Article: Adults with autism beat odds

The disorder is common in Utah; U.'s research may offer hope for worried parents

By Heather May
The Salt Lake Tribune

Article Last Updated: 09/30/2008 02:31:13 AM MDT

MURRAY - Matthew Pond memorized Dr. Seuss' Hop on Pop when he was 2, but as he got older he couldn't name the color of Little Red Riding Hood's cape. He could speak, but he often repeated what he heard others say. He avoided eye contact.
    When Pond was diagnosed with autism almost 30 years ago, his mother, Debbie Pond, kept her expectations high: She told a parent support group she wanted him to attend school, make friends, go on an LDS mission, fall in love and raise a family.
    "[The parent leader] slammed his hand down on the desk and said: 'You guys need to get real. Your son will never do these things,' " she remembers.
    She explains this while sitting with Pond and his wife, Leann, in the couple's town house. Pond served an LDS mission, works as an armored truck guard, has an associate's degree and plans to get his bachelor's.
    His level of success is rare, according to University of Utah researchers who recently tracked down adults who were diagnosed with autism from 1960 to 1984 and had higher scores on intelligence tests as children.
    Nevertheless, the researchers and his family say Pond can offer inspiration in a state with a higher-than-average rate of autism, a disorder marked by unusual behaviors and difficulty communicating and interacting.
    "We thought that could provide some hope," says William McMahon, chairman of the U.'s psychiatry department, who is overseeing the study and is director of the Utah Registry of Autism and Developmental Disabilities. "We wanted to find out, at best, what can you tell parents about what their children might become 20 years later."
    'For us, that's hope.' In the 1980s, McMahon, other Utah researchers and the University of California School of Medicine in Los Angeles painstakingly found every autistic Utahn under age 25. The team reviewed their medical and education records, tested their IQs and interviewed their families.
    Back then, there were four autistic children and young adults per 10,000 people. Today, autism is diagnosed 20 times more often among children.
    But researchers know relatively little about the lives of autistic adults. Two years ago, U. doctoral student Megan Farley began tracking down the Utah children who had IQs of 70 or above (the average is 100).
    She interviewed 41 adults, spending eight hours with the now 22- to 46-year-olds and their parents or spouses, assessing whether they would still be considered autistic, since the standard has changed. She tested their IQs and evaluated their quality of life.
    McMahon and Farley were surprised to find half were doing better than what parents and teachers thought was possible. They had full- or part-time jobs. A few are married and have children. They have friends or acquaintances. One man is no longer considered autistic, having taught himself how to interact by watching movies and reading books.
    "It surprised us that some of them drive, just because of all of the unexpected things that occur while you're driving," Farley says. "For us, that's hope."
    A peek down the road. But the other half live in group homes or with parents. They may have jobs but need supervision. They have few to no friends. One works as a janitor two hours a day and returns home to his rituals: watching movies and routinely checking for the mail. Some lost abilities.
    "For us to be able to get a peek at what happens down the road from interventions that happened 20 years ago, that's incredible," says Pete Nicholas, director of the Carmen B. Pingree Center for Children with Autism in Salt Lake City. "There are those great outcomes and everybody should strive for the best they can do for their children. Recognize there will be those [children] you'll be excited about because they learn words."
    The study's findings may be published later this year. McMahon and Farley hope to interview the remaining adults and eventually learn what made a difference. In explaining the quest, McMahon points to the 2006 book Send in the Idiots, in which author Kamran Nazeer tracks down four autistic classmates 20 years later.
    The word "autism" comes from the Greek "autos", which means "self," Nazeer noted.
    "So much of what animates our lives - conversation, thought, creativity, friendship, politics - draws on understanding the world of other people," he wrote, "and yet autistic people may only be able to rely on one 'autos,' their own."
    'They can make it.' Pond says he felt alone and unaccepted growing up. Struggling to understand what was going on in grade school, he would blank out so intensely that adults worried he was having seizures. As a teen, he wished he could take a pill to make his disorder disappear.
    While Pond is still considered autistic - he struggles to comprehend what he reads and he is socially awkward - he feels he has beaten the odds. He credits his parents and good teachers.
    He and Leann, a special-education teacher, met on a blind date and were married in the Mount Timpanogos LDS temple four months ago. They say they share values and goals, including eventually having children.
    "I do have my downfalls and weaknesses," Pond says, "but at the same time, I don't use that as an excuse."
    Leann says his autism didn't scare her. "Who can define normal anymore?"
    Pond added: "I wanted to be able to show that someone who is dealing with an autistic child, they can make it."
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Documentary on Twins with Autism

Flo and Kay - Twin Savants
Discovery Health Channel
November 7 - 8 PM
Only female twin autistic savants in the world.

Beyond Us Meeting - Wed. Nov. 12 - COTA

Dear Beyond Us-Aspirations Families/Parents,

Our November meeting for Beyond Us will be the second Wednesday- November 12th  We usually meet the third Wednesday but the NATAPP Conference is scheduled for Nov. 18 to the 21st.

Beyond Us   November Monthly Meeting

Speaker - Kelly Stevenson from COTA - she will share various services COTA busses have for people with disabilities.

Wednesday - Nov. 12 -  7 to 9 pm

SERCC Center - 417 Glenmont, Columbus, Ohio  43214
(Go to the back of the building - the entrance is there)
(Glenmont is off of Indianola just south of the Cooke Rd./71 intersection.)

RSVP - This e-mail address is being protected from spambots. You need JavaScript enabled to view it    267-7679

(so Kelly will know how many handouts to bring and can set up the room)
---------------
I know that driving is a big milestone in terms of transitioning into adulthood.  I know the a fair number of our young adults are not able to handle being able to drive - it truly is very complex task.  My own daughter was evaluated at Dodd Hall and found to be ok to learn.  She learned but she does not like to drive.

  So, lucky for us in Columbus, we have our COTA bus system.  COTA has several programs for people with disabilities beyond being wheel chair accessible.  My daughter has a Key Card which requires her to have a form signed once a year by a professional (in her case Dr. Gordon) to get a Key Card.  The Key Card makes everything half price for her.  So she gets a monthly pass for $22 instead of $44.  There are other programs - the ADA card that makes it possible to schedule individual pick up with the Project Mainstream Bus.  There is a program where a COTA person will come to your home - help you determine the route you need to take and then actually ride the bus with you.  There might be more - we'll find out on November 12th.

I know some people fear the bus but my daughter has been riding for 6 or 7 years and has never feared for her safety.  I am very grateful that she is confident to ride the bus and figure out the schedules.  At this point, I really don't have the desire or energy to be her full-time taxi driver.

   I really encourage you and your young adults to come to this meeting if transportation is a concern in your family.  I believe this is an important key to helping our young adults work toward their independence and self-reliance a - one key to good self-esteem.

Also, this November meeting will be our last meeting at the SERCC center as the facility is being turned over to a State Education Team program.  In the meantime, I've contact Overbrook Presbyterian Church on High Street just north of the Park of Roses.  I attend a meeting there and it is a great place to meet.

I hope new parents, families, young adults will consider coming.  This is a wonderful opportunity to network with other parents who are working on similar issues - we are not alone!!

Nancy Beu

Beyond Us - Families of Adults with Aspergers, HFA, & PDD-NOS

Information from ODE-Office for Exceptional Children

http://www.ohioschoolforthedeaf.org/islr_newsletters.aspx

Bilingual Special Education Online Program

The George Washington University's bilingual special education online distance program is now accepting applications for the 15 credit hour graduate Certificate in Bilingual Special Education. Applications are being accepted for the Spring 2009 semester. The following distance education courses are available for Spring 2009.  Registration is open now.  Please contact Tara Courchaine at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or call (719) 660-7564
 
Spring Courses:

TRED 227      Teaching Reading and Writing in ESL
The course is designed to give the student theoretical and practical knowledge of the development of reading and writing skills in English for kindergarten through adult English language learners. It will provide students with an understanding of the literacy needs of ELL students; a theoretical background of second language reading and writing processes; and practice with instructional approaches that assist ELL students in becoming skilled and motivated readers and writers.
 
SPED 266       The Development of Language in Young (Exceptional) Children
The purpose of this course is to provide students with an introduction to the study of language acquisition in typically developing young children as well as children who are exceptional.

SPED 277       Teaching the Culturally and Linguistically Diverse Student with Special Needs: Methods, Materials and Classroom Management
The intent of this course is to present methods and materials for teaching and assessing students who are culturally and linguistically diverse (CLD) and/or who have exceptionalities.  Participants will engage in reflective practice as they analyze the language demands of classroom settings, as well as the instructional practices and materials for the special needs of all students.  Students will be exposed to research in and theories of language acquisition, curriculum development and classroom management for use with culturally and linguistically diverse students with and without disabilities. Instructional adaptations and assessment designed to meet the cultural, linguistic, academic, socio-emotional needs of students in the general education and pullout settings will be presented and discussed. Current curricula and material for CLD and/or exceptional learners will be reviewed.

For additional information or questions, please contact:
Tara Courchaine
Distance Program Coordinator
Bilingual Special Education
The George Washington University
(719) 660-7564
This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Election Day, November 4, 2008, is less than a week away. By now, you have made the final preparations to protect and assure your right to vote - you have registered to vote, received notification of your voting place, called ahead to make sure the building and voting booths are accessible, made arrangements for assistance to cast your ballot, arranged for transportation to the polls and have an acceptable form of identification. Now what?

Know the Candidates; Know the Issues

Along with the right to vote, you have a civic responsibility to know the candidates and the issues. Informed voting requires study, thought and reflection in advance of casting your ballot. Do not wait until entering the voting booth to start thinking about how to vote. Find out which candidates and issues will be on the ballot before Election Day.

This election, voters will elect the president and vice president of the United States and candidates for other federal, state, district and county offices. There are also five statewide issues (four proposed constitutional amendments and a referendum) on the ballot and issues specific to your locale - levies, initiatives and bond issues.

In addition to disability-specific issues, people with disabilities share the concerns of all citizens at election time - the economy, wars, education, taxes, immigration, the environment, employment, poverty and health care, to name a few. Once you've become acquainted with the ballot, learn more about how the candidates address the concerns that are important to you. Also, take time to learn more about the issues that will be on the ballot and how those issues impact your daily life. This will help you to decide which way to vote for each issue.

Find the Information

There are several places where you can get information about candidates and issues. The Secretary of State (SOS) maintains lists of all federal, statewide, General Assembly, county candidates and local issues. Visit the “What's on the ballot?” section of the SOS website for more information: http://www.sos.state.oh.us/SOS/elections/voterInformation/whatsontheballot.aspx

Your local county board of elections also provides information about what candidates and issues will appear on your local ballot. Another source of voting information is found at the county democratic or republican party office. A listing of these offices is found at the Ohio Democratic Party (http://www.ohiodems.org/site/c.mhLRKZPCLmF/b.3758903/) or Ohio Republican Party (http://www.ohiogop.org/counties/) websites.

One resource, developed by the Ohio Legal Rights Service (OLRS),  is a comparison chart of the presidential candidates' positions on disability-related issues. The “2008 Presidential Candidate Positions on Disability-related Issues” chart is available on the OLRS website at http://olrs.ohio.gov/prescompare.htm