Autism cures?

[Snowden]

Autism cures?
By Thomas Sowell

Judaism: The Jewish site | "New Ways to Diagnose Autism Earlier" read a recent headline in the Wall Street Journal. There is no question that you can diagnose anything as early as you want. The real question is whether the diagnosis will turn out to be correct.

My own awareness of how easy it is to make false diagnoses of autism grew out of experiences with a group of parents of late-talking children that I formed back in 1993.

A number of those children were diagnosed as autistic. But the passing years have shown most of the diagnoses to have been false, as most of these children have not only begun talking but have developed socially.

Some parents have even said, "Now I wish he would shut up."

I did absolutely nothing to produce these results. As a layman, I refused to diagnose these children, much less suggest any treatment, even though many parents wanted such advice.
As word of my group spread, various parents would write to ask if they could bring their child to me to seek my impression or advice. I declined every time.

Yet, if I had concocted some half-baked method of diagnosing and treating these children, I could now claim a high rate of success in "curing" autism, based on case studies. Perhaps my success rate would be as high as that claimed by various programs being touted in the media.


If a child is not autistic to begin with, almost anything will "cure" him with the passage of time.

My work brought me into contact with Professor Stephen Camarata of Vanderbilt University, who has specialized in the study of late-talking children-- and who is qualified to diagnose autism.

Professor Camarata has organized his own group of parents of late-talking children, which has grown to hundreds, as compared to the several dozen children in my group. Yet the kinds of children and the kinds of families are remarkably similar in the two groups, in ways spelled out in my book "The Einstein Syndrome."

The difference is that Professor Camarata is not a layman but a dedicated professional, with decades of experience-- and he too has expressed dismay at the number of false diagnoses of autism that he has encountered.

What Camarata has also encountered is something that I encountered in my smaller group-- parents who have been told to allow their child to be diagnosed as autistic, in order to become eligible for government money that is available, and can be used for speech therapy or whatever other treatment the child might need.

How much this may have contributed to the soaring statistics on the number of children diagnosed as autistic is something that nobody knows-- and apparently not many people are talking about it.

Another factor in the great increase in the number of children diagnosed as autistic is a growing practice of referring to children as being on "the autistic spectrum."

In other words, a child may not actually be autistic but has a number of characteristics common among autistic children. The problem with this approach is that lots of children who are not autistic have characteristics that are common among autistic children.

For example, a study of high-IQ children by Professor Ellen Winner of Boston College found these children to have "obsessive interests" and "often play alone and enjoy solitude," as well as being children who "seem to march to their own drummer" and have "prodigious memories." Many of the children in my group and in Professor Camarata's group have these characteristics.

Those who diagnose children by running down a checklist of "symptoms" can find many apparently "autistic" children or children on "the autism spectrum."

Parents need to be spared the emotional trauma of false diagnoses and children need to be spared stressful treatments that follow false diagnoses. Yet the "autism spectrum" concept provides lots of wiggle room for those who are making false diagnoses.
Real autism may not get as much money as it needs if much of that money is dissipated on children who are not in fact autistic. But money is money to those who are running research projects-- and a gullible media helps them get that money.


Thomas Sowell

[Woodmonkey]

Autism and a Link to Brain Development

By Nancy ShuteMon Jul 14, 12:34 PM ET

It's been an amazing year for discoveries about autism and genes-and it's only July. The latest news: Some genes involved in the disorder may affect the brain's ability to develop in response to experience, a key aspect of learning.

That follows the report in January that scientists with the Boston-based Autism Consortium had found a genetic variation on chromosome 16 shared by 1 percent of people with autism. In March, researchers reported that about 15 percent of autism cases result from random spontaneous mutations that are unique to each person, rather than an inherited "disease gene."

Now it appears that those random mutations may mess up the wiring at a critical time when experience helps shape the developing brain. This latest bit comes from researchers at Harvard University, who analyzed the genes of 88 Middle Eastern families in which cousins had married. Intermarriage increases the odds that rare mutations will occur and be passed on, making patterns easier to find. The researchers' results, published in Science, are not a slam dunk, but they do provide more evidence that gene-hunting scientists are on the right track.

Daniel Geschwind, a professor of neurology at the University of California-Los Angeles who studies the genetic basis of autism, says he's most intrigued by the indication that genes that at first glance appear to have nothing in common might actually be linked by the fact that they are vital to brain development and are turned on and off by the brain's response to experience. It makes sense, since symptoms of autism emerge in early childhood, when the brain is feverishly forming new connections. If the genes are turned off, maybe those connections don't form. It's also when children are learning speech and social interaction, two key abilities often impaired by autism. This may explain why using behavioral therapies as early as possible, in which children practice social interaction and communication, are the best treatment so far for autism.

On the treatment front, chelation therapy is also in the news, with the announcement that the National Institutes of Mental Health is moving closer to studying the effectiveness of this controversial treatment for autism.

Chelation is designed to treat poisoning by heavy metals, such as lead. Since one theory is that autism can be caused by exposure to mercury, a toxic metal that was used until 2003 as a preservative in early childhood vaccines, it makes sense to think chelation might help. But there is no validated research on its value as an autism treatment. Most doctors say it is ineffective and could be dangerous. On the other hand, some parents of children with autism think chelation has been hugely helpful in reducing symptoms. About 2 percent of children with autism participating in the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore have had chelation therapy, according to the Associated Press. Since there is no evidence-based medical treatment for autism right now, parents are really on their own in trying to figure out what works best. It's not a pleasant place to be.

Earlier this week, the Associated Press reported that Tom Insel, the director of the National Institute of Mental Health, supports testing the effectiveness of chelation therapy on children to see if it can be proved safe and effective. The autism blogosphere lit up, and advocates of chelation therapy were elated. But as with all things concerning autism, alas, the story's not at all simple.

The chelation study was first approved by NIMH in 2006. In February 2007, a study showed that giving chelation to rats who weren't suffering from heavy-metal poisoning caused permanent cognitive impairment. Whoa. That sent NIMH back to more risk-benefit analysis. It filed an application with the Food and Drug Administration to study chelation as an investigational new drug (an IND, in FDA-speak).

The knowledge gleaned from the study will be limited, since only 120 children are to be enrolled: half will get chelating agent for 12 weeks and the other half, a placebo. The children's blood mercury levels and autism symptoms will be monitored along the way. That's too few subjects to get a clear sense of whether chelation works. But it's better than what we've got now.

This kind of testing, which will follow standards used for clinical trials on FDA-approved drugs and treatments, is what's desperately needed for alternative medical treatments, particularly those given to children. After secretin became popular as an autism treatment in the 1990s, it took years for scientists to get around to doing trials. When they did, no benefit was found, and secretin has been largely abandoned.

When doctors choose new treatments to study, they pick the ones they think are most likely to succeed. Since most mainstream docs think chelation and other alternative treatments are quackery, those treatments don't get picked. Yet if the docs would buck convention and apply solid scientific analysis to these treatments, parents would start getting the good information they desperately need in making choices about treatments.

Clinical trials are risky, especially with children. But thousands of parents are already experimenting on their kids. They deserve some help from the pros.

The Source

[Woodmonkey]

Autism: Where's the Support?

There is a family down the street whom I envy.

I've never met them. They live in a two-story white house -- a mother, a father and their grown son. Outside is a trimmed yard with rosebushes and a wooden arbor where the men work on weekends.

The dad, who looks to be near 60, pushes a wheelbarrow or carries a set of shears. The son could be 20 -- the age of my oldest child -- or 40. He is a short, egg-shaped man. He walks behind his father, carrying large shovels and bags of dirt and the like. He works tirelessly, from what I can see, and talks most of the time.

On weekdays, when I am taking my youngest child to school, I sometimes see him holding a cloth lunch bag and boarding a small bus. I imagine that at work he is as cheerful and productive as he appears to be with his father on Sunday afternoons.

The fact that this man has Down syndrome is clear. He has the telltale almond-shaped eyes and short limbs. I know that he could suffer from any number of medical conditions, from heart defects to epilepsy, and that his cognitive functioning is probably impaired.

Still, I envy his parents.

My grown son has autism. And while I wouldn't trade him -- the person to whom I gave birth -- for any other, I wish that his disability were as recognizable as Down syndrome and that we, his parents, were more effective at helping him achieve a satisfying life. Right now, we're flummoxed by the issues that arise as a child with autism veers into adulthood: higher education, employment, independent living, romance. In all these areas, family members of those with Down syndrome have figured out a cohesive, workable system of support.

They have some advantages that we don't. First, Down syndrome is quantifiable: There is a definitive diagnosis and a general similarity of experience. It doesn't have the random diversity of autism, which spans a range from nonverbal to simply rigid and from low IQ to extremely high. Second, those parents have mobilized. Parents of children and adults with Down syndrome routinely trade information and assist one another in accessing care.

Third -- and most important -- they have carved out a place in society for their children. It's a hackneyed myth that people with Down syndrome are uniformly happy, but it is true that they have the capacity for joy and that their community has ensured they have a breadth of options -- career, marriage, dignity.

This is what we who love people with autism must do.

My son is flailing in a system that doesn't know how to deal with him. I admit I'm of little help. He doesn't look different from other 20-year-olds, and he happens to be of normal intelligence. But socially, he is as lost as he was at age 4, when he withdrew, quit speaking and stared for hours at his own hand. Over the past year, he's been placed in a series of group homes for people with mental retardation or psychosis. None has been right.

His senses are overly acute, which means he experiences the world largely as pain. Noises, colors, smells -- they're all too vivid. He is prone to sleeping his days away rather than working in the yard. He likes dark rooms and movies and has the urge to date but cannot work up the nerve to speak to girls, much less ask one out.

At this time there are no resources, the county social worker tells me. My son doesn't fit in any of the current residences, jobs programs or schools. There are not enough "waivers" available to provide appropriate housing or treatment for the deluge of young people like him. Worse, the community of parents dealing with autism has splintered over philosophical issues, such as causal factors and wholesale acceptance vs. finding a cure.

Twenty years from now, I hope that things will be different -- that we'll have learned to cooperate.

Today, more than 90 percent of fetuses tested and found to have Down syndrome are aborted. The power of their parent group is shrinking, as is the world's mosaic of human form.

I'd like to knock on my neighbors' door and ask them how it's done. Tell me the secret to sharing your home with a grown child, I would say, while allowing him the space to become an adult with his own life. Show me how to create unity among families. I may do this yet.

Someone has to talk to those wise parents before they die out, or I fear our children with autism will continue to wander through a world where they never fit.

Ann Bauer, a writer in Minnesota, is the author of the novel "A Wild Ride Up the Cupboards."

The Source

[Woodmonkey]

Autism parents 'infection risk'

Caring for children with developmental problems such as autism or Down's syndrome can weaken parents' immune systems, research suggests.

Researchers at Birmingham University found they had a poorer immune response to a vaccine against pneumonia.

It appears that stress causes the immune system to function less efficiently, the team wrote in the journal Brain, Behavior, and Immunity.

Charities called for better support for parents struggling to cope.

Previous work has shown negative effects in elderly people caring for a spouse - but this is the first time that a similar result has been seen in a younger, healthier group providing round-the-clock care, the researchers pointed out.

This is a good indication that their immune systems are not functioning efficiently
Stephen Gallagher, study leader

A total of 60 parents received the pneumococcal vaccine as part of the study - half of whom had children with developmental disabilities.

Blood tests showed that those caring for a child with developmental disability had lower levels of antibodies to the vaccine than those whose children did not have such difficulties.

After one month, 20% of parents providing long-term care had an ineffective immune response, compared to 4% of the control group. At six months this had risen to 48% while the levels in the control group remained the same.

Stress

Study leader Stephen Gallagher said low levels of antibodies suggested parents' ability to fight infection was weaker: "This is a good indication that their immune systems are not functioning efficiently."

Stress was likely to be responsible for the immune deficiency, he added.

"These parents are sometimes extremely stressed and what they need is appropriate help and training."

Co-author Dr Anna Phillips said parents caring for these children are "incredibly dedicated" and not in a position to take time off.

"However, knowing the effects that providing round-the-clock care can have on their health may help raise awareness that these parents need help to manage their burden of care."

She said the parents should be added to the list of vulnerable groups eligible for vaccinations such as the flu jab.

"We are continuing this work by looking at how sleep patterns affect the rates of infection in these parents," she added.

Amanda Batten, head of policy and campaigns at the National Autistic Society, said: "Carers often display great strength and resilience whilst coping with this complex disability, but many receive very little help and support, and are under considerable stress as a result.

"It is imperative that carers are given access to services such as short break schemes to help them before they reach a crisis point."

Carol Boys, chief executive of the Down's Syndrome Association, added: "I am not surprised at the results of this study. It just confirms what we already suspected might be one of the consequences of the constant stress that families have to endure."

The Source