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Notes published by The Emerald Coast Autism Society
BEFORE TALKING WITH YOUR CHILD
Assess yourself.
- What are your values?
- What are the rules you try to live by?
- What are you afraid of?
- What is your motivation for explaining the diagnosis to your child?
- What is your motivation for NOT explaining the diagnosis to your child?
Assess your child.
- Is he/she developmentally ready to understand the diagnosis?
- How much is he/she able to understand?
- Is your child already experiencing negative consequences?
- What does your child already know?
TALKING WITH YOUR CHILD
Be as positive as possible.
Pick a “good” day.
Remove distractions or select a time with no interruptions/distractions.
Talk about what your child is already experiencing and start there.
- The positives.
- The negatives.
Emphasize that they are not alone.
- Use books that describe the characteristics of ASD, if needed/desired.
- Let them know about others who share their diagnosis.
Emphasize that you (and the rest of the family) are always there to help.
- Celebrate the good times.
- Assist with the challenges.
- Learn together.
- Answer questions.
Keep in mind that you don’t have to explain everything at once.
AFTER TALKING WITH YOUR CHILD
Take care of yourself.
Enjoy the good days and celebrate the successes with your child.
Help your child establish appropriate goals.
Be ready to assist with the challenges with encouragement and support.
Keep learning.
Be ready to answer their questions. |
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Posted by Dana Hollenbeck on August 5, 2010
ASA intern, Dana Hollenbeck, has continued her search through the city to find interesting and tasty options for those on a gluten free diet. She reported on Mellow Mushroom in an earlier post and here are more of her findings...
Searching for gluten free items in restaurants can be somewhat of a challenge. There are givens that you should avoid such as sandwiches, pasta, and cookies. That is until now. I have already told you about the gluten free pizza dough offered at Mellow Mushroom, but now I give you sandwiches, pasta and cookies!
 Jason’s Deli has carried gluten free items on their menus in the past but is now offering gluten free bread! Udi’s Gluten Free bread is a popular item among those who are gluten free and is exactly what Jason’s Deli now offers. They take extreme care in making sure that there is no cross contamination. It does take a little longer to get your food, but that is because of the care they are taking. After talking to the manager at one of the locations in Birmingham, I was let in on a little secret; they are hoping to start carrying gluten free ice cream cones as well!
 Another hot gluten-free spot is Nothing but Noodles. They do not have a specific gluten free menu, but are hoping to have some made very soon. The manager at Nothing but Noodles has been the most helpful manager I have dealt with in my search for gluten restaurant items. He is always happy to help and makes sure that your food is prepared properly.
 And for dessert, you ask? Well, look no further than your neighborhood Starbucks. Dr. Lucy’s cookies are gluten free, allergy friendly and vegan. They are now available in Starbucks locations nationwide, as well as in organic stores across the country. These cookies are a nice treat to satisfy any sweettooth!
Please feel free to contact the ASA at
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with any questions or suggestions about Gluten Free options. |
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Posted by Jessica Charlton on August 31, 2010
UAB Professor Rajesh Kana, Ph.D., in the UAB Department of Psychology, has received a $210,000 grant from Lindamood-Bell Learning Processes to study the effectiveness of the company's new intervention program designed to help children with autism improve their language comprehension skills. During the year-long study, Kana will use functional Magnetic Resonance Imaging to examine changes in brain function in children with autism before and after the intervention is administered.
Media Contact: Gail Short, 205-934-8931,
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Posted by Jessica Charlton on July 22, 2010
As mentioned in a previous post, ASA is truly a grassroots organization, and empowering community leaders is a cornerstone to accomplishing its mission. This weekend, Networking Group Leaders from around the state will come together to share ideas and to gain new information about education and advocacy at the state and local levels.
Thank you to the many Networking Group Leaders who have committed their time and energy to strengthening communities and providing support to families and individuals affected by autism spectrum disorders. We appreciate you all and look forward to seeing you this weekend! Contact Anna Bloom (
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) for more information!
Intern Dana Hollenbeck prepares for the Networking Group Leaders Workshop
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Autism Insurance Reform in Alabama
Published on November 18, 2011 by Bama Hager, Parent and Autism Advocate
Autism Society of Alabama(ASA) is leading a campaign for Autism Insurance Reform and to stop discrimination by insurance companies against families living with Autism Spectrum Disorder (ASD). Change is needed to improve private and public insurance coverage for ASD. ASA will advocate for a bill to be introduced during the 2012 Alabama legislative session to reform insurance coverage for Autism Spectrum Disorder services.
We need a Capitol 100 group to help us meet our goal. The Capitol 100 in Alabama is a group of citizens who agree to spend one day in Montgomery at the State House while the legislature is in session. A member of the Capitol 100 may choose their volunteer day on a Tuesday or Thursday between February 7, 2012 and May 17, 2012. On your chosen day, you will visit the State House in Montgomery and visit legislators. Autism Society of Alabama along with Autism Votes, an initiative of Autism Speaks, will train you for this service. No prior knowledge of state government or advocating to legislators is needed. Anyone can volunteer. You may serve with a friend or serve alone on your day. You do not have to be a family member of a person with Autism Spectrum Disorder (ASD). If you are interested in learning more about being a part of The Capitol 100 and making critical changes in the health care insurance reimbursement for ASD services, please send your name, phone number and email address to Lisa Riley at
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, Bama Hager at
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or Anna McConnell at
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. Thanks everyone. We can make a difference for our loved ones living on the autism spectrum.
For further information or to volunteer with the Autism Insurance Reform Campaign contact:
Parent and Autism Advocate, Lisa Riley at
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Parent and Autism Advocate, Bama Hager at
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Autism Society Program Manager, Anna McConnell at
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Posted by Bama Hager, PhD on August 23, 2010
Bama Hager is the Autism Society of Alabama Policy Advisor, as well as a parent a child on the autism spectrum. The following is an excerpt from an article Bama wrote for Montgomery Parent Magazine. Purchase the next issue to read the entire article.
This article focuses on some of the preliminary tasks involved in parenting a child with ASD. My son was diagnosed with autism eight years ago when he was two years-old. I also parent a typically developing daughter. I think of parenting on the Autism Spectrum as an extreme form of parenting much like the popular extreme sports are a form of traditional sports.
Consistency and Predictability. As parenting on the Autism Spectrum may be an intensified version of parenting a child who is neurotypical, guidelines for effective parenting of both populations are similar. All children thrive when they develop in an environment where they are respected, regarded and loved. When the environment is consistent and predictable, children can explore, create, develop and learn. Parents of children with ASD may benefit from evaluating and monitoring the home environment in regards to consistent consequences and predictable routines.
Pace and Protect Yourself. You are your child’s greatest asset. Parents may benefit from remembering to pace and protect themselves. Guard your time and protect your resources. Parenting can be intense and draining. It is important to take a break and rest. Many parents realize that when they are refreshed and rested, they notice the positives of parenting more readily. Parenting a child with ASD is very similar in this regard. Parents of children with ASD may notice gains more easily if they are relaxed and rested. It is often hard to take care of yourself as a caretaker of a child with Autism Spectrum Disorder, but it is essential to successful parenting.
Avoid Therapy Fatigue. There are so many therapy options for children with ASD, that the choices for treatments can seem overwhelming to many parents. Although there have been great strides in the development of therapies, there is no one best practices program that works for everyone. So, parents have to pick and choose their therapies. This can lead to a kind of “therapy fatigue,” when parents can feel tremendous pressure to provide everything available for their child in need. It can’t be done. No family can simultaneously attempt all available therapies. Parents may benefit from prioritizing needs, then seeking treatment for the most urgent need. Many therapies will focus on more than one symptom of ASD, but it is often a good approach to match the child’s greatest need with the primary focus of therapy.
Seek Support. Join the statewide advocacy group that represents your child’s disability. Joining the Autism Society of Alabama by going to their website was my first step to advocating for my child. I joined a group that could work on advocacy issues in my county and my state while I focused on my son’s therapy and school programs. It also gave me an opportunity to network with other parents and learn about their successes. |
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Posted by Bama Hager, PhD on July 7, 2010
For students with Autism, Asperger’s Syndrome, PDD-NOS and ADHD, a picture schedule or social story or both is a great preparation for school. Even if you think that your child may not need a visual or written aid to prepare for school, I think the aids can be very comforting and helpful. A social story is a story that you or you and your child write about returning to school. It includes the specifics of your child’s transition experience. So, it may start something like this; I will be going to City Elementary School and will be in Mrs. Smith’s class. There will be some boys and girls that I know in my class. There will be some boys and girls that I will not know in my class. We will start the day doing 'example activity.' I will go to the lunchroom to eat lunch or I will go to the resource room to eat lunch. Whatever specifics you can find out from your child’s teacher about the day can be used in the story.
For younger students or students who prefer pictures, a picture schedule is often helpful. A parent might take a picture of the school, entrance, classroom, lunchroom, gym, playground, etc. to use in discussing the first day of school. Schools are usually fully staffed and open in the days immediately prior to the start of the semester. This might be an opportunity for parents to enter the school and with permission from the administration, take photos for a picture schedule. A photo of the teacher would be great if available. Previous yearbooks are often helpful in this regard. I usually take my son to the school in the days leading up to the start of school to walk through the building and ideally see the classroom.
In following articles, I will include websites that are nice introductions to visual aids like social stories and picture schedules for returning to school. |
Are More Children Really Developing ASD Now Than Before?
The collective gasp you heard coming from the autism community last month was a response to the American Journal of Psychiatry's publication of a study of autism prevalence in South Korea. The study, which focused on the Ilsan district of Goyang City, South Korea, found an autism rate of 2.64 percent among 7- to 12-year-olds. That is more than two and a half times the U.S. rate of approximately 1 percent.
I interviewed one of the study's lead authors, Roy Richard Grinker, by email. Grinker is a Professor of Anthropology at George Washington University, the father of a daughter on the autism spectrum, and author of "Unstrange Minds," a history and cross-cultural examination of autism. (Full disclosure: Grinker also appears in my documentary, "Loving Lampposts: Living Autistic."
Grinker says that the study shows "that autism is more common than we think, and that claim is supported by the use of a different method of estimating prevalence."
If this is true, then it's very big news. After all, when prevalence rates rise in the U.S., people often respond, "Why are there so many more autistic people than there used to be?" This response is so common that many people now believe that there is an epidemic of autism.
But Grinker is suggesting that the real question we should ask when see a rate like 2.64 percent is, "How did the researchers look for autism?" In other words, increased prevalence does not necessarily mean that there is more autism than there used to be. Instead, it may mean that we are looking for autism more than we used to. To understand why this might be true, you have to understand what makes the Korea study different.
In the U.S., the Centers for Disease Control estimate the prevalence of autism spectrum disorders (ASD) by examining health and/or educational records. Grinker calls these studies "superb," but he also points out that the CDC's approach "meant that researchers were counting only those children who appeared in records" (the CDC itself acknowledges this point in a New York Times article about the Korea study). "What would we find," Grinker wondered, "if we screened all children in a population for ASD?"
Grinker worked with a team of autism experts that included lead researcher Dr. Young-Shin Kim, a child psychiatrist and epidemiologist at the Yale Child Study Center. Together, they designed a study that would measure the prevalence of autism among the entire elementary school population of the Ilsan district.
That total population turned out to include 36,592 children in participating mainstream schools and 294 listed in Islan's Disability Registry (the latter group was identified as having a high probability of having ASD). As a first step, all parents were asked to complete a preliminary 27-item questionnaire that assessed their children for possible symptoms of and behaviors associated with autism.
To lay the groundwork for this step, Grinker and the team engaged in "extensive community outreach, educational sessions with teachers, interviews and focus groups." Grinker says, "We learned how to talk about autism in a way that didn't frighten people away from our study." It may seem strange to have an anthropologist on a team of scientists performing epidemiological research, but Grinker argues, "This kind of approach, which considers culture as an important aspect of medical and psychological research, can be useful anywhere, including the U.S."
Ultimately, parents of 23,337 children completed the questionnaire. The team made extensive efforts to contact the parents of children who screened positive for ASD and to invite the children for multi-hour evaluations with the gold-standard diagnostic instruments, validated in the Korean language. Two clinical teams made final diagnoses, and each team included a Korean child psychiatrist trained in both Korea and the U.S. The final 2.64-percent prevalence estimate was made up of .75 percent from the high-probability group and 1.89 percent from regular schools. (The authors emphasize that their results have not been replicated, and certain factors may have caused them to overestimate or underestimate the prevalence rate.)
Grinker suggests that the surprisingly high percentage of children with ASD in mainstream classrooms may be partially explained by the culture of Korean schools. He notes, "The schools emphasize structure and routine within the classroom, learning by rote memory, and few transitions or alterations in daily schedules." You couldn't ask for a better classroom for an autistic child. Nevertheless, Grinker emphasizes, "The team would never have found these kids if they weren't suffering, or didn't have significant functional impairments." Given the rigor of the study and the expertise of the team, it seems likely that these children were accurately diagnosed.
Grinker points out that a total population study is more tedious, costly and time-consuming than the CDC's records-based approach. But the results are instructive.
The study reminds us that the rate of any condition depends in part on how we measure it. When we actively look for autism, we find more of it simply because we are looking.
Grinker has been running a small experiment when he tells people about the study. To some, he says that the rate is 2.64 percent, and they respond, "Shocking!" To others, he says, "'The prevalence is 26.4 per 1,000," which is of course 2.64 percent, and people respond by saying, "That doesn't sound high to me." Is a prevalence of 2.64 percent high? As the Korea study shows, it all depends on what rate you were expecting.
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Posted by Bama Hager, PhD on July 8, 2010
A countdown calendar to first school day is often a great help. Any calendar with blank squares for days can be used to count down 10 more days until school, 9 more days until school, 8 more days, etc. Older students often benefit from organized and planned supplies for each class. So notebooks, books and folders might be color coded or coded with a picture so that the student can effectively and efficiently find materials for class and home.
These are some of the steps that I take to prepare for the imminent school year. No two students with ASD are exactly alike. So, some of the information may be helpful and some may not. There is further information on this topic at the ASA website at www.autism-alabama.org.
Helpful websites and resources:
Social Story example:
http://wwww.examiner.com
Coloring pages for students who prefer pictures:
http://www.associatedcontent.com
The Alabama Disabilities Advocacy Program publishes an annual book for parents of children with developmental disabilities. The manual is a resource regarding special education in Alabama. The book Special Education in Alabama A Right Not a Favor can be ordered free of charge by any parent by emailing
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or calling 1-800-826-1675 |
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Publishd on August 5, 2011 by the FBI - View article here
"You're shopping at the mall with your children when one of them suddenly disappears. A quick search of the nearby area is unsuccessful. What do you do?
Now there's a free new tool from the FBI that can help. Our just launched Child ID app—the first mobile application created by the FBI—provides a convenient place to electronically store photos and vital information about your children so that it’s literally right at hand if you need it. You can show the pictures and provide physical identifiers such as height and weight to security or police officers on the spot. Using a special tab on the app, you can also quickly and easily e-mail the information to authorities with a few clicks.
The app also includes tips on keeping children safe as well as specific guidance on what to do in those first few crucial hours after a child goes missing.
We encourage you to share the word about this app with family and friends, especially during upcoming activities in your communities to raise awareness on crime and drug prevention. For its part, the FBI is working to publicize the app with the American Football Coaches Association (AFCA)—its long-time partner in the National Child Identification Program, which provides a physical kit to gather your child’s pictures, fingerprints, personal characteristics, and even DNA to keep with you in case of emergency. The AFCA is producing a public service announcement about the app and will spread the word at various football games during the upcoming season.
Right now, the Child ID app is only available for use on iPhones and can only be downloaded for free from the App Store on iTunes, but we plan to expand this tool to other types of mobile devices in the near future. And we’ll be adding new features—including the ability to upload other photos stored on your smart phone—in the coming weeks and months.
An important note: the FBI (and iTunes for that matter) is not collecting or storing any photos or information that you enter in the app. All data resides solely on your mobile device unless you need to send it to authorities. Please read your mobile provider’s terms of service for information about the security of applications stored on your device.
Put your child’s safety in your own hands. Download the FBI’s Child ID app today."
Resources:
- FBI Child ID app on iTunes
- FBI's Crimes Against Children website
- FBI Widgets |
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