In This Edition
In the News
Are you receiving TACA's regional newsletters with information on local TACA meetings and events? We can't send it to you if we don't know where you are! Please Join TACA (it's free) or update your membership to include your location. If you include your mailing address, you'll receive TACA's print newsletter, Talking Autism.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.
October 2010 #1
Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.
We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.
We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
1. Find a TACA Meeting
Come to a TACA Meeting!
TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books, CDs and DVDs that can be checked out by members at no charge.
Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.
Are you wondering what happens at a TACA meeting? Watch our video.
2. Join Us for Coffee Talk!
Come and receive some extra support or to
chat all topics related to autism and meet
other TACA families at these informal,
3. Pepsi Refresh - Vote for TACA today and everyday in October!
A vote for TACA is a vote for $50,000 of
Real Help Now for families affected by autism
You can help TACA provide financial assistance to these families to ensure that their child gets Real Help Now. Help us change the life of a child – one click everyday is all it takes.
ABOUT THE PROJECT
Vote from your mobile phone
Text to 73774 and in the body of
the text put TACA Code: 103042.
Please help us spread the word!
- Forward this email to all of your family and friends.
- Send out reminders on Twitter.
- Promote on your Yahoo! groups.
- Put a widget on your website or blog.
- Vote every day!
4. The Chase Giving Continues!
Seventeen charities will share an additional $500,000! TACA was one of those 17!
The Chase Advisory Board has selected 17 charities to split $500,000! These donations will inspire deserving charities to take the next step and help communities grow even stronger. It is amazing what we can do when we all come together!
This is amazing news. Not only did we receive $20,000 for the June 2010 efforts – we are receiving an additional $30,000! This is a total of $50,000 from our friends at CHASE! These funds will directly support TACA Chapters deliver our 12 programs – where TACA volunteers help families every day. Read more.
5. Hope 4 Hanna
Hope 4 Hanna, a run/walk fundraiser in San Clemente to benefit people with autism, had its second running Sunday, collecting nearly $70,000 in donations as of 10:30 p.m.
The event – named for Hanna Belden, a San Clemente 6-year-old who has autism – featured 5K and 10K adult run/walks, a 5K for children 15 and younger and a 0.5K event for young kids, plus a resource fair to inform and raise awareness about autism. The course took participants around the Plaza Pacifica shopping center on Avenida Pico.
Runners take off from the starting line Sunday in the second annual Hope 4 Hanna 10K/5K run/walk at Plaza Pacifica shopping center in San Clemente.
Hanna's parents, Josh and Lené Belden, and their friends Justin and Kristen Alderson founded the event last year. Before Sunday's renewal, they said they hoped to raise a total of $100,000, including $20,000 for the organization Talk About Curing Autism to use for marriage counseling, teen socialization groups and biomedical scholarships to help needy families deal with autism.
Proceeds primarily are intended for funding research for a cure, grants for treatment, and workshops to increase awareness and acceptance of people with autism.
For more about the event and to donate, visit www.hope4hanna.com.
6. Daily Autism Updates for Families
All news related to autism: AgeofAutism.com
7. The Global Autism Collaboration
On October 1, we premiered a new autism network called the "Global Autism Collaboration." Given the growing number of individuals on the autism spectrum along with the current economic condition, the need is greater than ever for autism groups worldwide to collaborate, share information, and support one another.
Not for-profit groups and organizations are invited to become members (for no fee). This includes in-person groups as well as online groups (e.g., Yahoo discussion groups). For-profit business are also invited to become supporters of GAC (but for a fee). The monies raised by GAC, through the for-profit supporters and donations, will be used to better the autism community by distributing information, funding research, and announcing new initiatives and programs that are available to the community.
The structure and policies of GAC, along with other information, can be found on the website, www.globalautismcollaboration.com. If you represent a not-for-profit organization or group, please consider becoming a member. If you work or own a for-profit business, please consider becoming a supporter.
8. Watch Autism in the News
|Is Autism Man Made?||Vaccines: Bad Combination?||Whooping Cough Shot Mandatory?|
|The Age of Autism authors Mark Blaxill and Dan Olmsted on the increase in the number of people with Autism and the search for its cause. Watch now.||Could simultaneous vaccines cause autism? Watch now.||Concerned parents say it's not effective. Watch now.|
9. Angie Dickinson Breaks Her Silence and Reveals the Heartbreak of Mothering a Daughter with Asperger's
Composer Burt Bacharach and his actress wife, Angie Dickinson, with their daughter, Nikki, 2, around the swimming pool of their Hollywood home in 1969. Credit: Bettmann/CORBIS When Nikki Bacharach was born in the summer of 1966, her parents were among the most sought-after couples in Hollywood. Angie Dickinson was a gorgeous film star who had appeared opposite John Wayne, Lee Marvin and Frank Sinatra. In the '70s, as the lead on NBC's "Police Woman," she would become the first actress to carry a hit drama in prime time.
A brilliant composer, Burt Bacharach had already written hits for Dionne Warwick, Dusty Springfield and Tom Jones, and would win two Oscars before Nikki turned 3.
From early childhood, Nikki suffered from the effects of her premature birth and the symptoms of Asperger's syndrome. Socially withdrawn and obsessive, she craved repetition and fell into bouts of frustration and rage. This was at a time when autism was believed to strike only the severely impaired -- "far gone mental cripples," as Life magazine put it -- and didn't apply to highly verbal, precocious kids like Nikki. The American Psychiatric Association wouldn't include Asperger's in its diagnostic manual until 1994, when Nikki was 27. She was diagnosed several years later, but her symptoms continued to worsen. In January 2007, at age 40, she committed suicide.
Angie Dickinson, now 78, recalls the life of her only child. The actress shares her story with reporter Ed Leibowitz.
My water broke three months early. It wasn't complete bed rest, but practically. That lasted only a week. Then the infection set in, and the baby started to abort. So I went to Cedars. I was in labor for 26 hours, and I was out of it, but I heard them say, "Angie, you've had a girl." That's all I remember. Nobody thought she was going to survive -- she was one pound, ten ounces. I was in the hospital five days, and I never went down the long hallway to see her through the window. I didn't want to have that memory and then have her go. She was probably up to two pounds by the time I saw her, the day I left the hospital.
For two weeks I had to stay in while the infection cleared up. After that there wasn't a day Burt and I didn't go to the hospital and just stand there looking through the window, watching her sleep. She was gorgeous to me, but she looked like a tiny sculpture of a prisoner of war because her legs were thick as a finger, and she had fairly big feet. Nikki had been put immediately into a preemie isolette, which is an enclosed incubator, and she lived there for nearly three months. In those days there was no touching of the preemies. No one was allowed to cuddle or soothe them -- not the nurses, not even their mothers -- in order to protect them from disease.
Even the doctors back then didn't know the value of touch, that if you never get touched or hear a loving voice or get held in those first months, you won't ever feel real or feel connected to anything. Not so long ago I was watching "2001: A Space Odyssey" for the umpteenth time with Nikki, and it hit me: You know that scene where the astronaut gets cut off and just floats into space? That's how Nikki felt -- how kids who have autism feel every minute of their lives. For the rest of us who can connect and ground ourselves so easily, it's impossible to comprehend.
While Nikki was in the isolette, we asked her pediatrician if there was a chance of brain damage, and he firmly said, "I'll have none of that." That was the end of the conversation. When she was released, she weighed about 5 pounds -- still quite small -- but she seemed contented and normal. In my opinion, she was doing wonderfully. Before she was a year old, though, she began having difficulties with her eyes. It turned out she had strabismus, which is where the eye turns inward, and all the rest of her life she could use only one eye at a time. We got to know the Jules Stein Eye Institute at UCLA very well, sad to say.
Angie Dickinson and her daughter, Nikki, at a Hollywood party in 1981. Nikki suffered from undiagnosed Asperger's Syndrome. Credit: Nancy Barr, Retna Ltd.
Nikki didn't speak until she was 3 years old, but then Einstein didn't either, and now they believe he might have had Asperger's. The doctor used to say, "If she wants the ball, the reason she's not talking is because you're giving her the ball before she asks for it." I think that was half true, but she was obviously storing a lot of information, because one of her first words was "meditate." That's the word I'd use when I'd see her sitting in her infant seat on the bench looking out at the trees and the sky, so she probably got it from me. She always loved when I would tell that story. She was proud of it, too.
People talked about my legs, but Nikki had legs more like her daddy's -- shaped great and very strong. As a kid she was wonderful at gymnastics, horseback, ballet, scuba diving and swimming. When she was only 4, she could play piano like a prodigy. She'd make up songs with fast rhythms and notes that all went together. Once when Nikki's paternal grandfather was out here, we sat listening while she played for us. When she finished, he said, "I know this sounds silly, but I haven't heard any wrong notes." There were none. Funny, but neither one of us considered that Nikki might have inherited some musical ability from her daddy as well. One of the original songs she played for us was called "I Can't Cope with My Purple." How interesting, since not having the ability to cope is the key to her disease.
I find most people don't absorb the phrase when I tell them that with Asperger's, you've got no coping skills. People think, "Oh, coping skills -- that means that you can deal with it if you sprain your ankle or you didn't get the job." The other person does not know and will never know that it means not being able to cope with anything -- any noise that bothers you, any disappointment, any fear, any pain, any strain, any sadness. Anxiety, frustration, abandonment. Loss, fear of loss. You have no way of blowing it off. It affects every breath you take.
One of the early odd things Nikki started doing was cutting all the hair off her dolls and off the manes and tails of her toy horses. Later on, around 4, she began saving everything -- a broken toy, a piece of glass, an old battery, dog poo, if we didn't happen to notice -- in a mound about a foot and a half high on top of a dresser in her closet. She would come up with new names for herself, like "Yellow Collar" or "Instead Blender." So you had to call her by those names. You don't address your child much by her name anyway -- it's "Honey" or "Sweetheart" or "Come over here" or "Get the hell over here!" She must have been about 5 years old when she decided she was Lorne Greene. She never watched "Bonanza" -- at least that I know of -- but she was Lorne Greene for months. When she had some exploratory surgery on her eyes, she wouldn't let them put the wristband on unless it said Lorne Greene. So they had to make two bands, and she was Lorne Greene. One day we were at the doctor's office, and who should be at the end of the hall but Lorne Greene. I introduced him to Nikki. I don't know what I said Nikki's name was, but after that Lorne Greene was over for her. Go figure.
I had decided not to work too much, especially away from home, until Nikki was 7 -- since in the Catholic Church that's when you reach the age of reason. In 1974, I took on the lead role on "Police Woman," which would give me a chance to act and still be a mother without having to leave L.A. But I pretty much took care of her for those first 7 years -- thank God. I think that's one of the reasons for her incredible progress: The total love and the total joining. I was continually keeping her connected, talking to her, hugging her, keeping her in a realm of comfort and familiarity, not letting her "drift into space."
We enrolled her at the UCLA Lab School, an experimental elementary school for kids of all backgrounds, some of them disabled. By then Nikki was so easily picked on, so easily criticized and ignored. She didn't consider herself an oddball, but she knew people stared at her because of what her eyes looked like. Still, she did manage to make friends with kids who were more understanding and nicer to be with.
I once asked Nikki what her favorite year was. "When I was 10," she said. "That was the sexy year." At UCLA she was friends with four or five girls who were as normal as they come. They called themselves "Judy's Kids," after those wonderful Judy Blume novels about adolescents going through puberty. I took pictures of them all at parties, and Nikki's always one of the gang; she seems to be having as much fun as everybody else. She seemed so perfectly normal then -- despite the obsessive talking, the shaving hair off the dolls, the upsets and frustrations. Sure, Nikki broke her glasses at times, and as she got older she would tear pages out of books or kick a wall once in a while out of sheer frustration. When you can't cope, you grab at the closest thing around. For me, these were just some of Nikki's "difficulties." I didn't understand why she couldn't do things or deal with things, so I couldn't help her do them or tolerate them or change them. I just found her excessive.
In the early '70s, you have to understand, we did know about mental retardation, and maybe a few doctors talked about autism, but how could Nikki possibly have either of those when she could express herself, draw, and play piano so brilliantly, when she had a great sense of humor, did well in school, and got along so beautifully with her friends? How could somebody say there was anything really wrong when we'd never met or even heard about anyone who was going through what she was going through?
Burt was much more into pushing Nikki to be on her own than I was. He'd tell me, "Let somebody else do that for her -- take her to school or whatever." For Burt and me, dinners had been about candlelight and conversation, but for Nikki, dinner was a time to talk endlessly about horses and gymnastics and imaginary friends. Afterward, when she was in therapy, Nikki would be told she was not the center of the universe. But she was. Remember, isolette-isolation. That made her the center of her own universe. She always felt, as extreme preemies do, that she was not grounded and not part of our universe. So Nikki was tough. She also had needs, and they had to be met constantly. In these kinds of situations the father usually can't understand why the mother just can't make everything right. Most fathers either blame the mother or inadvertently blame the mother. They lose the love and then they lose the interest and then they're gone. Burt and I split up in 1976 after 11 years. It's really, really hard, and I don't blame anyone for leaving.
When Nikki was 14, she became a Sikh. The Sikhs were loving and they were gentle -- which Nikki had to have. Perhaps the uniformity of the dress and the rituals made her feel like all of them as opposed to an outsider being looked at and stared at. I never asked why. She loved it, and that was all I needed. It lasted two or three years. They gave her the name Sat Kartar, which we didn't think translated to anything exciting at the time. I later found out it means something like "Walker of Truth." We would get up at 3:30 a.m., and I would drive her down there for sadhana, the devotionals you had to do before sunrise. I've got one picture of Nikki in her white turban with a rat sitting in it. She's holding another rat. Nikki loved the rats. We had 13 at one time. That's a lot of rat shit.
Being a New Yorker, Burt was very pro-psychiatry. In his world you did that sort of thing -- go to psychiatrists. I'm from North Dakota, and there we didn't. We go barefoot. Nikki began getting psychiatric treatment when she was about 8. The psychiatrists had no answers. There was one I would kill if I could get away with it. He'd tell me that when she'd act out or keep talking or repeating herself, I should just say something like "doorknobs" or "spaghetti." Something to make her go "Hmmm?" That's hardly explaining why she can't cope. He didn't get to the heart of what she needed at all.
Burt still believed Nikki was not doing well enough when she was a teenager and felt that it would be good to get some distance from me, because I was very symbiotic and too permissive. And I thought, Maybe he's right. Maybe that's what she does need. Perhaps I'm too close. That's the reason I gave in. The place we found for her was the Constance Bultman Wilson Center in Faribault, Minnesota. I kept telling Nikki that all kids go away to school to learn and grow on their own without their loving mamas. I convinced her, I guess. We flew to the Wilson Center in August of 1983. Weeks after she arrived, she called me and said, "It's not a school, Angie. It's a hospital." One of Nikki's psychiatrists back here told me, "Be prepared. It could take as long as nine months or even a year and a half for her to get well." She was there for 10 years.
We did have a lot of phone contact, and I would see Nikki at least four or five times a year. They gave me permission to take her on trips to places like the Canadian Rockies, the Tetons and the Yucatán. Once when I flew out for Thanksgiving, the director of the center wanted to invite Nikki and me to Thanksgiving dinner, but we'd already gone out. The local truck stop was the only restaurant open that day, so she called there. A girl picked up the phone, and the director asked her if Angie Dickinson was there. The girl thought it was a joke. "Yeah," she said. "She's sitting right here, next to Robert Redford." We actually went to that truck stop a few times.
Nikki did make some friends at the Wilson Center and had a couple of jobs. She did amazingly well, especially considering what I know now about the extent of the problems she was dealing with and how completely incapable of helping her the center was. She studied piano, but it got to the point where the strain of trying to see those notes became too much for her eyes. (The glasses she wore made her see things smaller than they really were. Try looking through binoculars from the other end-that's how Nikki saw things. Little things became even littler.) So she gave up the piano and began drumming lessons; she was a natural drummer. She played barefoot. She could sit in with the band and keep up with everyone, even if she didn't know what the songs were. Burt did a concert for charity in Minneapolis once, and he let her be the drummer on "Heartlight." Mrs. Hubert Humphrey was in the audience, and I have a picture of her presenting Nikki with a bouquet of roses.
When Nikki entered the Wilson Center, she had beautiful thick hair that ran down past her shoulders. Washing, grooming, general hygiene -- these were all burdens for Nikki. At home she had been used to taking showers for as long as 25 minutes, obsessively scrubbing and rescrubbing her arms and legs, but at the center they wouldn't allow her to stay in anywhere near that long. She ended up not washing her hair much, and after a few years of their bitching at her to get it clean, she said, "I'll fix it for you." She buzzed it off and kept it that way. I'm pretty sure she did it out of spite, but when anyone asked her why, she said, "For convenience."
They were trying to make her into something she was not -- somebody who could hold down a job. Somebody who could drive. They forced her to drive, which was insane. She totaled one car and wrecked another pretty good. They were trying to make her like everybody else. Her psychiatrist there told her, "Nikki, someday your mother is going to die, and then you're going to have to be responsible for your own self" -- which put her into a spiral she never got out of.
Nikki wanted to be a geologist, so when she was about to leave the Wilson Center in the winter of 1992, I started to look for schools with geology programs. Cal Lutheran in Thousand Oaks had a very good one, and I knew she would like that area. It's about an hour northwest of L.A. -- it's beautiful and quiet. When Nikki was out here on leave, we found an apartment close to the university, and from Minnesota that's where the moving truck went. There was a fantastic karate studio nearby, and Nikki began lessons and got so good, she earned her green belt.
At Cal Lutheran she had great teachers. She could only handle one class a semester with her poor eyesight. She did great on tests, of course, but writing was difficult. I missed one of her oral presentations, and she always said, "I wish you could've been there. I was terrific." I just loved her tenacity and her guts. Imagine what this brain could've been had it not been afflicted with so much.
Most geology students study earthquakes because they're part of the course work, but earthquakes are what made Nikki want to study geology in the first place. She loved feeling the power of earthquakes, and she always wished they would happen more often but without all the devastation. Most people feel like they're leaving the ground during an earthquake, but for Nikki it was one of the few times that she felt grounded, that she truly felt the ground. Sylmar in '71 was her first. When the Northridge quake -- the huge one -- hit in '94, she was about to come home from vacation in Hawaii and she missed it by less than 24 hours. She was devastated. Thank God for her karate master, Mr. Graham. He helped her through one of the most difficult times of her life. He was one of her most beloved friends to the end.
The first time I read about Asperger's was in Newsweek. My sister sent the article to me and said, "This sounds just like Nikki." The article is from July 2000. I still have it. I circled the last paragraph where it says that an institution is the last place these people should ever be sent, but it was too late for Nikki. I finally went to UCLA, and after examining her, the doctor there said she might have Asperger's. I said, "Doctor, she does have Asperger's." He didn't disagree. For Nikki, knowing what she had just didn't help at all. She still simply couldn't cope.
The noticeable deterioration came in the last 10 years of her life; it was horrendous toward the end. The worst seemed to start when I moved into a new house in '94, and the helicopters drove her crazy. Helicopters, lawn mowers, motorcycles, leaf blowers, and weed whackers were like a drill in her ear. She just really was suffering. She couldn't get rid of the sounds in her head. And she had to fight the eyesight thing every waking moment of every day all her life.
I finally said to myself, "You know what, Angie? You cannot live your 'other life.' " I realized that there was only one way to find real peace for Nikki, and that was to stop doing the "other things." Don't go to dinners or functions. Don't play poker. Just pretty much give it up, and I did. It helped. Nikki and I did everything together. We traveled together and saw movies together, even more than before. My life-conscious, subconscious, every conscious was Nikki; I was completely dedicated to her. She just was my soul mate.
In 2006, we went to Alaska, Las Vegas, Russia and Paris. We had melted cheese sandwiches with french fries every night at the top of the Eiffel Tower, and we'd laugh and say, "This French food is great." We loved Tahiti. Nikki went 31 times. (She counted them in her passports.) It's not only warm and hot there, but it's beautiful and peaceful, so her brain could really have a wonderful few days.
Nikki couldn't bear the thought of my death. It was obvious that the obituaries were filled with people my age. I asked her once about it when it became so overwhelming for her, and she said, "When you turned 70, I realized it could happen." It hit her hard -- the realization she could lose me and be left alone without somebody who cared about her or knew her needs. No one could take my place.
She talked a lot about suicide. She was very open about it, even to people she didn't know well. She read "Final Exit," a book about planning suicide, and she found that asphyxiation was the most peaceful way she could do it -- like going under anesthesia at the dentist.
What could I do? I had promised her I would never ever let her go into another hospital -- never -- and I meant it. One time when we were being lighthearted, I said, "Nikki, what would my life be without you in it?" She said, "Oh, you will be laughing on the phone and telling jokes and playing poker before you know it." She didn't know how much I loved her and would miss her and was entwined with her -- how much I wanted to make everything right for her. But I couldn't.
On her last Christmas Eve we went to church services. Nikki had always wanted to sing like most people, but she really couldn't, maybe because singing is so much about bringing out what's inside you. It's about letting people know how you feel and who you are, and Nikki had always been isolated from the outside world and so unable to get through. But that night Nikki just sang and sang. I could hardly hear her over everybody else, but when I looked at her, I smiled at how much gusto she had singing those Christmas songs. She was free and at peace at that point because she knew where she was going.
Ed Leibowitz is a writer-at-large for Los Angeles magazine. His articles have also appeared in the Smithsonian magazine, The Atlantic Monthly and The New York Times. This article also appears in the September 2010 issue of Los Angeles magazine, which features a special section on autism called The Mystery Among Us.
10. Still Waiting
Some autism rights advocates say there’s no need for a cure. An argument for why they’re wrong
I am a 54-year-old man with mild autism. I have poor fine-motor coordination and can barely handwrite. At one time I made a living as a medical transcriptionist, but I was fired because my autism impairs my ability to concentrate. I’ve been fired from more than 20 jobs and have been unemployed for three years. Rather than engage in productive activities, I spend much of my time engaging in ritualistic self-stimulatory behaviors. I twirl shoelaces and rock back and forth for long periods of time, and I have poor social judgment. In the past I have made inappropriate comments about people’s sex lives, and I once asked an overweight man if he got his clothes at a big and tall store. I also have a phobia of birds. As a child I was often bullied and ostracized by peers, and the majority of my social interactions have been rocky. I have never had a romantic girlfriend.
I have always longed for a cure. This puts me at odds with some people in the autistic community who believe that autism is not a disease and therefore requires no cure. Proponents of what is known as “neurodiversity” often make the argument that autism confers certain gifts on individuals, such as extraordinary mathematical ability or the ability to invent things, and that to “cure” them would be morally reprehensible. Some of the most extreme adherents of neurodiversity oppose any research in autism genetics, claiming the end result will be a prenatal test resulting in the widespread abortion of autistic fetuses. In essence, a genocide.
On my blog I attempt to dispute these notions by pointing out their failure to consider the long-term effects of autism on high-functioning autistics such as myself—let alone what should be done for the low-functioning autistics who cannot speak, or the “headbangers.” The debate is acrimonious; I am often attacked by the neurodiversity crowd and have been called all sorts of names. Once someone said I was like a Jew who helped the Nazis during World War II.
A cure for autism is not realistic in my lifetime. In fact, at my age it would be of limited value, as it is too late for me to accomplish the things I would have liked to academically, socially, and occupationally. But that does not stop me from wishing for a cure for future generations of children so they will not have to live like I have.
Jonathan Mitchell, a native Angeleno, writes a blog called Autism’s Gadfly.
11. Why the Supreme Court Could Side With Autism Activists in Fight vs. Vaccines
On Oct. 12, the U.S. Supreme Court will hear Bruesewitz v. Wyeth, a case that threatens to flood the federal court system with about 5,000 largely meritless lawsuits that claim vaccines cause autism. There just isn’t any decent evidence showing that vaccines cause autism. Yet because of the Supremes’ ruling in a different, unrelated case (Wyeth v. Levine), there’s a possibility that the court could plunge the judicial system down a science-free rabbit hole in which non-specialist civil judges will be forced to hear each and every one of these cases even though the law was specifically written to prevent that happening. The case is a Trojan horse for autism activists, but the Supremes may side with them anyway.
It’s complicated, so here’s the simple version:
In the 1980s, all but one manufacturer of the diphtheria–pertussis–tetanus vaccine went out of business after a few autism* cases went against the companies, even though a series of large-scale studies show that vaccines — even the ones containing the preservative thimerosal — do not cause autism. With the U.S. vaccine supply in danger, and American children newly threatened by lethal diseases that had been wiped out decades earlier, a new law created a federal vaccine court so that patients claiming vaccine injuries could get quick, no-fault compensation at a rate that would allow drug companies to continue producing vaccines. That law, the National Childhood Vaccine Injury Act of 1986, states:
No vaccine manufacturer shall be liable in a civil action for damages arising from a vaccine-related injury or death associated with the administration of a vaccine after October 1, 1988, if the injury or death resulted from side effects that were unavoidable even though the vaccine was properly prepared and was accompanied by proper directions and warnings.
As a piece of written English, the law is horrible: It starts by suggesting that manufacturers will never be liable even if the injury was “associated” with the vaccine. Then there’s a confusing bit suggesting some side effects are “unavoidable.” And it ends with the notion that those “associated,” “unavoidable” side effects occur even though the vaccine was “properly” made. Under this law, “properly” means passed and approved by the FDA. Thus, if the FDA allows a vaccine onto the market, vaccine claims are preempted — not allowed into the federal court system. If you think you’ve been hurt by a vaccine, you have to go to vaccine court to prove your case.
Here’s what happened after the law was passed, according to an amici brief by GlaxoSmithKline (GSK), Merck (MRK) and Sanofi-Aventis (ANY):
Allegations linking thimerosal to the onset of autism erupted in the early 2000s. Every government public health agency and reputable scientific body to address the question has rejected the hypothesis that thimerosal-containing pediatric vaccines ever caused or contributed to autism.
As of 2008, at least eight major studies had examined the effect of reductions or removal of thimerosal as a preservative from vaccines, and all demonstrated that autism rates failed to decline despite the removal of thimerosal.
Nonetheless, between 1999 and 2009, 5,600 claims relating to autism were filed in the Vaccine Court.
Of those, 718 cases have concluded without compensation — because there’s no evidence that the vaccines cause autism — and six test cases have all found that thimerosal does not cause autism. Nonetheless, 5,000 cases are still pending along with another 350 in various state civil courts.
The parents of Hannah Bruesewitz have come up with a clever argument as to why Wyeth’s diphtheria–pertussis–tetanus vaccine is to blame for her “autistic-like features.” They argue that because the specific batch that Hannah received was linked to two deaths and more than 60 adverse events, that it counts as evidence the vaccine was improperly made and thus not “preempted” by the 1986 law.
If this were a normal drug tort case it would have been laughed out of court. Unfortunately, the Supremes ruled in Wyeth v. Levine — a case about a migraine drug — that not all claims against drug companies are “preempted” just because the FDA has allowed them onto the market. People have a right to sue, if a drug caused injury because it was defective anyway. Following that logic, the Supremes could decide that vaccine cases are not preempted if they claim that the vaccine was defectively manufactured. In fact, that’s exactly what the autism activists are arguing in their amici brief.
You may still think it’s unfair that parents of autistic children can’t get their day in court. Even if the evidence is non-existent, and even if Congress already set up a system to deal with vaccine cases, surely they should still get a fair hearing? Bear in mind that under the current system, about 18 percent of all cases filed with the vaccine court do get some compensation. I know this because it’s buried as a footnote on page 14 of the autism activists’ own briefs.
*Change was made because autism was not claimed in these cases.
12. School District Seeks to Bankrupt Disabled Student's Family
HOUSTON - Dreams brought Kenneth Chibuogwu to America and in time determination brought many of those aspirations within reach.
"I worked hard. I came to this country with nothing," says Kenneth.
It is a country this father and husband have deeply embraced, along with its core convictions.
"If you don't stand up for something, you'll fall for anything," he says.
And what could be more worthy of battle than his first born son, Chapuka, "Chuka" for short a child who will spend each and every day of his life challenged with autism?
"This child was a gift from God," insists Kenneth.
Guaranteed by federal law a "free and appropriate education" for their son, Kenneth and wife Neka hoped the Alief School District would prove an able partner in helping Chukka reach his potential.
It didn't happen.
"When I went there I saw things no mother would want to see," says Neka her visits to Chuka's middle school.
"My wife went to observe, found him squashed in the corner and nobody cared," says Kenneth.
"There was nothing I could do but cry because I was so shocked that such a thing could go on in this country," added Neka of the repeated conferences with Alief administrators ending in stalemate.
In Texas when parents and educators can't agree on whether a school district is giving a disabled student all that the law demands the state offers a procedure called "due process" where a sort of education judge listens to all the evidence and decides the issue.
In May of 2007, using much of their life savings, Chuka's parents filed their case.
Instead of seeking compromise, Alief launched a full-blown legal counterattack alleging the case was "improper" and that the Chibuogwus "harassed" district employees during meetings.
"Nobody in this household harassed the school district. I feel that they harassed us," insists Neka.
"These people had been railroaded, these people had been maligned," says special education advocate Jimmy Kilpatrick who represented Chuka and his parents.
Drained and discouraged, Kenneth and Eka dropped their due process case and Chuka never returned to class.
The conflict could have ended there, but Alief Superintendent Louis Stoerner and then board president Sarah Winkler had other plans.
The District sued the economically distressed parents of a special needs child for every penny of the district's legal expenses, an amount, at the time approaching $170,000 dollars and now estimated at close to a quarter million.
"What I feel is that they are trying to bully me for asking for a chance for my son's life," says Kenneth.
Alief taxpayer and watch dog Bob Hermann sees the lawsuit as senseless and mean spirited.
"I don't know why we would spend taxpayers money to try and punish somebody who doesn't have the money and are probably going to win at the end of the day anyway," says Hermann.
Those who represent special needs families suspect a larger more sinister scheme.
"What they are trying to do is send a chill down parent's spine about advocating for their children," says Louis Geigerman, president of the Texas Organization of Parents, Attorneys and Advocates.
"Lets set some examples, lets hang a few of them at high noon right out here in the middle of the town square and show you what we do to people who want to advocate for their children," adds Kilpatrick.
"If I don't fight them, you know they are going to do it to other parents," says Kenneth Chibuogwu.
This past April after three long and expensive years of legal warfare a federal judge here in Houston issued his ruling. Alief I.S.D. was wrong and had no right under the law to collect legal expenses from Chuka's parents.
Instead of accepting the ruling, superintendent Stoerner and apparently the Alief School board have chosen to risk even more taxpayer dollars and appeal the ruling to the 5th Circuit.
At a board meeting, by phone and by e-mail Fox 26 news has repeatedly asked the Alief decision makers "Why" and have yet to receive an answer.
A district spokeswoman promised comment after the appeals court rules.
"We've almost lost everything trying to keep this up," says Neka.
"What basically there are trying to do is run me and my family on to the street," says Kenneth
While school expenses are generally available for public inspection Alief has attempted to block our opens records request.
FOX 26 News has however obtained invoices which show the district's taxpayers have compensated Erik Nikols and his Law firm Rogers, Morris and Grover as much as $12,000 in a single month for waging the three-and-a-half year courthouse campaign against the Chibuougwu's.
The meter, presumably, is still running.
"I know a lot of people have gained from this, a lot of people have been enriched by this," says Neka.
As for Chuka, he's now fourteen, attends no school and for five years hasn't received a single minute of the free and appropriate public education that is his right
Their child, his parents insist, has been thoroughly left behind.
13. Mother of Special Needs Children Took Own Life
The sudden death of a southern Colorado mother and her two children leaves a lot of unanswered questions.
Autopsy results are shedding some light into the gruesome discovery back on October 4th. Results released on Thursday show Rene Ogden shot herself. Her twin children, Chase and Olivia, were also shot to death. Colorado Springs police are not ruling this case as a clear-cut murder suicide just yet. Investigators say an arrest is still a possibility.
The bodies of Rene, Chase and Olivia were found Monday afternoon inside their home on Essex Lane in Colorado Springs. The children's father, Tommy Ogden, reportedly found his wife dead when he came home from work. Police later found the teens in separate areas of the home.
Detectives are looking into several pieces of evidence. Sergeant Steve Noblitt with the Colorado Springs Police Department said, "We're not going to jump to any conclusions at this point. We're going to continue to investigate in a joint investigation with the El Paso County District Attorney's office. There is still work to be done in this investigation."
Police questioned Tommy Ogden, but he was released. CSPD says the father has been cooperating from the beginning. Ogden is a former Ft. Carson soldier and has served two deployments in Iraq.
Misti Walker's past with Rene Ogden goes back to days when they both participated in an education-autism action group. "She was really involved in trying to help kids with autism, said Walker.
She says both of them understood that there are challenges and pressures of raising children with special needs. Walker never recalled any indications that Rene Ogden was having serious problems. That has her wondering what exactly pushed the mother of two to take her own life.
Experts say there are general warning signs to look for if you think someone may be considering suicide. "Agitation is a big one: change in personality: if people are generally easy going and they are irritable they snap at you," said Jodee Hankins with the Suicide Prevention Partnership. She says discovery can start with a simple conversation.
Colorado Springs has the second highest number of suicides in the nation.
There is help available. Here are a few resources available in the Pikes Peak Region.
Suicide Prevention Hotline: 596-LIFE
Suicide Prevention Partnership: 573-7447
National Hotline: 800-273-TALK
Pike Peak Mental Health :572-6330
-- Crisis Hotline: 635-7000
Health Resources & Referrals: 211
Editors note: TACA has been trying for years to secure funding for urgent parent support. If you know of a family experience distress due to an autism diagnosis please call TACA. Also available is 2-1-1 that provides local family services including emergency funding for support and counseling.
14. Neonatal Jaundice Linked to Autism
Reviewed by Dori F. Zaleznik, MD; Associate Clinical Professor of Medicine, Harvard Medical School, Boston and Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner
Full-term neonates with jaundice are at greatly increased risk of later being diagnosed with a disorder of psychological development, a Danish study found.
Jaundiced newborns had an almost 90% higher likelihood of subsequently having any psychological developmental disorder compared with neonates without jaundice (HR 1.87, 95% CI 1.58 to 2.21, P=0.001), according to Rikke Damkjær Maimburg, PhD, of Aarhus University in Denmark, and colleagues.
Moreover, those born at term with jaundice had a 56% greater risk of the specific diagnosis of pervasive developmental disorder -- a disorder on the autism spectrum -- than those without jaundice (HR 1.56, 95% CI 1.05 to 2.30, P=0.028), the researchers reported in the November issue of Pediatrics.
Neonatal jaundice typically is caused by increased bilirubin production and inadequate liver excretory function.
Exposure to high levels of bilirubin is neurotoxic in very young children and can be fatal or associated with permanent sequelae.
Recent research also has suggested that even moderate bilirubin exposure in very young children can be harmful, possibly leading to impairments in their development.
In an earlier case-control study, Maimburg and colleagues found a nearly fourfold increased risk of autism among children who had neonatal jaundice.
To further explore this link, along with other possible contributory factors, the Danish researchers conducted a population-based study that included all 733,826 children born in that country between 1994 and 2004, analyzing data from the Danish Medical Birth Register.
A total of 35,766 children had been diagnosed with neonatal jaundice, while 1,721 were given a diagnosis of a disorder of psychological development during childhood.
They found that jaundice was more common among boys, infants born preterm, infants with congenital malformations, and low-birthweight infants.
After stratification for term versus preterm birth, and adjustment for factors such as maternal smoking, birth weight, and gender, the association of neonatal jaundice and any disorder of psychological development was statistically significant for infants born at term (HR 1.29, 95% CI 1.06 to 1.56, P=0.011), the researchers reported.
In contrast, preterm infants were not at risk (HR 0.88, 95% CI 0.64 to 1.21, P=0.437).
"The difference in risk for term and preterm children might suggest that brain development undergoes a sensitive period with special vulnerability to bilirubin exposure at ~40 weeks of gestation," they observed.
Another possible explanation for the difference in risk between term and preterm infants is that those born before 37 weeks routinely are hospitalized, so the bilirubinemia would be detected and treated promptly.
Risks also were increased for certain specific subtypes of disorders of psychological development. The adjusted hazard ratio for disorders of speech and language was 1.56 (95% CI 1.01 to 2.40, P=0.46), while the hazard ratio for mixed developmental disorders was 1.88 (95% CI 1.17 to 3.02, P=0.009).
Further analysis of children born at term and exposed to bilirubin found other specific factors linked to autism:
- Birth between October and March, adjusted HR 1.97 (95% CI 1.23 to 3.17, P=0.005)
- Parous mother, adjusted HR 2.29 (95% CI 1.44 to 3.63, P=0.001)
Birth during the winter months, according to the researchers, may influence the development of neonatal jaundice because exposure to daylight helps decrease bilirubin levels.
"These results may reflect the different exposures to daylight but also the fact that children born in the winter period are more exposed to other contributing agents, such as infections," they wrote.
And as to why primiparous women were less likely to have jaundiced infants, possible reasons include their lower levels of antibodies and the fact that firstborn children in Denmark typically remain in the hospital for several days, and hyperbilirubinemia would be detected more quickly.
The researchers noted that their results may have been underestimated, because the data on neonatal jaundice were obtained from the Danish National Hospital Register and reflect only the severest cases.
"Additional evidence to distinguish the genetic and environmental components is needed to explain the association between neonatal jaundice and autistic disorders," they concluded.
15. Should Vaccines Be Exempt from Product Liability? Will Supreme Court Protect Business or You?
The vaccine landscape is quite different in 2010 from 25+ years ago, when the vaccine court was created. Vaccines are now a major growth opportunity area for pharmaceutical companies. Like our food, energy, healthcare, who comes first, the consumer and his/her safety or the corporation? With product liability comes corporate caution - even if borne out of a need to protect profits. Do you feel safe knowing that Merck and friends bear no financially liability for the vaccines the government mandates for your children? Or that your elderly parents receive as a matter of course? We're watching the Supreme Court decision carefully.
The safety of vaccines is at the heart of a case expected to be heard on Tuesday by the United States Supreme Court, one that could have implications for hundreds of lawsuits that contend there is a link between vaccines and autism.
Hannah Bruesewitz suffered harm from a vaccination as an infant, her parents say.
At issue is whether a no-fault system established by Congress about 25 years ago to compensate children and others injured by commonly used vaccines should protect manufacturers from virtually all product liability lawsuits. The law was an effort to strike a balance between the need to provide care for those injured by vaccines, some of them severely, and the need to protect manufacturers from undue litigation.
Under the 1986 National Childhood Vaccine Injury Act, such claims typically proceed through an alternative legal system known as “vaccine court.” Under that system, a person is compensated if their injury is among those officially recognized as caused by a vaccine. That person, or their parents, can choose to reject that award and sue the vaccine’s manufacturer, but they then face severe legal hurdles created by law to deter such actions.
The case before the Supreme Court is not related to autism. But the biggest effect of the court’s ruling, lawyers said, will be on hundreds of pending lawsuits that contend a link exists between childhood vaccines and autism. Repeated scientific studies have found no such connection.
Also, in several test case rulings over the last two years, administrative judges in vaccine court have held that autism-related cases did not qualify for compensation. During the last decade, about 5,800 of the 7,900 claims filed in vaccine court, or about 75 percent, have been autism-related, federal data show.
Federal data shows that $154 million was paid in fiscal 2010 to 154 claimants involved in vaccine court proceedings. That figure was significantly higher than in preceding years and reflected several unusually high awards, officials involved in the program said...
16. Case tests vaccine court vs. state-law claims
WASHINGTON — Supreme Court justices struggled Tuesday with how to protect children from potentially dangerous side effects of vaccines yet avoid exposing drugmakers to a flood of groundless litigation.
No consensus emerged during robust arguments in the Pennsylvania case bought by the parents of a child who suffered seizures after a vaccination.
The dispute tests whether a 1986 law establishing a special U.S. court to review vaccine injuries overrides state-law claims against drugmakers for design defects in a vaccine. A ruling could affect numerous lawsuits seeking damages, including those from parents alleging a link between vaccines and autism.
Lawyer Kathleen Sullivan, representing the pharmaceutical company Wyeth in Tuesday's case, which is unrelated to the high-profile autism disputes, invoked those cases as she urged justices not to rule against Wyeth.
"There are 5,000 claimants in vaccine court now who claim there is a relationship between the mumps, measles and rubella vaccine and autism," she said. "Congress was worried about episodic waves of fear about vaccines leading to future litigation."
On the other side, lawyer David Frederick urged the justices to focus on Russell and Robalee Bruesewitz, whose daughter Hannah began suffering debilitating seizures in 1992, when at age 6 months she was injected with Wyeth's vaccine for diphtheria-tetanus-pertussis.
MEET THE CLASS: Get to know the Supreme Court justices
"We are talking about trying to eliminate some of the most horrifying and horrible incidents," he said, urging the justices to rule that parents can go to regular court.
The Bruesewitzes lost in the special court designed to hear vaccine-injury claims. That panel said the parents had failed to show the seizures were caused by the vaccine, as they had claimed.
The Bruesewitzes then filed a lawsuit based on Pennsylvania law. But a U.S. appeals court said the 1986 vaccine-injury law overrides state claims of a design defect. The ambiguously worded act says no "manufacturer shall be held liable in a civil action" for injuries "from side effects that were unavoidable."
Frederick said Wyeth could have given a safer vaccine but had not adopted it because of costs. Wyeth, now part of Pfizer, withdrew the drug Hannah took from the market in 1998.
STUDY: More evidence that vaccines don't cause autism
Chief Justice John Roberts said Congress' establishment of a special court and compensation could mean it "didn't want to allow state-law claims."
Frederick said Congress did not seek to bar all claims, but rather wanted the case-by-case review.
Under questioning from Justice Anthony Kennedy, Frederick said Congress wanted most claims in the special vaccine court and allowed lawsuits on state grounds only in "rare circumstances like the problem we have here where the vaccine court awards nothing."
Kennedy noted the "tremendous expense" of litigation to manufacturers.
Justice Stephen Breyer asked whether more potential lawsuits might drive vaccines from the market and cause children to die. Frederick said most people claiming injuries accept the special vaccine court's verdict, so manufacturers would not be facing significant new liability. Sullivan said the law arose after "litigation that threatened to drive manufacturers out of the business."
Justice Sonia Sotomayor asked why, then, Congress did not clarify that the vaccine court was the exclusive route for remedies. She also asked whether drugmakers would have any incentive to design better drugs if they are only in a special court that limits liability.
The U.S. government is siding with Wyeth. Because of the government's role, Justice Elena Kagan, who had been U.S. solicitor general, did not take part. Only eight justices heard the case and could split 4-4. If that happens, the ruling against the parents would stand, but no standard for other cases would be set.
17. Using the iPad to Connect
Parents, Therapists Use Apple Tablet to Communicate With Special Needs Kids
The rise of mainstream tablet computers is proving to have unforeseen benefits for children with speech and communication problems—and such use has the potential to disrupt a business where specialized devices can cost thousands of dollars.
The rise of mainstream tablet computers like the iPad is proving to have unforeseen benefits for children with speech and communication problems-and such use could potentially disrupt a business where specialized devices can cost thousands of dollars. WSJ's Jennifer Valentino-DeVries discusses on Digits.
Before she got an iPad at age two, Caleigh Gray couldn't respond to yes-or-no questions. Now Caleigh, who has been diagnosed with cerebral palsy, uses a $190 software application that speaks the words associated with pictures she touches on Apple Inc.'s device.
"We're not having to fight to prove to people that she is a smart little girl anymore, because it's there once they see her using the iPad," said Caleigh's mother, Holly Gray, who said her daughter can use the tablet to identify colors or ask to go outside.
The software, called Proloquo2Go by a company called AssistiveWare BV, is one of a growing number of apps aimed at people with speech difficulties developed for Apple's gadgets. Some of the apps offer images that users can press to make the sound of a word; others lead students through stories to teach them basic speech patterns.
Companies are also planning such apps for upcoming tablets that run Google Inc.'s Android software.
Apple Chief Executive Steve Jobs said in an interview that he hopes the easy-to-use design of the iPad has helped children with special needs take to the device more quickly, but that its use in therapy wasn't something Apple engineers could have foreseen.
"We take no credit for this, and that's not our intention," Mr. Jobs said, adding that the emails he gets from parents resonate with him. "Our intention is to say something is going on here," and researchers should "take a look at this."
The iPad offers children such as Caleigh the opportunity to communicate in an affordable way.
Specialized speech devices from companies like DynaVox Inc. and Prentke Romich Co. range from about $2,500 on the low end to $15,000 for a device that uses the eye movements of people who are paralyzed to allow them to select words on a screen. Most are about $7,000, near the amount that Medicare covers for such hardware.
The price of the devices covers the materials required to make them durable; extensive service that is often needed for disabled patients; as well as complicated software, said Ed Donnelly, the chief executive of DynaVox.
Caleigh Gray and her mother, who live in Dallas, use the iPad for communication and learning.
He said the iPad might be an alternative for a "very small segment" of people who buy his firm's devices, but noted DynaVox this month released a new touch-screen product, called the Maestro, that resembles consumer tablets. That device costs $7,820.
"Like any specialist device our problem is we just can't get economies of scale. We maybe sell thousands a year," said Russell Cross, the director of clinical applications for Prentke Romich. He said his company's business hasn't suffered as a result of mainstream devices.
"It's not like people have suddenly stopped buying [these] products," he said. "We've always been very aware that the need for [speech] devices is far greater than actual supply."
The dedicated devices are covered by most government and private insurers, but the iPad—which costs between $499 and $829—and other computers generally aren't.
Medicare doesn't cover mainstream tablets, even though they might cost less than dedicated devices, said Andrea Abramovich, a speech pathologist and instructor at the State University of New York at New Paltz.
"There's a hotbed of problems it would open up" because tablets could be used for nonmedical purposes, she said.
Many of the speech apps have been available on traditional computers and smaller touch-screen devices, but parents and therapists said tablets offer more options for children.
"It's portable and something he can carry, and yet it's large enough to be accessible," said Shannon Rosa, an advocate and writer whose nine-year-old son, Leo, has autism and uses an iPad. "There's no cursor analogy he has to work through; it's a direct connection."
The iPad also helps remove some of the social stigma. Devices that are made specifically to help people speak tend to be "bulky," said Bill Thompson, a school psychologist in California with the Orange County Department of Education, who has made several apps to help children with speech problems.
“We were an early adopter of this technology for our middle school age child with multiple disabilities. He LOVES his iPad! We're waiting now for publishers to catch on and create apps that focus on life skills and social stories for older kids with disabilities. Hurry up! ”
"But now you might have a kid who struggles with bridging the social gap have kids come up and want to see what they're doing. It really has a 'norming' quality," Mr. Thompson said of the iPad.
Speech therapists said there are a few changes they'd like to see to the iPad to make it more friendly for children with disabilities, including the ability to have parents lock the apps so that children can't delete them, or adjustments to make it less likely that people with motor problems would open apps accidentally.
Researchers at the Massachusetts Institute of Technology are planning to study what else could be done to make such tablets better for people who have either autism or speech difficulties.
The devices, for example, could use location data to deliver options for speaking that depend on a particular place—say, a restaurant or a church. Or they could take advantage of technology that can simulate speech based on just a few syllables of a person's voice, said Matthew Goodwin, the director of clinical research at the MIT Media Lab.
Write to Jennifer Valentino-DeVries at firstname.lastname@example.org
18. Parents want research on vaccine safety
ANN ARBOR, Mich., Oct. 12 (UPI) -- Nine out of 10 U.S. parents rank vaccine safety and the safety of medicines as the most important topics in children's health research, a survey indicates.
The C.S. Mott Children's National Poll on Children's Health asked 1,621 U.S. parents to rate the importance of different types of medical research for children's health. The survey indicates:
-- 89 percent say vaccine safety is their top research priority.
-- 88 chose medication safety and effectiveness.
-- 72 percent say research should be done on things in the environment that could lead to health issues.
-- 67 percent say foods that might protect against cancer.
-- 66 percent say new treatment for rare childhood diseases.
-- 64 percent say research is needed on cancer-causing foods.
-- 64 percent say new treatments for common childhood illnesses.
-- 46 percent say research is needed for leading causes of injuries.
"Parental concerns about the safety of vaccines have increased markedly over the last decade, due to alleged but later disproven links between vaccines and autism and related concerns about mercury and other preservatives used in vaccines," Dr. Matthew Davis, director of the poll and associate professor of pediatrics and internal medicine at the University of Michigan Medical School, says in a statement.
The survey was conducted Aug. 13 to Sept. 7. The margin of error is 2 percentage points to 3 percentage points, depending on the question.
19. Temple Grandin's Logical Mind on Early Intervention, Vaccines and More
Below is a wonderful interview with Temple Grandin on a variety of topics. She will be presenting at the All Ages and Abilities Autism/Asperger's Conference this weekend in New York City. From The Charlotte Observer.
At the Emmy Awards ceremony in August, Temple Grandin took the stage several times as the HBO movie about her life grabbed seven awards.
Dressed in rancher attire with a red scarf and a silver belt buckle, Grandin gave the film's executive producer a long hug.
For someone who started life unable to bear a hug from her parents, the embrace was a sign of how far she's come.
Grandin, now 63, has autism.
The HBO movie, starring Claire Danes, tells how Grandin, a Boston native, defied the predictions of 1950s specialists who said she should be institutionalized. As a 3-year-old she was unable to speak or make eye contact. But she grew up to become a renowned animal scientist who helped create guidelines that have become a standard in the meatpacking industry. For example, she designed curved corrals intended to reduce stress on animals being led to slaughter and has taught workers how to herd animals without excessive electrical prodding.
This week, she will be in Charlotte to speak at a national conference on autism and Asperger's syndrome. (Tickets for her talk are sold out.)
Grandin is also the subject of the title story in "Anthropologist from Mars," a best-selling book by acclaimed neurologist Oliver Sacks, and of a BBC documentary, "The Woman Who Thinks Like a Cow."
Grandin spoke to the Observer by telephone. Here are edited excerpts:
Q. What's your best advice for parents of children with autism?
I can't emphasize enough the importance of early educational intervention... (As a child) I had 20 or 30 hours a week of teachers and people working with me... If you have a kid who is 2 years old or 3 years old and there's no speech, just doing nothing (is) the worst thing you can do...
If you're in a situation where you can't get any services, get some grandmothers, get some students to start working with that kid. Teach them nursery rhymes. Do a lot of one-on-one teaching. Play games with them. Teach them the alphabet. You can't just let them sit in the corner rocking.
Q. Is it realistic to expect most people with autism to accomplish what you have?
Autism is a very big continuum. At the one end you've got somebody that's going to remain nonverbal and have problems... If you work with them and train them, they can do simple things... living skills like dressing themselves, feeding and shopping.
At the other end of the continuum... you get into the mild, Asperger type ... We called them geeks and nerds. They're the ones that might be good at science but they're not very social. And a lot of those people, they run Silicon Valley.
Q. I have read that you don't have emotions. Is that true?
Well, that's not true. I have emotions... but they're not complicated. They're simple. I can be really happy, really angry, really sad. When kids teased me, it hurt a whole lot.
Q. The HBO movie shows how at 16, you visited your aunt's cattle ranch in Arizona and discovered you had a lot in common with animals. Describe how you got the idea to build your own "hug machine."
(When I was little) I couldn't stand to be touched. I wanted the nice feeling of being hugged... but it was sort of like a tidal wave of stimulation... When I got into puberty, I started having horrendous anxiety attacks. My nervous system was looking for danger when there was no danger.
(At the ranch), I watched cattle go into the squeeze chute... It holds cattle still for veterinary work... Some of the cattle just kind of relaxed. So I got in the squeeze chute with the cattle, and I found that pressure calmed me... I invented a device very much like a squeeze chute...
(My mother) wanted to get me out doing different things... A lot of autistic kids don't want to do new stuff... You've got to encourage them.
Q. You're described as a visual thinker. What does that mean?
The movie does a very good job of showing how my mind works in pictures... There's a scene where a whole bunch of shoes come up in rapid succession... That's how I think. Imagine a PowerPoint presentation and you just click through the slides really quick.
Q. You have said you credit autism for your achievements. Can you explain?
I think autism helped me in my work with animals. I'm an extreme visual thinker. Also I think very much in details. Animals think in details, think in pictures, think in audio clips, think in touch sensation. They don't think in language... (A cow) is going to recall a picture of something that's good or bad. A feed truck - that's something good. A certain man wearing a striped shirt is bad because he hit (the cow) in the past. That's how an animal responds to things.
Q. In recent years, many parents have blamed vaccines for causing autism. That theory has been discredited by recent research. What do you think?
There's one study that still hasn't been done. There's a type of autism where the child gets language... can say a few words... and then loses it. There's a regression at about 18 months or 2 years. That subgroup needs to be studied separately. Until that study is done, the book is not closed.
Q. So you think it's possible vaccines could play a role?
I'm leaving that open. That study has to be done. I've brought that up with some of the top experts and they get very silent. That's all I'm going to say about it.
Q. What kind of feedback are you getting from the movie and your books?
People write me e-mails and things like that, and they tell me that they've been encouraged. I had one mother write to me and say "My son went to college because of your book." That makes me really happy.
20. Special needs more likely for boys, study finds
The study found boys and girls were likely to have different types of SEN
Almost one in four primary school boys in England has special educational needs (SEN), a government report finds.
More than 41,000 primary school boys (2%) have a statement of needs and 489,250 (23.4%) have unstatemented needs.
This compares to 15,600 SEN girls (0.8%) with statements and 269,890 girls (13.5%) without a statement.
Last month Ofsted said thousands of pupils were wrongly labelled as having special educational needs.
All these pupils required, inspectors said, was better teaching and support.
The Ofsted report found as many as half of all pupils identified for School Action, the lowest SEN category, would not be identified as having these needs if schools focused on improving teaching and learning.
SEN pupils at 21%
The latest study, published by the Department for Education (DfE), examined the numbers and characteristics of children with SEN.
The findings show the number of pupils with SEN in England increased from around 1.53 million (19%) pupils in 2006 to approximately 1.69 million (21%) pupils in 2010.
Boys were two and a half times more likely than girls to have statements at primary school, the report said.
And at secondary school, they were nearly three times more likely to have statements compared to girls.
The report found that boys and girls were likely to have different types of SEN.
Boys with statemented SEN were more than twice as likely to have behavioural, emotional and social difficulties or autism than girls.
In total, 26,170 boys (17.2%) with SEN statements had behavioural, emotional and social difficulties compared with 3,590 girls (6.2%).
Girls with SEN statements were more than twice as likely to have profound or multiple learning difficulties or hearing problems compared with boys.
Children's minister Sarah Teather said: "Pupils with SEN are not getting the support they need to succeed and are falling behind as soon as they start school.
"It is not right that only 5% of young people with statements of SEN go on to higher education.
"We must change the system so that having SEN or a disability does not predetermine a child's future."
21. Flu Vaccines: Should They Be Mandatory For Health Care Professionals?
The American Academy of Pediatrics issued a statement on September 13, 2010, supporting a policy of mandatory flu vaccination for all health care workers (allowing for medical exemptions, of course). They state that it is "ethically justified, necessary and long overdue to ensure patient safety." I agree that the flu vaccine is important. I agree that it is useful for health care workers to get a flu vaccine in order to lower their chance of catching the flu and passing the illness to patients. A doctor, such as myself, would be contagious for a day or two before even feeling sick. Then when I did get sick, I'd likely keep working if my symptoms were minor. I'd wash my hands and wear a mask, but I'd still be exposing some patients. Of course, with a fever or severe flu symptoms, I'd take a few days off (like last year, when I caught the H1N1flu, I took a Friday off and was back to feeling normal by Sunday). So I'm not arguing that the flu shot isn't important for health care workers. Those who choose to not be vaccinated should take some extra responsibility to take time off work if they do catch the flu.
What I take exception to is the thought that the government or medical boards would make it mandatory. Absolutely, without exception, lose-your-license-if-you-don't-comply, mandatory. That makes me shiver. I could understand such a policy if the flu vaccine was 100 percent harmless to every single person that got one. But it isn't. There are very rare but very severe, even fatal, reactions to the vaccine every year. There are a lot more fatalities from the actual flu then there are severe vaccine reactions, but nevertheless the vaccine does have some element of risk.
Here is just an example of what one vaccine product insert lists as reported (but not verified or proven) reactions to flu vaccine: bleeding from low platelet blood cell counts, severe anaphylactic allergic reactions, Guillain-Barre Syndrome (temporary paralysis), seizures, inflammation of the brain and spinal cord, dysfunction of the nerves in the eyes, face, or arm, inflammation of blood vessels, shortness of breath, Stevens-Johnson syndrome (severe allergic reaction involving the skin and some organs), and chest pain.
I find it interesting that less than half of health care workers get a flu vaccine each year. Why is that? Is it because they've all read the vaccine product insert and don't like that long list of possible, but unlikely, side effects? Or do they just not get around to it for no particular reason? I don't know.
In my opinion, no government has the right to force anything potentially dangerous on anyone. We should all have the freedom to choose between a flu vaccine and risking the disease. Patients who come into a doctor's office or hospital take a small risk every time, but not primarily from the doctor. There's far more risk of catching something from another patient. So, if this policy passes, what's next? Denying hospital admission or even health care to anyone who doesn't get a flu vaccine? After all, that patient would be putting others in the hospital or office at risk, and we can't have that. And why stop at the flu vaccine? Let's make all vaccines 100 percent mandatory for everyone! Hey, why don't we just burn the constitution?
Dr. Bob Sears
Pediatrician and author of "The Vaccine Book: Making the Right Decision for Your Child"
22. National Autism Association Applauds Interagency Autism Coordinating Committee’s Formation of Safety Subcommittee
Washington, DC - The National Autism Association (NAA) is applauding the Interagency Autism Coordinating Committee (IACC) today following the Committee’s decision late Friday to instate a subcommittee dedicated to safety issues within the autism community. Members voted unanimously to establish the subcommittee that will work to address the rising number of fatalities and injuries associated with autism-related wandering. Other safety issues that may be addressed include restraint and seclusion in schools, bullying, victimization and domestic crises.
The Committee’s decision came following a presentation by NAA Board Chair Lori McIlwain and President Wendy Fournier, who provided information to the IACC about a spate of recent fatalities associated with autism-related wandering. Their request for the formation of a safety subcommittee was combined with recommendations outlining the need for medical coding specific to autism-related wandering, data collection, greater access to tracking technology, first-responder training, and federally-backed safety information for families.
The absence of an emergency broadcast alert system for minors with cognitive impairments was also addressed by NAA. Federal guidelines established for AMBER Alert criteria currently do not include at-risk minors prone to wandering as a result of brain injury, disability or other cognitive impairment. States that have adopted the “Silver Alert” Emergency Broadcast Alert System for at-risk seniors with dementia oftentimes do not allow minors with cognitive impairments into its criteria.
The Committee’s vote to form a safety subcommittee had parents and advocates applauding in the background as IACC members spoke about the urgent need for action, preventative measures and emergency response that would work to reduce and prevent fatalities and injuries among those with autism spectrum disorders.
“We are extremely grateful for the IACC’s decision to take immediate action in addressing these critical safety issues within the autism community,” stated Wendy Fournier. “We also extend our thanks to Sheila Medlam, who bravely spoke during the public comment period about the recent loss of her 5-year-old son Mason in a tragic wandering incident.”
NAA was most encouraged by the possibility of getting a medical diagnosis code established for autism-related wandering. According to Board Chair Lori McIlwain, “Children and adults within the autism community need for wandering to be recognized as a medical condition. Diagnostic coding for autism elopement will be useful in prompting critical discussions between physicians and caregivers – it will also raise the seriousness level of the condition among first responders and school administrators, and possibly provide greater caregiver access to tracking technology.”
For more information about autism-related wandering prevention and response, visit www.awaare.org.