AutismWatch
Friday, July 11, 2003
 
Getting Angry

Sometimes reading autism news reports just makes me angry. For instance, when I read about a school bus driver who just forgets about a four year old autistic child and leaves the child alone in a school bus for five hours in 90 degree heat, anger starts to build inside me.

Newsday has the report:
A 4-year-old boy with autism was left on a school bus for five hours in Monday's 90-degree heat, and the bus driver has been charged with child neglect, authorities said.

The boy, whose name was not released, was among a group of students in a summer program for children with disabilities sponsored by the Hunterdon-Raritan School District, said Capt. Glenn S. Tabasko of the Raritan Township Police Department.

Tabasko said the boy was treated at a hospital for heat exhaustion and released.

Tabasko said the boy was left on the bus inadvertently at 8 a.m., after the driver, John Davis, 57, of Readington, dropped children off for the program's morning session at the Copper Hill School in Raritan.

Davis then parked the bus in the district's transportation yard. He returned at 1 p.m. for his afternoon run.

"Of course, he didn't realize the kid was on the bus," Tabasko said.

The child was discovered by Copper Hill School personnel who were helping students board the bus for the ride home.

School Superintendent Jack Farr said in a statement Wednesday that the school board could act on his recommendation that the driver be fired at its meeting on July 21.

Next, I read about some thief stealing $2,500 worth of adapted trikes from autistic kids, and I just get even angrier. Here is the story:
Thieves have wheeled away some very special tricycles in Watervliet.

The autistic children at the Saint Coleman's Home are without some of their favorite playthings. At some point over the holiday weekend, someone stole three of their tricycles. Each trike was designed specifically for use by the mentally disabled.

Group Home Services director Robert Salisbury said, "The children that use them don't have the motor skills to ride a regular bicycle, so it's important that they have equipment that they can use on a regular basis for exercise and for recreation in the afternoons."

The most expensive tricycle cost $1,500 in grant money. Budget cuts will prevent the Saint Coleman's Home from replacing them this year.

Fortunately, just when I think I am going to burst a blood vessel, I find a story of hope fulfilled and dreams becoming real. If the previous two stories made you angry, read this one. It will take to back to a nicer spot.


 
Thursday, July 10, 2003
 
I Just Became a Jeff Kent Fan

Jeff Kent is a baseball player for the Houston Astros. Although I have never been much of a Kent fan, I became one today after reading an article sent by Charles Kuffner:
Speaking of Kent, the second baseman recently and unknowingly made a big impact on a family simply by taking a little extra time for a special kid.

The Santos family was one of hundreds to attend the Astros' FujiFilm Photo Day a couple of weeks ago. Players made their way around the warning track posing for pictures for the more than 3,000 fans who attended the promotional event. When Kent made his way over to where the Santos' were stationed, he spoke with six-year-old Phillip Santos, who didn't immediately respond.

Kent, having no idea that Phillip is autistic, continued to speak to the youngster, and after a few moments, Phillip's face lit up in response to Kent's attention.

Phillip's mother, Laura, was thrilled to see her son respond, something that sadly occurs only on occasion.

"(Kent) stopped and he was so patient and warm and Phillip was actually starting to interact," Laura said. "Anytime I see that it's just a miracle to watch that happen."

Laura emailed a thank you note to an Astros employee with hopes that it would be passed on to Kent. The Astros went a step further and invited the family to Minute Maid Park to watch batting practice on Wednesday, to be followed by a private meeting between Kent and Phillip.

Laura Santos laughed when she admitted that she didn't know who Kent was on that FujiFilm photo day, but it's safe to say she'll not soon forget the impact Kent had on her son.

"He didn't know that my son was autistic," she said. "He was just being who he is -- a celebrity trying to put people at ease in his presence. And it worked."

Sure, Jeff Kent did not know that Phillip Santos is autistic. Do I care? I do not. POA’s will take small victories anywhere we can find them. Thanks Mr. Kent. You did a nice thing.
 
 
“36 Months After the First Symptom Appears”

Autistic kids often have difficulty pointing and showing objects to other people. As one researcher has said:
We have known for a long time that children with autism have special difficulties with pointing and showing objects to other people. Until recently, however, many researchers believed that this problem was due to the child's lack of awareness that people's thoughts and reactions were directed towards objects and events in the world around them.

The Atlanta Journal Constitution reports on a new study that suggests a different basis for the difficulty with pointing and showing objects:
Early problems with simple face-to-face interaction may be responsible for the difficulties autistic children have in pointing and showing objects to other people, says new British research.

The results of the two-year study from the University of Durham could provide better understanding of the early language and communication problems found in children with autism…

"Our new research suggests a different interpretation -- that the failure to point and show things to others may emerge from much simpler beginnings of face-to-face interaction. These findings indicate that the problems may start even earlier in development than previously recognized," Leekam says…

The researchers found an autistic child's difficulty in responding to face-to-face interaction was strongly related to the problem of pointing and showing.

Autistic children who did no pointing or showing objects to the adults were those most impaired in face-to-face interaction.

That research highlights a problem with the Vaccine Injury Compensation Program. The VICP allows persons injured by a vaccine to seek compensation through an administrative proceeding. To be timely, the VICP requires that “the claim must be filed within 36 months after the first symptoms appeared.”

If (and despite mounting evidence the “if” remains) vaccines cause autism, when must a claim with the VICP be filed?

The vaccines are given to infants. Autism is often not diagnosed until age three or later (we got our diagnosis when Bobby was two). Under the VICP, the claimant has three years from the time “first symptoms appeared.”

It could be argued, based on the research noted above, that the “first symptom appeared” the first time the child showed difficulty with ”face to face interaction.”

The trouble, of course, is that every child, autistic or not, shows difficulty with face to face interaction at some time and to some degree. It is only in retrospect that we link such behavior to autism.

A second trouble is that no one notes the date on which the “first symptom appears.” Concern grows gradually over time. I can not look back and name the date on which I first became concerned about what we now recognize as Bobby’s autistic behaviors.

The VICP statute of limitations may work well for some conditions that have an obvious onset. For autism, tying the statute of limitations to the “first symptom” is unworkable and unfair.

I propose that the VICP be amended to provide that in cases of autism, the statute of limitations begins to run on the date the parent receives a written diagnosis of autism from a competent professional. That date can be determined with reasonable certainty and is fair to all concerned.



 
Tuesday, July 08, 2003
 
A Sad Tale


Parenting is hard. Being the parent of a full spectrum autistic child is even harder. Having an autistic child involves a lot of extra work and imposes certain limitations. We have to make sure that the doors stay locked and that no keys are within reach. Maintaining a normal social and family life is a challenge. Bobby requires a lot of time, energy and attention. There is perpetual tension between those needs and the needs of our older son.

The most difficult part of raising a full spectrum autistic child, however, is dealing with the worry about the future. I am 49. Bobby is eight. If I am lucky enough to be able to care for Bobby until I am eighty, Bobby will be thirty-nine. What will happen to him then? Those are the issues that my wife and I discuss and worry about at 3:00 a.m.

All we can do as parents is to prepare as best we can for the day on which we will no longer be able to care for Bobby. The preparation includes lots of work to make Bobby a independent as possible. We hope that he can master sufficient life skills to live independently or perhaps in a group home. If he does not master those skills, what will happen to him when we are no longer able to provide care?

A story I saw in the Philadelphia Inquirer addressed that issue in a very sad way. It is the story of Stanley and Ronnie Mich.

In about 1938, Stanley and Ethyl Mich had a baby boy they named Ronnie. Ronnie is autistic. Ethyl died in 1950 when Ronnie was twelve. After her death, Stanley Mich dedicated his life to taking care of Ronnie and providing for his future.

Stanley Mich delivered newspapers and sold potato chips and candles along his route. Being concerned about Ronnie’s future, he lived very frugally. He never took a vacation and saved his money. Investments in phone stocks did well and added to his savings.

When Stanley Mich was well into his eighties, he thought that he had secured Ronnie’s future. The house where Ronnie had lived his entire life was paid for and Stanley had amassed an estate of $1.2 million dollars. That was enough to pay for full time care for Ronnie while Ronnie lived in the family home.

Autistics do not easily make transitions and Stanley promised Ronnie that no matter what happened to Stanley, Ronnie could live in the house.

Stanley spoke with Dennis O’Brien about Ronnie’s care. O’Brien was parishioner at the Catholic Church Stanley attended and was also lawyer. Stanley Mich named O’Brien as the executor of his estate and as the guardian of Ronnie.

Stanley died of cancer in 2000. Because of the money in Stanley’s estate, Ronnie remained in the family home and had a caregiver with him.

Two years later, a neighbor of the Mich family noticed that the bank had posted a property tax delinquency notice concerning the Mich house. The neighbor decided to investigate.

It turned out that O’Brien was a crook. He had been disbarred and he stood accused of stealing money from a number of clients and elderly people.

Of the more than a million dollars that Stanley worked, scrimped and saved to provide for Ronnie’s future, only $167 remained. O’Brien stands charged with theft, money laundering and embezzlement.

Ronnie was forced to leave the home he had lived in for more than 60 years. He was forced to adapt to changes in the environment and routine that had permitted him to live a happy life. Ronnie now lives at a home for disabled seniors. The taxpayers pick up the $50,000 a year charge.

And that is why my wife and I are often up at 3:00 a.m. We have lots of worrying to do.

Cross Posted at PLA.
 
Monday, July 07, 2003
 
Multiple Causes?

In the last few days, AutismWatch has linked to articles that suggest at least four separate causes of autism. Those potential causes include 1) mercury in infant vaccines; 2) the measles component of the MMR vaccine (which contains no mercury); 3) the pasteurization of milk; and 4) “the body's exposure and reaction to volatile organic compounds -- chemicals used in paints, chlorinated water and petroleum products, among other things.”

In addition to those four, research suggests a genetic component to autism.

It is hard to know what to make of the fact that there are so many possible causes of autism. There are at least three explanations for the multitude of possible causes.

First, it may be that there are so many causation theories because autism research is in its infancy. As a greater understanding of autism is gained, some causes will be disproved and others will arise. Please remember that at one time it was thought that AIDS had some relationship to Haitian descent. Thus, it may be that the multiplicity of possible causes stems from our lack of understanding of autism and that additional research and study will clarify the matter.

Secondly, it may be that there is one cause of autism and we simply fail to recognize the commonality of that factor in the various possible causes. Extending the analogy above, AIDS, in a sense, has multiple causes. The HIV virus can be spread by unprotected sex, dirty needles, blood transfusions, and in other ways. Until the relationship between AIDS and HIV was established, it was not readily apparent that there was a commonality in the “causes” of AIDS. Once the relationship between AIDS and the HIV virus was established, the commonality of contact with bodily fluids of HIV infected persons was apparent. It may be that once we understand the nature and mechanism of autism, a commonality of all of the above causes will become apparent.

Third, unlike HIV, there is not yet a blood test or similar test for autism. Autism is a set of behaviors. It is diagnosed by observing the subject and seeing if he or she (usually “he”) exhibits a sufficient number of specified behaviors to be deemed autistic.

The existence of common behavior does not demonstrate a common condition. It may be that there are a number of different things that cause similar behaviors.

For example, let us assume that we observe a small group of the population that exhibits the behavior of walking head first into walls. Like autistics, each of those persons exhibits common behavior. It might be natural to group those people together and say that they have a common condition but doing so would confuse rather than clarify the underlying issues.

Upon study, it might be revealed that the cause of the common behavior was different for each of several groups of people who walk into walls. Some might be blind, some drunk, some might have inner ear problems, some might be masochists who love to bang their heads against walls, and some, like Brad Delong, might simply be learned economists doomed to observe the policies of the Bush administration.

Just as the behavior of walking into walls could result from vastly different causes, so it might be with autistic behaviors. All of the above listed potential causes and many others, either singly or in combination with genetic predisposition or other factors, could be causes of autistic behaviors in some people.

If that is the case (and at this point it is just speculation), then instead of thinking about autism as a unitary condition with a single cause, we should be thinking about autism for what it really is, a collection of behaviors. There may be many subgroups of autism, each of which has its own etiology.

If autistic behaviors result from a variety of causes, the search for statistically valid proof of causation will be greatly complicated.

Let’s take a concrete example. Suppose that we hypothesize that some interaction with gluten causes autism. Suppose further that our hypothesis is true for a small portion of the persons who exhibit autistic behaviors.

We design an experiment to test the hypothesis. We recruit 100 kids who exhibit autistic behaviors, and test those kids to determine their level of functioning on whatever criteria we decide to use (say, eye contact and finger flapping). We then randomly divide the group into two fifty-person groups and provide all of the food to all 100 of the subjects. The experimental group will be given completely gluten-free foods while the control group will consume gluten as a regular part of the diet.

After the experimental period, we retest all 100 subjects for eye contact and finger flapping. We then look to see if there was statistically significant improvement in the experimental group as opposed to the control group.

Let’s say that, through random chance, the experimental group had a disproportionately large number of kids whose autistic behaviors were caused by gluten. Our results will indicate that the improvement through a gluten-free diet is statistically significant.

A second research group sets out to duplicate our results. On that occasion, the number of gluten-sensitive kids, through random chance, is underrepresented in the experimental group. The results of the first experiment will not be duplicated.

In order to get meaningful results from such experiments, we need to identify the subgroups and select from among those when setting up our experiment.

To identify the subgroup of gluten-sensitive kids, we could test our hypothesis on a very large number of subjects and then run a second test among those showing improvement.

The trouble with that idea, of course, is that it ignores the very real interests of the children and their families. If my son Bobby participated in an experiment and made great developmental strides after being taken off gluten, I would be thrilled. If the researchers then asked that Bobby participate in the second test in which he had a 50% chance of being fed gluten with the risk that he would lose his developmental gains, the chances that I would agree to do so are exactly zero.

I have watched Bobby halt his development and gradually fall into an autistic shell. I have watched as he lost skills we fought hard to obtain. I have been there, done that, and gotten the tee-shirt. I will not willingly do so again.

That may not be best for the advancement of science and understanding of autism, but it is the truth.


A version of the above has been posted at PLA.
 
 
Citizenship Denied as a Result of Autism

The Charlotte Observer reports on the efforts of a Canadian family to become American citizens:
It was the day Peter and Beverly Chai-Seong of Cary and their three sons had waited eight years for.

The family from Canada went to the Charlotte immigration office to become U.S. citizens on June 6, but their plans soured when workers delivered bad news: 17-year-old Jeffrey couldn't be sworn in because he is autistic and can't speak the oath…

Congress passed a law in 2000 permitting people who cannot speak to receive a waiver that would enable them to become citizens.

But three years have passed and immigration officials haven't come up with any regulations to apply the 2000 law, said John Schewairy, a spokesman with the Bureau of Citizenship and Immigration Services.

So cases like Jeffrey's are processed until the point when most applicants would take an oath and become a citizen. Then, they're put on hold. A spokesman at the Charlotte Bureau of Citizenship and Immigration Services said Jeffrey's case is one of seven in the Charlotte office alone.

Fortunately, the Senior Senator from North Carolina heard about Jeffrey’s plight:
Now, Jeffrey's misfortune has prompted an inquiry by U.S. Sen. John Edwards, and officials at the Bureau of Citizenship and Immigration Services say they're taking action and that Jeffrey could be made a citizen within days…

In a letter sent Friday, Edwards urged Homeland Security Acting Director Edward Aguirre to implement the 2000 law.

"I understand that Jeffrey's is not an isolated case and that there are many individuals and families nationwide who have been waiting for over two years for these regulations to be issued so that they, too, may enjoy the rights and privileges of being United States citizens," Edwards wrote.

Thank you Senator Edwards. 
Sunday, July 06, 2003
  Blogging 24 for Cure Autism Now

On July 26th, I'll be participating in Blogathon2003 at my home site at Wampum, with all proceeds going to CAN. If you'd like to sponsor me, please check out the details here
Saturday, July 05, 2003
 
This and That

Here is an article arguing that the pasteurization process of milk transforms casein into a molecule that has involvement in the development of autism.

More anecdotal evidence of an increase in the incidence of autism in South Dakota, Wisconsin (thanks to TCMITS for the link) and Georgia (thanks to Jim C. for the link).

Chris Borthwick sends a link to a case study of Facilitated Communication. While I am far too cynical to put much faith in facilitated communication, I do not have a monopoly on wisdom. Decide for yourself.

This article reports on the views of Karen Slimak, an environmental toxicologist, who believes that “autistic symptoms are caused by the body's exposure and reaction to volatile organic compounds -- chemicals used in paints, chlorinated water and petroleum products, among other things.”

DM
 
 
Scientists Claim Evidence of a Link between MMR and Autism

Researchers Dr Vijendra Singh and Ryan Jensen, of the Utah State University, claim to have shown a direct link between the measles component of the MMR and autism. Their study will be published in the Journal Paediatric Neurology.

The IC Wales reports as follows:
The row over the safety of the controversial MMR vaccine intensified last night as new scientific evidence emerged of a direct link between the jab and autism.

US researchers say they can prove that a significant number of children suffered an abnormal response to the measles component of MMR, triggering autism…

The research, by Dr Vijendra Singh and Ryan Jensen, of the Utah State University, into samples from 52 autistic children who had been vaccinated with MMR, found that measles antibodies - a sign of an immune reaction to the measles virus - were significantly greater in this group than among the non-autistic children studied.
More than 80% of the autistic children had these antibodies compared with none of the 30 normal children and none of the 15 siblings involved in the research.

Singh and Jensen believe the presence of antibodies show that many autistic children have suffered an abnormal response to the measles element of the MMR vaccine, causing them to develop these "inappropriate" antibodies.

The findings, which are published in the Journal Paediatric Neurology, are the result of the pair's theory that as viruses are common trigger agents for auto-immune diseases, where the human body attacks itself, autism could involve a virus-induced auto-immune response, which in turn leads to autism.

Crucially, none of the autistic children involved had any history of measles rash or wild-type natural measles infection, which implies that the source of the measles antibody is the strain of measles virus used in the MMR vaccine.


I eagerly await the published study.

DM



 
Friday, July 04, 2003
 
Asperger's on 60 Minutes (AU)

This Sunday, July 6, 60 Minutes of Austraulia will air a segment on Asperger's Syndrome. If you miss the show, a transcript will be posted here on Monday, July 7.

Edited to correct my stupidity. Thanks Emily.

DM  
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