The Bravermans are having a baby! How exciting! From the look on Adam’s face in the final episode last spring, it was a real shock to both Adam and Kristina at first. Now they, as well as the whole Braverman family, are delirious with joy that Kristina will be having a baby – and soon! But underneath, there is tension and, like many families in similar situations, real fear as well.
Kristina and Adam know the statistics for having a second child with an autism spectrum disorder. The latest research study (Ozonoff, Young, et al., 2011) released just this August in the journal Pediatrics reveals that the chance of having a second child with an autism spectrum disorder is 19% (previous rates were stated between 3% – 10%). Since four out of five individuals with autism will be boys, is it any wonder that Adam and Kristina are hoping for a girl?
Learning that they are having a baby girl lessens the tension but probably will not totally eliminate it. The research in heritability of autism in families is difficult to ignore, and Kristina and Adam face what other families face when they already have a child with autism spectrum disorder. Some families that have a diagnosed child with ASD will choose not to have a second child at all – in research, that’s called the “stop factor.” To put it plainly, they stop having children.
And that is sad. Because each child – whether they have autism or not, and whether they are the first, second, third or more child with an ASD – should be a joy to behold. For families that have a child with autism, the family gets an extra package – a child that has a very unique way of looking at and reacting to the world. Individuals with ASD offer so much to our world – to parents and professionals alike. Too often, the world only sees the “downside” to autism: the lack of verbal language, the inappropriate behaviors, the social isolation. Professionals (like myself) hold days-long workshops on ASD, outlining the characteristics, teaching strategies and methods to reshape inappropriate behaviors, and how to ameliorate the symptoms of autism. But shouldn’t we be holding days-long workshops on what those with autism bring to our society? The joy of seeing progress, the huge rote memory, the insatiable curiosity, and the pure innocence that catches us unaware and makes us all humble?
Yes, it is a present fear that a family will have a second or third or fourth child with autism (and there are some families in this nation that have more than four children with ASD), and pediatricians and family physicians should be referring the family for genetic testing and counseling, so that the parents can make informed decisions for themselves and for their family. Although there is no definitive genetic marker for autism at this time, current studies are getting closer to capturing its elusive causes. Someday, there will be answers. Families who have a child with ASD (regardless of how many) should be referred for genetic testing, since other, underlying conditions can be identified (which may explain behavior and medical difficulties mimicking autistic behaviors) such as Fragile X, metabolic disorders, Rett’s Disorder, etc. In fact, genetic testing is a procedure that families may want to repeat every 10 years or so, since breakthroughs can happen (and are happening) at any time and in any number of disabilities and conditions.
Should Adam and Kristina be fearful? Not really; the baby is coming regardless of whether she has autism or not. A bit worried? Yes, probably, and totally understandably. But this is a strong family, and the love of their children is deep; they will love this little girl whether she has an autism spectrum disorder or not.
And she couldn’t be born into a better family.
Written by Sheila Wagner, M.Ed.
The High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible. The study revealed a markedly higher risk among younger siblings than had been previously reported.
You can find more information about these findings here:
We are so thrilled that Parenthood has returned for Season 3! The Braverman’s left us with many cliffhangers and we have been eagerly waiting to see how everything pans out!
If you missed the first episode, you can watch it online here.
We would love to share this clip with you all. Jason Katims and the Parenthood writers discuss their process and the birth of the character of Max.
* Unfortunately we were unable to add the video to our Blog, but you can watch it here!
On Tuesday May 10 the TODAY show on NBC aired a discussion of the first comprehensive study of autism prevalence using a total population sample, conducted by an international team of investigators from the U.S., South Korea, and Canada. This study estimated the prevalence of autism spectrum disorders (ASD) in South Korea to be 2.64%, or approximately 1 in 38 children, and concluded that autism prevalence estimates worldwide may increase when this approach is used to identify children with ASD. Watch the clip below.
Intense emotional experiences are difficult for people with autism/Asperger’s. This is very true when the emotional experience involves other people and is not related directly to the needs or desires of the person with autism/Asperger’s. In this episode, Max is unable to relate to the feelings Sarah is experiencing when Amber is in the hospital. Indeed, the disability in being able to connect with other people and to develop an understanding of how someone else might be feeling is difficult and at times even completely alienating. A patient of mine (and an avid “Star Trek” fan) once told me that “having autism/Asperger’s is like being a Vulcan living among Klingons.”
For those of us who are “neurotypical,” we generally get a feeling of connectedness, satisfaction, and comfort when sharing in intensely emotional situations – especially those involving grief and/or death. For people with autism/Asperger’s, they just don’t get those same positive feelings that reinforce the interaction. In fact, a person with autism/Asperger’s will usually find encounters with others who are sharing feelings and comforting one another to be confusing and even frightening. The whole process simply makes little sense to them, and there is certainly nothing that is pleasant or reinforcing about the situation. Trying to get a person with autism/Asperger’s to understand and empathize is to reach the very core of their disability: social and emotional connectedness is the very thing that they are unable to do, or at least not able to do very well. Teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing – it is a waste of time and annoys the pig (at least most of the time).
That being said, there are ways that people with autism/Asperger’s can learn to at least approximate feelings of empathy and compassion. With social stories and direct interventions in specific social situations, as Adam attempts to do with Max in this episode, people with autism/Asperger’s can at least “learn the rules” for how someone “should” act in an intensely emotional situation. When this goes well – when they get the rules correctly – they can feel a great deal of satisfaction with themselves for “getting it right.” As much as they don’t understand why people feel a certain feeling, they do often care if people respond to them in an odd or hostile way. When the important others get frustrated, disappointed or even angry with the person with autism/Asperger’s because they are not empathetic or “understanding” someone else’s point of view, it changes how that important other would generally interact with the person with autism/Asperger’s – and that’s confusing and scary.
When Frankie was very young, we began to intervene and attempt to teach the appropriate response to him when he was in a situation where he should clearly be expressing some empathy but “just didn’t get it.” This meant that we had to be vigilant about monitoring his interactions with others. It also meant we had to be ready to step in whenever there was a situation that provided a teaching moment. For many years, Frankie would not follow through independently on any of our “examples.” Eventually, he began to respond to situations in which he should show some empathy but in a very scripted way. Nonetheless, we would reinforce with praise and attention. As time has passed, Frankie has continued to respond in an almost appropriate way to situations where he should show empathy but he is clearly not directly impacted.
Like everything else with autism/Asperger’s, the key has been the intensity and persistence of the teaching. At this point, Frankie may even feel some semblance of empathy, but I know that he will never receive as much from these interactions as I do. I am grateful that at least at this point he, like Max, can feel good about himself and experience others feeling good about him as he struggles to connect socially in a world that often makes little sense to him.
Written by Roy Q. Sanders, M.D.
Visit our Topic of the Week, ‘How do you manage meltdowns?‘ to hear from the community.
Parenthood is a one-hour drama that follows the trials and tribulations of the very large, very colorful and imperfect Braverman family. Jason Katims, the show’s Executive Producer, has been honored by Autism Speaks. Parenthood airs Tuesday night on NBC at 10/9c.
In this episode of Parenthood, Max, who has Asperger’s Syndrome, did not get invited to a classmate’s birthday party. Max is under the impression that he isn’t invited because Emily, his classmate, doesn’t like him. Kristina and Adam are upset and hurt to learn that their son is being excluded.
Kristina confronts Emily’s mom and is surprised to hear that it was a deliberate choice not to invite Max. Emily’s parents decided that because of all of her struggles, she should be able to have her birthday be a special day, just as she wants it. Kristina can’t handle the reasoning and speaks to Emily. Kristina learns that Emily thinks Max is a sore loser, when playing games.
After another run-in with Emily’s mom, Kristina pleads for a play date so that the children can work out their issues. Kristina says that she is Max’s biggest supporter and Andie agrees with those sentiments. Bother mothers realize that need to work together to support their Aspie children.
How much, is too much parental involvement? Have you ever been in Kristina’s situation? How did you handle it? What are some constructive ways you advocate for your child?
The Los Angeles Chapter held “Acts of Love: Parenthood,” on November 4 that raised $100,000. Hosted at the Creative Artists Agency in Century City, California, the evening was a salute to Jason Katims. He is the executive producer of the NBC television show “Parenthood,” who received the 2010 Acts of Love Awareness award for incorporating an autism story line into the series.
Performers included “Parenthood” cast members Max Burkholder, Lauren Graham, Peter Krause, and Craig T. Nelson, plus Connie Britton (Friday Night Lights), Christopher Gorham (Covert Affairs), Stephen Tobolowsky (Glee), Lorraine Toussaint (Saving Grace) and Brian J. White (Men of a Certain Age), among others.
The event was attended by such personalities as Alyssa Milano, Matt Dallas, Maria Menunous, Jurnee Smollett, Milo Ventimiglia, and Autism Speaks National Board Member Holly Robinson Peete. One very special guest was a woman from Italy who loves “Parenthood” so much that she flew in from Europe just for one night to attend the show!
The audience was moved to laughter and tears about parenting—and the unique joys and challenges of having a child with autism—through music performed by John Doe, and readings from Erma Bombeck, Dana Carvey, Golda Meir, and Bill Cosby, along with several poignant essays written by parents of children with autism.
Many thanks to all who attended, and especially our major sponsors, Creative Artists Agency and NBC Universal Television.
NAPERVILLE, ILLINOIS- Little Friends recently teamed up with NBC’s newest home improvement show, “George to the Rescue,” to complete a home makeover for a well-deserving Lisle family. Patti Boheme, executive vice president of the Little Friends Center for Autism, served as an autism consultant for the episode, which is scheduled to air at 11 a.m. on Sunday, October 31 on NBC 5 Chicago and in other major cities.
The 30-minute show is hosted by home improvement expert George Oliphant who visits families that are dealing with extraordinary challenges, in hopes of improving their homes and lives. This particular home makeover was for the benefit of Theresa and Mersim Kosovrasti and their three sons, Philip, Danny and Alex. The family was nominated for the show by Theresa’s best friend, Dia Rizmani who understands this families struggles.
The Kosovrasti’s oldest son, Philip, now 13, was diagnosed with lymphoma at the age of 2. After extensive chemotherapy and radiation, Philip underwent a bone marrow transplant made possible by his brother Danny, who was just 9 months old and has autism. Philip has been in remission since 2000, but still faces some health struggles as a result of his cancer treatments. Danny, now 11, was diagnosed with severe autism at the age of 3. Danny attends a therapeutic day school and lives at Little Friends’ Lifeskills Training Center for Children with Autism during the week. The Kosovrasti’s youngest son, Alex, 7, was also diagnosed with autism at the age of 4.
Demolition work got underway at the Kosovrasti’s Lisle home in late September. Dozens of volunteers from the Illinois Homebuilders Association donated their time to convert the family’s garage into a sensory room and bedroom for Alex and Danny, and redesigned an upstairs bedroom for Philip. Boheme worked with the project’s contractors to design the colorful sensory room for Danny and Alex. The new room features a sensory swing, a marble panel and fiber optic mats, courtesy of Southpaw Enterprises. The boys’ sensory room and bedroom also features several visual picture systems, designed by the Little Friends Center for Autism.
Crews from the NBC show were on hand on October 13 to unveil the finished project to the family and to thank all of the volunteers who helped to make this local home makeover a reality.
“There is nothing more rewarding than helping deserving families and making their home improvement dreams a reality,” said Oliphant. “I’m thrilled to use my skills to help touch people’s lives, and I’m incredibly grateful to the various local designers and contractors who are generously donating their time and resources to help make these important renovations a reality.”
About the Little Friends Center for Autism
Building on its more than 30 years of experience in providing educational, therapeutic and residential services for both children and adults with autism, Naperville-based Little Friends launched a new initiative in 2004 aimed at expanding a range of resources for this growing population. The Little Friends Center for Autism (LFCA) was founded around a core staff with years of expertise in working with adults and children on the autism spectrum. Today, the Little Friends Center for Autism is nationally recognized as a comprehensive “one stop” resource for autism and provides cutting-edge diagnostic evaluations, training. occupational and speech therapy, consultation services for parents and professionals, ABA, social skills groups, counseling and educational materials.
About “George to the Rescue”
“George to the Rescue” debuted in the popular LX.TV program “Open House”, which airs weekends on the NBC Local Media Stations. It has been expanded to a special half-hour program for the duration of its six-episode run. “Open House” airs weekends on the NBC Local Media stations and via national syndication by NBC Universal Television distribution.
Little Friends has been serving children and adults with autism and other developmental disabilities for over 40 years. Based in Naperville, Little Friends operates three schools, vocational training programs, community-based residential services and the Little Friends Center for Autism. Founded in 1965, Little Friends serves more than 800 people each year throughout DuPage, Kane, Kendall, Will, McHenry and western Cook counties.
NBC Icon Bob Wright in a candid discussion on autism and how the advertising & media business has helped make Autism Speaks a household name
On Friday, October 1 Autism Speaks was featured during Advertising Week, New York City’s preeminent media conference for advertisers. Bob Wright, co-founder of Autism Speaks and former Chairman and CEO of NBC Universal and Vice Chair of GE participated in a discussion about autism and advertising. Bob had one of the longest and most successful tenures of any media company chief executive with more than two decades at the helm of one of the world’s leading media and entertainment companies leading from 1986 to 2007. He was joined by Andrew Robertson, CEO of BBDO Worldwide and a member of Autism Speaks’ Board of Directors, who moderated the discussion.
In the one hour seminar Bob discussed how he has applied his knowledge from the corporate world to the non-profit sector, and how Autism Speaks has succeeded in making autism a household word. Both he and Andrew shared the story of how they started Autism Speaks award-winning Ad Council public service announcement campaign thanks to the support of BBDO, an elite world renowned advertising agency, and the Ad Council. Since its inception, it’s garnered over $249 million dollars in donated media resulting in much needed awareness for families and has ultimately led to fundraising dollars for the needed research into the cause and treatments for autism.
Over the last five years, under Bob and Suzanne’s leadership, and with the help of hundreds of volunteers, Autism Speaks has emerged as the largest autism science and advocacy organization in the world. And autism has moved to the fore of the public’s consciousness – nationally and globally — in large part due to Autism Speaks’ innovative and highly effective awareness initiatives.
Congratulations to Autism Speaks’ Board Member Holly Robinson Peete, who was the runner-up in this season’s “Celebrity Apprentice” and Bret Michaels, who took home the top prize. We are so proud of Holly, who did so much this season to raise awareness about autism and Autism Speaks.
Bret Michaels, who has diabetes and also has a daughter with diabetes, won an additional $250,000 for his charity, the American Diabetes Association. Snapple, the company featured as part of the final task, also donated $250,000 to Holly Robinson Peete’s charity, HollyRod, which helps raise funds for families dealing with autism.
Please join us in congratulating Holly on her success and thanking her for her efforts!
Happy Friday, everyone! I hope you had a great week and are ready for the weekend ahead.
Here are some ideas …
Interested in autism research? International Meeting for Autism Research (IMFAR) brings together the world’s top scientists who will share their latest research into autism’s causes, treatments and diagnoses. It is currently taking place in Philadelphia and we will be updating media coverage and blog posts by scientists here.
Want to Walk Now for Autism Speaks? On Saturday, we have Walks in Cincinnati, Mt. Laurel (N.J.) and Wheeling (W.Va.). Sunday, we have three more in Atlanta, Ligonier (Penn.) and Paramus (N.J.). If you live near one of these towns, visit walknowforautismspeaks.org for more information and join us on Walk Day! We promise a fabulous time for you and your family.
Set your DVRs! On Saturday night at 8 p.m. EDT, NBC is re-airing this week’s episode of “Parenthood”, Team Braverman, which featured members of the family participating in a Walk Now for Autism Speaks event. Check your local listings for show information. Tune in on Sunday, May 23 at 9 p.m. EDT to NBC’s season finale of “The Celebrity Apprentice.” In the LIVE finale “Final Two Brew” Autism Speaks board member, parent and actress Holly Robinson Peete faces off against Poison’s Bret Michaels. Visit http://www.nbc.com/the-apprentice/ for more information.
I hope you and your family have a wonderful weekend!