Autism Speaks 400
Autism Speaks continues its outstanding efforts to raise autism awareness and funds for autism research with its latest effort the Autism Speaks 400. This is another terrific way to tell the world about autism.
NASCAR NEXTEL Cup Series Race at Dover International Speedway to be named the “Autism Speaks 400 Presented by Visa”
DOVER, DE (May 18, 2007) — Dover International Speedway announced today that the June 3, 2007 NASCAR NEXTEL Cup Series race will be named the “Autism Speaks 400 presented by Visa.” Autism Speaks is an organization dedicated to increasing understanding and knowledge of autism spectrum disorders; to funding research into the causes, prevention, treatments and cure for autism; and to advocating for the needs of affected families.
“Thanks to Visa’s commitment, this event marks the first time a NASCAR NEXTEL Cup event entitlement has been dedicated to a not-for-profit organization,” said Mark Rossi, vice president of sales & marketing for Dover Motorsports, Inc. “Millions of fans watching the race on Fox around the country, along with our loyal fan base here at the track in Dover, will be exposed to the ‘Autism Speaks 400 presented by Visa’ messaging. The end result will be increased awareness, and additional funds, to assist the many important initiatives of Autism Speaks.”
From now until June 1, Dover International Speedway will donate $5 to Autism Speaks from each ticket purchased with a Visa card for the June 3 “Autism Speaks 400 presented by Visa” race. Fans can visit http://www.autismspeaks.org to learn more and donate to this worthwhile cause.
As part of the entitlement, a special one-of-a-kind experience will be auctioned, with all proceeds going directly to Autism Speaks. The prize includes the opportunity to wave the green flag as the honorary starter for the June 3 race; an autographed flag signed by the starting lineup of the NASCAR NEXTEL Cup Series race; the chance to be on stage for driver introductions; a ride in the pre-race parade lap for four guests; four tickets to watch the race from a skybox suite; four pit passes; and a guided tour for four of the NASCAR NEXTEL Cup garage. To participate in this unique auction and support Autism Speaks, go to
http://www.autismspeaks.org/dover400.
Autism Is A Global Health Crisis – Suzanne Wright
Founder of Autism Speaks, Suzanne Wright, along with Priscilla Natkins and Andy Shih
Gulf Times Newspaper
Suzanne Wright and Autism Speaks are raising autism awareness around the globe. The information presented in the following article is basic and to the point. Autism is not a literary metaphor or a different cultural viewpoint, it is a neurological disorder characterized by a range of very serious deficits. Children with autism can be aided immensely by behavioral interventions. But parents and professionals have to understand this point and act promptly and decisively. Autism awareness, not misleading rhetoric, is critical to helping autistic children whatever their country of residence.
Autism is a global health crisis: expert
Published: Wednesday, 25 April, 2007, 08:43 AM Doha Time
Staff Reporter
AUTISM strikes without any discrimination of ethnicity, class, geography, gender or race, said Autism Speaks’ founder, Suzanne Wright, yesterday during the Second Annual International Forum on Children with Special Needs in the Shafallah Center.
Also speaking on the occasion were Ad Council’s executive vice president and director of client services, Priscilla Natkins and Autism Speaks’s chief science officer, Andy Shih.
Referring to autism as ‘an urgent global health crisis,’ Wright said that this fast growing, serious developmental disorder, has become an epidemic which is found in one of every 166 children in the United States.
“Though the causes are unknown, it can spread worldwide without any discrimination,” she explained.
The session, on the urgency of bringing Autism epidemic awareness through public service advertising, began by screening a documentary entitiled, ‘Autism everyday’.
The daily lives of eight autistic children were screened, along with their parents’ apprehensions. The children, all above three to four years, required constant attention and were seen restless.
The main symptom was ‘stimming’, a repetitive body movement that self-stimulates one or more senses in a regulated manner, some of them, being grinding teeth, jumping on toes, head banging and scratching. The child makes absolutely no eye contact and many of them stopped speaking after a particular age. Simple tasks like dressing, brushing and eating by themselves took hours and a mother agreed to this, saying, “it took me two years to teach my son to put his shirt on”.
There have been instances when a child affected by autism had not slept for two to three weeks.
Researches say that 80% of the time, parents with an autistic child end in a divorce, as they are equally helpless and cannot cope with the emotional, and financial issues.
Some of the measures taken for the care of children diagnosed with autism, are behaviour therapy, music therapy, physiotherapy and speech therapy, most of which are done at home.
The parents were apprehensive, as these treatments were expensive – as high as $100 per hour.
Suzanne Wright, who herself has an autistic grandson, Criston, said that grandparents also play an extraordinary role in the care of autistic children. She exhorted that they should provide support to their children to raise the diagnosed child.
Wright said that autism can be diagnosed when children do not exactly meet their milestones, or meet them at an unusually early time, such as sitting up before six months and walking before 10 months.
Wright said that raising awareness was the corner stone of her mission.
Priscilla Natkins spoke about the role of media and and the effective public service campaigns that were raised. Some of the advertisements screened urged the audience to know more about autism, through their website.
The campaigns launched have successfully increased parental knowledge. It was said that the earlier the awareness, the earlier intervention will help. The advertisement council relied on pro bono services from advertising agencies and the media.
The target audience was parents of newborn, and the secondary target being doctors and health care professionals.
Andy Shih, spoke about the research they in this field. He also talked about the importance of scientists all over the world linking and working together to find a cure for this neurological disorder.
Real Autism Awareness – Early Intervention is Vital
As my son ages, he is now 11, I continue to fight for improved health, education and residential care for him and autistic persons on all points of the spectrum. In doing so I have not lost sight of the critical importance of early intervention for improving the life prospects of autistic children. I am not, and never will be, one of those who believes that in order to accept, love and find joy in my son I must accept and find joy in his autism.
To parents of newly diagnosed autistic children I say over and over again – do NOT listen to the sometimes irrational voices that tell you to accept and embrace your child’s autism. Autism is by definition a disorder, a condition which brings with it many deficits in thought, communication, and behavior. True there are some savants and there are many high functioning autistic persons who have social deficits and some communication limitations. But there are also many lower functioning autistic persons for whom the reality IS life in residential or institutional care. It can be a life threatening and dangerous condition.
Love your child as he or she is, complete with his or her autism. But do not mistake your child for his or her autism. Fight to improve your child’s lot in life no matter how many hand wringing, joy of autism advocates tell you that you are suppressing and rejecting your child. They will not be there to help your child when he bites himself repeatedly, when she wanders out the front door only to be found hours later, or when you are sick, elderly, infirm or deceased. They are interested in their agenda not in your child.
The most important way to help improve your child’s abilities is to get as much behavioral intervention as intensively and as early as you can. ABA based intensive intervention meets the evidence based standards of federal, state, provincial, professional and academic autism organizations across Canada and the United States. To date it is the ONLY intervention that meets those high standards.
I am not alone in counseling new parents to seek as much early intervention for their autistic child as possible. There are many others. The following letter from the Journal-Standard really struck me because it was from the mother and father of an 18 year old young autistic man who also urge parents to seek early intervention for their autistic children.
J-S LETTER: Early intervention vital in autism awareness
Published: Saturday, April 14, 2007 9:44 PM CDT
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April is Autism Awareness Month. As parents of an 18-year-old son with autism, we are pleased that unlike 15 years ago, when our son was first diagnosed, the term “autism” brings thoughts other than from the movie “Rainman.” But there’s still a long way to go! Today, one in 150 individuals is diagnosed with autism. That is more common than pediatric cancer, diabetes and AIDS, combined! This epidemic needs to be addressed by all areas of society. We have a whole generation of children that have become “lost in autism.”
The following is an excerpt from http://www.autismspeaks.org. Please familiarize yourself with autism and its characteristics:
“Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. It is part of a group of disorders known as Autism Spectrum Disorders (ASD). It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.
Autism Spectrum Disorders can usually be reliably diagnosed by age 3. Parents are usually the first to notice unusual behaviors in their child or their child’s failure to reach appropriate developmental milestones. Some parents describe a child that seemed different from birth, while others describe a child who was developing normally and then lost skills. Pediatricians may initially dismiss signs of autism, thinking a child will “catch up,” and may advise parents to “wait and see.” New research shows that when parents suspect something is wrong with their child, they are usually correct. If you have concerns about your child’s development, don’t wait: speak to your pediatrician about getting your child screened for autism.
If your child is diagnosed with autism, early intervention is critical to gain maximum benefit from existing therapies. Although parents may have concerns about labeling a toddler as “autistic,” the earlier the diagnosis is made, the earlier interventions can begin. Currently, there are no effective means to prevent autism, no fully effective treatments, and no cure. Research indicates, however, that early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with Autism Spectrum Disorders. As soon as autism is diagnosed, early intervention instruction should begin. Effective programs focus on developing communication, social, and cognitive skills.”
For further information about autism, please go to http://www.autismspeaks.org. Also, on their Website is a very informative 13-minute segment entitled, “Autism Every Day.” It gives an accurate portrayal of what life is like for an individual with autism, as well as how it affects the family.
Steve and Marie Bernhard
Freeport
http://www.journalstandard.com/articles/2007/04/15/opinion/opinion95.txt
Autism Vox Falsus
There is in the world autism community, at least on the internet component of that community, a group which portrays itself as the true voice of autism. It is essentially an internet based community comprised of some high functioning autistic persons, some parents of autistic children, and some “professionals” including some psychiatrists and educators who oppose attempts to treat or cure autism. Self described as the Neurodiversity movement this group poses as human rights advocates for the autistic but often resembles a hate group in its personal attacks and demonization of any parent or group which attempts to find and fund treatments and cures for autism. Any mention of the serious challenges of the more severe forms of autism is attacked by the high fucntioning autism internet essayists. Even mentioning that some autistic suffer from cognitive deficits, even the use of the expression “low functioning autism” is met by hostility from the Neurodiversity advocates. Far from being the true voice of autism, Neurodiversity is a false voice; an autism vox falsus.
Parents across Canada and the United States and elsewhere in the world have fought hard to seek and obtain a better life for their autistic children through treatment and education. For their efforts they are mocked, ridiculed and demonized by the Neurodiversity movement . The core of the Neurodiversity movement is a number of high functioning autistic persons who do not wish to be cured of their autism. They view their autism as an essential component of who they are as individuals. That is a view point that I can and do respect. They have the right to wish to remain autistic. Where Neurodiversity becomes troublesome is when they fight to prevent parents from seeking cures and treatments for their own children and the demeaning tactics they use in doing so.
One of the Neurodiversity internet commentators who is generally more polite than most is Ms. Kristina Chew the mother of a 10 year old autistic boy, who holds a Ph.D and is a classics teacher. Although Ms Chew has in fact employed ABA interventions to assist her son she downplays that fact on her blog site “Autism Vox” where her guest commentators usually present a Neurodiversity anti-autism cure perspective. But, she is admittedly almost always exceptionally polite and diplomatic. That diplomatic bent changed dramatically this past week though with two comments from Ms. Chew about the Don Imus racism controversy. In these comments Ms. Chew made clear her animosity towards Autism Speaks and towards the parents in the Autism Every Day video.
“I really don’t have anything to say about Don Imus — I am no fan, to be sure — but living here in New Jersey, and my husband being a Rutgers alum — I have been appalled, or just outraged, at his use of “crude, offensive language” about the Rutgers women’s baskbetball (sic) team last Wednesday while discussing their defeat in the NCAA Women’s Basketball Championship.
I do not know understand how any national autism organization can be associated with someone who can use such hateful words.“
http://www.autismvox.com/one-thing-don-imus-shouldnt-have-said/
“It should be noted that, just under a year ago, Imus’ MSNBC show broadcast A New Decade for Autism, a fundraising event at which the video Autism Every Day was first screened—a video which depicts life with autism as difficult (as it can be, but there are ways to change this, for sure) and hopeless; a video that was felt by more than a few autistic persons and parents of autistic children as portraying autism as horrrible and hateful only: No surprise, perhaps, that it had the endorsement of Imus.”
http://www.autismvox.com/in-the-wake-of-imus-ouster/
The heinous crimes committed by Autism Speaks? Raising money for research and treatment of autistic children. The Autism Every Day video consisted of parents telling of the challenges presented by their childrens’ autism. For that these parents, along with MSNBC and Autism Speaks , have been vilified by the Neurodiversity movement. Until this week Ms Chew and Autism Vox had been polite and diplomatic in expressing her Neurodiversity anti-autism cure sentiments. The language above though removes the pretence of civility from Autism Vox.
The use by Ms Chew of Mr Imus’ offensive personal comments to smear an organization and group of parents fighting to improve the lives of their autistic children is itself offensive.
Autism Vox? Autism Vox Falsus is more like it.
Ultimate Autism Reality Check – Autistic Children Become Adults
Centracare
414 Bay Street,
Saint John, NB
Much of the autism discussion found on the internet does not seem directed at the very real concerns of families raising autistic children. Little of it provides practical assistance for the very real challenges facing families with an autistic child to raise and care for. The same is also true for the mainstream media. Despite all the attention generated by Autism Awareness Month in the US and the good efforts by the people at Autism Speaks, Oprah Winfrey and the View, there is very little coverage of, discussion of, or even acknowledgment of the realities of life that await autistic children, particularly those with severe intellectual, communication and behavioral deficits when they grow older, when they become youths and adults.
In New Brunswick Canada our residential care and treatment capacity is extremely limited. Information is not readily available to autism organizations about what facilities and services do exist. Requests for feedback sent to residential care home operators by the New Brunswick Autism Society went unanswered by the owners of those facilities. Government officials generally engage in the time honored tactics of delay and divide the autism community and lumber on with the same inadequate resources currently available.
In New Brunswick youths and adults who reside in residential care facilities will be cared for by staff with little or no training in autism or behavior management techniques. When frustrations and conflict arise from strained relations between untrained staff and persons with autism spectrum disorders there is no one to take the side, or offer the perspective of, the autistic youth or adult. Assault charges then follow against the autistic youth or adult who is supposedly being cared for in the residence.
In New Brunswick a year and a half ago an autistic youth was sent to reside on the grounds of the Miramichi Correctional facility. He had been convicted of no crime or offence. He was sent there because the Province of New Brunswick lacked the residential care or facilities in which he could live and receive treatment. Ultimately he was sent out of the province, out of the country, to a facility in the State of Maine.
New Brunswick has a central mental health facility in which persons with a variety of mental illnesses reside. The facility does have a psychologist on staff but the facts of life for an autistic person living in that facility are not pretty. I have visited that facility in the past with a father who told of arriving on short notice and finding his adult autistic son, barely clothed, in an isolation room with a hard wet floor. When we arrived we found exactly the same situation. There is little in the way of recreational programs or activities organized for severely autistic adults.
It might be different in other provinces and states in North America. Living in New Brunswick Canada this is the future that awaits severely autistic children as they age. As the father of an autistic son, now 11 years old, I can not ignore that future. It is the ultimate autism reality check.
Autism Speaks at Conor’s House
Autism Speaks has done a terrific job in raising Autism Awareness and in emphasizing the need to take action to cure autism, to provide effective autism interventions and to raise funds for research into autism causes and cures.
At Conor’s house we do not wring our hands and agonize over the right metaphors to use while talking about autism issues. Our priorities are found in improving Conor’s ability to participate in and enjoy life to the fullest extentpossible. We find joy in Conor not in his autism and we seek not to “accept autism” but to provide Conor with evidence based treatment and education to overcome to the fullest extenet possible the deficits that autism brings. To date only ABA meets the evidence based standard but other evidence based interventions may emerge with research. And Autism Speaks is a driving force today in raising awareness and funds for that research.
At Conor’s house Autism Speaks and we are listening.
Leadership Counts; Thank You Autism Speaks
Leadership counts.
Autism Speaks has filled a leadership vacuum with its effective leadership on behalf of autism. Autism awareness and funding for autism research will be raised by Autism Speaks walks across North America. The public communications power of entertainment and political stars such as Senator Hillary Rodham Clinton, Toni Braxton, Bill Cosby, Jerry Seinfeld, Paul Simon and many others, has been harnessed to raise awareness and funds for research. Legislative initiatives such as Senator Clinton’s recent Expanding the Promise initiative in the US Senate have been undertaken. The Autism Every Day video featured at the Sundance Film Festival has helped the world move past the Rain Man/Savant stereotypes and understand some of the harsher realities faced by many autistic persons and their families.
As the parent of a profoundly autistic 11 year old boy in New Brunswick Canada I have been involved in autism advocacy for 8 years. Lack of knowledge by important government decision makers and by members of the public has been a huge obstacle to overcome in trying to improve the life prospects of autistic persons in our neck of the woods. The incredible media power of Autism Speaks, the focus on doing something positive for persons with autism, has helped, and will continue to help all of us fighting for improved treatment, education and residential care for persons with autism – wherever we live.
Thank you Autism Speaks.
The Autism Knowledge Revolution
We are living in a revolutionary era. The hardware era is giving away to the software age, and as a result, the economic and social landscape of the world is undergoing seismic changes. The Knowledge Revolution, Noel M. Tichy, Ph.D., 2002
The world is awakening now to another knowledge based revolution – the revolutionary explosion in our knowledge of autism disorders. Like other revolutions the Autism Knowledge Revolution also promises to be seismic in its impact. Recent autism reports have brought news of the Autism Genome Project with studies providing new information about the genetic bases of autism disorders. Gene mutations are being identified as the cause of some instances of autism. A new study suggests that the amygdala, a part of the brain associated with emotional learning and fear, shrinks in people with autism, as a result of chronic stress caused by social fear in childhood.
Like other revolutions there are those who fear the onset of the Autism Knowledge Revolution and its impact. They stand on principle and cloak their fears in the mantle of human rights. Fear mongering is already spreading in relation to genetic research in autism with wild speculation about what the purveyors of such fear describe as a eugenics program similar to some of history’s worst atrocities. Others express a more practical fear; that our rapidly increasing knowledge in the genetics of autism will be of no value to older autistic children and adults. As the father of a severely autistic 11 year old boy I understand that particular fear but I do not believe that genetic research will yield only clues to prevention of autism occurrence or education of the very young. It is quite possible that our knowledge of autism disorders will assist in understanding how autism works in all individuals with an autism disorder and that may lead to new ways of understanding autistic persons and how to enhance their lives.
Hopefully one result of the Autism Knowledge Revolution will be the end of some of the needless hostility surrounding the vaccine/mercury autism debate. The believers in the Mercury Theory have clung to their theory with almost no scientific support and have resorted in desperation to belief in a world wide conspiracy involving “big pharma”, big government and a “bought and paid for” world science community doing the bidding of Big Pharma. Some opponents of the Mercury Theory have been just as virulent and would censor any reference to autism as a disorder, disease or medical condition by any term. More research, more knowledge, may well show some environmental factors in the onset of autism, mercury based or otherwise. Or it may disprove conclusively any such connections.
The future holds promise but never provides promises or guarantees. Some of the research currently under way may lead to dead ends; part of the scientific process of elimination. But the increase in knowledge of autism will undoubtedly increase our uderstanding of autism. Surely a good thing in and of itself.
The autism knowledge revolution does provide hope, hope of a cure for those who seek it for themselves or their loved ones. It is a hope based not on resignation or “acceptance of autism”. It is a hope based on solid scientific research as most of our advances of the last 300 years have been. There are no limits at this time on where this knowledge might lead. While concern that it will not assist older autistic persons is understandable it does not automatically follow that such research will be of no benefit to them and all autistic persons, regardless of age.
Those of us who are not ourselves scientists, and do not imagine ourselves to be scientists, can still assist by involvement in organizations, such as Autism Speaks, and CAIRN (Canadian Association Intervention Research Network), which have been such powerful positive forces in the advancement of autism research.
We can all lobby, create public awareness and raise funds.
We can all join the Autism Knowledge Revolution.
Autism Speaks Is At It Again
Autism Speaks is at it again. Autism Speaks has been talking the talk, raising awareness for autism, with a variety of projects, including the reality based video Autism Every Day, which examines some of the realities of severe autism, and raising funds for autism research. But Autism Speaks is also walking the walk to raise autism awareness and funds for autism research at walks across the US including March 31 walks in West Texas and Oklahoma City, April walks in LA, Broward County, Nebraska and Allentown and the annual Long Island Autism Walk in October, purportedly the largest autism walk in the world, with 20,000 participants in 2006, raising $2,000,000 for quality, peer-reviewed autism research. The complete schedule of Autism Speaks Walk Now for Autism walks can be found at:
http://www.walknowforautism.org/site/c.grKPI2PCImE/b.2485123/k.BD69/Home.htm
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