April 2 is U.N.-declared World Autism Awareness Day. A life touched by autism is one forever in search of new information, and answers to the questions “Why did this happen?” and “How can I help my child?” Here’s a brief wrap of some of the latest headlines about the mysterious neurological disorder, which affects as many as 1 in 110 children, according to the Centers for Disease Control and Prevention.

In March, a federal court ruled that the evidence supporting an alleged link between autism and a mercury-containing preservative in vaccines was not persuasive, and that the families of children who have  autism were not entitled to compensation. Vaccine court finds no link to autism

In February, a notorious study that linked the measles, mumps and rubella (MMR) vaccine to autism and digestive disorders, was retracted 12 years after it was published.  Its lead author Dr. Andrew Wakefield was found to have acted unethically in conducting the research by the British entity that oversees doctors.   Medical journal retracts study linking autism to vaccine

As research  indicates that the rates of autism are increasing and that about 1 percent of the children in the United States have the disorder,  there is an increasing body of science looking into causes and contributing factors to the mysterious condition.

Here are some major findings according to Autism Speaks, a leading advocacy and education organization.

1) Two major studies using different methodologies reached similar conclusions: autism is on the rise.  Four years earlier, autism spectrum disorder was found to affect 1 out of 150 children, but more recent data suggest it’s closer to 1 in 91 or 1 in 110 children, depending on the study.  Research also found that autism is four times more common in boys than girls.

Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US

Prevalence of autism spectrum disorders – autism and developmental disabilities monitoring network

2) Delivering early intervention programs for children with autism improved IQ, language skills and adaptive behavior even for those as young as 18 months.

Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model

3) An autism genome study found a genetic variation associated with the genes cadherin 10 and 9, which are responsible for forming nerve connections. This suggests abnormal interactions between neurons may cause the deficits seen in autism.

Common genetic variants on 5p14.1 associate with autism spectrum disorders

4) Researchers analyzed submicroscopic DNA deletions or duplications called copy number variants in the autism genome and found a new cellular pathway called “ubiquitin pathway,” in the pathology of autism.

Autism genome-wide copy number variation reveals ubiquitin and neuronal genes

5) A study demonstrated that combining drug and behavioral treatments were more effective than drug treatment alone for reducing challenging behaviors.

Medication and parent training in children with pervasive developmental disorders and serious behavior problems: Results from a randomized clinical trial

For the complete list and expanded explanation, visit Top 10 Autism Research Achievements

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

Latest on autism research – Paging Dr. Gupta – CNN.com Blogs.

Enabling Devices is a company dedicated to developing affordable learning and assistive devices to help people of all ages with disabling conditions.

They have a full online catalog and I would highly suggest that you get one of their catalogs as well!

Web Link: Enabling Devices – Assistive Technology – Products for the Disabled.

Many of the children at the Broward Children’s Center use assistive technology to function in their daily lives.  I started hunting around the internet and found an adaptive guitar that allows us to tie devices such as sip-and-puff technology into the gaming system opening the door to even MORE of our kids and providing them with ability to enjoy this wonderful donation as well.

I ended up finding a device called AT-Play from Compusult to accomplish exactly what I was looking for.  As described on their website:

AT-Play allows physically disabled persons to independently play the Rock Band 2 video game for Xbox 360. Guitar strumming and chords can be controlled with your preferred arrangement of switches, including sip-and-puff devices, buttons, and foot pedals.

This same company has provided us with proven technologies in the past and are a very highly respected company.  They are also the makers of the Jouse 2 product which is their version of sip-and-puff technology.  Several of our kids at the Broward Children’s Center utilize this equipment every single day.

So with the kiosk on its way to our facility and the adaptive and assistive technology at our fingertips, I am trying to raise funds to help pay for this modified equipment.  To make a donation, no matter how  much, all you have to do is CLICK HERE. All donations will be processed through First Giving and donated directly to the Broward Children’s Center.  You can also click on the “widget” in the right hand column of this blog to make a donation.

If you would like to see this technology in action, I have included the video from Compusult below.  If you fast forward to about 3:00 into the video, you will see this modified technology in action.  Once we have this entire setup in place I am hoping to get some video of the kids at the center enjoying this great new addition!

Once again, I am asking for your help to raise funds for the adaptive part of the setup.  Donate Now to bring a smile to their face and help make the kids at the Broward Children’s Center a Rock Star!

The Global Assistive Technology Encyclopedia (GATE) is a Wiki, or piece of software that allows users to freely create and edit Web page content using any Web browser. It’s a little bit like Wikipedia, but just concentrating on assistive technology. GATE is very simple to use, with a control panel enabling you to add content and more.

This wiki has been created by AbilityNet, the UK’s largest provider of advice and information on all aspects of Access to technology. The purpose of the wiki is to provide live and up to date information on all aspects of Assistive Technology.

The wiki is moderated and all comments and opinions are those of the individual contributor not necessarily that of AbilityNet.

The wiki is in constant development and we welcome comments, thoughts and contributions.
Anyone who is a registered user can enter information.

via Global Assistive Technology Encyclopedia – Global Assistive Technology Wiki.

Disclaimer — I do not now nor have I ever worked for Apple, and they haven’t paid me in goods or dollars for this post (although I’m open to negotiation).

Last month, my twins turned 18. I’m still in deep denial over what is clearly a blip in the time-space continuum. I know for a fact that it was just a few days ago when we were huddled around their isolettes in the NICU, watching in awe as their tiny 24-week bodies struggled to survive. And now … well, I just can’t go there yet.

We have been so blessed, so lucky. Their delays, while significant, were just that — delays. They are both fully-functioning, healthy, happy (adult?) human beings, enjoying their senior year in high school and starting to think about the future. My daughter has taken the wheel on her road to life and is well on her way to independence. Her brother, who has had more physical and learning issues, still has a way to go.

For their 18th birthday, we got them each iPhones. During such difficult economic times, it’s reasonable to ask why would we spring for such a hot, trendy, extravagant gift as an iPhone. That, I can tell you in two words — assistive technology.

The lingering issues that continue to affect my son as a result of his extreme prematurity are:

• low tone/graphomotor issues — he explains it like this: “It’s really hard for me to think and write at the same time.”
• short-term memory deficit — he would explain it to you, if only he could remember. Seriously, one of his teachers once told me: “He seemed to understand. He repeated it back to me exactly.” He does understand — he understands everything, he just can’t remember once the cue is gone.
• sequencing disorder — trouble breaking down tasks into reasonable chunks and completing them in the right order in a reasonable amount of time.

I have long believed that my son was lucky to be born when he was — that technology would be his friend. I still believe that, but there have been some bumps along the way: an addiction to video games and losing three (count them, three) cell phones his freshman year. During the few days he managed to hold on to his cell phone, he never remembered to turn it on, so I couldn’t reach him any way.

Then, last year, he used his birthday money to buy himself an iPod Nano. Miracle of miracles, he did not lose it. He kept it turned off during school, but remembered to turn it on after school so he could listen on his way home. About a month ago, we had a meeting with his assistive technology specialist at school. A long-time PC person, she recently got an iPhone and is tremendously excited about the potential it holds for many of her students.

Assistive technology runs the gamut from wheelchairs to customized computers that allow quadriplegics to communicate with eye blinks. The field is exploding, but much of it is hugely expensive. While the initial outlay for the iPhone (about $200 for the middle-range iPhone) isn’t too bad, the $30 monthly bite per phone for the data package adds up fast. We learned, however, that unlike computer programs, iPhone apps are pretty inexpensive (often free), and there are new ones every day. While there are many PDAs out there, the iPhone offered some distinct advantages, first and foremost the fact that it would be my son’s new iPod, so we were pretty sure he would hold on to it.

It’s fairly obvious how the calendar and organizational apps could help someone with short-term memory problems, but the iPhone apps offer much more than simple datebook functionality. For example, there’s an app called VoCal that allows my son to record a voice message on his phone, which then translates into a written calendar reminder.

And it works! Our first iPhone success came after a missed orthodontist appointment one Friday. That night, he added the orthodontist’s phone number to his contacts and entered a voice reminder into his phone. That entry sent him an alert after school on Monday to call the orthodontist for a new appointment. My son gets out of school at 3:35. By the time I called him at 3:45, he had already made the new appointment and entered it onto the calendar, which automatically sent an email to me so I could put it on the family calendar. That may sound like a small thing, but it was one giant leap toward independence for him and peace of mind for me.

That ability to recognize voice commands is a huge advantage for a kid with graphomotor issues. The sensitive microphone allows him to use his voice in a variety of ways, bypassing the need to write (and even draw). For example, there is an app called Omni Note. Say his horticulture teacher draws a picture of a plant cell on the board and tells the class to copy it for a quiz on Monday. This would be extremely difficult for my son to do, and the end result would not look anything like the original.

With the Omni Note app on the iPhone, my son could take a picture of the diagram, draw directly on that picture, add a typed and/or voice message to the picture and send it immediately to his computer at home so he could study it over the weekend. How cool is that?

His teachers are also on board, allowing him to keep his iPhone out and on throughout the day. He doesn’t text and we haven’t given out his phone number, so there is no risk of interruption during class. As part of his sequencing disorder, he has trouble organizing his thoughts into a coherent structure in school papers. One of his English teachers had the brilliant idea of having him research new apps and, as an assignment for class, write out the directions on how to use it (a great sequencing and organizational exercise), and include a paragraph or two about how he, personally, is using the app (a good way to practice his analytical skills).

Right now, our district would have provided him with an iPod Touch, which has some, but not nearly all the functions of the iPhone. The integrated microphone of the iPhone is a big part of the functionality my son needs to make this tool work for him, so we opted to make a family investment.

I understand that this is new technology, which is often scary and expensive for schools to contemplate, but I urge educators to jump on this bandwagon early. The potential of the iPhone for special needs students is vast and untapped, and this generation of students is already immersed in technology. This seems to me to represent the best that technology has to offer — a chance for students to overcome (even bypass) their disabilities and get right to the good stuff — the learning.

How did we justify making the same investment for our daughter? We told her it was because it would be a good tool for her at college next year, and it will be, but really, this is just one of those times when she should be darn grateful for her twin brother.

via Chicago Moms Blog: iPhones — New Help for Special Needs Kids.