African-American Children With Autism; News For Siblings; Year-Round Recreation Now Available; The Value of Music

"It is important to emphasize the enormous range of autism spectrum disorders and the many differences that exist between children on the spectrum. It is important that we not lose sight of the individual in our search to treat autism...The goal is to help children enter adulthood with capacities for social and personal self-sufficiency." Fred R. Volkmar, M.Ed., Yale University School of Medicine.

Did you know that African-American children are frequently diagnosed too late? In addition, African-American children are also misdiagnosed too often. That's why it's with great pleasure we put a spotlight on three organizations devoted to African-American individuals with autism.

• African American Autism Support Services of Arizona was founded "to connect, support, educate and equip the African American community in becoming involved in the advocacy, education and research efforts pertaining to Autism and the Autism Spectrum locally and nationally." (from their Mission Statement). Anyone interested can contact them at:  http://www.africanamericanautismofaz.org/.
• The Color of Autism Foundation, located in Mableton, GA, is committed in raising autism awareness in minorities. They point out correctly that not only are African American children with autism misdiagnosed more frequently, but there are very few clinical studies involving African American children with autism. We urge you also support this foundation. They can be reached at: http://www.thecolorofautism.org/
• Autism in Black focuses on the cultural, medical, and educational issues facing African American children with autism. Visit them at: http://www.autisminblack.com/

In 2010, Washington University School of Medicine published, "Brief Report: Under-repesentation of African Americans in autism genetic research: A rationale for inclusion of subjects representing diverse family structures." They reported, "African American children with autism are seriously under-respresented in existing genetic registries and biomedical research studies of autism...Comprehensive efforts-including expansion of eligibility to families of diverse structure--are warranted to facilitate the inclusion of African American children in biomedical research." (NIH)

New Study Finds Higher Rates of Autism; Bullying: How To Respond?; Actors for Autism

"I didn't get to where I am today by not being autistic."--Larry Arnold

A new study out of South Korea suggests that 1 in 38 children have traits of autism. This finding is higher than previous estimates of 1 in about 100. The researches do not believe South Korea has higher rates of autism. They believe that autism often goes undiagnosed in many countries. The study was published this week in the Jounral of Psychiatry. 55,000 school children were screened, ages 7-12, in one district in South Korea. It must be pointed out that only two-thirds of mainstream children participated in the study. The study took five years to complete.
Note: I would be cautious of this study at this point. We would need to see if other studies show the same or similar outcomes.

In my last post, I remarked that we've made great strides in human dignity in terms of serving and supporting individuals with autism and developmental disabilities. However, we have a long way to go. And one of those areas that needs attention is the bullying of children with autism and developmental disabilities, especially in our schools.  A study out of Massachusetts in 2009 found that 9 in 10 children with autism have been victims of bullying in school. The study surveyed 400 parents of children with autism. "Children with autism spectrum disorder are especially vulnerable targets because of the nature of their disability, " said Julia Landau, director at Massachusetts Advocates for Children. So how do we attack this problem? One way is to legally start addressing the problems in the child's IEP. This will give the power of law behind our advocacy. It will also give the child the tools and skills he or she needs handle those children who bully (after all, the reality is teachers, administrators and parents can't be everywhere).While I'm sure many school administrations and faculties have started programs regarding bullying; they must also start creating climates of acceptance of individuals with special needs at their schools. This can be done by initiating social curriculums which would teach children how to recognize bullying as well as how to react to bullies. And it is imperative that administrators, teachers, students and parents respond promptly to any reports of bullying. Those events should be documented on incident reports so timely "after action" responses are completed and appropriate actions are taken. This is a problem that can be solved if we all treat it more seriously.


4 Your Bookshelf:

• Since We're Friends: An Autism Picture Book by Lisa Jo Rudy. This book offers practical ideas for supporting friendships.
• Rules by Cynthia Lord. This is a book for families with children with autism. It's a great book for siblings. Great conversation starter.

Importance of Art Therapy, Biomedical Treatments, First 100 Days Kit, Non-English Resources for Autism, Autism Resource for Military Families

"I see people with Asperger's Syndrome as a bright thread in the rich tapestry of life."

Short Note From The Editor:

I've had the honor of serving and supporting individuals with autism and developmental disabilities for almost 40 years now. I came into the profession at the tail end of deinstitutionalization and the beginning of community support services. As I've been doing research for this blog, I've been impressed by all of the services, supports, resources and information available on autism. Just as important, I've been impressed by the great strides that have been made in human dignity. We still have more work to do. But one thing is certain: this is a profession that should hold its head high---it's done a remarkable job in a very short period of time.

Art and Autism:

For those of us familiar with supporting and serving individuals with autism, it's apparent people with autism exhibit a high degree of creative ability as well as excellence in many areas.  It's one of the many reasons why art therapy helps people with autism be more creative. It also helps individuals address some of the other difficulties such as the emotional expressions of frustration and anger. Art therapy, like academics, requires individualized attention. It's imperative to find the right kind of art therapy for each individual. In short, this means developing a plan of treatment  specific to an individual. Art therapists usually set goals to target the following areas:Tony Attwood.

• Imagination/Abstract Thinking Deficits
• Sensory Regulation and Integration
• Emotions/Self-Expression
• Developmental Growth
• Recreation/Leisure Skills
• Visual-Spacial Deficits

For more information on art therapy, visit http://arttherapyandaustim.com/

4 Your Bookshelf: 

• The Art of Autism: Shattering Myths about People Living on the Autism Spectrum by Debbi Hosseini.
• Reaching the Child with Autism through Art: Creative Activities that Improve Sensory, Social and Language Skills by Toni Flowers.
• The Girl Who Spoke with Pictures by Eileen Miller.

Study: Early Disagnosis Is The Key, Riding and Walking 4 Autism, Dental Tool Kit

"Our purpose was to help her, not to fix her. Our purpose was not to create a whole new child, it was to let her be herself--because she's a wonderful child." {Mother of a young girl with autism}

Key Study and Findings:

A new report published in the Journal of Pediatrics clearly demonstrates the importance of early screening tests for autism. The old adage, "the earlier, the better," is shown to be true once again when it comes to detecting signs pointing to autism in children as young as 1 year of age. The findings and implications of this study include, but are not limited to, the following:

• Pediatricians need to start systematic screening of all children at routine well-baby checkups. Few do it now. (A 24 item checklist is now available online from Autism Speaks).
• The study shows it's possible to get reliable test results from children as young as 18-24 months. Currently, the average age of an autism diagnosis is 5.
• Most children are eligible for screening services in most states.
• The screening test used accurately diagnosed about 75% of the children.

(USA Today also reported on this study)

Strong Suggestion from the editor of Autism News and Views: Advocate medical schools do a better job in the teaching of screening techniques for autism in children as young as 1.


Spotlight On Upcoming Events:

• Bridges Ride For Autism. This charity bike ride for autism is set for Sunday, July 17, 2011. Starting time will be 8 AM. Don't have a bike? No problem. There will also be a 5k walk over the Brooklyn Bridge starting at 8:30 AM. The event will begin at the South Street Seaport. Check-In time will be 7 AM. Registration information is available at: www.bridgesrideforautism.com/
• Autism 5K Walk/ Run on Saturday, May 21, 2001. The event will be held at Lake Calhoun in Minneapolis, MN. Contact: info@autism5k.org.
• Step Up For Autism Walk on Sunday, June 26, 2011. The event will take place at the Naperville Riverwalk in Naperville, Ill. Contact #: 630.355.6533. Registration begins at 10:30 A.M.
• North Dakota Autism Center is sponsoring A Walk For Autism on Saturday, May 14, 2011. The event will be in West Fargo, ND.  Registration starts at 9 A.M. Contact 701.277.8844 for more details.
• Contact Autism Speaks for a listing of all of the Walk Now For Autism Speaks events scheduled around the country.

Upcoming Conference News:

• Milestone's 9th Annual Autism/Aspergers Conference. Tuesday, June 21, 2011. 8:30 A.M. - 5 PM. Mayfield Hgts., Ohio. Contact #: 216.464.7600

Summertime Safety Tips, Siblings and Autism, Jobs 4 Autism, Research You Can Use, Risks of Wandering and Elopement

"I never set out to be weird. It was always other people who called me weird."--Frank Zappa

Summer will arrive very soon, and there are preparations that need to be made to ensure children are safe. This takes on added significance with individuals with autism. Take a few minutes to review the following safety tips when going on vacation or summer camp:

• Make sure each child and young adult carries the proper identification. Many states issue wearable ID cards.
• Keep important information about the individual handy, i.e. home address, addresses of closest relatives, the name and address of the family physician, type of medications the person is using,  the person's diet,  medical issues, etc.
• Teach individuals with autism how to swim. Your local YMCA can help with lessons. Drowning is the leading cause of death among children with autism (Source:National Autism Association).
• If the individual has a tendency to wander, there is technology available to help locate missing persons, i.e. Project Lifesaver, local law enforcement. If you plan on attending a family event, make sure some member of the family is appointed to look out for the individual(s) with autism (See recent study below re: risks of wandering and elopement)
• If the individual goes to camp ensure camp counselors have been trained in First Aid and CPR. They should also have training in working with people with autism and developmental disabilities.
• Don't forget the sunscreen!

Quick Recommendation: Visit Autism Hangout.com. It's an online community and a great source of news, discussion forums, resources and much, much more. We've linked to it under "Advocacy."

Key Studies and Findings:

The Interactive Autism Network (IAN) released a report recently that shows that half of children with autism wander and elope. The behavior appears to peak at about age four. Dr. Paul Law, director of the IAN project, said, "This survey is the first research effort to scientifically validate that elopement is a critical safety issue for the autism community." Elopement puts individuals at risk. For example, the study found 2 in 3 parents reported their children had a close call with a traffic injury.  32% of parents reported a close call with possible drowning.  In addition, elopement also has a significant effect on families. The report found 40% of parents had suffered sleep disruption due to fear of elopment. Some of the reasons parents attributed to wandering included children enjoying exploration; heading off to a favorite location; escaping demands and escaping sensory discomfort.

Washington University School of Medicine in St. Louis recently reported on interesting findings regarding siblings of children with autism. Dr. John Constantino, MD said, "Researchers presume one child is affected, and the other is not, but our findings suggest that although one child may have autism while the other does not, it's very possible both children are affected to some degree by genes that contribute to autism." He also noted that siblings of children with autism have sub-clinical traits of autism, for some reason, they do not develop autism. In short, the findings provide a greater insight into the inheritance patterns of autism and its associated traits (Source: American Journal of Psychiatry).

Key Finding Re: Co-Morbidity of Autism + Epilepsy; Common Genetic Cause of Autism and Epilepsy Found; For Parents of Individuals With Autism--What Supports Are Available To Them And Where Are They?; Transitioning To Adulthood Tool Kit

"I do not suffer from autism, but I do suffer from the way you treat me."  Tyler Durdin

• Autism Speaks, in conjunction with Miami Children's Hospital, is reporting new research that shows mortality rate is increased in persons with autism who also have epilepsy. Data from the Journal of Child Neurology concluded that when epilepsy and autism occurred together, the mortality rates increased by more than 800%. Dr. Robert Tuchman, of Miami Children's Hospital, said "The study highlights the importance of early identification of epilepsy in children with autism and of autism in children with epilepsy." Dr. Clara Lajonchere, VP of Clinical Programs at Autism Speaks, also cautioned, "Sudden, unexpected or unexplained death in autism is often, but not always related to epilepsy, and we need to use caution when interpreting this data." Dr. Lajonchere added that the findings are important in understanding the risk factors that contribute to early death in individuals with autism.
• The CHUM Research Centre in Montreal reported they've identified a new gene that predisposes people to both autism and epilepsy. According to neurologist, Dr. Patrick Cossette, he reported "the results show for the first time the role of SYN 1 gene in autism, in addition to epilepsy, and strengthen the hypothesis that a deregulation of the function of the synapse because of this mutation is the cause of both diseases."
• Parents of children and adults who have autism face formidable challenges. These challenges include, but are not limited to, finding appropriate resources and supports, frustration due to financial hardship, difficulty in balancing work life with caregiving and feelings of isolation. So what are these parents to do? The good news is there are a multitude of services available if you know whom to contact (Studies have shown that most urban areas provide good access to services and supports). Depending on what state you live in, it's always good to start with that state's department that provides that information. In some states, it could be the county. However, there is also another good place to start. Contact the admission's office of the nearest service provider and/or agency that provides services to individuals with autism and developmental disabilities. In my long experience in this profession, I've found admission's personnel exceedingly knowledgeable, and they can assist you in navigating through the bureaucracy. In addition, there are a number of advocacy groups that assist parents in finding appropriate services and supports. We've linked to many of those groups on our web site under "Advocacy" and "Resources 4 parents."

Medications Fall Short, Catch This New Film, Decoding Autism, Tool Kit, New Autism Center To Open

I want to take a moment to thank all those who visited the blog after its launch last week. The number of visits for the initial release was a pleasant surprise. Since the launch, we listed additional links to be able to serve you better. Again, thank you very much.

• In the current issue of Pediatrics, researchers reported that medications are of little help to most children with autism. Although many treatments for autism fall short, behavioral therapy continues to be the most effective.
• In last week's edition, we reported on several films that focused on autism. This month another film opened entitled, Wretches & Jabberers. It's a buddy/trip movie about two individuals who are trying to change public perceptions of autism. The director of the film is Gerardine Wurzburg, who directed the 1992 film, Educating Peter, a film about people with Down Syndrome.