Asperger's Syndrome and the Journey Taken by One Family to Understand It

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Recently, it was reported that Asperger's syndrome was dropped from the latest edition of the psychiatrist's "bible," the Diagnostic and Statistical Manual of Mental Disorders. according to The American Psychiatric Association (APA) .

The familiar "Asperger's," along with some similar disorders, have been lumped together under autism spectrum disorder, "to help more accurately and consistently diagnose children with autism," the APA said in a statement.

Other syndromes include "hoarding disorder" or "disruptive mood dysregulation disorder (DMDD)," identified by severe temper tantrums.

Journalist Ron Fournier knows a lot of about Asperger’s syndrome. His son has it, but it took many years for the family to identify it and understand the challenges the family would face.

Writer James Fallows in The Atlantic recently wrote   that Fournier of  the National Journal “has written a remarkable long article that I promise you will not regret taking the time to read. It is not what most readers would have expected from Fournier, who is best known for very hard-headed political coverage at NJ and before that for many years with AP. Instead it is a personal, unsparing, often beautiful account of family struggle featuring an improbable cast of main characters: Fournier and his wife Lori; their son Tyler, who has Asperger's syndrome; plus Bill Clinton and George W. Bush.”

“For instance, Fournier offers this moment, after an extended father-and-son road trip across the country he has taken with Tyler as a bonding exercise. He asks Tyler what he got from the experience:

"All I got out of it was time with you," he says, laughing. "No offense." I tell Tyler there's got to be a better way to end our story than saying we spent time together. "This isn't Twilight," he says, referring to the film saga he wouldn't be caught dead watching. "This is you and me. Just write that we like to spend time together. That's a big deal for a kid like me."

“It would be a big deal for me--if I believed him. The fact is, he'd rather be alone, and I can accept that now, because the aversion to social contact is part of who Tyler is. But he is telling me what he knows I want to hear, and that's progress for my empathy-challenged Aspie.

Fournier cites a television character named Max Braverman  from the TV show, “Parenthood,”  who helped the family better understand Asperger’s syndrome.

In the article, Fournier writes, “Max Braverman is a sweet, wickedly smart boy. He is also rude, obsessed with insects, and prone to meltdowns. His parents ricochet between exasperation, guilt, and fear. Max has Asperger’s syndrome, a form of autism that hinders social interaction. Aspies lack the ability to read emotional clues such as facial expressions and have difficulty navigating conversations. They tend to fixate on interests and repetitive behaviors.

“Max is a character in the NBC drama "Parenthood," and when Lori (Fournier’s wife) saw an episode, she recognized Tyler in Max—and us in his parents. “Tyler might be autistic,” she told me when he was 12. “Watch the show.” I did, sitting at my computer until 3 a.m. suddenly, it seemed clear what was wrong with our little boy. I wept and convulsed with fear. Also, relief: Max is far worse off than Tyler, and now we might at least know what we were dealing with.

Fournier’s job as a political reporter led to his  relationships with two former Presidents, Bush and Clinton. On a road trip with his son, Fournier visited to the two men. He describes the interaction Tyler had with the Presidents this way:

I saw through both presidents a successful future for Tyler—in Clinton, big possibilities for a boy with a sharp mind and rough edges. In Bush, Tyler’s gift of humor as a means to find confidence in himself and connections with others. I learned that while Tyler was not my idealized son, he was the ideal one. In the Oval Office, years ago, I thought Bush had ordered me to “love that boy” in spite of his idiosyncrasies. Now, I realize, I love my son because of them.”

Read the rest of the article, "How Two Presidents Helped Me Deal With Love, Guilt, and Fatherhood."

A recent posting on Psychforums.com posted by a person with Asperger’s describes some of the challenges faced:

“I have always felt like I was on the outside of things. Finally, after breaking down about it a few times, my therapist told me that I have Asperger's. She first started noticing it over a year before, when she met me, because of my stiff body posture and sometimes awkward body positioning (like when I go from sitting to standing). Also, she noticed that I have a blank stare and am socially awkward. I went to visit my old therapist, who I have known since I had just turned 14, and she said she had wondered whether I did. I told one of my best friends, who I have known for 11 years, and he disagreed but that he had thought about it before too (he noticed that I do make eye contact, which a lot of people with Asperger's don't do).

“I have a soft voice, and I have difficulty making it louder. In the past, when I have been really excited about something, I say things loudly. Both things have been commented upon, but especially the quiet thing. I actually stopped talking in public places for about a year during either grade. I had selective mutism, and I don't know it this connects to Asperger's a lot. I have very little insight into why I stopped talking. I had a lot of OCD rituals around trying to be quiet, too.”

Read the rest of his poignant posting at Psychforums.com.

The severity of communication and behavioral deficits, and the degree of disability, is variable in those affected by ASD.  Some individuals with ASD are severely disabled and require very substantial support for basic activities of daily living.  Asperger syndrome is considered by many to be the mildest form of ASD and is synonymous with the most highly functioning individuals with ASD.

The prevalence of AS is not well established.  It is often not recognized before age 5 or 6 because language development is normal.  Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.  Experts estimate that as many as 1 in 88 children age 8 will have an autism spectrum disorder.

Studies of children with Asperger syndrome suggest that their problems with socialization and communication continue into adulthood.  Some of these children develop additional psychiatric symptoms and disorders in adolescence and adulthood.

Children with Asperger syndrome may have speech marked by a lack of rhythm, an odd inflection, or a monotone pitch.  They often lack the ability to modulate the volume of their voice to match their surroundings.  For example, they may have to be reminded to talk softly every time they enter a library or a movie theatre. 

Unlike the severe withdrawal from the rest of the world that is characteristic of autism, children with Asperger syndrome are isolated because of their poor social skills and narrow interests.  Children with the disorder will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it, but the conversation may seem like a random collection of facts or statistics, with no point or conclusion.   They may approach other people, but make normal conversation difficult by eccentric behaviors or by wanting only to talk about their singular interest. 

Many children with AS are highly active in early childhood, but some may not reach milestones as early as other children regarding motor skills such as pedaling a bike, catching a ball, or climbing outdoor play equipment.   They are often awkward and poorly coordinated with a walk that can appear either stilted or bouncy. 

Some children with AS may develop anxiety or depression in young adulthood.  Other conditions that often co-exist with Asperger syndrome are Attention Deficit Hyperactivity Disorder (ADHD), tic disorders (such as Tourette syndrome), depression, anxiety disorders, and Obsessive Compulsive Disorder (OCD).

Visit your local library for more information on this subject.

 
Look Me in the Eye: My Life with Asperger’s
John Elder Robison,  (2007).
If one looked at only Robison’s impish sense of humor (he once ordered a blow-up sex doll to be delivered to his junior-high-school teacher—at school), or his success as a classic-car restorer, it might be impossible to believe he has the high-functioning form of autism spectrum disorder called Asperger’s syndrome.  It is easy to recognize these telltale traits today, but Robison went undiagnosed until he was 40. In the 1960s, he was variously labeled lazy, weird, and, worse, sociopathic. Consequently, his childhood memories too often read like a kid’s worst nightmares. Not only did his parents fail to understand the root of his socialization problems but they were also virtually as dysfunctional as the pair Augusten Burroughs portrays in Running with Scissors (2002). ’Nough said? Not nearly. Robison’s memoir is must reading for its unblinking (as only an Aspergian can) glimpse into the life of a person who had to wait decades for the medical community to catch up with him.— REVIEW. First published September 1, 2007 (Booklist).Donna Chavez


Elijah’s Cup: A Family’s Journey into Culture and Community of High-Functioning Autism and Asperger’s Syndrome

Valerie Paradiz, (2002).
Elijah, Valerie and Ben Paradiz’s only child, had some developmental problems in his early years, which were diagnosed as epilepsy. Yet the pressures of caring for the boy gradually drove Valerie and Ben apart, and they finally separated, which increased the demands on Valerie. Still, no one mentioned autism until live-in sitter Sharron Loree and Elijah’s third pediatric neurologist both suggested it. Sharron, herself diagnosed with Asperger’s, was able to meet Elijah on common ground.  — REVIEW. First published March 1, 2002 (Booklist).William Beatty

Finding Ben: A Mother’s Journey through the Maze of Asperger’s
 Barbara LaSalle, (2003).
With all her worries when she gave birth to Benjamin, kindergarten teacher LaSalle was typical. She wanted to be a perfect mother to a perfect—read normal—child. But Ben was anything but normal. While LaSalle misguidedly persisted in trying to be the perfect mother, the real, imperfect Ben got lost in a blind alley of misdiagnosis, mistaken counsel, and, finally, imprisonment. It was 25 years before he was correctly diagnosed with Asperger’s syndrome, a high-functioning form of autism. — REVIEW. First published April 1, 2003 (Booklist).
  Donna Chavez

 

For younger readers:

Temple Grandin: How the Girl Who Loved Cows Embraced Autism and Changed the World
Sy Montgomery, (2012).
Apr. 2012. Grades 4-8.
It isn’t easy to describe how the mind of someone with autism works, but Montgomery’s biography effectively breaks the disorder down for a younger audience while introducing the extraordinary life of activist Temple Grandin. When Grandin was a child, she was withdrawn and unable to communicate. In 1950, at the age of three, she received an unheard-of diagnosis: autism. Grandin’s mind thinks visually, in pictures, much the way it is believed that animals think. As such, she is empathetic to their needs and has advocated for the humane treatment of livestock by redesigning cattle facilities to be cruelty-free. In the early chapters, Montgomery’s narrative jumps back and forth in time with disjointed results, but it smoothes out as the book progresses. Grandin’s story presents autism as a gift, and her “I like the way I think” attitude will be inspiring to many. With informational sidebars, photos, and blueprints for humane animal-processing facilities—as well as extensive back matter, including “Temple’s Advice for Kids on the Spectrum” and resources—this title will be useful for educators and kids in discussing the prevalent, often misunderstood disorder.REVIEW. First published March 15, 2012 (Booklist).

— Ann Kelley

 

 

 

Images:

two sides to every story By Norma Desmond

My son needs the label of Asperger’s Syndrome so that people stop using inappropriate ones. There are many gifts that come with this condition. Difficulties arise from an inability of ‘normal’ society to understand or accommodate the way his brain works.

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