Mercury Debate Hits JAMA - The Attack of the Bernards * The DanishRoll In a Response

Schafer Autism Report - January 16, 2004



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SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet" ________________________________________________________________

Friday, January 16, 2004 Vol. 8 No. 13

NOTE: New Updated-Yesterday Calendar of Events:

http://home.doitnow.com/~edit

PUBLIC HEALTH

* Mercury Debate Hits JAMA: The Attack of the Bernards

* The Danish Roll In a Response

RESEARCH

* Mitochondrial DNA Abnormalities & Autistic Spectrum Disord.

* Mutations of ARX are Associated With Striking Pleiotropy

And Consistent Genotype-Phenotype Correlation

TREATMENT

* Early Intervention Helps, Kids Need Treatment Before

Rituals Are Ingrained

* Room Is Ray Of Hope for Brain-Damaged Kids

CARE

* Special Care: Day Care For Special-Needs Kids Fill Void

in Ohio

LETTERS

* On Bright Minds and Dim Labels

* Don't Try This At Home

PUBLIC HEALTH

Mercury Debate Hits JAMA: The Attack of the Bernards "Association Between Thimerosal-Containing Vaccine and Autism"

To the Editor: In their article on the association between thimerosal-containing vaccines and autism, Dr Hviid and colleagues1 acknowledged their affiliations with Statens Serum Institut, Copenhagen, Denmark, but did not disclose that the institute is a for-profit, state-owned enterprise with roughly $120 million in annual revenue. According to its 2002 Annual Report,2 vaccines represent approximately one half of Statens Serum Institut's revenues and more than 80% of its profits. Furthermore, Statens Serum Institut manufactured the now discontinued monocomponent pertussis vaccine that contained thimerosal under investigation in their study. They were also the providers of diphtheria and tetanus components of a major thimerosal-containing diphtheria and tetanus toxoids and acellular pertussis vaccine (DTaP) vaccine sold in the United States.3

- Bernard Rimland, PhD Autism Research Institute San Diego, Calif

1. Hviid A, Stellfeld M, Wohlfahrt J, Melbye M. Association between thimerosal-containing vaccine and autism. JAMA. 2003;290:1763-1766. 2. Statens Serum Institut. 2002 Annual Report. Available at: http://www.ssi.dk/sw3767.asp. Accessed October 12, 2003. 3. Food and Drug Administration. Biologics license application approval letter to North American Vaccine. July 29, 1998. Available at: http://www.fda.gov/cber/approvltr/dtapnor072998L.htm. Accessed October 12, 2003. Letters Section Editor: Stephen J. Lurie, MD, PhD, Senior Editor. JAMA. 2004;291:180.

To the Editor: Dr Hviid and colleagues1 found no increase in relative risk of core autism from thimerosal in vaccines using the Danish autism registry. Denmark removed thimerosal from infant vaccines in mid-1992. The findings of Hviid et al are based on finding fewer older (born 1990-1992) thimerosal-exposed children than younger (born 1992-1996) unexposed children in the 2000 registry year. However, a sizable percentage of autism cases, skewing toward older children, are lost from the registry each year. Thus, the authors' finding is likely to be biased due to incomplete recordkeeping.

For instance, the 1995 registry2 contains 97 cases among 5- to 9-year-olds. This same cohort, as it grows older, becomes the 10- to 14-year-old cohort in the 2000 registry, where its number has decreased to 75 children, a decline of 22 cases or 23% of the original 1995 group. Hviid et al stated that virtually all cases in their autism group were accurately diagnosed, and thus it is unlikely that cases were removed due to subsequent discovery of misdiagnosis and reclassification. Autism is a lifelong disorder with near-normal lifespan,3 and few registry cases are in older age groups likely to die. Therefore, virtually any case entered into the registry should remain there. That some do not suggests administrative error.

I calculated the extent of record loss for the 1991-2000 span studied by Hviid et al. For each year, I added the number of newly enrolled cases for that year to the number of previous year's cases. I compared this total to the number of cases actually recorded in the registry for that year. For 4 of the years, the proportion lost amounts to one fourth of the cases. For the 2000 registry year, 23% of the cases from the previous year are missing. Cumulatively, 815 cases were dropped between 1991 and 2000, more than the total number remaining in 2000.

Removed cases accumulate each year, so for any given registry year, proportionately more removed cases fall into older age groups, because with each successive year, the removed cases get older. The effect is a bias toward more accurate counting of younger age cohorts while undercounting older ones. The relative risk and conclusions of Hviid et al are predicated on finding fewer cases in the older thimerosal cohort and more in the younger nonthimerosal groups. This is an untenable approach given the recordkeeping problem, and thus Hviid et al should either adjust their 2000 data for record loss or use an alternative methodology. -Sallie Bernard, BA Safe Minds (Sensible Action for Ending Mercury-Induced Neurological Disorders) Aspen, Colo

1. Hviid A, Stellfeld M, Wohlfahrt J, Melbye M. Association between thimerosal-containing vaccine and autism. JAMA. 2003;290:1763-1766. ABSTRACT/FULL TEXT 2. Danish Institute for Computer-Assisted Reporting. Registry Data Set. Compiled 2003. Available at: http://www.safeminds.org/sfpub/sfpub.html.

Accessed October 10, 2003.

3. Gillberg C, Coleman M. Adults with autism. In: Gillberg C, Coleman M. The Biology of the Autistic Syndromes. 3rd ed. London, England: Mac Keith Press; 2000:73-78. Letters Section Editor: Stephen J. Lurie, MD, PhD, Senior Editor. JAMA. 2004;291:180.

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* *

The Danish Roll In a Response

Association Between Thimerosal-Containing Vaccine and Autism—Reply In Reply: In response to Dr Rimland, the Statens Serum Institut is the national center for prevention and control of infectious diseases in Denmark. It is a nonprofit state enterprise under the auspices of the Danish Ministry of Health and Interiors. Thus, any profit belongs to the state. This governmental research institute in many ways resembles the Centers for Disease Control and Prevention in the United States. With regard to vaccines, the institute has a law-regulated obligation to ensure the national supply of vaccines used in the Danish childhood vaccination program. To fulfill this obligation, the institute produces some vaccines and buys other vaccines from third parties. For many years (since 1992), it has been the institute's strategy to develop and use vaccines without preservatives.

In response to Ms Bernard, we do not agree that autism cases are lost retrospectively from the Danish Psychiatric Central Register.1 This registry is a nationwide passive administrative registry, recording all contacts to psychiatric departments and has been used extensively for psychiatric epidemiological research in Denmark. We contacted the Danish Psychiatric Central Register to verify the nature of the data obtained by Ms Bernard. The Danish Psychiatric Central Register verified that these data do not represent prevalences of autism but are simply the numbers of cases with a contact to a psychiatric department in a given year. However, not all cases in the population are seen in a psychiatric department every year. Nevertheless, those without any follow-up contact with psychiatric departments after diagnosis can also be identified in the register. We used such data in our prospective follow-up study. Contrary to Bernard's claims, all individuals who were diagnosed with autism were included in our analysis.

- Anders Hviid, MSc; Mads Melbye, MD, PhD, Department of Epidemiology Research Statens Serum Institut Copenhagen, Denmark

1. Munk-Jorgensen P, Mortensen PB. The Danish Psychiatric Central Register. Dan Med Bull. 1997;44:82-84. ISI | MEDLINE Letters Section Editor: Stephen J. Lurie, MD, PhD, Senior Editor. JAMA. 2004;291:180-181.

* * *

RESEARCH

Mitochondrial DNA Abnormalities And Autistic Spectrum Disorders.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui

ds=14722523&dopt=Abstract

Pons R, Andreu AL, Checcarelli N, Vila MR, Engelstad K, Sue CM, Shungu D, Haggerty R, De Vivo DC, Dimauro S. Departments of Neurology, Pediatrics, and Psychiatry, Columbia University College of Physicians and Surgeons, New York, New York, USA.

OBJECTIVES: To further characterize mtDNA defects associated with autistic features, especially the A3243G mtDNA mutation and mtDNA depletion.

Study design Five patients with autistic spectrum disorders and family histories of mitochondrial DNA diseases were studied. We performed mtDNA analysis in all patients and magnetic resonance spectroscopy in three.

RESULTS: Three patients manifested isolated autistic spectrum features and two had additional neurologic symptoms. Two patients harbored the A3243G mutation. In two others, the A3243G mutation was not found in accessible tissues but was present in tissues from their mothers. The fifth patient had 72% mtDNA depletion in skeletal muscle.

CONCLUSIONS: Autistic spectrum disorders with or without additional neurologic features can be early presentations of the A3243G mtDNA mutation and can be a prominent clinical manifestation of mtDNA depletion. Mitochondrial dysfunction should be considered in patients who have autistic features and associated neurologic findings or who have evidence of maternal inheritance.

PMID: 14722523 [PubMed - in process]

* * *

Mutations of ARX are Associated With Striking Pleiotropy And Consistent Genotype-Phenotype Correlation.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui

ds=14722918&dopt=Abstract

Kato M, Das S, Petras K, Kitamura K, Morohashi K, Abuelo DN, Barr M, Bonneau D, Brady AF, Carpenter NJ, Cipero KL, Frisone F, Fukuda T, Guerrini R, Iida E, Itoh M, Lewanda AF, Nanba Y, Oka A, Proud VK, Saugier-Veber P, Schelley SL, Selicorni A, Shaner R, Silengo M, Stewart F, Sugiyama N, Toyama J, Toutain A, Vargas AL, Yanazawa M, Zackai EH, Dobyns WB. Department of Human Genetics, The University of Chicago, Chicago, Illinois.

We recently identified mutations of ARX in nine genotypic males with X-linked lissencephaly with abnormal genitalia (XLAG), and in several female relatives with isolated agenesis of the corpus callosum (ACC).

We now report 13 novel and two recurrent mutations of ARX, and one nucleotide change of uncertain significance in 20 genotypic males from 16 families.

Most had XLAG, but two had hydranencephaly and abnormal genitalia, and three males from one family had Proud syndrome or ACC with abnormal genitalia.

We obtained detailed clinical information on all 29 affected males, including the nine previously reported subjects.

Premature termination mutations consisting of large deletions, frameshifts, nonsense mutations, and splice site mutations in exons 1 to 4 caused XLAG or hydranencephaly with abnormal genitalia.

Nonconservative missense mutations within the homeobox caused less severe XLAG, while conservative substitution in the homeodomain caused Proud syndrome.

A nonconservative missense mutation near the C-terminal aristaless domain caused unusually severe XLAG with microcephaly and mild cerebellar hypoplasia.

In addition, several less severe phenotypes without malformations have been reported, including mental retardation with cryptogenic infantile spasms (West syndrome), other seizure types, dystonia or autism, and nonsyndromic mental retardation.

The ARX mutations associated with these phenotypes have included polyalanine expansions or duplications, missense mutations, and one deletion of exon 5.

Together, the group of phenotypes associated with ARX mutations demonstrates remarkable pleiotropy, but also comprises a nearly continuous series of developmental disorders that begins with hydranencephaly, lissencephaly, and agenesis of the corpus callosum, and ends with a series of overlapping syndromes with apparently normal brain structure.

PMID: 14722918 [PubMed - in process]

* * *

TREATMENT

Early Intervention Helps Kids Need Treatment Before Rituals Are Ingrained

[USA Today.] http://www.psycport.com/showArticle.cfm?xmlFile=usatoday%5F2004%5F01%5F15%5F

eng%2Dusatoday%5Flife%5Feng%2Dusatoday%5Flife%5F051714%5F7187254329625729656

%2Exml&provider=USA%20TODAY <- - address ends here.

At age 8, Elyse Monti of East Greenwich, R.I., was staying up half the night to do homework.

It's not that her teachers were piling it on. It's that in Elyse's mind, it had to be perfect.

"All my obsessions were on school," she says. "Am I doing this right? I'd spend hours on homework. If I couldn't get a math problem, I'd start crying." Elyse has obsessive-compulsive disorder, OCD, an anxiety disorder that affects about 1% of children and about 2.3% of adults. OCD causes intrusive, repetitive, often fearful thoughts, such as an excessive dread of germs. These fears result in compulsive behaviors, such as the need to constantly wash hands or the inability to eat in restaurants.

About a third of adults with the disorder say their symptoms began in childhood, but effective treatments for children are not widely known, and therapists familiar with OCD in children are rare.

In Elyse's case, her father was alert to the symptoms because he has OCD himself. Her parents took her to a doctor for evaluation, and she began weekly therapy.

Her symptoms abated but recur with major life changes. Upon entering high school, "I felt I had so much work to do, I didn't take time to eat. I was out of control," says Elyse, 17. "I couldn't do my homework; I was obsessing. It just keeps going round and round in circles. I just felt this unbelievable high level of anxiety." Her worried parents sought help, and Elyse was hospitalized in the adolescent unit at Bradley Hospital in East Providence for three weeks. To explain her absence from school, she told her friends she had mononucleosis. "You get really good at hiding it," she says. "People with OCD don't want to show it." Bradley is one of a handful of hospitals at the forefront of researching OCD in children. Child psychiatrist Henrietta Leonard and psychologist Jennifer Freeman, co-directors of the Pediatric Anxiety Research Clinic at Bradley/Hasbro Research Center in Providence, are leading studies on how to treat OCD in young children.

"Children aren't just little adults, and kids with OCD aren't just treated with adult protocols," Leonard says. "You can't just substitute words and think the treatment is going to work." The researchers have developed a form of cognitive behavioral therapy, CBT, that is being used successfully to help children as young as 5.

The family is "the critical component of the treatment," Leonard says, so "essentially we teach the family to deliver the CBT treatment." Young patients are encouraged, gently and over time, to confront whatever it is that they fear.

A child may have washed her hands 30 times in a day but be terrified of leaving the house without washing them once more. In that case, a parent might remind the child of another time when she didn't wash her hands and nothing bad happened, and suggest waiting a few minutes for the fear to pass away.

Often, medications can help. A recent study by researchers at Duke University found that a combination of behavioral therapy and anxiety-reducing drugs is more effective than either approach on its own, says pediatrician Susan Swedo of the National Institute of Mental Health. The medications "allow the child to do internal behavioral therapy and provide stress relief." But treatment can't begin unless there is a diagnosis. About 15% of children with OCD have a relative who also has it, but "most of it comes out of the blue," Swedo says, and parents may not recognize it.

Early diagnosis is important because therapy is more effective before rituals and obsessions become entrenched, and "there's also a demoralization that comes with having symptoms for a long time." People with OCD know "what they're experiencing doesn't make any sense," she says. "They are frightened and try to hide it as long as possible. People may spend six or seven hours a day on their rituals, and nobody knows." Elyse was given help at an early age, but she kept her condition a secret until her sophomore year of high school, when she was assigned to write a personal essay and read it aloud in English class.

"I thought this would be a good time to come out about my OCD," Elyse says. The responses from friends "were all so positive. People said: 'If there's anything I can do,' or 'You were strong to come out about it.' " Buoyed by that support, Elyse has become an advocate for awareness of OCD in teens and children and is active in the Obsessive-Compulsive Foundation, a national research and support group.

Meanwhile, she's busy at school, where she's an A-student, vice president of the student council and secretary of the student government. She also plays field hockey and runs track. She's looking forward to college next fall.

Her OCD is "not completely gone. It's never gone," she says. "It's cyclical. There's always an event that triggers it. Last year, it was the SATs. That was like the only thing I could think about." Her medication was adjusted for a week, "then the SATs were over, and I was fine. But I know there are still bumps in the road."

* * *

Room Is Ray Of Hope for Brain-Damaged Kids

Adopting a therapy that originated in the Netherlands, Jackson Memorial Hospital unveils a new multisensory room to treat children with brain injuries.

[By Elinor J. Brecher for the Miami Herald. This news clipping is presented here for our readers' information only and does not constitute a treatment endorsement.] http://www.miami.com/mld/miamiherald/2004/01/15/news/local/7714692.htm

On Dec. 5, Angel Pennywell was driving her two young sons to Earlington Heights Elementary School in Miami when a heavy work truck slammed into her 1988 Chevy Blazer and flipped it sideways.

Tavarious Williams, 9, was in the front seat. Terious Williams, 7, was in the back. As their mother bolted from the wreck screaming for help, she thought her sons would die.

On Sunday, Tavarious -- conscious but barely responsive -- became Jackson Memorial Rehabilitation Center's first in-patient to test an exotically equipped room that rehabilitation professionals hope will hasten the recoveries of brain-injured children and eliminate the need for some of their medication.

The Snoezelen (pronounced snooze-a-lun, a contraction of the Dutch words for "snoozing" and "sniffing") room is part physical-therapy studio and part kiddie carnival, with a soft white floor and ceiling, mood lighting and New Age music.

The Snoezelen philosophy, developed in the Netherlands in the 1970s, says that surroundings can have a profound effect on behavior: calming the agitated and stimulating the passive.

Thousands of Rooms

There are thousands of such rooms all over the world, including 1,000 in England and 140 in Israel. Ten of more than 300 in the United States are in Florida, according to Carrie Aspan, an account representative with Flaghouse, a New Jersey-based firm licensed to sell Snoezelen equipment in the Americas.

Reports in professional medical journals and a large body of anecdotal information indicate that many adults suffering dementia, children with autism and people of all ages with developmental disorders respond well to the room and its techniques. In some cases, stress levels drop dramatically; in others, nonresponsive patients begin to communicate.

It also is used for patients with chronic pain.

But little research has been done with the kinds of children -- those with brain injuries -- who will use the room at Jackson.

According to Dr. Glen R. Finney, a behavioral neurology fellow at the University of Florida, research shows that in dementia patients, "there seems to be a benefit to their behavior while [multisensory stimulation] treatment is ongoing. . . . Whether it would have long-lasting effects . . . we don't know. But any stimulus will improve chances of recovery. This encourages the brain to try to heal itself." A Department of Children & Families facility called Community of Landmark in Carol City operates the only Snoezelen room in South Florida for developmentally disabled adults.

The center's administrator, Michael Mayfield, said it started around 1995 "and we've assembled it piece by piece. The equipment is very expensive." He estimated the cost at nearly $100,000.

Pioneering Program

Jackson is using the technology differently, modeling it after a pioneering program in Israel that uses Snoezelen techniques with very young, neurologically damaged children.

A yearlong research study led by Hotz for the medical school's departments of surgery and pediatrics, using up to 20 children should, among other things, show whether patients who use the room can eliminate certain medications, said Gillian Hotz, University of Miami School of Medicine neuro-trauma researcher.

"There's no hard-core data that this works instead of giving a kid Ritalin," Hotz said. "It's perfect because [South Florida] is No. 1 in the country for kids with brain injuries." Ten doctors, nurses and therapists recently trained with two therapists from Beit Issie Shapiro, an Israeli social services center that uses Snoezelen techniques with autistic children and others with sensory disturbances.

The Jackson room is due to open next month, Hotz said. By then, it will look like "the inside of a marshmallow," with a light-hued padded floor and a ceiling tented in iridescent gauze.

Even in its unfinished state, the room's impact on Tavarious was obvious. Strapped into a wheelchair, he was stiff and vacant, his head lolling helplessly to one side. His breathing sounded like a person with a bad cold snoring, and his hands were clenched tightly into half-fists.

(His brother Terious, who also suffered head trauma, was less-severely injured and should be discharged in a few days, according to Hotz.) Tavarious entered the darkened room in a chair pushed by his mother. They parted a curtain of fiber-optic cables. Lights in the cables changed color in a rainbow sequence.

Bubbling Water

First stop: a five-foot plexiglass column filled with bubbling water atop a gently vibrating padded platform.

Base lights change the water's color every few seconds. The kind of instrumental music that might accompany a soothing spa massage played in the background.

In one corner, a pit filled with soft, clear-plastic balls looked like a hot-tub bubble bath lit from beneath. A contoured "leaf" chair swung suspended from the ceiling.

A mirrored "disco ball" cast bits of reflected light against the walls.

Therapist Michele Shapiro and colleague Mona Julius positioned Tavarious atop the platform so that he could see the water column and, beyond that, his own reflection in a mirror. Julius lightly massaged his hands, Shapiro his feet.

Within minutes, Tavarious stopped rasping. His breathing grew calm and quiet. Slowly, Julius was able to draw down his right arm, which he holds rigid in an L-shape.

The fingers on his left hand, clamped around a toy motorcycle, also began to relax. "His whole heart-rate probably came way down," Hotz said.

Moved to the leaf chair, Tavarious appeared to track the lights in a bunch of fiber-optic cables that Julius slowly stroked across his legs.

"I saw he was more relaxed," the boy's mother said. "His eyes were more alert. He was trying to move and reach out." Todd Torchin, a 4-year-old who nearly drowned two years ago, also tried out the room. The tow-headed Coral Springs boy had been a Jackson patient but now gets outpatient therapy.

Todd seemed fascinated by the water column, grinning in open-mouthed delight at the fast-rising bubbles.

The bubble pit also appeared to please him. As Julius lightly rubbed his arm with a plastic ball, Todd laughed.

"He was communicating with you," physical therapist Isabel Rodriguez told Shapiro.

Shapiro described a child she worked with as "a block of wood" before Snoezelen.

After working with the child in the room for several days, "he looked at me and smiled," Shapiro recalled. "This is quality of life!"

_______________________________________________________

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* * *

CARE

Special Care: Day Care For Special-Needs Kids Fill Void in Ohio

[Dayton Daily News.] http://infobrix.yellowbrix.com/pages/infobrix/Story.nsp?story_id=45873635

Karen Hathaway struggled to find day care for her 2-year-old daughter, Anna, who is developmentally delayed and has seizures. The Kettering woman found many providers unable to handle the additional stress and attention needed to care for a child with her special needs.

"I went through like six providers in two years," she said.

Hathaway began using home child-care providers, but they, too, were unable to continue their care, which created a challenge for the working single mother.

Hathaway's search ended when she found All Kids Child Development Center in Dayton, which Goodwill Industries/Easter Seals West Central Ohio opened 17 months ago at 25 Thorpe Drive.

"This center has been a godsend to me," said Hathaway, whose typically developing son, Lucas, 3, also attends preschool there in its inclusion program. "This allows (Anna) to get her needs met, my son gets his needs met and me, I get my needs met. It's the best of all worlds."

The Ohio Department of Job and Family Services licenses more than 3,500 child-care centers, which care for more than 215,000 children each day. Spokeswoman Carmen Stewart said the department does not track how many centers provide services to children with special needs.

Parents of these children may have a tough time finding appropriate child care because some day-care centers are not equipped to handle special needs such as a visual or physical impairment. Others might not have enough trained staff members to devote the attention required, including on-hand nurses who administer medication or therapists who create a plan to help a child grow toward independence. In July, United Rehabilitati on Services of Greater Dayton, 4710 Old Troy Pike, opened a room for infants with disabilities or delays. After many years of providing child care to older special-needs children, URS saw a growing need for service for those 6 weeks and older.

"What we're seeing now is a lot of premature babies," said Cissy Seibel, development director at URS, which serves 11 counties.

Four sets of twins are among the 64 children in the day-care program, she said, noting that multiple birth children can be at- risk for development delays or disabilities.

All Kids' director Kelly Walker said her day-care center, which cares for 52 children, also is seeing parents of premature babies and twins.

Both day-care centers are licensed through the state and offer private pay or government assistance options based on parents' ability to pay.

All Kids, which serves children 6 weeks to school age, leases space from the Montgomery County Board of Mental Retardation and Developmental Disabilities, which owns the building, offering other services including therapy, counseling and health-care clinics to keep parents from running to different places.

"There were limited opportunities in the county for children who had disabilities in regard to day care," said Herb Schwendeman, administrator of early intervention programs for MR/DD. The more severe the impairment, the fewer the options, he said.

"It's very fortunate we've been able to come together and do this," Goodwill President Amy Luttrell said.

Nurses and occupational, speech and physical therapists are available to work with the children, whose disabilities range from autism to cerebral palsy.

Not all of the children who attend the day-care centers are born with their disabilities. Some may go there after head trauma in a car accident, or other illnesses that change lives in an instant. Deirdre Thomas didn't know where to turn after her healthy 20-month- old son, Marcus Rucker, went to bed last Jan. 30 and awoke with a high temperature, seizures and gasping for air. Paramedics rushed the toddler to Children's Medical Center. Doctors discovered he was having seizures and later diagnosed a neurological disorder whose onset is sudden.

So was Thomas' turmoil.

Her son, who had been able to say simple words like "Mama," was hospitalized for three weeks and "came out not walking, talking or seeing," said Thomas, a single mother who works as a mail carrier.

She withdrew him from his day-care program because she said it was not equipped to handle a disabled toddler, and in March placed him in URS' day-care program. When youth services manager Deborah Santiago first met Marcus six weeks after his hospital release, he lay in her arms like a 3-month-old baby.

"This was a child who the night before when they put him to bed could climb out of a crib," she said. "He was a very agile, active little boy."

In the past 10 months, URS therapists have worked with Marcus on such things as motor skills and functional communication to express wants and needs such as hunger or pain. Marcus, who will be 3 in May, learned how to walk last summer. He appears to be regaining some sight because he can pick up cups from the floor, his mother said.

Within the past month he began saying "Mama," his first word.

"We are hoping he can get back to where he used to be," said his mother, who finds the developments encouraging. She attributes all of his improvement to the work going on at URS and Northview School, an MR/DD program he attends daily for a few hours.

The encouraging developments have ended the turmoil she felt nearly a year ago, and given her peace of mind when she spends six hours walking her mail route.

"It makes you feel comfortable enough to work a job and provide for your family," she said.

* * *

LETTERS

On Bright Minds and Dim Labels

The comments on Asperger's v. "real" autism are right on the mark. I'm tired of having people tell me, in response to learning that my twins are autistic, that "someone who works in their office" is "autistic." Puh-leeze. People need to understand the difference. The media always gravitates toward Asperger's, I think because it is more interesting and less depressing.

- Doug Garrou

As a mom of a teen with Asperger Syndrome (AS), I'm in agreement about people like Fitzgerald who would trivialize autism, but from a different standpoint. I find that many parents, especially with newly diagnosed children, really hang onto these "expert" opinions and books. In the long run, the books can be more damaging than helpful. Our teen-ager's experience has been very stressful, from dealing with the school's inability to "get it", to the difficulty finding adequate professional medical assistance. In the schools, they don't understand the behavioral underpinnings of AS and prefer to just punish. Wonder how many of our AS kids now inhabit SBH classrooms, receiving the worst behavior management? I often feel that my son is like an island; he just doesn't fit anywhere. But he "looks" normal and for that he is suffering. Heck, he is confused on who he is.

Do I want the separation of AS from autism? All I know is that using the word "autism" may be the only thing that jars people's close-mindedness on the needs of our AS kids. Am I "using" the label, that could be argued, I suppose. However, I recognize the overwhelming needs of autistic children on the spectrum. All of this only underscores the need for more thorough education of our medical community, the schools and general population on every aspect of neurobiological disorders.

- Carol M. Apple Norton, OH

My 10-year-old has AS, resulting from birth trauma, I believe. My 2-year-old is autistic, resulting from immunizations, I also believe. While they share some characteristics, they are like night and day. My older son at two was nothing like my 2-year-old now, NOTHING. The two conditions are just different and the differences, I feel, outweigh the similarities by a wide margin. Treating these two conditions in the same way does a great disservice to our children. The needs of my two sons are so profoundly different. I couldn't agree more about taking AS off the spectrum.

- Jenny Losey

Editor's Response: However, it is also true that no matter where they are on the autism spectrum, these kids are like snowflakes, no two alike. -LS

G'day, Wasn't Einstein unable to speak till he was four and a half? Didn't he have deficits in his social skills, (high school dropout, didn't know whether to marry his second wife or her daughter)? Did he have a lack of insight, (how the people of his time reacted to his theories)? Wasn't he a very visual thinker (on a train traveling near the speed of light, and turn on a flashlight etc.)? Weren't there extra axons / dendrites in the rear left part of his brain (visual spatial region), some overdevelopment in that area in early childhood?

I'd say Einstein recovered from his autism, but still had an ASD accent for life.

Newton's social skills were such that he never had a lover in his life.

I may be wrong of course, I am not a historian, maybe what I think I know, is Urban Myth.

-Richard, Cairns Australia

Editor's response: If anything, Einstein and Newton were Asperger's and not with classical autism. With regards to the theory of relativity, it was Einstein who pointed out that if you could run at speeds that approached the speed of light, your legs would get tired awfully darn fast. But maybe that's just Urban Myth, too. -LS

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Don't Try This At Home

Just a word of caution re: reports on medication. I had several parents contact me regarding the concerns of bad side effects with the drugs Neurontin and Paxil in the autism report. The information and references are helpful and while the information may be accurate, some parents do not know how to synthesize the medical information. Hence, parents have or may stop treatment because of what they have read thinking that these medications are harmful. This in fact can be very harmful to the patient creating even worse consequences.

This is not unique to the autism population. In my own personal practice, I can cite examples of many adult patients stopping their medications because of what they heard on TV or read in magazine; however, an appropriate disclaimer referring the patient to consult with their medical provider prior to discontinuing or adjusting their medication would be in order to prevent any problems.

-Deborah Achey RN, MSN

Editor's response: Your point is well taken. We do frequently warn readers that the material we present here are news clippings and is for their information only and not meant to be taken as medical advice. The problem is that just about everything having to do with autism is controversial and would deserve such disclaimers and warnings. Repetitious warnings can lose their effect from monotony so we space them out. Just recently, we ran an item about some psychiatrists who would opt first for brain surgery for certain mental disorders. We did warn our readers not to try this at home. It is possible to underestimate the savvy of parents.

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Lenny Schafer, Editor mailto:edit@doitnow.com

Edward Decelie Debbie Hosseini Richard Miles Ron Sleith Kay Stammers

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