Next week (May 23rd – May 27th), parents, educators, physicians and individuals with autism will be converging on a Chicago-area suburb for a conference aimed at educating attendees about the disorder and its treatment options.
The 2012 AutismOne / Generation Rescue Conference will be held at The Westin Lombard Yorktown Center and feature over 130 speakers, six of which will be featured.
The main purpose of this event (as in previous years) will be to provide education and support for families and professionals working and dealing with autism. In addition to the speakers, there will be presenters, authors and exhibitors, as well as official credits and units available for doctors, nurses, therapists and first responders (CME). Child care will be provided for families with children.
Thousands of people are expected to turn out for the five-day event, which promises to focus on biomedical treatments and other strategies that parents and their health care teams can implement.
Registration is $25 per person and covers materials and processing fees for all general session tracks and lectures.
Despite your opinion about biomedical treatment options for autism (good, bad or indifferent), this conference will be an excellent opportunity to network with many other individuals within the autism community who are sharing similar challenges. I personally will not be attending but have heard nothing but positive things from those who have attended in previous years. If you live close to the Chicago area or can swing the travel costs, you may want to consider checking it out.
An interesting (and largely unreported) story out of Italy has been making the rounds this past week, once again giving new life to the contentious autism-vaccine debate. In the Italian Court of Rimini, a child has been compensated with a fifteen-year annuity due to an “established” link between an MMR vaccine and autism-like symptoms.
According the report, the unnamed youngster received a prophylaxis trivalent MMR vaccine back in 2004 and developed adverse symptoms shortly thereafter. The child continued to regress the following year, and is now said to be “100% disabled.” The parents of the child were also awarded reimbursement for their court costs.
The case is now expected to be put before an appeals court as authorities are said to be concerned about the legal precedent this may set.
So far, reports of this story have been primarily confined to Italian and French news outlets, so it’s impossible to say just how accurate they are due to potential translation issues. However, if everything being reported is in fact true, this will no doubt create a new PR battle between vaccine safety advocates and the pro-vaccine lobby.
For those fluent in Italian, the full court judgment can be read here and the original news report published last month can be read here.
Dan Spitz and Dave Mustaine, former members of legendary thrash-metal bands Anthrax and Megadeth, respectively, have recently teamed up on a new project entitled Red Lamb. The self-funded collaboration includes the new single "Puzzle Box," a song co-produced and written by Spitz and Mustaine that addresses the complex issues of autism.
As we previously reported, Spitz and his wife Candi became passionate autism advocates several years ago, shortly after their identical twins were diagnosed with the disorder. During that time, Spitz has used his celebrity to help raise awareness and support, particularly among those within the music community. The platform of music is where Spitz seeks to further advance awareness and acceptance for those living with the condition. He was recently
quoted as saying, "It’s time for someone in music to wake the world up to autism. We have Holly Robinson Peete in film, we have vocal people in NASCAR, and of course Dan Marino and others in sports. Now it’s time for someone who lives it to speak the truth to the people in true metal fashion."
Red Lamb also features Grammy award winner Chris Vrenna (of Nine Inch Nails and Marilyn Manson fame), Patrick Johansson (drums) and Don Chaffin
(vocals). The band has been described as a combination of hard rock, punk, alternative rock and a "dash of thrash."
Spitz and Mustaine have been long-time friends and their previous endeavors have collectively sold nearly 50 million records. I grew up listening to these and other metal bands, so it’s great to see these guys stepping up to the plate and helping others in the process. As Spitz alluded to, we need more public figures to use their influence to educate others about autism. The more this occurs, the more everyone will benefit.
Two employees at St. John’s Elementary in Darlington, South Carolina have been arrested after the release of a disturbing video that shows them yelling at, pushing and striking a ten-year-old special needs student.
Tomeka Self and Rosanna Dudley have been charged with assault and battery and are scheduled to appear in court next week.
South Carolina police released the video on Tuesday showing the non-verbal youngster being slapped in the face, pushed and verbally abused as the two women attempt to fit him with a restraining harness. According to reports, the bus driver tipped off police about the incident, prompting them to review the bus’s security footage.
These types of stories are disturbing and no doubt occur more times than we realize. It’s only the increase of security cameras in recent years that has raised our awareness of how widespread the problem actually is.
Hopefully, this trend will continue and create some accountability for educators and school employees who work around special needs children, minimizing or completely eliminating these incidents in the future.
It’s been a while since we posted an iPad apps for autism list, so here’s our 2012 version of some newer (and older) apps to consider for individuals with autism and other related disorders:
1) Shoe Tying 1 – Activity App – Teach your child to tie shoes in a fraction of the time with this video modeling program. This app breaks down shoe tying into individual video steps that children can learn in sequence format. With the aid of the Activity App Shoe Tying 1, you teach the student to tie a shoe off their foot and on a table top where it is easier for you to help. The student learns both the basic skill and the associated language. Once the student has mastered the skill table top, you then transition the skill to tying the shoe on the foot. Currently available for $4.99. http://itunes.apple.com/us/app/id514328778
2) Grace App – Grace is a digital version of the Picture Exchange Communications System, a book that helps those unable to speak to build sentences from relevant images. The app starts with 400 images that were chosen by non-verbal people as communication starters. For example, categories include colors, food and drink, my body, and places. Grace allows the users to build their “photo vocabulary” by snapping their own photos to use within the app. Grace is available for $24.99. http://itunes.apple.com/us/app/grace-picture-exchange-for/id360574688
3) The Social Express – The Social Express™ is engaging, educational software for children and young adults with social learning challenges. The software is designed to teach users how to think about and manage social situations, helping them to develop meaningful social relationships and succeed in life. Available for $89.99. http://itunes.apple.com/us/app/the-social-express/id477525808
4) Choiceworks – The Choiceworks app is a tool for helping children complete daily routines, understand & control their feelings and improve their waiting skills. It can also be customized for teachers in a school setting. It was created with the support of leading hospitals and child development specialists. Available for both iPhone and iPad. $14.99. http://itunes.apple.com/us/app/choiceworks/id486210964
5) Scene Speak - Creates visual scene displays for users. Personalized images can be uploaded to this app from your home computer or through an online image search. The images can then be resized and active “sound areas” can be added. The application allows both the number and size of the “sound areas” to be customized. Spoken messages can be added to the “sound areas” by using the Text-To-Speech feature, with one of five preloaded voices. Available for $9.99. http://itunes.apple.com/us/app/scene-speak/id420492342
6) TapSpeak Button – This app modernizes the idea of a mechanical switch that records and plays messages. The creators have taken the idea and extended it to provide a portable, convenient, and stigma-free tool to use for basic teaching and communication tasks. TapSpeak Button is especially useful for teaching cause and effect relationships. Available for $14.99. http://itunes.apple.com/us/app/tapspeak-button/id359998293
7) U-Sync Video Scheduler – The app contains a picture / video scheduler that is controlled wirelessly through the Internet by parents, special education teachers, and therapists, job coaches, adult service providers and others who support people with disabilities.
With U-Sync Video Scheduler, changing a user’s schedule is as simple as one mouse click. U-Sync allows caregivers to apply video modeling techniques to help users know what to do, how to do it and when to do it. Available for $19.99. http://itunes.apple.com/app/u-sync-video-scheduler/id496367156
8 ) Proloquo2Go – Provides a full-featured augmentative and alternative communication (AAC) solution for those who have difficulty speaking. It contains text-to-speech voices, up-to-date symbols, powerful automatic conjugations, a default vocabulary and much more. Proloquo2Go, available for iPhone and iPad at $189.99, is considered a good alternative against buying an expensive AAC device. http://itunes.apple.com/us/app/proloquo2go/id308368164
First there was Jason McElwain. Now, another young man with autism has taken to YouTube to show off some unique basketball skills.
In a recently uploaded 48-second video, 17-year-old Karl Garay can be seen spinning a basketball from the palm of his hand and then keeping it going using the same hand.
Garay’s father, who I’ve known for six years, told me the self-taught trick evolved from his son’s love of spinning and motion and began “out of nowhere.” The special talent has been an excellent icebreaker in social situations and also has been a great form of self-expression.
Diagnosed with autism at an early age, Karl has had communication difficulties much of his life, but this has not stopped him from pursuing the things he loves.
Once again, this video is a reminder that we should never place limitations or boundaries on those with autism. Each individual has their own set of talents and abilities and as parents, teachers or caregivers, it’s our responsibility to help unlock these gifts, allowing them to reach their fullest potential.
Donald Trump is a well-known celebrity entrepreneur who has never been afraid to speak his mind. Earlier this month, he decided to weigh in on the
autism-vaccine controversy on Fox & Friends, a weekday morning program on the Fox News Channel.
On Autism Awareness Day, Trump made his weekly appearance and was asked about the dramatic rise in cases of autism over the past several decades. The conversation quickly focused on the autism-vaccine debate, when Trump shared his "theory" that autism is caused by vaccinations.
He cited anecdotal evidence, including a family he knows who had a two-year-old child that had "lost it" one month after being
When challenged by host Gretchen Carlson that most physicians disagree with his theory, Trump admitted that his opinions were controversial,
but said he could care less what others thought.
Ironically, Trump’s opinions are in direct conflict with Autism Speaks’ official position on vaccinations, an organization he claims to support through various fundraisers.
While I applaud Mr. Trump for speaking out on behalf of parents who feel vaccines may have played a role in their children’s autism, his ignorance on this issue is painfully evident. As such, it’s probably best to let vaccine safety advocates who are better informed to address the media in the future.
April is Autism Awareness Month, so we thought it would be a good idea to
repost our autism symptoms checklist below. Some of this information may already be well known to many, but it wasn’t for us when our son was younger. He received a delayed diagnosis, mainly due to our ignorance about autism at the time. Had we come across a list like this sooner, we would have been able to provide much-needed intervention at an earlier age.
Remember that autism is a complex neurological condition, so it’s very important to consult with a licensed medical professional if you suspect you or a loved one may have the disorder.
Please Tweet, Share and +1 this info so others may have it available for current or future reference:
The severity, frequency, and grouping of the following symptoms will determine where (if at all) an individual will fall on the autism spectrum.
• Repetitive behaviors (may want to watch the same program over and
over again) • Unresponsive to commands or questions ("in their own
• Delayed speech & language development (non-verbal, especially by age 3)
• Lack of imitation of others or imaginative play
• Indifferent to the feelings of others
• Hypersensitivity to light & sound (covers ears when music is played or
covers eyes when going outside)
• Self-stimulatory behaviors (rocking, jumping up and down, hand flapping)
• Echolalia (Repetition or echoing of a word or phrase just spoken by another
• Unusual emotional responses (inappropriate laughing or crying)
• Frequent temper tantrums / meltdowns
• Responds adversely to physical affection, hugs, kisses, etc.
• Shows no interest in making friends
• Does not initiate conversation
• Very poor diet (may eat only starches)
• Frequently walks on tip-toes as a toddler
• Socially withdrawn or socially awkward
• Shows little expressive language
• Clumsiness (falls or trips often)
• Improper use of pronouns, statements, and questions
• Unusual tone or rhythm of speech
• Self Injurious Behavior (head banging, scratching/biting self)
• Frequently makes irrelevant remarks
• Difficulty with abstract language and concepts
• Preoccupied with one or only a few narrow interests
• Need for sameness (adheres to routines)
• Severe tantrums when routines are disrupted
• Shows an attachment to unusual objects such as car parts, branches, leaves,
• Fascination with spinning objects or spinning one’s self
• Very good at rote memory tasks such as repeating lists of items or facts
A new study released this past week has once again linked the consumption of processed foods to health complications, giving food safety advocates even more cause for concern. The April 10th publication of the Clinical Epigenetics Journal reported a link between high fructose corn syrup (HFCS) and autism in the United States. According to the study, the rise in autism rates "is not related to mercury exposure from fish, coal-fired power plants, thimerosal, or dental amalgam but instead to the consumption of HFCS.”
The study, led by former FDA toxicologist and whistleblower Renee Dufault, found that a deficiency of zinc, triggered by the consumption of HFCS and other processed foods, interferes with the body’s ability to eliminate toxins such as mercury and pesticides.
High fructose corn syrup has long been suspected of having an adverse impact on health and has been purportedly linked to obesity, cardiovascular disease, diabetes and liver disease. The fructose-laden ingredient has even been reported to facilitate the growth of cancer cells.
Dufault made news in 2009 with another study (which was referenced in these new findings), also linking high fructose corn syrup to mercury. Many HFCS proponents and some in the autism community will immediately (and predictively) discount these new findings, but regardless, they still warrant further research.
With autism rates now at a mind-blowing 1 in 88, there are many who are desperately looking for a definitive cause and a silver bullet theory. Whether or not there is something to these new findings remains to be seen, but we must not give up on our quest for the truth.
I wear a set of keys on a chain around my neck. I don’t know what, exactly, these keys unlock, but I wear them in hope, and in memory.
After my grandmother passed away years ago, my grandfather invited the women of the family to view her jewelry box and select any items that we would like to have. Grief-stricken though he was, he remembered (and honored) his beloved’s wish that her items be shared with the family.
At first, the jewelry seemed to consist entirely of gold pieces; I only wear silver. But then, a glimmering caught my eye, a flash of silver from the back of a drawer. Instinctively, I reached in, pulling out a small pair of silver keys. As I held them in my hand, I was intrigued by the mystery of what they might unlock, and the symbolism I saw within them. No one could tell me what they unlocked, but I knew what they represented: a perfect match, as my grandparents had been. Instead of questioning my fascination, I put them on a chain, forming a necklace that I’d wear every day for years.
In college, I wore them in hopes that I, too, might find my ‘perfect match’. Now, I wear them along with my wedding rings, as a statement of a dream realized. They make me think of my grandparents, who have both since passed away. I remember how my grandparents accepted and loved
my brother Willie, who has autism.
My grandparents were born in a time when many people with special needs were institutionalized and shut away from the world. (At least one family member from my grandparents’ generation openly questioned my parents as to why they hadn’t institutionalized Willie.) Yet my grandparents chose to open their hearts and welcome my brother into our family. Yes, they had to work through fear and face down societal prejudice to do so. But what I’ll always remember is the look my grandfather would get whenever he’d talk about my brother. Pride, compassion, and love would fill every line on his face.
Willie was – is – an integral part of our family. He has different needs, a different diet, and a different communication style. In some ways, Willie’s need for support makes him vulnerable. But his strengths are what my grandparents chose to celebrate. For example, whenever we’d gather as a family for Thanksgiving or Christmas or Easter, my parents and grandparents would turn to Willie, inviting him to ask the blessing. And whenever Willie prays, I think of how beautiful it is to be led by him.
I am hoping against hope that we will continue to ‘unlock the mystery’ of autism, that we will continue to celebrate and empower individuals on the autism spectrum. Moreover, I hope that we will allow ourselves to be changed – to let our relationships with people on the autism spectrum transform our thinking. As a society, we have made great steps forward when it comes to inclusion and autism. Even so, we have a long way to travel on the road of acceptance.
Our work is not yet finished – not while family members still suggest the isolation and exclusion of institutions as a viable option. Not while school systems and Medicaid programs cut wages, programs, and benefits for individuals, teachers, and caregivers. Not while people with autism lack opportunities for meaningful work. Medical and technological advances move us closer to unlocking the mysteries of autism, but will our hearts and minds also swing open to welcome people with special needs?
Many people have asked me about the keys I wear; they sense a story behind the necklace. And whenever I share that story – the story of two people who loved each other and accepted their grandson – I think about how, in making these everyday choices, my grandparents changed the world.
I’ll be wearing my keys this April, in honor of Autism Awareness Month. It may seem a simple thing, but there is significance in it. The keys call to mind both a sobering truth and an inspiring challenge: the world only changes one person at a time.
——- About the Author
Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism & intellectual disabilities (& empowering caregivers to do the same). Her younger brother, Willie, has autism, and she writes about finding meaning in your most challenging relationships at A Wish Come Clear. Her first book, Your Creed of Care: How To Dig For Treasure In People (Without Getting Buried Alive) is a guide for caregivers, free to all who elect to receive posts via email at:
All information in this site is presented for support and educational purposes only. It is not intended to substitute for medical treatment or visiting a licensed medical physician. Visitors who desire to apply or use any information listed herein are urged to consult with licensed healthcare professionals first. All information is deemed reliable but its accuracy can't be guaranteed.
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