By Sharisa Lewis - Dallas Special Needs Kids Examiner
When moms report recovering their children from autism, it provides a mixture of hope and discouragement for other parents who haven't had the same success.
A local Dallas mom is releasing a book about her journey to recover her son from autism called 'Raindrops on Roman.'
Roman's mom, Elizabeth Scott, quit her job when her son was diagnosed with autism and created her own treatment plan. She has an elementary school teacher background and used her experience to teach her son 10 hours a day. She taught him language, interaction and behavior with a "skills and drills" approach.
Her story offers hope to many parents pushing to recover their own children from autism.
But, it also offers discouragement. Not all children are alike on the autism spectrum, so each one may respond differently to treatments and therapies.
Also, how many other autism parents already have the elementary teacher training? And not many have the resources to quit a job or focus 10 hours a day on one child.
Yet, there are bits of information in every recovery story that can benefit other kids with autism.
Jenny McCarthy has also been a strong advocate for parents of autism children. She recovered her son for autism and also has a new book out on her son's treatment.
While we can learn from every recovery story, there has to be caution that there is not one solution for all children with autism. We can all gather bits of info from each of these authors, but it doesn't mean it is the fix-all for every child with autism.
As many of my readers know I have been focusing my attention on the HPV vaccine, Gardasil, manufactured in the United States by Merck Pharmaceutical Co. A similar vaccine, Cervarix is manufactured by GlaxoSmithKline and administered throughout Europe. I am a member of the most active Gardasil board on the Internet called "Let's Talk About Gardasil." It is because of interactions with the Gardasil Moms and Gardasil Girls that I have been able to come to this conclusion. Let me explain how and why.
I have spent hours on the phone with many of Gardasil moms. On one occasion a mom called and asked me to speak to her daughter because she was having a very bad day. This young woman is in pain every day but on this day was experiencing pain that was so intense that she had gotten to the point where she could not stand it anymore. She had told her mom that she wished God would take her already. Of course I told this distraught mother that I would be honored to speak with her daughter.
During the conversation I shared with this young woman how she has been an inspiration to her family, church and the other people on the Gardasil board. I spoke to her about what she will be able to accomplish in the future when she gets better. I also promised her that some day we will visit the White House and maybe even talk to the President. That made her chuckle and she said, "I would like that," in a quiet voice because her pain magnified all sound.
She then asked me "why did this have to happen?" It was then that I knew the answer and I told her that "the Gardasil Girls have given the silent faces of Autism a Voice for the first time in history. These children have not mastered speech so when they become autistic they cannot tell their moms they have a headache or that their stomach hurts or they cannot feel their legs or tingling in their legs."
It was at this point that all my research into Gardasil took on a new meaning, a new purpose and a new goal. My goal was to prove that autism does not exist. I wanted to prove by using the voices of the Gardasil girls that Autism is only brain damage because of excessive body burden of aluminum in vaccines.
I spent 10 to 14 hours a day over a period of many weeks researching everything I could to see if the information on vaccinations, aluminum and other heavy metals trackbacked to support this theory. I read personal stories of parents of autistic children and compared them with the stories of the Gardasil girls. I read hundreds of VAERS (Vaccine Adverse Event Reporting System) reports. I read articles about brain damage, reports about aluminum toxicity and all kinds of studies on these topics. I even went so far as to calculate potential toxicity from aluminum prevalent in the environment in combination with the toxic aluminum load found in single and/or multiple vaccines administered at the same time.
After I did all of this I sat back and looked at everything that I had researched with the documents, spreadsheets and graphs that I created during the process. The connection was there. Looking at the numbers and the side effects side by side, one could notice the direct relationship between the two — the higher the dose of aluminum — the more the severe the side effect.
I presented my findings to my colleague, women's health advocate and broadcast journalist Leslie Botha. Intrigued by the data, Botha suggested that I expose my findings on her radio show on KRFC FM , a community radio station in Fort Collins, CO, audio streamed at www.krfcfm.org , 6:00PM Mountain Time. I proposed that the February 16 show be titled "Gardasil Girls Give the Silent Faces of Autism a Voice." Prior to the show, I alerted the Gardasil and autism communities through various organizations, Internet boards and chat rooms to make them aware of the upcoming radio interview and topic.
At my suggestion, during the first 15 minutes, Botha quickly interviewed five girls from around the country who were injured by what they believe to be the Gardasil vaccination. They stated their name, age, side effects and briefly spoke about how this vaccine changed their lives. It was amazing and distressing to hear all five girls describe the same symptoms that all appeared within a short time frame after receiving the injection.
Botha then interviewed the father of an 18 year old who became autistic at 2 ½ years old after a round of childhood vaccinations. Throughout this segment listeners could hear the uncontrollable and constant squawking sounds the man-child was making in the background as his father shared his story.
After that segment, I introduced my theory: what both the Gardasil girls and this "autistic" man-child were experiencing were adverse reactions due to the aluminum used in the vaccines and it was causing brain injury.
Now I was faced with the task of backing up my theory. I used data from the VAERS reports. I was able to describe the amounts of aluminum infants are exposed to and compared those adverse events with the data reported from the Gardasil vaccine. I referred to personal stories from the autism community and compared them to the stories from the Gardasil girls. I also used excerpts from peer reviewed articles and reports from the EPA (Environmental Protection Agency) on the safety standard set for aluminum exposure. Interesting to note, that each vaccine fits within the EPA standards for aluminum but when multiple vaccines are administered at the same time, the exposure levels supersede those limits. Add to that unknown amounts of aluminum in an individual's environment (household products, deodorants etc.) and the potential exposure levels exceed EPA standards. I do want to make note here that the EPA standard of 0.85mg applies to an adult vaccine and infant vaccine.
By the conclusion of the show I was able to ascertain that autism was a medical condition from vaccine-related brain damage and that SIDS (Sudden Infant Death Syndrome) the term used for infant death by "unknown causes" was the same as the autopsy reports of the Gardasil girls who passed from "unknown causes" shortly after receiving the Gardasil vaccine.
This is important to state before some scientist creates terminology for the 'unknown medical condition' the Gardasil girls experience in an effort to cover up what we now know is brain damage. For far too long, the parents of autistic children who related their baby's neurological damage to the childhood immunizations were told that they were wrong. The medical community told parents that their children have a condition known as "Autism" and totally unrelated to vaccinations. We must not let this happen to the Gardasil girls.
The reason I am sharing all this is because of the April 3 Larry King Live show on CNN titled "No Scientific Link Between Autism and Vaccinations." Botha was the first to call and alert me that the topic of the show was about childhood vaccinations and autism. I am going to have to admit that I do not watch much television but I now know that many Gardasil moms do. I received phone calls from a few of them to tell me to turn on the show because a comment was made that the Gardasil vaccine will be pulled from the market shortly. After that we were all on the phone calling Gardasil moms around the country to let them know about the comment and the interview. Unfortunately by that time I missed a substantial part of the show, but I was able to record the replay.
I called several of my moms and gave them the news. One mom was almost in tears at the news about Gardasil. She said, "This is wonderful soon no more girls will be hurt." This was a great day.
You have no idea how happy this show made me. I felt as if I had just won a 30 million dollar lottery or something.
I listened to Jenny and Jim talk about Evan and how they brought him back. I was happy to hear them say on the air that they were not anti-vaccine but safe vaccine advocates just like me. It just warmed my heart but the comment that made me jump up and down in my seat was and I quote; "HANDLEY: Larry, we know with conviction that vaccines cause brain injury, it's on the Health and Human Services Web site. We're looking for something that's caused this epidemic. It went from one in 10,000 in the 1970s to less than one in 100 today in many states. "
My heart was just singing at this point and then further in the interview this was said, "HANLEY: The AAP doesn't listen at all, Larry. They never look at recovered children. They never look at recovered children. They rubber stamp every vaccine on the schedule. Dr. Fisher never answered why so few countries have picked up varicella, flu, rotavirus. Meantime, AAP rubber stamps every vaccine, like Gardasil, which is damaging teenage girls right now, which will likely be pulled from the market very soon. There is the AAP rubber stamp on that vaccine."
Listening to that statement brought to mind the girls and moms on the board and that there are only two thoughts they express. One getting their daughters treatment that works and stopping other girls from getting the vaccine because of the pain and suffering they are going through. I almost cried because of all the young girls and young women that can be saved. And I mean saved because if you have not experienced the sadness and pain that these moms and daughters go through daily, you cannot say that getting the shot is better than cervical cancer.
What gets me is that cervical cancer is preventable with early detection via pap tests. It is my belief that we need to focus on detection and prevention instead of putting genetically engineered vaccines into the bodies of young girls and women. As Dr. Harper said that we do not know what the long term side effects are yet and mandating this vaccine is nothing more than an experiment.
I want to bring up another point that was made on the show by "Dr. Bernadine Healey, former president of the American Red Cross. " I think one has to listen to the families of these children. I have always believed, you listen to the patients and the patients will teach. I think there are many legitimate concerns that families have. And I honestly believe that the focus that we have on autism today and the embarrassing recognition that we know so little about it, in terms of what causes it, in terms of how to treat it, in terms of whether it's dynamic, whether it's structural, I think that says that we have neglected this disease for all too long in the face of this growing epidemic.
"We have got to focus on it and we have got to listen to families. And I think that environmental triggers in the context of a genetic predisposition make a lot of sense. But we don't have the foggiest notion of what those environmental triggers are. Vaccines might be one of those components. Let's respect that and let's investigate it. And I don't think it's been fully investigated."
The families of the Gardasil Girls have been ridiculed by doctors; they have been told that their daughter's conditions are all in their head. Some doctors have even put girls in a psych ward. This inability of doctors in their listening skills is not only about autism but it is about Gardasil as well. I have heard stories from moms that would make you cry or angry because of the condescending attitude they have received from medical professionals.
I loved how Healey described this growing epidemic. If you look at Gardasil you will see the epidemic is not only the autism community. In the UK it was reported that 1,500 girls experienced an adverse event to Cervarix in the first 6 months since it was introduced to the market. This HPV vaccine contains 0.5mg aluminum. In the United States there are now over 15,000 adverse accounts of girls affected by Gardasil (with an estimated 1% of the population reporting). Gardasil contains 0.225mg aluminum and L-Histidine which is an amino acid. (I am presently looking at the possibility of molecular mimicry to this amino acid is part of the cause of the side effects.) These HPV vaccines are causing an epidemic around the world similar to childhood immunizations and autism. It is all brain damage and it is all vaccine related in my opinion.
Healey goes on to state that she does not know what those environmental triggers are. I thought I was going to fall out of my seat. This is not rocket science people. I found what could be the environmental triggers. Look at the amount of aluminum in our diet, our water, our vaccines, etc. You will see the trigger. It is as plain as the nose on your face. At least that is my opinion. Sorry, I get rather passionate about all this.
The next quote gave me pause because this is a subject that I have researched extensively and that is the approval document from the FDA on Gardasil. Check this out.
FISHER: We hardly rubber stamp any vaccine. The American Academy of Pediatrics listens very closely before a vaccine is recommended for use. It goes through extensive trials. It goes through extensive information. All of that information is reviewed very quickly. It's both efficacy and safety information.
There's never a rubber stamp. We work very closely before, while the vaccine is being tested to see if it works, it is safe? And only if it's been determined to be safe and effective is it recommended for use. It's not a rubber stamp.
In the official documents to the FDA on Gardasil there is a section in the initial approval document and the close-out document dated September 12, 2008 that has the heading "New Medical Conditions." I guess a vaccine is safe even when over 50 % of the participants had a new medical condition when the first document was presented. I also guess it is safe when 73.3% of the participants acquired a new medical condition in the first year per the close out document of 2008. It must be their opinion that the adverse events when compared between the vaccine and an alum or carrier solution are fine when the numbers are close. It must be safe then.
To me the lay person ¾ of the participants having a new medical condition means that ¾ of the vaccinees in the population will have a new medical condition. This is not rocket science. This could mean millions of young girls and women will have a new medical condition after receiving the Gardasil vaccination.
What is wrong with this picture? This does not make any logical sense to me. What about you?
Dubbed a "puzzling" disorder, the growing occurrence of children diagnosed with a form of autism, a lifelong developmental disability, presents challenges not only for the children on the spectrum, but their families as well. With early intervention, support and awareness, those challenges can be minimized and those with autism can lead fuller lives.
In Polk County, resources exist to help families cope with and learn more about how to help their autistic children. April is National Autism Awareness Month, and with incidences of children diagnosed on the rise, a few local families opened up to share their experiences of living with the developmental disorder.
Cory's story
"Cory is very happy and funny - he asks if he can be a little boy again," said Cory's mother, Dawn Van Meter. Preferring the term "differently-abled" to describe her son's challenges of living with autism, Van Meter said it's difficult for Cory, 16, to understand he is growing into a man and cannot be boy again.
Residents of Winter Haven, Van Meter and her husband, John, first began to suspect something was amiss with Cory's development after his first set of shots at the age of two months. All of a sudden, the infant, once alert and holding his head up, could no longer fully lift his head.
"(His head) stayed cockeyed for at least six weeks to eight weeks," Van Meter said, "but then he kind of came around, he could lift his head again." Her concern dismissed by the doctors as a crick in the neck, Van Meter said she believed them; being a new mother, she had nothing with which to compare the situation.
After the cockeyed head corrected itself, Cory developed fairly typically, Van Meter said, and his milestones seem to be fine. He walked when he was 12 to 13 months and began babbling on time.
"He said 'Mamma' and that was pretty much it until around 18 months or so. It just went to gibberish and it seemed like he was making more sounds, but they were all guttural," Van Meter said. She said again the doctors assured her that boys develop slower than girls and she shouldn't worry.
"Then we had our daughter and Cory was about 30 months, and just before he turned 3, she was already saying (Dada)," Van Meter said.
"And I was like, 'Well, hang on, he's almost 3 and he's never said that,' and I knew something was not right, but I couldn't pinpoint it," she said.
So, she began researching and reading anything she could get her hands on.
"I guess about that time I looked into Child Find, which is a service through Polk County," Van Meter said.
An early intervention program, Child Find assists with children who have special needs who are currently not in school.
Through Child Find, Van Meter was able to find a proper Exceptional Education and Student Services (ESE) program for Cory. She also was able to make the connection with the Center for Autism and Related Disabilities (CARD) through the University of South Florida, where she took Cory for testing.
"And they came up with PDPNOS, which stands for pervasive developmental disorder, not otherwise specified," Van Meter said. "That falls under the umbrella of autism, and (it was) at this point that I figured it was autism."
"He was only 3," she continued. "At this point, they were not using the 'A word' - it's developmental - you don't want to put that (label of autism) on a kid until 6 years of age when they should have grown out of something or developed further."
By that time, Cory was enrolled into a pre-kindergarten VE - varying exceptionality - program at Dundee Elementary School, Van Meter said. Cory was with other children with issues such as Down syndrome, cerebral palsy or sensory issues like deafness. The pre-k teacher reported that Cory was not interacting with the other children and preferred to stay by himself.
"We even had taken him to testing with his ears because there were times when I would call his name and he wouldn't turn around," Van Meter said. His hearing was fine and genetic testing ruled out other maladies such as Fragile X syndrome, an inherited mental impairment. It was around this time that Van Meter read a book called "What to Do About Your Brain Injured Child" by Glenn Doman.
"It went into talking about the brain and all the developmental stages of the typical child," she said. They attended a weeklong course associated with the book in Philadelphia that taught about brain development and different therapies to hopefully reconnect some synapses in the brain that might be missing. The Van Meters saw the course as their best option for then-4-year-old Cory.
Now a board member of the Central Florida Autism Institute (CFAII.org) in Lakeland, Van Meter has since changed her approach from "fixing" Cory to helping him reach his highest potential, whatever that may be. After the course, the parents took Cory out of school and began an intensive program with him that included trying a gluten- and casein-free diet, breathing treatments, vitamin supplements, flash cards and relearning basic steps such as creeping on his hands and knees and crawling on his belly.
"It was like starting over," Van Meter said. "We did this six days a week, 10 to 12 hours a day for about two and half years - we had tons of volunteers."
"We started out crawling on the belly a couple feet, to 200 meters a day on the belly, to going a thousand meters a day creeping and crawling," she said. Van Meter did the exercises with her son. Together they crept, belly-crawled, and patterned religiously in the hopes of helping Cory's brain to make the connections he seemed to be missing.
"It was very intensive, but we feel it helped him," Van Meter said. "He was progressing, so in our minds it was working."
Van Meter is quick to stress she is not anti-vaccine, although she does have a belief of "educate before you vaccinate." The Van Meters may never really know what caused Cory's autism; however, they believe the vaccines may have triggered a predisposition for autism.
"And I don't believe in the (shot) schedule that we have," she said. "I believe that we get them too soon, too many at one time. If I had to do it all over again, I wouldn't do it before they were 2 years old. I would separate (the shots) out. I would not do combination shots."
Van Meter said parents have more control than they realize over the (shot) schedule their children receive. Working with her doctor, she tailored the schedule to her liking and had waivers signed when necessary, citing a familial predisposition to autism.
Van Meter's daughter, Connor, 14, just received the shots most children receive at the age 5, but Van Meter made sure the mercury additive, thimerosal, was removed from the combination shot. Connor is not autistic.
When Cory was 7 years old, he learned how to form the "d" sound and said "Dada" for the first time. He also began to echo people's speech, which is natural in speech development.
Van Meter said she put Cory back in a classroom when she noticed he would become upset when his sister, Connor, was dropped off at school, and he even tried to say her name - a sign Van Meter took to mean that Cory was noticing there were people in the world and was maybe ready for school again.
Now is a sophomore at Lake Region High School in Eagle Lake, Cory is in a self-contained classroom with other children who are also "differently-abled." However, Cory soon will take computer and reading courses with students who do not have autism.
A story of Hope
With all different sorts of paths to go down, parents of autistic children have choices to help their children reach their highest potential.
Winter Haven resident Kathy Lamond, whose daughter, Hope, is autistic, said no longer do families have to search in the dark for answers and support.
With incidences of autism in boys being four times greater than in girls, Hope's autism is a rarity. In fact, Lamond, who insists a diagnosis of autism isn't the end of the world, said she's never met another parent with an autistic daughter. The Lamonds put Hope in a regular classroom at an early age.
Now an 11-year-old, fifth-grade student at Elbert Elementary School, Hope is described by her mother as a "quirky" child. With an older and younger sibling, Lamond said her three daughters are just like any other set of sisters; they play, fight and annoy each other. But the road to get Hope to the functioning level where she is today has been a long one.
When Hope was 6 to 8 months old, Lamond said she and her husband noticed their daughter wasn't babbling like they knew she should be.
"I started to get concerned, and the pediatricians kept telling us 'Don't worry,'" Lamond said. "But at 12 months, we put our foot down."
Lamond called Van Meter, who directed Hope's parents to Florida's Early Steps program, an early intervention program that provides services and diagnoses for children who exhibit a considerable developmental delay.
"Initially, they said it was a significant speech delay and significant sensory integration problems," Lamond said. "But once she got to age 3, they started to say it was autism."
Lamond is no stranger to autism; she has a 40-year-old brother who is autistic and blind.
Lamond said she never dreamed she would have an autistic child.
"Back then, you didn't think there was a hereditary link," Lamond said. "But, obviously, something's going on there."
The Lamonds pursued treatment and when Hope was 15 months. She was receiving speech and occupational therapy that helped to make some headway in her development.
"The spectrum (of autism) is so wide," Lamond said. "You have kids that never learn to speak and those that are going to college - and going to school with regular children." The Lamonds plugged away at Hope's speech issues and initially she was we put in Achievement Academy, a school for children with special needs. However, with the advice of CARD and the family's developmental pediatrician, the Lamonds put Hope in school with "typical" children.
"I'm a big believer in mainstreaming children with autism because I watched my mother fight to try and get my brother mainstreamed, which never happened," she said.
Lamond found a school that would take both Hope and her older sister.
"Her speech just exploded; it really was the right decision," Lamond said. "I wholeheartedly believe in inclusion, because they model themselves after their environment, and if you put them in a dysfunctional environment, they're going to pick up that dysfunctional behavior."
Although, it wasn't a perfect situation.
"After a year of that, to my dismay, they asked me where I was putting her next year, because although we had a lot of positive things, there were a lot of negative," she said. The negative were mostly behavioral issues due to Hope's ADHD symptoms, which Lamond said is perceived as purposeful behavior; however, she said children on the spectrum are oftentimes simply unable to control their behavior.
Hope eventually was moved to Elbert Elementary.
Lamond said that although many people fought Hope being included in a classroom with "regular" children, they stood firm and Elbert's administration has been very supportive. Lamond said she is very impressed by the occupational therapy the school system has provided her daughter.
Although Hope has been on the honor roll since day one, Lamond said Hope struggles academically because the classes move so fast.
Socially, Lamond said her daughter, who openly tells people she's autistic, has both on and off days.
"Some kids are OK with her and some kids shun her because she's different, but overall it's been a good experience for us," she said.
Lamond believes Hope's presence in the classroom is good for the other children.
"It teaches children compassion, and I think it's a good lesson toward helping them understand that people with disabilities can be productive and neat people," she said. At home, Lamond said they do not have any lower expectations for Hope.
"I have three girls and (Hope) has to start the laundry and make her bed just like the other two," Lamond said. "So, we've at least tried to hold her to the same standards because we want her to be independent. We aren't ruling anything out; we have a college fund for her, we want her to be able to live on her own if she wants to.
Currently, Lamond is working with Hope in a therapy called RDI - relationships development intervention. The theory behind RDI is that children with autism missed certain milestones as they've grown up and they can go back to remediate these milestones, such as better eye contact and picking up on social cues.
"There is no magic bullet. There is no one therapy that works and the child is all better," Lamond said. "Everything I've done has put a little piece of the puzzle back in place, to making her a little more whole. She's a wonderful child. I wouldn't ask for anything different."
Piecing it together
The Central Florida Autism Institute (CFAII) began in 1997 in response to the frustrations that families have had trying to access services for their autistic children. Terry Millican, one of the founders and now the executive director of CFAII, has an 18-year-old autistic son named Ian.
Millican said CFAII's emphasis has always been on intensive behavior-based therapy. A little more than two years ago, the institute was able to recruit an Applied Behavior Analysis (ABA) provider, Andrea Holladay, from Miami. Using positive reinforcements to master skills, ABA therapy addresses social and language deficits, Millican said. An independent contractor working on a fee-for-service basis, Holladay goes into the homes of children with or working with them in CFAII's offices, located at 1525 S. Florida Ave., Suite 2, in Lakeland.
"ABA therapy is endorsed by the National Institute of Health and the surgeon general," Millican said. "It is the most effective intervention for individuals with autism. Even our CARD center in Tampa explored the most successful intervention for children with autism, and they recommended behavior-based intervention at an intense level at an early age."
Millican said "intense" is a subjective term; however, in all of her research, she said 20 to 40 hours a week is a good target to make a difference in behavior. She said CFAII has purchased the Fast Forward program, developed specifically for children with autism, and will offer it to families at a significantly reduced rate.
"We're trying as an organization to put our money into interventions that are outcome based and that have credible data to support them," she said. "There are a lot of interventions that don't."
Originally, Millican's son was diagnosed "severely autistic," and she and her husband were told Ian was "un-testable." At that time, she said, it was "before they had 90 percent of interventions that are available now." She said that was fortunate because her son was mainstreamed into regular classrooms right away, which helped him socially and otherwise. Ian is now a junior at Lake Gibson High School in Lakeland. Millican said he will graduate with a special diploma and most likely will stay in high school until the maximum age, 22.
In addition to numerous projects trying to increase autism awareness, one of Millican's main priorities as the executive director of CFAII has been to work with Polk County Public Schools to get a more consistent outcome-based approach in the schools. For example, she would like behavior specialists at every school where kids with autism are served. With very few ABA specialists in Central Florida, Millican said her program would like to see Holladay on the district's list of providers. She said the ratio of providers to children with needs is like comparing a drop of water to the ocean.
"We are dialoguing (with the Polk school district), and we do finally have some administrators who are interested in working with families," Millican said. "They're trying, which is more than I could say five years ago."
Another concern for the board of CFAII is working with employers on training initiatives to let them know that their children with autism are employable.
"Employment is dismal for most adults with disabilities, but especially adults with autism," Millican said. Project Search is a pilot program to help get real employment opportunities for individuals with disabilities. Together with her husband, Millican is working to help her own son, an artist, begin his own T-shirt screen-printing business.
"There is hope for people with autism," Millican said. "Anyone can get a job and work with the right training and support, and anyone can live in the community."
By Rick Johnson is senior online editor of HealthLeaders Media.
ASD. It stands for Autism Spectrum Disorder. And it's the "disorder" part that makes me cringe every time.
I don't like to think of my 6-year-old son as having a life-long medical disorder. He's smart, happy, silly, and very sweet. He was diagnosed with Asperger's (or high-functioning Autism) about two years ago.
Trevor has a mind for numbers and memorization that I envy. He loves science, complex machines, and Wheel of Fortune. But he struggles with routine human interactions and the rules of society that the rest of us have somehow mastered without much thought at all.
I'll never forget the day at Chuck E. Cheese's, when my then 2-year-old had a shocking tantrum because two other children were on the slide at the same time. This breaking of his carefully constructed rules was so severe that he didn't know how to cope. He stood there watching the other kids from a safe distance, covering his ears, and shrieking over and over: "Have to wait your turn! Have to wait your turn! Have to wait your turn!" Clueless and confused we tried to get him to calm down and play with other children before finally giving up and taking the pizza and cheese sticks to go.
Now my wife and I do everything we can to prepare our boy for life's seemingly simple challenges that remain at times frightening, overwhelming, or impossible to a child on the autism spectrum. It makes us manufacture contingencies for such mundane events as what to do if the school fire alarm rings or no one asks him to play at recess or the teacher accidently skips his turn or it's time for a visit to the pediatrician.
This list goes on and on, and new items that could invoke tears are added frequently. If everyday experiences are terrifying, just think of the anxiety that someone with an ASD must go through during a visit to the hospital.
Today is World Autism Awareness Day, and it reminds me that even those progressive healthcare organizations that have taken strides toward establishing a culture of patient-centered care might not have an environment that provides a quality interaction for their autistic patients.
And the number of people today with ASDs is jaw-dropping. There are up to 1.5 million Americans living with ASDs, and one in 150 children (or one in 94 boys) has an ASD, according to research by the Centers for Disease Control and Prevention.
"If you see enough patients, sooner or later you're going to see someone with autism," says Edward Carr, PhD, leading professor for the Department of Psychology at State University of New York at Stony Brook. Yesterday on the phone, I spoke with Carr, who is a featured expert for the Autism Society of America, about the common interactions people with ASDs have with the healthcare system.
People in your community might assume that care providers at the local hospital or medical group know how to interact effectively with autistic patients and their family members. In most cases, however, doctors and nurses are about as knowledgeable of ASDs as I was on that day four years ago at Chuck E. Cheese's when I was stunned and useless.
The surprising thing is the information and training that could help is available, says Carr. Researchers have made great advances at developing behavioral approaches for those with ASDs, but there just aren't enough healthcare providers trained to interact effectively with autistic patients.
In a "normal" hospital interaction, an autistic child won't likely be able to communicate effectively with the healthcare team, and the odds are pretty good that the new environment is going to increase the child's anxiety. Just imagine if an autistic boy needs to get rushed into the emergency room. Facing a new environment, surrounded by strange people, strange smells, and strange sounds. You couldn't blame him for acting out when the physician attempts to evaluate him, but too often the quick reaction is to sedate the autistic child to put the clinicians at ease, says Carr.
Just a little training in communicating effectively with ASD patients would go a long way toward giving them a real patient-centered interaction, says Carr. The good news is that the American Academy of Pediatrics has an online toolkit for clinicians: Caring for Children with Autism Spectrum Disorders. And Carr says the Autism Society of America has begun offering physicians education tracks with CME credits at its annual conference.
The long-term solution would be to make sure that every clinician has training and experience in dealing with ASD patients, says Carr. But in the short-term, let's at least acknowledge that autistic people are a part of our community, and that perhaps our healthcare system isn't a welcoming place for them just yet.
Instructional Video: When we started ABA/DTI with our son, I had no idea what it was or how to do it. I thought I'd make this to help other families trying to find ways to help teach their children. Please enjoy watching my son learn. It was amazing to me to see how fast he started retaining information once we began ABA/DTI with him!
Please share this video with friends, family and also with your contact list on Facebook and MySpace.
Finding could steer caregivers away from situations that would add to anxiety
THURSDAY, April 2 (HealthDay News) -- Low levels of a stress hormone may be responsible for the obsession with routine and dislike for new experiences common in children with a certain type of autism.
U.K. researchers found that children with Asperger syndrome (AS) do not experience the normal twofold increase of cortisol upon waking up. Levels of the hormone in their bodies do continue to decrease throughout the day, though, just as they do in those without the syndrome.
The body produces cortisol, among other hormones, in stressful situations. Cortisol increases blood pressure and blood sugar levels, among other duties, to signal the body's need to adapt to changes occurring around it. It's thought that the increase shortly after waking helps jump-start the brain for the day ahead, the researchers said.
People with Asperger syndrome notably have very repetitive or narrow patterns of thought and behavior, such as being obsessed with either a single object or topic. Though tending to become experts in this limited domain, they have otherwise very limited social skills, according to the study.
"Although these are early days, we think this difference in stress hormone levels could be really significant in explaining why children with AS are less able to react and cope with unexpected change," study co-leader Mark Brosnan, from the psychology department at the University of Bath, said in a news release issued by the school.
If these Asperger symptoms are caused primarily by stress, caregivers could learn to steer children away from situations that would add to anxiety, the researchers said.
"This study suggests that children with AS may not adjust normally to the challenge of a new environment on waking," study researcher David Jessop, from the University of Bristol, said in the news release. "This may affect the way they subsequently engage with the world around them."
The researchers, whose findings were published in the journal Psychoneuroendocrinology, will next study if this lack of cortisol upon waking also occurs in children with other types of autism.
New programs aim to keep kids with autism out of institutions
By Nancy Shute
Autism is growing up. The children diagnosed with the developmental disorder in the 1990s are now teenagers, and they and their parents are starting to wrestle with the question of how they will live as adults. "Unfortunately, I don't think we as a country are ready for that," says Peter Bell, executive vice president for programs and services at Autism Speaks, an advocacy group.
With the rate of autism cases rising from 1 in 2,500 15 years ago to 1 in 150 today, the number of families seeking to map out a secure future for a child with autism can only rise. "We really need to change the paradigm about what people with autism are capable of doing," say Bell, who is just starting to face that question himself. His 16-year-old son has autism and is a freshman in high school. "They generally have some great employable skills that haven't been held to the highest and best use."
Around the country, innovative programs are now offering young people with autism a vital choice-the chance to work, go to college, or even start a business, rather than go on disability and be consigned to a sheltered workshop. There's an economic incentive in this time of strained government budgets; a person with autism costs society about $3.2 million over his or her lifetime, including lost productivity and adult care. Each hour spent collecting a paycheck and not collecting disability lowers that cost. And the personal benefit is incalculable.
The biggest news is an approach called "supportive and customized employment," in which school systems and state vocational rehabilitation programs work together to help teenagers move into the workforce while still in high school. Counselors work with employers to figure out how to make aspects of a disability an asset. "A lot of your obsessive-compulsive behaviors are a real asset on the job," says Wendy Parent, a research associate professor and assistant director at the Kansas University Center for Developmental Disabilities. One young man who liked to push buttons and enjoyed the sound of swishing water, for instance, started a small business washing towels for hair salons. The goal is not to guilt-trip employers into taking special-needs workers but to show how they can be useful. "It's always framed in a business sense. We're not asking for charity. We're saying this person can work for you."
Other new options include:
* Employment First programs in Georgia and other states help shift the priorities of social service agencies so that the first step is to place people in a paid job in a regular workplace for as many hours a day as they can handle, rather than automatically placing young adults on disability when they age out of the school system at 18 or 21.
* Resource ownership, in which job-training funds and Social Security work incentives are used to buy tools or equipment that a disabled person will then use on the job. One young man bought a Bobcat that he used at a construction company; a young woman bought a commercial refrigerator that she used at a catering company. The equipment belongs to the individual, giving the company an incentive to keep them on the job.
* Starting a small business. Entrepreneurship may sound like an impossibly high leap for someone who can't speak. But it can work with the right support. Joe Steffy, 23, runs Poppin' Joe's Kettle Korn in Louisburg, Kan., with the help of his parents and five part-time employees. He has autism and Down syndrome and is nonverbal. Steffy got help establishing the business from the Social Security Administration's Pass Plan, which offers financial support in transitioning to work, as well as the state vocational rehabilitation office and council on developmental disabilities, which helped Joe buy the corn-popping equipment. In 2008, Poppin' Joe's had sales of more than $50,000. (Here's more on the story of Joe's business.) "Joe loves to work," says his father, Ray Steffy. "We see the quality of life he has and how he's become part of the community. That's priceless."
Advocates for supportive and customized employment say that in too many parts of the country, school and vocational counselors still suggest sheltered workshops as the only option. And the cooperation needed between families, employers, and social services agencies to make employment work can be tough to pull off. Wendy Parent helped one-high-school student work up a business plan to sell Kansas University souvenirs in a local coffee shop. The business and high school backed the plan, but the plan fell apart when Parent couldn't find a job coach for the girl. "You're going to find weaknesses in every community," she says. "But this is the time to experiment and try new things."
For more on how families can start planning a working future for children with autism, check out APSE (formerly the Association for Persons in Supported Employment) and its Network on Employment, which provides advocacy and education on supported employment, as well as the University of Montana's Rural Institute, which helps families find resources for supported employment. The Rehabilitation Research and Training Center on Workplace Supports and Job Retention at Virginia Commonwealth University has pioneered research on creative ways to employ people with disabilities and is a gold mine of information on transitioning to work or college.
I believe that the time has come for technology to direct more attention to social issues of great importance. To that end, I have created a unique web browser called ZAC Browser (www.zacbrowser.com) that was built solely to protect and enhance the life of its young autistic users capturing both cutting edge technology and addressing social well being at the same time. ZAC Browser provides safe internet access intentionally directed to meet the specific needs and limitations of the 750,000 autistic children who benefit from using it.
John LeSieur
President & CEO
People CD Inc.
http://www.peoplecd.com
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