Fwd: ASA '08 Explores Global Reach of Autism

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An FYI!

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ASA 2008 Explores Global Reach of Autism

By Alyssa Banotai

KISSIMMEE, FL-Over 2,000 researchers, clinicians, people with autism,

families and advocates gathered at the Gaylord Palms Resort July 10-12 for

the 39th National Conference & Exposition of the Autism Society of America

(ASA). Acknowledging the growing global impact of the organization, ASA

president and CEO Lee Grossman noted that more than 70 international

attendees from 23 countries were in attendance, an appropriate fit with the

conference theme of " Shaping a World of Possibility. "

In his opening remarks Grossman highlighted the major achievements of ASA in

the past year, particularly the creation of a first draft of a " Declaration

of Human Rights for Persons with Autism Spectrum Disorders. " The document

states that autism is prevalent but treatable, has environmental triggers,

and is a chronic medical condition. That final tenet, if accepted and

acknowledged globally, could lead to medical coverage for people with

autism, he said.

" We have succeeded in changing the way people view autism, " Grossman stated.

" Today's issue is now about accessibility. The time for debate is over. It

is time to act. "

In keeping with the global theme of the event, ASA honored

Brandt, of the United Nations, who was responsible for the U.N. declaring

April 2 as World Autism Day. The speed with which the resolution for the

observation was adopted-less than six months-was " unprecedented " in the

history of the United Nations, he said, declaring the celebration " an

electrifying moment for all. "

Shattock, vice president of the World Autism Organisation (WAO), also

commented on the global nature of autism. " We are individuals, but we have

the same

problems all over the world, " he stated. " The problems are the same, but the

solutions are the same. Only the cultures are different "

Shattock is encouraged by the increased support and self-advocacy emerging

from people with autism spectrum disorders (ASD). " We've got to find a way

to accommodate them in all decision-making processes, " he said. " It won't be

easy, but it's got to happen. It's important that we speak with one voice. "

Hendren, DO, of the MIND Institute at the University of

California-, presented a keynote address titled " What Causes Autism?

How the Answer Guides Evaluation and Treatment. " He discussed research

pertaining to the genetic and environmental components of the disorder.

Autism is caused by a number of genetic factors, he said, adding, " We know

we're not going to find any one gene. " Nor does the cause of autism lie

solely with genetics. Increased prevalence as well as the documented

environmental risks linked to ASD serve as proof of a diversity in etiology.

" We're probably not going to find one smoking gun, " he said.

A recent research focus on environmental pollution has yielded some early

associations. A study in San Francisco, CA, found that high levels of

pollution were linked to an increased incidence of ASD in that area. Another

study from central California found that mothers who lived for an extended

period of time near farmlands that used pesticides had children who were

much more likely to be diagnosed with ASD.

Dr. Hendren cautioned that these research findings are associations only and

not established fact. However, they raise important questions to be

considered, he said. " Many of us share that scary feeling of 'What is in our

environment?' What can we do to change that risk? "

He stressed the importance of using treatments backed by strong evidence,

saying the best evidence consists of studies conducted using double-blind,

placebo control structures. " With any treatment that people are passionate

about, double-blind placebo studies must be done, " he said.

While behavioral treatments have been well established, he urged clinicians

to consider the role of mirror neurons in order to understand the mechanisms

that may allow treatment to be tailored further to a child's individual

needs. " We need to understand better the mechanisms involved so we know who

this will work for and why, " he said. While behavioral therapy often is

regarded as an ongoing practice, " we need to make that more of a science. "

Another treatment garnering attention consists of methyl B-12 injections to

treat symptoms. In a small study the injections showed positive results in a

majority of pediatric subjects. " This kind of treatment and intervention

holds a lot of promise, " Dr. Hendren said. " When we think about treating

autism, it's important to think about an integrated approach. "

Carole Kaulitz, MEd, CCC-SLP, and Ellyn Lucas Arwood, EdD, CCC-SLP,

discussed the challenges of a visual learner in an auditory world in their

presentation on " Autism: Language Strategies for Learning with a Visual

Brain. "

" Our culture isn't visual; our culture is auditory, " stated Dr. Arwood, a

professor in the School of Education at the University of Portland, in

Oregon, and an autism consultant.

The receiving ability for the sensory system of people with autism is

intact, but the ability to integrate the system in order to assign meaning

is challenging. Acoustic patterns do not form language, she noted. " Language

is auditory. We continue to push the sound, but it doesn't give them

language. "

Sensory input creates patterns and forms concepts in the autistic brain, she

said. " Children look for patterns, but language isn't forming patterns for

them. "

In teaching language to children with autism, it is vital to connect visual

images with visual-motor patterns to ensure learning. Instead of using

flashcards or previously drawn images, the therapist should draw the image

in front of the child in real time. " Movement is going to give them meaning,

not the picture necessarily, " Dr. Arwood said.

As interaction between patterns and concepts increases, the child will begin

to acquire language, she explained. " Language is the last stage in the

development. Language represents thinking. "

Different types of thinkers use different types of concepts for various

language functions. Sound used in therapy must be meaningful to the child.

" Our kids really have to translate, " said Kaulitz, a private practitioner in

Vancouver, WA. " English is an auditory language. "

While children are expected to learn the auditory properties of English,

many do not think using auditory properties, Dr. Arwood said. " Eighty-five

percent of children think visually, and 100 percent of our kids are using a

thinking system that is visual. Their ability to become literate depends on

educators' understanding of how children with ASD think and learn. "

She disputed the idea that cognition in children with autism cannot be

improved with therapy. Boosting language will boost cognition, she stressed.

" You can bring up cognition. Don't let anyone tell you differently. "

The presenters also discussed viconic language, the use of visual language

to translate English into visual thinking. Examples include oral cartooning,

the use of visual language specific to what the child sees. " Sound system

strategies do not work with our kids, " said Kaulitz, an autism consultant.

" Visual languages have more context than auditory language. They create

mental pictures. "

" You have to have patterns and concepts together to get language, " Dr.

Arwood concluded.

" Manga, Music and Medicine: Special Interest Areas of Students with

Asperger's Syndrome " was the title of a presentation by Ann

Winter-Messiers and Herr, PhD, both of Project PASS (Preparing

Autism Specialists for Schools) at the University of Oregon in Eugene.

Dr. Herr defined special interest areas (SIAs) as passions that capture " the

time, heart and mind of students with Asperger's. " These students often

define themselves by their SIAs, which vary widely.

A recent study she conducted with Winter-Messiers revealed SIAs as varied as

goats, saxophones, planes, rats, anesthesia and conjoined twins. They

studied the interests of 44 boys and girls, ages 7-19, with Asperger's.

Caucasian, Asian, Hispanic and African American children were represented in

the study, which consisted of a 10-question interview, a 40-item parent

survey and field observation notes.

Many of the students spoke of themselves negatively but saw their SIAs in a

positive light, the researchers found. " SIAs tend to provide a framework

through which they organize their world, " Dr. Herr explained.

However, some SIAs may be inappropriate, particularly in a school

environment. These include assault weapons, vampires and violent video

games. An inappropriate SIA is an interest that could be considered

physically, mentally or emotionally harmful, they said. A healthy SIA yields

the potential for friendships, while an unhealthy SIA detracts from social

approachability.

Parents and educators must bear the responsibility for quashing an unhealthy

SIA. " It's important to understand that it's OK to say no, " Winter-Messiers

said. " We are the caring, responsible adults in that child's life; and it's

OK to set boundaries. "

Removing an unhealthy SIA is a complicated and delicate process. The child

should not be made to feel ashamed of it. " Watch, listen, ask questions, and

never make assumptions, " she advised.

A child sometimes can be persuaded to use core elements to expand within an

area of interest beyond its unhealthy aspect. For instance, an SIA of

undergarments was expanded to fashion design, and an interest in toilets was

expanded to plumbing. " Make no mistake, " Winter-Messiers cautioned. " This is

a shift of magnitude for the child, and it will take time. " Parents and

educators can establish a reward system for the transition to encourage the

shift.

SIAs play a useful role in school and in a child's future, she said. " I

truly believe there is a career interest in every SIA. "

These interests can be integrated into the core curriculum as well, which

Winter-Messiers learned through her son's SIA of airplanes. Disinterest in a

school project turned to passion when he learned he could incorporate

airplanes into his research. " In a wonderful and unique way, we create a

forum to see what that student can really do, " she said.

Finding a place for an SIA in the classroom requires flexibility, creative

thinking, and seeing beyond limits of lesson plans and assignments. Teachers

have an important resource in parents, who are extremely familiar with their

child's SIA. " They know far more than we can, " Winter-Messiers said. " They

know how to use it to motivate the child. "

Teachers can benefit by including the SIA wherever possible in the

classroom. " Students might find something they like about school. The

student may become more emotionally aware and alive at school, " she stated.

It is important for educators to understand that students with Asperger's do

not consider SIAs to be mere hobbies or leisure activities. Their interests

should not be dismissed as a fixation or phase. " They hold the promise of

current progress and future quality of life, " she said.

In introducing " Play for Children with Autism, " special educator

Norwell, MA, stated, " Play is the foundation of everything. " Children with

autism, particularly those who are nonverbal, typically struggle in their

social interaction with other children. She paralleled the role of play in

early childhood to the role of work in adulthood.

" Play builds comprehension of the world. It reflects comprehension of the

world, " she explained. " It builds confidence in peer interactions, and those

peers are going to be their employers and fellow employees. "

The primary goal for every child she treats is literacy. Spelling can be a

particularly powerful tool for children who use AAC, she said. " Once they

can spell, they can put in their own ideas, " she said.

Therapists and educators need to openly demonstrate confidence in children

and their potential. " If we set up environments in schools based on what

they can do rather than what they know, we've missed the boat, " Norwell

said.

Children who are nonverbal struggle with gestures and supports. Clinicians

must help them develop reciprocity because increases in reciprocity yield

increases in learning, she said.

Communication circles initially can be formed around a child's interests.

" We can't expect them to make giant leaps, but we have to work on something

other than grabbing, " Norwell cautioned. " We've got to take their

communication and keep reinforcing it so they will do it more. "

She suggested that communication be embedded into therapy and play

activities. If communication is just worked on separately, a child's

communications during play may be taken for granted. " We're so hungry for

those words that sometimes we miss all they're giving us, " Norwell said.

Children who use AAC should have as many choices as possible on their

device. More choices mean more opportunities for communication and help

boost executive function, she said. " We have to rethink what we're putting

on devices. "

Word choices on AAC devices should offer opportunities for receptive

communication and immerse potential language into each chosen symbol. The

devices also should offer a focus and opportunity for receptive

understanding. " If we don't help them label their internal state, they

cannot stay regulated, " she said.

Play should allow a child to engage fully in activities rather than simply

follow a preplanned script. Visuals can be used to teach play, Norwell

suggested. " Adults have to act like kids if their goal is to enable the

child to play with other children. "

Structure must be involved on some level, particularly in group play where a

strict focus should be kept on fun and interaction. Clinicians should " lose

the crowd control mentality " in group work and move the focus away from

learning things like colors and the calendar, Norwell advised. Instead, they

should work on regulation and affect cueing and working with in-the-moment

communication opportunities that arise naturally during group work.

" Follow their lead and embellish, " she suggested. " Teach, don't time out. We

have to have that behavior regulation up front. You can teach appropriate

communication through affect cueing. "

Bestselling author and autism advocate Temple Grandin, PhD, gave the closing

keynote address, " Autism: A Personal Perspective, " on the final day of the

conference. She began her talk by emphasizing to parents the importance of

early intervention for children suspected to be on the autism spectrum.

Parents should enroll their children in therapy even while they wait to

receive an official diagnosis, said Dr. Grandin, an associate professor in

the Department of Animal Sciences at Colorado State University in Fort

.

She spent most of her lecture offering a look at life with autism,

particularly how people with autism view the world. For instance, many

people with autism struggle with auditory issues, which Dr. Grandin

described as hearing everything " like a bad cell phone connection. "

She urged constant patience in communicating with people on the autism

spectrum. " Brains that have problems have attention-shifting difficulties, "

she explained. " Give them time to process. "

For many people with autism, images appear to break up in the mind like a

mosaic, resulting in visual processing problems, she said. This explains why

many children with autism fear escalators and may experience discomfort in

areas with fluorescent lighting.

Researchers should focus more resources on sensory problems. This would

benefit not only people with autism but those with learning difficulties as

well.

Dr. Grandin also called for evidence-based treatment in the field of autism

research, saying the best scientific evidence comes from properly controlled

studies. However, she endorsed experimentation with simple, inexpensive

treatments, such as the use of light-colored sunglass lenses to adapt eyes

to fluorescent lighting and the use of laptop computers instead of desktop

computers because laptops do not use fluorescent lights in their screens.

The academic potential of people with autism should not be taken for

granted, she said. Today, Albert Einstein would have been diagnosed with

autism, she speculated. " I get worried there are a lot of Einsteins out

there cleaning toilets. "

The main problem in the autistic brain is disconnection. Dr. Grandin showed

slides of a brain scan conducted on her next to the scan of a person who did

not have autism. Her brain has an increased number of learning-based

circuits but is missing a number of social circuits that appear in a typical

brain. " I'm pretty much pure nerd, " she joked.

This disconnection is why people with the disorder respond best to

sensory-based stimuli, particularly images. " My mind works like Google for

images, " she explained. " You sort pictures into categories to form a

concept. Autistic thinking is bottom-up thinking. You put all the details

together to form a whole. "

To cater to this, parents can play games involving categories with their

children. However, autism should not be an excuse to ignore basic social

skills, particularly manners, no matter how challenging it may be. " We've

got to teach basic social skills, " Dr. Grandin stressed. " Even normal kids

have problems with them. "

She credited her 1950s upbringing for her manners and emphasis on

punctuality. Bad behavior was not tolerated in her childhood, she recalled.

Children with autism should not be excused for rudeness, poor table manners,

manipulation through tantrums, poor grooming, or laughing at the appearances

of others. " Teach values one concrete example at a time, " she advised.

She suggested using real-life examples of good manners or sportsmanship,

such as Tiger Woods, rather than exposing children to the inappropriate

behavior of some celebrities.

While social skills are teachable, social emotion is not. Children with

autism must be encouraged to try new things in order to form shared

interests with typically developing peers. " If you don't get exposed to new

things, how are you going to get interested? " she asked. " Some of these kids

need some pushing-but no surprises. "

Interests can be used to prepare teenagers who have autism for employment.

They should be encouraged to seek jobs and have mentors to guide their

career path. People with autism should be encouraged to assemble portfolios

to demonstrate their skills in a potential career area. " I got jobs by

selling my skill instead of myself, " Dr. Grandin said. " I don't interview

well. "

She urged parents and young adults with autism to use educational career

preparation resources available through community colleges, online learning

institutions and technical schools. " Think about jobs that aren't going to

be obsolete, " she advised.

*For More Information*

- Autism Society of America, online: http://www.autism-society.org/

*Alyssa Banotai is a Senior Associate Editor at *ADVANCE*. She can be

reached at *abanotai@...*.*

--

Liz

" Knowing trees, I understand the meaning of patience. Knowing grass, I can

understand persistence. "

- Hal Borland