The Age of Autism: Julia
By Dan Olmsted
UNITED PRESS INTERNATIONAL
Leola, PA, Apr. 19 (UPI) -- Three-year old Julia is napping when I arrive at the spare, neat, cheerful house on Musser School Road near the town of Leola in Lancaster County.
She is the reason I have driven through the budding countryside on this perfect spring day, but I really do not need to meet her.
In the last column, I wrote about trying to find autistic Amish people here in the heart of Pennsylvania Dutch country, and noted there should be dozens of them -- if autism occurs at the same prevalence as the rest of the United States.
So far, there is evidence of only three, all of them children, the oldest age 9 or 10. Julia is one of them. I found out about her through a pediatrician in Richmond, Va., Dr. Mary Megson. I had been asking around for quite some time about autism and the Amish, and she provided the first direct link.
Megson said she would give my name to this child's mother, who could call if she chose. A few days later the phone rang. It was Stacey-jean Inion, an Amish-Mennonite woman. She, her husband Brent and their four children live simply, but they do drive a vehicle and have a telephone. After a few pleasantries, I told her about my trying to find autistic Amish.
Here is what she said, verbatim:
"Unfortunately our autistic daughter -- who's doing very well, she's been diagnosed with very, very severe autism -- is adopted from China, and so she would have had all her vaccines in China before we got her, and then she had most of her vaccines given to her in the United States before we got her.
"So we're probably not the pure case you're looking for."
Maybe not, but it was stunning that Julia Inion, the first autistic Amish person I could find, turned out to be adopted -- from another country, no less. It also was surprising that Stacey-jean launched unbidden into vaccines, because the Amish have a religious exemption from vaccination and presumably would not have given it much thought.
She said a minority of Amish families do, in fact, vaccinate their children these days, partly at the urging of public health officials.
"Almost every Amish family I know has had somebody from the health department knock on our door and try to convince us to get vaccines for our children," she said. "The younger Amish more and more are getting vaccines. It's a minority of children who vaccinate, but that is changing now."
Did she know of any other autistic Amish? Two more children, she said.
"One of them, we're very certain it was a vaccine reaction, even though the government would not agree with that."
Federal health officials have said there is no association between vaccinations and autism or learning disabilities.
"The other one I'm not sure if this child was vaccinated or not," she added.
During my visit to their home, I asked Stacey-jean to explain why she attributed the first case to vaccines.
"There's one family that we know, their daughter had a vaccine reaction and is now autistic. She was walking and functioning and a happy bright child, and 24 hours after she had her vaccine, her legs went limp and she had a typical high-pitched scream. They called the doctor and the doctor said it was fine -- a lot of high-pitched screaming goes along with it.
"She completely quit speaking," Stacey-jean said. "She completely quit making eye contact with people. She went in her own world."
This happened, Stacey-jean said, at "something like 15 months." The child is now about 8.
For similar reasons, Julia Inion's Chinese background is intriguing. China, India and Indonesia are among countries moving quickly to mass-vaccination programs. In some vaccines, they use a mercury-based preservative called thimerosal that keeps multiple-dose vials from becoming contaminated by repeated needle sticks.
Thimerosal was phased out of U.S. vaccines starting in 1999, after health officials became concerned about the amount of mercury infants and children were receiving. The officials said they simply were erring on the side of caution, and that all evidence favors rejection of any link between Autism Spectrum Disorders and thimerosal, or vaccines themselves.
Julia's vaccinations in China -- all given in one day at about age 15 months -- may well have contained thimerosal; the United States had stopped using it by the time she was born, but other countries with millions to vaccinate had not.
Stacey-jean said photographs of Julia taken in China before she was vaccinated showed a smiling alert child looking squarely at the camera. Her original adoptive family in the United States, overwhelmed trying to cope with an autistic child, gave Julia up for re-adoption. The Inions took her in knowing her diagnosis of severe autism.
I tried hard -- and am still trying -- to find people who know about other autistic Amish. Of the local health and social service agency personnel in Lancaster, some said they dealt with Amish people with disabilities, such as mental retardation, but none recalled seeing an autistic Amish.
Still, I could be trapped in a feedback loop: The Amish I am likeliest to know about -- because they have the most contact with the outside world -- also are likeliest to adopt a special-needs child such as Julia from outside the community, and likeliest to have their children vaccinated.
Another qualifier: The Inions are converts to the Amish-Mennonite religion (Brent is an Asian-American). They simply might not know about any number of autistic Amish sheltered quietly with their families for decades.
It also is possible the isolated Amish gene pool might confer some kind of immunity to autism -- which might be a useful topic for research.
Whatever the case, Stacey-jean thinks the autistic Amish are nowhere to be found.
"It is so much more rare among our people," she said. "My husband just said last week that so far we've never met a family that lives a healthy lifestyle and does not vaccinate their children that has an autistic child. We haven't come across one yet."
"Everywhere I go (outside the Amish community) I find children who are autistic, just because I have an autistic daughter -- in the grocery store, in the park, wherever I go. In the Amish community, I simply don't find that."
April 21, 2005
April 19, 2005
A Beautiful Thing
A great way to help an autistic student and build a bunch of compassionate adults.
Fellow students pave the way for autistic classmate
Sandy Cullen Wisconsin State Journal
Twelve-year-old Garner Moss is fascinated with maps and has an uncanny knack for remembering geographic locations.
He also loves buses and can hear one eight blocks away, said Brent Lodewyk, his teacher at Stephens Elementary.
That's why Lodewyk had to move his combined fourth- and fifth-grade class from the street side of the school to the back.
Garner, who has autism, would jump out of his seat and stand at the window, excitedly announcing, "The bus is coming!"
Moving Garner's classroom is just one of the things that makes it easier for him to be in a regular classroom. At times he wears headphones to listen to music so he's not as distracted by other things that are happening around him.
In addition to his classroom teacher and special education teacher Kara Meyers, he gets lots of support from his classmates, who formed the group A Helping Hand For Autism to help other students understand more about the neurological disability that can affect how a person sees, hears, feels and communicates - and about Garner.
"It's really created by kids, run by kids," Lodewyk said.
Advertisement:
The fourth- and fifth-graders in AHHFA - pronounced "ah- fa" - have put together a presentation they are taking to other classes at Stephens this month, which is Autism Awareness Month.
They also will be making a DVD to introduce Garner and explain his autism to the new classmates he will encounter next year at Jefferson Middle School.
As part of their presentation, group members are asking students to decorate a drawing of a hand and hang it up outside of their classroom as a show of support.
Their presentation also includes a poster board with photographs of Garner enjoying swimming, hiking and horseback riding.
"Just because a person has autism doesn't mean that they can't do all that stuff," said fifth-grader Lexus James, 11.
In fact, the group's young members can tell you, Mozart, Thomas Jefferson and Albert Einstein had some degree of autism.
Their display uses puzzle pieces to represent the mystery of autism - for which there is no known cause or cure - along with bright colors that represent hope.
Next year, they hope to do presentations at other schools, such as Jefferson and Spring Harbor Middle School.
AHHFA members, who have their own bright green T-shirts, meet once a week over lunch with Garner's mom, Beth Moss, who helps the students plan activities.
She hopes that being in a regular classroom will enable Garner to function independently in the real world, where perhaps he could get a job mapping bus routes.
That's why Garner's family moved from Tennessee to Madison, which has a reputation for successful inclusion of students with special education needs in regular classes.
Students with special needs are segregated only when it benefits the student, or to address behavior or safety concerns, and only for as long as necessary, said Jan Duxstad, a special education coordinator for the district.
Not only did Moss choose Madison, she selected Stephens Elementary after speaking with Principal Nancy Yoder.
At Stephens, Garner is one of 12 students with autism, or 3 percent of the school's students, Meyers said, adding that other schools in the district, as well as nationally, typically have 1 percent of students with the disorder.
In the district, 328 students have some form of autism, spokesman Ken Syke said.
Lodewyk, who has been Garner's classroom teacher for two years, said AHHFA has made a big difference in Garner's confidence and personal growth.
"They're really teachers," Lodewyk said of the group's members. "He's very supported by his friends."
"People were teasing our friend, Garner, and I wanted to help stop that," said fifth- grader Azucena Wisch, 11.
"They were telling him to hug other people and telling him to say stuff to other people because they thought it was funny," Wisch said, adding, "He'd be the one to get in trouble."
"When I didn't know him, I admit I teased him a bit," said fifth-grader Robert Quintana. "I wanted to start being his friend to help him out."
AHHFA members who are going on to Jefferson say they will continue to look out for Garner at their new school.
Garner said he likes having a group of supporters to lend him a helping hand.
"I have more friends with AHHFA," said Garner, who isn't worried about having to go to a new school next year. "I'm excited."
Fifth-grader Camden Hirshfeld said, "Through AHHFA and our help of Garner, he has become a much better student and has got a lot of good friends, including me."
Contact Sandy Cullen at scullen@madison.com or 252-6137.
April 5, 2005
Antioxidant Levels May be Linked to Autism
Antioxidant Levels May be Linked to Autism
By Serena Gordon
Forbes.com
SUNDAY, April 3 (HealthDay News) -- Could oxidative stress, a suspected contributor to many disease processes like heart disease and cancer, also play a role in autism?
University of Arkansas researchers think it may.
In a recent study, autistic children were found to have significantly lower levels of an antioxidant called glutathione and its metabolic precursors.
"Glutathione is the major antioxidant in cells important for detoxification and elimination of environmental toxins, and its active form is reduced in about 80 percent of the kids with autism," said the study's lead author, S. Jill James. She is director of the biochemical genetics laboratory at Arkansas Children's Hospital Research Institute and a professor of pediatrics at the College of Medicine at the University of Arkansas for Medical Sciences in Little Rock.
Reduced levels of antioxidants, such as glutathione, would increase the level of oxidative stress. Oxidative stress occurs when antioxidants aren't able to clear the body of free radicals, which can damage cells in the brain, gastrointestinal tract and immune system.
"[Our findings] suggest that these kids would be more sensitive to an environmental exposure and would be less likely to detox from heavy metals," said James.
Exposure to heavy metals, such as the mercury preservative that was commonly used in children's vaccines until recently, has long been suspected as a trigger for autism in genetically susceptible children. Most research, however, has failed to confirm this link, and in 2004, the Institute of Medicine issued a report stating that it did not believe that vaccines contributed to the development of autism.
Not everyone agreed with that conclusion, however. Laura Bono, chairwoman of the National Autism Association, and the parent of an autistic child, believes vaccines play some sort of role in the development of autism and said the new study's findings would seem to support a link.
"These are children that are more vulnerable, that don't quite detox the way the rest of us do," said Bono.
James didn't look at the vaccine question for the current study. She said that autism is believed to have a genetic basis, but that it "takes an environmental trigger to bring out the genetics."
For this study, James and her colleagues compared blood samples of 90 autistic children to those of 45 children without the disorder, and found that the active form of glutathione was reduced by about 80 percent in children with autism. James also said the metabolic precursors of glutathione were reduced.
"If they have lower glutathione, they would reach a toxicity earlier than someone with higher levels," said James. "But, it's not clear whether this is a cause or a consequence of autism," she added.
James and her team also looked at changes that occur in several genes that could affect glutathione metabolism in blood samples from 233 autistic children, vs. 183 children without autism. They found changes in three genes more often in the children with autism. James said these are common genes that don't cause autism, but they could contribute to the development of these metabolic abnormalities.
MORE
By Serena Gordon
Forbes.com
SUNDAY, April 3 (HealthDay News) -- Could oxidative stress, a suspected contributor to many disease processes like heart disease and cancer, also play a role in autism?
University of Arkansas researchers think it may.
In a recent study, autistic children were found to have significantly lower levels of an antioxidant called glutathione and its metabolic precursors.
"Glutathione is the major antioxidant in cells important for detoxification and elimination of environmental toxins, and its active form is reduced in about 80 percent of the kids with autism," said the study's lead author, S. Jill James. She is director of the biochemical genetics laboratory at Arkansas Children's Hospital Research Institute and a professor of pediatrics at the College of Medicine at the University of Arkansas for Medical Sciences in Little Rock.
Reduced levels of antioxidants, such as glutathione, would increase the level of oxidative stress. Oxidative stress occurs when antioxidants aren't able to clear the body of free radicals, which can damage cells in the brain, gastrointestinal tract and immune system.
"[Our findings] suggest that these kids would be more sensitive to an environmental exposure and would be less likely to detox from heavy metals," said James.
Exposure to heavy metals, such as the mercury preservative that was commonly used in children's vaccines until recently, has long been suspected as a trigger for autism in genetically susceptible children. Most research, however, has failed to confirm this link, and in 2004, the Institute of Medicine issued a report stating that it did not believe that vaccines contributed to the development of autism.
Not everyone agreed with that conclusion, however. Laura Bono, chairwoman of the National Autism Association, and the parent of an autistic child, believes vaccines play some sort of role in the development of autism and said the new study's findings would seem to support a link.
"These are children that are more vulnerable, that don't quite detox the way the rest of us do," said Bono.
James didn't look at the vaccine question for the current study. She said that autism is believed to have a genetic basis, but that it "takes an environmental trigger to bring out the genetics."
For this study, James and her colleagues compared blood samples of 90 autistic children to those of 45 children without the disorder, and found that the active form of glutathione was reduced by about 80 percent in children with autism. James also said the metabolic precursors of glutathione were reduced.
"If they have lower glutathione, they would reach a toxicity earlier than someone with higher levels," said James. "But, it's not clear whether this is a cause or a consequence of autism," she added.
James and her team also looked at changes that occur in several genes that could affect glutathione metabolism in blood samples from 233 autistic children, vs. 183 children without autism. They found changes in three genes more often in the children with autism. James said these are common genes that don't cause autism, but they could contribute to the development of these metabolic abnormalities.
MORE
March 21, 2005
Traveling tips for families with an autistic child
Chantal Sicile-Kira
sheknows.com
Traveling with children may not seem like such a big deal. However, when one of them has an autism spectrum disorder, it adds an extra dimension. Chantal Sicile-Kira, author of Autism Spectrum Disorders and host of a weekly radio show "The Real World of Autism with Chantal" on Autism One Radio (http://www.autismone.org/), has traveled widely with her autistic son. She offers some insight.
Many families who have an autistic child do not travel because they are concerned about how the child will handle the change and disruption, or are overwhelmed at the thought of managing the certain behaviors their child might exhibit in public. Leaving the security of home to a new place can be off putting for a child with autism. All the preparation may seem a bit daunting, but it pays to plan ahead.
In my book, I offer the following suggestions for preparing to travel with your child, which can be adapted to suit your child's needs. How you prepare your child depends on his age and ability level; and taking a short trip is recommended before attempting long voyages.
Airports and train stations are areas that involve lots of waiting. Teach your child the "waiting" skill if he does not have it. Make or find a picture that will represent "waiting" to your child, such as a line drawing of a "stick" person sitting in a chair, with the face of a clock next to it. Write "waiting" clearly on the card. Glue to cardboard, laminate it and place a piece of Velcro somewhere on it. Next, make sure you have picture of whatever items your child usually requests or wants immediately (favorite food, toy, ride in the car) backed with Velcro.
Have a second's timer available. When you are ready to teach this skill, have the favorite items you know the child likes available to you, but out of sight and reach of the child. The next time your child communicates that he wants that preferred item, put the picture on the Velcro on the waiting card, then put the timer on for a few seconds. Say, "we are waiting" and point to the card. When the timer goes off, immediately give him the desired item.
Some children need to start with a wait of only five seconds, and work on up from there. Others can start at 10 seconds or even closer to a minute. Once your child has learned to wait for a certain amount of time, add more time in small increments. Eventually, your child will understand that he WILL get what he asked for; it is only a matter of time. Then, when the family is preparing to go out, you can put the picture representing where you are going on the waiting sign and put the timer on 10 minutes (for example) before leaving the house. This will give him a heads up about when you are going, and where. When traveling, you can take the waiting sign, timer and goodies with you if necessary. Some may not need it, others will.
Put up a monthly calendar with the departure date clearly marked, and has the child check off every day until departure. Bring the calendar with you and mark off number of days in one place or on the trip, always having the return date indicated.
Put together a picture and word "travel book" of what means of transport you are going to be using to, who you are going to see, where you will sleep, and what you will do or see at your destination. Go over this with your child, like you would a storybook as often as you like in preparation for the trip. Using a three-ring binder is best, as you can add extra pages or insert the calendar mentioned above for use on the trip.
Put together a picture or word schedule of the actual journey to take with you on your trip. Add extra pages to the travel book. Add Velcro and attach pictures or words in order of the travel sequence. Add an empty envelope to add the "done" pictures when you have finished one step of the journey.
For example, if you are flying to another city, start with a picture of the taxi or car that will take you to the airport. (When you are at the airport, have him remove the taxi) picture and put it in the envelope. Then have a picture of the airport, followed by the waiting picture, and then the airplane, followed by the airport, then the waiting sign, the taxi and then the hotel.
Think of your child's daily routine and the items he likes or needs for his routine and bring them along to make him feel more at home. Bring whatever foods and drinks will keep him happy on the trip.
Buy some small, inexpensive toys that he can play with and that if you lose it will not be the end of the world. If he only plays with one favorite item, try to find a duplicate and see if you can "break it in" before the trip. Do not wash any items (including plush toys) before the trip as the child may feel comfort in the "home" smell of his cherished item.
When staying in a hotel, It is a good idea to call ahead and ask for a quiet room. You may wish to explain about your child's behavior if there is a likelihood of your child exhibiting them in the public part of the hotel. Same with a friend or relative's home. It can be a bit disconcerting for everyone concerned if your child takes his clothes off and races through your friend's home stark naked.
Make sure your child has an id tag attached to him somewhere, with a current phone number written on it. You can order medical bracelets, necklaces and tags to attach to shoe laces for your child. Additionally, if your child can carry it in his pocket, make an ID card with a current photo, date and phone numbers. Be sure to put any information that is important to know such as allergies and medications, and any special information (i.e. non-verbal).
If you are traveling by plane, Sicile-Kira recommends that you call the airlines as far in advance as you can, and tell them you will be traveling with someone who has special needs. Some airlines have "special assistance coordinators." You may wish to explain about your child's needs and some of the behaviors that may affect other travelers, such as rocking in the seat. You may also request that assistance be provided to help you with your child and luggage to get to the gate, and ask that assistants meet you at the airplane upon arrival. Remember, the person may not understand about your needs. They may ask you questions and say that assistance is only for the physically handicapped, so you may need to explain in concrete terms why you need help.
sheknows.com
Traveling with children may not seem like such a big deal. However, when one of them has an autism spectrum disorder, it adds an extra dimension. Chantal Sicile-Kira, author of Autism Spectrum Disorders and host of a weekly radio show "The Real World of Autism with Chantal" on Autism One Radio (http://www.autismone.org/), has traveled widely with her autistic son. She offers some insight.
Many families who have an autistic child do not travel because they are concerned about how the child will handle the change and disruption, or are overwhelmed at the thought of managing the certain behaviors their child might exhibit in public. Leaving the security of home to a new place can be off putting for a child with autism. All the preparation may seem a bit daunting, but it pays to plan ahead.
In my book, I offer the following suggestions for preparing to travel with your child, which can be adapted to suit your child's needs. How you prepare your child depends on his age and ability level; and taking a short trip is recommended before attempting long voyages.
Airports and train stations are areas that involve lots of waiting. Teach your child the "waiting" skill if he does not have it. Make or find a picture that will represent "waiting" to your child, such as a line drawing of a "stick" person sitting in a chair, with the face of a clock next to it. Write "waiting" clearly on the card. Glue to cardboard, laminate it and place a piece of Velcro somewhere on it. Next, make sure you have picture of whatever items your child usually requests or wants immediately (favorite food, toy, ride in the car) backed with Velcro.
Have a second's timer available. When you are ready to teach this skill, have the favorite items you know the child likes available to you, but out of sight and reach of the child. The next time your child communicates that he wants that preferred item, put the picture on the Velcro on the waiting card, then put the timer on for a few seconds. Say, "we are waiting" and point to the card. When the timer goes off, immediately give him the desired item.
Some children need to start with a wait of only five seconds, and work on up from there. Others can start at 10 seconds or even closer to a minute. Once your child has learned to wait for a certain amount of time, add more time in small increments. Eventually, your child will understand that he WILL get what he asked for; it is only a matter of time. Then, when the family is preparing to go out, you can put the picture representing where you are going on the waiting sign and put the timer on 10 minutes (for example) before leaving the house. This will give him a heads up about when you are going, and where. When traveling, you can take the waiting sign, timer and goodies with you if necessary. Some may not need it, others will.
Put up a monthly calendar with the departure date clearly marked, and has the child check off every day until departure. Bring the calendar with you and mark off number of days in one place or on the trip, always having the return date indicated.
Put together a picture and word "travel book" of what means of transport you are going to be using to, who you are going to see, where you will sleep, and what you will do or see at your destination. Go over this with your child, like you would a storybook as often as you like in preparation for the trip. Using a three-ring binder is best, as you can add extra pages or insert the calendar mentioned above for use on the trip.
Put together a picture or word schedule of the actual journey to take with you on your trip. Add extra pages to the travel book. Add Velcro and attach pictures or words in order of the travel sequence. Add an empty envelope to add the "done" pictures when you have finished one step of the journey.
For example, if you are flying to another city, start with a picture of the taxi or car that will take you to the airport. (When you are at the airport, have him remove the taxi) picture and put it in the envelope. Then have a picture of the airport, followed by the waiting picture, and then the airplane, followed by the airport, then the waiting sign, the taxi and then the hotel.
Think of your child's daily routine and the items he likes or needs for his routine and bring them along to make him feel more at home. Bring whatever foods and drinks will keep him happy on the trip.
Buy some small, inexpensive toys that he can play with and that if you lose it will not be the end of the world. If he only plays with one favorite item, try to find a duplicate and see if you can "break it in" before the trip. Do not wash any items (including plush toys) before the trip as the child may feel comfort in the "home" smell of his cherished item.
When staying in a hotel, It is a good idea to call ahead and ask for a quiet room. You may wish to explain about your child's behavior if there is a likelihood of your child exhibiting them in the public part of the hotel. Same with a friend or relative's home. It can be a bit disconcerting for everyone concerned if your child takes his clothes off and races through your friend's home stark naked.
Make sure your child has an id tag attached to him somewhere, with a current phone number written on it. You can order medical bracelets, necklaces and tags to attach to shoe laces for your child. Additionally, if your child can carry it in his pocket, make an ID card with a current photo, date and phone numbers. Be sure to put any information that is important to know such as allergies and medications, and any special information (i.e. non-verbal).
If you are traveling by plane, Sicile-Kira recommends that you call the airlines as far in advance as you can, and tell them you will be traveling with someone who has special needs. Some airlines have "special assistance coordinators." You may wish to explain about your child's needs and some of the behaviors that may affect other travelers, such as rocking in the seat. You may also request that assistance be provided to help you with your child and luggage to get to the gate, and ask that assistants meet you at the airplane upon arrival. Remember, the person may not understand about your needs. They may ask you questions and say that assistance is only for the physically handicapped, so you may need to explain in concrete terms why you need help.
February 25, 2005
Good News for Vaccine Safety
The CDC has split their vaccine division so that there can be better oversight of the safety of shots our children receive:
"Critics of the agency have argued for some time that the advocacy nature of its immunization program hinders the agency's ability to monitor and investigate any adverse reactions to vaccines.
Much of the pressure has come from lawmakers and parents of autistic children, who are concerned about a possible link between rising rates of autism and a mercury preservative, thimerosal, once widely used in childhood vaccines. They have argued that the agency's dual role in promoting vaccines and overseeing their safety represents a serious conflict of interest."
Autism in the olden days
Interesting article on the ABC News web site about autistic children described in old stories.
Fairytales tell of autistic children
Leask says several stories describe children believed to have been stolen byfairies who then left behind a strange, sickly, "changeling" child."The description of changelings is very similar to those given to autistic children," she says. "Changelings were described as unresponsive, resistant to affection, did not express emotion, cried a lot or did not speak."
February 22, 2005
An Introduction to Chandler: Birth to Diagnosis
I have never really posted a good account of how we got started on this journey, and at this point I think it would be helpful to the new visitors that are coming to the blog. I suspect that many people are coming after watching the coverage on NBC and asking themselves, “could my child be autistic”. I write this with you in mind.
My husband Scott and I gave birth to our oldest son Webster in September of 2000. He was born 7.5 weeks premature and spent the first month of his tiny life in the NICU learning to breathe. Despite his rough start, he grew to a healthy little guy, and when he was only 9 months old we discovered that, Surprise! We were having baby number two!
Given the problems I had in going to term with Web, everyone was quite alarmed when I began having contractions with Chandler at only 5 months. I was ordered to bed and put on Terbutaline. After several weeks of not moving, I developed gestational diabetes and needed insulin to control it. I managed to stay pregnant to 36 weeks (to the day) and Chandler was born perfectly healthy.
At three weeks old, just three days after being vaccinated, he developed colic, which I have heard is common with ASD children. The only thing that soothed him was white noise, so I made a sound file with vacuum cleaner noise and looped it, and then would set him next to the computer speaker and turn it up until he stopped crying. He also had trouble controlling his body temp and would get flaming hot even though he was not really sick. We would strip him naked and cover him in baby wipes and call him Fire Baby.
All of this subsided after a while and until about 18 months he was a happy quiet baby who made lots of eye contact, played with his brother and sang the theme song to Maisy.
Around 18 months, on Halloween to be exact, I had a really hard day with him, and couldn’t really figure out what the problem was. I am fortunate to have a great group of girlfriends, 7 of us were pregnant at the same time and all the kids were born with in 6 months of each other. Chandler being the oldest of the pack.
We decided to dress the toddlers up in costume have a little parade through a retirement home near by, much to the delight of the elderly residents. It turned out to be a rough day for me. When all the kids happily followed their moms down the hallway, I was chasing mine who was heading out the door. When all the kids stayed in the day room where their mothers were, mine went down a hallway full of empty rooms and ran into the last door he could find. When I caught up with him it turned out that there was a bedridden man in that room who was quite tickled that the little alligator had paid him a visit. I figured God had told Chandler to head down that way so that he could have a little holiday cheer.
The rest of the day was exhausting. He would not hold my hand and walk with me like the other kids did, he would not let me carry him like the other kids would. Chandler wanted his own special tour of the place, and he didn’t really care if I came with him or not.
Afterward, we all gathered outside for pictures. I couldn’t hold him still for them and eventually gave up trying to wrestle the alligator.
That night we went to a party at the neighbors. There were a bunch of older kids running on hardwood floors, and things got very loud. As things got louder, Chandler got more upset. While his older brother was running in circles and laughing his head off with the other children, Chandler eventually became completely distressed and I couldn’t comfort him, so I took him into the back bedroom. As soon as I shut the door, he took a deep breath and flopped onto the bed as if to say, "thank God we got out of there". It was clear that he could not handle what was going on in the living room. Later that night when things calmed down, we tried to take a picture of our boys with the neighbor girls, but despite them being the only ones left in the house, he just could not handle it.
After Chandler's diagnosis I went back and watched home videos to find out when things started changing for him. We had a gap in our video's between my older son's birthday in September and Halloween. It was clear that he had changed sometime during that time. After watching the videos I checked his shot record and found that Chandler had been vaccinated just before the gap in the video, five weeks before Halloween.
From then until Christmas, I noticed that he was harder to handle than my friends kids were when we were in public, but kept telling myself not to compare him to others, or to his brother. I was getting worried that his speech was not really coming along. Scott and I had agreed that he was going to be a quiet guy like his daddy, and we would have to take special care that he did not get overlooked. Especially when his brother had such an “in your face” style when it came to his own needs.
We did and so we always knew what he wanted, even when he didn’t “ask” for it.
I am a former family therapist. I have an M.S. from Johns Hopkins in adolescent and family therapy and, I had one autistic client when I was doing social work in the foster care system in Baltimore during my schooling. Although not specifically trained in treating autism, I was certainly more than familiar with it and qualified to screen for it. In January it started creeping into the back of my mind here and there, but I told myself to quit diagnosing my son and let him progress on his own time. (I have tendency to diagnose and classify my friends and family, my own little obsessive game) At the end of January, I dropped him off in the nursery at church and as I was walking in the door I thought, “please cry when I leave so I know you are not autistic”. He didn’t cry. I told myself not to be paranoid, that he was probably fine, but if he was still not speaking more than the three or four words he had by his second birthday, in March, I would look into it.
In February my friend Julia, Chandler’s god mother, was over for a visit. She began to talk to me about how much she loved Chandler and wanted to connect with him, but that she was finding it difficult. She said, “I have a friend whose son was having a few problem, but they got him some extra help and he is doing great now”. I thought, “Shit, she sees it too”. Up until then no one had mentioned that they thought anything was wrong. I asked her if she was talking about autism and she said, “Oh, are you already thinking about this issue?”. I told her that I was taking him in for his 2 year appointment in a month and was going to see if his doctor saw any cause to worry.
It was a casual conversation, and she handled it very gracefully, but when she left I felt like I had an elephant sitting on my chest. I knew sitting on this any longer would be irresponsible of me. So I got out my DSM and read the diagnosis for Autism, then went online and pulled up the screening questionnaire that docs use when they suspect it and watched him very carefully over the next two weeks and every day felt more panic and depression. I waited a week to mention things to Scott, and even then did so really slowly. He was not worried, and reminded me that his mom kept saying that, “Scott had done that when he was a baby too”, about almost all of Chandler’s quirks. And since Scott was fine (just very, very shy growing up) Chandler would be too.
I talked to Webster’s god father, whom I trust immensely, and as he is a doctor, asked his advice on proceeding. He suggested I not mention my concerns to Chandler’s doc when I went into the appointment initially, and see what the doctor picked up on. That way I could know that he would have some objectivity and if he suspected it, I would know that I didn’t plant it.
Well we were only in the office about two minutes before his doc started asking me the screening questions for Autism, which I answered with specific examples rather than generalities. He said that he would like him to see a specialist that evaluated children’s speech “and other things”. He gave me her number and asked that if I had trouble getting an appointment, to call him and he would make sure I got in quickly. Neither of us mentioned our autism suspicions.
I decided at that point, I was not going to be the first one to say the “A” word, to any of the professionals, until they said it to me.
I called her that afternoon, and although her voice mail message said it could take up to a week to get a return call and a month to get an appointment with her, she called back that afternoon. She said she had talked to the doc and she had a cancellation the next day and wanted to see him. She asked me questions that I answered again with specific examples, and at one point in the conversation she said, “it sounds like you know what we are talking about”. I answered that I was a former therapist and familiar with problems that some children had and left it at that. Then there was a long awkward pause, as I am sure she knew that I knew, but didn’t understand why I didn’t finish up the thought. But I was determined not to call it Autism until they did.
So we went in to see her the following day and after about 20 minutes with him, she sat me down and began to talk to me about his development problems, his speech delay and that he seemed to be lacking some of the basic skills that lead to speech. She again stopped and asked me about my therapy background, and gave me the chance to tell her I suspected Autism, rather than her having to drop the “A” Bomb on me. But I still let it be awkward rather than lable him myself. So she finally got to the place in the conversation where you tell the client what kind of therapy that “autistic children benefit from”, and my heart just fell into my stomach. Even though I already knew, I still wanted her to say it was his hearing that was defective, not his brain.
I managed to keep it together until I got to the car, then spent a long time sobbing. I eventually went to the store and bought the book that she recommended and went home.
When I came in Scott asked me how it went. I couldn’t really answer him, so I just put the book on the desk in front of him and started crying. He gave me a hug for about a second and then started acting strange for him.
You see no husband in the history of marriage is as good as mine at taking care of his wife when she is sad. He should teach a class on it. No matter my level of distress, Scott can absorb it and it doesn’t rock him. He usually just holds me until I am better.
But at this moment, he gave me a begrudging one second hug and said, “I am gonna go hug Chandler” in a very strange tone of voice and left me sobbing on the couch. At that moment I realized that Scott had gone bye-bye. I fortunately had the presence of mind to make the decision that I would just have to be OK with whatever he did over the next few weeks seeing as he was much less prepared for this diagnosis than I was.
He floated around in a haze for a couple of days, and when I asked him his thoughts on how we should proceed, he couldn’t really answer. A few more days went by and I told him that I was starting to make decisions for Chandler with out him, and I wanted to give him a chance to give me his input. He said that he still couldn’t wrap his brain around the whole thing, and that he trusted me to make the right choices. He just spent a lot of time hugging our baby.
Somewhere during the course of the first week we got into a conversation that again compared Chandler to his daddy. It struck me that over the last several months I had been saying that the two were so alike, so that if Scott was normal, then Chandler must be normal too. Turns out that they are so alike because they are both on the Autism Spectrum. I met Scott in high school when he was 15 and terminally “shy”. He was sweet, but awkward and a bit nerdy and seemed to talk at people more than with them. He had a big crush on me, but he was of little interest to such a social butterfly as I.
We didn’t date until 10 years later. I had not seen him for 3 years and was surprised at what a bright, well-balanced, good looking man he had become. A very different guy than he was at 15. I always just thought of him as a very late bloomer.
The more we talked, and looked at Scott through the ASD lens, the more clear thing became. Eventually I went to bed and he stayed up all night reading everything he could on children and adults with Autistic Spectrum Disorders. In the morning his said his whole life made sense all of the sudden.
It still took him another two weeks before he could join me back in our world. I didn’t press him, just asked how he was doing and let him alone to process, then one day he re-engaged and started talking with me about what to do for Chandler.
It has been a year since then and it has been quite the emotional roller coaster. I think it was only last month that I started to begin to feel normal, but I certainly don’t feel all the way “normal” yet. It is a really hard truth to balance.
It is very hard not to live in the past and think, ‘If I had only ______, then he would have been fine’ and not to worry about the future, Chandler’s life, the effect on Webster, our finances, our marriage and on and on. The only way to keep from being overwhelmed is to just deal with Today. To trust that God has made Chandler, and all of us, just the way he wanted us to be, and do the best we can for Today.
Ironically, the best teacher on how to do that is my beautiful son, Chandler. One of the gifts of his autism is that he is always “in the moment”. 5 minutes ago was so 5 minutes ago. An hour from now is not even on his radar. He does not regret, and he does not worry. He is just happy to be jumping up and down.
We are so blessed to have a son to remind us of the joy of living.
February 21, 2005
Welcome Today Show Viewers
The Today Show has a link to us from their web site, so I would like to welcome new visitors who have found us this week.
I have a good deal of information that I needed to add to the site, and will go ahead and do that today so this site can be of good use to those looking for more firsthand information from ASD (Autistic Spectrum Disorder) families.
Thanks for coming and I encourage you to write me with questions, leave comments, check back, or grab our RSS feed so that you can know when the site is updated.
I have a good deal of information that I needed to add to the site, and will go ahead and do that today so this site can be of good use to those looking for more firsthand information from ASD (Autistic Spectrum Disorder) families.
Thanks for coming and I encourage you to write me with questions, leave comments, check back, or grab our RSS feed so that you can know when the site is updated.
February 20, 2005
NBCs Autism Week
The good people at the NBC are using all three of their networks to shine the spotlight on autism this week.
I encourage everyone to watch.
I will list the shows first by Network, then again by date.
Last night and tonight, the local stations are running, "Autism: The Hidden Epidemic".
On the Today show, they will run stories on autism every day this week:
MSNBC is also featuring autism every day this week:
CNBC has pieces over four days this week:
The NBC Nightly News will air some pieces on autism:
And for those of you who can speak spanish:
And now listed by date:
Do yourself a favor, set "Autism" up to auto record on your Tivo wishlist.
I encourage everyone to watch.
I will list the shows first by Network, then again by date.
Last night and tonight, the local stations are running, "Autism: The Hidden Epidemic".
NBC’s Owned & Operated Stations: 7-8pmThe 14 NBC stations of the NBC Universal Television Stations group will focus on the rising autism epidemic in a one-hour special. (Viewers should check their local program listings for individual airdates). Produced by KNBC in Los Angeles and hosted by anchor Michele Ruiz, the program will help educate viewers about the disorder and provide important information on possible causes, warning signs, treatments and therapies. The show also examines the enormous impact autism has on the entire family and documents one family's personal struggles, frustrations and triumphs as they care for their autistic son.
On the Today show, they will run stories on autism every day this week:
Monday, February 21
Today: (7am -10am)What is autism? Detection and the importance of early detection What causes autism?
Tuesday, February 22
Today:(7am -10am)The Autism diagnosis and how to set up a treatment team The Michael Marino story: When early intervention works
Wednesday, February 23
Today: (7am - 10am)Educational programs for treating children with autism How autism affects the family and siblings
Thursday, February 24
Today: (7am-10am)How to be an advocate for your child if they have autism Knowing the law in your community, and getting it to work for you
Friday, February 25
Today: (7am-10am)Bob and Suzanne Wright announce their Public Awareness Campaign Adults with Autism
MSNBC is also featuring autism every day this week:
Monday, February 21
MSNBC: (10:30am - 11am ET)Dr. Pat Levitt, director of the Vanderbilt Kennedy Center for Research discusses advances in the treatment of autism.
Tuesday, February 22
MSNBC: (10:30am-11am ET)Lee Grossman, president & CEO of the Autism Society of America has a 17-year-old autistic son and shares his personal crusade in raising awareness and funding for autism.
Wednesday, February 23
MSNBC: (10:30am - 11am ET)Gloria and Patrick Fay, parents of twin 7-year-old autistic boys, share their personal story of living with autism.
Thursday, February 24
MSNBC: (10:30am-11am ET)Actor Anthony Edwards, honorary board member of Cure Autism Now
Friday, February 25
MSNBC: (10:30am -11am ET)NBC Universal CEO Bob Wright
CNBC has pieces over four days this week:
Tuesday, February 22
CNBC: Power Lunch (12:30pm) and Closing Bell (4:45pm)The Autism Double Whammy: Paying the emotional and financial price.
Wednesday, February 23
CNBC: Power Lunch (12:30pm) and Closing Bell (4:45pm)Research and funding
Thursday, February 24
CNBC: Power Lunch (12:30pm)Serving the growing population of autistic children
CNBC: Closing Bell (4:45pm)Vernon Smith, 2002 Nobel Laureate in Economics, discusses his personal challenges with Asperger Syndrome
Friday, February 25
CNBC: Power Lunch (12:30) and Closing Bell (4:45) Vocational training for autistic teenagers
CNBC: Power Lunch NBC Universal CEO Bob Wright announces new public awareness campaign
The NBC Nightly News will air some pieces on autism:
Monday, February 21
Nightly News: (6:30pm-7pm ET)Robert Bazell reports on the reasons why autism has gone from a disorder no one knew of a few decades ago to an exploding emergency affecting 1.7 million Americans and their families.
Tuesday, February 22
Nightly News: (6:30pm-7pm)Robert Bazell revisits a California family that responded to their son's diagnosis by taking on the scientific establishment to make autism research a national priority.
Wednesday, February 23
Nightly News: (6:30pm-8pm)Robert Bazell reports on research at Yale University that reveals the inner workings of the minds of people with autism by watching where their eyes focus while watching human interactions in movies and videos.
And for those of you who can speak spanish:
Saturday, February 26
Telemundo: (7pm-8pm) "Autismo: Epidemia Silenciosa?": The show will provide viewers with important information on the disorder and explain how families can seek treatment for their autistic children. KVEA anchor Lucia Navarro will serve as host of the program, which will also explore how the Hispanic community deals with autism and the social stigma that is often associated with mental illness.
And now listed by date:
Sat., Feb. 19 and Sun., Feb. 20
NBC’s Owned & Operated Stations: 7-8pmThe 14 NBC stations of the NBC Universal Television Stations group will focus on the rising autism epidemic in a one-hour special.(Viewers should check their local program listings for individual airdates).Produced by KNBC in Los Angeles and hosted by anchor Michele Ruiz, the program will help educate viewers about the disorder and provide important information on possible causes, warning signs, treatments and therapies. The show also examines the enormous impact autism has on the entire family and documents one family's personal struggles, frustrations and triumphs as they care for their autistic son.
Monday, February 21
Today: (7am-10am)What is autism? Detection and the importance of early detection What causes autism?
MSNBC: (10:30am - 11am ET)Dr. Pat Levitt, director of the Vanderbilt Kennedy Center for Research discusses advances in the treatment of autism.
Nightly News: (6:30pm-7pm ET)Robert Bazell reports on the reasons why autism has gone from a disorder no one knew of a few decades ago to an exploding emergency affecting 1.7 million Americans and their families.
Tuesday, February 22
Today: (7am-10am)The Autism diagnosis and how to set up a treatment team The Michael Marino story: When early intervention works
MSNBC: (10:30am-11amET)Lee Grossman, president & CEO of the Autism Society of America has a 17-year-old autistic son and shares his personal crusade in raising awarenessand funding for autism.
CNBC: Power Lunch (12:30pm) and Closing Bell (4:45pm)The Autism Double Whammy: Paying the emotional and financial price.
Nightly News: (6:30pm-7pm)Robert Bazell revisits a California family that responded to their son's diagnosis by taking on the scientific establishment to make autism research a national priority.
Wednesday, February 23
Today: (7am - 10am)Educational programs for treating children with autism How autism affects the family and siblings
MSNBC: (10:30am - 11am ET)Gloria and Patrick Fay, parents of twin 7-year-old autistic boys, share their personal story of living with autism.
CNBC: Power Lunch (12:30pm)and Closing Bell (4:45pm)Research and funding
Nightly News:(6:30pm-8pm)Robert Bazell reports on research at Yale University that reveals the inner workings of the minds of people with autism by watching where their eyes focus while watching human interactions in movies and videos.
Thursday, February 24
Today: (7am-10am)How to be an advocate for your child if they have autism knowing the law in your community, and getting it to work for you
MSNBC: (10:30am-11am ET)Actor Anthony Edwards, honorary board member of Cure Autism Now
CNBC: Power Lunch (12:30pm)Serving the growing population of autistic children
CNBC: Closing Bell (4:45pm)Vernon Smith, 2002 Nobel Laureate in Economics, discusses his personal challenges with Asperger Syndrome
Friday, February 25
Today:(7am-10am)Bob and Suzanne Wright announce their Public Awareness CampaignAdults with Autism
MSNBC: (10:30am -11am ET)NBC Universal CEO Bob Wright
CNBC: Power Lunch (12:30) and Closing Bell (4:45)
Vocational training for autistic teenagers
CNBC: Power LunchNBC Universal CEO Bob Wright announces new public awareness campaign
Saturday, February 26
Telemundo: (7pm-8pm)"Autismo: Epidemia Silenciosa?": The show will provide viewers with important information on the disorder and explain how families can seek treatment for their autistic children. KVEA anchor Lucia Navarro will serve as host of the program, which will also explore how the Hispanic community deals with autism and the social stigma that is often associated with mental illness.
Do yourself a favor, set "Autism" up to auto record on your Tivo wishlist.
February 18, 2005
To those who get the email edition of my posts...
I know that the email's come to you with no formatting, just a big blob of text, and I just don't like that.
I am currently looking for a better program to use that will make the info more readable. Bear with me in the mean time.
I am currently looking for a better program to use that will make the info more readable. Bear with me in the mean time.
February 14, 2005
A Case for Mainstreaming
An Israeli mainstreaming success
By Aviva Bar-Am February 13, 2005
Students at Yad Hamoreh take care of their class pet. (Photo: Shmuel Bar-Am)
When her twin daughters started first grade at Jerusalem's Yad Hamoreh elementary school six and half years ago, Malka Cohen brought them to class - but didn't drop them off.
In fact, until school ended for the summer she spent every morning in the hall, their little hands clasped tightly in her own, waiting for the teacher to appear. That's because all three were petrified of a severely autistic little boy who wandered the halls shrieking like a banshee, and who often undressed and relieved himself on the floor. His name was Sapir.
Incredibly, if you peep into one of the classrooms at Yad Hamoreh today you will find Sapir quietly preparing his lessons or practicing with the school choir. And if you wander the corridors you will find it difficult - if not impossible - to distinguish between healthy youngsters and severely disabled autistic pupils, for the children mingle together as they run through halls that positively ring with laughter.
In 1998 Yad Hamoreh became the first conventional educational facility in the world to open its doors to severely disabled autistic children and to integrate them into day-long studies and activities with mainstream pupils.
While the first years were chaotic, today the school stands as the world's pioneer in the field of school integration with low-level autistic pupils. The endeavor was initially an unmitigated disaster. In class, where they had been placed with healthy pupils, autistic youngsters would rock back and forth, beat their heads against the walls, pull their classmates' hair, scream, and savagely bite both themselves and others.
Parents, children and teachers would routinely press their backs against the wall in order to avoid physical contact with the four autistic pupils who were the first to attend the school. "It was a no-win situation," states Anna Goren, a special education expert who was eventually asked to try and make the integration work.
Allowed a completely free hand, and armed with private donations and funds provided by the government, Goren set about discovering how children with autism and mainstream pupils could benefit from attending the same school.
First she replaced most of the staff with dedicated educators, and hired a large group of extraordinarily committed therapists to begin working with the tiny autistic population - six pupils, at the time. The new team was beefed up by the presence of young religious women, spending a year of national service as volunteers at Yad Hamoreh.
With the help of individualized behavior modification programs, an enviable adult/child ratio, a bevy of volunteers, constant reinforcement of a strict behavioral code and daily contact with the healthy students, pupils with autism slowly began developing patterns of normative conduct.
Simultaneously, mainstream youngsters were profiting from the school's tiny classes and a vast variety of special activities. In the process, they were acquiring a startling degree of tolerance and understanding. The staff were learning as well, and after a series of trials and errors realized that integration wasn't a goal - but rather a means by which they could help the pupils' progress and improve their quality of life at the same time.
Today, whenever possible, autistic pupils spend time in a regular classroom. When this isn't feasible for a specific child, he will join mainstream students in sports, dance, and other non-academic pursuits. If neither alternative is appropriate, the autistic child still participates with his or her peers in parties, school trips, performances and ceremonies.
Early on, experienced music therapist Shmuel Ben-Dov suggested pairing autistic children with healthy pupils during his sessions. The project was so successful that it was expanded to include other therapies as well, from animal therapy and occupational therapy to the active recesses especially structured for the autistic pupils.
In some sessions, the children work one-on-one; at others times groups of autistic children welcome either a few healthy youngsters or an entire mainstream class into their midst.
"In these special mixed activities and therapies, and for the first time in their lives, pupils with autism are at an advantage. Familiar with the structure of the sessions and the games, instruments and apparatus involved, they suddenly become leaders - willing hosts who demonstrate the routine to the other students," says Goren, who was later appointed principal of the school.
Ten-year-old Nathan finds it extraordinarily difficult to string words together. Last year Ben-Dov paired Nathan with a mainstream pupil, but it took some months before there was any meaningful interaction between the two.
Then one day, Nathan's partner had difficulty with the English instructions on a musical computer program. Nathan, who was familiar with the program and whose parents are native New Yorkers, stunned both Ben-Dov and his partner with his ability to translate the instructions from English into Hebrew and demonstrate how the program worked.
Mainstream pupils studying at Yad Hamoreh have the opportunity for extras to which they wouldn't otherwise have access, especially in an age of massive school cutbacks. At Yad Hamoreh, during the unusually long school day, they garden with their autistic peers, ride bikes together, cook and bake delicious food and enjoy musical adventures in Ben-Dov's unique, super-sophisticated classroom. While bringing their own savvy to all of the lessons and activities, the healthy youngsters learn to respect and admire the knowledge and abilities of their autistic peers.
The interactions are positively awesome - as anyone who has watched the youngsters having a great time together can testify. "At the beginning we had to beg the healthy pupils to participate in mixed therapy sessions," Goren told ISRAEL21c. "Today they are beating down the doors."
Yad Hamoreh offers mainstream students the opportunity to internalize values like tolerance, patience and a whole-hearted acceptance of people who are different from themselves.
Thanks in part to generous donations from abroad, Yad Hamoreh remains unique, as the only school in the world in which severely disabled autistic children can be found at every grade level and in significant numbers - today 35 out of a total school body of 193 pupils.
One of the children's parents is Tami Yona, Chairman of the Jerusalem branch of the National Association for Autistic Children (ALUT). Part of her job entails hosting visitors from the United States, Belgium and other countries who have heard about Yad Hamoreh's integrative methods and are interested in applying them in their home countries.
"After watching the children together, visitors are generally overwhelmed at what they consider our courage," she says. "We are considered very avant-garde for daring to teach severely dysfunctional autistic youngsters together with mainstream pupils."
Yona added that the school's success in Jerusalem has led to a unique phenomenon over the past couple of years: almost every autistic child in the city is now studying in an integrated framework.
Work has just begun on an extraordinary Yad Hamoreh project: a one-of-a-kind multi-sensory outdoor playground in which every structure will help autistic children focus, stimulate their use of language and improve their gross motor skills. The park will be so appealing, says music therapist Ben-Dov, that mainstream children will vie for the opportunity to join their autistic peers at play.
Last Independence Day, Sapir's parents got a big surprise. Sapir, who in the past couldn?t attend any kind of ceremony without screaming, who wasn't able to stand still for more than a second, who didn't follow, or understand instructions - Sapir was given the honor of holding the Israeli flag, and did so with pride. Small potatoes to most of us, perhaps - but a red letter day for Sapir, his family and his school.
For further information on the school's integrative activities and on the new playground, you can contact Ben-Dov at: shmuel@macam.ac.il
By Aviva Bar-Am February 13, 2005
Students at Yad Hamoreh take care of their class pet. (Photo: Shmuel Bar-Am)
When her twin daughters started first grade at Jerusalem's Yad Hamoreh elementary school six and half years ago, Malka Cohen brought them to class - but didn't drop them off.
In fact, until school ended for the summer she spent every morning in the hall, their little hands clasped tightly in her own, waiting for the teacher to appear. That's because all three were petrified of a severely autistic little boy who wandered the halls shrieking like a banshee, and who often undressed and relieved himself on the floor. His name was Sapir.
Incredibly, if you peep into one of the classrooms at Yad Hamoreh today you will find Sapir quietly preparing his lessons or practicing with the school choir. And if you wander the corridors you will find it difficult - if not impossible - to distinguish between healthy youngsters and severely disabled autistic pupils, for the children mingle together as they run through halls that positively ring with laughter.
In 1998 Yad Hamoreh became the first conventional educational facility in the world to open its doors to severely disabled autistic children and to integrate them into day-long studies and activities with mainstream pupils.
While the first years were chaotic, today the school stands as the world's pioneer in the field of school integration with low-level autistic pupils. The endeavor was initially an unmitigated disaster. In class, where they had been placed with healthy pupils, autistic youngsters would rock back and forth, beat their heads against the walls, pull their classmates' hair, scream, and savagely bite both themselves and others.
Parents, children and teachers would routinely press their backs against the wall in order to avoid physical contact with the four autistic pupils who were the first to attend the school. "It was a no-win situation," states Anna Goren, a special education expert who was eventually asked to try and make the integration work.
Allowed a completely free hand, and armed with private donations and funds provided by the government, Goren set about discovering how children with autism and mainstream pupils could benefit from attending the same school.
First she replaced most of the staff with dedicated educators, and hired a large group of extraordinarily committed therapists to begin working with the tiny autistic population - six pupils, at the time. The new team was beefed up by the presence of young religious women, spending a year of national service as volunteers at Yad Hamoreh.
With the help of individualized behavior modification programs, an enviable adult/child ratio, a bevy of volunteers, constant reinforcement of a strict behavioral code and daily contact with the healthy students, pupils with autism slowly began developing patterns of normative conduct.
Simultaneously, mainstream youngsters were profiting from the school's tiny classes and a vast variety of special activities. In the process, they were acquiring a startling degree of tolerance and understanding. The staff were learning as well, and after a series of trials and errors realized that integration wasn't a goal - but rather a means by which they could help the pupils' progress and improve their quality of life at the same time.
Today, whenever possible, autistic pupils spend time in a regular classroom. When this isn't feasible for a specific child, he will join mainstream students in sports, dance, and other non-academic pursuits. If neither alternative is appropriate, the autistic child still participates with his or her peers in parties, school trips, performances and ceremonies.
Early on, experienced music therapist Shmuel Ben-Dov suggested pairing autistic children with healthy pupils during his sessions. The project was so successful that it was expanded to include other therapies as well, from animal therapy and occupational therapy to the active recesses especially structured for the autistic pupils.
In some sessions, the children work one-on-one; at others times groups of autistic children welcome either a few healthy youngsters or an entire mainstream class into their midst.
"In these special mixed activities and therapies, and for the first time in their lives, pupils with autism are at an advantage. Familiar with the structure of the sessions and the games, instruments and apparatus involved, they suddenly become leaders - willing hosts who demonstrate the routine to the other students," says Goren, who was later appointed principal of the school.
Ten-year-old Nathan finds it extraordinarily difficult to string words together. Last year Ben-Dov paired Nathan with a mainstream pupil, but it took some months before there was any meaningful interaction between the two.
Then one day, Nathan's partner had difficulty with the English instructions on a musical computer program. Nathan, who was familiar with the program and whose parents are native New Yorkers, stunned both Ben-Dov and his partner with his ability to translate the instructions from English into Hebrew and demonstrate how the program worked.
Mainstream pupils studying at Yad Hamoreh have the opportunity for extras to which they wouldn't otherwise have access, especially in an age of massive school cutbacks. At Yad Hamoreh, during the unusually long school day, they garden with their autistic peers, ride bikes together, cook and bake delicious food and enjoy musical adventures in Ben-Dov's unique, super-sophisticated classroom. While bringing their own savvy to all of the lessons and activities, the healthy youngsters learn to respect and admire the knowledge and abilities of their autistic peers.
The interactions are positively awesome - as anyone who has watched the youngsters having a great time together can testify. "At the beginning we had to beg the healthy pupils to participate in mixed therapy sessions," Goren told ISRAEL21c. "Today they are beating down the doors."
Yad Hamoreh offers mainstream students the opportunity to internalize values like tolerance, patience and a whole-hearted acceptance of people who are different from themselves.
Thanks in part to generous donations from abroad, Yad Hamoreh remains unique, as the only school in the world in which severely disabled autistic children can be found at every grade level and in significant numbers - today 35 out of a total school body of 193 pupils.
One of the children's parents is Tami Yona, Chairman of the Jerusalem branch of the National Association for Autistic Children (ALUT). Part of her job entails hosting visitors from the United States, Belgium and other countries who have heard about Yad Hamoreh's integrative methods and are interested in applying them in their home countries.
"After watching the children together, visitors are generally overwhelmed at what they consider our courage," she says. "We are considered very avant-garde for daring to teach severely dysfunctional autistic youngsters together with mainstream pupils."
Yona added that the school's success in Jerusalem has led to a unique phenomenon over the past couple of years: almost every autistic child in the city is now studying in an integrated framework.
Work has just begun on an extraordinary Yad Hamoreh project: a one-of-a-kind multi-sensory outdoor playground in which every structure will help autistic children focus, stimulate their use of language and improve their gross motor skills. The park will be so appealing, says music therapist Ben-Dov, that mainstream children will vie for the opportunity to join their autistic peers at play.
Last Independence Day, Sapir's parents got a big surprise. Sapir, who in the past couldn?t attend any kind of ceremony without screaming, who wasn't able to stand still for more than a second, who didn't follow, or understand instructions - Sapir was given the honor of holding the Israeli flag, and did so with pride. Small potatoes to most of us, perhaps - but a red letter day for Sapir, his family and his school.
For further information on the school's integrative activities and on the new playground, you can contact Ben-Dov at: shmuel@macam.ac.il
My boy's big giant head
Clues to autism’s mysteries
By Sandra Blakeslee The New York Times
Thursday, February 10, 2005
NEW YORK There comes a point in every great mystery when a confusing set of clues begins to narrow. For scientists who study autism, that moment may be near, thanks to a combination of new tools for examining brain anatomy and of old-fashioned keen observation.
Within the last year, several laboratories have reported finding important new clues about the mysterious syndrome that derails normal childhood brain development. For the first time, they say, a coherent picture is emerging.
In autism, subtle brain abnormalities are present from birth. Infants and toddlers move their bodies differently. From 6 months to 2 years, their heads grow much too fast. Parts of their brain have too many connections, while other parts are underconnected.
Moreover, their brains show signs of chronic inflammation in the same areas that show excessive growth. The inflammation appears to last a lifetime.
‘‘Autism is still a confusing disorder, but one thing is now clear,’’ said Pat Levitt, a neuroscientist who is the director of the Kennedy Center for Research on Human Development at Vanderbilt University. ‘‘There is a specific disruption of circuitry in brain development.’’
To that end, Levitt and two dozen leading brain researchers held a three-day ‘‘autism summit’’ in Malibu, California, sponsored by the Cure Autism Now Foundation, to discuss this emerging view and to plan collaborative studies. The meeting ended Sunday.
People with autism have great difficulty with social interaction. Some cannot speak. Many are clumsy. A common trait is obsessive attention to certain details. Symptoms can be severe to mild.
Diagnoses of the disorder have increased in recent years, although no one knows why. Researchers agree that an unknown number of genes interact with unidentified environmental factors to produce the disorder. The new clues focus on brain development and circuitry, and especially on the brain’s white matter. White matter contains fibers that connect neurons in separate areas of the brain, whereas gray matter contains the neurons themselves. ‘‘You can think of this distinction as analogous to that between cables, or white matter, and circuit boards, or gray matter, inside a computer,’’ said Matthew Belmonte, an autism researcher at the University of Cambridge in England. ‘‘Even though each individual circuit board may be intact, if the cables are disrupted then the computer can’t function.’’
Using a new technique called morphometric analysis, in which post-mortem brain tissue is divided into tiny parcels and examined, Martha Herbert, a pediatric neurologist at Harvard Medical School, found an anomaly in the white matter of autistic brains — it is asymmetrical.
In autism, white matter grows normally until 9 months, Herbert said. Then it goes haywire. By 2 years, excessive white matter is found in the frontal lobes, the cerebellum and association areas, where higher-order processing occurs.
Another clue was reported last year by Eric Courchesne, a neuroscientist at the University of California, San Diego. Using a simple tape measure, he found that newborns who later developed autism had smaller head circumferences than average. From 1 to 2 months of age, their brains suddenly begin to grow rapidly. Another spurt occurs between 6 months and 2 years, giving rise to exceptionally large heads.
The rate of brain growth gradually slows from 2 to 4 years, reaching a peak a year later. A 5-year-old with autism has the same size brain as a normal 13-year-old. But by mid-adolescence, when normally developing children catch up, the autistic child’s brain is again comparatively smaller.
Ruth Carper, who works with Courchesne, went on to show that the frontal lobes, the slowest and latest brain region to develop, have the biggest size increase of all. But the nerve cells in this region, which is responsible for social reasoning and decision making, are actually much smaller than normal and ‘‘underpowered,’’ Carper said.
A third clue, from the laboratory of Marcel Just, a neuroscientist at Carnegie Mellon University, reaffirms the odd circuitry in autism. In a study published in November, he found that people with autism remembered letters of the alphabet in a part of the brain that ordinarily processes shapes.
‘‘Distinct brain areas work independently,’’ Just said. ‘‘People with autism are good at details but bad at conceiving the whole.’’
Skewed brain wiring could explain a fourth clue: clumsiness. Philip Teitelbaum, an expert on human movement patterns at the University of Florida, studies how babies with autism learn to roll over, sit up, crawl and walk. By looking at videotapes of their early months, before their disorders are diagnosed, he finds that autistic children use unusual strategies for locomotion. It is as if the parts of their brains that control movements are not properly connected.
By Sandra Blakeslee The New York Times
Thursday, February 10, 2005
NEW YORK There comes a point in every great mystery when a confusing set of clues begins to narrow. For scientists who study autism, that moment may be near, thanks to a combination of new tools for examining brain anatomy and of old-fashioned keen observation.
Within the last year, several laboratories have reported finding important new clues about the mysterious syndrome that derails normal childhood brain development. For the first time, they say, a coherent picture is emerging.
In autism, subtle brain abnormalities are present from birth. Infants and toddlers move their bodies differently. From 6 months to 2 years, their heads grow much too fast. Parts of their brain have too many connections, while other parts are underconnected.
Moreover, their brains show signs of chronic inflammation in the same areas that show excessive growth. The inflammation appears to last a lifetime.
‘‘Autism is still a confusing disorder, but one thing is now clear,’’ said Pat Levitt, a neuroscientist who is the director of the Kennedy Center for Research on Human Development at Vanderbilt University. ‘‘There is a specific disruption of circuitry in brain development.’’
To that end, Levitt and two dozen leading brain researchers held a three-day ‘‘autism summit’’ in Malibu, California, sponsored by the Cure Autism Now Foundation, to discuss this emerging view and to plan collaborative studies. The meeting ended Sunday.
People with autism have great difficulty with social interaction. Some cannot speak. Many are clumsy. A common trait is obsessive attention to certain details. Symptoms can be severe to mild.
Diagnoses of the disorder have increased in recent years, although no one knows why. Researchers agree that an unknown number of genes interact with unidentified environmental factors to produce the disorder. The new clues focus on brain development and circuitry, and especially on the brain’s white matter. White matter contains fibers that connect neurons in separate areas of the brain, whereas gray matter contains the neurons themselves. ‘‘You can think of this distinction as analogous to that between cables, or white matter, and circuit boards, or gray matter, inside a computer,’’ said Matthew Belmonte, an autism researcher at the University of Cambridge in England. ‘‘Even though each individual circuit board may be intact, if the cables are disrupted then the computer can’t function.’’
Using a new technique called morphometric analysis, in which post-mortem brain tissue is divided into tiny parcels and examined, Martha Herbert, a pediatric neurologist at Harvard Medical School, found an anomaly in the white matter of autistic brains — it is asymmetrical.
In autism, white matter grows normally until 9 months, Herbert said. Then it goes haywire. By 2 years, excessive white matter is found in the frontal lobes, the cerebellum and association areas, where higher-order processing occurs.
Another clue was reported last year by Eric Courchesne, a neuroscientist at the University of California, San Diego. Using a simple tape measure, he found that newborns who later developed autism had smaller head circumferences than average. From 1 to 2 months of age, their brains suddenly begin to grow rapidly. Another spurt occurs between 6 months and 2 years, giving rise to exceptionally large heads.
The rate of brain growth gradually slows from 2 to 4 years, reaching a peak a year later. A 5-year-old with autism has the same size brain as a normal 13-year-old. But by mid-adolescence, when normally developing children catch up, the autistic child’s brain is again comparatively smaller.
Ruth Carper, who works with Courchesne, went on to show that the frontal lobes, the slowest and latest brain region to develop, have the biggest size increase of all. But the nerve cells in this region, which is responsible for social reasoning and decision making, are actually much smaller than normal and ‘‘underpowered,’’ Carper said.
A third clue, from the laboratory of Marcel Just, a neuroscientist at Carnegie Mellon University, reaffirms the odd circuitry in autism. In a study published in November, he found that people with autism remembered letters of the alphabet in a part of the brain that ordinarily processes shapes.
‘‘Distinct brain areas work independently,’’ Just said. ‘‘People with autism are good at details but bad at conceiving the whole.’’
Skewed brain wiring could explain a fourth clue: clumsiness. Philip Teitelbaum, an expert on human movement patterns at the University of Florida, studies how babies with autism learn to roll over, sit up, crawl and walk. By looking at videotapes of their early months, before their disorders are diagnosed, he finds that autistic children use unusual strategies for locomotion. It is as if the parts of their brains that control movements are not properly connected.
February 11, 2005
Hope
"'For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope. Then you will call upon Me and come and pray to Me, and I will listen to you. You will seek Me and find Me when you search for Me with all your heart." - Jeremiah 29:11-13
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