Autism Mom Jenny McCarthy On Chicago Sun-Times Ten Women Who Inspired in 07 List

In a move that will undoubtedly provoke angry outbursts from Autism Hub bloggers the Chicago Sun-Times has named Autism Mom and Celebrity Autism Activist Jenny McCarthy as one of the The ten women who inspired us in '07. Paige Wiser and Lisa Donovan of the Sun-Times noted that:

Jenny McCarthy

The zany blond struck a serious note this year, going public with her son's autism diagnosis. Her book Louder Than Words: A Mother's Journey in Healing Autism was honest, informative, down-to-earth and sometimes painful. McCarthy took a gamble, going public with her problems and shattering her fantasy image. Mothers everywhere thank her.

I do not subscribe to Ms McCarthy's views about autism causes and treatments but I try to keep an open mind and science is not, despite the views of neurodiversity bloggers to the contrary, a process by which possibilities are closed forever. New evidence, new studies may well support her anecdotal evidence about autism cause and treatment.

I do admire Ms McCarthy for speaking out about her son's condition and her efforts to help him. She must have known that as a beautiful actress she would be subjected to scorn and ridicule in some corners for presuming to enter the public debate on issues that affect her son so profoundly. But she did it anyway and encouraged many other parents in doing so. And she probably brought more attention to autism disorders and autism issues than the entirety of the Autism Hub's neurodiversity bloggers will ever do in their lifetimes.

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Autism Wishes 2008

My autism wish list for 2008:

1. That all persons with autism, their friends and family members will have the best possible year in 2008 with access to effective evidence based intervention, autism trained teacher aides and teachers and appropriate residential care and housing.

2. That a cure will be found for autism, a cure which is capable of reversing, even amongst older autistic children and adults, some of the most severe aspects of autism disorder, a serious neurological disorder.

3. That the stigmatization of intellectually impaired autistic persons by society at large, by prominent media organizations, by some very intelligent and higher functioning autistic persons, and by some 'autism hub' bloggers will cease.

4. That the few who disagree with my views on autism see the error of their ways. :-)

Happy New Year to All!

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Autism and Conor's Eyes Shut Visit With Grammy and Grampy

The last few days were spent on the road visiting my mother and father in Nova Scotia's Annapolis Valley.

In the past when we arrived at my parents' home Conor would run into the living room and check out the video cassettes that have been kept there for him over the years inspecting each one on the shelf on which they were stored. This year Conor would not open his eyes at all while inside the house itself. He did open them in the front entrance area before entering the kitchen and while outside the house. (It wasn't shyness around Grammy and Grampy; Grammy got a big smile and a flash of Conor's blue eyes - outside the house, and while in the entrance area, but not inside the house itself).

Conor, through the window, in the entrance area before
coming into the house itself at Grammy and Grampy's

Conor will sometimes react negatively when seeing people from his past, people he was really close to but whom he does not expect to see anymore. This appeared to be more of that tendency. Some object to the use of the puzzle piece as a symbol for autism. I think it is very appropriate and Conor's eyes shut visit with Grammy and Grampy is part of Conor's autism puzzle.

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Autism Predictions 2008

These are my autism predictions for 2008. Some are wildly speculative; some are ho hum continuations of existing trends. Like all attempts to "predict" the future they are inherently futile but I will make them anyway.

1. The Autism Knowledge Revolution will continue to expand and add to our real knowledge of autism disorders. 2007 saw a breathtaking explosion of research into the neurolgoical bases and structures of autism disorders. That trend will continue and the public will be informed less and less by prejudice and ideology and more and more by actual knowledge of what autism disorders are and how they can be treated. Research will also continue into possible environmental contributors to the rise of autism diagnoses.

2. In Canada the federal government of Prime Minister Stephen Harper will continue to ignore, thereby contributing to the worsening of , Canada's autism crisis just as it has helped sabotage international efforts to address the global warming crisis. (No this years return of a traditional Canadian winter does not offset the measurable reality that the polar ice caps are shrinking. In the North the warming is wrecking havoc on the Arctic environment and impairing the traditional Inuit way of life). Canada's National Autism Strategy will remain a joke as long as Stephen Harper remains as Prime Minister of Canada.

3. The stigma attached to intellectually impaired autistic persons will continue. Intellectually impaired autistic persons will remain invisible to the eyes of Dr. Sanjay Gupta, CNN and other major media organizations and stars who seek out autistic persons to portray for public consumption. And the Neurodiversity bloggers who like to portray historical geniuses such as Einstein as autistic will continue to deny the existence of the the many intellectually impaired autistic persons.

4. Ignorance about autism will continue. Autistic children in both Canada and the United States will still be sent home from public schools because "educators" are not educated about the realities of autism disorders. And some autistic youths will continue to be charged as criminals for behavior resulting from their autism disorders.

5. Autism reality will assert itself daily as lower functioning persons with autism move from the care of their families to residential and institutional settings where they will begin their lives in the care of strangers.

6. Some autistic persons such as Dr. Temple Grandin will continue to shine as role models for persons with Aspergers and High Functioning Autism.

7. Parents will continue to fight for their children with Autism Disorders. They will continue to educate, treat and care for their autistic children while hoping that the Autism Knowledge Revolution soon finds a cure for their children's Disorders. They will do so because they love their children - not their children's neurological disorders.

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Offensive Language On Autism Street

The uproar over the NYU Ransom Notes campaign has given way to smug victory happy dances by many in the neurodiversity community. But few of that crowd are taking the time to examine their own offensive language particularly when exercising their obsessions with celebrities who do not share their views such as Jenny McCarthy and now ..... Donald Trump. In Where Is Trump’s Science Team? at the Autism Street blog site where he mocks Ms McCarthy and Mr Trump as "celebrity idiots":

I was really beginning to think that Jenny McCarthy would be an extremely popular candidate for being considered the “celebrity idiot of the year” by many scientific thinkers in the autism blogging community. I suppose I should have known better about claims to the singular, where the plural is not only possible, but likely.

Jenny apparently has company.

I know that I used the word "idiot" in the past. In the 12 years since my intellectually challenged son with Autism Disorder came into my life though I have refrained from using the term.

Apparently Do'C at Autism Street isn't familiar with the old expression "Idiot Savant" which has now largely been replaced with the expression "Autistic Savant". Perhaps there is no room on Autism Street for the many intellectually impaired persons with Autism Disorder.

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Autism Reality On The Road

Autism is not a culture or a way of life.

Those who believe that autism is a Joy to be celebrated are guilty of seriously muddled thinking. Stressing the positive in any situation is admirable. Denying reality is harmful and can even be dangerous. Autism is a serious neurological disorder which restricts the lives of many who engage in serious self injurious behavior. It can also result in injury to family members, care givers, teacher aides and strangers.

I have written previously of the time that my son Conor, who has Autism Disorder with profound developmental delays, left the house while I was engaged in a business call, crossing a busy nearby street unaware of the dangers of automobile traffic. His life was probably saved by the actions of the Good Samaritan who got out of his vehicle and took him to safety in a nearby convenience store where I was directed to pick him up after calling 911. I owe too much to that Good Samaritan to be able to describe adequately in words.

Driving with a person with Autism Disorder can also present serious danger .... to the entire family. On several occasions Conor has slapped or grabbed my arm while driving. He has also hit and scratched me on the head, neck and shoulders while driving, including yesterday, driving home from the local Chapters outlet.

These honest descriptions of some of the real challenges of Autism Disorder on the road are not meant to demonize my son or other persons with Autism Disorder as some internet commentators routinely allege of anyone trying to deal with some of the harsher realities of autism. I find great joy and comfort in my son every single day. I enjoy his company. Conor is a lot of fun and he can lift my spirits so easily with a face pressed against a window waiting for Dad as I pull in the driveway at the end of a rough day at work. But I do him no service by denying the realities, the negative realities, presented by his Autism Disorder.

Autism Disorder presents many challenges on the road. And life's road is long. If a cure is found for Autism Disorder I would jump at the chance to have my son receive the benefit of that cure. I would seek a cure to help Conor on life's long road, much of which he will travel without me, alone, in the care, and company, of strangers.

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Joy of Conor Christmas

Conor had a lot of fun this Christmas, not because of his autism, not despite his autism, he just had fun, just like any other kid at Christmas.





Conor enjoyed the snow and was pleased to get some Christmas fun gifts.





What's the point of stickers if you can't wear them on your hands?






Woooops! That snow bank is a little deeper than I thought!






Oh Canada! I Stand on Guard for Thee!







Hey, I AM CANADIAN. A little bit of snow doesn't bother me!





Back to work, well fun sort of work anyway!

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Offensive Autism Language - "Autie" and "Curebie"

In the new post Ransom Notes world of autism discussions it seems that freedom of speech, and truth telling, must give way to the sensitivities of various persons and organizations. That being the dynamic of this new autism world order then I would like to offer my list of terms that I find offensive. I ask that the sensitive souls who petitioned NYU into submission over the Ransom Notes campaign, and others, cease and desist their use of these offensive and demeaning terms. I will start my list with two that I find particularly offensive: "autie" and "curebie".

1. Autie - is an expression used by some persons with Aspergers, and some parents and professionals who have surrendered to the ideology of the anti-cure movement, to describe persons with autism. I have a son who is diagnosed with Autism Disorder with profound developmental delays. The use of the term trivializes the very serious challenges he faces now and for the rest of his life. It is demeaning and stereotypical. Autism Disorder is a serious neurological disorder and can involve serious and dangerous intellectual, communication and behavior deficits. Please do not use the term "autie" to describe my son or other persons with Autism Disorder.

2. Curebie - is a derogatory term which is intended to be derogatory. It is a term coined by some anti-cure high functioning persons with Aspergers, and those who support their ideology, and it is primarily directed at parents trying to help their children; parents trying to treat and cure their autistic children. It is also directed at organizations promoting research aimed at curing autism. Please cease and desist the use of this hateful, offensive term.

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Autism, the Rotenberg Center and Rational Criticism

Much of the criticism of the Judge Rotenberg Educational Center use of aversives to help prevent serious self injurious behavior by persons with autism and other disorders amounts to little more than pompous, holier than thou, name calling by individuals or groups who offer no real alternative to the use of mild aversive therapy in such dangerous situations. Instead they simply proclaim that the JREC is evil, their methods are evil, and that therefore the JREC must be stopped. They offer no real solution to help prevent the dangerous and deadly behavior by persons whose parents seek the help of the JREC.

An editorial from the Boston Globe on Boston.com offers a much more balanced and reasonable criticism. It acknowledges the testimony of concerned parents who support the JREC, and the need for aversive therapy in some serious instances such as eye gouging, head banging and self mutilation but it critiques the error prone history of the JREC and stresses the need for more oversight of staff. From the Boston Globe we have received some calm, cool headed reflection. A rarity in discussion of autism issues and treatments.


"Israel says the center has implemented a slew of new supervisory and monitoring practices for its 38 group homes. But the overnight shift still lacks direct supervision by a registered nurse or other licensed medical professional. That doesn't inspire confidence.

The decision to apply aversive techniques rests in the hands of parents and a probate court judge who vets each case with medical experts. The question isn't so much whether skin shocks are an acceptable form of treatment, but whether the Rotenberg Center is the right place to do it.

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Autism and Rotenberg's Unanswered Questions

In Parents Defend School’s Use of Shock Therapy the New York Times has revisited the Judge Rotenberg Education Center's use of aversive therapies, particularly the "shock" therapy, a mild two second bee sting style of shock, used in treating children with severe aggressive, self injurious even self mutilating behavior arising from autism and other disorders. Many scientists, therapists, politicians, bureaucrats and internet bloggers have condemned the Rotenberg center's use of aversives. But The New York Times goes beyond the Mother Jones breathless expose approach to these issues and presents the perspective of Susan Handon and other parents whose children have benefited from aversive therapy and who have even obtained a court order so they could continue to send their children to the Rotenberg Center for treatment.

Why are parents fighting to keep their children in a center which subjects them to a form of shock treatment? The NYT describes some of the reasons children are being treated at the JREC:

"Rotenberg is full of children who will run up and hit strangers in the face, or worse. Many have severe types of dysfunction, including self-mutilation, head banging, eye gouging and biting, that can result from autism or mental retardation. Parents tend to be referred there by desperate education officials, after other institutions have decided they cannot keep the child."

The Rotenberg's effective use of aversive therapy in addressing such serious issues poses a challenge to the world to provide an effective alternative treatment. The parents who send their children there can not be easily dismissed as Ms Handon has shown. Insults and political correctness will not address these issues.

If an effective aversive treatment is going to be taken out of the hands of the Judge Rotenberg Education Center what will replace it? Ineffective drugs, physical restraints? Purely positive interventions even if ineffective? If the political correctness crusaders prevail will they accept responsibility for children with autism and other disorders who then go on to engage in self mutilating behavior and aggression to others?

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Wisconsin Teachers Improperly Restrained Students With Autism

Teachers in a Racine, Wisconsin school district, the Unified School District, have been improperly restraining autistic school children and other children with cognitive disabilities. The Journal Times Online reports that a young autistic boy had been restrained in a chair with a belt for up to 50 minutes a day, without his mother's knowledge, and without entering information concerning the restraint on his Individual Education Plan. The teacher's involved were using it to "remind him to sit" and lacked adequate training in behavioral interventions for autistic children.

The "educators" involved, the bureaucrats, and the politicians who fail to ensure that educators working with autistic children have adequate autism specific training all deserve a share of responsibility for situations like this. But so too do the "autism acceptance" ideologues who continually, despite decades of evidence of its effectiveness, try to denigrate Applied Behavior Analysis as a proven effective method of helping address problem behavior in autistic children and helping them make real social, communication and intellectual gains. The anti-ABA crowd provide cover to bureaucrats and politicians who want to avoid the financial cost of paying for ABA trained teacher aides and teachers, to provide autistic children with a real education free of unnecessary restraints.

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mGluR5 Spells Hope For Autism

Mark Bear, director of the Picower Institute and Picower Professor of Neuroscience (right), and Gül Dölen, a graduate student at Brown University,
report the correction of fragile X syndrome in mice. Photo / Donna Coveney

MIT News

Parents of autistic children have been preyed upon by purveyors of unproven treatments for their children's autism. But today there is hope, real hope, for autistic persons and the family members who care about their autistic children. Hope for an effective medical autism treatment is no longer something peddled by charlatans. We can now see it. We can even spell it. Hope for autism is spelled mGluR5.

mGluR5 is the shorthand for a metabotropic glutamate receptor. It was featured in the study led by Mark F. Bear, director of the Picower Institute and Picower Professor of Neuroscience at MIT published in the December 20 2007 edition of Neuron. The study by Professor's Bear's team supports the theory that many of FXS's (Fragile X's) psychiatric and neurological symptoms--learning disabilities, autistic behavior, childhood epilepsy--stem from too much activation of one of the brain's chief network managers, the metabotropic glutamate receptor mGluR5. As reported in MIT News:

Bear and colleagues study how genes and environment interact to refine connections in the brain. Synapses are the brain's connectors and their modifications are the basis for all learning and memory. There's a growing consensus among researchers that developmental brain disorders such as FXS, autism and schizophrenia should be considered "synapsopathies"--diseases of synaptic development and plasticity (the ability to change in response to experience).

Dendritic spines--little nubs on neurons' branchlike projections--receive many of the synaptic inputs from other neurons. Abnormal spines have long been associated with various forms of human mental retardation. In FXS, spines are more numerous, longer and more spindly than they should be. Thin spines tend to form weak connections.

The research team found that a 50 percent reduction in mGluR5 fixed multiple defects in the fragile X mice. In addition to correcting dendritic spines, reduced mGluR5 improved altered brain development and memory, restored normal body growth and reduced seizures--many of the symptoms experienced by humans with FXS.

The researchers used genetic engineering to reduce mGluR5, but a drug could accomplish the same thing. Although not yet approved by the FDA, mGluR5 blockers are entering into human clinical trials. "Insights gained by this study suggest novel therapeutic approaches, not only for fragile X but also for autism and mental retardation of unknown origin," Bear said.

As Christmas approaches families with autistic children may already have received our most wondrous gift of all - the knowledge necessary to provide an effective medical treatment for autism.

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Canadian Autism Prevalence Rates Different Than US Rates?

In early February 2007 the Center for Disease Control, the CDC, publicly revised its autism estimated prevalence rate from 1 in 166 Americans to 1 in 150. In Canada the Canadian Institutes of Health Research, the CIHR, web site indicates on its autism page, Health Research: Key to improving outcomes for children with autism, that "Autism, or more appropriately autism spectrum disorders (ASDs), affects an estimated 6 of every 1000 Canadian children." The calculator program on your computer will tell you that 6 in 1000 is roughly 1 in 166, the old CDC figure.

Why the discrepancy between the CDC's estimated prevalence rate and the CIHR's estimated Canadian rate? There are a number of possible explanations:

1) Canada, for reasons that could be environmentally or genetically based, could actually have fewer persons with autism spectrum disorders than the United States.

2) The CIHR may simply be using the old CDC estimate, unaware that the CDC revised its estimates of autism prevalence almost one year ago.

3) The CIHR may be aware that the CDC has changed its estimate but disagrees with the new estimate.

4) The CIHR may be aware of the newer CDC estimate and may agree with it; but can't be bothered to update its autism website information.

I am going to go out on a limb and guess that the correct answer is .... 4) The CIHR can't be bothered to update its autism website information. That explanation would be consistent with the attitude of the CIHR's political masters, the Harper government, which can't be bothered making a serious effort to address Canada's autism crisis.

And this is the same CIHR which said that it wants to build ties in Canada's autism community and help disseminate autism information to those communities? Maybe those of us who are merely ignorant parents, whose shoes will never be asked to tread the carpets of the CIHR national autism symposiums, should weigh carefully the information that ultimately emerges from those secretive conventions.

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Autism Consultation: US (Transparent) v Canada (Secretive)

Lisa Jo Rudy, host of About.com Autism posted a comment informing the public that the National Institute of Health (NIH) wants public feedback on autism research issues. In The NIH Wants YOU to Provide Recommendations for Future Autism Research! Ms Rudy provides the following information:

"Do you have specific ideas or direction for the NIH, as it implements the Combatting Autism bill? If so, now is the time to take action. The NIH has just issued an "RFI" (request for information) to the autism community, and they are seeking your input on next steps for research. Here's the essential information: Description

The purpose of this time-sensitive RFI is to seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions."

As a Canadian active in autism advocacy I am impressed with the American openness and true public consultation as reflected in the above referenced Request for Information. By contrast I am disgusted with the secretive, elitist, and politicized approach taken by the Canadian Institute of Health Research. In Canada the CIHR cancelled a planned National Autism Symposium when it found out that autism parent advocates wanted to play a real part in the symposium. It was rescheduled and described as a "research" symposium, with secretive, limited invitees, and with the implication that the parents who live 24/7, 52 weeks a year with autism realities could not possibly offer any intelligent contribution to the discussion. Oh Canada, we can do better than that.

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Study Details Atomic Structure of Autism Associated Proteins

Autism has been defined largely by behavioral deficits. That is changing though as new research is reported almost daily providing more detail on the neurological basis of autism. NEURON magazine in its incredible December 20 07 issue has published a report of a study showing it is possible to reverse some symptoms of Fragile X and some autism disorders. The same issue reports a study detailing, on an atomic level, the structure of altered proteins associated with autism.

In Structural Analysis of the Synaptic Protein Neuroligin and Its b-Neurexin Complex:
Determinants for Folding and Cell Adhesion Pascale Marchot and Igor P. Fabrichny, Institut Fédératif de Recherche-Jean Roche, Université de la Mediterranée; Philippe Leone, Gerlind Sulzenbacher and Yves Bourne, Universités Aix-Marseille; and Davide Comoletti and Meghan T. Miller, UCSD Department of Pharmacology, Skaggs School of Pharmacy and Pharmaceutical Sciences provide detailed data, charts and description of the structure of the neurologin family of proteins believed to be affected by genetic mutations and believed to be involved with autism and mental retardation.

In Atomic Structure of Proteins Altered in Autism the University of California, San Diego Health Sciences Press Release published on Newswise emphasizes that this study builds on previous studies but provides new detail:

“This goes beyond previous studies to show the individual atoms of these two proteins and how they interact,” said Palmer Taylor, Ph.D., Dean of SSPPS and the Sandra & Monroe Trout Professor of Pharmacology. “We have described the mutations found in some people with autism; and we have identified where the altered amino acids are located in the protein, and how they impact the folding and cell adhesion properties of neuroligin and neurexin.”

The research builds on earlier work that mapped the molecular structure of neuroligins and their partner proteins, neurexins – a protein complex involved in the junctions, or synapses, through which cells of the nervous system signal to one another. The new study, conducted with Pascale Marchot and Yves Bourne and their colleagues in Marseille, France, adds to a clearer understanding of how particular genetic mutations affect formation of this complex and contribute to the developmental abnormalities found in certain individuals with autism.

Normally, individual neuroligins interacting with specific neurexin partners are involved in synaptic adhesions, imparting ‘stickiness’ that enables them to associate and form synapses that have the capacity for neurotransmission. Incorrect partnering in these diverse protein families results when a mutant neuroligin fails to associate properly at synapses, preventing the normal transmission of brain cells.

The change in synaptic function may account for impairments in development, social interaction and communication displayed in individuals with autism spectrum disorders, according to the researchers.

The world is experiencing an Autism Knowledge Revolution. When knowledge grows superstition, prejudice, ideology and personal agendas wane in influence, in this case to the benefit of persons with autism.

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Today There Is Hope For Targeted Autism Treatments

Today's exciting news of Fragile X and autism symptom reversal in mice holds out hope for specific targeted treatment for entire autism spectrum according to medical experts interviewed by TIME in A Fix for One Type of Autism :

What was especially remarkable was the number of ways the intervention reversed Fragile X symptoms. The specially bred mice had fewer seizures, more normal brain structure, a more typical rate of body growth and they performed better on a learning task than mice with uncorrected Fragile X. The experiment suggests that treating Fragile X with a drug that inhibits mGR5 receptors could have similarly healing effects.

"This gives the whole field of autism a lot of hope for targeted treatments that can be beneficial," says Dr. Randi Hagerman, medical director of the MIND Institute and director of the Fragile X Research and Treatment Center at the University of California, Davis. "It's likely that the mGR5 pathway may be involved in other kinds of autism," she says. That means that a drug that works on this pathway could have broad application in treating autism.

TIME also reports that drugs that block the mGR5 receptor already exist and researchers are wasting no time setting up human clinical trials. Most parents whose children have been diagnosed for several years are disciplined by expert advice and ... disappointment and few are unlikely to get too wound up over today's news but it seems like one of the most promising breakthroughs to date for families seeking to treat and cure their autistic children.

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MIT corrects inherited retardation, autism in mice

Wow! This could be the best autism news of all in the year of the Autism Knowledge Revolution.


MIT corrects inherited retardation, autism in mice

Research points to potential drug treatment

CAMBRIDGE, Mass.- Researchers at MIT's Picower Institute for Learning and Memory have corrected key symptoms of mental retardation and autism in mice.

The work, which will be reported in the Dec. 20 issue of Neuron, also indicates that a certain class of drugs could have the same effect. These drugs are not yet approved by the FDA, but will soon be entering into human clinical trials.

Fragile X syndrome (FXS), affecting 100,000 Americans, is the most common inherited cause of mental retardation and autism. The MIT researchers corrected FXS in mice modeling the disease. “These findings have major therapeutic implications for fragile X syndrome and autism,” said study lead author Mark F. Bear, director of the Picower Institute and Picower Professor of Neuroscience at MIT.

The findings support the theory that many of FXS's psychiatric and neurological symptoms-learning disabilities, autistic behavior, childhood epilepsy- stem from too much activation of one of the brain's chief network managers-the metabotropic glutamate receptor mGluR5.

“Fragile X is a disorder of excess-excess synaptic connectivity, protein synthesis, memory extinction, body growth, excitability-and remarkably, all these excesses can be reduced by reducing mGluR5,” said Bear, a Howard Hughes Medical Institute investigator.

Individuals with FXS have mutations in the X chromosome's FMR1 gene, which encodes the fragile X mental retardation protein, FMRP. The MIT study found that FMRP and mGluR5 are at opposite ends of a kind of molecular seesaw. They keep each other in check, and without FMRP, mGluR5 signals run rampant.

Bear and colleagues study how genes and environment interact to refine connections in the brain. Synapses are the brain's connectors and their modifications are the basis for all learning and memory. There's a growing consensus among researchers that developmental brain disorders such as FXS, autism and schizophrenia should be considered “synapsopathies”- diseases of synaptic development and plasticity (the ability to change in response to experience).

Dendritic spines--little nubs on neurons' branchlike projections-receive many of the synaptic inputs from other neurons. Abnormal spines have long been associated with various forms of human mental retardation. In FXS, spines are more numerous, longer and more spindly than they should be. Thin spines tend to form weak connections.

The research team found that a 50 percent reduction in mGluR5 fixed multiple defects in the fragile X mice. In addition to correcting dendritic spines, reduced mGluR5 improved altered brain development and memory, restored normal body growth, and reduced seizures-many of the symptoms experienced by humans with FXS.

The researchers used genetic engineering to reduce mGluR5, but the same thing could be accomplished by a drug. Although not yet approved by the FDA, mGluR5 blockers are entering into human clinical trials. “Insights gained by this study suggest novel therapeutic approaches, not only for fragile X but also for autism and mental retardation of unknown origin,” Bear said.

Earlier this year, MIT Picower Institute researcher Susumu Tonegawa and colleagues reported positive results using a different approach to reversing FXS symptoms. Tonegawa and colleagues identified a key enzyme called p21-activated kinase, or PAK, that affects the number, size and shape of connections between neurons.

###

In addition to Bear, authors include Brown University graduate student Gul Dolen; Picower Institute postdoctoral fellow Emily Osterweil, B.S. Shankaranarayana Rao of the National Institute of Mental Health and Neuroscience in India; MIT graduate students Gordon B. Smith and Benjamin D. Auerbach; and Sumantra Chattarji of the National Center for Biological Sciences and Tata Institute of Fundamental Research in India.

This work is supported by the National Institute of Mental Health; the National Institute of Child Health and Human Development; the National Fragile X Foundation; FRAXA, a Fragile X research foundation; and the Simons Foundation.

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Another Autism Year Over and What Have We Done?

So this is Christmas
And what have you done?
Another year over
And a new one just begun

John Lennon, Happy Xmas (War Is Over)

A year can mean a lot in the lives of children with autism and other pervasive developmental disorders. On December 5 2006 the Canadian House of Commons passed a private members' motion, M-172, put forward by MP's Andy Scott and Peter Stoffer. Since then the government has done precious little to achieve the goals set out in the motion:

Motion M-172, as passed by the House of Commons on Tuesday, December 5, 2006.

That, in the opinion of the House, the government should create a national strategy for autism spectrum disorder that would include:

a) the development, in cooperation with provincial/territorial  governments, of evidence based standards for the diagnosis and
treatment of autism spectrum disorder;

b) development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum
disorder;

(c) consulting with provincial/territorial governments and other stakeholders on the requirements of implementing a national
surveillance program for autism spectrum disorders; and

(d) the provision of additional federal funding for health research
into autism spectrum disorder.

Since December 5 2006 little has been done to achieve the goals set out in M-172. Time was squandered on a secretive autism symposium that was NOT an exercise in community building.

The items requiring consultation and cooperation with provincial government, in particular the development of innovative funding methods for the care of those with autism spectrum disorder did not happen. Or at least it did not happen with any public participation or awareness.

Canada, under the government of Stephen Harper, another autism year over and not much has been done.

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Environmental Causes of Autism

One of the most succinct arguments in support of an environmental theory of autism can be found in a fact cited by autism expert Simon Baron-Cohen, Director of the Autism Research Centre, Cambridge University :

Autism and Asperger’s syndrome run in families. If there is one child who has a diagnosis on the autistic spectrum, the likelihood of another child also having a diagnosis is about 5-10 per cent, which is higher than the general population rate. Molecular genetic studies are focused on identifying the key genes that might play a role in increasing the risk of a diagnosis. Studies of twins have established that it is not 100 per cent genetic, since even among identical twins, when one has autism, the likelihood of both twins having autism is only about 60 per cent. This means there must also be an environmental component, but what it is remains unknown.

Simon Baron-Cohen, Freedom of Expression, TIMESONLINE, December 14, 2007

What are the unknown environmental components of autism? Mercury is the most often mentioned. Lead is another frequently mentioned environmental suspect. In Autism Can Be Treated Dr. Carolyn Dean lists these and several other possible environmental contributors to the development of autism in some persons and offers her explanation of how these substances can be contributing factors in the development of autism:

When you allow yourself to go beyond the behavioral model of autism you will find research showing that one pivotal metabolic insult to an infant who develops autism is damage to a specific kinase enzyme. In a vulnerable segment of the population, perhaps 10%, a particular gene sequence can be damaged by heavy metals (mercury in children’s vaccines or flu shots and dental amalgams in the elderly), antibiotics, alcohol, and acetaminophin. This vulnerable gene sequence is found in people who have autism and Alzheimer’s; it is the template for creating the kinase enzyme P13. Some researchers refer to this gene sequence as the Alzheimer’s gene, which is damaged early in these children by of overwhelming metabolic insults.

Why is kinase P13 so important? The body requires kinase P13 for many tasks, one of which is to help break down gluten (a wheat, rye, oats, and barley protein) and casein (a milk protein). This same enzyme allows the methylation (or biochemical modification) of certain B vitamins. Without proper methylation of B12 into methylcobalamin and folic acid into folinic acid, hundreds of functions are impaired. For example, if you don’t have methylcobolamine, your liver can’t make glutathione (a powerful antioxidant). Without glutathione the body is not able to detoxify heavy metals. The vicious cycle is complete. The heavy metal that causes the gene damage in the first place is not excreted as it should be and continues to accumulate and cause more damage. So intricate are these pathways that giving children the wrong kind of folic acid or B12 can make matters worse; consequently autism therapy must be overseen by knowledgeable parents and practitioners.

Dr. Dean is an advocate of the DAN protocol which includes behavioral treatment along with the more controversial GF-CF diet treatment. Research is genetic causes of autism has been exploding in recent years, and hopefully will continue to provide more information about autism and its causes. Hopefully too the potential environmental causes of autism, including mercury, will be fully researched and cures developed. Some parents today prefer to find joy in their child's autism but I believe that most would cure their children and give them the richer life to which most of us aspire ...... if a cure were to become available. Given the likelihood of both genetic and environmental causes of autism, working in combination, it seems likely that autism cures will involve treatment or prevention of environmental insults to children with susceptible genetic heritage. Hopefully the necessary research will be permitted to continue and will not be shut down by the next misguided, hysterical, "autism is beautiful", campaign.

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An Autism Dad Thanks Dr. Harold Koplewicz

Dr. Harold Koplewicz
New York University Child Study Center

Dear Dr. Koplewicz

I am writing as the father of a severely autistic boy nearing 12 years of age in New Brunswick, Canada. I started an autism blog site called Facing Autism in New Brunswick 16 months ago as a means of lobbying local and national government, educators and autism service providers. I also started it, in part, because of the lack of internet sites focusing on the real needs of autistic children and adults and their families. Much of the internet "autism" fare really reflects a subgroup of SOME high functioning autistic persons and a handful of parents who all have one element in common: they all glorify autism as something other than what it is, a serious neurological disorder which impairs the lives of autistic children and adults.

For this group, as alluded to in the New York Times article, "harsh-upsetting" language describing autism is more upsetting than the harsh-upsetting realities of autism. It is this highly organized internet community which reacted with hysterical outrage to the "Ransom Notes" campaign just as they did to the Autism Every Day video and all other efforts to portray the negative realities that restrict the lives of many people with autism. They do not, however, speak for parents like myself, with an autistic son who does not understand language on such a level that he would be offended by the imagery of the Ransom Notes campaign, imagery which I personally find provocative but not unduly harsh or upsetting.

I do not find honest accurate description of autism realities to be harsh or upsetting. Not when compared to the real challenges faced by autistic children who injure themselves, walk into dangerous daily life situations unaware of the risks, appear in news stories as having wandered away, often, but not always, to be found safe, or who live their lives as adults in the care of strangers. As such a parent I thank you for the Ransom Notes campaign which was a courageous effort to break through the persistently trivializing autism awareness campaign of those who organized the petition and drive to silence the voices of those who inspired the Ransom Notes campaign.

I recently received a message on this blog site from an "anonymous" poster. The message appears to have been sent to me by mistake as part of a spam style mail out of anyone who posted on the Ransom Notes topic at one of the internet sites organized to quash the campaign. I posted there in opposition to that effort. The message I received is part of a continuing effort to harass you and NYU for your effort to raise public awareness of the seriousness of autism disorders. It states:

"NEXT STEPS -
they are not hearing us

They have not responded to our requests to pull the campaign and it sounds like we are really emboldening Harold Koplewicz and his boss, Robert Grossman, appears to be letting Koplewicz see the campaign through. I found some contacts that are over both of their heads and we need to promote a major emailing, writing and phone calling campaign to Medical Center Board Chairman Kenneth Langone, NYU President John Sexton, and NYU Trustee Chairman Martin Lipton. Here is their contact info; PLEASE help get the word out."

I do not subscribe to the views of the organizers of the "shut down Ransom Notes" campaign and I am not alone. As the host of a site where I try to discuss the WHOLE autism picture, positive and negative, I occasionally receive emails from parents appreciative of the honest portrayal of autism that I try to present here. As a father I appreciated the courage of the parents featured in the Autism Evey Day video who addressed the harsh-upsetting realities confronting their autistic children. And I appreciate your courage in addressing these realities. Many parents are busy trying to help their autistic children, go to work, and care for other family members and not everyone is willing to risk the public condemnation that you have endured at the keyboard busy hands that have opposed the Ransom Notes campaign.

I sincerely thank you for your efforts to portray the realities of autism and to create true autism awareness.

Harold Doherty
Fredericton, NB, Canada

autism

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Autism and Translational Research at the University of Nebraska Medical Center

Translational Research is a term which not often seen on autism internet sites. For professionals, parents and other family members and care givers actually trying to help improve the outlook for autistic children and adults though Translational Research is an important element of what they are trying to do in helping their autistic loved ones and patients.

The NIH Roadmap for Medical Research defines Translational Research:

Translational Research

Overview

To improve human health, scientific discoveries must be translated into practical applications. Such discoveries typically begin at “the bench” with basic research — in which scientists study disease at a molecular or cellular level — then progress to the clinical level, or the patient's “bedside.”

Scientists are increasingly aware that this bench-to-bedside approach to translational research is really a two-way street. Basic scientists provide clinicians with new tools for use in patients and for assessment of their impact, and clinical researchers make novel observations about the nature and progression of disease that often stimulate basic investigations.

Translational research has proven to be a powerful process that drives the clinical research engine. However, a stronger research infrastructure could strengthen and accelerate this critical part of the clinical research enterprise. The NIH Roadmap attempts to catalyze translational research in various ways.

On Monday, December 17, 2007, Dr. Wayne Fisher, director of the University of Nebraska Medical Center will be making a presentation entitled "Integrating Basic and Applied Research in the Treatment of Autism at UNMC. " The presentation will discuss how the application of basic behavioral research principles in a treatment setting has allowed Dr. Fisher, H. B. Munroe, Professor of Behavioral Research at UNMC and their team to significantly improve care for those with autism and related conditions. Says Dr. Fisher : " "This approach has allowed us to develop more efficient and refined procedures that target the specific environmental causes of problem behavior".

autism

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