We discuss the inspirational parts of their book as well as the troubling periods of autism history and the shocking discoveries they made about Hans Asperger. We also talk about LSD experiments involving autistics.  Their book is extensive and covers the politics and history of autism in over 500 pages. It even includes a chapter about me, your favorite autism webmaster and tv personality, Alex Plank.

Additionally, they cover the first person diagnosed with autism, Donald Triplett, in great detail.
This book is incredibly fascinating to read and I highly recommend that you buy a copy if you haven’t read it already.

Donvan and Zucker are currently enjoying touring the country to promote their book and educate individuals about their discoveries. I recently had the good fortune to run into them at the ASA conference in New Orleans where they delivered a keynote together.

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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.

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Children born to fathers of advancing age are at significantly higher risk of developing autism compared with children born to younger fathers, according a comprehensive study published yesterday that offers surprising new insight into one of the most feared disorders of the brain.

The finding comes at a time of great controversy over autism in the United States, as a recent surge in diagnoses has fueled speculations about various possible causes of the disorder. For scientists, both the origins of and potential treatments for the disorder remain a mystery.
With every decade of advancing age starting with men in their teens and twenties, the new study found, older fathers pose a growing risk to their children when it comes to autism — unhappy evidence that the medical risks associated with late parenthood are not just the province of older mothers, as much previous research has suggested.

Of special concern is the finding that the risk for autism not only increases with paternal age but also appears to accelerate.

When fathers are in their thirties, children have about 1 1/2 times the risk of developing autism of children of fathers in their teens and twenties. Compared with the offspring of the youngest fathers, children of fathers in their forties have more than five times the risk of developing autism, and children of fathers in their fifties have more than nine times the risk.

Autism is a developmental disorder that is often characterized by social and verbal problems. It becomes manifest early in childhood and is associated with learning deficits and other problems. Many cases are diagnosed shortly after children enter school, where differences among kids become too obvious to ignore.

A wide variety of interventions are increasingly available for autistic children, and early behavioral interventions have been said to help with outcomes and functioning. There is, however, no cure for the disorder, and scientists are not sure about its biological roots.

The new study presents an intriguing new avenue for research, because it suggests that genetic traits passed along by fathers, as opposed to mothers, may play some significant role in creating susceptibility to autism. Several other studies have suggested that older parents of both sexes are at greater risk of having children with developmental disorders. Three earlier studies looking at the relationship between paternal age and autism have produced mixed results; the new study is the most rigorous analysis conducted to date.

The study was based on an enormous sample of 17-year-olds — nearly all the male and three-quarters of the female subjects of that age found over a six-year period in Israel, as they came of draft age. In all, data from 378,891 people were analyzed.

Since all Israeli citizens have a unique identification number, and the draft process routinely calls for listing the identification numbers of parents, researchers were able to develop a large-scale map that allowed them to determine the age of both parents for 132,271 draft candidates. They then compared that information against medical evaluations conducted by the draft board for autism and other disorders for those same candidates.

Abraham Reichenberg at the Mount Sinai School of Medicine in New York, along with several others at research institutions in the United States and Israel, found a significant relationship between paternal age and autism, even after accounting for other factors, such as mothers’ age and socioeconomic status.

Children of fathers who were 15 to 29 years of age had a risk of about six in 10,000 of developing autism. Children of fathers in their thirties had a risk of nine in 10,000. Children of fathers in their forties had a risk of 32 in 10,000, and children of fathers who were older than 50 had a risk of 52 in 10,000.

In a paper published yesterday in the Archives of General Psychiatry, the researchers said that the number of cases of autism among families with the oldest dads was too small to lead to definitive conclusions about that group, but that there was little doubt about the overall trend. The only question, they said, is whether the risk accumulates at an accelerating rate with advancing paternal age, as the numbers in this study suggest.

Scientists in the United States are increasingly thinking about autism in terms of a spectrum of problems, which is why they have coined the term “autism spectrum disorders.” The federal government estimates that the risk for autism spectrum disorders in the United States is around 3.4 for every 1,000 children between the ages of 3 and 10.

Whether that number is on the rise has been hotly contested; better outreach and diagnostic efforts may be finding children who would previously have gone undetected. Enduring disparities in access to health care complicate the picture. While the medical complexities of autism are present in Israel, concern over disparities is mitigated to some extent because Israel has universal health insurance, which guarantees equal access to care.

The Israeli military draft board’s medical diagnostic system does not differentiate among conditions on the autism spectrum, which includes autism, Asperger’s syndrome, Rett syndrome and what are known as pervasive developmental disorders.

Autistic people can be unresponsive in social situations, or focused intently on a single task or object for long periods. While some parents recognize that their babies seem different from a very young age, U.S. government researchers also say that sometimes engaging and babbling babies can suddenly turn “silent, withdrawn, self-abusive, or indifferent to social overtures.”

In recent years, concern and controversy have grown — despite a lack of conclusive evidence — that mercury in children’s vaccines produces toxicity that leads to autism.

While the link between older fathers and autistic children is likely to be genetic, the researchers who conducted the new study also acknowledged the possibility that unknown other factors could simultaneously be causing men to delay parenthood while independently increasing autism rates.

© 2006 The Washington Post Company, used on Wrong Planet under the doctrine of fair use

By Shankar Vedantam
Washington Post Staff Writer
Tuesday, September 5, 2006; Page A01

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“In the past, concern about a potential link between MMR vaccinations and autism led some parents to take the drastic step of refusing to inoculate their children against dangerous childhood diseases like measles,” says Dr. Fombonne. “This action resulted in resurgence of the measles, which caused the deaths of several young children in Europe.” Dr. Fombonne’s study indicates that autism rates continued to increase even with reductions in the use of MMR vaccinations. “We hopes this study will finally put to rest the pervasive belief linking vaccines with developmental diseases like autism,” says Dr. Fombonne.

Autism is a neuropsychiatry disorder that impairs a child’s ability to communicate and interact with others. The prevalence is about 65 cases per 10,000 people (about 1 child in 155) making autism one of the most common childhood disorders. The Psychiatry Department at The Montreal Children’s Hospital sees about 350 new cases of autism each year. However, Dr. Fombonne stresses that there is no demonstrated autism epidemic. He attributes the rise in autism rates to a broader definition of autism and greater awareness of the disorder.

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“I think there are going to be multiple different forms. Some forms have certain genes contributing to it and other forms have gene-environment type interactions.”

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