Contemporary Perspectives on Autism (December 2010)

27 11 2011

Laura Marshall
December 7, 2010
B. Delamater, JRL 308Z

ALBANY — Nov. 13 began like any other Saturday Joey Chaparro, 22, spends with his cousin Jonathan Estrada, 25. The twosome often visits local malls and libraries on weekends, sometimes taking in a matinee or going to a concert.

This particular day at Rotterdam Mall was interrupted by a group of teenagers taunting Jonathan, something that does not sit well with Chaparro.

“I just went up to them and asked if they had a problem,” he said. “I got in one of their faces and then they stopped laughing. They said ‘No… Sorry… There’s no problem.’”

The boys were right to adjust their attitudes, Chaparro- a recreational boxer who stands about five feet ten inches and 220 pounds- would be a sizeable opponent for one of today’s emo mallrats.

Jonathan, called John or Johnny by his family, has Asperger’s Syndrome, a high functioning form of autism. Someone with Asperger’s is very much able to love, learn, and live in the “mainstream” of society. They struggle with social interactions. An inability to perceive certain cues makes conversation difficult or awkward.

Asperger’s Syndrome is named for pediatrician Hans Asperger, who discovered and documented the condition while working at the University of Vienna in the early 1940s.

Working simultaneously at Johns Hopkins was Dr. Leo Kanner, a child/adolescent psychiatrist who is credited with coining the term “autism.”

These men are responsible for the foundation of research that fuels contemporary detection and treatment of the language delays and introversion observed in autistic patients.

The Autism Spectrum is not the finite scale it sounds. The term is used to summarize the expanding collection of traits and symptoms observed in individuals with autism. The more characteristics a child displays the lower they “fall” on the spectrum.

Presently it is estimated that one in 110 children in the United States have an Autism Spectrum Disorder, an increase of 440 percent in the last decade.

Quite often, the many facets of disability are generalized, something that is seemingly harmless but does little to help public understanding.

Mental retardation, as it was identified 30 years ago, is very much separate from autism or Down syndrome, which is a chromosomal condition.

The most distinguishable differences between someone with autism and intellectual impairment (formerly mental retardation) are language skills and IQ.

People who suffer from an ASD can have an average or above average IQ, but struggle to process verbal and auditory communications. A system of early intervention seeks to retrain these organic tendencies so that the person can functionally communicate- be it with picture symbols, sign language, or an automated speaking aid.

Someone who is intellectually impaired has the faculties to reach typical developmental milestones, but often fail to do so in the same time frame as their peers because cognitive impairment.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

“Jeff doesn’t necessarily look like he has a disability and most people aren’t really aware until they try to speak to him,” Brittany Bordas, 21, explains. “Over the summer when we were moving… [My roommate] Brandon went to shake his hand and introduce himself, not knowing there was anything different about him.”

Jeff is her uncle, Jeffrey Michael Rutbell. He is 40 years old, works a minimum wage job, and still lives at home.

In childhood, Jeffrey was diagnosed as having mental retardation. Recently, doctors, who monitor him for seizure activity, suggested that he has characteristics of autism.

While the two are separate conditions, they can and do overlap.

There has been no evidence of a genetic anomaly directly responsible for symptoms of autism, but a few related disorders have distinct physical manifestations, Fragile X and Angelman’s syndrome among them.

Even so, Jeff’s sister Karen Pugielli said that at one time or another “People would stare… We’ve been given strange looks as if we were aliens.”

Puglielli said that “It is my belief that- even though my dad was a wonderful provider and loves (his son) very much- he is somewhat embarrassed by public situations with Jeff. I can remember Jeff getting loud… when we were out and Dad would quickly hush him.”

Joe Chaparro understands. His cousin Johnny “talks to himself aloud in pubic which can turn a few heads.”

Their close-knit Puerto Rican family is very encouraging of John, who spends a good deal of his time at home, sketching comic strips and playing the piano, two self-taught, well- honed skills.

“I was about six or seven when I realized the differences between John and me… but since everyone in my family had accepted him, I had also. It was just normal.” Chaparro remembers.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Online journalist Gretchen Lee Bourquin wrote in a September column for Suite101 titled “Autism in the Spotlight: The Media’s Role in What We See,” that it is unreliable to consider fictional accounts of autism “true pictures” of the condition.

Sean Kittle, an office assistant at UAlbany’s Disability Resource Center, says that although he had seen movies like Disney’s “Tru Confessions” and Lifetime’s “Miracle Run” his comprehension of the “differently abled” was low.

“[This job] certainly has made me a lot more patient and understanding of what having a disability can do to someone, physically or socially. It has made me grateful for the body and mind that I have,” he said.

As student of media and documentary studies, Kittle absorbs Hollywood products with greater critical awareness than most.

“I think [filmmakers] try to be conscious in some cases when the goal… is to somehow educate or inform the public about struggles faced when people, especially adolescents are ‘differently abled.’”

He pointed out that often the best way to depict someone with a disability is to cast someone with the same- or similar- condition. Kittle cites characters on popular television shows “Secret Life of the American Teenager” and “Law & Order SVU” as having had the greatest impact on him as a viewer.

Kittle makes a good point. Viewers can better appreciate the presented scenario when the acting is less obvious. Films that are “based on a true story” or “inspired by true events” are usually successful because of the implied relatability.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

His name was William ¾ Bill for short.

In 1981, thanks to a TV movie starring Mickey Rooney, most of America learned the triumphant story of Bill Sackter.

He put a friendly, bearded, harmonica-playing face on a confusing and sometimes frightening condition.

Labeled as having “subnormal” intelligence and posing a “burden on society” at age seven, Bill spent 44 years in the Fairfield State School for the Feeble-Minded and Epileptic in Minnesota.

It was decided, decades later, that Sackter was in fact of almost normal learning capacity- although he was never taught to read, write, or even use a telephone. During the wave of “deinstitutionalization” in the 1950s and 60s, Bill was released from the institution and took odd jobs around Minnesota to support himself.

One of those jobs was as a dishwasher at the Minikahda Country Club. It was 1972 and Bill befriended a young couple- Barry and Beverly Morrow- at the employee Christmas Party.

Bill and Barry would be lifelong friends.

The TV special, titled ‘Bill,’ was better received than CBS executives ever could have hoped- Bill took the night and the hearts of America.

The documentary that inspired the Emmy-winning movie was finally completed in 2008, by Lane Wyrick. One of the interviewees in “A Friend Indeed” says “Bill was really a big leader in a movement, unbeknownst to him, of normalizing people’s reaction to people with disabilities.”

Arguably, ‘Bill’ ushered in the wave of blockbusters in the late 1980s and early 90s that centered on “challenged” characters.

Award winning films like “Rain Man,” “Forrest Gump,” and “What’s Eating Gilbert Grape?” helped to draw back the curtain of shame and trepidation associated with children and adults with special needs that existed just a generation ago.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Three years ago, New York Times entertainment columnist Caryn James declared “Autism has become to disorders what Africa is to social issues, the celebrity cause du jour.”

James points out that as the number of diagnoses increase so do the number of projects- films, TV shows, literature, charity events- depicting or promoting individuals with developmental disabilities.

Dozens of celebrities have taken the fight to raise awareness off-screen and off the field. Actress Holly Robinson-Peete, former NFL quarterbacks Doug Flutie and Dan Marino, and action-star Sylvester Stallone all have a son with an Autism Spectrum Disorder- as boys are four to five times more likely to have an ASD than girls.

Perhaps the most famous parent within the autism community is Jenny McCarthy- who has eclipsed her former fun, sexy girl-next-door image with one of a fiercely focused Mama. The former MTV host and B-list actress has chronicled her struggle with the diagnosis, treatment, and so-called recovery she has been through with her son Evan, now 8, in three best-selling books.

Every family copes with their situation differently because no two children or cases of autism are alike. There are countless approaches, outcomes, and consequences. As far from the days of forced institutionalization as the field has come, it is still very much a ‘trial and error’ process.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

The future of autism research and treatment is as gray as its history.

New York State Assemblyman Marc Molinaro hopes that a new piece of legislation will brighten the obscure tunnel.

Currently, Molinaro is backing bill number A-10372 sponsored by Rochester Democrat Joseph Morelle. The “Autism bill,” as it can be called, aims to “provide full coverage for the prevention, early detection, diagnosis and treatment of autism spectrum disorders.”

“Marc is one of those people who will help you no matter your problem, or the difficulty that he faces in trying to do so,” says Amanda Simmons warmly.

Simmons, 22, lives in Tivoli where Molinaro got his political start over a decade ago.

Molinaro, 35, is an endearing figure, regularly attending community functions ¾ tree lightings, parades, spaghetti dinners ¾ from Hudson to Fishkill. His constituents often will call him by his first name, because he is a trusted friend and neighbor.

Molinaro married registered nurse Christy Cocker in 1999. The couple welcomed daughter Abigail in 2004 and son Jack Henry in 2009.

Two years ago, Abigail began having seizures and was diagnosed with a neurological disorder.
“A loss of oxygen at birth caused minor damage to her brain,” Molinaro explains. “Her motor skills are slower, speech jumbled, attention span limited and she lives on the Autism Spectrum.”

The Molinaro’s have been candid in sharing their ordeal, bravely bringing attention to the pressures the families of special needs children face.

Lisa Pullaro, 49, is a former town councilwoman in Red Hook and friend of the Molinaro’s. Having spent time with Marc and Christy personally and professionally, Pullaro feels that “as a New York State Assemblyman, Marc gives a very public voice to those families dealing with similar situations and struggling to find and provide services, learning opportunities and successes to their children.”

Molinaro addressed the legislature last June, speaking thoughtfully, rationally, and with the same sense of urgency he dedicates to the dozen other causes on his desk.

“It would be easy to suggest that because of our actions premiums may increase. Sure they will- so too will they increase when we fight cancer and we fight AIDS and when we fight… Alzheimer’s. And so too should they be effected by caring for these kids as they grow older, and the reason that I rise today is not for personal benefit, although I will tell you any glimpse or glimmer of hope would be tremendous for us.”

Should the bill be signed into law by the Governor, it would provide a lifetime of coverage to those affected by autism. Necessary as the Centers for Disease Control reports the lifetime care costs for someone with an Autism Spectrum Disorder is around $3.2 million.

Molinaro is perpetually positive, but also necessarily realistic. He has said “My daughter will grow older and I hope she finds her way out of that place that autism brings her… but if she doesn’t I want to be sure that there is going to be coverage for her when my wife and I can’t provide it.”

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

What to do next is a daily question, frustration, obstacle for families with a disabled member.

Some are blinded by the label, unable to accept it- they forge ahead groping for normalcy. Some are impeded by the desire to know ‘why?’ They focus on the past, consumed with finding fault. Some grapple with the guilt of ‘doing everything right’ and it still not being enough.

Placing blame on vaccinations, diets, pollution, or prenatal exposure to artificial sweetener will not change your circumstances. Karen Pugielli ¾ who is Jeffrey’s legal “stand in” guardian ¾ believes facing the future would be easier if we were all able to find the joy and hope her brother has.

“Most of these individuals are genuine  they do not know hatred or competition in the world… They accept their situation and others for what they are.”




2 responses

30 11 2011
corry redd

I’m a writer and I would love to have people’s opinions on my work. Does anyone know any good blogging sites?. Twitter is not a blogging site and the only way people see your work on twitter is if they follow you. Twitter and Facebook are not answers that I am looking for. Thank you for your input..

3 12 2011
Geoffrey Donahue

I absolutely adore your blog! Check out my blog at Tester

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: