Autism BR: Recent Episodes
Stan Goldberg
When a family member is diagnosed with Autism the world stops. It is sometimes hard to function. This briefing room can be a first step in helping to understand that the world is not ending but needs to be approached differently. There is no one answer with Autism, every child is different, you are your child's best hope.
For those people who wish to understand how the mind of a person with autism works Duje Tadin has published new research that teaches us something about the workings of the mind of a person with autism. Duje is a professor at the University of Rochester and he joins Senior Dad Stan Goldberg to discuss his new research and its implications for those with autism.
When we are pregnant we visualize different teaching situations that we will explore with our future child. None of us could anticipate the unfamiliar territory that confronts a parent when their child is diagnosed with autism. For parent Tammy Graham the diagnosis of autism changed her lifestyle. From a full-time working parent she became a stay-at-home parent who utilized many different strategies to teach her daughter. Not long ago she was unsatisfied with her daughter's progress and started using the family's iPad to help teach her daughter. New doors opened. The teaching accelerated. Tammy Graham joins Senior Dad Stan Goldberg to share her journey into using technology to teach her child.
For those people who are working with children who have autism the iPad has become a main tool. A nonthreatening device that is both light and reasonably inexpensive has changed the way therapists, teachers and parents have taught their autistic learners. This device is changing the way special education departments in school’s have been working with their students. These current actions definitely foreshadow the teaching methods of tomorrow. Dawn Ferrer is a speech therapist who is also an iPad developer. She uses the iPad in her practice and teaches her clients families how to use the iPad at home. She joins Senior Dad Stan Goldberg to discuss the iPad, it’s uses and shows us how it can be used in teaching. Dawn Ferrer, I have an app to you.
Max Gibson goes to school in New York State. Max has hearing issues. His father Tom tried to get the school district to give Max the support he needed in order to learn. Things didn’t go as Tom Gibson had envisioned and soon he was embroiled in complicated meetings that delayed his son’s education. Tom Gibson wrote a book called” Lost in the system” where he describes some of the issues he encountered. He joins Senior Dad Stan Goldberg to discuss some of the issues that parents face when trying to get services for the children who are in special education. Tom Gibson: “ Not Lost Anymore”
“Home for the holidays?” Or, “let’s get this party started?” The holidays can be a stressful time for families under the best of circumstances. For your child with autism, they can be particularly difficult. Familiar routines are out the window and unfamiliar – and sometimes unfair – expectations arise at every turn.
Listen in and hear how to empower your child with autism during this bustling time. Internationally known award-winning author and columnist Ellen Notbohm (Ten Things Every Child with Autism Wishes You Knew) and San Francisco special needs activist Katy Franklin join “Senior Dad” Stan Goldberg in the Autism Briefing Room, explaining how the holidays effect their children with autism and their friends and families. Hear tips what to do before and during holiday parties and strategies for graceful departure. What to do about gifts and gift lists, and how to handle the lure of those attractive TV commercials? Ellen and Katy share some of their experiences with their children and what works for them. Some of the lessons we learn apply to teaching and handling all children as well as helping us begin to understand the challenges of a family with a child with autism.
The last twenty years has shown an increasing awareness of autism. A variety of programs to treat and aid children with autism at different stages of social development have only begun to emerge over the last five years. One such program is beginning in Thorne Hill, a suburb of Toronto. Lital Rotman Gurneir is starting “Social Butterflies” an ABA-like program targeting children with Aspergers playing with typical children to learn social skills. She joins Senior Dad Stan Goldberg to explain the program and its goals just before the launch of Social Butterflies.
How do you stand back and let your grown child go out into the world? Does it tug at your heart? Now add to your emotions the fact that your child was born with autism and you have been very closely guiding his progress for 19 years. That’s what Ellen Notbohm is going through as she is watching her son Bryce graduate from high school. Bryce views himself as “a man, not a man with autism”. Ellen has written about Bryce in her three books and has been a frequent guest on the Autism Briefing Room, speaking about autism and her family’s journey. Ellen Notbohm letting go.
Three years ago Autism Speaks awarded Dr. Pamela Wolfberg of California State University at San Francisco the 2008 Research Award for Clinical Research for a project using Wolfberg’s Integrated Play Groups™ (IPG) model. This research involved typical children playing with children with Autism at an after school program. Now that research project is completed, Mariel Goldberg, age 9 ¾, one of the expert players that participated in the project joins me to share some of the things she and the other participants learned. (Full disclosure, Mariel is also my youngest daughter.)
Lynn Koegel Co-Director of the Koegel Autism Institute of the University of California at Santa Barbara discusses the early results of new research on Autism.
When faced with difficult conditions humans turn to humor. What better way to relieve tension than a nice solid laugh? Two parents have harnessed humor to teach school districts and parents how to work together to help extra needs children be successful in school. Their video spoof of an IEP meeting is a hoot (shutupabout.com). Pat Terrasi Konjoian and Gina Terrasi Gallagher join me via Skype video to share what they are doing and in the process relieve my tension with laughter. Using laughter to build bridges and open hearts “The Movement of the Imperfect”.
Sound is a very intriguing property. The quantity of words we hear from birth to age three determine our vocabulary, potentially for life. This was learned from Betty Hart and Todd Risley’s research published in 1995. New research has found a way to analyze children's speech patterns to determine if the child has Autism. The tool analyzes the social behavior of parents and children while they converse. Joining me to discuss the implications of this research and other related research is Steven F. Warren, Ph.D., a member of the team that developed the research. He is the Vice Chancellor for Research & Graduate Studies and Professor of Applied Behavioral Sciences at the University of Kansas.
What is a learning disability? Can you properly identify a learning disability? What should we do when our children seem to be behind in reading or math? Is it really a problem or is it just our imagination? How do we get our children through the education process with their egos intact? Deborah Waber, researcher, clinical neuropsychologist joins me to discuss these issues among others and her new book, “Rethinking Learning Disabilities: Understanding Children Who Struggle in School”.
How do you change the culture and practice of a school district’s special education department? San Francisco is trying to do just that after committing to enacting some of the recommendations of the Urban Special Education Leadership Collaborative audit which found many issues with what San Francisco was doing in special education. Joining me is Richard Carranza, Deputy Superintendent of the San Francisco Unified School District, and Cecilia Dodge, Assistant Superintendent and Director of Special Education and SELPA to explain what the District is doing to foster inclusion in all of the schools of the District and how this is going to effect almost every classroom, teacher, and child in the district.
In 2008, the San Francisco Unified School District's Special Education department decided to illegally censor the Community Advisory Committee for Special Education’s newsletter. This Committee is state-mandated to provide oversight of SFUSD’s special education department and reports directly to the School Board. The School Board did not support the Committee and allowed the Committee to be censored. As an aftermath of this cataclysmic event, the director of special education retired. Shortly after that, the head of the Special Education Local Plan Area (SELPA) also left the school district. After one interim special education director, in the spring of 2010, the school district engaged the services of the Urban Special Education Leadership Collaborative to audit SFUSD’s special education department. David Riley, Executive Director of the Urban Special Education Leadership Collaborative, joins me to elaborate on this far-reaching audit.
For over 30 years the Hanen Center of Toronto Canada has been training audiologists to work with parents to improve their children’s language skills. In 2000 they started a program aimed at teaching parents of children with autism how to work with their children to improve their child’s language skills and social interactions. The program is called “More than words®” designed to work with younger learners. More than words was followed by a program designed for older children call “It takes two to talk®”. Elaine Weitzman has been with the Hanen Center for over 25 years and is currently their Executive Director. She joins me to share why the Hanen Center focuses on teaching parents to work with their own children rather than working with the children directly. Elaine Weitzman, more than words.
As the autism epidemic continues more autism specific insurance laws are being debated in state legislative houses across the nation. No one is more familiar with the intricacies of autism insurance legislation then Lorri Unumb author of the South Carolina Autism Insurance law, which was one of the first autism insurance bills in the nation. Lorri is now senior policy adviser and counsel for Autism Speaks. She joins me to discuss the current bill proposed for New York State and some of the issues related to having autism therapies covered by insurance. We discuss the potentials of the Wellstone-Domenici bill that was passed by Congress and also discuss how I D E A needs to change and fresh ideas about a federal law that could be crafted to be autism specific.
Sally Colletti and Katy Franklin are advocates for children with autism. They are tough and relentless when fighting for the civil rights of those children they help. When helping their own children they have more fears and concerns than parents with typical children. They both join me to talk about some life experience stories, some political musing, and a couple of shots at Autism Speaks. Colletti and Franklin calling it “like it is”.
Raising a child with autism is a constant learning and teaching process. Not only do the parents of a child with autism have to learn from their child, they also have to teach the community how to coexist with their child. Ellen Notbohm has been learning, teaching, and sharing with the autism community since her now 17-year old was identified at age three. Ellen has appeared on the Autism Briefing Room over the past three years and I have enjoyed the visits. In this show Ellen tells us about her new book “1001 Great Ideas for Teaching and Raising Children with Autism and Aspergers “ a revised and expanded 2nd edition and gives us a peak of what it was in like the olden days of autism treatment 13 years ago as compared to now.
As the Center for Disease Control in Atlanta Georgia places autism incidence in the United States at 1%, anecdotal evidence places the number much higher. As the general population begins to come to grips with the alarming growth in autism prevalence, different strategies are being tested to educate the public on how to work with children with autism and also how to help these children develop.
A year ago, Pamela Wolfberg of San Francisco State University was on the Autism Briefing Room and shared with us the news that Autism Speaks had awarded her the 2008 Research Award for Clinical Research for a project using Wolfberg’s Integrated Play Groups™ (IPG) model. That research started first at Fairmont School, San Francisco and later at Grattan School, San Francisco, where it is now in its second semester. Pamela connected up with me via Skype video to update me on the exciting progress of the program at Grattan School and around the world.
With autism reported by the Center for Disease Control to be one percent of our population and anecdotal accounting by teachers of much higher numbers, we need to focus on strategies for early diagnosis and treatment. Lynn Koegel Co-director of the Koegel Autism Research and Training Center of the University of California, Santa Barbara joins me in a Skype video-chat to discuss Pivotal Response Training, which has been described as a “kindlier and gentler ABA”. We also delve into several topics including some exciting new news about very early diagnosis and treatment (six months of age) of children with autism.
Tremendous resources are being spent on finding the cause and cure for autism. As necessary as this is, recent statistics released by the Center for Disease Control declaring that 1% of Americans have autism, clarifies the need to focus on day-to-day strategies for all of us to cope with the disease. Jed Baker is Director of the Social Skills Training Network, a private organization. He also performs a similar function for the Millburn, NJ public schools. He is the author of “No more meltdowns” a guide for working with children. Jed Baker “the practical practitioner”.
Pat Howey is a nationally known advocate for extra needs children. She has appeared on Senior Dad shows several times over the past three years. In this video check-in we catch up on our lives and discuss Response to Intervention (RTI) and is it being used improperly to delay treatment of extra needs students. Abuse or ignorance? That is the question.
The state of special education. This report covers special education , due process, inclusion, parent communities, and trust. Colin Ong-Dean, researcher and author of Distinguishing Disability: Parents, Privilege, and Special Education, has investigated special education and due process. Two of our panelists have children in special education. Both have fought to get the services their children justly deserved. Katy Franklin has not engaged in litigation but she effectively points out her child’s legal rights. Robin Hansen has fought the system through due process hearings and eventually won the services her children needed. This report gives you real-life instances of the conditions within our schools and special education. Some of it will make you laugh, some of it will get you angry, and some of it will make you cry. But this is a day-to-day situation of over 5,000 families every day in San Francisco, and millions around the country.
We first heard Katy Franklin’s story about her son Alex’s autism two years ago. We learned about his diagnosis and the issues that developed for him and the issues Katy encountered with “the system” while advocating for her son. Now we have a two year check-in. Alex has completed the third grade and Katy has encountered a few more hassles with the School District. We hear what this nationally known advocate for special needs children has experienced in “ The sun will shine brighter.”
How does someone become the mother to two children with autism? If you are Felicia Burk, you adopt them. Felicia has long been an outspoken advocate against restraint and isolation of children with autism, long before her son we restrained and removed from school by the police in handcuffs. For many years she has been a Behavior Analyst, at times working for the very school system that abused her child. This healthcare professional believes that her firm but gentle approach that she advocated to parents throughout her professional life is being effective in maximizing her children’s potential. Felicia shares with us the joys and the frustrations of teaching children with many severe issues how to cope with life. Felicia Burk- Wings and pedestal optional.
What is adaptive technology?
In every individualized-education-plan (IEP) meeting the question must be asked, “Can this child benefit from an adaptive technology?” What are these technologies and how can they be used to help students learn? Gayl Bowser is an expert in adaptive technology. She has been working in the field for over 20 years and was coordinator at the Oregon Technology Access program. Gayl joins me to discuss adaptive technology and make me aware of its uses and its limitations in today's modern world. Interestingly, over 70% of all IEP’s have goals that involve writing. Gayl heads Assistive Technology Collaborations, a consulting firm. Gayl Bowser, can technology help?
The new chairperson of the Citizens Advisory Council for Special Education of the San Francisco Unified School District panders to none. Robin Hansen is an online columnist for the San Francisco Examiner and has revealed situations where the School District is not following the law. Robin joins me and we discuss what, if anything, is changing for special education in our schools and what progress schools are making towards giving civil rights to all students in the system. How typical kids are benefiting from special education funding, how money is going down the drain and what is really going on in Oz. Robin Hansen- Naming names and speaking out.
Pamela Wolfberg of San Francisco State joins me to share some exciting news. Pamela is an internationally know expert on integrated peer play groups for children with autism. I interviewed Pamela in February 2007 ) . Autism Speaks has awarded Pamela the ‘2008 Treatment Award for Clinical Research’. The award enables three years of research about the benefits of integrated peer-play groups at after-school programs. Autism Speaks, who historically has been funding research in the causes of autism, now has funded this clinical research that is directed at treatment and building life-long community patterns. I wrote about my daughter's experience while visiting an integrated play facility in April 2007, one of Pamela’s earlier successes. This is a very important step in addressing the Autism epidemic and I applaud Autism Speaks for taking this important step. Good move Autism Speaks!
As soon as Debra Harris heard the diagnosis confirming her son’s autism, she opened her cell phone and started calling. She has been getting and sharing information about autism ever since. She is the co-founder of the Elijah Foundation which focuses on education of parents of children with autism with usable strategies to work with their children.
Debra is able to explain to all parents, parents of typical children and parents with children with autism, the clash between parents and school districts in achieving an equitable and just education for all children. We discuss real, understandable issues that have surfaced recently and thoughts for the future. Clearly Debra Harris is in the forefront of the discussion about the restructuring of our educational system.
The city council of Santa Monica withheld funds from their school district because the city council was uncomfortable with all the non-disclosure agreements that the school district was requiring to settle special education lawsuits. What are non-disclosure agreements (gag orders) and who do they help and who do they harm?
Three experienced special education advocates join me in conversation: Ellie Goldberg, advocate, author and legislative chair of the Massachusetts PTA; Pat Howey, advocate and nationally known special needs presenter at WrightsLaw seminars; and Katy Franklin, advocate and a leading voice towards revising the San Francisco Unified School District’s educational practices towards children with extra needs. They explore the Santa Monica case and discuss actions by other school districts that not only harm the children the school districts are entrusted to teach, but cause all taxpayers to pay more to compensate for their school districts improper education strategies. All this, in light of current special education enrollment at 10–12 % and rising rapidly, due to epidemics of allergies and autism.
As I listened to this show I developed a feeling of unease. I always thought that school district administrative personnel were working with the best interests of educating the child. I now question the validity of that feeling. I think all of us should explore if the administrators in our school districts have lost touch with that goal. This is a difficult issue to visit. We all want to trust. We all want to believe.
To gag or not gag, that is the question.
In 1992 during the early days of the autism epidemic, Sally Colletti tried to register her son with autism in kindergarten at her local elementary school in New York. The teachers in the district went on strike, taking a stance against being forced to teach “those” children. When her son was in the third grade Sally was informed of an action against her son that was so out of bounds that Sally was required to agree to a gag order in order to effect a settlement. It was at that moment that Sally decided that the next day was going to be her son’s first day with home schooling.This forceful advocate for special need’s children tells me about her journey and what she learned in her two year experiment with home schooling, and then what happened after the home schooling ended and her son returned to public school. A “drafted” journey, Sally Colletti—her experiment with home schooling.
When you feel a school systems is not meeting your child’s needs what do you do? Tammy Glaser came to that conclusion and choose to home school her child with autism and later, her typical child. Many of us may view home schooling as an option that is not on the table. Concern with the work load and fear that we won’t do it right puts people off. Tammy Glaser tells Senior Dad Stan Goldberg what it is like to home school, what supports are in place, and how home schooling will not work for everyone, all the while encouraging parents to learn from her journey. Tammy Glaser- Home school coach
“For some reason the issue of inclusion seems to invoke strong passions. Everyone views it differently. Add in the prescription for a least restrictive environment, and wow that gets everyone really churning. You can just see everyone in the room tighten their backs as they set their positions in stone. Walking blindly into this loaded mine field, Senior Dad Stan Goldberg meets educator Paula Kluth, a fifteen year veteran of special education. Paula has helped schools and school districts transition from exclusion to inclusion. She has held workshops to broaden the understanding of both parents and educators on the benefits of inclusion. The discussion moves through the hot topics and then on to some common ground when discussing the positive benefits of inclusion (it’s not just that it can be less expensive for a school district). Paula Kluth- Everyone is Included.
When a parent like Katy Franklin, who has a child with autism, donates time to aid other parents, it is a gift. Time is at a premium in her life. She is helping other parents navigate the special needs program of the San Francisco Unified School District. Katy is a member of the Community Advisory Committee on Special Needs of the San Francisco Unified School District School Board. The Committee sends out a newsletter twice a year from the committee to the parents of extra needs children in the district, that is distributed by the San Francisco Special Education Local Plan Area (SELPA). One issue was sent out, and then the difficulties began. When given the second newsletter in July 2007, the SELPA manager David Wax assured the Committee that it would be translated into two languages. This took until January 2008 but came back without any translation. A further delay was caused when the Committee was told there were “issues” with the ‘frequently asked questions’ section of the newsletter. Katy had included the questions the Committee members are continually asked by parents in an effort to increase the knowledge of the parents. It became an issue for SELPA because these questions and answers educated the parents on their rights in getting an equitable education for their child. At that point, SELPA and David Wax sent a letter from a law office telling the committee that they were not allowing pages two and three to be sent out (including the question/answer section). This is a case of a government agency censoring, without authority over the Committee, but it gets worse. Under the guise of investigating a complaint of Katy’s, SELPA sent a lawyer to Katy’s son’s school to investigate his homework and all communication between Katy and her child’s teacher. It gives you goose bumps. You can download the newsletter and the letter from the law office and see for yourself what SELPA doesn’t want parents to know. After you listen to the interview that Senior Dad Stan Goldberg has with Katy Franklin please listen to the closing segment as Katy perhaps provided us with the clue for us to tease out an answer as to why some autism numbers in the SFUSD appear so out of proportion.
Do school districts lie to parents of extra needs children? Joann Collins thinks so. An extra needs advocate for over 15 years and a mother of two grown children with extra needs she has written a book about it. "Disability Deception: Lies Disability Educators Tell and How Parents Can Beat Them at Their Own Game". JoAnn Talks to Senior Dad Stan Goldberg about the book and how parents can be effective when working with schools and school districts. They talk about the shocking Autism numbers in the San Francisco schools where 1 in 48 Caucasian children are diagnosed with autism. JoAnn’s view of the current extra needs landscape will open your eyes. Warning to parents of typical children: you will be shocked to hear what your school district (country-wide) is doing in this emerging civil rights issue.
Lenny Schafer is a Mench. (Mench is a Yiddish term which means “stand up guy”.) Lenny edits an autism newsletter that is read by over 20,000 people. But that is not why I call him a Mench. In 1989 Lenny’s world was falling apart. His thriving high tech business lay in ruins because of an earthquake, his marriage was falling apart, and then his son was diagnosed with autism. Professionals told Lenny there was no hope and the boy should be locked away in an institution and forgotten. Unlike 85% of the husbands whose child is diagnosed with autism, Lenny did not cut and run. He fought his wife for custody of their son and won. Lenny has devoted himself to his son ever since. Lenny believes that dirty vaccines caused his son’s autism. He has strong views on the ethics of some of our public intuitions and lawmakers, and fights to change the system through public advocacy and education in this country, which he dearly loves. I chat with Lenny about his journey, the autism issues of the day and his desire to make things better for all children who have autism, regardless of how they acquired it. Heart, soul, and compassion. A Mench.
If I had to select two people to represent extra needs children I could do no better then Pat Howey and Ellie Goldberg. Both are nationally known. Each has been an advocate for children with special needs for over 20 years. Pat speaks at Wrightslaw presentations, training parents to be effective advocates. Ellie has a dynamic consulting practice specializing in children with chronic health conditions and healthy schools and is a board member of the Massachusetts PTA and its Legislative chair. Today we first look at what has changed in the last 20 years and then we discuss what the situation is today and what parents face in schools. The last segment of the chat gets "very political" and we face head-on some of the public health issues, what all parents need to know, and what we can all do to effect change. Pat Howey and Ellie Goldberg leading the charge for equity and justice.
John Gilmore is one of the architects of Autism United, the collaboration of several New York-area autism organizations. They recently held a fundraising walk on Long Island to fund a joint project. John tells us how it all started and how the walk came together. Cathy Moriarty is their national spokesperson and John tells us about Katie Wright’s help during the walk. Stan shares his impressions of the “Jenny on Larry King” and explains his “losing the dream syndrome”. Stan and John discuss autism organization collaborations and mergers of the future.
There is a nationwide shortage of FloorTime practitioners. Some ABA practitioners are now offering FloorTime as well. As every child with autism is different, so to is the treatment of each child. Now these practitioners have two strategies to choose from to treat a child. Katie Wright told me she uses FloorTime with her son. What is FloorTime? With the discussion of autism on such mainstream media as Larry King and Oprah it is time to explain all treatments. Two parents who use FloorTime discuss it. Katy Franklin of San Francisco and Mike Fields of Atlanta. They explain what FloorTime is and then discuss the situation with finding practitioners in different parts on the country and the combining of ABA and FloorTime at the practitioner level.