Celebrating Halloween at Asylums: What Messages Do We Send?

Posted on October 29, 2019 by Dr. Bucher

“Come to the Asylum Ball,” and join us for a “costume contest and party.”  Pictured along with this ad are people in straitjackets, pictures of signs including Psych Ward, Morgue, Amputation, and Genetics, bottles of various medications, and a warning that reads “the Lunatics have taken over the Asylum.”  While this Asylum Ball took place at the Trans-Allegheny Lunatic Asylum in West Virginia, it’s not the only historical institution that seeks to make money by inviting people to celebrate Halloween this way.  For example, there are Halloween parties at other old institutions that used to be hospitals and asylums for those labelled insane for one reason or another.

Pennhurst Asylum offers a themed haunted house and bills itself as “Pennsylvania’s Most Terrifying Haunted Attraction.”  As late as the 1980s, employees of this facility were arrested for beating and encouraging fights among the patients.  Former patients were instrumental in filing a lawsuit which brought these horrors to light.

As the father of a son with autism, it’s not far-fetched to imagine that someone like my son would have been institutionalized in an asylum had he been born a century earlier.  Years ago, autistic people were commonly labelled imbeciles, insane, morons, idiots or even possessed by the devil.

In 1969, as a student at Colgate University, I chose to do fieldwork as part of an education course.  From a list provided by my professor, I chose to work nearby in an institution that used to be called the New York State Lunatic Asylum at Utica, New York.  Unlike other students at this site, I chose to work in the Geriatric Ward.  It’s pains me when I think back to this experience.

The place where I did my field work resembled a big old government building, with huge columns at the entrance.   Inside, it had the feel of a cold, impersonal, and sterile institution.  All the interior walls were painted white, the patients wore white gowns, and the metal cabinets in each room were all locked and white.  When I entered, it seemed like there were always patients in line to receive their allotment of medications.  Cigarette smoke filled the air.  The men were not clean-shaven, most appeared to be heavily sedated and wandered around aimlessly.  And they smoked cigarettes right down to the filter. A few played board games and I remember one ping-pong table.   There was very, very little social interaction among the patients and staff.  Each week, I spent a good deal of time removing cigarettes from patients’ hands so they wouldn’t burn their fingers.

In my new book, A Mommy, A Daddy, Two Sisters, and A Jimmy:  Autism and the Difference it Makes, I write about this experience in more detail and how it provided me with perspective.  Little did I know at the time how this experience would continue to shape my thinking and feelings toward the disabled over the years.

My field work and everyday experiences as a father have helped me to step outside of myself and my own world.  In my book, Diversity Consciousness, I talk about this skill and how it affords us the ability to recognize, understand, and value diversity in all its colors, shapes and sizes.  Now, I bristle at the thought of people attending Halloween parties at so-called asylums.  If I hear words such as retard or moron, I make a point of speaking out.  And in my teaching and talks on diversity, I try to provide students and others with opportunities to try to put themselves in someone else’s shoes, including my son’s and others who are on the margins of society.

 

Links to more from Dr. Bucher:

Dr. Bucher’s Website for his book A MOMMY, A DADDY, TWO SISTERS AND A JIMMY:  AUTISM AND THE DIFFERENCE IT MAKES

Buy A MOMMY, A DADDY, TWO SISTERS AND A JIMMY:  AUTISM AND THE DIFFERENCE IT MAKES at Amazon.com

Dr. Bucher’s Facebook page on Autism

Dr. Bucher’s Facebook page on Diversity Consciousness

 

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An Abundance of Talent Waiting to be Tapped

Posted on October 7, 2019 by Dr. Bucher

With the just announced ultra-low U.S. unemployment rate (3.5%), it’s easy to assume that everyone is benefitting.  Unfortunately, that’s not the case.  Unemployment for those with disabilities, and particularly adults with autism, is astronomically high.  Some estimates peg the rate as close to 80 or 90%.  For many, they’ve been unemployed their entire lives.  And a college education doesn’t really seem to make that much of a difference.

Years ago, when our autistic son Jimmy was a teen, my wife organized a support group for parents of special needs children.  While members of this group had children with a wide range of disabilities, they shared a common goal for each of their children.  That goal was summarized by Fran Allen.  Fran was once asked a question about her son Greg.  “What do you want your son to do when he grows up?” Her simple but eloquent response, “Pay taxes.”  In other words, Fran wanted her son to be a contributing member of society.

According to U. S. Secretary of Labor, “Individuals with disabilities add significant talent and value to our workforce” and “offer employers diverse perspectives on how to tackle challenges and achieve success.”  So far so good.  But it’s also true that being employed, earning a paycheck, and being able to contribute to society motivates us and for many, is an integral part of why we get up each morning.  Many of those on the spectrum have the talent and abilities to do a great job if they are given the opportunity.

October is National Disability Employment Awareness Month.  It’s theme for 2019 is “The Right Talent, Right Now”.  Employing people with disabilities is not just the right thing to do; its’s the smart thing to do.

Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout.  It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  Both the print and Kindle version of this book are now available.  Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://www.facebook.com/RichardDBucherPh.D).

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

 

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Inclusion is Harder, Not Easier

Posted on September 4, 2019 by Dr. Bucher

Recently, I was reading a new book by the mother of an adult son with autism.  On the back cover, she describes how reading her book will change us.  First, she says, it will “convince you inclusion is easier than you think.”  She then goes on to talk about how she “scoured the country” to find individuals and programs that support her son.

Yes, I agree that inclusion is critically important and yes, inclusion matters.  But as a sociologist and the father of an adult son with autism, I’ve found that inclusion, whether we’re talking about disability (or some other dimension of diversity), is typically even harder than most of us think; for numerous reasons:

  1. The U.S. is an individualistic society. When it comes to challenges, we tend to focus on what we do and can do as individuals.  Yet, much of the exclusion in this country is bigger and broader than individuals.   Yes, there are some programs that are tailor made for autistic individuals but they are pretty rare.  The author, for example, uses the example of Specialisterne for good reason.  But this is one company, and it is cited over and over again in the literature on inclusion and autism.  There is a reason for that.  There aren’t many companies like Specialisterne.
  1. Often, people are under the assumption they’re inclusive when they’re not. This may be due to something called unconscious or implicit bias.  While such bias remains hidden, its effects are all too real.  For instance, I might not be aware of the ways in which I exclude my son from activities that he might very well enjoy.  One good example is voting.  For the longest time, I assumed he wasn’t interested and/or wasn’t able.  At 35 years of age, he voted for the first time, for President of the U.S.  Yes, it took some preparation on our part, but he got an awful lot out of it.
  1. We often fail to see or recognize certain forms of discrimination that send children or adults with autism the message “they don’t belong.” Instead of “in-your -face” treatment that isolates and denigrates, discrimination of this nature can be more structural, subtle, and persistent.   Think of workplace discrimination that accounts for the unbelievably high rate of unemployment amongst those with disabilities.  The fact that parents feel a need to create a business or a group home in their communities in order to provide autistic adults with meaningful employment and a place to live shows a glaring lack of inclusion throughout society.
  1. Overcoming bias and exclusion requires a strong commitment by individuals, groups and communities over time. Autistic individuals and groups of individuals need help.   Real, inclusive change is not simply an interpersonal, short-term, feel-good process.

Many of our images of inclusiveness are shaped by the media.  And there are some wonderful stories out there.  But the inclusion of disabled children and adults is a significant lifelong challenge for many.  We need help!

 

Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout.  It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  Both the print and Kindle version of this book are now available.  Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://www.facebook.com/RichardDBucherPh.D).

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

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Disabled Students and the Suspension Gap

Posted on July 29, 2019 by Dr. Bucher

Last week, the U.S. Commission on Civil Rights issued a report on school discipline, and the role of race and disability in student suspensions.  The report found that students with disabilities are about twice as likely to be suspended when compared to students without disabilities.   While one of the Commissioners made the statement that students’ disabilities make them more prone to misbehavior, we need to dig much deeper to make sense of the Commission’s findings.  What follows are ten likely reasons for the significant gap noted in this report.

  1. Old-fashioned in-your-face discrimination by teachers and staff toward students with disabilities. My bet is that many teachers are unaware that they do in fact discriminate for no good reason.   And unfortunately, many disabled students find it difficult to advocate for themselves and if they do, school personnel may not listen.
  2. Structural discrimination. For instance, a school or classroom might not be appropriate for students with disabilities.
  3. Lack of classroom support. What is the ration of disabled students to teachers and teacher aides?  Given the numbers, is this a ratio that makes student success unlikely?
  4. Lack of well-trained teachers and aides, meaning they don’t have the awareness, understanding, and skills they absolutely need.
  5. Unrealistic rules and expectations. For example, how about the expectation that our son Jimmy, who has autism, would sit in his seat for an hour, much less a half-hour?
  6. Through no fault of their own, some disabled students don’t know the rules or can’t understand and follow them.  For instance, if a teacher repeatedly told Jimmy to get in a circle, he would repeatedly get in the middle of the circle.
  7. Disabled students may get into trouble because of other students. For instance, some are taken advantage of and bullied into bad behaviors.  A young boy with an intellectual disability might pull down his pants at school because someone told him to do it.  The child, while breaking the rules, might do this out of fear, for acceptance, or simply because he doesn’t know any better.
  8. Having a child with a disability in one’s classroom can be challenging and even exhausting.  Suspension might be the easy way out for a teacher who’s “had it.”
  9. Teachers may feel unable to control a child with a disability because they don’t know what to do.
  10. In certain situations, a disabled student’s behavior can be frightening to staff, particularly if they don’t know enough about the nature of the disability.

Closing the discipline gap between those with and without disabilities will not be easy by any means.  It will take considerable resources, training, parental involvement, and strong leadership.

 

Please note: I recently finished a book that applies the latest research on autism to our family’s journey over more than four decades.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout.  It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  Both the print and Kindle version of this book are now available.  Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://www.facebook.com/RichardDBucherPh.D).

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

 

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Parenting, Autism, and The Difference Compassion Makes

Posted on June 10, 2019 by Dr. Bucher

“An Uncommon Compassion” is the title of a chapter in my most recent book, A Mommy, A Daddy, Two Sisters, and a Jimmy:  Autism and the Difference It Makes.  While discussing our family dynamics, I cite a quote from my oldest daughter Katie.  “Growing up with my brother Jimmy, I discovered more and more about myself and other people.  When someone so different is so close to you, you develop an uncommon compassion for others.”

According to research on autism, Katie’s experiences are not unique.  About a week ago, I sat down with Professor Regina Conti and her wonderful family while I attended my Colgate Reunion in upstate New York.  Dr. Conti is a Professor of Psychology at Colgate University.  Over breakfast, we talked about our families, the challenges and joys of special needs parenting, and the support system that our children so desperately need.

In her study, “Compassionate Parenting as a Key to Satisfaction, Efficacy, and Meaning Among Mothers of Children with Autism,” Dr. Conti found that when parents of children with autism find themselves becoming more compassionate and empathetic, they in turn become more tuned into their child’s needs and challenges.  Seeing the world, or at least trying to see the world from their autistic child’s perspective allows them to find more meaning in life and truly value their autistic child’s strengths.

Ever since he was born, I’ve had a close relationship with my son Jimmy.  But now I think I’m more apt to question my own thinking and assumptions when it comes to Jimmy and other members of my family.  Why?  Three years of familiarizing myself with cutting-edge research on autism provided me with newfound understanding and empathy. For instance, I look at my daughters and my son differently now.  Jimmy’s behaviors, such as rapid-fire questions that go on and on, seemingly irrational fears, and an inability to feel intense pain have become much more understandable.  Moreover, I am better able to sense his needs and react appropriately and lovingly.  As far as my daughters are concerned, I think I have a greater appreciation for the emotional trauma they experienced when they were growing up, and their concerns and priorities as far as Jimmy’s future is concerned.

Compassionate parenting can be extremely difficult for fathers and mothers, especially when they are stressed out, as many parents of autistic children are.  And sometimes, the act of showing compassion can be tiring over time.  People in the medical profession sometimes call this “compassion fatigue.”  But the outcomes of compassionate parenting show it’s worth the effort, and not only for the child’s development and self-esteem.  In her study, Dr. Conti found that compassionate parents were more apt to report greater meaning and personal satisfaction with their lives, in spite of all that’s asked of them on a daily basis.

 

Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout.  It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  Both the print and Kindle version of this book are now available.  Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://www.facebook.com/RichardDBucherPh.D).

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

 

 

 

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Autism:  Isolation and Loneliness?

Posted on May 2, 2019 by Dr. Bucher

“Sometimes I’m grateful for his autism.  That may sound like a terrible thing to say, but in some ways I think, I hope it shields him.”  Mom continues, “He doesn’t seem to notice that he doesn’t get invited to birthday parties anymore.  She goes on to talk about how her son eats lunch alone in the school cafeteria.  “It’s more heartbreaking to me than it seems to be to him.”

I identify with some of what that this mother has to say about her autistic son, in particular the isolation, and questions about how much her son really notices.  My autistic son Jimmy can be hard to read as well.  More often than not, I can only guess what he’s thinking or feeling about his lack of social interaction with the outside world.  Does he care?  Is he lonely?

Living in an isolated “autistic bubble” is not at all unusual for autistic children and adults.  Certainly, the extreme isolation of autistic people is well documented by research.  For instance, one recent study found that 40% of young autistic adults never saw friends; and half never were invited to activities.  In another new study, parents reported their autistic children were sometimes or often left out of activities by other children.  Some research has linked isolation to the fact that autistic children may be viewed as “weird or odd.”

Why the bubble?  For some parents, it’s almost an instinctual response.  They know how mean and cruel the world can be to those who seem oddly different.  Rather than a loving push to experience new situations and meet new people, parents retreat and protect.  Certainly, part of the challenge, according to Paul Shattuck, one of the authors of the aforementioned studies, is the difficulty autistic people have “navigating the terrain of friendships and social interaction.”  But it’s important to remember this difficulty is a two-way street.  Those of us who are not autistic must learn to do a better job reaching out, drawing out, listening, and nurturing relationships with those whose minds may work differently but nevertheless are anxious to connect both verbally and nonverbally.

Loneliness comes in an assortment of shapes and sizes.  For example, there’s emotional loneliness, social loneliness, and collective loneliness, meaning the feeling of not being valued by one’s community.  And researchers now know that random human contact is not enough; rather the nature of human contact and who it’s with are both critically important.

In all honesty, there are times when Jimmy would much rather be by himself, like me and many others.  But as with many other autistic adults, he has a healthy social appetite.   When our family is not around, does he feel lonely?  Does he have the opportunity to interact with a wide variety of people, and ask the questions that build up inside of him?  Even after some forty-two years of raising my son, I’m still not sure.

 

Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout.  It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  Both the print and Kindle version of this book are now available.  Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://aJimmy.com).

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

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Autism Awareness Month – Looking Forward

Posted on March 29, 2019 by Dr. Bucher

Since Autism Awareness Month got its start in 1970, we’ve come a long way.  At the same time, we’ve got a long way to go.  As a father of a middle-aged son with autism, I’m looking forward to the day when:

  • Kind random acts directed toward autistic people do not make national news; rather they become part of the social fabric of everyday life.
  • People with autism can flap their hands or rock back and forth in public without onlookers blinking an eye.
  • Autism is not viewed or defined as a deficiency, a disorder, or a social problem.
  • Everybody, regardless of how their brain works, is considered neurodiverse and uniquely human.
  • The media accurately portrays just how broad and diverse the spectrum really is.
  • There’s no longer a need for Autism Awareness Month.
  • Instead of simply trying to cure or eliminate autism, people throughout the world put more time, energy and funding into improving the lives of autistic people of all ages.
  • More and more parents realize that having an autistic child is not the end of the world.
  • The “cliff” young adults encounter at age 21, when services seemingly evaporate, is a thing of the past.
  • The word autistic brings children to mind, and young adults, middle-aged adults, and senior citizens.

What are you looking forward to?

Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout.  It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  Both the print and Kindle version of this book are now available.  Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://aJimmy.com).

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

 

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Stimming, Basketball, and Acceptance

Posted on February 26, 2019 by Dr. Bucher

This past week, I finished coaching my Upward Basketball team for the second year, with my 42 year-old son Jimmy as manager.  Our church-affiliated team, the Blazers, was made up of seven first- and second-grade boys.  While Jimmy cannot attend our practices because of his work schedule, he helps me any way he can on game days.  He is part of our pre-game ritual and post-game activities.  Before games, one of his absolute favorite things to do is line up with our team in the hallway outside the gym.  When players and coaches are introduced one at a time, they run through a “wall” of crepe paper and then high five the family members and friends who have formed two long lines leading to the court.  It’s lots of fun and the kids love it.  So does Jimmy.

A couple of weeks ago, Jimmy lined up with his team before the game on one side of the hallway, and the team we were playing lined up on the other side.  When Jimmy gets excited, he flaps his hands and hums pretty loudly, something we call stimming in the autism community.  The Blazers have seen him do this before, during, and after games, so it’s no big deal.  Also, I talked a bit about Jimmy at one of our early practices so they understand that Jimmy flaps his hands when he gets excited or is happy.  It’s kind of like the Blazers getting pumped and giving each other high-fives.

As Jimmy flapped away, I happened to look at the opposing team.  Nearly all of them were staring at Jimmy wondering what in the world he was doing.  This went on for a couple of minutes until we entered the gym.  I’m used to this reaction.  As a matter of fact, Jimmy and I had just returned from a family wedding in Florida.  Walking through the airport terminal toward our gate, Jimmy could hardly contain his excitement.  Stimming and smiling, I felt like there was a bright spotlight turned on my son.  Passengers were fixated on him.  He’s never let on that he’s aware of the stares or how it makes him feel.  Even after all these years, I know I still feel uncomfortable and annoyed, especially when those doing the staring are adults.

As I’ve gotten older, I’ve learned to appreciate Jimmy’s stimming.  After all, this is his unique way of communicating and he seems to enjoy it immensely.  He’s learned not to do it at work and during prayers at church.  And once others like the Blazers and their parents get to know him, they pretty much ignore his stimming but appreciate his enthusiasm for life.  Hopefully, as autism becomes more commonplace and less hidden from the public eye, the public’s perception of hand-flapping will change.  In time, hopefully staring will gradually give way to indifference or maybe even smiling as well as understanding.

Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout.  It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  Both the print and Kindle version of this book are now available.  Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://aJimmy.com).

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

 

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Sibs, Autism, and Resilience

Posted on December 13, 2018 by Dr. Bucher

Life’s ups and downs have a way of transforming us.  Supreme Court Justice Sonia Sotomayor’s autobiography, My Beloved World, provides us with insight into the challenges of her childhood, which wasn’t easy by any stretch of the imagination.  She writes, “There are uses to adversity, and they don’t reveal themselves until tested.  Whether it’s serious illness, financial hardship, or the simple constraint of parents who speak limited English, difficulty can tap unexpected strengths.  It doesn’t always of course: I’ve seen life beat people down until they can’t get up.  But I have never had to face anything that could overwhelm the native optimism and stubborn perseverance I was blessed with.”

Unlike many of us, Justice Sotomayor doesn’t see hardships as things that must be overcome; rather, she sees hardships as things that help us grow.  She goes on to say that growing up in poverty, her diabetes, and the death of her father when she was only eight taught her resilience.

In my newly published book, A Mommy, A Daddy, Two Sisters, and a Jimmy: Autism and the Difference It Makes, my two daughters share life-changing lessons they learned growing up with their autistic brother.  For instance, my oldest daughter Katie shares, “I have a bond with Jimmy that gives me this sense of closeness with people who are seen as different.  I feel that with this compassion, I can have an effect on others’ lives.  I went through a lot of emotional pain when we were young.  Living through that, I know that no matter how tough life seems, you can get through it.”

Unlike my wife Pat, who remembers thinking that life was a just a “bowl of cherries” during her childhood, Katie and Suzy remember something quite different.  Early on, they were exposed to conflict, stress, and the pain that comes with being seen as fundamentally different.  Both Jimmy’s sisters have developed resiliency over the years; in that they’ve learned to bounce back from adversity. But at times it can take a while to bounce back; months, years, even decades.  Their family, friends, and faith have all played a critical role in helping them make meaning out of adversity.  Rather than simply focus on the negative, they’ve learned to focus more on the potential for individual growth.

Research on resilience teaches us some valuable lessons about life.

  1. Resilience requires skills that can be taught.
  2. Resilience can change over time.
  3. How we perceive a traumatic or stressful life experiences can be more important than the life experience itself.

As adults, my daughters continue to work on maintaining a positive outlook.  This means trying to understand that circumstances alone do not dictate our attitudes or how we react; rather, we do.  It’s an extremely difficult lesson to learn, remember, and put into practice.

 

Please note: I just finished a book that applies the latest research on autism to our family’s journey over more than four decades.  My son Jimmy is a middle-aged adult on the autism spectrum.  The voices and perspectives of my son, my wife and two daughters as well as friends and professionals are included throughout.  It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time.  Both the print and Kindle version of this book are now available.  Profits will go to Linwood Center, an internationally recognized program whose mission is to create extraordinary lives for children and adults with autism (see https://aJimmy.com).

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

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