While all children may wander off from their parents at some point, children with autism seem to do it more than their peers. Wandering is not just limited to children on the autism spectrum but it is also a risk for individuals of all ages. Let’s take it a step further, wandering among individuals with autism isn’t limited to those with more severe impairments but it can happen across the entire spectrum – from classical autism to individuals with Asperger’s Syndrome. Wandering is a distinct risk and a new organization has been founded to focus on autism and wandering – Autism Wandering Awareness Alerts Response Education.

Both of my children are prone to wander and this is listed on the risk assessment form that we have filled out with both the state’s Division of Developmental Disabilities as well as with our provider agency. Each of my children wears a medical identification bracelet just in case they wander off and are found by someone else. We live in the desert and my father is a member of the local search and rescue organization and he’s had to search for children with autism that are lost in the desert. He’s helped provide my children with some basic survival skills but what he knows about both autism (as a grandfather) and search and rescue has come in handy in these searches and they’ve all ended well.

The following is a press release announcing the Autism Wandering Awareness Alerts Response Education website.

AWAARE Formed to Prevent Wandering-Related Deaths in Autism Community
Six National Autism Groups Join Forces to Address Risks Associated with Wandering from Safe Environments

CARY, N.C., July 7 — A new coalition of six national autism non-profit organizations, Autism Wandering Awareness Alerts Response Education (AWAARE), launched its website today (www.awaare.org) in a collaborative effort to prevent wandering-related injuries and deaths, apparently on the rise in the autism community. Coalition member organizations are AutismOne, Autism Speaks, the Doug Flutie Jr. Foundation for Autism, the HollyRod Foundation, the National Autism Association (NAA), and Talk About Curing Autism (TACA.)

While there has been no official tracking of wandering-related incidents involving individuals diagnosed with autism, in an online poll conducted by NAA in 2007, 92% of parent respondents said their children with autism have a tendency to wander away from safe environments. A 2008 study from Denmark found that the mortality rate within the autism population is twice as high as in the general population. In 2001, a California research team attributed elevated death rates among people with autism in large part to drowning. Drowning, prolonged exposure, and other wandering-related factors remain among the top causes of death within the autism population.

“We’re working together to raise awareness of the threats posed to children and adults with autism from wandering, and to provide parents and caregivers with the tools and resources they need to protect their loved ones,” said NAA Board Chair Lori McIlwain. “Saving lives and preventing injuries in the autism community is AWAARE’s mission.”

In addition to educating parents and caregivers, AWAARE is reaching out to first responders to increase their understanding and adjust their response mechanisms for autism elopement. “It is our hope that law enforcement and other first responders will devise strategies for dealing effectively with wandering-related incidents when they occur in their own communities,” said parent and TACA Family Scholarship Manager Moira Giammatteo.

“The AWAARE effort complements the Autism Safety Project (www.autismsafetyproject.org) that Autism Speaks launched last year. We are thrilled to join forces with several autism organizations, so that together we can all provide the much-needed focus on this important initiative,” commented Lisa Goring, National Director of Family Services for Autism Speaks.

AWAARE provides prevention materials including brochures, first responder alert forms, guidance in creating a Family Wandering Alert Plan, and materials for use with school personnel. “I urge anyone caring for someone with autism to access these lifesaving resources and to share them with other parents and caregivers,” said Ms. McIlwain. “Our main goal is to ensure that families won’t experience the devastation that can result from their loved one wandering away from safety.”

With professionals around the world debating how autism spectrum disorders will be listed in the DSM-V, now is a good time to look back at the history of autism in the DSM, starting with the DSM-I and ending with the DSM-IV.

The Diagnostics and Statistics Manual of Mental Disorders (DSM) is the standard by which autism spectrum disorders are diagnosed in the United States. Autism was not included as a separate diagnostic condition in the original release of the DSM in 1952. As of the most recent release of the DSM, the DSM-IV, there are five types of autism spectrum disorders specifically identified. The journey of autism in the DSM is useful in understanding the increased diagnostic rates of today.

The DSM-I
The DSM-I was originally released in 1952. Although autism was recognized as a unique condition as early as 1943, it was not included in the DSM. Instead, children who exhibited autistic-like symptoms were diagnosed under the schizophrenic reaction, childhood type label.

The DSM-II
The second release of the Diagnostics and Statistics Manual of Mental Disorders came in 1968. As with the first release, autism was not included as a separate diagnostic category. In Roy Richard Grinker’s book, Unstrange Minds, the DSM-II included the following language: “the condition may be manifested by autistic, atypical and withdrawn behavior.” Children exhibiting these behaviors were diagnosed as schizophrenic, childhood type.

The DSM-III
In 1980, the DSM-III was released and we finally see the inclusion of autism as a separate diagnostic category. At this point, there was only one autism designation and it was entitled infantile autism. There were only six characteristics listed and each of these six symptoms must be present in order for an individual to be diagnosed with infantile autism. Due to some controversy surrounding the descriptor infantile, this category was changed to autistic disorder in 1987.

The DSM-IV
The most recent complete release of the DSM, the DSM-IV, occurred in 1994. At this point, the category of pervasive developmental disorders and several subtypes were added. In addition to autistic disorder, a diagnosis could be made under the categories of Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).

Besides the inclusion of four new subtypes, drastic changes were made to the criteria that needed to be met in order to receive a diagnosis of autistic disorder. The current release of the DSM has a list of 16 different symptoms used to describe autistic disorder and a patient only needs to exhibit six of the 16 to receive the diagnosis. This is in stark contrast to the language used in the 1980 release of the DSM-III.

The DSM-V is currently in the works and there are large groups of individuals working on changing the language used to describe the various pervasive developmental disorders. Autism has evolved through the four releases of the DSM and it is only natural to expect that it will be refined even further in the DSM-V.

This article first appeared on Suite101.com in January 2008: History of Autism in the DSM: Diagnostic Criteria for Autism Spectrum Disorders.

It’s graduation season and while thousands of American students will earn their college degree, hundreds of special guests and speakers will earn honorary degrees. This year, St. John’s University in New York conferred honorary Doctor of Humane Letters Degrees onto Bob and Suzanne Wright, cofounders of the well known Autism Speaks organization.

The following is a video recording of the free Growing Up With Autism webinar created by PBS’ This Emotional Life and Autism Speaks.

Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill, led a discussion with Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, addressing the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.

One question that parents of children on the autism spectrum as well as autism professionals are asking themselves is whether or not we are facing an autism epidemic in the United States. Autism spectrum disorder prevalence rates jumped from 1 in 150 children to 1 in 110 children. Is this jump due to better diagnostics from today’s professionals? Is this jump due to those that are mildly affected by autism marrying and having children, thus passing on genetic traits to their children? Is this jump due to external factors like vaccines?

Honestly, I don’t know.

An article that appeared in The Lakeland Times addresses the autism epidemic topic.

In the politically-tinted scientific world, there is what might be called a spectrum of causality, a sweep of beliefs about autism yielding two opposing viewpoints – those who believe the globe is engulfed in an autism pandemic constituting a major public health crisis, and those scientists who say it is all a myth.

What do you think? Should the rise in autism cases be considered an epidemic or not?

I am a member of a wonderful organization – Attachment Parenting International. I’ve been a member for six years now and volunteer my time with the organization. API has several Autism Awareness Month activities planned including a live phone seminar with Dr. Bob Sears, author of the The Autism Book.

Don’t miss API LIVE on April 26th when Lu Hanessian and Lysa Parker talk with Dr. Bob Sears about an issue that affects 1 in 110 children in this country: autism. You can register now to hear Dr. Sears talk in depth about autism and share insights from his new book The Autism Book. A copy of The Autism Book will be given away during this API Live teleseminar.

The call will take place on April 26 at 9PM EST / 6PM PST. Submit your questions for Dr. Bob Sears to API Live (apilive@attachmentparenting.org) in advance and we will try to address them during the call.

You can support API’s mission and take advantage of the knowledge and experience Ask API Live’s special guest by signing up today. Every dollar of your sign up fee goes toward education, support and outreach for parents in need.

I wrote a post about how I feel attachment parenting has been a tremendous help in raising my two children on the autism spectrum. Here’s an excerpt:

I was an attached parent prior to the time that my children’s autism symptoms presented and I’m an attached parent still today. I actually thank my attachment parenting style for helping me understand my children a bit more. Now this is not to say that mothers of children on the spectrum that don’t practice attachment parenting don’t understand their children but for my children, and me, my parenting style has been a tremendous help.

Read the entire post: Today is World Autism Awareness Day.

National Autism Awareness Month 2010 is right around the corner and the Autism Society of America has several events planned to help raise awareness about autism spectrum disorders. Check out their latest newsletter:

Kick Off National Autism Awareness Month with the Autism Society
Hundreds of Local Activities plus Text Giving Campaign to Support the Lives of Those Affected Today

Want to get involved with the autism community this April? Show your support this month by joining the Autism Society in wearing the ribbon, bouncing for autism, texting, and more!

Put on the Puzzle! The Autism Awareness Puzzle Ribbon is the most recognized symbol of the autism community in the world. Autism prevalence is now one in every 110 children in America – that’s 13 million families and growing who live with autism today. Show your support for people with autism by wearing the Autism Awareness Puzzle Ribbon this month – as a pin on your shirt, a magnet on your car, a badge on your blog, or even your Facebook profile picture – and educate folks on the potential of people with autism! For suggestions and resources, visit www.autism-society.org/ribbon.

Spread the word. Helping the autism community can be as easy as updating your Facebook or Twitter status! On April 1, the Autism Society is asking supporters to change their status on Facebook and/or Twitter to “Autism affects 1 in 110. Text “AUTISM” to 50555 to donate $10 to the Autism Society. Help spread the word: http://bit.ly/bUAVRf.” For the first time ever, supporters can now simply text “AUTISM” to 50555 to donate $10 to the Autism Society. 100% of your donations will go to support the Autism Society’s mission of improving the lives of all affected by autism.

Make a difference. There are several important bills moving through Congress that will have important effects on the autism community – safer educational settings (Keeping All Students Safe Act), better autism services (Autism Treatment Acceleration Act), greater financial independence (Achieving a Better Life Experience Act), better protection against toxic chemicals (Toxic Substances Control Act Reform, introduction anticipated soon), and more. For more information about this legislation and to take action to support it, visit www.vote4autism.org.

Connect with your neighborhood. The Autism Society and inflatable playground franchise Pump It Up are bouncing again with “Bounce for Autism” – over 100 community-based fundraising events that combine family fun with raising awareness and support for autism in locations nationwide that welcome children on the autism spectrum. Many Autism Society local chapters also put on events in the community through the month of April. But if you can’t find an event that suits you just right, create your own! 1Power4Autism is an online tool that makes it easy to mobilize friends and family and help make a difference.

- Bounce for Autism: www.bounceforautism.org

- Autism Society chapters: www.autism-society.org/chapters

- 1Power4Autism: www.1power4autism.org

Watch a movie. Did you know that something that seems as simple as going to the movies is not an option for many families affected by autism? The Autism Society is working with AMC entertainment to bring special-needs families “Sensory Friendly Films” every month. Our special showing of How to Train Your Dragon is coming to a theatre near you on April 10. Or, you could see a movie about autism itself – the Autism Society is partnering with the Independent Television Service (ITVS) to support 70 community screenings of the new movie The Horse Boy, based on the memoir of the same name. In the film, Rupert Isaacson shares the inspiring story of how he and his wife learned to think of their son’s autism as an adventure rather than a curse, a beginning rather than an end. Find participating locations for both events at:

- Sensory Friendly Films: www.autism-society.org/sensoryfilms

- The Horse Boy: http://www.pbs.org/independentlens/horse-boy/

Autism awareness in the United States is a prominent focus of autism organizations, parents, teachers, and professionals that work with individuals on the autism spectrum. However, autism awareness is an emerging trend in many parts of the world, include countries on the continent of Africa. Miss Ivory Coast, the mother of a child on the autism spectrum, is working to raise autism awareness in Africa through the Autism Community of Africa organization.

AUTISM SPEAKS IN THE U.K. ANNOUNCES A CHANGE IN NAME TO AUTISTICA

Autistica Will Continue to Collaborate with Autism Speaks U.S. on Autism Research and Other Issues of Mutual Interest

UK charity Autism Speaks and charity of the same name in the United States are pleased to announce that the former will be renamed Autistica with effect from 1 January 2010. The UK charity has adopted as its positioning statement “Science in the Service of Autism”.

The two charities are linked by a common interest in raising funds for and funding biomedical research into the causes and treatment of autism, and have been fully separate and independent entities since March 2007. The American charity is as well known both domestically and internationally for the advocacy work that its name implies as for the biomedical research it funds. The British charity continues to be focussed entirely upon biomedical research and so its new identity is one which better reflects this core purpose. The change takes place at the end of 2009 and is effective from 1 January 2010. The two organisations will continue to collaborate as now in areas of shared interest, which include a number of collaborative international research projects in the fields of autism genetics, the study of baby siblings of children with autism and brain studies.

Hilary Gilfoy, chief executive of Autistica said, “We are grateful to our American colleagues in Autism Speaks for the support which they have given us during our first five years. This arrangement allowed us to benefit from their robust research template and funding experience. The change of name acknowledges that, with their help, we are now a mature organisation able to stand on our own two feet and establish our own identity. We are looking forward to continuing our shared interest in research.”

Mark Roithmayr, President of Autism Speaks, said, “We are delighted that the UK charity has become a recognised funder of autism research in its own right, and fully agree that the time has come when its independent status and separate identity should be reflected in its name. Progress in research relies on international collaboration between researchers and funders and we will continue jointly to encourage and develop this. We wish Autistica every success.”

Founder and now president of the UK charity, Dame Stephanie Shirley, said, “I am delighted that we have been able to increase funding for autism research in the UK by following the example of the pioneering families in the United States who first inspired me and then supported me in creating the UK charity. I am sure Autistica will continue to go from strength to strength and I am proud that my own Shirley Foundation will be supporting the charity under its new name by meeting its core costs until 2012.”