It’s a Personal Question: Are You Behavioural or Biomedical? Or Both?

Dear friends,
Welcome to this special Autism Vancouver edition of the Autism Today newsletter.  In just two weeks, I will stand up at a podium at the magnificent Vancouver Convention Centre, on the harborfront of one of Canada’s most beautiful cities, and open our 3rd Biennial Behavioral and Biomedical Congress.  I am thrilled by how far we’ve come since our first Biennial Congress.  And imagine our speaker line-up: Temple Grandin’s mom, Eustacia Cutler; Sheila Wagner of Emory University, one of America’s top autism educators; Dr. Bill Shaw, CEO of Great Plains Laboratories, and one of the top advisors to health professionals on the biomedical aspects of ASDs; popular behavioral experts like Stephen Shore and Doreen Granpeesheh; and many others.

I won’t kid you – it’s not easy to combine the true believers from either the purely behavioral or purely biomedical schools of thought at a single event.  Some people feel deeply antagonized by the mere suggestion that both sides could have something to teach us.  Some speakers don’t like the format, some families and teachers don’t understand it.  And imagine trying to explain the significance of such a happening to the mainstream media!  But at Autism Today, we are deeply focused on empowering individuals – people with autism spectrum disorders and their families – on the most complex, personal journey they will face – the path of emergence (some even say, “recovery” and even, “cure”).

The argument over how to define a fulfilled, fully expressed life is as varied and endless as the human race.  Our job, as we see it at Autism Today, is to equip each person and his or her family with information about every legitimate tool they might use to find their own way.  There are not top-down answers in autism.  It’s not only grass roots; it’s deep in the soil.  Success depends in part on a willingness to get dirty!  And on some level, love that process.  Watch the HBO movie about Temple Grandin, or listen to painter Keri Bowers describe her work with her son Taylor Cross, literally spending hours, dipping him bodily into paints, and creating art, or listen to almost any narrative of successful intervention, and you learn – it’s a hands-on process.

Autism Vancouver is still two weeks away.  But it is not too early to give thanks to our champions who will make this such a special event.  None of this could happen without a dedicated staff and the support of our Autism Today friends and family.  We especially wish to thank Keri Bowers, founder of Normal Films, and director of Normal People Scare Me, Debbie Hosseini, author of our newest title, Artism: The Art of Autism – both tireless champions of the arts as a vehicle of emergence — Kelly Lebrock, who has donated her star power and agreed to act as honorary hostess of our Gala, and Diana Graling, of Helms-Briscoe, whose invaluable logistical counsel is helping us to run a tight ship in Vancouver.

For those unable to join us in Vancouver, I hope you won’t mind this special Congress edition of the Autism Today newsletter.  Please remember we will be broadcasting segments of the Congress via webcast every day of the Congress, April 7-9, and for those who wish to experience the complete program, we will make this available in DVD for purchase.

Soon, we will have the capacity in place to make all of our programming available by live webcast, so you can enjoy and benefit from it without the expense of travel, and in the company of family, students or colleagues.  Keep an eye on our newsletters for announcements about these enhancements to our program offerings.

Thank you again for your friendship and support.

Warm regards,
Karen?

Free Live ABA Webcast with Doreen Granpeesheh, Founder of CARD

You’re invited to join us for a Special Live Webcast on March 14th, 2011 presented by renowned Dr. Doreen Granpeesheh on Applied Behavioral Analysis (ABA): A Flexible and Affordable Intervention for Autism! This web-cast is being brought to you from Autism Today and is Absolutely FREE! With the 3rd Autism Vancouver Biennial Congress just around the corner we’re extremely excited to give you this no-cost gift featuring one of our amazing event speakers.

The Live FREE Webcast Details are Listed Below:

Applied Behavioral Analysis (ABA): A Flexible and Affordable Intervention for Autism
Dr. Doreen Granpeesheh, Executive Director and Founder of the Centers for Autism and Related Disorder (CARD)

March 14th, 6pm PST / 7pm MTN / 8pm CST / 9pm EST

The webcast can be viewed at the following URL:
http://www.ustream.tv/channel/autismvancouver

As you know, Doreen is one of the world’s leading ABA practitioners and will be a featured speaker at the Autism Vancouver Biennial Congress, this coming April 7-9 2011!

What you will learn on the Live Webcast…

Internationally-renowned pioneer of Applied Behavioral Analysis (ABA), Dr. Doreen Granpeesheh, provides a practical, informative introduction to this powerful treatment methodology. Widely practiced in North America, intensive ABA has been scientifically proven effective as a means of improving social and intellectual function in pre-schoolers.  Dr. Granpeesheh will also explain how  online tools and services now enable parents and educators to apply ABA more affordably and conveniently.

See you there!

NEW! Parents and Practitioners Employ web-based Skills™ for Children with Autism

NEW WEB-BASED Skills™ GIVES PARENTS AND PRACTITIONERS POWER TO RECOVER CHILDREN FROM AUTISM
By Daphne Plump

There are quite a few web-based tools on the market that are meant to treat children with autism and related disorders. And as with everything, another one just emerged – Skills™. But unlike all of the others, that shall remain nameless, Skills is not only a web-based tool for parents and practitioners, but gives committed users the power to recover children from autism….really.

The Center for Autism and Related Disorders (CARD), considered the world’s largest autism treatment center that provides state-of-the art therapy, recently released two web-based programs that go hand in hand, while at the same time, can work alone.  CARD eLearning™ and Skills™ provide training to parents and practitioners and allow the ability to assess and design treatment for children with autism and related disorders. Both of these programs are based on the principles of applied behavior analysis (ABA), which has been empirically proven to be the most effective autism treatment and is recommended by the American Academy of Pediatrics and the U.S. Surgeon General.

Journalists seeking access to the CARD e-Learning and Skills programs can obtain free passcodes by calling (877) 975-4559.

CARD eLearning (www.cardelearning.com) is a 40-hour online training course designed to facilitate effective intervention for children with autism by equipping users with foundational knowledge in ABA. The training consists of nine video-based training modules which feature online note taking, quizzes, a final exam and certificate of course completion.

Skills™ (www.skillsforautism.com) is an affordable program that provides everything that educators of children with autism need to assess a child, design a curriculum, and implement a comprehensive behavioral treatment program in one easily accessible location. Skills also provides charts and graphs that track treatment progress and the impact of various events (including other treatments and life events) on the child’s progress.

Check out Skills and CARD eLearning’s websites if you’d like to learn more about them. Or, you can call (877) 975-4559 for free passcodes to test drive these programs.

77 Ways to say “Good Job”

Everyone likes positive pats on the back, recognition and acknowledgement for a job well done.  It’s especially vital when raising a child with an autism spectrum disorder.  We should be mindful that sometimes, with our children with ASDs, the label we use can be the opposite of a back-pat.

When I founded Autism Today, I asked my sister Susan to create a logo that would be overwhelmingly positive.  I asked her to use a star, like the gold star we all loved to get from our teachers in school, instead of the puzzle piece.  Autism Today is about celebrating the gifts of our children on the spectrum, not focusing on what we all know and understand to be real challenges.  There’s no argument autism is real and, for those without the necessary resources, overwhelming.  But all of us, parents and children with ASDs, must focus on the unique and often amazing attributes – the positive side – of ASDs, first to cope, next to survive, and, finally, to thrive.  I raised my son Jonny to think of his autism-related skills as wonderful gifts.  When he was born, I could never have imagined how much fulfillment and fun Jonny would bring into our lives as a family.  Focusing on his ASD as a gift, rich with possibilities, was an important aspect of that journey.

I remember people challenging me that no one would know we were about autism since we didn’t use the puzzle piece like everyone else.  My thinking has always and will always be to accentuate the positives and eliminate the negatives.  That old Johnny Mercer tune was a great favorite of my beloved father, Jack Simmons, a World War II veteran, pilot and aerospace engineer.  Attitude got him and many hundreds of thousands of military folk through a terrible time in history.  It can be easy to be overwhelmed by the trials in our lives raising a child on the spectrum.  But inside that child is a treasure chest of possibility.  It is our duty, those of us who know and love these children, to find the gems within – and to do that, we must always, every day, focus on unlocking those gifts.  To do it, we must always accentuate the positive!

My dear friend, Stephen Shore and I were talking about how positives are so good for our kids with autism, especially when accompanied with a red skittle, and sometimes teachers can get carried away with saying “good job” to often so we came up with 77 ways to say good job without being redundant.  I thought I would share them with you all.  Its rather cute.  Enjoy and don’t forget to get the red skittles!

77 ways to say “GOOD JOB”

  1. SUPER
  2. That’s RIGHT
  3. That’s good
  4. GOOD WORK
  5. Perfect one
  6. You’ve just about got it
  7. THAT’S IT
  8. Now you’ve figured it out
  9. GREAT
  10. I knew you could do it
  11. Now you have it
  12. Good for you
  13. Couldn’t have done better myself
  14. That’s the right way to do it
  15. You did it that time
  16. You’re on the right track now
  17. Nice going
  18. WOW
  19. That’s the way
  20. Keep up the good work
  21. TERRIFIC
  22. That’s the way to do it
  23. SENSATIONAL
  24. EXCELLENT
  25. PERFECT
  26. Much better
  27. WONDERFUL
  28. You did that very well
  29. FINE
  30. OUTSTANDING
  31. FANTASTIC
  32. TREMENDOUS
  33. That’s great
  34. Right on
  35. Superb
  36. Good remembering
  37. MARVELLOUS
  38. I like that
  39. Way to go
  40. Good thinking
  41. Good going
  42. Very good
  43. You remembered your sound
  44. That’s really nice
  45. Uh huh
  46. That’s a good one
  47. Yes
  48. I liked that sound
  49. Good
  50. Nice
  51. You’re really working hard today
  52. You are very good at this
  53. I’m happy to see you working so hard
  54. I’m proud of the way you’ve worked today
  55. You are doing much better today
  56. That’s the best you have ever done
  57. You’re doing a good job
  58. That’s quite an improvement
  59. You’re getting better every day
  60. That’s the best ever
  61. You must have been practicing
  62. You’re really going to town
  63. ow that’s what I call a fine job
  64. You’re really improving
  65. You’re doing beautifully
  66. You’ve got that down pat
  67. You certainly did well today
  68. Keep it up
  69. You did a lot of work today
  70. I’m very proud of you
  71. Now you have the hang of it
  72. You’re doing fine
  73. You are really learning a lot
  74. You out did yourself today
  75. You figured that out fast
  76. That kind of work makes me happy
  77. That’s it

Canucks Autism Network

It was recently our pleasure to speak with Jodi Simkin, Executive Director of the Canucks Autism Network (CAN).  Canucks Autism Network’s mission is to provide year round, innovative, high quality sports, recreational, social and vocational programs for individuals and families living with autism, and to build awareness and capacity through community networks across British Columbia.  Jodi took on her job in 2008.

But what a track record!  In just 2 years, CAN has grown from a relatively small, locally-focused charity, primarily backed with Canucks resources, to a major force in the autism community in western Canada.  Since 2008, Jodi has overseen the planning and implementation of a variety of grassroots-driven programs and services that now span the entire province.  Exciting examples include Understanding Minds, a high school social network program, and Soup from the Soul, a pre-vocational/vocational training program for young adults.  Congratulations Jodi and everyone involved in the Canucks Autism Network.  We hope to find ways to collaborate with you.  For more information, visit: www.canucksautism.ca

How Should We Honor our Veterans affected by Autism?

To all the service members, veterans, and military families in the Autism Today community, I wanted to thank each of you again for what you do.  As our next conference, Autism Calgary, approaches (November 22-23 at the McEwan Conference Center at the University of Calgary), I am mindful of the special impact of autism on the military.

In Canada and the US, Veteran’s Day (or Remembrance Day, as we call it in Canada) is a day to honor the valor, sacrifices and excellence of our military.  On the most personal level, we mark the day by reaching out to family members and friends who risked all to secure our freedoms and make our unmatched quality of life possible.  For too many, the day is one for mourning, for lives lost – literally, or in terms of disability, mental illness and disrupted lives.

We celebrate on November 11th because that was the last day of “The Great War,” as people of the time called World War I.  What is poignant about that now abandoned moniker, to me, is that so very often, when tragedies happen in our lives, especially unforeseen ones, they seem impossibly big.  We simply cannot imagine anything worse than what has befallen us.  Yet, only 20 years later, European nations fell upon each other again, this time using even more dreadful weapons.  We stopped counting after the second “big one.”

Did you know autism affects military families at much greater rates than the civilian population? Autism has in increased astronomically in the past 20 years truly in epidemic proportions.  The Centers for Disease Control estimates autism spectrum disorders now occur at a rate of 1 in 110 childen in the US.  It is the fastest growing disability with 90% of the costs in adult services.  And in the military, the rate is shockingly higher.  One in 88 military children are born with some form of the condition. A Harvard study estimates the lifetime cost of services required by a person with autism exceeds $3 million.  Early intervention can reduce this cost of lifelong care is decreased by 2/3.  Early detection, diagnosis and intervention, save billions of dollars in adult care and dramatically improve quality of life for all concerned.

Without resources, a family dealing with autism can feel their world has collapsed.  Imagine the military family confronted with a newborn child not yet even diagnosed as being on the spectrum.  Deployments, absentee parenting, travelling, always being placed on the bottom of wait lists, continual relocations and adjustments to new cultures all heighten the impact of this already poorly understood disorder on military families.  Children with autism have gigantic difficulties with transitions; they must have routine and structure.  Needless to say: autism, already a “great war” for a healthy, well-situated family, can be a kind of Armageddon for the military family.

What needs to be done?  I’m no expert in public policy.  I only know that if we do not address this crisis at the front end, the costs – in the form of institutionalize adults with undiagnosed and untreated autism, disintegration of families, substance abuse and even criminality – will be epic.  This is one reason I am such a believer in what Dr. Doreen Granpeesheh, founder of ACT for military families, is doing to help the real “war-zone” with the families fighting for the support they so desperately need for the autism diagnosis in their families.  That’s one reason we are bringing Dr. Granpeesheh to Calgary, Alberta along with Dr. Temple Grandin, David Kirby and Dr. Stephen Shore, next week.  Its time for families to get the well deserved attention and support they need.

As I think about my own experience with my son, it occurs to me we should think first about the “how” of the solution – those characteristics that will let us know we are on the right track.

  • Intervention: Neuroplasticity — the brain’s ability to be malleable and form new pathways, the physical work of learning — is at its peak under the age of five.  For this reason, early intervention is absolutely vital to equip the child with autism with all the tools necessary to live to his or her full potential.  Resources focused on early diagnosis and intervention would at least equip military families to understand their child’s condition and quickly adopt an integrated strategy for managing it.
  • Integrated: A fully integrated approach to therapy and treatment is imperative right when the child is first diagnosed.  The goal of behavioral, developmental, and other educationally based interventions is to change a child’s behaviors by working on their communicative, cognitive and social skills, thereby improving autism symptoms rather than to cure autism. The strategy will include not only behavioral interventions, but nutrition, choice to vaccinate, exercise program, all closely tied to the child’s unique mental and physical characteristics and needs, and, of course, those of his or her family. The most important element of any of these interventions is that the practitioner is the key.
  • Instruction: We must grow a professional cadre of specialists in the care and treatment of families affected by ASDs.  Also, caregivers and family must all work closely with doctors, social workers and other professionals to fully understand autism, the way it expresses in their child or sibling, the special pressures a family member with autism creates (including difficult feelings ranging from resentment, to guilt), and the way the overall family dynamic must adapt to the needs of their special child, while securing the wellbeing of the family unit.
  • Intensive treatment:  Every child has different needs, and will require a different combination of resources.  Families need to know the “menu” of behavioral and biomedical options.  The American Academy of Pediatrics specifies a variety of treatments that have been found effective, including ABA, DIR, RDI, TEACCH, SCERTS, and PRT. There are a variety of biomedical therapies that appear to be promising.  Each family needs to know all their options, and experiment until they find the combination that works.
  • Inspiration:  Families affected by autism need hope, heroism and role models.  Nowhere is this more true than in the military.  There are a military mom long separated from her spouse by deployment, and her friends by relocation, is literally living on fumes.  Hope, love, and passion for her child – these are what keep them going.  They need their leaders’ recognition, support and – in pursuing solutions – their statesmanship.

When my son Jonny was diagnosed with autism, I did what any military mom does: I deployed. It was the early 1990s.  There may have been about a dozen good books on the subject, few specialists, and little in the way of reliable public health resources.  People did not even really know how to diagnose, or understand the incredible diversity of the autism spectrum.  Fortunately, we were financially secure, so it became my mission to know everything I could possibly know, and to share it.  Fifteen years later, I’ve authored 8 books, and manage one of the world’s most comprehensive, free sources of information about all aspects of autism, aspergers and other ASDs.  I believe my military training played a role both in my attitude and giving me the problem-solving, improvisational skills, and determination to get the job done.

My dad fought in Okinawa during World War II and his memory and service are dear to my heart.  I myself serviced in the US Air Force as a Medical Service Specialist at a base in Florida for about 5 years.  Like so many of you, I have good friends and family members serving in Afghanistan.  The sacrifices military families make are well known and, I think, better appreciated than they were a generation ago.  But we have only recently begun to talk openly about the mental health issues that bedevil entire families during a career in the armed services, their impact on military performance and quality of life, the ability of fighting men and women to return to normal productive lives, and the cost of mental illness on communities and economies.

To our military families struggling with the autism epidemic, we must honor Veterans’ Day with more than flowery oratory.  Autism needs to be part of this growing awareness of the mental health issues that impact our military differently than the rest of us. Our military leaders and elected officials must set the tone of a national discussion about this sometimes devastating condition, and the tragic impact it is having on our warfighters.  They must chart a path forward to equipping their soldiers and their families to adapt to the challenges of autism, and have access to the quality of life for which they make so many sacrifices.

With love,

Karen Simmons

Founder & CEO Autism Today

Chicken Soup for the Soul, Children with Special Needs

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