Drug in the Works for Fragile X

Fragile X Syndrome is the single most common known inherited cause for mental disabilities. According to the National Fragile X Foundation, the genetic condition is responsible for between 2% and 6% of all autism diagnoses in children.

It is very encouraging, then, that a small trial conducted by the Swiss company Novartis on an experimental drug resulted in "substantial improvements in the behaviors associated with retardation and autism in people with fragile X syndrome." The drug is many years away from commercial production, but some scientists have speculated that when it does, it may help children on the spectrum who do not have Fragile X.

You can read more about the study, and what high-profile medical officials have to say about it, in this NY Times article: http://www.nytimes.com/2010/04/30/health/research/30fragile.html.

Autism Speaks 400

On Sunday, May 16th, tune in for the annual NASCAR Autism Speaks 400! The Autism Speaks 400 race, presented by Hershey's Milk & Milkshakes, is an annual race that takes place at the Dover Speedway in Delaware. It is part of the NASCAR Sprint Cup Series and seeks to increase awareness and funds for autism. During the race, Dover International Speedway will feature Autism Speaks' puzzle piece logo on the track's retaining walls, special signage and on limited-edition souvenir merchandise.

In a January press release, Mark Roithmayr, president of Autism Speaks, said of the event: "Autism Speaks is honored to again work with Dover International Speedway, and now Hershey's Milk & Milkshakes, to raise awareness and funds for our cause...We can't wait for the green flag at Dover on May 16."

To read more about the event, see this article on the Autism Speaks website: http://www.autismspeaks.org/press/dover_2010.php.

Dr. Stanley Greenspan

Dr. Stanley Greenspan, an author and autism expert, passed away yesterday.

Greenspan was the former director of the National Institute of Mental Health's Clinical Infant Development Program and Mental Health Study Center in Bethesda, MD. He created the highly popular Developmental, Individual Differences, Relationship-based model (DIR) method for children and infants, which includes the Floortime training series. In 1981, he received the Ittleson Prize, the American Psychiatric Association's award for child psychiatry research.

To read more about Greenspan's accomplishments, visit the Examiner for a full tribute article. To purchase one of his many books and published articles, visit Greenspan's official site at http://stanleygreenspan.com/. The CeDIR library also has copies of the Floortime series in circulation; email us for information on how to check them out.

Tonight on PBS: The Vaccine War

Tonight, at 9pm Eastern Time, PBS will air the documentary The Vaccine War as part of the series, FRONTLINE. The show will cover both sides of the vaccination controversy, interviewing parents, authors and advocates with concerns over the practice of inoculation, and scientists and public health officials who worry about the spread of diseases whose deadliness has fallen out of the public memory.

In a press release, PBS writes: "FRONTLINE...examines the increasingly bitter debate between the public health establishment and a formidable populist coalition of parents, celebrities, politicians and activists who are armed with the latest social media tools...and are determined to resist pressure from the medical and public health establishments to vaccinate, despite established scientific consensus about vaccine safety."

You can check for local listings by visiting pbs.org and clicking "TV Schedules." The site will direct you to your local station. For more information and to watch a trailer for the show, visit http://www.pbs.org/wgbh/pages/frontline/vaccines/.

Bloomington Council for Community Accessibility: Meeting Tonight!

The regular monthly meeting of the City of Bloomington Council for Community Accessibility (CCA) will be held today from 4:00 – 5:30 pm at City Hall in the McCloskey Conference Room (#135). The CCA is a volunteer group made up of persons with disabilities, family members, or other local citizens, that advocates for the interests of people with disabilities. The group promotes awareness of the challenges faced by people with disabilities, and works to develop solutions to problems of accessibility in the community.

The meeting is open to all who are interested in making Bloomington a more accessible city. For more information, contact Craig Brenner at brennerc@bloomington.in.gov. For more information about the CCA and their objectives, visit their webpage at http://bloomington.in.gov/documents/viewDocument.php?document_id=4246.

Take Control of Asperger's Syndrome

Take control of Asperger's syndrome: the official strategy guide for teens with Asperger's syndrome and nonverbal learning disorder by Janet Price and Jennifer Engel Fisher is a book for teenagers with Asperger's or Nonverbal Learning Disorder. The authors provide tips on understanding the condition, self-advocacy, succeeding in school, maintaining good hygiene and making friends. The book includes sample charts for goal-orienting and input from teenagers with AS and NLD from across the United States.

Interested in this book? Indiana resident? Email us!

Not an Indiana resident? Find this book at your local library through WorldCat.

Children with High-Functioning Autism: A Parent's Guide

Children with high-functioning autism: a parent's guide is written by Claire E. Hughes-Lynch, PhD, associate professor of special education at the College of Coastal Georgia. Hughes-Lynch aids parents coping with a new diagnosis of autism to seek proper treatment and help their children "develop into his or her full potential." She provides an overview of conditions that often accompany autism, such as learning or language difficulties, and practical tips to choose a therapist or break the news to family and friends. Every aspect of the child's life is addressed, from making an informed choice about public or home schooling to encouraging cooperation between siblings.

Interested in this book? Indiana resident? Email us!

Not an Indiana resident? Find this book at your local library through WorldCat.

Parenting an Adult with Autism

Yesterday in the NY Times, guest writer Laura Schumaker discussed parenting her adult son with autism. Schumaker, the author of the book A Regular Guy: Growing Up with Autism narrates a story of her 23-year-old's monthly visit home on Super Bowl weekend.

For more personal stories by parents of children with autism, check out these books from the CeDIR library:

Gravity pulls you in

Matthew's enigma: A father's portrait of his autistic son

The boy who loved windows : opening the heart and mind of a child threatened with autism

A child's journey out of autism: one family's story of living in hope and finding a cure

Bounce for Autism

This Thursday, April 22nd, the Autism Society and the Pump It Up amusement chain have teamed up for a nationwide event to raise funds and spread autism awareness: Bounce for Autism.

The event, which will take place at Pump It Ups in 35 states, is a chance for children to "bounce, slide, climb and jump" while the Autism Society collects funds to support those affected by ASDs. Bounce for Autism will take place at two venues in Indiana: Evansville (http://www.pumpitupparty.com/in/evansville/home-p1q22.htm) and Indianapolis (http://www.pumpitupparty.com/IN/Indianapolis/home-p1q100052.htm). You can support the event by donating to the cause or just showing up to get some exercise and have fun.

For more information or to find locations in other states, visit the official Pump It Up Bounce for Autism page at http://www.pumpitupparty.com/BounceForAutism_LandingPage.aspx.

"Picky Eating" and Autism

Registered Dietician Denise Reynolds published an article today reviewing the findings of several studies over the past year that examined the nutritional habits of children with autism. Here were some of her conclusions:

• Children with autism tend to limit their intake to fewer than 20 different foods and are reluctant to try new foods
• Children with autism may be picky eaters for reasons other than flavor preferences, such as having an aversion to foods touching each other on a plate, having a desire for a specific eating utensil, or performing particular rituals at mealtimes
• Fruits and vegetables are likely to be eaten in lower amounts than recommended, and children with autism are more likely than typically developing children to not meet requirements for vitamins A, C, D and minerals zinc and calcium

You can read the original article here: http://www.emaxhealth.com/1506/picky-eating-common-autistic-children-may-be-nutritional-risk.html. To make sure your children are getting the nutrients they need, check out some of these resources from the CeDIR library:

The Everything guide to cooking for children with autism: from everyday meals to holiday treats: 200 tasty recipes your child will love to eat

Special-needs kids eat right: strategies to help kids on the autism spectrum focus, learn, and thrive

Just take a bite: easy, effective answers to food aversions and eating challenges

Does your child love to swing? Wear safety glasses

An article in yesterday's New York Times highlighted a study from the Journal of the American Association for Pediatric Ophthalmology and Strabismus: "Recurrent corneal metallic foreign bodies in children
with autism spectrum disorders".

According to the study, one source of eye irritants in children with autism can come from hours of therapeutic swinging. "Wear and tear causes small metal fragments to peel from the suspension apparatus and fall into children’s eyes," the article reports. In order to counter the falling metal dust, the study authors suggest having your child wear safety glasses while swinging, or wrapping the chains or hooks with cloth.

You can read the article here: http://www.nytimes.com/2010/04/20/health/research/20haza.html.

See the World Through My Eyes

The Northwest Indiana chapter of the National Autism Association has put together an exhibit of photographs by Evansville photographer Nikki Davis of children with autism or other disabilities. Lisa Fox, the president of the association, said in an interview with the NWI Times that the purpose of the exhibit was to counter the stigma of misery surrounding families of children with autism.

"A lot of people automatically assume that an autism diagnosis is absolutely devastating and devastates the family...but it's not a death sentence. My main focus is to get people past the label and look at the child. They may have autism and they may have challenging behaviors and they may have peculiarities, but they're still kids. They still like to play...They still want to have friends and be loved by their family."

The exhibit is open at the South Shore Arts in Crown Point, IN, until May 15th. See below for a map to the venue:


View Larger Map

For more information about the Northwest Indiana Chapter, visit http://northwestindianaautism.com/index.php.

Easter Seals Crossroads Summer Day Camps

The Easter Seals Crossroads of Indianapolis hosts CampAbility every year for young children with disabilities. This year, they have added two more options for children and adolescents with autism or developmental delays: the Life Skills Camps and PALSS.

The Life Skills Camps are designed for adolescents, aged 13-18, to master skills such as cooking, cleaning, laundry, money handling and shopping. Two camp levels are offered. Introductory classes only meet on Wednesdays for six consecutive weeks and is lead by an occupational therapist and a speech language pathologist. Intermediate meets Monday through Friday from 9am-3pm for the week of July 26-30, is led by an occupational therapist and a special education teacher, and will also incorporate a pre-driving component. If you register before May 14th, each session costs $295; after that point registration is $325 per teen.

The PALSS Club is designed for a younger audience--children aged 6-9. "PALSS" stands for Practice And Learn Social Skills, and the daily sessions will cover concepts like personal space, body language, talking to peers, team work and sportsmanship. The camps meet once a week on either Wednesdays or Thursdays, depending which 6-week session you sign up for. A mandatory Meet & Greet on either May 5th or May 10th will allow parents to meet the camp leaders and determine whether their children would benefit from PALSS.

For more information on either of these programs, contact Beth at 317-466-1000 x2501. You can also email us at cedir@indiana.edu to receive an electronic copy of the flyers.

Living with Autism Radio Interviews

On a recent segment of the talk-show program Life, Love, and Health, Christopher Springmann interviewed two experts on autism: Scott Fargo of the Indianapolis Easter Seals Crossroads, and Cathy Pratt of the IRCA. In the 8-minute clip, Scott and Cathy discuss the study Living with Autism, in which parents of children with autism and parents of children of typically developing children were surveyed about their quality of life and concerns for the future.

You can listen to the interview on Womens Radio: http://www.womensradio.com/articles/Minimally-Invasive-Base-Of-The-Skull-Surgery,-Living-With-Autism,-Easter-Seals/4831.html. The clip of interest begins around minute 22 of the program; you can scroll the bar on the Flash player directly to that point.

ITAC Webinar: What happens after the K-12 years?

Next Tuesday, April 20th, the IIDC's own Cathy Pratt will moderate a webinar for the Association of University Centers on Disability entitled: "What happens after the K-12 years? Transition and Postsecondary Options for Youth with Autism Spectrum Disorders."

The webinar will feature guests Dr. Peter Gerhardt, the President and Chair of the Scientific Council Organization for Autism Research, and John Thomas, the Director of Training for the Autism Society of North Carolina. An open question and answer session will follow the presentations.

You can register for the webinar by clicking on the secure link on this site: http://www.aucd.org/template/event.cfm?event_id=2324.

The IAN Project

IAN is the "Interactive Autism Network," an online community for families of individuals with autism and researchers sponsored by Autism Speaks and the Kennedy Krieger Institute. The organization maintains the largest database for autism-related research in the United States.

By joining the IAN Community (http://www.iancommunity.org/), users gain access to the latest sociological research and the opportunity to contribute to ongoing studies. Children and adults diagnosed with autism, and their loved ones, are encouraged to provide basic demographic information and fill out questionnaires. You can see the statistics IAN has already amassed here: http://dashboard.ianexchange.org/IANStats.aspx, and add to the growing body of knowledge through this page: http://www.iancommunity.org/cs/ian_research/overview.

Quirky, Yes. Hopless, No.

Quirky, yes--hopeless, no : practical tips to help your child with Asperger's syndrome be more socially accepted is a practical paperback by Cynthia La Brie Norall, PhD, a practitioner and mother of a teenage son with Asperger's Syndrome. In this book, she outlines the techniques used in the Friends' Club, which she founded to encourage social skills in children and teens with Asperger's. Each chapter addresses a particular skill or problem, such as Team Work, Perfectionism, Reading Minds and Faces, Peer Pressure, or Losing Gracefully. Norall is a proponent of writing social stories and also provides a list of web resource and further reading at the end.

Interested in this book? Indiana resident? Email us!

Not an Indiana resident? Find this book at your local library through WorldCat.

Monroe County Library Books on Autism

Exhausted CeDIR's autism-related resources? The Monroe County Public Library also maintains a list of books in their collection for children with ASDs. Among their titles are some that CeDIR doesn't have in circulation, such as:

-Flight of a Dove

-I love my brother! A preschooler's view of living with a brother who has autism

-The Truth Out There

You can view the full list at http://www.monroe.lib.in.us/childrens/booklists/disabilities_cognitive.html#autism. The webpage also contains books on other disabilities, including Asperger's Syndrome and ADHD.

Dad’s in Heaven With Nixon

At 8:30 tonight on Showtime, don't miss the movie Dad's in Heaven with Nixon. Filmmaker Tom Murray documents the life of his brother, Chris, who was diagnosed with autism in an unforgiving era. Interviews with his mother and siblings bring to light the inner struggle of the brothers' father, Thomas Sr., who "just couldn’t wrap his mind around the fact that he had a neurologically damaged child."

Chris, now 50 years old, used his unique perspective to grow into a successful artist sponsored by KS Art. He is known for his depiction of Manhattan buildings in meticulously rendered two-dimensional landscapes. To see samples of his work, and view a trailer for the documentary, visit http://www.inheavenmovie.com/.

Patient Voices: Autism

The New York Times website runs a feature called Patient Voices, in which people with disabilities or certain illnesses speak about their lives and struggles. This month, the feature highlights autism. The site has posted six recorded interviews with parents and individuals across a broad range of ages, including Judy Endow, the author of the movie The Power of Words and the kit Outsmarting Explosive Behavior.

You can listen to the interviews here: http://www.nytimes.com/interactive/2010/04/02/health/healthguide/TE_autism.html. Macromedia Flash is required to run the program. Also check out some of these other recent NY Times articles on autism:

-Dealing with the Financial Burden of Autism

-Both Parents' Ages Linked to Autism Risk

-Do Toxins Cause Autism?

Sensory Friendly Films: How to Train Your Dragon

On April 10th at 10am, two movie theaters in Indiana will participate in a national effort by the Autism Society of America to offer Sensory Friendly Films to families of children with autism or sensory processing disorders. The theaters will show How to Train Your Dragon with the lights on and sound lowered. Parents can bring GFCF or allergy-free snacks, and children are free to "get up and dance, walk, shout or sing" without interference. The two theaters are:

AMC Greenwood 14
461 S. Greenwood Park Dr., Greenwood, Ind. 46142

AMC Castleton Square 14
6020 E. 82nd St., Indianapolis, Ind. 46250

For more locations across the country, visit http://www.autism-society.org/site/PageServer?pagename=sensoryfilms. You can also sign up for the Autism Society's newsletter here to receive notifications about future Sensory Friendly Film events.

Teaching Social Communication to Children with Autism

Teaching social communication to children with autism: a manual for parents by Brooke Ingersoll and Anna Dvortcsak is a user-friendly guide and workbook for parents of toddler-through-elementary aged children on the spectrum. The authors isolate common situations and behaviors at home, and give concise recommendations on how to react to best shape a child's social skills. They also encourage self-reflection by asking questions at the end of each section, which helps readers pinpoint patterns in their routines and focus on the areas that need improvement.

Interested in this book? Indiana resident? Email us!

Not an Indiana resident? Find this book at your local library through WorldCat.