PBS NewsHour "Autism Now" Series
http://thedianerehmshow.org/shows/2011-04-20/pbs-newshour-autism-now-series
April is autism awareness month. In the last decade, the numbers of children in the U.S. diagnosed on the autism spectrum have risen rapidly. The Centers for Disease Control and Prevention now puts the rate at 1 in 110. The 6-year-old grandson of former PBS NewsHour anchor Robert MacNeil has autism. So does the 16-year-old son of producer Caren Zucker. In a new series of reports, they draw on their unique perspectives to chronicle the latest scientific and medical thinking about autism. They talk about the effect of autism on families, educators and clinicians.
Guests
Robert MacNeil
journalist and author
Caren Zucker
journalist
producer, "Autism Today"
Related Video
Watch the first of six reports in Robert MacNeil and Caren Zucker's Autism Now series:
Watch the full episode. See more PBS NewsHour.
Producer Caren Zucker and ABC correspondent John Donvan, in conjunction with The Atlantic, profile Donald Triplett, a 77-year old man who is the first person who received a documented diagnosis of autism in 1943:
Program Highlights
Autism Now
There’s a saying among some parents and researchers familiar with autism: "If you've seen one child with autism, you’ve seen one child with autism."
The PBS NewsHour has launched a special series of reports about autism, a disorder that touches many lives across the U.S. and the world. Autism Now takes a uniquely personal look at the effects of the condition on families, schools and communities. Former NewsHour anchor Robert MacNeil's six-year-old grandson, Nick, has autism. Along with producer Caren Zucker, whose teenage son is also autistic, MacNeil produced the series which explores the alarming rise in autism’s prevalence, treatment options, possible causes, and more.
Vaccination Controversy
Diane asked Both Zucker and MacNeil if they think, as many people do, that routine childhood vaccinations may play a role in the onset of autism.
“Absolutely not,” Zucker said.
MacNeil said his daughter, Alison, who is Nick’s mother, does believe that a vaccination played a role in her son’s autism. “As a journalist who's been trained to look at the evidence objectively, while I'm sympathetic and understand her suspicion of that, I have to report that all the epidemiological studies that have been done have found no evidence of the connection,” MacNeil said.
One of the reasons that some parents suspect vaccinations as a cause of the onset of autism is because certain autistic children who have appeared to have developed normally for the first year of life sometimes regress between 12 and 24 months – around the same time they receive standard vaccinations.
Autism’s Effects on Siblings
One of the most poignant moments of MacNeil and Zucker’s series is a taped conversation MacNeil has with his 10 year-old granddaughter Nealy, who is Nick’s older sister. MacNeil says that Nealy “feels great distress about the presence of Nick’s autism in the family,” but it’s also apparent that she feels protective of him.
“Sometimes I worry that he might get lost – ‘cause he doesn’t really know what to do,” Nealy told MacNeil.
“Sometimes, when other people say they have lives that seem perfect and when yours – when yours – you have to do something that you don’t like, you don’t usually want to do it and though your autistic sibling does and it seems unfair,” Nealy said.
“Well, one of the things about life is that we all learn we have to do things we don’t want to do, whether or not there’s autism around or not,” MacNeil said.
“Yeah, but it seems like it happens too much,” Nealy said. “I mean, there’s going to be a few times when that happens, but it seems with an autistic older brother or sister, it always happens.”
Ongoing Funding Struggles
“There's not enough funding, period. There's not enough funding for children with autism,” Zucker said. “All across the country, there are not enough schools, there are not enough teachers and I think these teachers are the unsung heroes of our society, really.”
Zucker was responding to a caller who said she was dismayed at the lack of support for special education teachers across the country.
Comments
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What is the connection between gut and brain function in autism?
My anatomy teacher taught us that our gut contains more nerve cells than our brain, using this comparison as an example to emphasize that quantity does not necessarily translate into quality.
Gene modifications associated with brain development in autism may influence nerve cell development in the gastrointestinal tract as well.
Read more about genes, brain development and autism here:
http://brainmindinst.blogspot.com/2008/07/autism-genes-revisited.html
Oddly enough, even though I am aspergic, I have enough social intelligence to know that not everyone who disagrees with my interpretation of data is an evil shill for Dark Forces...maybe it's because I have enough verbal/mathematical intelligence to know in my upset gut that
.
But on my subject: My diagnosis was professional and from 1992. I try to function as well as I can on The Planet of the Normal, but note with irritation the extent to which Asperger's, usually self-diagnosed or with the dubious help of the intarwebs, has become used by many for boorishness seemingly unrestrained by any attempt on the part of the supposèd sufferer. Simply put, how do we repress the bleating and bad press of these wannabes?
(And yes, Robin, Mr Leacock was a great influence on me.)
"Mainstreaming" my autistic son (PDD-NOS) was a disaster. I tried different school with different programs. The only place we have found success is in a special class for children with ausperger's. The school offers the specialized support staff to help him succeed emotionally, socially and academically. "Mainstreaming" was hard on him, my daughter and our family. It affected my ability to work because the school was constantly calling me. I think "mainstreaming" makes classroom learning difficult for the teacher and the other students. I am saying this as the parent!
I have absolutely no issue with all of the resources and help that we as a society provide for families with autistic children. I feel, however, that while we provide seemingly endless benefits for families that are poor, have disabilities, learning issues, etc. we are beginning to short change the children that are very bright. By "integrating" all the kids into 'main stream' classes, we often ignore the smart kids. School systems are actually beginning to mix kids even more in junior high and early high school years all in the name of saving money. What about the smart kids? They end up in mixed academic classes and stagnate so we all wedge in together.
Why must we all experience everything? Why does EVERY kid have to make the team? What are we teaching kids by always letting everyone win?
I never believed that vaccines could have contributed to my son's condition, because my son, like Caren Zucker's son, was always like he is. I later learned that the Rhogam shot I received during pregnancy was chock-full of mercury. My thoughts changed, and I began research into vaccines. I'd love to know how many mothers of autistic children have Rh-negative blood...that could provide a better picture into environmental factors that may contribute to autism.
In order to add up to the ratio of 1 in 100 or so, you need to include substantial numbers of persons who might be described as "high-functioning". Indeed, by this measure, the vast majority of autistics are high functioning.
There is little literature that follows autistics into the teens and adulthood. There is almost no research that follows high-functioning autistics and their continuing development through their 20s.
Many, if not most, of the problems that high-functioning autistics face while they are growing up are due to the inability of social culture to accommodate difference. For example, one of the biggest problems is that, in school, other kids identify autistics as prey, and beat them up.
And keep in mind that many high-functioning autistics, while wishing for skills and abilities that they do not have (like everyone else), would not wish to be neurologically typical.
The problem with mainstreaming special needs children is that with all the cutbacks, support for these kids in the classroom is not there anymore (they have even eliminated school nurses in the public schools and Charter schools are not required to admit special needs kids) and the teacher whose class size is increasing, often spends all their energy on these special needs kids and the quality goes down for the class.
(It's good to hear Robert MacNeil again on my favorite news program. I miss you!)
Please stress the importance of EARLY INTERVENTION PROGRAMS for children with autism and other special needs. For 12 years I taught in a wonderful program for toddlers which included a speech and language therapist, physical therapist, occupational therapist and me, the early childhood educator. It this classroom setting...six to a class...the children gained tremendously in all areas of development. It was a godsend to the parents as well. Unfortunately, these types of programs are the first to fall under the knife of budget cuts.
What is the prevelence of autism in developing nations? Could there be a connection between our over hygenic mind set and autism? The Worm Theory investigates the possible role intestinal parasites give added immunity via intestinal tract. Irradication of these parasites maybe causing increased autoimmune conditions in the industrialized countries. Could there be a connection between autism and irradication of theres parasites?
I have nephews with autism and Down Syndrome. I am concerned that once these children reach 21yrs of age, they will not have the assistance they have as children. What steps can I take to advocate for continue life skills, education, support?
Diane, I love your show, and really appreciate you dedicating today's show to an issue that really does effect ALL of us.
My step son, Nickie, is autistic. I do understand vacines do not "cause" autism. However, the explanation that does make sense to me is this one; the combination of testosterone and mercury may cause autism. Nickie was a perfectly normal 2 year old, speaking, walking expressing normally. After his vacine, everything changed. We watched an interesting program about a gentleman who can predict behavior based on finger size. Finger size is determined by testosterone. In an effort to keep this brief, my husband was watching and thought- the ratio of 1 in 6 people have high levels of testosterone is the same ratio of girls/boys with autism.
Soon after this program, a study came out that found when mothers have high testosterone, a child may inherit, and when combined with the mercury in the vacine= autism.
I felt this was the answer for what happened to Nickie, but I haven't heard much more about this theory. I'm hoping your guest might comment.
Thank you again!
Tracy, Yardley PA
The underlying current of this show is of parental fears about vaccine safety and the failure to address the epidemic of chronic illness and disability which is stealing the health, academic potential and vitality from our nation’s children. This scandalous crisis has been swept under the rug and is only getting the partial attention it deserves. Diseases ranging from asthma and neurodevelopmental disorders to the emergence of previously rare but serious autoimmune health conditions are rapidly escalating. While questions about vaccine safety are being raised by scientists and the general public, these concerns are downplayed by those with vested interests.
Government and industry-sponsored vaccine safety research deceptively utilizes active placebos, active controls and passive post marketing surveillance, which mask background levels of adverse reactions. Subjects are followed for short time frames in relation to the biological activity and reactivity of the vaccine components, preparations and combinations. The recommended schedule is being administered with little understanding of the possible adverse impacts on rapidly developing neurological and immune systems, which are highly sensitive to exposures to viruses and toxins. The various combinations nor the complete vaccine schedule recommended for young children has ever been examined in its entirety with controlled laboratory experiments with regard to safety. A determination about safety cannot be made until a critical body of independent science on vaccine safety has been conducted. As health care costs for treatment of infectious disease has declined, costs to treat chronic disease and disability have risen, which some research suggests is due in part to a lack of attention to vaccine safety. A recent poll illustrates concerns of parents who affirm that vaccine safety is their number one children’s health concern.
It is unfortunate that Ms. Zucker perpetuates the myth that ABA is the only scientifically supported approach. Even the National Academy of Sciences has indicated that research supports effectiveness of a variety of approaches, "ranging from Developmental to Behavioral". By stating that ABA is the only approach that is supported, it discourages parents from seeking other approaches, such as developmental approaches (SCERTS ModelRDI, DIR), that focus more specifically on the core symptoms of autism (social communication and relationships).
Dr. Barry Prizant (40 years of experience in the field), Adjunct Professor, Brown University
While ABA can teach motor skills, Floortime, developed by the late Dr. Stanley Greenspan, has been especially successful in developing relationships between the child and family members and friends. Please comment on this.
Of course, there's not enough funding. The country is in the midst of a huge financial crisis.
My 18 year old autistic son has done well in our public schools, and has been in marching band and choir, which he excels at. His core academic classes are modified. Transition to adult life is of great concern to us, as his skills are scattered, and he is very naive. More support is needed for adults, with both vocational, and social skills. Also, I heard Caren mention her son's love of elevators. This is an incredibly common obsession for those on the spectrum. My son has filmed over 400 elevators, and is one of dozens of elevator "videographers" on youtube. Check out "gluse", and you'll find him. Great show!
I'm afraid I didn't the interview clip with Mr. McNeill's granddaughter nearly as profound or awe-striking as Ms. Rehm and Mr. McNeil.
What I took from it was an alarming sense that the girl was withdrawing from her brother and felt burdened beyond what a family member would accept from their sibling- much less one who has a disability. I found her comments pretty selfish and while it was incredible she adopted this perspective of looking ahead to the coming decades, comments like "I hope he doesn't want to live with me" left me feeling cold. As the brother of a wonderful autistic sister who was born during my childhood, I have never felt anything except love and tolerance for her, and have always felt compelled to look out for my sister.
I loved the show on a whole, but that interview I felt was rather poorly interpreted. Thank you. -S
My son was extremely quiet and, for the most part, did not initiate any social contact until he hit puberty.
While he was in a self-contained sp. ed. classroom for most of the day, he did mingle with the general population of his high school during lunch time, assemblies, etc. The other students quickly picked up on his sudden interest in the opposite sex and goaded him to flirt with a particular girl who happened to be the daughter of a teacher. There was no inappropriate physical contact, just "flirting". When the girl complained, were summoned to a conference with the principal and were told that my son was in danger of being suspended. When we suggested that the students that egged him on were equally to blame, we were dismissed. Apparently, the school expected my autistic son to exhibit more self control than his "normal" peers!
Two comments:
Although I recognize and appreciate the focus on the effects of autism on children, as the mother of a child with Angelman Syndrome, I am concerned that the attention paid to autism spectrum disorders takes already limited money and resources from other disorders which are rarer, but no less deserving of attention. I truly am sympathetic to these families, but I obviously have a different perspective.
And even though it's tough on the siblings of children with special needs, there can be benefits as well. My other 3 children have learned the value of responsibility and acceptance of differences and will be better adults for having learned these lessons at an early age. I think the key is to find time to spend with each one of them, and recognize how valuable their contributions are to the family. All my kids know that I couldn't do it without them.
Thank you, Dr. Prizant and the other posts for your insight and ability to share your knowledge of the programs and methods available to our families. The information gained is invaluable to many of us. Mr. McNeil's first piece talked about how the entire family revolves around the needs of the child with autism. I have watched many series over the past several years, but this is the first time I've seen anyone bold enough to show the frustrations of a sibling who loves their brother/sister, but needs some "normal life" of their own in the family. As much as our special-needs children need services and attention, we can't allow our other children to be any less special.
Skylar, everybody has their own experience. My son's Asperger's has taken such occasional terrible tolls on his sisters at times. They've watched him, during meltdowns (during some difficult moments/months/times), when he's attacked me, them, and others with such force and violence that they have been absolutely terrified, and he's only 11. While autism may offer a beautiful perspective that neurotypicals may not easily experience, enough rough moments can be overwhelming for anybody...not to mention a young sibling whole life is dominated by one child. The sister, as my daughters, loves her brother and even articulates her worry about the lack of services as he grows up.
This show reminded me of how hard it is for a society, especially a profit-driven society such as the USA, to find the right balance between too little and too much in helping people with all kinds of special needs.
Autism is one of the more striking examples, because it sounds as though many with autism could absorb almost any amount of family and societal resources that are available -- for the life of the individual. And this at a time when over 50 million Americans don't even have basic health care insurance and we are ranked about 29th in the world for infant mortality.
If we truly valued the individual and were willing to shift our massive military spending to helping individuals with special needs, then much could be done. But we know that is never going to happen, leaving us in a zero-sum game for special needs competing with each other.
I have been listening to shows on NPR featuring autism going back at least 15 years. As the rate of diagnosis kept going up to its current level of 1 in 110 I couldn't help but wonder what it was going to take to bring attention to this besides politicians, celebrities, or moneyed families who have someone with autism. Autism Speaks was founded by someone who has been top dog at NBC, GE, and Cox Cable. Would that have happened otherwise? Federal law requires that public schools accomodate these children yet I keep hearing they don't have the funds to do so. How can it be both ways? Unless the child is violent and prone to harming others he or she will be in that building. Administrators, teachers, and aides who pass them around because they don't want to deal with them but want the funds for other uses like balls and bats, well, shame on them. I used to be in the dark about autism as much as anyone even though I have medical dictionaries going back to 1938 with the word autism in it, and that definition is no longer used. I have since been acquainted with several families whose children are autistic and can only witness first hand what their lives are like and the help they need.
I would invite those persons interested in this topic to explore the promising area of Neurofeedback Therapy for autism. It is a form of biofeedback which uses the eeg signal in real-time to give the trainee information about their brain's electrical activity pattern. The info is presented visually and or auditoraly using sophisticated clinical hardware/software so that small changes in the eeg signal are rewarded when they shift towards a more normal pattern. This allows the brain to reorganize itself, resulting often in improvements in emotional stability, speech, cognition, and relating. It is non-invasive, operant conditioning of the brain. Research can be found at PubMed, or at the ISNR.org website, which has an extensive bibliography on a range of conditions including Autistic Spectrum Disorders.
www.autismneighborhood.org has lots of great information, as does the faq section of www.scerts.com