DODGING THE CAUSAL QUESTION ON ADHD-TV

By Nancy Hokkanen


When Laura Kasemodel calculated that her home state of Minnesota led the nation in autism prevalence for several years, she logically concluded that local media would be interested in finding out why. Unfortunately a medium that epitomizes attention deficit disorder gave Laura's information a rather different treatment than she desired.

Laura knows numbers; she uses them daily at her job. She and husband Tim, a volunteer lobbyist, have two sons; one is autistic. For years Team Kasemodel has monitored IDEA data listed on the state Department of Education's website. This spring Laura tracked, graphed and plotted each year's birth cohort not only for autism, but for all IDEA categories.

In April the Kasemodels sent Minneapolis/St. Paul newspapers, TV and radio stations a document compellingly titled "Minnesota – Unfortunately, Still Number One." Cited were the MDE figures, and Fighting Autism's incidence rate of 1 in 81 based on the 2006 IDEA data. The "Land of 10,000 Lakes" also has that many children identified with autism – 9,929 in 2006, then 11,314 in 2007 – for a total gain of 1,385. or an increase of 13.9%.

The Kasemodels' report also offered suggestions for improving autism services in Minnesota, such as a state registry, support for students on the autism spectrum, independent living services for high school graduates, education for law enforcement and others, and development of in-state medical treatment sites.

Sadly but not unexpectedly, few reporters showed interest in the Kasemodels' autism prevalence information. Then, a ray of hope– a reporter from WCCO-TV in Minneapolis asked Laura and Tim to send more information. They did, as did others. Soon they learned a report would be broadcast on May 5.

The weekend before, a TV teaser appeared during commercial breaks: "Why more kids are being classified as autistic here than anywhere else." It was delivered by perky celeb-mom Amelia Santaniello, who co-anchors evening broadcasts with husband. It's also on YouTube. The description stating that the promo was "whipped together real quick [sic]" leaves the viewer with a sense of foreboding. You can watch it here HERE.

The resulting autism prevalence report on WCCO-TV bore little resemblance to the Kasemodels' material. Nowhere were the graphs and bullet points they'd crafted. Marred by omissions and cynical obfuscations, the report failed to even answer its own question. See "State Of Autism: Minn. Students Get Extra Help" HERE.

To start, that "Extra Help" headline is debatable, and stokes competition over school budget priorities. Few administrators or parents believe that schools' autism services are receiving adequate federal funding through IDEA, or from the state.

Santaniello made no mention of DSM-IV criteria; the difference between an educational autism diagnosis and a medical diagnosis received one vague reference to neurological function.

Several people I spoke with were aghast at Santaniello's tautological statement, "The more students schools say are autistic, the more money they get for special education," which implies that schools push hard for more ASD labels. Conversely parents on blogs and listservs frequently complain that schools are reluctant to give autism labels due to the financial obligation it entails.

The WCCO report seemed determined to prove that parents are relying on dime-a-dozen school district evaluations instead of a presumably more prestigious but still unexplained "medical evaluation." Though the state's education commissioner said "I don't think so," the reporter undermined that remark in the next paragraph.

As a rule parents are not eager to hear that their child has autism, so relying on one diagnostic source is questionable. From anecdotal experiences I've heard and read over the years, parents usually get a second opinion – diagnoses both from the school and a medical professional.

Had Santaniello questioned people at the state autism conference the week prior, she'd learn those realities – and also find out that parents of ASD kids cluster to specific school districts. A few years back parents steered each other to Hudson, Wisconsin to get better services.

Ultimately WCCO's report dodged its primary question. Rather than taking the tack that more children are being CLASSIFIED as autistic, the reporters should have asked why more kids are BECOMING autistic in the first place. Or rephrased, "How are more children becoming neurologically damaged?"

After WCCO-TV's autism report aired, disgruntled parents wrote to Ms. Santaniello. Her replies indicated that her producer has a child who received the notoriously vague PDD-NOS label. In retrospect the report's structure made sense given the context of a perplexed mother with an agenda, but that's unacceptable coming from what was once a top-flight news station.

For almost ten years TV, newspaper and radio have failed miserably at reporting on the biological causes of "autistic" symptoms, instead perpetuating the myth that autism is a mystery, or a collection of aberrant behaviors. Investigative journalism has become a thing of the past, lost to corporate ownership and budget reductions. WCCO-TV recently caused a local kerfuffle by abruptly firing its beloved long-time weatherman to cut costs.

Complaints aside, strike another blow for autism awareness and the power of persnickety viewers. Ms. Santaniello told one critic that WCCO-TV would be doing more stories on aspects of autism. But can a medium that compresses data into overgeneralized sound bites be relied on for competent coverage? Stay tuned.

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Nancy Hokkanen lives in Bloomington, Minnesota with her husband and 10-year-old son. She contributes to autism listservs and volunteers for Generation Rescue, A-CHAMP, and the Minnesota Natural Health Coalition.


LAURA KASEMODEL'S REFERENCES:

Minnesota Department of Education
http://education.state.mn.us/MDE/Accountability_Programs/Program_Finance/Special_Education/Child_Count/index.html

Fighting Autism
http://www.fightingautism.org

Minnesota Department of Health Annual Statistics
http://www.health.state.mn.us/divs/chs/annsum2.htm

Comments

[Get after Santaniello]

Did anyone send the TV lady the Sick Monkeys studies. She may want to take a look at it whilst she mulls over the 1 in 44 number. Doesn't the media have some sort of social and moral responsibility to speak the truth to the public?

What's going on there exactly? Why the high numbers? Aren't they alarmed? Don't they want to know so that they can fix it, or *pretend* to fix it. To say that the schools are diagnosing and the docs are not, is no excuse. Obviously the schools perceive that the kids are unable to learn. I doubt the schools are so rich that they are busy handing out the disgnosis just to give services. We usually have to fight tooth and nail to get services for our kids.

Are there going to be special rally signs for Minnesota numbers? Just so someone notices. Is the CDC controlling this mess?

[Gatogorra]

I hope that, one day, when the "Cognitive Holocaust Museum" is established to memorialize the victims of this repulsive era of medical and industrial corruption, Amelia Santaniello's segment is played on an endless loop as a classic example of how media contributed to and glossed over the crime.

What an ass.

[Lisa S]

Park Nicollet Clinic in Minnesota had an issue with proper storage of vaccines and had to re-vaccinate lots of kids. The re-vaccination schedule was aggressive. It would be interesting for someone to do a study to see what the autism rate is among that population. Would anyone in the local media consider investigating this, I wonder?

[Teresa Conrick]

Hey to all you Minnesota folks! You guys are great! Keep pushing and if we can help down here in IL, let us know. How bad does it have to get before this is taken seriously? Hope to see you all at Autism One.

"They can run but they cannot hide"

[Lets tell EVERYONE about this!]

"Sadly but not unexpectedly, few reporters showed interest in the Kasemodels' autism prevalence information."

Did the Kasemodels happen to send this to the Governor of Minnesota? Maybe the Governor will have more clout and could get the CDC in to investigate and actually do something about this. Don't you think? After all isn't it the CDC's job to *CONTROL* disease. They are evidently unaware that the rate of autism is as high as 1 in 44 in Minnesota. Someone needs to tell them. If the Minnesotans keep hiding the truth how will the CDC know so that they can actually DO something about it.

If the Governor refuses to do anything, the Kasemodels should send their report to the CDC. OR maybe they can cc the CDC and the White House as well. That way everyone will know that everyone has it. We don't want anyone to say in a few months and years, well we didn't know.

Oh, I would definitely cc Sharyl Attkisson at CBS as well. She will know who to interview and put on national TV to answer that question.

And please keep us posted on what happens. Keeping you guys in our prayers. Something definitely needs to be done about this - 1 in 44. I won't be able to get over this for a while.

[Heather O]

Thanks for exposing our sad TV reporting Nancy! I was also outraged when I saw the report and sent Amelia Santaniello the following e-mail. She replied with this:

"Thank you for taking the time to write. As you know the subject of Autism is wide ranging and we are committed to reporting more stories about the many different concerns that it entails. Unfortunately, we can’t put all the information into a four minute story, but we are working on several others. We are taking a look at the heavy out of pocket expenses parents are dealing with and also some parents who are using the Gluten free, casen free diet. These are just a couple and there are many more."

I don't believe for a second that they didn't have the time to cover details. Playing dense is my MO.

Here's what I wrote:

The report stated “Even a few years ago, Thomas may not have been considered autistic” However, since as early as 2000, The Minnesota Autism Spectrum Disorders rules https://www.revisor.leg.state.mn.us/rules/?id=3525.1325 lists Asperger's as a qualifier for consideration of an educational ASD label. This is based on the Diagnostic and Statistical Manual of Mental Disorders or “DSM” used by mental health professionals.

Your report also states: “With no medical diagnosis needed to receive special education services, children in Minnesota can be labeled autistic by school districts alone.” This is misleading. Other states do not require an clinical or medical ASD diagnosis for special education services. In addition, according to Minnesota rules, even with clinical or medical ASD diagnosis, a student may not be eligible for special education services.

My son received an PDD-NOS medical diagnosis from Fraser before being ASD educationally labeled . Fraser came with a 6 month evaluation waiting list and a $700 bill. You’re correct that many families cannot cover the cost. It’s my experience and that of many other families, that parents have to advocate for special education services. They are not handed out.

The biggest misleading statement your report makes is “The more students schools say are autistic, the more money they get for special-ed”. Although special-education is federally mandated, Minnesota schools only receive about 17 percent of special-ed costs through federal-aid. State-aid covers around 42 percent . So in Minnesota, 41 percent of special-education costs must be covered by individual school districts. Schools are dipping into their general education funds to cover the costs of the federally mandated special-education programs. Schools struggle and parents struggle to get their children appropriate special-education services. Your report is a slap in the face to those of us living with autism every day.

I’d like to see a WCCO report about big picture for children with autism. In addition to educational issues, children with autism face many other issues, including chronic health problems. It’s a 24/7 epidemic that has been mainly sheltered from the public conscious. Soon, the large wave of children with autism will begin reaching adulthood and require about six times more resources.

[Hide the truth quick!]

So Santaniello decided to hide the truth to save her job. Do you think people are noticing the 1 in 44 and the 1 in 55 numbers yet? What does it need to drop down to before people will notice that almost everyone is autistic? How long can the TV stations hide the truth? Will they wait till the equivalent of the loss of the Arctic ice cap occurs before they suddenly "wake up" to the damage? Will it take the equivalent of hurricanes and flash floods and tornadoes and complete and utter devastation before they wake up and take notice?

I don't get this "let's bury our head in the sand mentality." This needs to be a state emergency. Guys, your future is looking very bleak, 1 in 44 kids are incapable of functioning normally. Do something for heavens sake!! Pretending its not there is not going to work!!

[Maurine Meleck]

Nancy,
Thank you for this well written piece. Having grown up in Minneapolis, where many friends and relatives still live, I take a special interest in this state. It, like so many other stataes, fails to address the real issues with autism and the school systems. It is so frustrating to have our material misconstrued by the media. I think we have all been there, unfortunately. This problem will take more than a village to fix.
Maurine Meleck
South Carolina