The Autism News

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Dr. Temple Grandin (Photo by See Xiong)

By Natalie Johnson | UW Oshkosh Today

Temple Grandin, the most well-known American with autism, urged teachers, parents and students to avoid getting “hung up on labels” during her standing-room-only keynote address Saturday at a University of Wisconsin Oshkosh special education conference.

Grandin advocated for building on students’ strengths no matter the disability label.

The “Planting the Seeds of Inclusion: Supporting All Children” conference — hosted by the UWO’s curriculum and instruction, reading and special education departments — brought together educators, therapists, parents and other professionals who support the growth and learning of all children, from birth through age 22, in inclusive settings.

Grandin said her own brain works in an associative — not linear — manner; she thinks in pictures, not words.

“It’s like Google for pictures,” she added.

Grandin said that if a child with autism is fixated on a certain topic, such as horses or NASCAR racing, teachers should build reading and math lessons around that topic to keep the child interested. She also said early intervention and teaching children with autism how to take turns are key to success.

“You can’t take the geek out of a geek,” she said. “But you can teach them to be polite geeks.”

Following Grandin’s address, conference attendees took part in breakout sessions, covering topics such as identifying students for special education services and Wisconsin’s new definitions of learning disabilities.

Source: http://www.uwosh.edu/news/?p=2549

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The Autism News | English

His master’s voice … Bonnie the dog with a picture of Luke (Pic: John Grainger  | The Daily Telegraph )

By Chelsea White | The Daily Telegraph

SHE was his constant companion who helped him navigate the confusing world his autism had created.

So when Bonnie the dog finally came home alone and wet, Luke Selwyn’s parents knew something terrible had happened to their boy.

Police and volunteers had been searching the family’s property in Wilberforce, northwest of Sydney, for hours when Bonnie finally came home just before 11.30pm.

It would take police divers another hour to find the six-year-old’s body in the neighbour’s dam early yesterday.

It is believed the severely autistic boy, who could speak only a few words, had mistaken the muddy dam for a swimming pool.

“He had just started swimming classes and he was doing really well,” his aunt Leesha Cooke said yesterday. “He was being awarded gold stars.”

The classes were part of the intensive therapy his family had been committed to since he was diagnosed with autism.

While Luke barely spoke, therapy had helped him go from a boy who could not interact to one who would give you a cheeky little smile now and then, Ms Cooke said.

“Children with autism like what is familiar and they repeat things over and over again. The dam must have looked like the pool he was learning in and he just went for a swim.”

Luke’s parents Fiona and Tom Selwyn had spent everything they had on therapy for Luke and his four-year-old brother Jarrad, who also has a form of autism.

“My sister and her husband didn’t care that he didn’t talk, they didn’t care that he wasn’t perfect and while he took a lot of love from them he gave them a love that most parents take for granted,” Ms Cooke said.

She said the family’s loss was made worse as they spent all of his short life watching over him.

At the moment Luke’s nine-year-old sister Jessica blames herself for the tragedy.

While only in Year 4, Jessica has always been the self-appointed protector of her brothers and because Luke managed to sneak out while the family was burying her pet axolotl she felt it was her fault.

“I just miss my brother,” she said clutching a photo of her brother.

His aunt, however, sees Luke’s death somewhat differently.

“I want to get him back for them but now he is free, he is free from autism and he doesn’t have to suffer any more,” she said.

Source: http://www.dailytelegraph.com.au/news/tears-for-luke-selwyn-a-little-boy-who-loved-water/story-e6freuy9-1225837522996

Luke Selwyn appeal

Last week we learned about the tragic death of little Luke Selwyn.

Luke was just six years old and had autism. He wandered away from his family’s home north west of Sydney on Thursday evening. Police searched for several hours before discovering his body in a dam neighbouring his parents’ property.

Friends Chantelle Jary and Louise McDermott have set up a benefit account for Luke’s funeral and to help the family with living expenses during this tragic time.

Bendigo Bank, North Richmond

Luke Selwyn Benefit Account
BSB: 633 000
ACC: 139544662

Source: http://au.tv.yahoo.com/sunrise/factsheets/article/-/article/6899977/luke-selwyn-appeal/

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The Autism News | English

By Associated Press | Business Week

The Supreme Court will decide whether drug makers can be sued by parents who claim their children suffered serious health problems from vaccines.

The justices on Monday agreed to hear an appeal from parents in Pittsburgh who want to sue Wyeth over the serious side effects their daughter, six months old at the time, allegedly suffered as a result of the company’s diphtheria, tetanus and pertussis vaccine.

The 3rd U.S. Circuit Court of Appeals in Philadelphia ruled against Robalee and Russell Bruesewitz, saying a 1986 federal law bars their claims.

That law set up a special vaccine court to handle disputes as part of its aim of insuring a stable vaccine supply by shielding companies from most lawsuits.

Wyeth, now owned by Pfizer, Inc., prevailed at the appeals court but also joined in asking the court to hear the case, saying it presents an important and recurring legal issue that should be resolved.

The Obama administration joined the parties in calling for high court review, although the government takes the side of the manufacturers.

Only one state appeals court, the Georgia Supreme Court, has ruled that families can sue in a vaccine case. The vaccine industry has fiercely opposed the Georgia ruling in the case of Marcelo and Carolyn Ferrari. They claim their son suffered neurological damage after receiving vaccine booster shots made by pharmaceutical companies Wyeth and GlaxoSmithKline that contained the preservative thimerosal.

The family has since withdrawn its lawsuit, possibly in an effort to avoid an unfavorable Supreme Court ruling, although the Georgia court’s opinion allowing similar lawsuits remains in force.

The court did not act on the companies’ appeal Monday, but the decision in the other case almost certainly will apply to the Georgia case.

According to the lawsuit, Hannah Bruesewitz was a healthy infant until she received the vaccine in April 1992. Within hours of getting the DPT shot, the third in a series of five, the baby suffered a series of debilitating seizures. Now a teenager, Hannah suffers from residual seizure disorder, the suit says.

The vaccine court earlier rejected the family’s claims.

Wyeth lost another high court fight last year over whether federal law barred lawsuits against drug makers. That case, involving a botched injection, asked whether federal law included an implicit prohibition on the lawsuits. The court said it did not.

In this appeal, however, Congress clearly laid out how claims over vaccines were to be made, and the court has repeatedly ruled against plaintiffs when Congress has explicitly sought to bar lawsuits.

Other than the Georgia court, state and federal courts have uniformly invoked a provision of the 1986 federal law, which seems to bar most lawsuits against vaccine makers.

The idea behind the National Childhood Vaccine Injury Act was to ensure a stable supply of childhood vaccines by shielding drug makers from most lawsuits, and setting up a federal vaccine court to handle disputes. The law would serve to block state laws that otherwise would give families the ability to sue the manufacturers.

In recent years, the legal fight has frequently come from families of autistic children claiming that mercury-based thimerosal is linked to autism. Numerous studies have addressed vaccines and autism and found no link, including with the preservative.

Thimerosal has been removed in recent years from standard childhood vaccines, except flu vaccines that are not packaged in single doses.

Last year, special masters appointed by the vaccine court concluded that vaccines aren’t to blame for autism, disappointing thousands of families hoping to win compensation and others who remain convinced of a connection.

But the vaccine court still must rule on additional cases that argue that vaccines with thimerosal are to blame, if the mercury reached and damaged brain cells.

The case, to be argued in the fall, is Bruesewitz v. Wyeth, 09-152.

Source: http://www.businessweek.com/ap/financialnews/D9EAHS3G0.htm

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The Autism News | English

Laura Lee McIntyre of the University of Oregon studies the impacts of autism in families, especially on mothers and older siblings.

Controlled study finds a possible early warning signs for autism spectrum disorders within families

By Jim Barlow | University of Oregon

A new study suggests a trend toward developing hyperactivity among typically developing elementary-school-aged siblings of autistic preschoolers and supports the notion that mothers of young, autistic children experience more depression and stress than mothers with typically developing children.

While the impact on older siblings was not statistically significant, the trend may indicate the presence of symptoms associated with broader observable autism characteristics seen in previous studies, says Laura Lee McIntyre, a professor and director of the University of Oregon’s school psychology program. The study was published in the March issue of the journal Focus on Autism and Other Developmental Disabilities.

Previous research projects have netted mixed findings, but many suggest that families dealing with autism — especially brothers and sisters of an autistic child — also experience symptoms similar to autism: widespread abnormalities of social interactions, communication and behavior.

The new study gives a fresh look at autism’s early effects on families by comparing control and experimental groups whose ages, education and socioeconomic situations were virtually identical. Twenty families had a preschooler (ages 2-5 years old) diagnosed with autism and a typically developing older elementary school sibling (6-10); the control group of 23 families did not have an autistic child. Older children with diagnosed learning or mental disabilities were excluded.

“We know there are risk factors, but we don’t know if they result from having a child with autism, or if there are genetic predispositions as part of the broader autism picture,” McIntyre said. “Are these difficulties the result of child-rearing challenges, or are they negatively impacted because of shared genetic risks? Our sample was very clean, and that’s good for science but not necessarily as good for generalizing our findings, but I’m confident with the results we found in this particular sample.”

McIntyre, while a professor at Syracuse University, and her doctoral student Nicole Quintero studied families chosen in New York. They looked closely at sibling adjustments, involving social, behavioral and academic performance as recorded by both parents and teachers, and at the well- being of the mothers, whose average age was 36 and 94-95 percent of whom were married. The median age of older siblings was seven and most were first- or second-graders.

“Contrary to what has been found by many researchers, we found that older siblings were pretty well adjusted, with no significant differences in parent-reported or teacher-reported social skills,” said McIntyre, who joined the UO’s department of special education and clinical sciences in 2009. “These are all typically developing kids.”

Teachers, however, reported slightly more behavioral problems for the siblings of children with autism than control siblings. “There was a trend toward significance,” she said.

The problems resembled hyperactivity but not at levels generally attributed to attention-deficit hyperactive disorder (ADHD). Teacher reports noted that these children exhibited slightly more fidgeting, movement and attention problems.

“Children with siblings with autism may be experiencing some sub-clinical symptoms of hyperactivity or attention problems,” noted McIntyre, an affiliate of the UO’s Center for Excellence and Developmental Disabilities, Education, Research and Service. “Parents didn’t report seeing such things at home. Teachers see these children in a more structured environment. Siblings of children with autism may be at heightened risk for developing problems, potentially over time.”

Siblings of children with autism probably should be watched with appropriate academic supports in place, she said. “Our findings are rather positive overall, but these kids should be on our radar screens. These kids may start school OK, at least those from healthy families, but they may demonstrate difficulties over time. However, it has been shown that around 30 percent of siblings of autistic children have some associated difficulties in behavior, learning or development.”

The finding that moms with children with autism were more stressed and depressed in comparison to moms of typically developing preschool children “was not surprising at all,” McIntyre said. “That finding is robust in existing literature, so even though this sample involves highly organized, motivated and willing mothers, in comparison to other moms with two or more children, they are reporting more stress and more depression.”

Mothers of autistic children, she added, need assistance for day-to-day child-rearing activities to give them some time to be individuals. As part of her research and clinical work at UO’s nationally recognized Child and Family Center, she is looking at interventions that support parents and help kids with their daily living skills and behavior management.

Source: University of Oregon

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Don’t miss the next Sensory Friendly Film!

AMC Entertainment (AMC) & Autism Society of America bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis with the ”Sensory Friendly Films” program.

In order to provide a more accepting and comfortable setting for this unique audience, the movie auditoriums will have their lights brought up and the sound turned down, families will be able to bring in their own gluten-free, casein-free snacks, and no previews or advertisements will be shown before the movie. Additionally, audience members are welcome to get up and dance, walk, shout or sing – in other words, AMC’s “Silence is Golden^®” policy will not be enforced unless the safety of the audience is questioned.

Did you go to one of our previous Sensory Friendly Flims? Tell us what you thought!

Tickets are $4-6 depending on location and can be purchased on the day of the event.

Diary of a Wimpy Kid | March 20, 2010 | 10 a.m. local time

Follows the travails of wise-cracking middle school student Greg Heffley over the course of an academic year.

Arizona

AMC Mesa Grand 24
1645 S. Stapley Dr., Mesa, Ariz. 85204

AMC Deer Valley 30
3033 W. Agua Fria Fwy., Phoenix, Ariz. 85027

Foothills 15
7401 La Cholla Blvd. Ste. 144, Tucson, AZ 85741

California

AMC Covina 30
1414 N. Azusa Ave., Covina, Calif. 91722

AMC Cupertino Square 16
10123 N. Wolfe Rd., Cupertino, Calif. 95014

AMC Ontario Mills 30
4549 Mills Cir., Ontario, Calif. 91764

AMC Block 30
20 City Blvd. W., Ste. 1, Orange, Calif. 92868

AMC Mission Valley 20
640 Camino Del Rio North, San Diego, Calif. 92108

AMC Palm Promenade 24
770 Dennery Rd., San Diego, Calif. 92154

AMC Van Ness 14
1000 Van Ness Ave San Francisco, CA 94109

AMC Mercado 20
3111 Mission College Blvd., Santa Clara, Calif. 95054

AMC Del Amo 18
3525 Carson St., Torrance, Calif. 90503

AMC Promenade 16
21801 Oxnard St., Woodland Hills, Calif. 91367

Colorado

AMC Flatiron 14
61 W Flatiron Cir, Broomfield, CO 80021

AMC Highlands Ranch 24
103 W. Centennial Blvd., Highlands Ranch, Colo. 80129

AMC Westminster 24
10655 Westminster Blvd., Westminster, Colo. 80020

Connecticut

AMC Danbury 16
61 Eagle Road, Danbury, CT 06810

AMC Plainville 20
220 New Britain Ave., Plainville, CT 06062

*See also New York and New Jersey for other theatres in the New York City area

District of Columbia

AMC Georgetown 14
3111 K St. NW, Washington, DC 20007

*See also Vriginia and Maryland for other theatres in the Washington, D.C. area

Florida

AMC Altamonte 18
451 Altamonte Ave., Altamonte, FL 32701

AMC Aventura 24
19501 Biscayne Blvd., Ste. 3001, Aventura, Fla. 33180

AMC Coral Ridge 10
3401 NE 26th Ave, Fort Lauderdale, FL 33306

AMC Regency 24
9451 Regency Square Blvd Jacksonville, FL 32225

AMC Pleasure Island 24
1500 Buena Vista Dr, Lake Buena Vista, FL 32830

AMC Merchants Crossing 16
15201 N Cleveland Ave Suite 800, North Fort Meyers, FL 33917

AMC Woodlands Square 20
3128 Tampa Rd., Oldsmar, FL 34677

AMC Sunset 24
5701 Sunset Dr., Ste. 300, South Miami, Fla. 33143

AMC Veterans Expressway 24
9302 Anderson Rd., Tampa, FL 33634

AMC Indian River 24
6200 20Th St Rm 600, Vero Beach, FL 32966

Georgia

AMC Phipps Plaza 14
3500 Peachtree Rd. NE, Atlanta, Ga. 30326

AMC Barrett Commons 24
2600 Cobb Place Lane Northwest, Kennesaw, GA 30144-6872

AMC Discover Mills 18
5900 Sugarloaf Pkwy., Ste. 415, Lawrenceville, Ga. 30043

AMC Southlake 24
7065 Mount Zion Cir., Morrow, Ga. 30260

Illinois

AMC Northbrook 14
1525 Lake Cook Rd, Northbrook, IL 60062

AMC Barrington 30
175 Studio Dr, South Barrington, IL 60010

AMC Cantera 30
28250 Diehl Rd., Warrenville, IL 60555

Indiana

AMC Greenwood 14
461 S. Greenwood Park Dr., Greenwood, Ind. 46142

AMC Castleton Square 14
6020 E. 82nd St., Indianapolis, Ind. 46250

Kansas

AMC Studio 30
12075 S. Strangline Rd., Olathe, Kan. 66062

*See also Missouri for other theatres in the Kansas City area

Kentucky

AMC Newport on the Levee 20
One Levee Way Ste 4100, Newport, KY 41071

Louisiana

AMC Elmwood Palace 20
1299 Elmwood Park Blvd., Harahan, LA 70123

AMC Houma Palace 10
5737 W Park Ave, Houma, LA 70364

Maryland

AMC White Marsh 16
8141 Honeygo Blvd., Baltimore, Md. 21236

AMC Columbia Mall 14
10300 Little Patuxent Pkwy., Columbia, Md. 21044

AMC Rio Cinemas 18
9811 Washingtonian Blvd., Gaithersburg, Md. 20878

AMC MJ Capital Center 12
800 Shoppers Way, Largo, MD 20774

*See also Virginia and District of Columbia for other theatres in the Washington, D.C. area

Massachusetts

AMC Framingham 15
22 Flutie Pass, Framingham, MA 17014

Michigan

AMC Gratiot 21
35705 South Gratiot Ave, Clinton Twp, MI 48035

AMC Grand Rapids 18
3000 Alpine Avenue Grand Rapids, MI 49544

AMC Livonia 20
19500 Haggerty Rd, Livonia, MI 48152

AMC Forum 30
44681 Mound Rd, Sterling Heights, MI 48314

Minnesota

AMC Eden Prairie 24
8251 Flying Cloud Drive, Eden Prairie, MN 55344

AMC Rosedale 14
850 Rosedale Center, Roseville, MN 55113

Missouri

AMC West Olive 16
12657 Olive St, Creve Coeur, MO 63141

AMC Barrywoods 24
8101 Roanridge Rd., Kansas City, Mo. 64151

AMC Independence 20
19200 E. 39th St. S., Independence, Mo. 64057

*See also Kansas for other theatres in the Kansas City area

Nebraska

AMC Oakview 24
3555 S. 140th Plaza, Omaha, Neb. 68144

New Jersey

AMC Cherry Hill 24
2121 Route 38, Cherry Hill, NJ 08002

AMC Jersey Gardens 20
651 Kapowski Road, Elizabeth, NJ 07201

AMC Hamilton 24
325 Sloan Avenue, Hamilton, NJ 08619

AMC Wayne 14
67 Willowbrook Blvd, Wayne, NJ 07470

AMC Essex Green 9
495 Prospect Ave, West Orange, NJ 07052

*See also New York and Connecticut for other theatres in the New York City area; see also Pennsylvania for other theatres in the Philadelphia area

New York

AMC Maple Ridge 8
4276 Maple Rd Amherst, NY 14226

AMC Bay Plaza 13
2210 Bartow Ave., Bronx, N.Y. 10475

AMC 84th Street 6
2310 Broadway, New York, NY 10024

AMC Vestal Towne Square 9
2425 Vestal Parkway, Vestal, NY 13850

AMC Webster 12
2190 Empire, Webster, NY 14580

AMC Palisades Center 21
4403 Palisades Center Drive, West Nyack, NY 10994

*See also New Jersey and Connecticut for other theatres in the New York City area

North Carolina

AMC Concord Mills 24
8421 Concord Mills Blvd, Concord, NC 28027

Oklahoma

AMC Crossroads 16
1211 E I-240 Service Road, Oklahoma City, OK 73149

AMC Quaill Springs 24
2501 W Memorial Rd -Ste E, Oklahoma City, OK 73134

Ohio

AMC Ridge Park Square 8
4788 Ridge Rd., Brooklyn, Ohio 44144

AMC Lennox 24
777 Kinnear Rd, Columbus, OH 43212

*See also Kentucky for other theatres in the Cincinnati area

Pennsylvania

AMC Neshaminy 24
3900 Rockhill, Neshaminy Mall 660, Bensalem, PA 19020

AMC Waterfront 22
300 W. Waterfront Dr., West Homestead, Pa. 15120

AMC Painter’s Crossing 9
112 Wilmington Pike, West Chester, PA 19382

*See also New Jersey for other theatres in the Philadelphia area

South Carolina

AMC Dutch Square 14
421 Bush River Rd., Unit 80, Columbia, SC. 29210

Texas

AMC Parks at Arlington 18
3861 S Cooper St, Arlington, TX 76015

AMC Barton Creek 14
2901 Capital of Texas Highway, Austin, Texas 78746

AMC Stonebriar 24
2601 Preston Rd., Ste. 300, Frisco, Texas 75034

AMC Firewheel 18
100 Coneflower Dr., Garland, Texas 75040

AMC Willowbrook 24
17145 Tomball Pkwy Houston, TX 77064

AMC First Colony 24
3301 Town Centre Blvd. South, Sugar Land, TX 77479

Utah

AMC Loews Layton Hills 9
728 West 1425 North, Layton, UT 84041

Virginia

AMC Hampton 24
1 Town Center Way, Hampton, Va. 23666

AMC Tysons Corner 16
7850 Tysons Corner Center, Mclean, Va. 22102

AMC Lynnhaven 18
1001 Lynnhaven Mall Loop, Virginia Beach, Va. 23452

AMC Potomac Mills 18
2700 Potomac Mills Cir., 886-F3, Woodbridge, Va. 22192

*See also Maryland and District of Columbia for other theatres in the Washington, D.C. area

Washington

AMC Kent Station 14
426 Ramsay Way, Kent, Wash. 98032

AMC River Park Square 20
808 W Main Ave Spokane, WA 99201

AMC Woodinville 12
17640 Garden Way NE, Woodinville, WA 98072

Wisconsin

AMC Mayfair 18
2500 N Mayfair Rd., Ste. M186 Wauwatosa, WI 53226

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The Autism News | English

Ferd Marquez put a brace on his son Gavin, 4, at their home in 4S Ranch, as 14-month-old sister Audrey Bella watches. Gavin has been diagnosed with Tay-Sachs disease. (Eduardo Contreras / UNION-TRIBUNE)

Boy, 4, has Tay-Sachs, a rare genetic disease

By Celia Taghdiri | Sign On San Diego | News

Jan and Ferd Marquez of 4S Ranch were the typical elated parents who were overjoyed at the birth of their son. After all, Gavin was a perfectly happy and healthy boy for the first six months of his life.

But as time passed, he missed the developmental milestones. He began walking at 16 months but was floppy with little muscle tone. He also had a small appetite and was usually quiet.

“Everyone just kept telling us that all kids develop differently, and that boys usually are delayed, especially with speech,” Jan said. “But we knew something was wrong.”

After several medical evaluations, Jan and Ferd were given possible diagnoses — autism, ataxia, cerebral palsy and mental retardation. Physicians were unable to make an exact diagnosis and reiterated that Gavin, now 4, “is a very delayed child.”

Finally, a specialist informed the couple last March of the finding: Tay-Sachs disease.

Statistically, most individuals affected by the disease are of Jewish, French Canadian or Cajun descent. The Marquezes are Filipino. Kim Kubilus, director of family services for the Boston-based National Tay-Sachs and Allied Diseases Association Inc., said Gavin is the only known Filipino in the United States ever diagnosed with Tay-Sachs and is one of four known children with the juvenile form of the disease in California.

According to the National Tay-Sachs and Allied Diseases Association Inc., Tay-Sachs is a rare hereditary disease caused by a gene mutation that leaves the body unable to produce an enzyme called Hexosaminidase A (Hex-A). Without the enzyme, a fatty substance accumulates abnormally in cells, especially those in brain nerves, progressively damaging them. The disease is incurable. It slowly leads to blindness, deafness, retardation, paralysis and death. Children with the disease usually die by age 5.

The couple’s 14-month-old daughter does not have the disease, but she does carry the Tay-Sachs gene.

Gavin’s mental development is equivalent to a 3- to 6-month-old. He cannot walk unassisted because of weak muscles in his legs and arms. He wears diapers and is fed through a tube because he can no longer swallow. He attends special-education school and is taken by bus to day care. At home, he has a special seat and a bath chair. Although Gavin undergoes physical therapy once a week, his parents are his arms and legs.

“When I got the call from the neurologist on March 2, 2009, the first thing he said was ‘unfortunately,’ and from just hearing that first word, I had to pause because I could not breathe for a moment,” Jan said. It was so unbearable. It was as if you wanted to be a robot so you would feel no pain whatsoever.”

Said Ferd: “There is always hope for everyone, but the biggest hope we believe is God. God will cure Gavin. Scientifically, we are confident that Gavin’s condition can be cured through gene therapy, but currently, human clinical trials will not be available until 2012 unless more allocated money, resources and political pressure can be achieved to speed up the process.”

In September, The National Institutes of Health awarded a $3.5 million grant to the Tay-Sachs Gene Therapy Consortium to continue research into the genetic disorder. The award was eagerly awaited by Tay-Sachs families and their supporters, who raised nearly $600,000 to assemble the international consortium of experts and help maintain its research agenda while scientists worked to secure federal funding.

The NIH grant will help advance an experimental gene therapy for Tay-Sachs and Sandhoff diseases from animal tests to human clinical trials. Several drugs are now being investigated, such as Ataluren PTC124. Drug companies are not permitting “compassionate use” for children with rare genetic diseases.

“It’s very sad and difficult since we are desperate, but the pharmaceutical companies need to limit their resources to see if the drugs are effective on the common diseases, such as cystic fibrosis and Alzheimer’s,” Ferd said.

“Tay-Sachs can happen to any couple, even to those who are not part of the high-risk groups for the disease,” said Kubilus, the Tay-Sachs association director. “We advise couples to seek genetic counseling, prior to conception, to fully educate themselves and make educated choices.”

Audrey Bella, who is a carrier but does not have Tay-Sachs, shared a moment with her brother. Gavin has limited mobility and must be fed through a tube.  (Photo by Eduardo Contreras – UNION-TRIBUNE)

Source: http://www.signonsandiego.com/news/2010/mar/06/faith-helps-family-cope-with-devastating-diagnosis/

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The Autism News English ataxia, Audrey Bella, autism, autistic, cerebral palsy, devastating diagnosis, faith, Ferd Marquez, Gavin Marquez, hope, mental retardation

The Autism News | English

Special Olympics, special athletes

By Angelo Cantera | Manila Times

Wth a metal ball in hand, Michael Mora surveyed an empty field. He lifted a free arm as if to brace for impact and placed the weighty sphere against his neck. After a bleak moment of focus and a quick intake of air, he twisted his body and sent the weight flying across the field of wilted grass. For a while, the heavy ball became nothing more than a mere dot hurled beneath clear skies. And Mora, beaming triumphantly after the successful throw, seemed to be just an ordinary shot-putter having a good day. However, much as his smile enshrouds the truth, he is not a typical sportsman. While speaking, there are times when he would garble words as if he is not confident enough to say what he wants. He is also quite forgetful, timid and noticeably sluggish when responding to questions. Like a number of his contemporaries, he is, in many ways, special.

However, according to Alex Babst, the national program director of Special Olympics Philippines, Mora is not entirely distinctive because of his apparent disabilities. What makes him exceptional is an honor that most people thrive to achieve.

“He is a brave winner,” Babst told The Manila Times. “He is afflicted with intellectual disabilities but even I can’t remember how many medals he has won both here and abroad. Not many people can brag about that.”

Mora has been interested in sports ever since he was young. Competing in soccer, basketball and several races, he has shown tremendous promise as an athlete. But after a tragic accident afflicted his memory and comprehension skills, his future seemed to have been jeopardized. Fortunately for him, that was not the case.

At the age of 13, Mora joined Special Olympics Philippines—an organization that provides year-round training in Olympic-type sports for people with intellectual disabilities. With the help of this organization and his family, he was able to compete in numerous sporting events locally and internationally with other intellectually disabled people. And after winning several awards in basketball, soccer and athletics, he has regained his confidence and has achieved heights that greatly dwarf the distance by which he can aptly toss a heavy shot put ball.

“He has competed in different sports and has shown that he can be capable despite his handicap,” Babst said. “For that, he is an inspiration. And there are a lot of people like him who have joined Special Olympics Philippines.”

For the right to be special

According to its President Theresa Macapagal, Special Olympics Philippines started back in 1978. It was initiated as part of an international organization when the Kennedy family wanted a worldwide thrust to help people with intellectual disabilities. With coaches that vary from professionals to eager advocates, they maintain a training style that appeals to the needs of their special athletes.

“After the observation period that determines the sports they may excel in, our coaches go on a one on one training with them to further the interaction because once the athlete gains confidence in his or her coach and vice versa, then they become friends,” Babst explained. “That is something important because most of our athletes are shy and neglected sometimes by their own families. They have very few friends because they’re mostly none-verbal. These are the things we want to encourage because it helps in the overall development process.”

To expand the opportunities given to the athletes, the organization has also made use of the “divisioning” process—a system wherein that allows intellectually challenged people to compete according to their ability—regardless of gender, age and disability.

“In other words, an autistic man who is, let’s say, 30 years old, can be compete with a 15-year-old girl who has down syndrome in a 50-meter race because both of them are capable of doing so,” Babst explained. “This allows more opportunities for athletes to be given a chance to compete.”

Now existent for more than three decades, it continues to train over 10,000 athletes in sports like basketball, bocce, bowling, badminton, aquatics, athletics, football, rhythmic gymnastics, powerlifting and table tennis.

“Our mission really is not to win medals,” Babst added. “It is to develop the ability and give opportunity for the intellectually challenged to demonstrate courage and experience joy.”

A father’s pride

While Special Olympics Philippines is centered on aiding the intellectually disabled, its advocacy cannot help but provide support for their families as well. Fostering a community that allows the kin of special athletes to see how gifted their loved ones really are, it has inevitably become a crutch that begets acceptance and pride.

“One thing we’ve noticed is when families get to know about Special Olympics and they include one of their own, it’s hard for them to leave because the child develops friends within the event,” Babst related.
“Secondly, the parents start to develop a bonding with other parents who share their plight. They no longer feel so alone or depressed because of their child’s situation. But when they compete in sports and win medals, all of a sudden, their attitude changes. Then they start accepting the child or the athlete for what he or she is.”

Babst himself is no stranger to this scenario. As he was interviewed by The Times, a 36-year-old woman sat before him with a perpetual look of curiosity on her face. And whenever she was addressed with a question, she would respond in a mild child-like manner.

Like Mora, she too was a special athlete decorated with medals for swimming and bowling. She was also one of the brave men and women who, despite adversity, refused to be tied down by misconceptions that people like her would be hard pressed to achieve anything.

Her name is Stephanie and despite her disabilities, Babst treats her with much love and respect—like every father should.

“I was one of those people who were in between point A to acceptance,” Babst said. “I still doubted her and I was negative about her situation. But after she won her first medal in swimming, I had a complete turn around. It was an experience that topped events in my life like my own graduation or having my first job. ”

He maintains, however, that it is a two-way process. In order for the benefits of their programs to take full effect on the families, they too must be willing to give their full support since it is needed in order for the athletes to do well.

“I usually tell parents this: ‘Nobody else is going to care for your disabled child as much as you would. Once you accept the disability, we can now start working on the ability,” he told The Times. “It is very necessary for the family to be involved because without them, the athlete loses interest. Sometimes nobody brings him or her to the venue. Another factor is, if an athlete feels that his or her family does not support him, then why should he or she go through all this? If a parent does not accept disability of the athlete, he or she will not accept that his or her child is capable of achieving success.”

He also added that with the full cooperation of the families and the coaches, it is not a question of whether or not an athlete will excel; it is merely a question of when he or she would do so. And should it come, the results are inspirational.

“Our male athlete can score up to 190 in bowling. I can’t even achieve 110,” Babst said laughing. “My daughter can typically score up to 145. And just to exemplify how good the other athletes are, I can say this: in Shanghai, we sent 51 athletes. We came home with 52 medals. 9 of which were gold. That was back in 2007. That is already a benchmark. With that, you can really assume that each of our athletes is doing their best.”

Be a fan

Despite their success however, with athletes like Mora and the younger Babst achieving numerous accolades for their abilities, Special Olympics Philippines still treads an arduous path. Budget constraints are sometimes a problem because of its reliance on grants and donations. Misconceptions like being intellectually challenged is the same as being physically challenged remain afoot despite the improvements shown by the Philippine government. More importantly, discrimination also appears unvanquished in this modern age. More often than not, the challenges faced by this organization do not necessarily come from the intellectually disabled but from people who claim them selves to be “normal.”

“The main problem still is the ignorance of society,” said the older Babst. “Even with families, they think, just because a child has Down syndrome or autism, he or she is already hopeless. But it has been shown throughout the world that given the opportunity, a person with intellectual disability can still succeed.”

To further push their advocacy, Special Olympics Philippines, in cooperation with its international mother organization, recently launched a world wide campaign entitled “Be a Fan”—a movement that aims to change negative perceptions or attitudes concerning intellectually disabled individuals. Through the sharing of resources and information both medical and sociological, and through awareness-raising partnerships with media, government, academe and social institutions, it invites the public to get involved in ongoing efforts to improve the quality of life of all special people.

“Be a fan of human dignity and acceptance,” said Macapagal, the incumbent president of the Special Olympics Philippines board. “Be a part of the movement by advocating the message of hope to institutions, actively campaigning to stop using the word ‘retard,’ joining thousands of families who uphold the rights of special people.”

According to the older Babst and Macapagal, special athletes can be helped to reach their maximum potential as human beings if people make the conscious choice to integrate them into society.

This is a truth that can be seen in athletes like Mora. Standing at the middle of an open field, practicing his shot put technique for the coming games, he inadvertently depicted a symbolic image of reality. He surveyed the field. He weighed his challenge. He posed as he was trained to do and he tossed the heavy sphere with all his might. And in that moment, like the heavy ball he capably hurled through a great distance, his handicap seemed nothing more than a blemish on his horizon—a nearly unnoticeable mark on the face of hope.

Source: http://www.manilatimes.net/index.php/sunday-times/12816-the-real-winners

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Parents often miss the symptoms of autism, which tend to emerge in children after six months of age. (Getty Images)

Many May Not Pick Up Subtle Clues of the Condition, New Study Says

By Chris Emery | ABC News

The symptoms of autism tend to emerge in children after six months of age, with a loss of social and communications skills that is more common and more subtle than previously thought, according to a new study that questions previous assumptions about the progression of the condition.

At six months, children with autism spectrum disorder demonstrated behavior similar to other children, gazing at faces, sharing smiles, and vocalizing with similar frequency, researchers reported online in the Journal of the American Academy of Child and Adolescent Psychiatry.

However, autistic children displayed fewer of these behaviors as as they got older, and from six months to 18 months the loss of social communication and skills typically became clear.

While doctors typically caught early signs of autism, the declines were more subtle than previously suggested and most parents — 83 percent — did not report regression in the social behaviors and skills.

“These findings lead us to two major conclusions,” Sally Ozonoff of University of California Davis Health System in Sacramento and colleagues wrote.

“First, the behavioral symptoms of autism spectrum disorder appear to emerge over time, beginning in the second half of the first year of life and continuing to develop for several years.

“Second, our most widely used and recommended practice for gathering information about symptom onset, parent-provided developmental history, does not provide a valid assessment of the slow decline in social communication that can be observed prospectively.”

Autism is thought to emerge in two ways: an early onset pattern and a regressive pattern.

A majority of autistic children are thought to experience the early onset pattern, showing clear signs of the disease in the second year of life but in some cases showing signs before the first birthday.

Those with the regressive pattern are thought to develop normally for the first year of life, then begin losing communications and social skills.

However, most previous studies have been retrospective in design, and some children don’t appear to fit either of the typical patterns, bringing into question the validity of this two-pronged model of onset.

More recently, a third category has been suggested, in which children develop normally and then seem to hit a developmental plateau, but not regress.

In an accompanying editorial, Tony Charman of the Institute of Education in London wrote that the design of the new study heralds a new wave of descriptive developmental studies of autism, or features of autism, in infants and toddlers.

“Previously, the only source of information we had about infancy and toddlerhood of children with autism was retrospective reports from parents at the age of diagnosis (often years after the onset),” he wrote.

“Parental report of early history and development still is an important component of the autism diagnostic evaluation. However, the retrospective parental informant biases, particularly through the lens of autism, might lead both to over- and underestimation of atypical features.”

Ozonoff and colleagues conducted a study that compared 25 high-risk infants later diagnosed with an autism spectrum disorder with 25 gender-matched, low-risk children later determined to have typical development.

The children were recruited for the study at University of California Davis and University of California Los Angeles. The high-risk children were identified based on having a sibling who had already developed autism.

The children were evaluated at 6, 12, 18, 24 and 36 months of age for frequencies of gaze to faces, social smiles, and directed vocalizations, which were were coded from video and rated by examiners.

“The results of the current prospective study suggest that the traditionally defined categories of early onset and regressive autism do not portray accurately how symptoms emerge, nor does the newer-onset category involving a developmental plateau,” the authors wrote.

They found that specific social communicative behaviors clearly decreased, rather than failing to progress, as previously thought, with losses especially dramatic between 6 and 18 months.

They concluded that this suggests onset of autism spectrum disorder, marked by loss of social communication behaviors, occurs much more often than has been recognized using parent report methods.

However, rather than the rapid and marked losses typically reported, they saw relatively subtle and gradual declines, which were often preceded by earlier parental concerns and often followed by failures to progress in other areas.

“We urge professionals to refer to intervention any infant or toddler who displays a sustained reduction in social responsivity over time,” they wrote.

“Given the gradual course of symptom emergence and the paucity of diagnostic tools for infants and toddlers with suspected autism, the diagnostic process can be quite protracted and intervention may be needlessly delayed.”

Source: http://abcnews.go.com/Health/Autism/autism-signs-symptoms-missed-parents/story?id=10013129

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A grey house mouse. Researchers have proven that mice produce ultrasonic vocalizations for courtship that are structured like songs. (iStockPhoto)

The ultrasonic songs vary widely, with some winning males emitting tunes that prove irresistible to females.

By Jennifer Viegas | Discovery News

Male mice drive females wild with ultrasonic love songs, suggests a new study.

Since song quality varies, the mice world has its Justin Timberlake-like stars that impress females with their talents more than other willing, but not so able, males do.

While no one is yet certain what makes a “hit love song” in the mice world, lead author Kerstin Musolf told Discovery News that “it could be a question of different syllable types or endurance in singing or a combination of both — all together it could help the female to choose the best mate.”

Musolf is a researcher in the Konrad Lorenz Institute for Ethology at the Austrian Academy of Sciences.

She and her team believe their study, which has been accepted for publication in the journal Animal Behavior, is the first to examine the ultrasonic vocalizations of wild-derived house mice. These calls have frequencies above those of sounds audible to humans and many other animals.

Using special equipment, the researchers recorded and observed offspring of house mice caught at three locations in Ganserndorf, Austria. When males got a whiff of scent from available, non-related, adult females, they sang their hearts out at varying degrees. Females were more attracted to songs crooned by unfamiliar males that weren’t related to them.

Women sometimes flirt by pushing back their hair. Female mice do something similar by cleaning themselves vigorously all over.

“Individuals self-groom more in the presence of an odor of a highly receptive potential mate than that of a less receptive mate,” explained Musolf. “Self-grooming may be associated with olfactory communication between groomers.”

Females produce ultrasonic vocalizations too, “but only in a female-female context.” These different calls help them to distinguish familiar individuals from strangers.

Both males and females produce audible squeaks too, but males only do this at the “beginning of courtship and, as far as I know, not with song-like features,” Musolf said.

Ultrasound is not only inaudible to many predators, but it is also less likely to cause vibrations, which mouse-hungry animals, like snakes, can detect. Minks and weasels, however, are able to hear in the ultrasonic range, suggesting they can eavesdrop on mice.

The scientists suspect that other rodents, such as rats, produce ultrasonic courtship calls too.

Studies on these calls may surprisingly shed light on autism, a developmental disability marked, in part, by communication disorders. Jacqueline Crawley of the National Institute of Health and Maria Luisa Scattoni of the Istituto Superiore di Sanita in Rome have already found that certain mice, like some humans, are better at communication than others.

“We hypothesize that ultrasonic vocalizations may be a measure of social communication in mice,” they wrote in a PLoS ONE study, adding that “delayed, reduced or unusual ultrasonic vocalizations in mice” could model the “impaired communication” seen in autism.

Crawley and Scattoni hope future studies on the vocalizations will enable identification of the genetic and environmental causes of autism, and allow scientists to evaluate proposed treatments for it.

Source: http://news.discovery.com/animals/mouse-courtship-songs-ultrasonic.html

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Chelation Therapy (eHow)

Dad challenges 2 physicians’ alternative therapy

By Patricia Callahan | Chicago Tribune

The father of a 7-year-old Chicago boy who was diagnosed as a toddler with autism has sued the Naperville and Florida doctors who treated his son, alleging they harmed the child with “dangerous and unnecessary experimental treatments.”

James Coman and his son were featured last year in “Dubious Medicine,” a Tribune series that examined risky, unproven treatments for autism based on questionable science.

The defendants — family-practice physicians Dr. Anjum Usman of Naperville and Dr. Daniel Rossignol of Melbourne, Fla. — are prominent in the Defeat Autism Now! movement, which promotes many of the alternative treatments the Tribune scrutinized. Both have spoken to groups of parents at autism conferences and trained other physicians in their methods.

Coman alleged in Cook County Circuit Court that Usman and Rossignol prescribed “medically unnecessary and unjustified” chelation treatments, designed to force the body to excrete toxic metals, even though the child did not suffer from heavy metal poisoning. The treatments carry a risk of kidney failure, the lawsuit alleges.

“This is a big business, and there are a lot of people who are willing to put aside the safety of children to make money off of scared, desperate parents,” Coman said in an interview.

Rossignol prescribed these treatments solely over the phone, having never seen the child in person, according to the lawsuit. A representative from Rossignol’s office said the doctor could not comment on pending litigation. Usman did not return calls seeking comment.

Coman also alleged that Doctor’s Data Inc., the St. Charles laboratory that performed the tests Usman and Rossignol used to justify these treatments, was negligent for using an “improper method” of testing.

The lawsuit spotlights a test often used to diagnose metal poisoning in children with autism. To conduct the test, doctors give children a chelation drug that forces the body to let go of some of the metals that exist in everyone — healthy or sick — in trace amounts. Those metals show up in urine, which is sent to a lab for screening.

In the case of Coman’s son, Doctor’s Data then compared those drug-provoked results to a reference range calculated for people who had never been given a chelation drug. Based on this apples-to-oranges comparison, Coman’s son was found to have elevated levels of lead, aluminum, tin and mercury — some with results Doctor’s Data listed in the “90 percent range of metal contamination,” according to the lawsuit.

The first of many of these tests that found metal poisoning was performed on Coman’s son when he was just 2 years old and “had not been exposed to mercury or any other heavy metal in significant quantity,” the suit alleged.

The chief executive of Doctor’s Data did not return calls seeking comment.

The treatments Coman’s son received are also the subject of a bitter divorce and custody battle between Coman and his wife. She has been a proponent of the therapies for the boy, according to divorce court records.

Source: http://www.chicagotribune.com/health/ct-met-autism-therapy-lawsuit-20100304,0,5271734.story

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