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.

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 fourth installment of Autism Talk TV, I sat down with Peter Bell, vice president of Autism Speaks. In our interview, Peter Bell discusses his role at Autism Speaks in addition to what it is like to raise an autistic son. Peter also speaks about the controversial issue of finding a cure for autism and what it means to him as a father. Peter was also recently a guest star on NBC’s Parenthood, in which an autistic boy is one of the recurring characters.

I enjoyed talking with Peter and I think you will be moved by his story. Hopefully interviews such as this will help to shed light on the similarities between those of on the spectrum against the notion of “cure” and parents who are trying to give their children the best life possible.

Read on for the video!

The post Autism Talk TV Ep. 4: Peter Bell of Autism Speaks 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?