TACA: IACC Rescinds Vaccine Research Initiatives
Alison Singer Feeds the Hungry Lie – Twice

Struggling to Communicate: Autism and the Media

Media Managing Editor's note: Ms. Lay is a student at NYU. She wrote this paper on how autism is portrayed in the media.  I thought it was an interesting topic for a college student to address.  Note, there's one part of my quote that she did not include - I'll asterisk it at the end of the post.  I'm running this not so WE can grade her - she already did quite well on the paper, but to show that autism is getting attention for having been misrepresented in the media. Rebecca might be a future journalist - maybe she'll land at the NY Times, and remember me and my kids. And yours too.  Thanks, Rebecca.

By Rebecca Lay

Most Americans could not tell you that autism is the fastest-growing developmental disability in the United States, with approximately one in 150 children affected.  In a country where recent presidential candidate John McCain confuses Autism with Down syndrome,  this isn’t surprising. Autism spectrum disorder, which includes autistic disorders on a mild to severe scale as well as Asperger syndrome, is characterized by “developmental disabilities that cause substantial impairments in social interaction and communication and the presence of unusual behaviors and interests.”  Although coverage of the Autism Community has gotten better over the past decade, the media “grossly underreports the challenges of autism.”  This results in a lack of full understanding among the general population, which creates a vicious cycle of misinformation, leading to intolerance. 
 
A conflict in the motivation of the media contributes to the lack of accurate information about autism. Major newspapers and news outlets depend on readership and viewers to lure their advertisers. The goal of educating the public on autism becomes entangled with the media’s need to focus on what the public wants to hear. “You can’t educate or correct the misconceptions if the media’s interest is only in stories that will buy time from advertisers.  The bottom line is always there in terms of stories that the media will cover,”  says Julie Azuma, the mother of a child who was diagnosed with autism and the founder of Different Roads to Learning, a website that provides educational aids that support the Autism Community.  


 
Kim Stagliano, the mother of three children diagnosed with autism and the managing editor of Age of Autism, a daily web newspaper focused on the Autism Community, agrees, noting that the media “tends to focus either on tragedy or feel good stories.”  Autism spectrum disorders are relatively mysterious in that they affect individuals in many different ways and on a wide scale. Additionally, there is no known definitive cause or cure for autism spectrum disorders.  This epidemic of a disease that baffles the medical community does not present an easy feel good story with a happy ending. “Autism…frightens people, with no documented cause so they avoid it,”  says Kim Stagliano. (*See my note below.)
 
But when the media doesn’t avoid the topic, it tends to sensationalize the stories for its viewers. This can be witnessed in a simple online video search on CNN for the keyword “autism.” The top video results, sorted by “most relevance,” include a video named “First look at lost home,” in which “a family with an autistic child, losing their home to a wildfire presents special challenges,” “Karate therapy,” in which “karate has become a sort of therapy for one autistic boy,” and “Father and son adrift at sea,” in which “Dr. Sanjay Gupta reports on how a father and his son who has autism survived treading water at sea for 14 hours.”  “The media is only interested in a bleeding heart story or a miracle,” Azuma says.  The video “When Jerry Met Mary” tells the story of two highly functioning middle-aged autistic adults who met at a support group and fell in love. Jerry describes himself as “almost normal” and calls his relationship with Mary a “miracle.” Both are also genius savants, Jerry an expert mathematician and Mary and musical and artistic genius.  
 
Occasionally the media presents a child who suffers from severe complications due to autism, but manages to balance out the story with an extreme gift and message of hope. For example, 60 Minutes presents “Catching Up With Rex,” a segment about an autistic child who, although severely impaired, is a prodigious savant in music. “Rex was born blind with brain damage so severe, his mother Kathleen was told he may never walk, talk, or do much of anything,” Lesley Stahl narrates at the beginning of the video. The segment continues to show Rex’s musical genius and his “new friends” at a special school for savants, who also play music with prodigal talent. Despite all odds, he walks and talks and even reads. The last clip shows Lesley Stahl improvising a duet with Rex, both of them laughing and smiling.  
 
However, Julie Azuma notes, “both types of children [autistic and autistic with savant syndrome] have caused a rate of divorce of 75% in families with autistic children.”  No family touched by autism is saved from grief and hardship. Savant Syndrome, a condition in which an individual’s handicaps and developmental disabilities are contrasted with extreme genius in a certain skill, is exceptionally rare. “There are fewer than 100 reported cases of prodigious savants in the world literature” and today “probably fewer than 25 prodigious savants living.”  Despite the statistics, the media tends highlight these rare cases, or as Kim Stagliano says, “They tend to show the ‘tricks’... swishes on the basketball court…math geniuses.”  
 
When the media doesn’t sensationalize stories about autistic individuals, it inaccurately characterizes them, sometimes contributing to existing stereotypes and common misconceptions in society. Although the autism spectrum disorders “can vary---from gifted to severely challenged,”  the media mostly shows high functioning individuals. “The media tends to represent children and young adults who have language and some skills when there are many children who don’t have language and have very difficult behaviors,” Azuma says, referring to behaviors that include “head banging, aggressive behavior, feces issues, screaming and lack of self control.”  For parents of children who are on the severe end of the autism spectrum, these behaviors represent what Stagliano refers to as “the day-to-day grind,”  something that is rarely shown in media coverage. 
 
An online search on MSNBC with the keyword “autism,” is all too telling. In a sampling of the first ten video results, sorted by relevance, and without counting duplicates, only one video actually shows at home everyday footage of an autistic child and her family. None of the ten videos show severe symptoms or behavior associated with autism.  “The media films for an hour to get a 10 second clip that doesn’t define anything close to what families of children diagnosed with autism live through each day. [They do not define] what the house looks like, where there’s plexiglass instead of glass, where the walls are either reinforced or padded, where the bathroom has picture grams all over, where there is a visual schedule by the door, where there’s a room or space just to work with the child,” says Azuma.  
 
This presentation of high functioning autistic individuals, while avoiding those with more severe symptoms only allows readers and viewers to glaze the surface of the problems associated with these behaviors. Since there are usually no obvious physical symptoms of the disease, children with autism can look to the untrained eye as though they were simply poorly disciplined normally functioning children. “That type of interview [with a high functioning autistic individual] would lead people to think that autism isn’t so hard,” says Kim Stagliano adding that viewers would think to themselves, “‘Look at that person, she can talk, think and do the same things as my daughter or sister.’”
 
It is misconceptions such as these that fuel public intolerance, which then spreads to others. On July 16th, 2008, Michael Savage raised concerns among the Autism Community when he argued on his radio talk show The Savage Nation that in “99 percent of the cases [of autism spectrum disorder]…they don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’” The Savage Nation reaches millions of listeners, with “more than 350 stations nationally.”  Members of the Autism Community were concerned with the possible effects of Savage’s statements. “Autism experts say Savage's statements threaten to alter the public's understanding of the disorder,”  noted ABC News. 
 
In his recent book “Why We Suck: A Feel-Good Guide to Staying Fat, Loud, Lazy and Stupid,” comedian Denis Leary also helps fuel incorrect perceptions about autism. "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically…I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both,”  he writes. Historically, autism was thought to be the result of poor parenting. After first identifying the disorder in 1943, psychiatrist Dr. Leo Kanner theorized that emotionally cold mothers were to blame. The term “refrigerator mother” was coined.  Although it is now accepted among the medical community that there is no known definite cause or cure for the disorder,  this spread of inaccurate information reinforces wrongly directed blame in the public’s minds today. “I’ve been in those shoes.  I have been called a bad or permissive parent because of the behaviors of my own child.” Azuma says. 
Although the public has come a long way in accepting those with mental disorders, people with autism are still seen and presented in the media as unequal members of society. Some reporters even refer to them with sub-human connotations. In a movie review of “The Black Balloon,” the story of how an “autistic son reveals family shame and strength,” New York Times writer Stephen Holden refers to Charlie, the autistic character, as “feral” and a “desperate wild animal.”  In a Nightline Special Autism Report called “Love is Complicated Even for the Autistic,” reporter John Donvan walks down a long road with Paul, an adult who suffers from an autistic spectrum disorder. As he questions Paul about his unrequited love for an older woman, a voiceover says, “Who knew that a man with autism could suffer the pain of a broken heart.” Throughout the video, he continues questioning, “Does it even make sense to say that an autistic man is in love? Do autistic people love the same way as you and I do?”  Donvan’s confusion about whether an autistic person has regular human emotion reflects a misconception and reinforces it. As Time Magazine notes, “Other classic symptoms--a lack of emotion, an inability to love--can now be largely dismissed as artifacts of impaired communication.”  “They are people!” Stagliano says when asked about this misconception, “Total myth. Not knowing how to express it doesn't mean it's not there!  They aren't psychopaths, devoid of emotion.” 
 
The future of coverage on autism depends on communication. The Autism Community needs to be accurately and more thoroughly represented. The vicious cycle witnessed with Michael Savage and Denis Leary’s public comments must be broken so that levels of tolerance and acceptance of the Autism Community can continue to grow. Julie Azuma shows hope for the future in her belief that “the attitude towards the autism community is changing and more people are understanding and grateful that they have mainstream children.”  However, media coverage must help facilitate this change through educating the public. Only when the media decides to take an accurate look at the Autism Community from the perspective of its actual members, and not one that is filtered through the eyes of its viewers will this positive change occur. 

“There are few people in the media that understand autism. It’s impossible to have a grip on the disorder unless you live it,”  says Azuma. More in-depth coverage of everyday life in a household affected by autism without censoring more severe behaviors and symptoms would help viewers at least begin to “have a grip.” As Julie Azuma strives to communicate with her website Different Roads to Learning, the public needs “to let parents know that we are in total understanding of the lives they live and the issues that they face.”  Along with this in-depth coverage, a more representative sampling needs to be taken from the full spectrum of the autism spectrum disorders. Kim Stagliano believes that not only should more interviews be held with the actual individuals diagnosed within the autism spectrum, but with “people at all levels of impairment.”  With the website Age of Autism, Stagliano attempts to “expose the myths and outright lies” and “educate the public about the reality of autism from inside.” 
 
The Autism Community hopes that with more education and awareness, acceptance and support will follow. “Autistic people as well as people with any disability should gain acceptance in the community, the same as those who were involved in the civil rights, gay rights and feminists movements in the 60’s,” says Azuma.  After the public begins to fully recognize these struggles, surely they will be able to accept those who are affected by this mysterious disease and support them. Although psychologist Peter Gerhardt has seen a positive change in research, education, and tolerance in the past decade, he still strongly reaffirms that “we’re settling for less than mediocre. Let’s start settling for good for a change, and then I’ll argue towards excellence.”

Rebecca Lay is a student a NYU.

* Here was my complete answer to Rebecca's question: Plus, autism is highly controversial - is the increase just better diagnosis or is there an actual epidemic?  (yes, there is.)   Autism also frightens people, with no documented cause (many of us think it's an environmental insult to the system and suspect vaccines as a possible trigger) so they avoid it. It's controversial and can implicate pharma companies. Pharma pays media's bills. 'nuff said.

Comments

sandra

I AM 58 AND TRYING TO COME TO TERMS WITH MY SELF IMPOSED END TO MY 18 YEAR RELATIONSHIP WITH A MAN WHOSE AUTISTIC TRAITS BECAME MORE APARENT AS HE HIT MIDDLE AGE AND MY POST MENOPAUSE.THere was generalintolerance of each other.His bullying to do exactly what he needed.Little empathy ,greater need for sex and no empathy for my inability to give it.It may on the surface sound like any breakdown of a relationship but I felt and experienced his autism to my great detriment.Ihad to leave him before harm ensued.Is there any documental evidence of increased ASD IN MID LIFE MEN/ IE CONNECTION TO TESTOSTERONE LEVELS. Researching this will enable me to come to terms with the break up.He would not engage at counsellling.Has now found another caring type like me.She I believe has a healthy sex drive which will help keep his symptoms at bay.So Ican walk away its not my problem, but I mourn what we had before he became so angry and frustrated.

stephen wilkerson

i read your article and as much as it impressed me, it saddened me just as much. the media portrays hope amongst all the violence and cruelty in the world today. i do however, think that you are right when you say that many of us see autism as a joke, something to be made fun of at every turn. however you focused on american media, not world media. i have lived in europe and the middle east and the media serves a different purpose, perhaps we should look to the rest of the world, because to be honest, americans sometimes digust me in their ways

Tammy Lessick

My biggest fear is that when my son is grown up and I am no longer around, who is going to take care of him? I would like to see the press do stories about caring for autistic adults now and in the future. Especially since the number of diagnosed children are growing each year and theses children, our children, will become adults.

Thomas Stewart

Well done, I am really behind this. Keep up the great work. Big Shout Out To You!

http://www.Autism-LaidBare.com

MadDad

but at times I wish Autism were highly contagious.

They'd just add a new vaccine for it

Maureen

Rebecca,
Thank you!
I believe this is a topic so important for people in your age group, because in ten years you will be the next wave of parents having children. My children are rare because they already know they are poor methylators and don't make enough glutatianone to detox the world they live in because we have tested all of our children not just our affected son. They know they are at HIGH risk to have autistic children (and other health issues) and made dietary changes and take vitamins accordingly. and more importantly they don't believe pediatricians are all knowing and have already stated they will not vaccinate their children according to the AAP. They have a healthy skepticism to authority.
Get the word out to your age group so parents thinking about having children can prepare their bodies to have healthy children.
With each new vaccine or new chemical in the environment we will lose more and more children to autism. We need to activate the DAN protocol before we conceive.
PS Remember "well behaved women never make history." so keep misbehavin... fight the power!!!!

Dr Mark Jones

I did a PhD to help children with medical issues. It became http://www.animalagentz.com
I went to medical events and there was support but it was mothers using blogs who said it could be used to help their autistic children. Autism is a spectrum disorder, and this means some children are very functional.
People do not understand this issue, unless you are a mom with a autistic child.

DONNA LUNA ARGERIE

GOD BLESS YOU FOR THE EXCELLENT PIECE YOU HAVE WRITTEN.

I AM A GRANDMOTHER OF A FOUR YEAR OLD AUTISTIC BOY AND HAVE BEEB WAITING TO HEAR SOMETHING THIS ACCURATE.

YOU WILL GO FAR.

DONNA LUNA ARGERIE

CamJam

What a great article! If only MSM would read this...

@ Anne Dachel, sadly I don't think a thing will be done until the numbers rise to 1 in 20. I know this is terrible, but at times I wish Autism were highly contagious. Only then would officials seriously look into WHY the rise in Autism. And... the bullies would stay clear of my child when he enters Public middle school. Currently he is in Kindergarten...

jruch

Bravo Ms. Lay for picking up on this. I enjoyed reading it and I think you have helped clarify an important challenge. The stories in print simply don't match the stories on the ground. We have precious few embedded journalists in this war. Those that cover from the outside do not have the needed background to filter and balance these sniper stories of highs and lows. I would suggest to any journalist that really wants to get it right to submit their piece to at least 2 or 3 different sources in the autism community to get feedback as Ms. Lay has. You need multiple viewpoints because the experience of autism varies greatly by age, sex, spectrum traits, economic conditions, support network, medical history, etc.

The best way journalists can educate is by honoring their duty to get their stories right. If they take that responsibility seriously, they will shape accurate views along the way. When the media decides to provide an educational snapshot on autism, it is almost always a political piece representing a narrow segment of the autism community. Autism is an incomplete science, and anyone providing simple clean answers as fact in the media has lost their impartiality, humility, and stake in the truth. The most egregious examples are in declaring there is no epidemic and in exonerating any specific contributory factors in an illness with unknown origin.

This afternoon Ben and I had a fun time with one of his favorite activities – swimming. We had a great time, but at the end. Ben got out of the pool on his own and started a sad cry. He wasn't misbehaving, he was just upset. I don't know why. He can't tell me. Did he hurt himself and I didn't notice? Was he hungry? Just tired? A tooth just fell out, was the chlorine bothering his mouth? And then there is the whole world of emotions that children with autism deal with just like any other kid. Did he just miss his mom or sister? Or the TV? Many of these kids can't communicate any of those messages. I can convey my frustration at not knowing why he was upset and not knowing how to solve the problem, but imagine how frustrating that would be for a child with a need.

Ben's fine now, but I still don't know for sure what was bothering him. You just try everything. That's my autism snapshot for tonight.

rileysmom

Thank you Rebecca, well written piece of work. Now, where can she actually PUBLISH this? Has it been considered for publication in any main stream media outlets? Thank you Kim and Ms Azuma for adding your voice to her piece.

Stagmom

I was encouraged that a student would approach the topic. And Rebecca did a fine job. Remember, she was starting from ground zero as far an info about autism. Sometimes we forget that - the vast majority of people in media, politics and even medicine know nothing about what we go through every day.

Anne Dachel

Excellent piece here about autism coverage in the media. I marvel at the "feel-good" stories about walks for autism, raising awareness, etc. ...or the dire reports about parents needing services they can't get or schools going broke dealing with autistic students.

The rate is endlessly given with absolutely no alarm ... no concern about the future for hundreds of thousands autistic children.... No one even looks for the misdiagnosed autistic adults that are supposed to be out there SOMEWHERE. No one speculates on what the future holds if the rate of autism continues to soar. Will anyone notice when the outdated rate of one in 150 is updated? Will it matter if new numbers show autism really affects one in 100 kids? One in 75? When does it get to be alarming?

WHY IS IT ACCEPTABLE THAT WE GET NO ANSWERS FROM OFFICIALS WHO GET BILLIONS TO RUN HEALTH CARE IN THE U.S.? HOW MANY YEARS WILL WE BE HEARING THAT THERE'S NO KNOWN CAUSE OR CURE FOR AUTISM? HOW LONG WILL THE "EXPERTS" AT THE CDC BE THROWING UP THEIR ARMS IN CONFUSION, STILL NOT SURE IF AUTISM IS REALLY ON THE RISE? HOW LONG WILL WE SEE AUTISM MERELY DEFINED AS "A LACK OF COMMUNICATION SKILLS AND AN INABILITY WITH SOCIAL INTERACTION"--------BY REPORTERS WHO'VE NEVER SPENT ANY TIME WITH AN AUTISTIC CHILD?

HOW LONG IS THE PRESS GOING TO KEEP ON GIVING THE CDC THE FINAL WORD SAYING STUDIES SHOW NO LINK, WHEN SO MANY CHALLENGE THAT CLAIM?

The lack of any concrete facts about autism leads to the likes of Denis Leary and Michael Savage promoting their
ridiculous, totally unsubstantiated theories.

Most of all, we have to address autism as a health care crisis that threatens our economy. How are we going to care for a generation of autistic adults who will live long lives dependent on the taxpayers? Has anyone in the government figured out the cost?

Sorry to vent here. I've long been in total disbelief at the coverage autism gets in the mainstream press, but there are bright spots out there. People like Sharyl Attkisson on CBS, Julie Deardorff at the Chicago Tribune, and Steven Wilson at WXYZ-TV Detroit are my heroes. Those with real answers about autism are going to take center stage.

Anne Dachel
Media editor

nhokkanen

This is an excellent article on the lowlights of autism journalism; thank you for your critical analysis.

Even when mainstream media are supplied with all the information necessary to investigate the vaccine issue -- names, dates, incriminating documents, contact information -- they still stop short.

Editors rationalize their inaction because they've bought into the myth that their published article will cause disease outbreaks. Funny, I thought that had more to do with poor sanitation....

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