By John Elder Robison

Yesterday a new hashtag campaign appeared in my Twitter feed – #MSSNG. It seemed to refer to autism, and a new research project. I had an immediate reaction, based on my interpretation of the letters in the context of the autism discussion – I thought, Missing?  Certainly not.  We may be gifted or we may be disabled but we are certainly here.  And we are complete humans.   I posted that right away, and it launched a flurry of discussion.

I wondered what the campaign was about, so I went looking. It’s an initiative by Autism Speaks to sequence the genomes of 10,000 individuals touched by autism.  In my opinion, that is a worthwhile thing to do.  I’ve written before about the value of genetic research.  But it is far from my #1 priority for the autism community. More on the why of that later.

Their choice of a name turned mssng from an announcement of a science initiative to a public relations debacle.  I think it’s seriously misguided on several fronts.

First – the community side

Autistic people are not missing.  We have always been here, and we always will. Yet I and many other autistics live with the knowledge that we occupy a world where autism is widely perceived as a disease or defect. I can’t speak for other autistics, but I don’t much care to be seen as diseased or defective. Nor do I like being seen as “missing pieces,” which the name mssng implied.

To say that is not to deny the very real ways autism disables us.  Rather, it’s a simple statement of fact.  Autism is a neurological difference, not a sickness.  As such, it’s here for a reason. Who are we, to second-guess that?  Remediate its disability – sure!  Wipe it from the world – that’s crazy talk, and societal suicide!

I’ll bet every autistic kid in America knows how it feels to be told we were missing some of our marbles growing up, and reminding us of that in the context of a research initiative is at best insensitive and at worst seriously offensive.

It’s not a name I’d have chosen.  I don’t know who did choose it but I’d bet they were not autistic.

An organization run by autistic people would not have made this mistake.  An organization run by non-autistics, autism parents, and autism grandparents DID make this mistake. Or perhaps to them, it’s not a mistake.  It’s just “Some autism parents speaking.”  But that is not what their organization’s name implies.

If “Autism truly Speaks” it by definition does so through autistics. That’s the only way it could speak.

“Autism Observed” is what parents and non-autistics do, and the observers get it wrong a troubling percentage of the time, in the opinion of many who live autism in the first person.

Those are very different things, and we should get our terminology right.

Second – the science side. 

The idea of researching autism at its most basic makes sense.  But genetic research is fraught with ethical challenges.  However, that is not its biggest problem here and now

The biggest problem here and now is very simple:  Genetic research is an extremely long-term game. The timeline to start a study like this, make a discovery, translate that to a possible treatment, and then get that treatment tested and FDA approved is 10 years at a minimum, and more likely 20 years.

So this effort won’t help any of the autistic children today.  Benefits may flow from the research one day, but the beneficiaries will be tomorrow’s children. Today’s children will be long grown up, for better of for worse.

What we need right now are therapies to help us be the best we can be, as we actually are.  We need tools to help us overcome physical limitations.  We need solutions for the medical problems that plague many people on the autism spectrum.  Those are things autistic people – child and adult alike – want and need right now.  The range of therapies, tools, treatments, and services needed is long and varied – and largely attainable, given the budget and the focus.

We also want societal change and acceptance.  We want sensory friendly workplaces.  We want jobs shaped to our different abilities.  We want help navigating the education and employment mazes.  We want to be productive members of society.  Those too are things we want and need right now.  They too are attainable given the resolve, budget, and legislation to back it up.

If I were running an autistic-centered autism advocacy organization, I’d be making those things my #1 and #2 priorities.  I wouldn’t be talking genetics until I’d made some really solid progress on my main objectives.  Once I showed the community what I was doing for them today, I’d talk a little about the long term game.

And most of all, I’d be looking around me, at autistic people leading the organization.

I’m a big believer in science, and I absolutely understand that genetics may one day solve the riddle of why some people have spontaneous genetic mutations that lead to severe intellectual disability.  It’s led to some important discoveries and it will surely be key to more. But how many individuals who live with intellectual disability today will be helped by that?  How many autistic job seekers will get a job, thanks to that work?  How many autistic kids who wander dangerously will suddenly become safe?  How many autistics that suffer from anxiety or gastric distress will suddenly relax in comfort? Those are a few of the very real issues autistic people are actually thinking about now, and genetics isn’t one of the answers on tomorrow’s table.

Genetics is important.  But it is not job #1 for this community. Once again, with this effort, we are spending money in the wrong places.  We should not be trying to “solve the autism riddle.”  We should not be “looking for missing pieces of the autism puzzle.”  We should be Helping Autistic People – Right Now.

That is my opinion, and my hope and wish for this holiday season.

Discuss this issue on the forums!

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.

The post What’s MSSNG in #Autism? – By John Elder Robison appeared first on Wrong Planet.

She was awaiting the results of a frivolous lawsuit brought against her by psychoanalysts upset by her exposé. Autistic self-advocate David Heurtevent rushed into the room. The verdict was in. Sophie’s film was banned in France by a court decision that also forced her to immediately pay 60,000 US dollars to the three psychoanalysts behind the lawsuit.

Four days ago, we published an article covering Sophie’s film and the egregious autism situation in France. The story became viral and has already been read by more than 10,000 people, most of whom were shocked by the barbaric stories of torture, abuse, and neglect perpetrated by psychoanalysts on autistic individuals in France.

Read on

Sophie started her production company in France a little more than one year ago. This film is her directorial debut. She had wanted to be a psychoanalyst when she was a young girl so giving psychoanalysts a platform to tell their story was an exciting topic for her first documentary film. She did not set out to create a film this controversial but the stories she heard speak for themselves.

Sophie is premiering the movie tonight at the ABAI conference in Philadelphia, PA. This is her first visit to the United States so the Association for Behavior Analysis International has been gracious enough to host the film screening.

An anonymous source has given Wrong Planet a complete copy of the banned film. We will be posting it very soon so keep checking Wrong Planet this evening.

Update: Watch the Movie!

The post Autism in France Pt. 2: Psychoanalysis Film Banned in France appeared first on Wrong Planet.

Unlike most modern countries, the Autism Spectrum in France is viewed as a disease that can and should be cured. The dark-ages culture of neglect and abuse remains extremely strong. The documentary The Wall or Psychoanalysis Put to the Test for Autism reveals how outdated theories haunt Autism there.

David Heurtevent is a 32 year-old autistic self-advocate from France. He has travelled extensively and even got a degree from Georgetown. We invited him to share his views on the issue of autism in France and to explain how you too can help.

David Writes:

Why is Freedom of Speech under attack in Autism in France?

Back in September 2011, Sophie Robert, a French filmmaker released her first documentary “The Wall or psychoanalysis put to the test for autism” in France. She had worked four years on it and met more than 30 psychoanalysts, who are either psychologists or psychiatrists following the psycho-sexual theories of Sigmund Freud, Jacques Lacan and Bruno Bettelheim. You can watch the French film subtitled in English on supportthewall.org for free.

The blog ads2mom wrote: “[the documentary] details the continued accepted abuse and dehumanization of persons with autism. It further shows that the French psychiatric community still maintains the disavowed theory of maternal cause for autism rather than the acknowledged neurological causes, as well as their insistence that autistics be shut away as useless, ineffectual and unnecessary”.

End of October 2011, three of the psychoanalysts interviewed in the movie sued Sophie Robert and asked the footage to be seized. The French justice accepted and seized it. The justice also denied her right to the secrecy of sources. In November, the same psychoanalysts sued her and the French autism non-profit organizations “Autistes Sans Frontières” for roughly half a million dollar and ask for the movie to be banned. A court hearing was held on December 8^th and the Parents with autistic children started a grassroots campaign to support Sophie in France.  

The campaign has been quite successful with lot of media attention. Parents even rallied on the day of the court hearing in Paris and Lille.

Yet, the movie and the ideas of autism being a neurological condition are under constant attack of the psychoanalysts in the media. Some media and the plaintiffs even described it recently as “intellectual fraud”.

We don’t know yet how the events will unfold as the judge is expected to release her decision on Jan. 26^th2012. So stay tuned.

Why is Autism in dire situation in France? Is there real abuse?

The documentary is the tip of the iceberg. The issue is much deeper. The problem of autism in France is dramatic compared to most developed countries.

For instance, autism is viewed very often there as a “psychosis”, a mental health issue. Some even regard it as “child schizophrenia”. As a result, most kids with autism are institutionalized in psychiatric units from a very young age until old age. In many ways, Autism in France still looks at times like the old movies “Rain Man” or even “One Flew Over the Cuckoo’s Nest”.

Theories are not just backwards. They can be really harmful. Followers of the psychoanalytic theories of the early 20^th century continue to blame mothers for the autism of their child. As a result, social services sometime withdraw the children from their parents based on this crazy theory.

80% of the children with ASD don’t go to school and many kids receive their diagnosis after age six.

Worse, France still allow very harsh techniques, such as “packing”, a “barbaric” practice which consists of wrapping children with ASD, naked, or in undies, in cold wet sheets (at 50°F, 10°C), like mummies. I invite you to read more about packing on our website.

Some parents decide to protect their children and bring their children in exile to Belgium so they can receive better care and have access to schools.

What can we do about it?

It is time to say “enough” to France, which has been already condemned by the Council of Europe in 2004. Even though 2012 has been declared the year of National Attention for Autism by the French Government, no real decision has been made to stop abuse.

On January 24^th evening, we plan on releasing a funny video to celebrate the selection of the French movie “The Artist” for the Oscars.

On January 26^th, Sophie Robert and I will give a press conference in English in New York City. Sophie Robert will discuss the court decision. I will launch an international campaign to stop abuse of autistics in France and we hope many of you will sign our petition.

You will be able to watch the conference live for free on USTREAM: http://www.ustream.tv/channel/support-the-wall-press-conference

Alex Plank and many others (Temple Grandin, Donna Williams, Diane Fraser, Travis Thompson, Tony Attwood, etc) are following and supporting our campaign.

We need your help to make it really successful and to change the lives of children and adults on the spectrum in France and elsewhere.

Don’t forget to check regularly our website: http://www.supportthewall.org”

And Keep Checking Wrong Planet for more information!

The post Autism in France: Psychoanalysis, Packing, and Other Travesties: Why it Matters appeared first on Wrong Planet.

In this 18 minute episode of Autism Talk TV I sit down with Lindsay Oberman at Harvard Medical School’s Beth Israel Deaconess Medical Center to talk about TMS, a technology that allows researchers to use magnets to affect the brains of individuals with Autism. First we have an interview with Lindsay and then you can watch me undergoing TMS.

Lindsay discusses the details of TMS and how it relates to Autism. She has been interested in Autism since she was a graduate student and clearly has a passion for finding out how autistic brains differ from neurotypical ones.

Watch Episode 10 of Autism Talk TV
I was surprised that the TMS researchers were able to use a magnet to move my hand and individual fingers. The region they affected on me was the motor cortex which governs movement. The idea that you can use a magnet to make changes to the brain sounds like science fiction, but it isn’t fiction at all.

Lindsay is close to conclusively figuring out exactly how autistic brains differ from neurotypical brains. There is great potential for TMS being used as a diagnostic tool as well as a theraputic tool.

The post Autism Talk TV – Ep. 10 – Transcranial Magnetic Stimulation appeared first on Wrong Planet.

Hello and welcome to episode five of Autism Talk TV. This time around, Alex Plank and Jack Robison talk with Geraldine Dawson, the chief science officer at Autism Speaks. Dawson, who’s been involved in the autistic community for over 30 years, gives Autism Talk TV a sample of the research funded by Autism Speaks aimed at, not curing, but improving the lives of spectrumites.

We learn about some of the physical troubles autistic individuals sometimes face, such as sleep difficulties and GI problems, and how simply educating doctors could do a world of good. We also hear about the unfair segregation of autistic children in school communities, and how special education for aspies and auties could be made obsolete by simply raising awareness and educating teachers and school officials.

Read on for episode 5 of Autism Talk TV!
Thanks Geraldine for helping us. Geraldine Dawson is a wonderfully kind person, and is an essential piece of exactly the kind of organization Autism Speaks should be: equal parts caring and education.

See you next time on episode six of Autism Talk TV, featuring Steve Silberman of Wired Magazine, and the tale of his journey into neurodiversity and the cultural evolution of autism.

The post Autism Talk TV – Ep. 5 – Geraldine Dawson of Autism Speaks appeared first on Wrong Planet.

For the third episode of Autism Talk TV, I had the opportunity to sit down with Allson Singer who cofounded the Autism Science Foundation. This is the first video in our series of Autism Talk TV interviews conducted at IMFAR in Philadelphia last week.

Alison talks about what it was like for her brother growing up in the 1960s and 1970s with an Autism diagnosis. She discusses the history of Autism services and shares her views on the future of Autism research. In addition, Alison explains the roles genetics plays in finding future treatments for individuals on the Spectrum.

Read on to watch the interview of Alison Singer!

The post Autism Talk TV Ep. 3: Alison Singer at IMFAR appeared first on Wrong Planet.

Autism’s False Prophets: Bad Medicine, Risky Medicine, and the Search for a Cure is a well-referenced, historical work that explains the dangerous and unnecessary controversies that have put the lives of autistic children at risk. Offit sets up his book by explaining how he has become a major player in the field of immunology. He then explores the process by which the autism/vaccine controversy has been given so much attention. He describes how parents and physicians worked together to create treatments that when put under scientific scrutiny, have no real efficacy.

Offit sets the tone of the book by showing how secretin therapy and facilitated communication were exposed as scams. He then debunks Dr. Wakefield’s study of the MMR vaccine and employs the scientific method to show how thimerosal and other mercury-based theories have no relevance.

Read on for more about the book and a video with author Dr. Paul Offit!
At the end of the book, Offit includes an epilogue focusing on Jenny McCarthy’s impact on the community through her books and television appearances. He is clear to point out that her “Mommy Instinct” does not make her an immunologist, psychologist, pediatrician or scientist. For those who believe that following the scientific method is the only way to come to an understanding about autism than Offit presents an important work that should be praised for exposing those who mislead the public and the opportunism of the lawyers, journalists, celebrities, and politicians who support them. Offit scientifically dismisses the sub-group of parents, journalists, researchers and activists that believe they know what is causing autism and how to cure it.

Paul A. Offit, M.D. is the chief of Infectious Diseases and the director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. Dr. Offit has received the Jonas Salk Award from the Association for Professionals in Infection Control and Epidemiology, the Gold Medal from the Children’s Hospital of Philadelphia, and the Stanley A. Plotkin Award in Vaccinology from the Pediatric Infectious Diseases Society. He will donate all royalties from sales of this book to autism research.

Purchase Autism’s False Prophets at Amazon.com

Review by Dana Commandatore, mother to a wonderful autistic boy.

Video:

The post Review and Video: Autism’s False Prophets by Dr. Paul Offit appeared first on Wrong Planet.

Read on for the interview.
Listen to the audio recording below!

(player not working? download the mp3)

Alex Plank: Hey, How are you doing?