E-News June 2006

Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for June 2006 - #1. As always, email your thoughts and/or questions. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

If this email is NEW to you and you don't recognize the name... WELCOME! These emails happen two to four times a month for the Southern California autism support group called TACA. As always, contact us with your thoughts and/or questions. I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to Autism. Our main goal is to build our community so we can connect, share and support each other.

In This Month's Edition of TACA e-news:

1.
Upcoming TACA Costa Mesa schedule & other TACA meeting schedule info
2.
General News:
  A) Time Magazine’s excellent cover story on Autism – May 15, 2006
  B) Pediatricians Fail to Screen for Autism, Johns Hopkins Study Finds; Most Know Too Little About the Screening Tools
  C) Siblings Coping With Autism
  D) The Cost of Autism
  E) Special diets surpass drugs in autism treatment success
  F) Adults with autism find services lacking
3.
Vaccine News
  A) Dateline: The unorthodox practice of chelation
  B) Study finds MMR Linked with Autism
  C) Dan Olmsted – Age of Autism – new additions
  D) New Research on Autism Points to a Novel 'Gut' Disease in Some Kids
1) Gastrointestinal comorbidity, autistic regression and Measles-containing vaccines: positive re-challenge and biological gradient
  E) Vaccinations: friend or foe?
4.
Upcoming TACA Activities
5.
A Fallen Angel
6.
Vendor Announcements
7.
Books & Web Sites
8.
Fun Activities
9.
Conferences
10.
Personal Note

1 Upcoming TACA Costa Mesa Meeting Schedule:
   
July 8, 2006:

Autism One Conference Review

  Time: 1pm - 4pm
Location: Vineyard Newport Church
Costs: FREE
RSVP Required: NO – just come on down!
July 17, 2006:

Special Evening Event - Author Stephen Shore:

 

Life on and Slightly to the Right of the Autism Spectrum:
Looking at Promoting Success


Join Stephen Shore in his journey from the nonverbal days and recommendations for institutionalization to the finishing stages of his doctoral dissertation on comparative approaches for helping children with autism lead fulfilling and productive lives.  Explanations and practical solutions for addressing sensory issues, meaningful education, as well as challenges faced by adults such as self-advocacy and disclosure, employment, interdependent living and relationships shall be explored.  Participants will gain insights on how to promote success for people with autism by using their strengths -- just like everyone else.  The presentation ends with an interactive experience giving a sense of some of the struggles people with autism face.

Speaker Biography: Diagnosed with "Atypical Development with strong autistic tendencies," Stephen Shore was viewed as "too sick" to be treated on an outpatient basis and recommended for institutionalization.  Nonverbal until four, and with much help from his parents, teachers, and others, Stephen Shore is now completing his doctoral degree in special education at Boston University with a focus on helping people on the autism spectrum develop their capacities to the fullest extent possible.

In addition to working with children and talking about life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, and the forthcoming Understanding Autism for Dummies.

A board member of the Autism Society of America and president emeritus of the Asperger’s Association of New England, Stephen serves on the Board of Directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP, and the College Internship Program.

Time: 7 pm – 9 pm
Location: Vineyard Newport Church
Costs: FREE
RSVP Required: NO – just come on down!
August 12, 2006:

Speaker being confirmed


All Meetings at The Vineyard: 102 E. Baker, Costa Mesa, CA [click here to find a meeting]

(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.) And remember, we are still a non-faith based group!

Directions:
405 FWY South, Exit Bristol
Right on Bristol
Left on Baker
Go under FREEWAY.
The Vineyard Church is on the corner just after the freeway - turn left onto the freeway access road,
make FIRST right into the Vineyard's parking lot.

 

  TACA Has 7 California Meeting Locations:
   
Costa Mesa:
West Hills:
  • Meets: Typically meets the 1st Sunday of each month
  • Time: 7:00pm-9:00pm
  • Location: Jumping Genius – 22750 Roscoe Blvd West Hills, CA
    (the corner of Roscoe Blvd & Fallbrook Ave)
  • Info: Please contact Moira Giammetteo
San Diego:
  • Meets: 4th Tuesday evening
  • Time: 6:30- 8:00 p.m.
  • Info: Becky Estepp
  • Location: NEW LOCATION AS OF April 2005:
    Rancho Bernardo Community Presbyterian Church
    17010 Pomerado Road, San Diego, CA 92128 - Rooms 22 A&B
    • June 27--Jaime Pineda, Ph.D. - "New Data On Neurofeedback And Autism"
    • July 25--Laura Sylvester "Managing Your ASD Child's Records" and “The Autism One Conference--an update from TACA members who attended"
    • Aug--No meeting
    • September 26 --Dr. Kurt Woeller "Supplements--What are they? What they do and how they can help your ASD child---A DAN doctor's perspective”
    • October 24, 2006 Starting the biomedical journey Presented by: Lisa Ackerman
      Biomedical treatments for autism spectrum disorders can be a confusing addition to traditional therapies. This seminar will cover:
        • Why you should consider biomedical treatments
        • How to start
        • What to look for
        • What is available as an option
        • How are these treatments paid for

        This seminar will be presented by a parent – not a doctor – in hopes of providing some suggestions and insight for other parents with children on the spectrum.

Corona:
  • Meets: 3rd Saturday
  • Time: 1:30–4:30 p.m.
  • For more information, please contact NEW CONTACT TAMI DUNCAN

    Please note: TACA Corona has a NEW LOCATION as of January 2006. Meeting Location:  Peppermint Ridge - 825 Magnolia Avenue, Corona CA  92879

    • June  17, 2006 - Erica Roest from Autism Behavioral Consultants
       "How to Incorporate Social Skills and Peers into your ABA Program"
    • July 15, 2006 - Gene Hurwin - Big Fun Therapy
       "Sensory Processing, and the therapeutic benefits of movement for a child that has autism"
    • August 19, 2006 - Greg Nicholson
      "The Lanterman Act and what we need to know about getting services from the Regional Center"
Torrance:
  • Meets: 3rd Monday of each month
  • Location: Whole Foods Market - 2655 Pacific Coast Hiway - Torrance (@ the Rolling Hills Shopping Center)
  • Time: 6:30 - 9:00 p.m.
  • Information: Please contact Beth Mulholland
  • Childcare: This is not offered at this time, sorry.
    • Monday, June 19, 2006 @ 6:30 pm
      Faith Mitchell MA, MFT and Dr. Larry Shaw www.drlarryshaw.com. will present-
      TECHNIQUES TO HELP SOOTHE YOUR CHILD
      You will learn: Cutting edge discoveries on mirror neurons.  Why it matters in relation to your child in everyday life. How our brains and nervous systems interact between caregiver, (parents & therapists), and your child.  Why this matters! How Compassion fatigue can affect your child’s therapist and therefore your child.  How to recognize this. Techniques that will help your child self-soothe during stressful times. Live Demonstrations:  settling and calming a child before the tantrum begins (reading the cues).
    • July 17, 2006 – Speaker to be announced
Visalia:
  • Meets: 3rd Wednesday of month
  • Time: 6 p.m. "Happy Hour" with GFCF snacks and coffee 6:30-8:30 p.m. Speaker
  • Location: (Tulare County) Kaweah Delta Multi-Service Center Auditorium,
    402 W. Acequia, Visalia
  • Information: Please contact Lynne Arnold
  • Childcare: This is not offered at this time, sorry.
    • June 21 - Carline Banks, Low-Oxalate Diet
    • July 19 - Tim Adams, Esq., of Roberts & Adams, Special Education Attorney
Santa Rosa:
  • Meets: 2nd Tuesday of each month
  • Location: Swain Center - 795 Farmers Lane, Suite 27
    Santa Rosa, CA
  • Time: 7:00 - 8:30 p.m.
  • For more info: Cathy Ference
  • Childcare: This is not offered at this time, sorry.
    • June 13, 2006 – Parent Chat – an open forum of discussion & support
 

  TACA Calendar Quick View
JUNE 2006
Sunday
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
        1

2

3
Preparing for Transition
Into a Preschool Program or A Kindergarten Class

4
West Hills Meeting

5

6
7

8

9
RDI: Going to the Heart of Autism 2-Day Workshop
10
Costa Mesa Meeting:
Autistic-Spectrum Disorders & Medical Treatments
11

12

13
Santa Rosa Meeting
: Parent Chat – an open forum
14
An Introduction to Biomedical Treatments for Autism

-------------
Prescription for School Success With Dr. Geeta Grover

15

16

17
Corona Meeting: Greg Nicholson
18

19
Torrance Meeting
-------------
CSU Fullerton with OC Office of Ed Learning Disabilities Assoc of CA, Presents 1st Annual Special Education Collaborative

20
CSU Fullerton with OC Office of Ed Learning Disabilities Assoc of CA, Presents 1st Annual Special Education Collaborative

21
Visalia Meeting: Carline Banks, Low-Oxalate Diet

22

23

24
Anaheim Hills Speech & Language Center hosting a free IEP “Tips and Strategies” seminar
25

26

27
San Diego Meeting: New Data On Neuro feedback & Autism
28
Monthly Pump It Up nights in Huntington Beach

29

30

31

JULY 2006
Sunday
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
1
2
West Hills Meeting

3

4

5

6

7

8
Costa Mesa Meeting:
Autism One Conference Review
9

10

11
Santa Rosa Meeting

12
Foothill Autism Presents Recreational Opportunities for Children with Special Needs
13
14

15
Corona Meeting:
Gene Hurwin - Big Fun Therapy

16

17
Torrance Meeting
-------------
Special Evening Event - Author Stephen Shore
18

19
Visalia Meeting:
Tim Adams

20
4 day, interactive workshop for educators and clinicians on
best practices in educating children and adolescents
with Asperger's Disorder

21

22
23 24 25
San Diego Meeting
:
Laura Sylvester and “The Autism One Conference
26
27
2 day Future Horizons Autism and Asperger's Syndrome Conference -
San Diego

28 29
30            

2 General News

2. Article A: Time Magazine Excellent cover story on AUTISM

Inside the Autistic Mind

A wealth of new brain research--and poignant testimony from people who have autism--is lifting the veil on this mysterious condition

By CLAUDIA WALLIS
Posted Sunday, May. 07, 2006


 

The road to Hannah's mind opened a few days before her 13th birthday.

Her parents, therapists, nutritionists and teachers had spent years preparing the way. They had moved mountains to improve her sense of balance, her sensory perception and her overall health. They sent in truckloads of occupational and physical therapy and emotional support. But it wasn't until the fall of 2005 that traffic finally began to flow in the other direction. Hannah, whose speech was limited to snatches of songs, echoed dialogue and unintelligible utterances, is profoundly autistic, and doctors thought she was most likely retarded. But on that October day, after she was introduced to the use of a specialized computer keyboard, Hannah proved them wrong. "Is there anything you'd like to say, Hannah?" asked Marilyn Chadwick, director of training at the Facilitated Communication Institute at Syracuse University.

With Chadwick helping to stabilize her right wrist and her mother watching, a girl thought to be incapable of learning to read or write slowly typed, "I love Mom."

A year and a half later, Hannah sits with her tutor at a small computer desk in her suburban home outside New York City. Facilitated communication is controversial (critics complain that it's often the facilitator who is really communicating), but it has clearly turned Hannah's life around. Since her breakthrough, she no longer spends much of her day watching Sesame Street and Blue's Clues. Instead, she is working her way through high school biology, algebra and ancient history. "It became obvious fairly quickly that she already knew a lot besides how to read," says her tutor, Tonette Jacob.

During the silent years, it seems, Hannah was soaking up vast storehouses of information. The girl without language had an extensive vocabulary, a sense of humor and some unusual gifts. One day, when Jacob presented her with a page of 30 or so math problems, Hannah took one look, then typed all 30 answers. Stunned, Jacob asked, "Do you have a photographic memory?" Hannah typed "Yes."

Like many people with autism, Hannah is so acutely sensitive to sound that she'll catch every word of a conversation occurring elsewhere in the house, which may account for much of her knowledge. She is also hypersensitive to visual input. Gazing directly at things is difficult, so she often relies on her almost preternatural peripheral vision. Hannah's newfound ability to communicate has enabled her intellect to flower, but it also has a dark side: she has become painfully aware of her own autism. Of this, she writes, "Reality hurts."

MORE THAN 60 YEARS AFTER AUTISM WAS first described by American psychiatrist Leo Kanner, there are still more questions than answers about this complex disorder. Its causes are still uncertain, as are the reasons for the rapidly rising incidence of autism in the U.S., Japan, England, Denmark and France. But slowly, steadily, many myths about autism are falling away, as scientists get a better picture of what's going on in the bodies and brains of people with autism and as more of those who are profoundly affected, like Hannah, are able to give voice to their experience. Among the surprises:

Autism is almost certainly, like cancer, many diseases with many distinct causes. It's well known that there's a wide range in the severity of symptoms--from profound disability to milder forms like Asperger syndrome, in which intellectual ability is generally high but social awareness is low. Indeed, doctors now prefer the term Autistic Spectrum Disorders (ASD). But scientists suspect there are also distinct subtypes, including an early-onset type and a regressive type that can strike as late as age 2.

• Once thought to be mainly a disease of the cerebellum--a region in the back of the brain that integrates sensory and motor activity, autism is increasingly seen as a pervasive problem with the way the brain is wired. The distribution of white matter, the nerve fibers that link diverse parts of the brain, is abnormal, but it's not clear how much is the cause and how much the result of autism.

• The immune system may play a critical role in the development of at least some types of autism. This suggests some new avenues of prevention and treatment.

• Many classic symptoms of autism--spinning, head banging, endlessly repeating phrases--appear to be coping mechanisms rather than hard-wired behaviors. Other classic symptoms--a lack of emotion, an inability to love--can now be largely dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.

• The world of autism therapy continues to be bombarded by cure-of-the-day fads. But therapists are beginning to sort out the best ways to intervene. And while autism is generally a lifelong struggle, there are some reported cases in which kids who were identified as autistic and treated at an early age no longer exhibit symptoms.

THE CURIOUS INCIDENCE

DR. THOMAS INSEL, DIRECTOR OF THE National Institute of Mental Health (NIMH), which funds much of the nation's autism research, remembers a time when the disorder was rarely diagnosed. "When my brother trained at Children's Hospital at Harvard in the 1970s, they admitted a child with autism, and the head of the hospital brought all of the residents through to see," says Insel. "He said, 'You've got to see this case; you'll never see it again.'"

Alas, he was mistaken. According to the Centers for Disease Control and Prevention (CDC), about 1 in 166 American children born today will fall somewhere on the autistic spectrum. That's double the rate of 10 years ago and 10 times the estimated incidence a generation ago. While some have doubted the new figures, two surveys released last week by the CDC were in keeping with this shocking incidence.

No one can say why the numbers have soared. Greater awareness and public health campaigns to encourage earlier diagnosis have surely played a part, since in the past, many such children were probably labeled retarded or insane and hidden in institutions. But environmental factors may also be contributing to the spike. To get to the bottom of that mystery and others, federal funding for autism research has more than tripled in the past decade, to $100 million, although it pales in comparison with the estimated $500 million spent on childhood cancers, which affect fewer youngsters.

At the Center for Children's Environmental Health and Disease Prevention at the University of California at Davis, toxicologist Isaac Pessah is studying hair, blood, urine and tissue samples from 700 families with autism. He's testing for 17 metals, traces of pesticides, opioids and other toxicants. In March Pessah caused a stir by releasing a study that showed that even the low level of mercury used in vaccines preserved with thimerosal, long a suspect in autism, can trigger irregularities in the immune-system cells--at least in the test tube. But he does not regard thimerosal (which has been removed from routine childhood vaccines) as anything like a smoking gun. "There's probably no one trigger that's causing autism from the environmental side," says Pessah, "and there's no one gene that's causing it."

Indeed, most researchers believe autism arises from a combination of genetic vulnerabilities and environmental triggers. An identical twin of a child with autism has a 60% to 90% chance of also being affected. And there's little doubt that a vulnerability to ASD runs in some families: the sibling of a child with autism has about a 10% chance of having ASD. Gene scientists working on autism have found suspicious spots on chromosomes 2, 5, 7, 11 and 17, but there are probably dozens of genes at work. "We think there are a number of different autisms, each of which could have a different cause and different genes involved," says David Amaral, research director of the MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, also at U.C. Davis.

Amaral is heading MIND's efforts to assemble a database of clinical, behavioral and genetic information on 1,800 autistic kids. One goal is to clearly define autism subtypes. "It's hard to do the genetics if you're talking about four or five different syndromes," says NIMH chief Insel. "Does the presence of seizures define a separate illness? What about the kids who seem to develop normally for the first year and a half and then regress--is that a separate thing?" And what about the large number of autistic kids who have serious gastrointestinal problems and the many with immune dysfunctions--are they distinct subtypes?

Amaral and colleague Judy Van de Water believe they are onto a major discovery about the origins of at least one type of autism--a strongly familial variety. They have detected aberrant antibodies in the blood of kids from families with a pattern of ASD and, significantly, in mothers with more than one autistic child. "These antibodies are actually raised against proteins in the fetal brain," says Amaral, who recently submitted a paper on the discovery. The working hypothesis is that these antibodies may alter brain development in ways that lead to autism. If correct, the finding could lead to a maternal blood test and the use of a therapy called plasmapheresis to clear antibodies from the mother's blood. "You get a sense of the excitement," says Amaral, "if you could prevent, say, 20% of kids from getting autism. But we don't want to raise false hopes."

THE AUTISTIC BRAIN

WHETHER THE CAUSE IS MATERNAL antibodies, heavy metals or something else, there is no question that the brains of young children with autism have unusual features. To begin with, they tend to be too big. In studies based on magnetic resonance imaging (MRI) and basic tape-measure readings, neuroscientist Eric Courchesne at Children's Hospital of San Diego showed that while children with autism are born with ordinary-size brains, they experience a rapid expansion by age 2--particularly in the frontal lobes. By age 4, says Courchesne, autistic children tend to have brains the size of a normal 13-year-old. This aberrant growth is even more pronounced in girls, he says, although for reasons that remain mysterious, only 1 out of 5 children with autism is female. More recent studies by Amaral and others have found that the amygdala, an area associated with social behavior, is also oversize, a finding Amaral believes is related to the high levels of anxiety seen in as many as 80% of people with autism.

Harvard pediatric neurologist Dr. Martha Herbert reported last year that the excess white matter in autistic brains has a specific distribution: local areas tend to be overconnected, while links between more distant regions of the brain are weak. The brain's right and left hemispheres are also poorly connected. It's as if there are too many competing local services but no long distance.

This observation jibes neatly with imaging studies that look at live brain activity in autistic people. Studies using functional MRI show a lack of coordination among brain regions, says Marcel Just, director of Carnegie Mellon's Center for Cognitive Brain Imaging in Pittsburgh, Pa. Just has scanned dozens of 15- to 35-year-old autistic people with IQs in the normal range, giving them thinking tasks as he monitors their brain activity. "One thing you see," says Just, "is that [activity in] different areas is not going up and down at the same time. There's a lack of synchronization, sort of like a difference between a jam session and a string quartet. In autism, each area does its own thing."

What remains unclear is whether the interconnectivity problem is the result of autism or its cause. Perhaps all that excess wiring is like the extra blood vessels around the heart of a person who has suffered a heart attack--the body's attempt to route around a problem. Or perhaps the abnormal growth of the brain has to do with the immune system; researchers at Johns Hopkins have found signs that autistic brains have chronic inflammation. "It's impossible to tell the chicken from the egg at this point," Just says.

Autistic people have been shown to use their brains in unusual ways: they memorize alphabet characters in a part of the brain that ordinarily processes shapes. They tend to use the visual centers in the back of the brain for tasks usually handled by the prefrontal cortex. They often look at the mouth instead of the eyes of someone who is speaking. Their focus, says psychologist Ami Klin of Yale's Child Study Center, is "not on the social allegiances--for example, the longing gaze of a mother--but physical allegiances--a mouth that moves."

Do these differences reflect fundamental pathology, or are they downstream effects of some more basic problem? No one knows. But the fact that early intervention brings better results for children with ASD could be a clue that some of the odd brain anatomy and activity are secondary--and perhaps even preventable. Studies that look at whether early therapy might help normalize the brain are beginning at York University in Toronto, but results are probably years away.

AUTISM FROM THE INSIDE

IN THE MEANTIME, 300,000 SCHOOL-AGE American children and many adults are attempting to get through daily life with autism. The world has tended to hear from those who are highest functioning, like Temple Grandin, the author and Colorado State University professor of livestock behavior known for designing humane slaughterhouses. But the voices of those more severely affected are beginning to be heard as well. Such was the case with Sue Rubin, 27, a college student from Whittier, Calif., who has no functional speech and matches most people's stereotyped image of a retarded person; yet she was able to write the narration for the Oscar-nominated documentary about her life, Autism Is a World.

What such individuals have to say about their experience is offering new clues to their condition. It also conforms remarkably to what scientists see inside their brains. By and large, people with ASD have difficulty bringing different cognitive functions together in an integrated way. There is a tendency to hyper focus on detail and miss the big picture. Coordinating volition with movement and sensation can be difficult for some. Chandima Rajapatirana, an autistic writer from Potomac, Md., offers this account: "Helplessly I sit while Mom calls me to come. I know what I must do, but often I can't get up until she says, 'Stand up,'" he writes. "[The] knack of knowing where my body is does not come easy for me. Interestingly I do not know if I am sitting or standing. I am not aware of my body unless it is touching something ... Your hand on mine lets me know where my hand is. Jarring my legs by walking tells me I am alive."

Such descriptions shed light on seemingly self-destructive behavior like biting, scratching, spinning and head banging. For people like Rajapatirana, banging against a wall can be a useful way to tell, quite literally, where their head is at. "Before we extinguish [such behaviors], we need to understand what they are telling us," writes Judith Bluestone, a Seattle-based therapist who is autistic, in The Fabric of Autism.

In his new book Send in the Idiots, British journalist Kamran Nazeer, who is also autistic, describes the need for repetitive motions or words as a search for "local coherence" in a world full of jarring randomness. He also conveys the social difficulties: "Striking up conversations with strangers," he writes, "is an autistic person's version of extreme sports." Indeed, at a recent retreat for people with ASD, attendees wore colored tags indicating their comfort level with spontaneous conversation: red meant don't approach, yellow meant talk if we've already met, green indicated, "I'd love to talk, but I'm not good at initiating."

Perhaps the worst fate for a person with ASD is to have a lively intelligence trapped in a body that makes it difficult for others to see that the lights are on. Neuroscientist Michael Merzenich at the University of California, San Francisco, studied an autistic boy who is unable to speak or even sustain his attention to a task for more than a few moments, and yet is aware of his condition and writes remarkable poetry. How many other autistic kids, Merzenich wonders, "are living in a well where no one can hear them"?

Luckily for Hannah, her voice and thoughts are being heard. Since learning to type, she has begun to speak a few words reliably--"yes," "no" and the key word "I"--to express her desires. All this seems miraculous to her parents. "I was told to give up and get on with my life," says her mother. Now she and her husband are thinking about saving for college.

With reporting by With reporting by Dan Cray/ Los Angeles

A Tale of Two Schools
Early intervention in a well-run program is the key to helping autistic children reach their potential. A close-up look at two approaches

By CLAUDIA WALLIS
Posted Sunday, May. 07, 2006

From the moment parents absorb the shock that their child may be autistic, they enter a dizzying world of specialists, therapists and, alas, purveyors of snake oil. Getting the right help quickly is paramount, but it is hard to make good decisions when you are in a panic or fighting despair.

For the past 20 years, the dominant way to work with autistic children has been based on Applied Behavior Analysis. ABA derives from the classic work of psychologist B.F. Skinner, who showed--mostly in animals--that behavior can be altered with carefully repeated drills and rewards. In 1987, Ivar Lovaas at UCLA published a small study with huge repercussions. He reported that 9 out of 19 autistic children taught for 40 hours a week with behaviorist methods had big jumps in IQ and were able to pass first grade; only 1 out of 40 in control groups did so. It was the first bright ray of hope in autism.

Recent years have brought questions about the ABA model. When Lovaas protégé Tristram Smith tried to replicate the 1987 findings in a 2000 study, he got a more modest success rate on academic measures and virtually no gains in social behavior. Others, meanwhile, have devised new ways of working with autistic kids. One of the best known was developed by child psychiatrist Stanley Greenspan, who spent 15 years studying infant development at the National Institute of Mental Health. His method, called DIR (developmental, individual-difference, relationship based), has as its premise the idea that an exchange of emotional signals, initially between mother and infant, form the basis for learning in childhood. Greenspan trains parents and teachers to engage the emotions of even the most withdrawn toddlers by getting down on the floor and entering the child's world, helping turn repetitive acts like lining up blocks into playful interactions. He describes the method, also called Floortime, in a new book, Engaging Autism.

While the majority of U.S. programs for autistic children are based on ABA techniques, DIR has made inroads, and many programs now mix elements of both. How do the techniques differ in practice? To find out, TIME visited two schools, each a model for one school of thought.

ALPINE LEARNING GROUP

IT'S EASY TO SEE WHY A PARENT would fight to get a child placed here. Who wouldn't want this calm, orderly world for an anxious child with all the sensitivities of autism? Alpine, in Paramus, N.J., has 28 students, ages 3 to 21, in six gleaming, light-filled classrooms. The staff-to-child ratio is 1 to 1. The $72,223 tuition is covered by the state--federal law requires a free education for children with disabilities in an "appropriate" setting.

At Alpine, every goal, every lesson, every response is carefully documented in binders that track each child's progress. That is the rigorous heart of ABA, explains executive director Bridget Taylor, who co-founded the school in 1988. "I'm a scientist-practitioner; I need data," says Taylor, a certified ABA therapist with a Ph.D. in psychology. The binder for Jodi DiPiazza, 4, is easily seven inches thick, though Jodi has been at Alpine less than a year. Like most other children at the school, she started ABA therapy at home as a toddler.

In her classroom, Jodi sits quietly at a small table with a teacher. They take turns looking at photos and using a complete sentence to describe the scene ("The girl is riding a bike"). Each correct answer earns Jodi a sticker on a chart; with enough stickers she can choose a reward. ABA was once famous for its M&M rewards, but better programs now tailor positive reinforcement to the child's preferences--a favorite activity, a hug or, in the case of one Alpine student, a packet of ketchup. Though Jodi didn't talk at all until age 3, she speaks well and is mastering skills quickly with the help of two hours of tutoring in the evening. "From the moment she wakes up till she goes to sleep, everything is structured," says her mother Michelle, who is thrilled with Jodi's progress.

Taylor says 29% of her students, most from ages 5 to 8, get mainstreamed into regular schools, generally with an aide. Many who remain at Alpine have limited language skills; some of the older students use electronic devices to express basic desires. The ritualistic behavior that is characteristic of autism is strongly suppressed. "Hands down," says a teacher to a child who begins to flap. "We're not a culture that accepts that," says Taylor. "Fifty percent of the battle is addressing behavior to look good."

In a classroom with four teenage boys, the focus is on life skills. Johnathan learns to type a grocery list, which he and an instructor will later take shopping. Another boy, learning to use a camera, asks visitors whether he may take their picture. He uses the same words and intonation each time he asks.

Robotic behavior, lack of emotion and inability to use trained skills outside school are some of the shortcomings critics attribute to ABA. A boy who has learned to play Nintendo games at Alpine, for instance, reverts to simply switching the game on and off when at home. Proponents concede certain weak points, but they also note a long record of results. Says Tristram Smith of the University of Rochester: "Anything outside ABA is basically experimental at this point."

CELEBRATE THE CHILDREN

THIS IS NOT A QUIET SCHOOL. The hallways are filled with the sounds of kids talking and playing. The walls are festooned with banners, photographs and artwork. Parents always ask whether it's too much stimulation, says director Monica Osgood, but the school wants its students to adapt to the "real world." Celebrate the Children (CTC), which costs $47,856 a year--paid by the state--is one of a growing number of DIR schools. It opened its doors in Stanhope, N.J., in January 2004 with just three students. It now has 41, from toddlers to teens, and is still expanding fast.

CTC emphasizes the expression of emotion and spontaneous thinking. Rather than work on a highly specific skill, DIR activities tend to include complex social interactions that build many skills at once. In a classroom for 5-to-9-year-olds, eight kids sit in a circle playing a game in which they pick an activity card and a card showing a classmate's face. Children earn cheers as they perform the designated activity with that classmate (giving Olivia a high five, hugging Alex). Instead of tangible rewards, shouts of encouragement, a sense of accomplishment and what Greenspan calls the "warm, pleasurable feelings" that come from human interaction serve as a reinforcement for learning. In a classroom of 11-to-14-year-olds, kids are asked to stand in a narrow row between two strips of blue crepe paper representing water. The challenge: to arrange themselves in height order without stepping over the lines and falling "off the boat." The task combines communication skills, problem solving and visual, spatial skills. Teachers at CTC are trained to work on sensory issues and use the principles of occupational therapy throughout the day, Osgood explains, rather than in a separate program.

At the core of CTC is Floortime, one-on-one, child-directed play periods. In one such session, David, 6, goes down a slide again and again. Each time he reaches the top of the ladder, a teacher playfully blocks his way, leading this very passive child to make eye contact and make his wishes known. "She wants him to move her hand or say 'Move' and be intentional," explains Lauren Blaszak, CTC's assistant director. "She's got an agenda; he doesn't know it. He keeps going back for more because it's fun." Building social interactions this way, she says, will make it easier for David to join circle games at school and sit at the dinner table at home.

Osgood worked in an ABA program for six years. "It does a great job with skills," she says, "but the kids lacked the ability to think on their feet, to problem solve and to engage socially." She also feels that the ABA emphasis on "looking normal" doesn't address the reasons for behaviors like flapping and rocking: "Those are organizing strategies to cope with anxiety. Our philosophy is not to say 'Don't do that.' In DIR, we respect them for who they are but give them the tools they need for successful lives." Sometimes literally: Osgood tosses a boy a Koosh ball when he asks for something to fiddle with in his hand. Knowing to ask, she says, is part of learning to regulate oneself.

While Greenspan has published impressive long-term results, his critics say there's an absence of controlled, randomized studies. He is responding with a series of studies just getting under way at York University in Toronto. Among them is work that should help illuminate choices for struggling parents: imaging studies that will compare the brains of DIR kids with those treated with ABA.

With reporting by With reporting by Amy Lennard Goehner

The Most Difficult Decision of My Life
By AMY LENNARD GOEHNER

Posted Sunday, May. 07, 2006

When my 47-year-old husband Fred lay dying in a hospital from a heart attack, I sobbed to my brother, "He can't die. Who will give Nate his shots?" Nate was our autistic son, then 5, and the injections were one of the myriad can't-miss cures we had tried in order to help him.

My husband died that night seven years ago, and I felt it was the end of the world for me, for our newly adopted 10-week-old son Joey and, most of all, for Nate, whose strongest connection was to Fred.

I learned to inject Nate. And when I decided a few months later that the shots weren't helping him, the decision to stop seeing that doctor (a doctor who had told Fred and me that Nate wasn't autistic and that he could cure him) was the most difficult one I had ever made without Fred.

The most difficult, that is, until I decided two years ago to send Nate to a residential school.

I enrolled Nate in the Boston Higashi School in Randolph, Mass., because I knew he was now capable of more (though I had no idea what "more" was). After years of day school followed by speech, occupational and behavior therapy, Nate had no master plan connecting everything. And I constantly worried that his ritualistic behaviors--like his insistence on sitting in the same seat in the last row of the city bus and crawling over anyone to get there--were never going to decrease.

During Nate's first week at Higashi, I got a call from his teacher asking me to send a pair of sneakers with laces. Why does he need laces when there's Velcro?, I wondered. "Because learning to tie shoes is a life skill," his teacher told me. It was an "aha!" moment for me--the first of many. Higashi is committed to preparing students for lifelong inclusion in the community, so it sends the kids home, with detailed vacation goals, for eight weeks of the year. That way, they can generalize the lessons they learn in school.

Higashi was founded by Dr. Kiyo Kitahara, a teacher who believed in searching out the "bud of self-identity" in every autistic child and fostering it with loving care. Her program, Daily Life Therapy, is more like Floortime than like ABA (see "A Tale of Two Schools") but takes its own unique approach. The first step is to get the child to develop a 24-hour rhythm through intense physical exercise. For example, a lot of autistic kids will eat only a few select foods, and many have difficulty sleeping through the night. At Higashi the kids jog twice a day on the theory that come mealtime, they'll be hungry enough to try new foods. And the endorphins released during exercise reduce anxiety--which is good because Higashi does not permit the use of psychotropic medications.

All that exercise also means the kids are exhausted at the end of the day and tend to sleep through the night. Nate was always fine after he fell asleep, but oh, those endless routines leading up to bedtime! For eight years, he insisted on sleeping in the same red T shirt with a yellow taxi on it, his large toy keyboard piano laid across his chest, his stuffed animal placed on a chair facing him and the radio playing a 24-hour news station.

Believing that many autistic kids can be reached by tapping into their creative abilities, the teachers have nourished Nate's love of sports and music. And he has never seemed happier. I can see his rigidity loosening every time he comes home or I visit him at school. Even Joey has noticed the changes. Nate has always confused the pronouns I and you. One day during Nate's most recent vacation, Joey said to me excitedly, "Did you hear that, Mom? Nate said, 'I want to play' instead of, 'You want to play.' He's becoming unautistic!"

Nate's teacher called me last week. She told me that on the basis of Nate's athletic ability and leadership skills, he had been chosen to represent Higashi at the Special Olympics this summer at Harvard.

I sent Nate to Higashi because I knew he was capable of more. I know exactly what my husband would have quipped: "I can't believe Nate's going to Harvard!"

Letter to the editors at TIME MAGAZINE

Dear Time Magazine:

Thank you for the cover issue of “New Insights into the Hidden World of Autism” May 15, 2006 issue.

Words cannot express the thanks I have for your efforts in portraying autism in a new and more accurate light. As a parent of a 9 year old child that has autism, your issue brought tears to my eyes by removing the myths and legends surrounding autism. You revealed a more updated and accurate view of these amazing children who need our help, love, and understanding. For that I am thankful.

The only thing not quite right was they said that “all routine vaccines given to children no longer contain mercury.” That is not exactly true.

Here is the list of vaccines from the FDA web site that contain mercury:

http://www.fda.gov/cber/vaccine/thimerosal.htm#t3

Recently the American Academy of Pediatrics added to the routine schedule the FLU vaccine starting at 6 months with an initial shot and 3 boosters until age 5 years. 75% of the flu vaccines on the market today contain 25 micrograms of thimerosal (mercury). So mercury is not completely out of the picture yet. It would be very nice indeed if the 2 nd most neurotoxic chemical on the planet was.

Thank you,
Lisa Ackerman
Proud mom of Jeff
Newport Beach CA

 

2. Article B: Pediatricians Fail to Screen for Autism, Johns Hopkins Study Finds; Most Know Too Little About the Screening Tools

       BALTIMORE, May 9 (AScribe Newswire) -- Few Maryland and Delaware primary care pediatricians screen patients regularly for autism and autism-spectrum disorders (ASD) as part of their overall look at possible developmental delays, according to results of a joint study from Johns Hopkins Children's Center and the Johns Hopkins Bloomberg School of Public Health.

       Of the 255 pediatricians who participated in the study, 209 (82 percent) said they regularly screen their patients for general developmental delays, but only 20 of the 255 (8 percent) said they do so for ASD. Of those who do not screen routinely for ASD, almost two-thirds (62 percent) said they failed to do so because they weren't familiar with the screening tools.

       "Lack of familiarity with ASD screening tools appears to be the single greatest barrier to routine screening," said Susan dosReis, Ph.D., of the Children's Center Division of Child and Adolescent Psychiatry and lead author of the paper, which appears in a May 11 supplement of the April issue of the Journal of Developmental and Behavioral Pediatrics.

       The findings suggest that screening for ASD remains largely opportunistic rather than systematic, researchers say.

       Screening is essential, as delay in diagnosis and treatment generally leads to poorer outcomes in children with developmental disorders.

       "This study suggests that current national efforts may not be sufficient to actively promote the use of ASD screening tools in the general pediatric practice," dosReis added. "So it is important to learn what some obstacles might be and what needs to be done to overcome those barriers."

       Previous research suggests that another factor might be that many pediatricians do not feel well-trained in general developmental and behavioral issues, researchers say.

       Enhancement of residency training, complemented by introduction and training in ASD screening tools, might boost ASD screening in the general pediatric practice, dosReis added.

       Almost half (47 percent) of the physicians who did not screen routinely said they preferred to send the child to a clinical specialist, whereas nearly one-third (32 percent) cited lack of time as a major reason for not screening. Of those who reported screening regularly for ASD, 90 percent said they were usually prompted to do so by parental concern and/or suspicion of ASD during routine examination.

       Of the 18 percent who reported not screening routinely for any developmental delays, 73 percent cited lack of time as their top reason.

       The prevalence of autism, estimated to be between 12 and 40 cases per 10,000 children, has grown over the last decade. The reasons behind the higher prevalence have flamed an ongoing debate. Some researchers attribute the increase to an actual jump in the incidence of the disorder, while others claim it is because of more aggressive screening and new diagnostic criteria, which leads to a higher number of new diagnoses.

       In the Hopkins study, 99 percent of the pediatricians who believed there is an increase in ASD prevalence attributed it, at least in part, to new diagnostic criteria. At the same time, 38 percent said that underlying risk factors, other than new diagnostic guidelines, have played a role. Of these, one-third believed that environmental factors played a role, while only 7 percent attributed the increase to genetic factors, and 1 percent attributed it to vaccinations.

       Researchers caution that the findings cannot be generalized beyond Maryland and Delaware because screening practices might vary by geographic area.

       Co-investigators included Craig Newschaffer, Ph.D., and Lakeisha Johnson of the Center for Autism and Developmental Disabilities Epidemiology at the Johns Hopkins Bloomberg School of Public Health; and Courtney Weiner, B.S., of the Children Center's Division of Child and Adolescent Psychiatry.

       The study was funded in part by the National Centers on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention.

       ABOUT JOHNS HOPKINS CHILDREN'S CENTER

       Founded in 1912 as the children's hospital of the Johns Hopkins Medical Institutions, Johns Hopkins Children's Center offers one of the most comprehensive pediatric medical programs in the country, from performing emergency trauma surgery, to finding causes and treatments for childhood cancers, to delivering a child's good bill of health. The Johns Hopkins Children's Center's pediatric trauma service is Maryland's only state-designated trauma center for children. (Did this previous line get added to our boilerplate statement somewhere along the way?) With recognized Centers of Excellence in 20 pediatric subspecialties including cardiology, transplant, psychiatric illnesses and genetic disorders, Children's Center physicians, nurses and staff provide compassionate care to more than 90,000 children each year. For more information, please visit: www.hopkinschildrens.org

 

2. Article C: Siblings Coping with Autism

May 31, 2006  One aspect of autism that rarely gets talked about is the brothers and sisters of autistic children whose lives are also profoundly affected by the disorder.

"There is no one I know who is more vulnerable to me than my brother," said writer Judy Karasik.

She's lived with autism since her childhood, as her 57-year-old brother has the disorder. They've written an illustrated book, "The Ride Together: A Brother and Sister's Memoir of Autism in the Family," about their childhood, and the story is not always sweet.

"He had bigger needs than the rest of us," said Karasik. "And you can say it made me a better person, but you don't always want to be a better person, and that's the truth."

It's also the truth that your childhood is turned on end when your sibling is autistic, as parents become absorbed in the life of that child whose needs can put severe limits on family activities.

"In my work, I find myself in this frequently ludicrous position of having to remind people who claim to be really interested in families, having to remind them that brothers and sisters are part of the family," said Don Meyer, who is based in Seattle but runs sibling workshops all over the country.

His "Sib Shops" give the brothers and sisters of the autistic the chance to share their experiences and learn they are not alone.

At one such workshop in Wisconsin, kids spoke of the embarrassment they occasionally experience in public when other people notice their autistic siblings.

They also live with the fear that their brother or sister will get hurt, or end up lost if they fail to keep watch, which is a lot for a child to bear.

 

2. Article D: The Cost of Autism

By Andrea Sovern

A recent article printed by the United Press International, quoted Michael Ganz, assistant professor of society, human development and health at Harvard School of Public Health, as the lifetime cost of caring for all persons with Autism as $35 billion.  Professor Ganz also states this may be an underestimate of the actual societal costs for caring for the individuals affected with Autism.  Although, the actual figure of $35 billion is rather disquieting, it is the second statement which should be seriously addressed.

According to Lifespire, a direct service provider for the developmentally disabled in New York City, current long-term care costs for adults needing intermediate care facility level of care is $10.125 million per person during their life time.  This is based on average services provided, which includes group home placement and supports, day program support, and recreational activities.   After the age of 18, those costs are translated to the tax payer in the form of Social Security, Medicaid and Medicare services.  This being a higher cost area, this may not reflect the costs for the rest of the country.   So looking at a state that has a comparable cost of living and an accurate tracking of individuals who are accessing long-term care services is imperative.

California , tracks the access of the long-term care supports and services provided through the Department of Developmental Services for individuals with developmental disabilities, which includes Autism.  Eligibility for services is a based on two set of criteria.  The first is diagnosis, which must be Autism, not Autism Spectrum Disorder, Asperger’s Syndrome or Pervasive Developmental Disorder.  The second is based on having a substantial disability in three functional daily living skills, such as self-care, receptive and expressive language, self-direction, capacity for independent living, economic self-sufficiency, learning or mobility.

The CDDS releases a quarterly report regarding the number of individuals over the age of 3 who have been determined eligible for services.  The April 2006 report had current number of adults ages 18 and older enrolled in services as 5,364 individuals with Autism.  Compare that to the number of children 17 years and younger as 23, 507 enrolled in long-term care services.  As disturbing as the disparity in the number of children affected by the disorder as compared to the adults, even more shocking is the actual costs for long-term care for these children. 

When you take the number of children affected times the long term costs reported by Lifespire, the costs for the state of California alone for these supports for the children affected by Autism is $238 Billion.  As alarming as this number is, that is calculated for one state only and in today’s economic terms.  Nor does this estimate take into account the loss of productivity and the inability of those affected to sustain gainful employment.

It seems Professor Ganz was correct, the $35 Billion cost for supports for all people with Autism is an underestimate.  Also underestimated is the impact on the solvency of programs such as Social Security, Medicaid and Medicare, which will also be providing supports for the Baby-boom Generation in conjunction with the aging population of children affected with Autism.  The question arises, without denying the societal responsibility to our most vulnerable populations, is this crisis avoidable for our country?

 

2. Article E: Special diets surpass drugs in autism treatment success

Go Dairy Free
5/7/2006

Public awareness of autism increased exponentially last week, when the U.S. Centers for Disease Control (CDC) released a report announcing the prevalence of autism in our country. In 2003 and 2004, two national health organizations interviewed the parents of approximately 98,000 school-aged children, combined. The results estimated that nearly 1 in every 175 children is living with autism. This equates to approximately 300,000 autistic school-aged children in the U.S. alone. Some researchers believe this number may still prove to be conservative.

To most Americans, this news comes as quite a shock. However, for the hundreds of thousands of parents with autistic children it is a mere affirmation that this condition deserves far more attention than it has been receiving.

Autism is a brain disorder that typically makes its presence known in early childhood. It affects several crucial areas of development including social interaction, communication, behavior, creativity, and imagination. Autism was formally identified around the mid-1900s, but it has persisted as a misunderstood and often mislabeled condition.

For decades the parents of autistic children have been experimenting with various medical and alternative treatments. Although a cure has yet to surface, their network of trial and error has yielded some surprising and positive results.

In 2005, The Autism Research Institute published their findings from an ongoing study, focused on the usefulness of different treatment interventions. Overall, they questioned nearly 23,700 parents of autistic children. The parents were asked to rate the therapies they had trialed according to effectiveness. The treatment options fell under three major categories: drugs; biomedical non-drug therapies, such as vitamin supplements; and special diets. Much to the dismay of major drug companies, the results swung largely in favor of alternative therapies and diet.

Approximately 50 different drugs were reported as tested. On average, 30% of the cases showed an improvement of symptoms, however, 31% actually got worse while on the drug. Biomedical non-drug therapies faired far better. 45% of the cases reported a decline in symptoms with only 5% exhibiting an increase. Amazingly, special diets rated as the most successful treatment category overall. Among the autistic children who were put on a special diet, 50% of the specific cases showed signs of improvement, while only 2% experienced a rise in symptoms.

The simple removal of dairy products was the special diet option trialed the most, with over 5,500 parental reports. On par with the category results, 49% of those who chose a dairy free treatment option found it to improve their child’s symptoms, while only 2% found it to worsen symptoms. Of those who were willing to take it a step further to a gluten free / casein free diet, a resounding 65% saw an improvement in symptoms. Gluten is a protein found in wheat and other flours, while casein is a highly allergenic milk protein.

Gradually, the gluten free / casein free diet is becoming a mainstream recommendation for the treatment autism. Primarily due to its high success rate, and relatively low risk of side effects. Other alternative treatments are beginning to receive similar recognition, particularly in the areas of reducing chemical exposure (in food, water, and the environment) and detoxification. Although numerous research studies do support the hypothesis that alternative therapies and special diets can dramatically aide in the severity of autism, the reason behind their success is still somewhat elusive. For this reason, experts recommend that parents consult a gastroenterologist before their autistic child undergoes a dietary modification.

Alisa Fleming is the Senior Editor of www.godairyfree.org your complete resource for living a healthy dairy free life. Parties interested in interviews and appearances with Alisa Fleming should contact Go Dairy Free public relations at 702 505-4426.
 

2. Article F: Adults with autism find services lacking

http://www.delmarvanow.com/deweybeach/stories/20060607/2292831.html

By Hilary Corrigan
Staff Writer

Inadequate housing, public transportation and solid employment options have grown into common complaints through the southern Delaware region.

For those with autism, though, the options narrow much further.

Millsboro resident Theodis Bowe searched for a group home for his two autistic adult sons, he told other parents at a May 23 meeting in Georgetown. He found crowded places with little privacy, members suffering from drug and alcohol addictions, time limits on kitchen and bathroom use.

"I don't think they should be forced to live in a place that you wouldn't want to live in yourself," Bowe said.

So he rented an apartment for them. Tony and Michael can walk to their jobs and the grocery store. Bowe visits and checks in by cell phone.

"They had to live independently," he said, encouraging other parents to prepare for their autistic sons' and daughters' futures.

The Lower Delaware Autism Foundation hosted the gathering, part of an effort by the Lewes nonprofit to target the needs of area adults with autism, a neurological disorder that impedes development of social and communication skills.

While the Sussex Consortium educates autistic students until they turn 21, the area lacks continuing programs, such as activities, as well as needed services, including housing, parents complained.

Some autistic adults, such as 24-year-old Antuan James, live at home with family. The arrangement works now, said his mother.

"I'm not going to live always," Pam James-White added.

The Bridgeville resident showed up at the meeting to hear options. She would like to see Antuan live in a home with a small group of residents, supervised by trained staff.

Rehoboth Beach resident Terry Barnheimer wants the same for her 22-year-old son, David. She figures that transitioning him into such a setting would also help him avoid a sudden switch when she dies. A comfortable home, Barnheimer pictures, run by caring workers.

"Where you know that they're safe," she said. "That would be like glory."

The population of adults with disabilities across Delaware has been growing, as those living here age and as retirees relocate to the region from other states and bring disabled children with them, according to Roy Lafontaine, deputy director of the Division of Developmental Disabilities Services, part of Delaware Department of Health and Social Services.

The division partners with various private and nonprofit agencies to provide services -- including housing, employment and caregivers -- for those with disabilities.

Warren Ellis, director of the division's adult special populations program that serves 114 people with behavior problems, mostly autistic people, expects the need for services to rise as a larger population of autistic students grows up. But for now, more group homes for autistic people aren't warranted.

"Not that many people over the years have been requesting residential services," Ellis said.

That may change.

"There are clearly more people with autism who are needing services," Ellis said, noting a statewide increase. "Most of those people are still in school."

Starting more group homes and home care services requires enough applicants who meet state eligibility requirements and enough money for the state to meet costs, Ellis said.

Division officials have worked with the Delaware Department of Education to project the number of graduates in coming years. Along with advocates, they have presented findings to lawmakers in an attempt to prepare for the future.

"We're well aware of it," Ellis said of expected rises in the state's autistic adults. "We've been tracking this."

Other concerns

Housing is not the only need.

Parents complained of a lack of transportation options and a small pool of available caregivers to hire when they need to work or travel.

Laurel resident Dorothy Thompson has been looking for a job for her 42-year-old autistic son, Kenneth, since 2002.

In caring for a friend's autistic daughter, Lewes resident Bonnie Zistl has trouble finding aides to watch 21-year-old Ashley Dinn.

"My biggest dilemma is, I work a full-time job," Zistl said. "You exhaust your friends getting them to babysit. They become not your friends real quick."

A community center or gym would help on weekends and evenings, since Dinn works weekdays. "Things that she would enjoy doing," Zistl said. "I'd be willing to pay for services."

Getting around the rural region presents another hurdle.

While Delaware Transit Corp. provides door-to-door service for $2 per trip, Barnheimer refuses to rely on the state agency.

"Half the time, they don't show up, they're always late," she said.

The federal Americans with Disabilities Act requires public transportation agencies to provide the same transportation services for disabled people as it does for others.

DART's 52 buses for paratransit services completed 900,000 trips through the state last year, according to Darrel Cole, of Delaware Department of Transportation.

"It's a great service," Cole said, noting that the buses arrive within a 30-minute reservation window. "Transportation is there, is available, for anyone with any sort of disability."

Zistl also refuses to rely on the agency, after a driver returned Dinn to her workplace when she acted out with behavior that autistic people have trouble controlling.

While drivers train to help those with disabilities on bus rides, they do not qualify as medical aides, Cole said.

"Our role is to transport folks in a safe manner," he said. "We're not capable of providing special needs."

Continuing care

Ellis' division aims to attract more agencies to Delaware to partner in providing services to autistic adults.

With limited resources, the division must prioritize, focusing first on disabled people who most need homes, who are poor, who lack caregivers or have been orphaned. While federal laws mandate education for disabled children, no such provisions ensure specific care for disabled adults.

"Many parents feel that it should be an entitlement," Ellis said of housing and services for autistic men and women. "Unfortunately, it's not."

That became clear to Lower Delaware Autism Foundation organizers at last month's meeting. "It's more bleak than I expected," Dr. Vivian Bush, a foundation board member and psychologist at the Sussex Consortium, said after hearing parents' comments.

For now, foundation leaders will consider expanding the programs and activities that they provide for autistic children to accommodate autistic adults.

But Charlotte Herbert, executive director of the group that formed in 2001, employs two workers, is run by an 18-member board and maintains a more than $400,000 annual budget, plans further steps. She will seek state and federal money, along with grants and private donations, to boost housing projects. "There's things that just need to change," she said.

 

3 Vaccine News

3. Article A: Dateline Feature The unorthodox practice of chelation

No one knows for certain what causes autism, but one theory has ignited an intense debate

By John Larson
June 4, 2006

Autism is a mysterious and devastating disorder that is believed to affect as many as 500,000 children in this country. No one knows for certain what causes autism, but one theory ‹ chelation‹ has sparked controversy. Now, Jim Adams wants to put that theory to the test. In a desperate quest for answers, he is using his scientific know-how to test a controversial therapy called "chelation." And he has a special reason for taking on this mission his daughter Kim.

Kim Adams knows every word, every move, every pause by heart because she has watched this same video thousands of times.

Like many diagnosed with autism, she is trapped in a world of repetition and ritual.

For example, her father Jim knows his daughter will want two braids because it is Wednesday. Kim insists on wearing two braids and a dress to school every Wednesday.

Her need for order is extreme. Even a minute change in routine, like a spot appearing on her father's shirt, can make her world feel frighteningly out of whack.

Kim Adams: Daddy¹s shirt. Jim Adams, Kim's father: Oh, daddy¹s shirt is dirty. Kim Adams: Mommy, daddy¹s shirt is dirty. Marie Adams, Kim’s mother: That¹s okay.

At 13 years of age, Kim is still a child who needs help with life's most basic skills. She can't brush her teeth without a list of directions, or make her bed without a series of pictures.

Jim Adams: My little girl was diagnosed with autism at age two-and-a-half. We were told it was a lifelong, incurable disorder. There was nothing we could do for her, that it was just a matter of time until we¹d probably have to institutionalize her. It was absolutely crushing.

Jim and his wife, Marie immediately ruled out institutionalizing Kim. And although already raising two other children, they began doing everything they could for Kim ‹ special diets, special teachers, special classes. While she appeared normal, Kim couldn't speak, couldn't follow simple instructions, and made little eye contact.

Mari