Guest Author - Bonnie Sayers
Since it is April we know it must be Autism Awareness Month. There has been much hoopla the past week over the news that Oprah was devoting a show to the topic of autism. Here is one clip from you tube on a small segment of this episode. I taped the show and viewed most of it while my son Matthew was having his Floortime session in the next room. It seems every television talk show that does a feature on autism shows portions of the video from Autism Speaks, therefore we are seeing the same people talking about their kids and not expanding past that film.
As the single parent of two kids on the spectrum I really have no means to donate to any organization, but Autism Speaks would be the last one I would give a dime to. I am not even planning on going to the Rose Bowl for the annual CAN walkathon and resource fair since they merged with that organization. I also felt quite disgusted by what I read in the book Strange Son by the founder of Cure Autism Now.
I read a comment on a blog entitled, “An Autism Mother Rages: Oprah-Courage, Pet Food and Mercury” that pretty much sums up what I wanted to post on the Oprah message boards:
"By: aspiemomof1 on April 07, 2007 at 04:03pm"
"Its interesting to me that parents of children with cerebral palsy don't demand a cure, neither do parents of children with mental retardation or even ADHD or schizophrenia for that matter.
Parents with these children learn that you treat the symptoms, use therapy to ameliorate difficulties and move on - loving and parenting the best way that you can. Autism has been around a long time, we are just better at diagnosing like so many other things."
I thought while viewing the show that Dr. Anshu Batra seemed very familiar. Her website and clinic are known as Our Special Kids. The website has many sections that are still under construction. In 2005 I took a training course on Floor Time basics through Holding Hands Pediatric Therapy & Diagnostics, located in Los Angeles. Once that was completed my son Matthew had his floor time assessment.
Dr. Batra at the time was associated with the clinic, "Her role as part of the Holding Hands Pediatric Therapy and Diagnostics will be to provide an initial multi-phase evaluation in order to help develop an integrated plan of Medical and Developmental Intervention that is individualized for each child. Her highly personalized approach involving both patients and parents is to demystify the diagnosis of Autism and with the help of colleagues within the environment, provide a comprehensive therapeutic program. Additionally, Dr. Batra hopes to implement ongoing monitoring of Behavioral and Developmental attributes of each child within this setting as part of a long-term care package tailored for each child. Dr. Batra believes that the multidisciplinary approach envisioned by the Directors of Holding Hands Pediatric Therapy and Diagnostics will serve as a prototype for providing a complete and well-rounded care package for children with special needs."
While we were still attending sessions at Holding Hands Pediatric Therapy and Diagnostics there was a note on the bulletin board about her leaving the clinic and opening up her own practice. Holding Hands still does not have a website. Their address is 4221 Wilshire Boulevard, Suite 470, Los Angeles, CA 90010. The telephone number is 323-938-3484. The Director of Clinical Services/CEO is Ziba Nassab, who is also a parent of a boy on the autism spectrum. She is a speaker through The Bureau of Jewish Education of Greater Los Angeles.
Dr. Batra also was one of the audience members during the show dedicated to autism on The View. In November of 2006 Dr. Sajay Gupta of CNN did a story on autism with the house call guest on the topic of autism being Dr. Anshu Batra.
A viewer tuning into the Oprah show on autism, who has no relationship with autism or is even really aware of what it is, states the following in an article on gather.com, "I think that autism is a real problem & we HAVE to find the solution to it" - My response to that was informing the author the comment was "rude and ignorant".
Another opinion from someone who has no association with autism, commenting on the show that The View profiled on autism was posted on a blog. It stated the following, "Another amazing and always intriguing guest was Temple Grandin, Ph.D., a woman who recovered from autism to write books..."
Where do people get their information? I was at a conference this past summer where Temple Grandin spoke, never mentioning that she has recovered from autism. She discusses freely the medication she takes to help her deal with life issues.
I think by all the posts on the Oprah.com message boards that people are giving this woman too much credit for having a show on the topic of autism. There are many other anchors/hosts on television that have had extensive segments on the subject, yet for some reason when word got out that Oprah was doing a show on autism it was like a lightning bolt shot through the autism community with the announcement. This led to many posting their stories and personal data on a message board in hopes that she would be reading them and someone following through with more stories or doing shows on specific issues, age groups, etc.
This is just one person and it is just a television show. Oprah is not going to donate any money to the research or open any school for those on the spectrum. It is a waste of time for these parents to be pouring out their souls on a board assuming that Oprah is going to read it and do this and that. She has no personal connection or real interest in the subject of autism.
The parents on the shows that NBC did back in 2005 were lawyers and scientists who were able to afford moving and implementing therapies in their home that cost more than my monthly rent. The same parent profiled in the Autism Speaks video who appeared on Larry King Live spent about $25,000 to turn her basement into a therapy room.
I was quite surprised that a parent mentioned regularly taking vacations without the child on the autism spectrum. How exactly does a family do this financially and prepare the child for they're not being there, who watches the child? While I agree that I would not venture to try taking my two kids on the autism spectrum on a plane, I did take them on a train down to Sea World in San Diego two years ago. It takes a lot of preparation, planning and visual supports, but can be done and enjoyed by all family members. We are going to do that same trip again next spring break.
None of these shows ever have a table showing some books and listing the titles for the viewers to gain more insight. They never tell about the Childhood Autism Rating Scale known as CARS or the DSM-IV, or where one can obtain these for someone to administer to their child. Why was just the first name given for the parents on the show? It was such a contrast seeing the daughter of Suzanne Wright on Oprah to her frantic mother ranting about autism on The View. Although honestly Katie did look quite agitated like she wanted to have more time to speak and perhaps was biting her tongue. Oprah did not seem to treat her with much respect compared to Dr. Batra with two children on the spectrum.
Did they even show any pictures of Dr. Batra with her children? When I did a search on her it mentions she is the author of Autism 101, yet on Amazon it does not state that. At least they did not have the CEO of Autism Today on, who did actually author that book. I feel she spends way too much time tooting her own horn and hawking books through a constant barrage of emails from her website, hence the reason for not even mentioning her by name!
In my opinion those in the sports community who have children on the spectrum have done far more for the community than any celebrity. Former New England Patriots Quarterback Doug Flutie has created a foundation that "provides funding for services for financially disadvantaged families who need assistance in caring for their autistic children; funds research and education." The Miami Children's Hospital Dan Marino Center hosts a summer camp for children with autism or related disorders.
University of Miami, Autism Assessment Clinic
Child Nett.tv - A first-of-its-kind internet web channel
dedicated to autism and other neurological disorders – by Dan Marino Foundation
There has been funding assistance through Dan Marino Foundation at the summer camp my children attend. Families are asked to compose a letter of thanks at the end of the camp session.
I heard through the grapevine that the eldest son of Oprah’s good friend John Travolta, is on the spectrum. Although not the source where initially I heard of this, here are more details on the topic. "John Travolta and Kelly Preston may be denying their 14 year old son, Jett, proper treatment for what is believed to be autism because of their staunch belief in Scientology." His brother, Joey Travolta is involved with autism as one of the directors of Normal People Scare Me.
It is known that Sylvester Stallone’s oldest son Seargeoh is on the Spectrum and was placed in an institution many years ago. I saw Maureen McCormick (Marcia Brady) recently mention in an interview that she had to put her older sibling, who is developmentally disabled, into a group home. She said it was very hard to do, as it was something her mother never wanted, but due to her death Maureen went that route.
On an Oprah show that Eva Longoria appeared, she mentioned having a sibling with a disability.
Excerpt from visit of Suzanne Wright on The View and interviewed by Barbara Walters –
"WALTERS: Well one of the things that has held us back is that for so many years people were ashamed to speak publicly. WRIGHT: It's devastating if you don't get help. Literally, our lives were turned upside down. Life is very difficult for all of us right now because we live with every hour, every day, hoping that he speaks or gets to where he needs to be. We sometimes have one step forward and 10 steps back. WRIGHT: We really are trying to take a community of such great heartbreak and sorrow and turn it into a community of hope. WRIGHT: We don't know what causes autism and that's partly why we founded Autism Speaks because it's so - they don't have a voice out there. There's so many groups involved in autism. We want to be the national voice. WALTERS: It's not a terrible, necessarily, a devastating sentence."
I first wrote about my impressions of this show in theForum. That show was awful. She was talking so fast and seemed so rushed to get out information on this terrible disorder, talk about melodramatic and clueless!
Oprah said this was her first show on autism, yet I thought for sure she had on Temple Grandin along with her mother to promote their books a year or so ago, or maybe that was the Jane Pauley show?
Autism on Oprah - Michelle O'Neil Blog
Today show Book Club #13 was The Curious Incident of the Dog in the Night-Time a murder mystery of sorts--one told by an autistic version of Adrian Mole. The author of Born On A Blue Day, Inside the Extraordinary Mind of an Autistic Savant was seen on Good Morning America.
School of Shock Mother Jones August, 2007 article
Guidance for Parents from an Expert on Autism - US News and World Report, Nov 1, 2007
Autism 'Epidemic' May be All in the Label MSNBC article posted Nov 4, 2007
Sick School - New York Post article, Nov 5, 2007. Autism Stumps Docs
Adolescence And Autism: A Difficult, But Not Hopeless Combination - Science Daily, Nov 3, 2007
Autism: A New FrontierCBS The Early Show, November 2007- resources and videos on adults and teen who survived being alone for four days in woods
Autistic Kids: The Sibling Problem Time - Dec 24, 2007
As sextuplets achieve milestones, mom notices one boy lags behind Ohio.com, Feb 3, 2008
Family's Struggle: All Six Kids Are Autistic Good Morning America - Feb 17, 2008
Autism Breakthrough: Girl's Writings Explain Her Behavior and Feelings ABC World News Tonight - Feb 19, 2008
Autistic Girl's Parents Respond to Some of Our Viewers' Most Pressing Questions">Feb 21, 2008 ABC NEWS
Wired, March 2008 7 page PDF article on Amanda Baggs - Yeah, I'm Autistic. You got a problem with that?
Technology helps autistic girl CNN Feb 24, 2008
Children with autism may learn from "Virtual Peers" Science Daily, March 4, 2008
Els discloses son has autism, seeks attention for research - Golf.com, March 7, 2008
Woman With Autism Heads Computer Recycler - CBS The Early Show, March 7, 2008
Autism no longer an obstacle for students seeking college degree - Freep.com, March 10, 2008
My 10 year-old wanted to die - ABC News, March 12, 2008 - Loving an Asperger's Child
Music Reaches Kids With Autism - CBS News The Early Show, March 19, 2008
Autism The Musical - HBO, March 25, 2008
Newsweek: Mysteries and Complications March 24, 2008 - Autism is everywhere—once again. Separating fact from fear as the courts and Hollywood wade in.
Autistic poet gives rare glimpse into mystery illness - CNN, March 28, 2008
What autism does to a Mother - Redbook, May 2008
The answers to autism may be in the mind - Good Morning America, May 19, 2008
More questions than answers in autism - USA Today, March 2005
Autism dog not welcome in California
Grandfather builds Web browser for autistic boy
A couple say visiting Disney World helps unlock their autistic son's closed world - Orlando Sentinel, June 2008
"Days of Our Lives’ tackles a real-life drama: autism - June 2008 MSNBC
Arrested development: Day-to-day struggles of autistic children affect entire family - July 2, 2008 - The Capital Times
Shows I have taped on the topic of autism:
February 2005 – Scrubs, NBC autism series
Supernanny – ABC
Jane Pauley, 2005 – autism
Good Morning America – family with five kids on the spectrum
Dateline – chelation
CBS evening news
Autism epidemic – Scarborough country – MSNBC
CNN – autism is a world
Good Morning America – autism
Cspan2 – autism
NBC nightly news
World News tonight
PBS – refrigerator mothers
Montel Williams – autism, April 2001
NBC news – Jan 2003, autism
Kids and Chemicals – PBS
7th Heaven – Tourette Syndrome, Autism
Temple Grandin – Bravo documentary
20/20 Sensory Integration
CNN – O’Donnell Family
The View – autism, Jan 2007
60 Minutes – Feb 2007
Extreme Makeover: Home Edition – Feb 2007
MTV – real life autism, March 2007
Larry King – autism – March 2007
Montel Williams – dangers in school – March 2007
Oprah – April 2007
ABC News – Echoes of Autism, April 2007 three part series
Lifetime – Strong Medicine
CNN – autism mystery
Oprah – Dr. Levine
The following are news articles I had saved and just found again online that are worth reading, printing and saving for insight, reflection and to share with others. They cover a several year time period.
For Siblings of the Autistic, A Burdened Youth - December, 2004 – NY Times
NY Times articles on autism
Lost Boys - Autism and my son Men’s Health magazine
Daniel’s Success Story Mothering Magazine,pdf file
What’s it really like to raise a child with autism Parents magazine 2003
Examining Autism - CBS 2004, New Approaches To Treatment Show Some Promise
Helping Autistic People to Speak Time Magazine, 2006
The Secrets of Autism - Time, 2002
How Krishna Broke Free of Autism - rediff.com
Misunderstood Minds PBS
Autism: The art of compassionate living wiretap magazine, 2006
NPR Q&A with Temple Grandin - autism and language
Grasping autism UCSF article, 2004
Her Autistic Brothers 2007 - NY Times
Chronicles of Ben Chicago Tribune, June 2007
The Geek Syndrome Time 2002
Inside Autism - CNN, 2006
The Problem with Traditional Diagnostic Labels - Scholastic.com, Stanley Greenspan, MD
House calls at the edge of the mind - Oliver Saks and Temple Grandin, Time 1995
Treating EcholaliaJudevine Autism Program at ECRH, July, 2000
NY Times article on mainstreaming - 2004
Employment Brings Independence Roanoake Times – 2005
Should we insist on eye contact IRCA
Boy Wonder - Reader’s Digest, 2006
Boys With Autism Can Thrive in Scouting - With Help - Scouting Magazine, 2006
Government Mapping Out a Strategy to Fight Autism NY Times, 2003
Prevalence of Autism Growing NY Times, 2002
John Schneider promotes AS awareness USA Today, 2003
The Little Professor Syndrome NY Times, 2000
A syndrome with a mix of skills and deficits NY Times, 1999 – Asperger Syndrome
Lifting the Veils of Autism, One by One by One NY Times, 2004
As Autism Cases Rise, Parents Run Frenzied Race to Get Help NY Times, 2004
Science Getting to the Roots of Autism - USA Today, 2004
Why don't we call them quirky? Newsweek, 2004
Finding out: Adults and autism; An answer, but not a cure, for a social disorder NY Times, 2004
How a parent can help Mel Levine tips on transitioning into adulthood
As Autistic Children grow, so does social gapNY Times, 2005
Adolescence, Without a Roadmap
NY Times, 2005
Mtv True Life series
When disabled kids get too old for public education Wall St Journal, 2005
An Israeli Mainstreaming Success
Parents Starting School for the Autistic NY Times, April 1995
UPDATE - April 15, 2007
There is an article online at Essence.com with Holly Robinson Peete discussing her son's autism. "When her eldest son was diagnosed with autism, Holly Robinson Peete’s storybook life was nearly shattered. The HARDWORKING actress even considered walking away from her 12-year marriage. Writer Erin Aubry Kaplan uncovers the strength that made her stay".
I find it interesting that Holly and Rodney Sr. were on Oprah not too long ago and not once was autism mentioned. I wonder if it was by their choice or due to having a show dedictated to autism that Oprah or her staff requested it not be discussed. "But the experience of raising an autistic child has been painfully educational for Holly." I am not sure why it took so many years for this family to publicly mention their child is on the spectrum, but I find it disappointing that it was kept secret and never disclosed. You can leave comments at the article or at Celebrity-babies.com, but note that they moderate and screen their comments.
Another celebrity who has mentioned having a child on the spectrum will be having a book coming out in September. Louder Than Words: A Mother's Journey In Healing Autism by Jenny McCarthy.
Linda Ellerbee is having a segment on Nick News Sunday April 22, 2007 - Press Release with details.
Hollywood Reporter - review of BBC America true story, After Thomas. This airs on Sunday, April 22, 2007 and again on May 5, 2007. You can set a reminder to be emailed prior to the second airing. I highly recommend viewing and recording this movie.
Jenny McCarthy press tour for her new book - Louder Than Words, SEPT 2007:
09/21/07 ABC’s 20/20
09/24/07 Good Morning America
09/25/07 The View
09/26/07 Larry King
The 9-21-07 issue of People magazine has a cover story - Fighting for my autistic son. Jenny McCarthy describes her autistic son's amazing progress – and how boyfriend Jim Carrey helps them both . My autistic son: A story of hope You do need to be a subscriber of People to read the full article online. " When her son Evan was diagnosed with autism, Jenny McCarthy stopped at nothing to get him help. In a new memoir, she describes controversial therapies, his remarkable progress – and how her boyfriend Jim Carrey saw her through."
Talk About Curing Autism (TACA) Video - Hope after diagnosis
Actors for Autism
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.