BY KOREN MCKENZIE
SPECIAL TO THE FLORIDA COURIER
More than 35 of the world’s leading experts discussed new treatment options, research, resources and avenues for advocacy this month at the U.S. Autism & Asperger Association’s (USAAA) 2013 Annual World Conference held in Salt Lake City, Utah.
Speakers at the Aug. 15-18 conference included physicians, scientists, behaviorists, psychologists, educators, researchers, speech pathologists, occupational therapists, developmental specialists, social workers, nutritionists, siblings, teachers, self-advocates, parents and education consultants.
Attendees left the conference, held at the Sheraton Salt Lake City Hotel and Convention Center, with valuable information that will empower them to help themselves, their children, grandchildren, family, patients, friends, and others touched by autism, said Lawrence P. Kaplan, Ph.D, founder and chairman of the USAAA.
Increase in autism rates
Given the increase in autism rates, challenges with early diagnosis and demand for treatment modalities, USAAA’s conference was particularly valuable and significant for anyone impacted by autism, a developmental disorder typically diagnosed in early childhood. Autism impacts the brain in four major areas of functioning – language/communication, social skills, sensory processing and behavior.
Persons with autism can have unusual talents as well as impairments. No two individuals have the same traits with the same level of severity. It is a “spectrum” disorder with varying individual diagnoses collectively referred to as autism spectrum disorder (ASD).
Individuals on the spectrum range from those who are nonverbal with severe challenges that can include self-injurious behaviors, to individuals on the higher-functioning end of the spectrum (known as Asperger’s syndrome) who are extremely intelligent with good expressive verbal language, yet impaired social skills.
According to the Center for Disease Control (CDC), about one in 88 children has been identified with an ASD and one in 54 boys. The CDC reports that ASDs are almost five times more common among boys (one in 54) than among girls (one in 252). ASDs are also reported to occur in all racial, ethnic, and socioeconomic groups.
The Autism Society of America estimates that the lifetime cost of caring for just one child with autism ranges from $3.5 million to $5 million.
Lack of specialists
Autism is more common than childhood cancer, juvenile diabetes, and pediatric AIDS combined. According to a recent study published in The Journal of Special Education, the rate of autism in children of all races is on the rise. However, students who are Black, Hispanic or American Indian are less likely to be identified with an autism spectrum disorder compared to White and Asian students.
Early identification and treatment of autism is considered essential for best outcomes. A survey of pediatricians published in the Pediatrics journal on Aug. 19 suggests that language barriers in the doctor’s office and the lack of culturally appropriate awareness materials contribute to a lag in early diagnosis of autism among Latino families.
However, the pediatricians surveyed say that a common problem across all communities is the general lack of developmental and autism specialists – the biggest barrier to early diagnosis.
The USAAA’s mission is to “provide the opportunity for everyone living on the autism spectrum disorder to achieve their fullest potential, by enriching the autism community with education, training, accessible resources, and partnerships with local and national projects.”
Kaplan, the father of a child with autism, said 50 scholarships were offered to the underserved Latino community to attend the conference and the organization is exploring sources of outreach to the African-American community.
At the opening session on Aug. 16, Dr. Temple Grandin addressed more than 700 attendees. Grandin is one of the most famous and highly accomplished adults with autism in the world.
Her life was brought to the screen in the HBO film “Temple Grandin,’’ which received seven Emmy awards in 2010. A best-selling author, she also is a professor of Animal Sciences at Colorado State University.
She shared anecdotes, images of her brain, humor and a wealth of insight gained from her journey with autism. She discussed early intervention strategies, the importance of teaching and exposing children with autism and fostering a work ethic, preparation for employment and succeeding in the workforce, differences between verbal thinkers and visual thinkers, and the priority of addressing sensory processing issues common to persons on the spectrum.
Exploring the brain
Dr. Martha Herbert, Assistant Professor of Neurology at Harvard Medical School on the cutting edge of research and a Pediatric Neurologist with subspecialty certification in Neurodevelopmental Disabilities at the Massachusetts General Hospital, spoke on Aug. 17.
She is the author of “The Autism Revolution: Whole-Body Strategies for Making Life All It Can Be,” released in 2012. She discussed the various connections in the brain, the interrelationships between the brain and body, the latest treatment modalities, and brain plasticity – the brain’s natural ability to change. She also described the dynamics of how the brain can change for better or worse in response to negative input such as irritants or toxins or in response to positive input such as nutritional supplementation and healthy diet.
Other renowned experts and professionals included Tim Page, a Pulitzer Prize winner and professor who was grateful for his diagnosis at age 45; Stephen M. Shore, a world-renowned lecturer who overcame his autism challenges and is now a professor of special education; and Elaine Hall, a mother of a child with autism and founder of the theater and film program, The Miracle Project.
Living with autism
Siblings of individuals on the autism spectrum also shared their experiences and perspectives on living with autism, as well as lessons learned. Panel members ranged in ages from 9 to 19.
“Sometimes it can be really hard” said Qwyn, age 9, who has two siblings with autism.
“My sister’s mood is not always good,” but “I love her a lot, and my brother is in a group home.’’ Her mom, she says, taught her a lot about autism, as well as extended family members like her uncle who just treats her sister like a human being.
Another sibling, Madison, age 19, read a poem to the audience that her parents wrote in 2001 when she was 7 years old to help her and others understand autism. She says “it sucks sometimes,” but she realizes that every family has its own difficulties and everyone is going through something. It’s a matter of “perspective.”
Madison’s advice for siblings is to make an effort to have a relationship with a sibling with autism, even if it’s not traditional, as it will greatly enhance their lives beyond what they could believe.
When asked about bullying, the siblings shared the varying experiences of seeing their siblings fully accepted and appreciated, as well as rare occasions of dealing with people who are bullies and overly critical and judgmental.
“It makes me sad truly to see that people with disabilities are looked on so differently,” said 17-year-old Andrew. “I have personally made it my mission to make people understand that we are all equal and special in our own way.”
He added, “I’ve shed a few tears for my brother,” but “time and love heals all wounds.”
The shift in his perspective happened in growing up and realizing the effect of it. It was worth all of the work I put into it, Andrew says. “It gets better. You might see the troubles in front of you right now – the mountain – but once you climb it, you’re in the clouds and it’s great.”
A self-advocacy panel comprised of several highly esteemed persons diagnosed with autism or Asperger’s Syndrome candidly discussed the daunting personal challenges of coping with depression, misinformation, dietary issues, suicidal thoughts and self-harming behavior.
When asked what they would like people to remember the most, one panel member told the audience that she just wants people to understand what it’s like to live with autism and how hard they have to work. She wants people to “embrace them, accept them for who they are and understand their limits.”
“Even people who are neurotypical think differently than the person who is sitting next to them,” said another panel member, and if given the chance, “people with autism can succeed beyond anyone’s expectations and go farther than anyone ever thought they would.”
Video downloads of panel discussions and presentations at the conference are available for purchase on USAAA’s website at http://www.usautism.org/tv.
Email Koren McKenzie at email@example.com.