own.  One neighbor had this to say about DT, “I don’t think any of us has ever thought of him as challenged.  He is simply unique, just like the rest of us who live here.”  What a refreshing perspective!!!

DT and his inner circle of friends and family deserve a great deal of credit for his success.  But so does Forest.  To quote Donvan, “If we can bottle whatever Forest, Mississippi did over 80 years of his lifetime, and export it to the other communities, the world would be a better place for everybody (my italics).”  I couldn’t agree more.

 

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.

Visit https://www.facebook.com/DiversityConsciousness/ to read current articles and view insightful videos relative to Diversity Consciousness.

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Siblings and Autism:  A Key Piece of the Puzzle

Harriet’s younger brother, Archie, was diagnosed as insane at a young age.  Because of that diagnosis, Archie would spend the vast majority of his life in cold, sterile state-run institutions.  Institutional staff considered Archie untrainable.  He was housed with adults, and did not have any friends to speak of.  Harriet visited him regularly, took him home for dinner, and took advantage of Archie’s passion to tidy up her home.

Many years later, when Harriet read an article about autism, it clicked.  Thinking Archie was in fact autistic, she had him re-evaluated.  Harriet’s suspicions were confirmed.  Archie was sent to a group home, where he spent the last years of his life.  He had his own room along with a semi-private bath.  Archie developed hobbies, took trips, and learned to take care of himself.  Through it all, Harriet continued her visits and never gave up hope.

Archie died at the age of 83 in 1997.  Had it not been for his sister, his life would have been drastically different.  In that respect, Archie is like a lot of autistic individuals whose siblings play a major role in their lives.  Often, that role comes with considerable responsibility and tough choices, especially later in life.

“…I know I’ll have to marry someone who will help me when it comes time to care for my brother.  I don’t know the options.”  “I would watch him but there is no way I can do it alone.  I need people to help me.”  “Having my brother living with me would put a tremendous strain on my relationship with my spouse.”  “Now I wonder if I could handle giving birth to a disabled child, knowing what I know now.”

These concerns, almost verbatim, come from different siblings who have a brother or sister with autism.  Often, as siblings grow older, they find themselves worrying about the future; and what will happen when their parents’ health fails and they pass on.  When Pat and I were raising Jimmy, this was the last thing on our minds.  But as we become senior citizens, we find ourselves thinking more and more about how Jimmy’s sisters, Katie and Suzy, will be impacted “down the road.”  Right now, we are working on overcoming our reluctance to talk about this, and putting plans in place.

Actually, we have been planning Jimmy’s future for some time now.  In addition to Pat and me, there are three other key components to this plan.  When we are no longer able to oversee this process, his sisters will step in.  In no uncertain terms, Katie and Suzy have told us they want to do this, together.  Secondly is Linwood.  Linwood operates a nearby group home.  Since he was 21, Jimmy has lived there with two other autistic men, and live-in staff.  Simply put, it is Jimmy’s home away from home, and I don’t see this changing anytime soon.  The last big component of this plan is Jimmy himself.  Pat and I, and Suzy and Katie constantly visit Jimmy, check up on him, and seek his input.  He is more than capable of expressing his needs and wants to us; with others it can sometimes be a challenge.  Any decision about Jimmy’s future rests in large part with Jimmy.

“What happens when we die?” is not a question that keeps Pat and me up at night.  When we leave this earth, we know that Jimmy will be fine.     Katie and Suzy have made that very clear; with Jimmy’s input, of course.

 

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.

Visit https://www.facebook.com/DiversityConsciousness/ to read current articles and view insightful videos relative to Diversity Consciousness.

 

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Autism and Jimmy’s Loud Hands

  1. Difficulty making eye contact
  2. Difficulty dealing with changes in routine
  3. Hand-flapping and other repetitive behaviors
  4. Meltdowns or tantrums

According to findings from one recent study, these autistic symptoms and behaviors are primarily responsible for the social exclusion experienced by individuals with autism and their families.  Given this data, many professionals direct their attention and interventions to changing the behaviors of autistic people.  However, as a sociologist and a father, I have also learned to look at attitudinal barriers and social norms in the larger society.  And at myself.

Hand-flapping is a good example of a repetitive behavior.  We know that people with autism communicate in a variety of ways.  Yet, many assume that because someone is non-verbal, they do not speak.  Jimmy, like many autistic people, is verbal, but he also communicates by flapping his hands.  He tends to do this when he feels passionate about something and gets excited.  For instance, when we take him to church with us, he will start waving his hands and slapping them together when he hears a song that moves him.

Recently, I read a book titled Loud Hands.  The book, written by over a dozen autistic adults from diverse backgrounds, defines loud hands as speaking and doing what comes naturally.  It means not letting social norms stifle one’s behaviors.

When Jimmy flaps his hands in church, I used to be concerned about the noise and movements coming from my son.  I was more concerned with Jimmy being a distraction, than with Jimmy praising the Lord and just being comfortable.  When he started flapping, I would “tolerate” it for a while, but if it continued, I would gently rest my hands on his shoulder, letting him know that this behavior was not acceptable.

Loud Hands helped me realize that the issue is not Jimmy’s hands; rather, it is my hang-up with showing “proper” decorum in church, whatever that means.  Indeed, our pastors (present and former), who are part of the book I am now writing about Jimmy and his family, told me how much they enjoy hearing from Jimmy during the service.  Now, when Jimmy feels the music and expresses himself as only he can do, I smile and enjoy all that he brings to worship.

Yes, Jimmy has developed the ability to quiet his loud hands while he works at Walmart.  But at home or church or on our long walks together, he enjoys communicating with his hands.  And it sounds beautiful.

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.

Visit https://www.facebook.com/DiversityConsciousness/ to read current articles and view insightful videos relative to Diversity Consciousness.

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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.

Visit https://www.facebook.com/DiversityConsciousness/ to read current articles and view insightful videos relative to Diversity Consciousness.

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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.

Visit https://www.facebook.com/DiversityConsciousness/ to read current articles and view insightful videos relative to Diversity Consciousness.

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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.

Go to Diversity Consciousness on Facebook for videos and posts about current issues involving diversity and inclusion.

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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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