Why RDI?

I have not pursued any new autism therapies for a very long time. For years, I have resisted the newest therapies on the block because they did not seem like a good fit for Pamela or us. I do not want to put us through anything simply because it is a new thing under the sun.

Our consultant made up a very helpful web that illustrated the elements of what we do every day with Pamela: diet (true allergies and sensitivities that affect behavior), academic (three R's and some), and aphasia (specific language issue beyond autism). Our consultant plans to help us figure out two things: Pamela's passive nature which may be related to sensory under-responsitivity and developmental gaps in her dynamic relationship skills. I love this visual image of what we are doing from day to day.


Now, please do not take this the wrong way. I love my daughter! She is a joy and a dear! Our consultant enjoyed their time together: they had so much fun hanging out and doing crafts. Pamela is a wonderful person; we love her for who she is; we respect her for all the things she has done; we are amazed at her phenomenal memory.

But, we worry about her. She is 19 and we recently obtained guardianship because she is not able to live on her own at this point in time. We have no problem with her staying with us as long as she needs. She is a great companion. We hope that an RDI lifestyle can help us fill in some developmental gaps that will open more doors for her in the future. At present, she has memory skills that surpasses most people; she can do math and reading at a fifth-sixth grade level; she can write at about a second-third grade level; she can communicate her needs, but not everyone can understand her. Her relationship skills are at a toddler level. We would be negligent if we did not work together as a family to fill in those gaps! If she can relate to people better, then she will be even more of a joy to others. And, when we are not able to care for her, she will be welcomed by the younger generation of our family rather than put in some neglectful home (our church ministers to one in our town--it breaks my heart to know Pamela could end up in a place like that if we let her down).

So, why RDI? I am relying on my background in the Navy to illustrate this. Neurotypical children have a pattern of development. They may achieve different milestones at different times, but they tend to follow a similar course of development that is documented and can be outlined. RDI focuses on how children relate to people and how their abilities mature over the years. Whatever the cause, children with autism go a very different path of development. We can treat what we suspect may be related to the cause of autism. We can treat health and environmental issues that make life more difficult. Some kind of course correction is required to steer the child back to a development path that helps her learn to live in a dynamic, confusing, and ever changing world.

What I hope to achieve with RDI is to fill in some gaps. I hope that Pamela can learn to be more resilient in the face of change. I hope that she can learn to think about what is happening and react in dynamic ways based on her understanding rather than rote compliance. I hope that, when she wants friendship beyond her family, she will be able to reach out without being blindsided and rejected because she struggles to make herself understood and to understand others. I hope that, when her interests lead to friendships outside the home, she will be street smart enough and savvy to avoid those who might wish to harm her. As always, we focus on improving quality of life. Our joy and zest for life have increased since we started our RDI lifestyle.

A Tale of Two Doctors, or Why TV Does Not Cause Autism

Those who cannot remember the past are condemned to repeat it. ~ George Santayana

A gap in the treatment of disabled children worried a lone doctor in Vienna. Austrians rebuilding war-torn cities had no time for the retarded. The doctor lobbied local politicians. He opened the first clinic of its kind in Europe, and frustrated families flocked to it.

One day in 1954, the Austrian doctor glanced at two girls sitting in the waiting room. Both were washing their hands in dry air. He had seen repetitive movements before, but their actions caught his eye. Curious, he carefully examined them, compared their developmental history, and noticed a pattern.

The doctor uncovered six more patients like the girls at his clinic. He filmed them and scoured Europe for others fitting the profile. Twelve years later, he published his findings in a German medical journal that garnered no attention. His paper never even made it to the cutting room floor of the international press.

Another lone doctor traveled a parallel path in the city of Gothenburg. In 1960, he observed the same collection of unusual symptoms. He boxed up the records matching the pattern for safekeeping. His practice kept him busy, but the Swedish doctor intended to study the mystery some day.

Years passed. Both doctors in the two cities continued to document their girls and find new ones. Frustrated by the lack of interest in his research, the Austrian published a description of the disorder in English in 1977. It did nothing. More years passed.

Then a miracle happened. The two finally met at a conference in Canada. Imagine the joy of finding another professional with the same enthusiasm for these sweet girls. Inspired, the Swedish doctor collaborated with other on the first report of this syndrome published in English in a mainstream medical journal.

This report sparked interest in Rett Syndrome, named after the Austrian doctor. It took another quarter century to identify the primary gene that mutates and causes this syndrome. Now, they have a strain of female mice that show similar symptoms when this gene goes astray. They are well on their way to curing this developmental disorder.

What does the history of PKU and Rett Syndrome have to do with autism? Doctors once labeled these disorders as mental retardation. Seeing and investigating a pattern led to the prevention and treatment of PKU. Seeing another pattern revealed the gene and animal model for Rett Syndrome. Vast epidemiological studies did not produce these revelations. Large numbers cloak vital little patterns. By chipping away at unique profiles, researchers peeled back layers of retardation.

The lessons of the past imply that autism, like mental retardation, is a collection of syndromes. By sorting puzzle pieces by pattern, doctors might shorten the time needed to spot a new causation. Correlating the perceived increase in autism to one cause (television) is like assembling a jigsaw puzzle from a huge pile of pieces. Too many unrelated pieces blind the puzzle builder unless first sorted logically. The past tells us to conquer the puzzle by working in separate clusters.

Moral of the Story: Study the profile or your child. Try to identify therapies that seem most promising for an autistic child like yours.

Happily Ever After--For Some, or Why TV Does Not Cause Autism

Does television cause autism? If “yes”, watch this rerun!

Does correlation imply causation? If “yes”, watch this rerun!

Today’s episode of “Why Television Does Not Cause Autism” opens with a fable. . . Once in a rocky land of farms and snow, there lived a dentist named Harry. His wife Borgny cradled their darling girl named Liv. Her parents loved her and played with her, and nothing seemed amiss with their beautiful babe. Liv learned to walk in an odd fashion, but never started talking. Liv’s little brother Dag, born three years later, fared far worse: he seemed alert and normal for a few months, but never even learned to sit. He stayed infantile for the rest of his tragically short life.

One doctor after another diagnosed both children as hopelessly mentally retarded. Since all the fairy godmothers had gone into retirement, the faithful mother took them to a non-physician healer, an herbalist, and even a visionary, but her efforts came to nought. The parents had suspected the strong musky odor of their children’s urine to be a clue, but nobody had any ideas.

The parents persisted in their quest and, through some family connections, found a doctor wise in the ways of chemistry. He had no answers, but, as a consolation, offered to test their children’s urine. The kindly doctor ran routine tests that got routine results. Then something magical happened. In test for ketones, the urine turned dark green and faded away. The color startled him for it should have turned red-brown.

The doctor spent the next few months testing over twenty liters of urine and began to recognize the footprints left by the suspect. He tested people in institutions throughout the land, and some tested positive for these footprints. Doctors from far away tested the urine of other affected children, but less than two percent showed the trail left by the villain who had stolen their intelligence. Through analysis of family history, they found the thief had appeared in generation after generations of affected families.

Harry’s and Borgny’s children were never cured. Dag died at the age of six. Heartbroken, they never had another child. It took another twenty years for other dedicated families and doctors to develop a special diet and screening tests to prevent this one cause of mental retardation in very small minority of children. They died knowing that their efforts led to the screening of nearly all children worldwide to lock-up that particular villain and protect developing brains from harm.

The story you have just read is true. The names were not changed to recognize the heroes. On December 6, 1962, a ceremony was held at a special dinner in Washington, D.C. for the Joseph P. Kennedy Jr. Foundation. In a moment the results of that dinner . . .

The kindly doctor received a glass statue of the winged seraphim, Raphael, the angel of science, healing and love, for “opening a new era in the study of mental retardation with his discovery of the disease phenylketonuria, or PKU.”

Cast:
Harry, Borgny, Liv, Dag . . . The Egeland Family of Norway
The Kindly Doctor . . . Dr. Asjørn Følling
The Magical Test . . . Ketone Test
The Villain . . . Phenylketonuria
The Past . . . Untreated Cases of PKU

Contrast this fable, both fabulous and true, to a recent study by two Cornell business professors asking Does Television Cause Autism? Autism does not have a cause, but, like mental retardation, it has multiple causes. Finding one cause of many will most likely come from teamwork between parents, doctors, and dedicated people working together. Finding causes of autism will be like peeling away layers of an onion. Finding one cause will take years of research and experimental statistics, not broad epidemiological studies. Some forms of autism will eventually be discovered and given a new name. Some will be preventable or manageable, but others may never have an answer.

I conducted an informal, non-scientific poll of my email list, Aut-2B-Home, to find out how listmates could have helped those researchers:

• Some suspected satire because the study’s title seemed like a rerun of the refrigerator mother theory.
• Television may attract autistic children because of its very nature: highly visual and repetitive. Perhaps the question ought to be, “Does autism cause television addiction?”
• The study neglected other underlying factors: (1) parents of autistic children tend to be engineers, possibly the first to purchase VCRs, who live in areas on the cutting edge of technology and (2) many autistic children have asthma and allergies, which lessen in dry climates.
• Television might have enabled children, formally classified nonverbal retarded, to learn language, upgrading their diagnosis to autism.
• Some children showed no interest in television at an early age because of difficulties in shifting attention.
• A few parents have seen a connection between television and either seizures or extremely negative behaviors.

I close with a quote from one of my statistics books:

Statisticians are often stunned by the over-zealous use of some particular statistical tool or methodology on the part of an experimenter, and we offer the following caveat. Experimenters, when you are doing “statistics,” do not forget what you know about your subject-matter field! Statistical techniques are most effective when combined with appropriate subject-matter knowledge.

(Statistics for Experimenters, 1978: pg. 14-15).

Stay tuned for the next installment of Tammy Glaser's special coverage of the link between autism and television . . .

She Turned Me into a Newt, or Why TV Does Not Cause Autism

Lisa Jo Rudy was absolutely right to compare the logic of Monty Python and the Holy Grail to a recent study by two Cornell business professors asking Does Television Cause Autism? A judge named Bedevere and some villagers try to convince themselves a young woman is a witch because witches and wood float as do ducks. If she weighs as much as a duck, she must be made of wood, which proves she is indeed a comely hag. After rigging the scales, the witch and duck balance perfectly, and the villagers haul her away to the stake. Bedevere says to King Arthur, the smartest of the bunch, "Who are you who are so wise in the ways of science?"

Before getting to the study, let me make you wise in the ways of statistics (I have a master’s degree in that field). If two variables have a correlation, one does not necessarily cause the other. A professor at a small college in Pennsylvania requires his students to analyze statistics on life expectancy from The World Almanac and Book of Facts 1993. The variables in this table include life expectancy at birth, the number of television sets per person, and the number of physicians per person. When calculated correctly, the statistics correlate the number of television sets per person and life expectancy. Aha! TV deprivation may cause early death and, to solve this problem, the United Nations ought to ship televisions into these deprived nations. Right? Wrong! In this case, an underlying factor (poverty) is driving both variables (television and life expectancy) making them appear to be related.

The professors studied many variables related to climate and television viewing by using a Bureau of Labor Statistics’ American Time Use Time Survey: precipitation, hours of daylight, ethnicity, military service, income, education, etc. Did you notice anything missing from this list? That is right! The actual survey did not include autism. Statistical number crunching correlates precipitation and television viewing.

Buried in Table 2 of the study and left out of the most media coverage of this issue are the other factors found to be statistically significantly correlated (the ones with three stars ***): hours of daylight, bachelor’s degree, and employment. Why does television trump these other variables? People who live in rainy places or have less daylight watch more television. People who work or have bachelor’s degrees watch less television. Imagine how foolish the headlines would look: “Does darkness cause autism?” “Can employment prevent autism?” “Can college prevent autism?”

Stay tuned for the next installment of Tammy Glaser's special coverage of the link between autism and television . . .