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Robert MacNeil Returns to NewsHour for ‘Autism Today’ Series

5 Apr

Robert MacNeil of the PBS NewsHour has produced a series on autism for autism awareness month. He’s given an interview about the project on the NewsHour website.

For the first time in more than 15 years, Robert MacNeil is returning to the program he co-founded, with a major series of reports on “Autism Today.” The subject that drew him back is one that resonates deeply with his own family and many others. Robin’s six-year-old grandson, Nick, has autism.

Here is the video from that interview:

http://www-tc.pbs.org/video/media/swf/PBSPlayer.swf

Watch the full episode. See more PBS NewsHour.

A rundown of the episodes was given in the first announcement of the series. The series looks to cover a very wide range of topics. Mr. MacNeil notes that he has a producer with experience in covering autism: Caren Zucker. She wrote the piece for The Atlantic on Donald T, the first of Dr. Kanner’s patients reported in his original paper on Autism. Amongst her other projects is Christmas with My Autistic Son in the Daily Beast. There’s some very good work there.

As noted above, Mr. MacNeil also has worked from a personal connection: his grandson. According to an email I received, over the weekend Mr. MacNeil’s daughter came forward about the project in a post on the Yahoo group, EOHarm:

Hi, my name is [A] MacNeil and I have been a listmate here for a long while. This series was born out of 3 yrs of conversations with my dad after my son Nick regressed into Autism following his MMR, Dtap and Hib at a 15 month well-baby visit. It was a long journey getting this program off the ground and some really terrific experts in our community helped to convince my dad that this was really imperative. The program is no where near as hard driving and aggressive as I had intended but, in it’s own quieter way, some key points are made. In the first segment I discuss Nick’s regression post vaccination, we make the point very clearly that he is physically sick and that we have been terribly let down by the mainstream medical establishment, and that when we get to decent medical help Nick starts to get better. I would have loved to have highlighted the work we do with our DAN, whom I adore, but that MD asked not to be named. They would rather focus on treating children and do not want a lot of media attention. I haven’t watched the other segments yet, so I can’t comment on their content. I hope you’ll watch. It was very sentimental to see my dad on camera with my kids at this later stage in his career.

Thanks so much,.

Based on that post, it appears as though Ms. MacNeil is the owner of the My Vaccine Injured Child blog, which was started after she attended the Green our Vaccines rally.

I still look forward to this series. Perhaps not with the same enthusiasm I had a few days ago, but I look forward nonetheless.

Kim Stagliano’s daughter getting very rough justice

4 Apr

Please visit Age of Autism, read the story and sign the petition.

Loving Lampposts, a review

4 Apr

Loving Lampposts is a new film about autism by filmmaker and autism parent Todd Drezner. You get a good idea of the direction of the movie from the subtitle–Loving Lampposts, living autistic. I “watched” the film. As in, it’s hard to find an hour and a half solid to watch something through. Instead I watched a little on TV and listened and watched what I could on my computer as I worked. I really wish I had blocked out the full hour and a half to watch it in one sitting as it is quite well done. I agree with Shannon Rosa in her review: this is a film I’ve waited for to fill many roles. It is a film that I wish I had available when we got the diagnosis for our kid. It is a film I’d like to recommend to people who ask about autism.

Todd Drezner narrates the film. He does a good job of using narration lightly. He mostly narrates to make the transitions between the segments of the film. In general, he lets the people–the autistics, the parents, the professionals–in the film present the various ideas.

The first part of the film introduces the ideas of autism as a medical condition and neurodiversity. The vaccine discussion does come up later in the film. It is great to see the vaccine discussion not as parents vs. a mainstream medical establishment. It will come as no surprise to readers here that many parents do not subscribe to the vaccine-injury model, and Mr. Drezner presents them in their own voices. Some of those parents featured in the film include Kristina Chew and Roy Richard Grinker.

The discussion of cure and vaccines needs to be addressed. But what makes the film really work is the time spent on autistics. Autistic kids and a good amount of time with autistic adults. Stephen Shore talks about his life and his work in education. Also featured autistics include Barbara Moran, Kassiane Sibley and Sharisa Kochmeister.

There are great segments with Lyndon and his mother Lila Howard. Lyndon was born in the early 1950’s, during the “childhood schizophrenia” and “refrigerator mother” era. He’s now living in his own apartment, with his mother still as his primary caregiver.

Dora Raymaker is also featured, communicating with AAC through her computer.

Director Todd Drezner is not heavy handed, but he dispels myths. Here are two of them: Neurodiversity is not all about “high functioning” autistic adults. Neurodiveristy advocates do not deny that autism is a disability.

I’ve never wanted to attend an autism-parent/biomed convention. But Loving Lampposts really makes me want to put into action my desire to attend Autcom or Auttreat. Loving Lampposts was partially filmed at Autcom 2007.

As I wrote above, I wish I had this film years ago. I wish I could have seen it. I wish I could have offered it to the many people who have asked questions about autism. I’ll certainly be telling my family and friends about this and offering it to people asking about autism.

Disclosure: I asked for and was provided with a copy of the DVD to screen. I am very grateful that this was made available to me, but I am not compensated in any way for purchases of the film. With that said: You can purchase the film from Amazon.com, or from the Loving Lampposts website. It isn’t available yet on Netflix, but you can put it in your queue and give them the idea that they should make it available.

On Autism Awareness Day

1 Apr

Today is World Autism Awareness Day. To mark it I wanted to write about a subject regarding autism that is close to my heart.

Intellectual Disability (other wise known as Learning Disability, particularly in the UK). MENCAP say:

There are many different types and most develop before a baby is born, during birth or because of a serious illness in early childhood. A learning disability is lifelong and usually has a significant impact on a person’s life.

Learning disability is not mental illness or dyslexia.

People with a learning disability find it harder than others to learn, understand and communicate. People with profound and multiple learning disabilities (PMLD) need full-time help with every aspect of their lives – including eating, drinking, washing, dressing and toileting.

There are 1.5 million people with a learning disability in the UK. Like all of us, they are individuals who want different things in life and need different levels of support.

New science released states that just over 10% of people with an intellectual disability also have autism. That pertains to 150,000 UK citizens. One of those UK citizens is my autistic child.

On Autism Awareness day please be aware that people with autism often – very often – have other challenges, including Learning Disabilities, that significantly affect their daily lives. I’m aware that governments in the UK, in the USA and in Canada are implementing deep cuts to disability related spending. This does not exclude the most vulnerable members of our society, those with Learning Disabilities. Maybe, as we form an alliance to deal with the situation in Libya, and we come together to help the people of Japan (both things I wholeheartedly agree we should do) we might come together as an international body to make a pledge that on World Autism Awareness Day we will strive to not leave these world citizens behind and we will not take away their very means by which they can help themselves and be helped by others.

Release of the IACC Summary of Advances in ASD Research and Updates on Autism Awareness Month Activities

1 Apr

Below is a copy of the email the IACC sent out today with research advances and updates on Autism Awareness Month activities.

The Interagency Autism Coordinating Committee and Office of Autism Research Coordination are pleased to announce that the 2010 IACC Summary of Advances in Autism Spectrum Disorder Research was released and posted to the IACC website today in conjunction with Department of Health and Human Services celebration of “National Autism Awareness Month” and the United Nations designated “World Autism Awareness Day” on April 2, 2011. The 2010 IACC Summary of Advances is a collection of brief summaries covering the twenty research findings and associated publications that the IACC felt made the most significant contributions to autism biomedical and services research in 2010.

Please feel free to visit the pages below for more information on the IACC Summary of Advances and National Autism Awareness Month activities.

IACC and Department of Health and Human Services information:

-IACC Home Page: http://iacc.hhs.gov/

-IACC News Update on Release of the 2010 Summary of Advances

The 2010 IACC Summary of Advances in ASD Research

-Blog: IACC Chairman, Dr. Thomas Insel, highlights recent progress in honor of National Autism Awareness Month

-Department of Health and Human Services Secretary Kathleen Sebelius’ Statement on National Autism Awareness Month

-Department of Health and Services homepage spotlights Autism Awareness Month: http://www.hhs.gov/

Release of the Department of Health and Human Services’ Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006-FY 2009)

-Centers for Disease Control and Prevention (CDC) Announcement for Autism Awareness Month

Upcoming IACC Full Committee Meeting April 11, 2011, featuring special presentations in recognition of National Autism Awareness Month

Additional Autism Awareness information:

United Nations’ Secretary-General Ban Ki-moon’s Statement Regarding World Autism Awareness Day

We wish everyone the best as we reflect this month on the significance of our work together to improve the lives of people with autism and their families.

Sincerely,

The Office of Autism Research Coordination

Loving Lampposts video clips

1 Apr

Loving Lampposts is a new documentary film by filmaker and autism parent Todd Drezner. Here’s a blurb from their website to give you an idea about the film:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

I put it on my Netflix list (you can too: link) right after reading the review on The Thinking Person’s Guide to Autism and the interview with the director on Neurotribes. Netflix doesn’t carry it yet, but with luck I may have a copy soon. One can purchase a copy as well.

If you are interested in what Todd Drezner has to say, he has the first in a series of articles up on the Huffington Post: Learning to Embrace Autism.

For more on what the film is about, here are a series of video clips the produces have made available:

Opening sequence with director Todd Drezner introducing autism spectrum disorder through his son, Sam

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Understanding autism through “Rain Man” and as described by author of “Unstrange Minds” Roy Richard Grinker

Loving Lampposts Clip #2 from Cinema Libre Studio on Vimeo.

Sharisa Kochmeister, autistic adult with a genius level IQ, and her father, Jay – “I don’t have a disease. I have a disability that causes unease…”

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

Mothers Kristina Chew and Nadine Antonelli initially hoping to find a “fix” for their autistic children

Loving Lampposts Clip #4 from Cinema Libre Studio on Vimeo.

Simon Baron-Cohen, Director of the Autism Research Centre, explains definitions of autism and Asperger’s

Loving Lampposts Clip #5 from Cinema Libre Studio on Vimeo.

About the anti-childhood vaccination movement featuring actress and mother, Jenny McCarthy

Loving Lampposts Clip #6 from Cinema Libre Studio on Vimeo.

Blogger, mother, and activist Kristina Chew shares the joy of watching her son ride a bike

Loving Lampposts Clip #7 from Cinema Libre Studio on Vimeo.

Autistic adult, Dora Raymaker, using a computer to talk, explains how autism affects her ability to communicate

Loving Lampposts Clip #8 from Cinema Libre Studio on Vimeo.

Dr. Paul Offit discusses his involvement in the vaccine industry and the MMR vaccination

Loving Lampposts Clip #9 from Cinema Libre Studio on Vimeo.

Autism supplement in yesterdays Independent

31 Mar

An interesting supplement with contributions from Jane Asher amongst others. Download as a PDF right here.

Sexual abuse allegations by children with neuropsychiatric disorders

31 Mar

The sad fact is that children are often targeted by predators. Disabled children as well. What happens when a child with a developmental disability brings that accusation forward? Are the courts prepared? I hadn’t really thought about it until I read an abstract for a paper just released from a group in Sweden: Sexual abuse allegations by children with neuropsychiatric disorders. I haven’t read the full paper yet, and the abstract isn’t clear to me. One part of the abstract that I found troubling was the lack of psychiatric expertise available in many court cases, which raises the question of how ready are the courts to ascertain the reliability of witnesses with developmental disabilities such as autism, intellectual disability and similar conditions.

I’d be very interested if anyone could point me to sources of good information on these questions, especially within the US.

Loving Lampposts: synopsis and director’s statement

31 Mar

Loving Lampposts, the new documentary by filmaker Todd Drezner, takes a look at autism and parts of the autism communities in America today. After my initial piece on the documentary, I read the press kit again and thought that the synopsis and director’s statements really should be up here on LeftBrainRightBrain.

Synopsis:

As autism has exploded into the public consciousness over the last 20 years, two opposing questions have been asked about the condition: is it a devastating sickness to be cured? Or is it a variation of the human brain — just a different way to be human?

After his son’s diagnosis, filmmaker Todd Drezner visits the front lines of the autism wars. We meet the “recovery movement,” which views autism as a tragic epidemic brought on by environmental toxins. Operating outside the boundaries of mainstream medicine, these parents, doctors, and therapists search for unconventional treatments that can “reverse” autism and restore their children to normal lives.

We meet the ‘neurodiversity’ movement, which argues that autism should be accepted and autistic people supported. This group argues that the focus on treatments and cures causes the wider society to view autistic people as damaged and sick. Acceptance is the better way, but how do you practice acceptance of autism in a world where the very word can terrify parents? And we meet a too often ignored group: autistic adults. It’s these adults who show just how tricky it is to judge an autistic person’s life. Is an autistic woman who directs academic research about autism recovered? What if the same woman has trouble speaking and uses text-to-speech software to communicate? Is an autistic man who lives in his own apartment recovered? What if his mother must hire people to do his laundry and take him out in the evenings?

This wide angle view of autism makes clear what’s at stake in the autism wars. Will we live in a world dominated by autism conferences where vendors hawk vitamins and hyperbaric chambers to parents desperate for a cure? Or will we provide the support that autistic adults need to lead the best lives they can? And can these two worlds possibly co-exist?

Director’s Statement:

One afternoon in August of 2007, I was pondering possible documentary subjects as I brought my son Sam home. We had just finished walking the circuit of lampposts that Sam liked to visit in Prospect Park.

At the time, Sam’s diagnosis of autism was a few months old, and he was about to start at a special needs school in Brooklyn. His diagnosis still felt strange to my wife and me, especially because we didn’t seem to be reacting like many autism families that are depicted in the media. We didn’t feel like Sam had been “stolen” from us. He wasn’t sick. He hadn’t lost any skills. We didn’t think his life was doomed to be a tragedy. Certainly, we were concerned about how best to support Sam, but he was very much as he had always been. It was just that his differences from typical children now had a name attached to them.

My wife had been exploring the autism community on the Internet and had come across a group of autistic adults and parents of autistic children who supported “neurodiversity”–the idea that autism is both a disability and a difference, a natural variation of the human brain. This idea felt right to us, and yet I wondered: Sam did not have many of the most difficult behaviors associated with autism. Would we still believe in neurodiversity if Sam was banging his head on the wall or rocking endlessly in a corner? Was a parent’s view of autism simply a function of how difficult his child was? On that August afternoon, I realized that such questions would be a perfect subject for a documentary, and Loving Lampposts was born.

In the more than two years since, I’ve immersed myself in the world of autism at the same time that the world at large has paid more attention to autism than ever before. Never has a community been less ready for its cultural moment than the autism community. Indeed, there is disagreement about whether autism is a disease, about how to treat it, about whether it is an epidemic, about whether it can be cured, and even about what it is.

These disagreements are on full display in Loving Lampposts. And yet, at the end of the process, I can’t help but be optimistic. I’ve met parents of severely autistic children whose patience, acceptance, and support of their kids are truly inspiring. I’ve met autistic adults–whose voices are too often ignored in the autism debate–who lead rich, full lives even as they struggle with the challenges of their disability. And I’ve seen Sam progress in ways I couldn’t have imagined two years ago.

He’s still profoundly different from other children. But in making the film, I’ve seen that there may be a place in the world for Sam and those like him. I hope that audiences that view Loving Lampposts will see that, too.

Loving Lampposts can be purchased here.

Loving lampposts

30 Mar

Loving Lampposts is a film by an autism parent. I’m waiting for my copy (disclosure: I have asked for a review copy from the producer). In the meantime, reviews have come out by better prepared writers than I. Steve Silberman at Neurotribes has an interview with the filmaker: “Loving Lampposts,” A Groundbreaking Documentary About Autism, Love, and Acceptance. Shannon Des Roches Rosa at The Thinking Person’s Guide to Autism has Loving Lampposts: Accepting and Understanding Neurodiversity. Liz Ditz at I speak of Dreams has A Must-See Movie: Loving Lampposts.

I remember first hearing about this project some time ago when there was just a very sparse website. I had no concept of where the project was going. I was left with a couple of questions then, including: is this going to be a fairly shallow movie about a single quirk in a single autistic? (The idea for the title comes from the fact that the filmaker’s son, well, had a love of lampposts. )

From the reviews (above) and from the materials already available, this looks to be a good movie. A movie which presents some very important questions and gives thoughtful discussion to them. From the Loving Lampposts website:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

Here is a video clip made available:

Loving Lampposts Trailer from Loving Lampposts on Vimeo.

In this short clip we see the wonderful boy, Sam, Prof. Richard Grinker (anthropologist, author of the book Unstrange Minds, and autism researcher), I believe that’s Kristina Chew’s voiceover in a clip of her son Charlie riding his bike, Jenny McCarthy, and parents at a National Autism Association meeting.

Press materials for the book do what they should: they make me want to see the movie. Yes there are the excellent photos of Sam and Lampposts:

But there are also photos of Stephen Shore working with a student:

And a photo of Dora Raymaker:

To point out only a few of the photos.

From the Press Kit, here is the list of participants in the film. It’s a very big and rather diverse group of people.

Featured

Nadine Antonelli and Noah: A resident of Wilmington, N.C. and a medical doctor, Nadine initially believed that she should try to cure her son Noah’s autism. Over time, though, she came to accept his diagnosis and she now works to provide support to other families with autistic children in Wilmington.

Simon Baron-Cohen: The Director of the Autism Research Centre at Cambridge University and a world-renowned expert on autism.

Kristina Chew, Jim and Charlie Fisher: Professors at St. Peter’s College and Fordham University respectively, Kristina and Jim are raising their autistic son Charlie in Cranford, NJ. Kristina is a popular blogger writing about her experiences with Charlie and advocating for neurodiversity.

Paul and Jackie Colliton and Billy: Residents of New York City, Paul and Jackie adopted their autistic son Billy when he was ten days old. He did not begin to speak until age seven.

Todd and Erika Drezner and Sam: The filmmaker, his wife, and their autistic son.

Roy Richard Grinker: A Professor of Anthropology at George Washington University, Richard is the father of an autistic daughter and the author of Unstrange Minds, a history of autism and an examination of how it is treated around the world.

Lila Howard and Lyndon: The 87 year-old mother of a 60 year-old autistic son, Lila raised Lyndon as a single mother at a time when there was no support for parents of autistic children. Ignoring experts who blamed her son’s condition on her and suggested he be institutionalized, Lila helped Lyndon learn to live independently. Today, he lives in his own apartment in New York City, where he has lived for 13 years. Lila remains his primary caretaker.

Jay Kochmeister: The father of Sharisa (see below).

Sharisa Kochmeister: An autistic adult who does not speak, Sharisa was believed to have an IQ of 30 from the time she was two until she turned 13. Almost by accident, her family discovered she could read, and she now communicates with a computer with text to speech capability. Her IQ is at a genius level, and she is a graduate of Denver University who advocates for autistic people.

Eileen Muniz, Gianna, Marz, and Vincent: The mother of three autistic children in Mohegan Lake, NY, Eileen and her husband recently separated.

Paul Offit: A doctor who is the Chief of Infectious Diseases at Children’s Hospital of Philadelphia. He argues strongly against the idea that vaccines cause autism, and is the author of Autism’s False Prophets, which exposes scientifically unsupported treatments for autism.

Dora Raymaker: An autistic adult who communicates using a computer with text to speech capability, Dora is working on her graduate degree in Portland, Oregon. She is the co-director of the Academic Autistic Spectrum Partnership in Research and Education.

Johnny and Chris Seitz: An autistic adult and performance artist, Johnny worked with his wife Chris to develop “God Does Not Make Garbage,” a 30 minute show that goes inside the world of autism.

Stephen Shore: Diagnosed with autism in 1964, Stephen was said to be profoundly ill and was recommended for institutionalization. Today, he is a Professor at Adelphi University. He also teaches music to autistic children and lectures about autism all over the world.

Cindy Walsh, Eric, and Robbie: The mother of twin boys with autism in Chantilly, CA, Cindy believes she has “recovered” her children with alternative treatments.

ALSO APPEARING

Elizabeth Avery: An autistic adult living in the Boston area.

Kenneth Bock: A doctor who treats patients with autism using alternative therapies.

Nancy Cale: The co-founder of the organization Unlocking Autism.

Paul Collins: The father of an autistic son and the author of Not Even Wrong, a history of autism.

Doreen Granpeesheh: The Executive Director of the Center for Autism and Related Disorders.

Kristin Holsworth: The mother of an autistic son, Troy.

Peter Hotez: A doctor who is President of the Sabin Vaccine Institute, Peter is the father of an autistic doctor. He says that there is no scientific evidence that vaccines cause autism.

Karen Hubert: A sales representative for New Beginnings Nutritionals, Karen markets vitamins and supplements to parents of autistic children.Dan Joyce: A representative of the organization Autism Speaks.

David Kirby: The author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic.

Estée Klar: The mother of autistic son Adam, founder of the Autism Acceptance Project, and writer of a blog called “The Joy of Autism.”

Robert Krakow: The father of an autistic son a plaintiffs lawyer in vaccine injury cases.

Jenny McCarthy: The celebrity actress is the mother of an autistic son and a leading proponent of the idea that vaccines cause autism.

Arnold Miller: The Director of the Language and Cognitive Development Center of Boston.

Barbara Moran: An autistic adult with a special interest in steam locomotives and old GE refrigerators.

Bob Morgan: The owner of Heavenly Heat Saunas, Bob believes that saunas can “detoxify” autistic children.

James Neubrander: A doctor who treats patients with autism using alternative therapies.

Christina Nicolaidis: The mother of an autistic son and the co-director of the Academic Autistic Spectrum Partnership in Research and Education.

Laura Rose: The mother of a “recovered” autistic son, Jason.

Ralph James Savarese: Ralph and his wife adopted a six year-old profoundly autistic boy who had been severely abused. Today, although Ralph’s son cannot speak, he is a straight A student in an Iowa high school.

Bill Schindler: The director of the Mild Hyperbaric Therapy Center, Bill works with parents who treat their children’s autism by giving them treatments in hyperbaric chambers.

Phil Schwarz: The father of an autistic son and an advocate of neurodiversity.

Kassiane Sibley: An autistic adult and advocate for neurodiversity.

Autumn Terrill: An expert in special education who works with Billy Colliton.

Anju Usman: A doctor who treats patients with autism using alternative therapies.

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