The Reason For It All

Autism Versus "Autism-Like" Symptoms: What's the Difference?

The Autism File debuts in the US & Canada: Major international journal covering intervention and advocacy available September in Borders and Barnes & Noble

Autism Summit, July 29th

Welcome to SUN News--a weekly update for The Gray Center Social Understanding Network!

How Can a Family with an Autistic Child Overcome Isolation?

Helping HANDS for Autism Act Introduced in the House

I am seeking a Theatre Group

Looking for a good educational consultant

Looking for a job

Asperger's: the IT industry's dark secret

31ST ANNUAL SMSC "HAUTE WITH HEART' ON AUG 23RD

Looking for respite worker

Autistic Boy and Mom Kicked Off Plane

Empowering Through Information & the Fostering of Connections

I never endorse anyone or anything. Opinions expressed in what I send out, may not be shared by me. Everything is for informational purposes only.

People who "advertise" through this newsletter have never been checked out by me. This includes professionals and even people who are interested in babysitting, etc.

Please take the time to thoroughly check out anyone and everyone that will be working with or caring for your child. We are all sadly aware, through news stories and word of mouth, of people who pray upon special needs children because of their extra vulnerability.

Thank you,
Valerie Dodd-Saraf
My enewsletters are archived on my website:
www.ValeriesList.com

This is a question that's been bugging me ever since 9-year-old Hannah Poling's family received a settlement from the Vaccine Court. Evidently the combination of an underlying mitochondrial disorder and an unsually large number of vaccines led to "autism-like features" for which, it was agreed, the Polings should be compensated.

Help is on the way for 1 in 150 children, 1 in 88 boys diagnosed with autism

The Autism File magazine, a major autism retail- and subscription-based magazine sold in the UK, Spain, and Australia, today announced imminent distribution in retail outlets in the United States and Canada, with an initial distribution in 1600 stores including Borders and Barnes & Noble.

The Autism File board, led by Polly Tommey, Editor-in- Chief, has appointed Teri Arranga, Director of Autism One, as Editor for the US and Canada. Chantal Sicile- Kira, award-winning author of the books Autism Spectrum Disorders and Adolescents on the Autism Spectrum, who is The Autism File's "Dear Abby" columnist, has been appointed Director of Marketing for the US and Canada.

The Autism File includes articles and interviews from doctors, researchers, therapists, educators, advocates, persons on the spectrum, and parents who genuinely understand the factors underlying diagnoses faced by families with children and adults on the spectrum, including full- syndrome autism, Asperger's Syndrome, ADHD, ADD, dyslexia, and other related conditions.

"We are thrilled about the upcoming launch," states Editor-in-Chief Polly Tommey. "For the first time," Tommey continued, "a magazine devoted to autism will be available at retail outlets in the US. Often parents don't know where to turn to for help," Tommey emphasized. "We plan to change that by making everything about autism easily accessible to every parent in America and Canada." Says Tommey, "The journal comprehensively covers the many diverse aspects of autism from childhood through adulthood, including biomedical issues, educational interventions and therapies, advocacy and practical advice for daily life, in order to help children and families touched by autism worldwide. The journal brings together the latest research, opinions, and news from all corners of the globe. We feel that Teri Arranga's years of dedication to children and families, her editorial experience, and her established experience in doing exactly this will move The Autism File's mission forward."

Per Teri Arranga, "The Autism File's reach, plus Polly Tommey's natural talent for cogent international reporting combined with her sincere motivation to provide relevant information in a sustained mission of love and aid to children and families makes this a perfect fit."

Chantal adds, "It's great that a major autism magazine is finally going to be available in North American bookstores. The Autism File is a wonderful tool to cut through the clutter and bring parents, professionals, and those on the spectrum information they can use right away. I'm glad my "Ask Chantal" column will be reaching and helping people here now, and look forward to working with Teri and Polly on the US and Canada edition."

The Autism File debuts in the US and Canada with articles from leading luminaries such as Dr. Stephen Edelson and Dr. Elizabeth Mumper. The Autism File is also pleased to offer the new column "The Doctor is IN," where you can email your questions to a panel including scientific experts such as Dr. Kenneth Bock, Dr. Dan Rossignol and Dr. Amy Yasko at Askthedoctor@autismfile.com.

For more information, please visit http://www.autismfile.com/ or email info@autismfile.com.

July 29th, 5:30pm - 8:30pm
(Vendor Expo 5:30pm to 6:30pm)
Rancho Community Church's Family Life Center

Join us for our firt "Autism Summit" to be held on July 29th at the Rancho Community Family Life Center off of Highway 79 South/Temecula Parkway! The event will be from 5:30 to 8:30 and will feature local resources for families in the Temecula and Murrieta Valley that have been impacted by Autism. We will also have local businesses and city officials in attendance as we discuss the increasing number of children diagnosed with Autism in the Valley and how we as a community can come together to provide more local therapies and resources for all families in need.

If you are a business and are interested in more information about setting up a table or speaking at the even, please email Mark at mkanselmo@verison.net.

My article last week, "To Diagnose or Not to Diagnose," sparked many comments and discussions, both through email as well as our blog at http://www.graycenter.wordpress.com. It seems that most of the people who contacted me agree that in a perfect world, a "diagnosis" would not be necessary, but instead, people's needs would be met on an individual basis, and each person would be accepted and celebrated for who he or she is. We know that many factors contribute to our current inability to rely on a simple needs-drive-services model, and that the diagnosis is often both necessary and desirable for those who fit the criteria for an autism spectrum disorder (ASD).

Once our understanding of an individual leads to a diagnosis or points to the presence of ASD, often the on-going question becomes, "To Tell or not to Tell?" Who needs to know about the diagnosis? When does the individual himself or herself need to know?

The answer to this question is highly individual, and may change over time (perhaps again and again). Perhaps sharing some of my own story will help to provide some perspective on this issue.

My sons were each diagnosed at a very young age (3 and 2) with Asperger Syndrome. Both eventually ended up in regular classrooms, but with outside assistance (physical, occupational, and speech therapy, both privately and through the school system). When they were very young, their differences attracted attention. Classmates' parents wondered why they flapped their hands during gym class, why my two- year-old was speaking in complete sentences and singing songs while his classmates were mostly non- verbal, why they had difficulty answering questions even though they were highly verbal, why they seemed awkward when running and climbing, and why they irritated classmates by closing doors that their peers wanted open, by sitting too close to other children on the story rug, or by repeatedly reminding the teacher that it was time to start a new activity. At that stage, providing information about my sons' diagnosis enabled me to access support from other parents, provided direction and helpful strategies for the teachers and therapists working with my children, and created a more flexible and understanding environment for my everyone. Although it was not my intent, I was surprised to find that some other classmates were also diagnosed after I shared information about my children with parents and/or teachers!

As they got older, both my children and their classmates started noticing (and asking questions about) my sons' notable strengths as well as some of their differences. At that point (in my case, at ages 8 and 5), I told my sons about their diagnosis, and eventually went into their classrooms to provide more information to their classmates. (I have written an article about how I shared the diagnosis with my sons, which is available on our Articles page at www.thegraycenter.org.) The benefits to providing information at this stage were many; classmates became more tolerant and supportive, the teachers were able to be open about everyone's differences in the classroom, and my kids were able to discuss (with me and sometimes with others) some of the positives and negatives of their diagnosis and how it affects their lives. At this stage I regularly wrote letters to new teachers to introduce my children, including their strengths and challenges, and the unique attributes of the diagnosis that might affect their performance in the classroom. I also provided access to resources and to techniques that tended to work well with my kids.

Now (at ages 14 and 11), my sons are excelling independently in regular classrooms, without outside supports. They have chosen not to tell people about their diagnosis; a decision that I support. While the information is in their school files, and is occasionally discussed as part of relevant discussions at parent- teacher conferences, most of their classmates and their parents probably are unaware of the presence of a diagnosis of any sort.

As my kids get older and move toward high school, college, employment, and dating relationships, I anticipate that it will increasingly be up to them to be responsible for their own success in each of these areas, and consequently, to determine whether people need to know about their diagnosis. (I am aware that adolescents and adults who do not function as independently may continue to need parents or other care givers to intervene and provide assistance in this area).

Although there is no one answer that can work for everyone with regard to this issue, there are perhaps some guidelines that can be helpful. Some are related to my recent articles about getting a diagnosis, and person-first language:

1. Who needs to know? Primarily, it is important that people have this information if it will create a more supportive environment for the individual in question, and better enable him or her to reach their full potential. If needs are not being met and the individual is misunderstood without knowledge of the diagnosis, this would be an important time to increase understanding about ASD and how it affects him or her (and the social environment, whether it is a classroom, playground, home, or workplace), as well as resources and strategies that could help.

2. Does the individual know about his or her own diagnosis? Often, a good time to provide this information to the individual is when he or she begins to question differences (why they go to therapy, why others don't seem to want to play with them, why no one else knows the names of all the planets or the local train schedule, etc.) Be careful about setting up a situation where "everyone" knows about the diagnosis except the individual with the diagnosis!

3. How does the individual feel about the diagnosis? Although my children have chosen not to voluntarily disclose their diagnosis at this time, I know other individuals who are eager to share this information with others. Again, when needs are being met, it likely becomes more of a personal issue to be determined by the individual and his or her family.

4. Be sensitive to when and how the information is shared. If the individual is not aware of his or her diagnosis, or is not comfortable having it discussed in public, be sure to inform others only if necessary, and in a way that protects your own integrity and the thoughts and feelings of the person in question. In my family, the diagnosis has never been used as an excuse. It is sometimes an explanation for why some things are difficult (or easy), or why my sons need to work harder in some areas than others, but it doesn't excuse negative choices that they make. It should also not be used as the source of blame for all the negatives in a person's life. In the cases where this has happened, I've seen people who view their diagnosis very negatively, seeing it as the source of all the things they don't like about themselves or their lives. (We can help to avoid a situation like this by watching our own attitudes that we portray toward the diagnosis and the individual with the diagnosis.)

Again, this is a highly individual topic. Everyone likely has his or her own guidelines for disclosing a diagnosis to other people. If you'd like to share information that might be helpful to others, feel free to do so on our SUN News blog at http://www.graycenter.wordpress.com.

Thank you all for your continued work in promoting social understanding around the world!

Laurel Hoekman, Executive Director
The Gray Center for Social Learning and Understanding
www.thegraycenter.org

Question: How Can a Family with an Autistic Child Overcome Isolation?

An About.Com user asks: I always imagined that having a child would mean joining the PTA, coaching a team, being a class parent. But now that I have an autistic child I am incredibly isolated. I spend all my time either researching therapies or taking my child to therapists. Can you suggest some ways to reconnect with the "real" world?

Bill provides for lifespan autism services and awareness

Members of the U.S. House of Representatives introduced a companion to the Helping HANDS for Autism Act this week.

The Helping HANDS for Autism Act (HR 6282) is a three-part legislative package designed to support families dealing with autism spectrum disorders, increase awareness among first responders and public safety officials and provide housing options and services for adults with autism. It was introduced by Reps. Kay Granger (R-TX), Jim McGovern (D-MA), Chris Smith (R-NJ), Mike Doyle (D-PA), Dan Burton (R- IN) and Ruben Hinojosa (D-TX). The bill is a companion to S 2950, introduced in the Senate last April.

An estimated 30 million people in the world have an autism spectrum disorder, 1.5 million in America alone. Every day in America, 60 families learn their child has autism. These families face challenges of care, support, education, financial hardship and medical and health care issues that make autism a national public health issue. Though there is no cure, autism is treatable and individuals with autism have tremendous potential. What the Bill Does:

1. Creates a grant program to provide "autism navigator" services to help families navigate the web of services and care they need. Navigators will help guide families to current health, education, housing and social services that are often available to individuals on the autism spectrum. Too often, families feel overwhelmed after diagnosis and often lost as to where to turn for help. The program will help connect families to important treatment options soon after diagnosis, help families identify education options, and help coordinate individuals' care and community support.

2. Provides for the development, demonstration and dissemination of a standard curriculum for the training of first responders (police, fire departments, emergency medical technicians and other volunteers) in assisting individuals with autism and other cognitive behavioral disabilities. It provides grants to states and local governments to support training of first responders. People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001. That is why training is so important. Something as simple as first responders turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter.

3. Creates a HUD task force comprised of appropriate national and state autism advocacy groups, community-based organizations and parents who are charged with developing a housing demonstration grant program for adults with autism. The goal of the grant program is to provide individualized housing and services to adults with autism spectrum disorders.

Greetings Valerie,
I had the good fortune to meet you when you toured our facility some months ago.

I am seeking a theatre group in North County for a 22 year old young man with autism. If anyone has any leads, I would appreciate them.

Thank you,
Greg Snaer
Art Enables Coordinator
251 Airport Road · Oceanside, CA 92058
760-721-1706 / 760-721-9872 fax
760-801-4992 cell
www.teriinc.org

Hi Valerie,
Could you please help me post this message?
I am look for a good educational consultant for my son in poway school district. I heard Dee Dee is good, but I can not get hold of her. I wonder if anyone knows other good educational consultants. Please e-mail me at: mgan930@yahoo.com.
Thanks.
Michelle

Hi Valerie,
I had emailed you about 6 years ago looking for extra part time work in working with children on the Autism Spectrum and you connected me a with a wonderful family on Coronado Island. I am currently looking for work either tutoring, supervising, consulting, or even babysitting. I was a Special Education teacher for 8 years working with children on the Autism Spectrum and I have a Masters degree in Marriage and Family Therapy. I am trained in a variety of Autism methodologies and have my National Board Teacher Certification. I am available all day any day of the week.

Do you know of any families who could use my help?
Thank you,
Andrea

"Ryno" is a 50-something ex-sysadmin, by his own account "burned out and living on disability" in rural Australia.

He loved the tech parts of being a system administrator, and he was good at them. But the interpersonal interactions that went along with the position - the hearty backslaps from random users, the impromptu meetings - were literally unbearable for Ryno.

"I can make your systems efficient and lower your downtime," he says. "I cannot make your users happy."

Most Heartwarming Fashion Event to Benefit St. Madeleine Sophie's Center

St. Madeleine Sophie's Center (SMSC) will be wrapping up the summer season in style with our 31st annual Haute with Heart '08 Fashion Show Fundraiser/Luncheon. Whether your fashion tastes tend toward classic, tailored, casual, sophisticated, or your signature look is one of timeless appeal, you'll see what's hot in haute and get a sneak peek at California Chic fashions. Over 700 guests are expected to attend the event being presented by Hai Elite, Carlton Hair, Sempra Energy, Sycuan Resort & Casino and Leadership Sponsor; San Diego National Bank. The popular fashion show, produced by KUSI's style guy, Leonard Simpson of Fashion Forward, will feature guest speaker Carol LeBeau, 10 News/ABC with runway models including San Diego community leaders and the students of St. Madeleine's in the sprit of this 'couture for a cause' event.