Archive | April, 2011

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.

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