MISUNDERSTANDING THE ABC's OF THE AUTISM EPIDEMIC

By Anne Dachel

I watched the ABC Nightline "SEE ABC CARES ABOUT AUTISM" piece in which reporter John Donvan investigates how autism affects girls.  We see 8-year-old Kaede Sakai on the news video.  Donvan speaks in soft, concerned tones, expressing his understanding of the struggles faced by this young girl.

Kaede has problems at recess, interacting appropriately with the other students.  She doesn't possess the social skills to get along like most kids.

The question is raised about the rate difference between boys and girls with autism.  Why are boys more likely to have autism than girls?  We're left with the idea that it's easier to recognize autism in boys than In girls.

ABC Nightline produces Brenda Myles, "one of the lead researchers specializing in the quite narrow field of girls with autism. "  This expert tells us that the disparity is because "autism can be more difficult to detect in girls."  We're told "girls are under-diagnosed" and that Myles believes "social skills are not as ingrained in boys as they are in girls."

So what is the lesson ABC Nightline is trying to teach us here?

We are to believe that there are lots of girls out there with autism who are misdiagnosed/undiagnosed because "some researchers and psychologists believe that symptoms of autism in girls might therefore be more mild, or more easily explained away as something else"?

Furthermore, "girls are typically more developed in certain social and conversational skills, further masking possible indications of autism."  ABC Nightline gives us another authority, psychologist Shana Nichols saying, "A girl's autism might even pass unnoticed if a test for conversational ability is kept short enough."

ABC Nightline, with the fatherly demeanor of John Donvan sitting on the steps talking with Victoria Roma about her difficulties, gives us nice look at autism. Victoria is articulate and conversational with Donvan and we see one version of this disorder.

Again ABC Nightline fails our children.

There is no mention of any cause for autism.  The autism rate of one in every 150 children doesn't even make it into the article or the video.  It's certainly nothing to be concerned about to ABC Nightline.  Kids have autism is the message from ABC Nightline--we don't bother asking why.  Instead, ABC speculates about "boy autism" and "girl autism" ---nothing that would indicate that autism destroys children and families.

One of their sidebars has the link:  Autism: What's in a Number? from last February Autism: What's in a Number?   In that article, ABC has Dr. Marshalyn Yeargin-Allsopp, chief of the CDC's autism program, telling us that the new rate of one in every 150 kids is no big deal.  She says, "They're not higher than any previous estimates."

Autism is a curiosity to ABC Nightline, certainly not an emergency or a crisis.  Donvan looks at autism like the observer might ponder black holes in outer space, interesting but not anything to worry about.  He leaves us with the thought, "Of course, autism is something none of us really understand. Even the determination of whether 'girl autism' is different from 'boy autism' is an unanswered question. But one that is worth asking."

Shucks, try as we might, we just don't get autism.

Actually, it's ABC Nightline that's is missing the message here. Autism is a disaster.  It's consuming our children right before our eyes and we just pretend it's always been that way.  Maybe ABC Nightline should pay a little attention to the description of Kaede Sakai's two brothers who also have autism.

Donvan tells us,

"The Sakais also have two sons touched by autism.

"Kaede's brothers, Tom and Kito, have many issues, including an inability to give and take in conversation, and intolerance of various physical stimuli, like certain kinds of clothing."

" ' [Kito] would pull at the feet of his pajamas and scream until we would take them off,' said Kristi Sakai.

"The boys also have nearly uncontrollable fits of fury that can last for hours and be set off by being given the wrong shirt or because a familiar routine was changed at the last minute. The boys, however, were more easily diagnosed with autism."

Seeing mildly affected college students and young adolescents engaging in conversation is a far cry from children screaming and having "nearly uncontrollable fits of fury that can last for hours."  Maybe John Donvan should consider that if one in every 150 kids is now diagnosed with autism, we'll have a lot of adults with autism engaging in this kind of behavior in the near future.  And if Donvan bothered to look into it, he'd find that there aren't a lot of adults with autism out there now.

Donvan's selective look at autism ignores the picture of autism that wouldn't look so good on ABC Nightline.  We don't see the teenagers with autism, still in diapers, nonverbal, dangerous to themselves and to others.  We don't see those with constant diarrhea, epilepsy, and life threatening allergies.   It might be hard for Donvan to be so
casual and conversational if he showed us this side of autism.

We don't hear John Donvan expressing any regret about a devastating disorder that robs children of their future and their happiness. These kids are the way they are and we just need to understand them -- that seems to be the message to viewers.

ABC NIGHTLINE'S selective and nice look at autism is hardly going to prepare us for the disaster we'll all be facing in the coming years as all these disabled kids become dependent adults.  Caring for Kaede Sakai with Asperger's Syndrome won't be the challenge for society that providing for her two brothers will be.

Anne Dachel is Media Editor for Age of Autism.

Comments

[Twyla]

I do not feel that anyone posting here was judging you, Kristi, and I too am so sorry if that was how it seemed. You have SO much on your plate, and I have nothing but admiration for all that you are doing for your family and the autism community.

It must be hard to put time and energy into being filmed for this news story, and in the process allow the world into your family’s lives, and then hear criticism of the story. The criticism was certainly not aimed at you! And it was wonderful for a piece of your world to be expressed in this moving story. You and John Donovan are to be commended for trying to raise autism awareness, in particular for exploring some of the issues more common among somewhat less severely affected girls. Certainly there is great value in representing this aspect of the diverse autism spectrum.

Frustration was expressed because in general the media and many “experts” seem to have a blind spot regarding biomedical causes and treatments for autism, and because there are not enough depictions of full blown autism, but this is not in any way a judgment on you – a hard working mother doing your utmost to help and care for your family.

Wishing you and your family all the very very best that life has to offer.

[Barbie Hines]

Kristi:

"In return I have been falsely reported to the DHS (cleared as unfounded), been essentially called a bad parent on national television, been criticized as my children are "not autistic enough" or that we don't portray the "horrors of autism" enough--or conversely that our children are genetic misfits and how dare I give birth to three of them. Have I given up? Have I run and hid? No. I continue to serve the autism community---including YOUR children.
So before you judge me, try walking a minute in my shoes. And maybe think about the fact that we are a real family, with real needs. And before you criticize John Donvan, be grateful that he cares about families with autism and is trying to raise autism awareness. Why? Because he ALSO has a family member affected by autism. Think before you fly off the handle and judge."

I am so very sorry that this has happened to you...I personally did not take any comments in this article, or the comments that the others below have made, as judging of you personally...I am truly sorry that it feels that way.

I do agree with the others that the media is not doing a very good job of portraying what autism actually is...how hard it is on families...how hard it is for the affected children, etc. I believe and hope that this is what others are trying to say also.

You do not have an easy road...nor do your children or husband...and I wish so very much that you didn't have the pain and endless work that you have so wonderfully embraced. I am impressed and distressed by what you handle everyday...that is why I believe it so very important that the media step up and start reporting more accurate and impressive pieces...while Mr. Donovan may share some of our experiences, and while he may be a very great human being, he didn't do a good job on this piece.

Again, I wish you and everyone in our positions the very best...I pray for wonderful adult lives for all the children...I pray that suffering parents will live long enough to see their children finally brought to health...and I pray that someday soon the media will help us in our plight...there truly is so much they could do for our kids.

[Kristi Sakai]

It was my family featured in the Nightline and ABC World News segments on Girls with Autism. The program was a "glimpse" a question as to whether autism is in fact more prevalent in girls than previously addressed. It is also the briefest glimpse into our lives and within the time frame possible in a national news segment. John Donvan and crew were only in our home and at the school for a few hours, it simply was not possible to explain or demonstrate all of the challenges my children and our family faces. Do not presume to think that because you saw a brief glimpse of what we face that you know us or what challenges we live with every day.
ALL of my children, including my daughter, have faced ongoing significant challenges with autism--as have my husband and I. ALL three have associated medical issues. ALL three have struggled in school in spite of their high IQs (requiring constant communication and meetings with the school, often going down TO the school and frequently speaking by phone--sometimes daily--to staff during a crisis at school). ALL three require various ongoing psychiatric, psychological, medical treatments and therapies. We have nearly been bankrupted, I pay $1,400 a month in medical insurance premiums, my husband nearly died more than once in the last two years from stress-induced Crohn's disease. I have had to carry nearly the entire burden of caring for our children for years including their many medical and school appointments AND the financial responsibility for taking care of my family (I am self-employed and work around the children's schedule and needs).
In spite of all of the above, I have been a strong supportor of the local, state and national autism community. I dedicate all of my "free" time to providing trainings for schools, organizations and a significant amount of pro bono work for families--whether those with "classic" autism or "high functioning" autism. I put my money where my mouth is. In return I have been falsely reported to the DHS (cleared as unfounded), been essentially called a bad parent on national television, been criticized as my children are "not autistic enough" or that we don't portray the "horrors of autism" enough--or conversely that our children are genetic misfits and how dare I give birth to three of them. Have I given up? Have I run and hid? No. I continue to serve the autism community---including YOUR children.

So before you judge me, try walking a minute in my shoes. And maybe think about the fact that we are a real family, with real needs. And before you criticize John Donvan, be grateful that he cares about families with autism and is trying to raise autism awareness. Why? Because he ALSO has a family member affected by autism. Think before you fly off the handle and judge.

[Amy]

I'm confused - doesn't that 1 in 150 number include children who were diagnosed with autism or other spectrum disorders?

[Michelle's Mom]

Thank you Anne for this:

"Donvan's selective look at autism ignores the picture of autism that wouldn't look so good on ABC Nightline. We don't see the teenagers with autism, still in diapers, nonverbal, dangerous to themselves and to others. We don't see those with constant diarrhea, epilepsy, and life threatening allergies. It might be hard for Donvan to be so casual and conversational if he showed us this side of autism."

When is the media going to address the real concern? It's not about social deficits - it's about being physically ill. I didn't see the program, but I can tell you that no one would mistake Michelle's full blown autism as Asperger's.

Theresa

[Dan Olmsted]

Petra's comment is right on the mark, at least from my experience. Most of the kids I see with autism are really, really impaired and this boilerplate lingo about "communications deficits, difficulty with social relationships and stereotyped behavior patterns" doesn't begin to convey the real picture. That's why in a recent column I commented favorably on a book title I came across from the '80s: "Autism: Nightmare Without End." I think if more journalists had more experience with more types of kids with autism, including the most severe kinds, it might shake up their blase coverage -- which is why it's a shame (literally) that, as far as I know, no major media outlet has a full-time beat reporter on this topic. If people with Asperger's or other milder variations are happy with their lives, God bless them. But that's not what this "nightmare without end" is really about, and it's past time for the media to figure that out.

[Nobrainer]

"As documented in the paper "Autism - a Novel Form of Mercury Poisoning", historical cases of mercury exposure have shown that males are on average affected worse than females. Dr. Boyd Haley found that in test tubes testosterone exacerbated the harm to cells from low level mercury exposure, whereas estrogen had a protective effect. Perhaps females have evolved with better detoxification mechanisms because we are the ones who become pregnant and nurse babies."

I think everyone seems to be missing the point, Dr. Boyd Haley included. The fact of the matter is that too much of everything is bad for everyone if they are not equipped to handle it. While a little testosterone is bad for girls, this very same amount of testosterone is not bad for the boys at all because their bodies are equipped to deal with it. Similarly, while a little estrogen is not bad for girls too much estrogen is vey bad for them too.

What it ultimately drives down to is the concept of balance - anything, anything, that you do to the human body to cause it to lose that balance that nature intended for it, will cause an imbalance in its working and will promulgate and predispose it to chronic disease. Then what do you do? Traditional medicine has no answer because it can't even recognize it and alternative medicine is going crazy trying to pinpoint symptoms because they have not seen anything like it before. Now you tell me what's easier - to stop shooting 48 vaccines into infants or trying to figure out and treat the complications resulting thereform. Now that ought to be a no-brainer!!

[Petra]

In response to Stagmom's comment:

"As the mother of three girls with autism, I have to ask is this a question of "boys versus girls" or "Autism versus Asperger's/HFA"?
[snip]
Does the media understand the difference?"

I think that the true question is even more polarized than 'boy vs. girl', 'full blown autism vs HFA/AS'. I think that from the popular media's perspective it's a question of 'are the affected kids easy going, complacent, friendly, and somewhat communicative, and therefore make cute poster kids for the fact that having a child with autism really ain't that bad' vs. 'clearly affected, with behaviors that are considered a 'problem' in polite society, and raising a child with these challenges requires all you've got and more'.

The media just doesn't want to see that quite a few of our spectrum kiddos do NOT blend into polite society very well (regardless of where they've 'landed' on the spectrum continuum), that they need a lot of help, understanding and tolerance, and will need such for a long, long time; probably until they die.

After all, problem behaviors are the results of bad parenting, right? So by showing only the 'good' kids with autism, autistic kids with challenging behaviors can be 'dismissed' as being a parental problem (yes, feel free to call me cynical).

I very much realize that my challenges with my AS/CAPD/NLD/anxiety prone/throw in a touch of bipolar son are very different from what they would be like if he had developed full blown autism (and I thank my (un?)lucky stars for that). Call my perspective on the high functioning side of the autism spectrum colored, but I know quite a few kids with AS or HFA (half of my son's current 4th grade class qualifies as such..and I would put about 80% of the attendants of his summer camp in that category) and I have YET to see the unique and wonderful talents/abilities that having Asperger's is commonly associated with in the popular media (if I had gotten a quarter for every time somebody outside of 'the community' had asked me about my son's special talents, or said to me 'oh, he has AS? That means he must be really good at math'). Most of the so-called 'high functioning' kids STRUGGLE, and struggle HARD, with very little 'special talents' to compensate for their challenges (unless you want to call my son's uncanny ability to imitate either a feral wolf or an enraged bull when confronted with anxiety provoking situations that he has no control over.. like lost luggage or an unannounced schedule change in the classroom.. a special talent).

Anyway, getting of my soapbox. Bottom line: portraying our kids as 'friendly, somewhat social, well behaved, complacent, etc' in the popular media is easier to swallow for the 'masses' (the only setting in the media where portraying our kids' challenging behaviors works is in 'reality show settings' like Super Nanny, where the 'expert' comes in and poof, all the challenging behaviors magically disappear after implementation of the 'time out chair'..if only it were that simple..)

[Robin Nemeth]

I didn't really think that the program had much to say of interest from the perspective of dealing with aspergers, as a female, let alone autism.

"girls are typically more developed in certain social and conversational skills, further masking possible indications of autism."

What the program doesn't address is that while this may be true of people in general, I don't think it's true of girls with autism. I do think, however, that expectations are higher, for females. Expectations of social abilities.

I was an engineer before I had my four children. I once worked for an engineering firm and I spoke once with one of the other female engineers there, and she told me that when the firm I worked for was hiring, they decided to specifically target women engineers when recruiting employees. They'd felt, she was told and passed on to me, that they had a better chance of not getting the stereotypical 'nose buried in the numbers', socially challenged, uncommunicative geek.

Ha. Boy oh boy were they ever surprised when they hired me and then found out the truth about me!

[Sonja]

As the mother of a girl as well, we have lived in both worlds...beginning with the challenging autism and after 6 years of expensive bio-med, and various other therapies, we are now maybe in the HFA world. They are a million miles apart! I hope and pray by the time my daughter is 14 she will look like Victoria (maybe even better?) but my God what a journey to get there! The girls were lovely and my heart went out to each one and at the same time celebrated how well they presented.

Sonja

[Twyla]

It is wonderful that researcher Brenda Myles is studying autism in girls, and that she (and others) are working on better diagnosis, support, and social skills training for girls with autism. But, when it comes to the issue of why many girls with autism have less severe symptoms than boys, she seems to fall back on the ancient theory that parenting skills are the determining factor.

The article on ABC's web site states that, while Kaeda's autistic brothers "have nearly uncontrollable fits of fury that can last for hours", Kaeda "had the sensory issues... But she wasn't having the big meltdowns..." She has a desire to please, and so when asked to do something "she would throw her whole heart into it and do what the adults wanted". She has good verbal skills although she has trouble understanding more complex social interactions. Her brothers, on the other hand, have "an inability to give and take in conversation".

The explanation according to Brenda Myles: "We overtly teach social skills to girls," Myles said. "They are told not to get angry, they are told to be nice, they are told to share -- all of those behaviors... It's more appropriate, if you will, for a boy to have a tantrum and major meltdown than a girl."

So, if they just set higher expectations for the boys and overtly taught them social skills, would they do better? If only it were that simple. I'm sure that all their lives adults have tried to get these boys to behave and communicate.

Here is another possible explanation: Perhaps all three children are suffering from mercury toxicity, from thimerosal in vaccines and/or from mercury in our environment. Perhaps this family shares a genetic susceptibility causing an impaired ability to excrete mercury. As documented in the paper "Autism - a Novel Form of Mercury Poisoning", historical cases of mercury exposure have shown that males are on average affected worse than females. Dr. Boyd Haley found that in test tubes testosterone exacerbated the harm to cells from low level mercury exposure, whereas estrogen had a protective effect. Perhaps females have evolved with better detoxification mechanisms because we are the ones who become pregnant and nurse babies.

It seems so obvious, but instead we jump through hoops looking for complicated social conditioning theories.

Whatever the cause, clearly this girl has a milder form of autism than her brothers, which is not to downplay the difficulties she faces. It should be noted that some girls do have full blown autism, and, I have heard, may be harder to treat biomedically than boys

[Kelli Ann Davis]

Classic:

Donvan looks at autism like the observer might ponder black holes in outer space, interesting but not anything to worry about.

Rock On!

[Stagmom]

As the mother of three girls with autism, I have to ask is this a question of "boys versus girls" or "Autism versus Asperger's/HFA"?

No one would mistake my girls for girls with Asperger's. I promise you that. I have enough friends with Asperger's to understand that the diagnosis brings real challenges along with unique and wonderful talents/abilities. I'd call Asperger's a double edged sword without meaning to sound disrespectful. But it can be a far cry from the challenges of full blown autism.

Does the media understand the difference?