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Posts Tagged ‘autism’

Happy to report that Augcomm New Jersey attracted 50 attendees and that there were lots of good take-aways for both the parents and professionals in attendance. One of my personal “to do’s” is to add more conversation starters to MJ’s device. He has shown an interest in being more social and we want to give him the opportunity to approach his classmates and others.

Lots of good suggestions for future events from attendees who represented districts including Bernards Township, Lawrence Township, Elizabeth, Berkeley Heights, Bridgewater-Raritan, Piscataway, Middlesex Regional Educational Services Commission and South Plainfield among others.

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This year, I will be shifting the focus of my company,  SpeakerSelect Inc.  to serve the needs of the  autism community. Instead of producing business conferences as I  have for the past 15 years, I will use proven research and  production strategies to develop programs to serve educators,  parents and others with an interest in autism.

The first program, Augcomm New Jersey, is scheduled for September 26, 2011 at the Holiday Inn in Somerset, NJ.   As the parent of non-verbal 9-year old,  I am surprised and  disappointed to see that there are many non-verbal children who  are not making use of tools that are available to facilitate  communication. It has become clear to me that this situation is a  direct result of a scarcity of information on available options.

I am thankful to the speech language pathologists, assistive technology experts, AAC advocates, special education law experts, AAC equipment vendors, parents and others who have offered advice on topic matter for this important forum.   Augcomm New Jersey will offer a process-oriented overview of the steps necessary to create a person-first strategy for the use of AAC tools.  Speakers and panelists will provide participants with practical advice and perspectives on:
 
-The effective use of AAC in the provision of a free and appropriate education
-The elements of a thorough, professionally-conducted AAC evaluation and the importance of an evaluation in making informed decisions
-The increasing availability of mobile AAC applications and its effect on our ability to select and implement effective AAC solutions
-How parents and professionals can collaborate to enhance a child’s communication ability in the short- and long-term

I’ll post additional information on the agenda and speakers, so check back for updates or visit our Facebook events page.

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Temple Grandin spoke yesterday at Colorado State University about the importance of maintaining high expectations for people with autism.  She is truly a great advocate and has done a great deal to help the rest of us understand what it is like to be on the spectrum.  Her speeches and comments, reflecting her own experiences, give us a particularly good perspective on the significant struggles faced by people with Aspergers and others who are generally considered to be on the high-functioning end of the spectrum.

According to the Denver Post article, Grandin says that the biggest obstacle for most autistic students is to learn to do well in social situations.   This challenge is, of course, even more difficult for people on the “low-functioning” end of the spectrum; i.e. those with no verbal speech and who have difficulty attending to an individual or task for even a very short time. 

Although Grandin’s comments in Colorado don’t appear to have addressed the issue of setting social expectations for low-functioning individuals, I’d suggest that it is important not to short-change anyone on the spectrum by giving them a pass in social situations.  My son, for example can’t say “hello” but he accept a handshake or offer a greeting by using his augmentative communication device.  He may never be as socially adept as Temple Grandin but he’ll continue to make progress.

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Sharron Angle isn’t alone in her opposition to mandating private insurance coverage for “autism.”

According to the  Washington Post, Mark Kevin Lloyd, Chairman of the Virginia Tea Party Patriot Federation, believes that families affected by autism ought to rely on charitable individuals and groups to fund treatment. 

Mr. Lloyd acknowledges that  “autism is certainly a heartbreaking condition and the treatments are a terrible financial strain for many families,”  but explains his opposition to the bill, in part, by saying that “government is not an arm of  compassion, and no matter how well intended, can never replace faith-based and private initiatives.”

I’m wondering if Mr. Lloyd believes that compassionate faith-based initiatives are also the appropriate source of funding for treatment of other expensive and heartbreaking conditions including cancer, for example.

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Senators Chris Dodd (D) CT and Robert Menendez (D) NJ today introduced legislation which aims to support autism research and services.  The bill aims to maintain the programs established under the Combating Autism Act of 2006.   Additionally, it calls for investments in services and the creation of a National Institute of Autism Spectrum Disorders within the National Institutes of Health (NIH). 

The great news is that if passed, the bill will create service provision grant programs for states as well as private and public non-profit entities.  I know that autism research is really, really important, but it is nice to see some funding for services in the bill.

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It’s great to see the Las Vegas Sun reporting that an 8-year-old autistic girl earned a black belt in Taekwondo.  Sonya Dilks, who has been training since she was 2-years old, is one of the youngest students to earn a black belt at the DoJang martial arts center in Henderson, NV.

This is an encouraging story because it demonstrates that with the necessary support, an autistic child can excel even in an activity that requires tremendous discipline and focus.  In Sonya’s case, she had the support of her two older brothers who were also enrolled in classes at the center.   Over the course of several years, Sonya’s instructor and her brothers learned that by using colors as code words, they could keep her focused on the task at hand.

Now it looks like Sonya might try tennis or swimming because her parents believe that that these sports are well suited to autistic children.   We have found that MJ really enjoys swimming.  He gets to the pool twice per week, 12 months per year, and has made great progress in swimming independently.  I don’t expect that he will be an Olympian, but he really does enjoy it, and we know that he needs the exercise.

It is sometimes challenging  to find physical activities that an autistic child will enjoy.  It is even more challenging to invest the time, energy and thought necessary to help them improve their skills and possibly excel at their preferred activity.   David Dilks, Sonya’s father, described the process:  “You do have your highs and your lows. It’s like a chess game. You have to think three steps ahead of the child to get them to do what you want them to do…It’s a train, and you have to get it back on the track.”

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According to ModernHealthcare.com the National Institutes of Health (NIH) has created a portal to give autism researchers access to information on more than 10,000 participants in ASD studies.

The National Database for Autism Research portal will be used to capture data from new research and combine it with existing data.  The database was designed to support studies which are expected to be conducted as a result of 50 autism research grants financed with more than $65 million in stimulus funds.

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