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January 16, 2002       News Morgue Search  www.feat.org/search/news.asp

AWARENESS

·        Joe Mantegna Rules In Favor Of Autism Funding

·        Challenges of Autism

·        Reader’s Posts

 

 

Joe Mantegna Rules In Favor Of Autism Funding

“Autism [prevalence] is far higher than we thought. . .and this increase is not simply attributable to better diagnoses.”

·        Dr. David Amaral, Research Director

of the M.I.N.D. Institute

 

[By John Morgan, Spotlight Health, USA Today, with medical adviser Stephen A. Shoop, M.D.]

http://www.usatoday.com/news/healthscience/hsphoto.htm

On the new CBS series First Monday, veteran actor Joe Mantegna plays a Supreme Court justice whose pivotal vote is key in an evenly divided bench.  But when it comes to his first daughter Mia, Mantegna needs little time to deliberate. Mia wins on the merits.

“She’s strong and beautiful and she loves doing homework,” says Mantegna, who won a Tony Award for his role in Glengarry Glen Ross. “She is the additional glue in our family. And we like to joke that she’s a cat in a world of dogs.”

Perhaps even more so than most 14-year olds because Mia is autistic.

Autism is a neurodevelopmental disorder that affects early brain

development, often causing communication difficulties and problems with social interactions. Because the degree of these challenges varies greatly from individual to individual, autism is defined as a spectrum disorder — a group of disorders with similar features.

“Mia is high functioning and attends a mainstream regular classroom,” says Mantegna, 54. “That was a big decision because we had to weigh the benefits of a regular class versus special education. It was very intuitive — it felt right so we did it.”

And according to Mantegna, Mia has blossomed. “She’s doing really well and I think the process of inclusion helps everyone, not just Mia.”

Mantegna says he wasn’t worried about kids teasing Mia. “I don’t necessarily believe kids are cruel,” says Mantegna, who has gone to Mia’s class and given talks about autism. “I think when you talk to the kids and explain autism to them they rise to the occasion. God bless those kids who are best friends to an autistic child.”

But things didn’t always look so bright for Mantegna and his wife Arlene.

First born

Mia Mantegna was born three months premature after her umbilical cord became infected. She weighed only one pound 13 ounces at birth and spent the next three months in intensive care. Although the Mantegnas didn’t know it, low birth weight can put a newborn at greater risk for autism.

“We’re just lucky she’s alive,” says Mantegna. “Twenty years ago she wouldn’t have lived. Mia has an incredible will.”

The Mantegnas began to realize Mia might be autistic when they noticed her speech development was lagging behind. Parents typically discover this language delay around age two or three when most infants begin verbalizing more.

Mantegna remembers lots of tests being run to rule out other causes, including the possibility that Mia might be deaf. But Mia wasn’t hearing impaired. Instead she had some of the classic symptoms of autism, including:

Delayed social interaction — the child fails to initiate or acknowledge interpersonal communications. Often this is as simple as not making eye contact.

Sensory processing abnormalities — The child has a heightened (or decreased) sensitivity involving as many as all five senses. In Mia’s case, her hearing was hypersensitive, and she would react strongly to music until auditory therapy helped her adjust. “Now she loves music and has perfect pitch,” adds Mantegna.

Repetitive routines — Rocking back and forth, hand movements or other repetitious motions.

According to the National Institute of Health (NIH), Mia is one of an estimated 400,000 people with autism. Approximately one out of every 500 people are is afflicted, making autism the third most common developmental disability.

And the disorder may be even more prevalent than previously thought.

“The true number of those with autism is far higher than we thought,”

reports Dr. David Amaral, Research Director of the Medical Investigation of Neurodevelopmental Disorders (MIND) Institute at the University of California, Davis. “We now believe the figure may be closer to one out of every 150 people. And this increase is not simply attributable to better diagnoses — there is something out there causing this increase.”

While scientists have yet to identify the causes of autism or provide a cure, substantial advances have been made in the past five years in the study of autism.

“This is really largely due to parent advocacy,” says Amaral. “Cure Autism Now (CAN) has been very important in leading funding initiatives and genetic research. And the National Alliance for Autism Research (NAAR) has championed the need for postmortem research with their tissue program.”

“The awareness levels are increasing,” says Mantegna. “Children diagnosed today have so many resources compared to ten years ago. It is really important to do the research. Figure out what you can live with and make it work for you and your child.”

And more research breakthroughs are appearing on the horizon.

Moving forward

Last November CAN and NAAR teamed up with the MIND Institute to sponsor the first international meeting of autism research. “Autism is so incredibly complex that it is unlikely that one single lab will solve it,” says Amaral. “It’s a huge information processing problem to understand all the factors influencing autism. That’s why it was so important to gather together our research community.”

Over 600 scientists attended the San Diego conference and presented over 225 papers. But still Amaral laments that the scientific knowledge of autism is still meager.

“Right now we’re on a huge fishing expedition looking for causes,” says Amaral. “Researchers have looked at over a 100,000 brains for Alzheimer’s. In autism, we’ve looked at between 55-60 brains. It’s shocking.  We need more funding. For any topic in autism, we need more research and hard data.”

Amaral is pleased that the NIH is joining the funding effort and “mounting a full court press” by creating centers for excellence in autism.

“We exploring some very exciting areas of research — including the effects of mercury and PCBs and autism,” reports Amaral. “There are probably 5-20 genes influencing autism as well as environmental factors. We’re very keen on developing a bio-marker to detect infants who may be susceptible to autism and perhaps some day prevent it from developing.”

In the meantime, early diagnosis and intervention are critical.  Research indicates that treating infants as young as 18 months provides the best hope.

“I credit Mia and my wife Arlene for my daughter’s success because every day can be a challenge,” says Mantegna. “Arlene is so involved in Mia’s life. It’s that incredible bond between mother and child. We’re all very lucky.”

Mantegna is especially proud of Mia’s younger sister Gina. “I can’t tell you how much I admire her,” says Mantegna. “ She is loving and compassionate — an old soul who embraces all. And I think a lot of that comes from her life with her sister.”

“It may sound real cliché, but I do believe in a divine power and you’re only given what you can handle,” adds Mantegna.

And Mantegna seems to be handling his own series with great excitement.

“I admit that I’ve always avoided series TV — partly because I enjoyed the variety of movies and stage work and partly because of my daughter.  Traveling is less enjoyable now and I want to be more involved in my daughters’ lives. First Monday was the right thing at the right time. Just like the birth of my daughters.

 

 

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Challenges of Autism

[By Heather Wilkerson, The Wilson Daily Times, North Carolina. Thanks to Lynda Schott.] http://www.wilsondaily.com/cgi-bin/contents.pl?ed=011202&id=Li&sec=Lifestyle &fmt=web <- - address ends here.

When Laura Taylor goes to the Wilson County Public Library, she picks out a book and wants to turn each page with one finger in a ritualistic method, even if it’s 500 pages. Then she might start laughing uncontrollably or, for a reason only known to Laura, hit her sister.

On a recent trip to the library, Laura picked up the small American flag on display at the counter and slammed it back down. The librarian spoke sharply to Laura. Laura just walked away, unfazed by what the clerk had said.

On the outside, Laura looks like a regular 10-year-old girl. She has no physical features that would cause a person to think anything was wrong with her.

But there is something wrong with Laura — something she and her family deal with each and every day of their lives.

Laura has autism. And she always will.

Autism, as defined by the Autism Society of North Carolina, is a

developmental disability that affects a person’s ability to properly understand what they see, hear and otherwise sense. The result of a neurological disorder that affects functioning of the brain, autism and its associated behaviors occur in about 1 in 500 people.

People are born with autism. There is no cure, but the disorder can be managed.

Learning how to manage Laura’s autism has been an ongoing learning experience for her family. Laura lives with her mother, Melissa Moss, her stepdad, Craig Moss and her sister, Britt.

It’s been seven years since Laura was diagnosed with autism. Over that period, Melissa Moss has become an expert of sorts, embracing all the information she can to learn about her daughter’s condition.

Moss has a vast knowledge of autism. She has served as secretary on the board of directors for the Autism Society of North Carolina and is the contact for Wilson families dealing with autism.

When she lived in Edgecombe County, Moss wanted to start a tri-county (Wilson, Nash, Edgecombe) support group but had a hard time getting participation from all three places. So the support group ended up being just the Edgecombe County unit.

When Moss moved to Wilson, she was able to start the Wilson County unit. She distributed fliers to the Wilson County Schools central office to be passed out to all classes with autistic children. The group’s first meeting was Sept. 11. With the events that happened in New York that day, turnout was not good. But the support group has met three times since then with 12-20 people attending.

Moss started the support group, she said, to help others through the struggle of trying to raise an autistic child.

“I want to make them aware of services out there and tell them what I know,” Moss said. “I want them to know the things that I had to find out by calling and digging for information.”

Teresa Peterson has been to a couple of the support group meetings.

“It is interesting to sit there and listen to people talk about their

challenges,” she said. “You really can learn a lot from each other.”

Peterson was excited to see not only parents of autistic children, but teachers, siblings and other interested parties there.

Peterson’s son, 8-year-old Nathan, is a high-functioning autistic child with Asperger Syndrome. Asperger Syndrome is a disorder named for physician Hans Asperger, who in 1944 published a paper that described a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors.

Nathan does exhibit common characteristics of autism — the need for set routines, the inability to deal with change sensory problems, inappropriate outbursts and trouble with social cues — but he is in a regular third-grade classroom at Wells Elementary School. He, like Laura, exhibits no physical features that would make people think anything was wrong with him.

Nathan tests at or above grade level in some subjects, his mother said. Like many children with Asperger Syndrome, he particularly likes logical subjects, such as math and science. Nathan’s problem is with more abstract subjects such as English. For his problem areas, Nathan is pulled from his classroom for one-on-one instruction.

There are only a couple of children in the Wilson County School system with Asperger Syndrome, so the Peterson family is always looking for support and services available for Nathan.

Christy Grant, the transition coordinator with Wilson County Schools, helped Peterson with a list of services available to her. Peterson learned her son could get Social Security disability and Medicaid. The family has gone through the interview process with Wilson-Greene Mental Health to get services from that agency, too.

Peterson can share all of this knowledge with the support group.

“I’m anxious to see the group draw in more people,” she said, “so we

can not only educate each other, but also the general public.”

Raising an autistic child is a constant learning process, Peterson said.

“Every day with Nathan is different,” she said. “Even though he is very much on a schedule, every day is different.”

Dianne Stott is the mother of an 11-year-old autistic child. She, too, views the support group as a “coming together of minds.”

“It offers so much support,” she said. “You can laugh and cry with people who are going through the same things you are. We can put our minds together and get the word out about resources.”

Stott said she would be excited to see the group grow. “It’s such a good place to find ideas. They’ll be missing out on the support they can get if they don’t come.”

The group meets monthly at Raleigh Road Baptist Church, where Laura and her family are members.

The next meeting is Jan. 15 at 7 p.m.

·        Article concludes at:

http://www.angelfire.com/on/FEATNews/ChallengesofAutism.htm

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Readers’ Posts

Seven yr old ASD daughter uses a computer “Crayola Trackball” due to her

motor problems.  It has been a godsend really.  Ours has broken and we

cannot find another.  Amazon.com, other sites have discontinued them.  Does

anyone know a store in NC or a website where we can find this?

Hello, I just want to let everyone know that I have moved my site to a new

domain and server.  Here is my new site address.  Thank you for visiting.

We are from the southern part of Boston and sometimes I wonder if whether we

are the only ones here who needs help. I am looking for some other parents

or parent group from the southern part of highways 128-93 or from the

Central part of Boston (Needham, Newton, Sudbury, Brighton, Milton, Randolph

I am looking for a speech pathologist to work with my 5 year old autistic

son whose also has dyspraxia.  We live in the Bay area and I would like any

Looking to join an in-home ABA team in New Jersey, Manalpan and surrounding area. I have been part of a successful in home team headed by Dr. Beth Glasberg for the past two years; training included ABA/ VB, NET, DTT with errorless earning. At Douglas Developmental Disability Center at Rutgers University I was a field worker. I am a substitute teacher. Call (732)

Looking for individual to be trained to work with autistic 6 year old boy

modified and individualized lovaas behavioral therapy.  6 month commitment

needed.  Paid position ~ 20+ hr/week: perks: loving little boy.  Please

 

 

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