Tuesday, December 15, 2015

Are Geeks Narcissists? A PLOS ONE article asks the question . . .

In a recent PLOS ONE journal article, researchers Jessica McCain, Brittany Gentile, W. Keith Campbell posit that perhaps geek culture is a way of sustaining a narcissistic self-view.

Geeks with Swords (c) JE Robison
While I agree that it might look that way on the surface, I think their conclusion is wrong; founded upon an incorrect or incomplete understanding of geeks and geek culture. With all due respect, I suggest that perhaps the authors made an all-too-common mistake. They interpreted observations of self-focused behavior as narcissism, when they were actually seeing autistic traits; either autism or the much more common "broader autism phenotype."  As a result, the article as it stands is harmful to autistic culture, and geek culture, because it perpetuates a wrong stereotype.

The article focuses on the geek community’s outsized interest in online gaming, massive multiplayer games, role playing games, and science fiction, or comics or fantasy.  Games and conferences have grown so large that they’ve become major cultural events.  And people naturally draw conclusions about those who attend, and how they may be different from others in the community.

It’s well known that we geeks get lost in our own worlds, and in fantasy worlds of various sorts. The question here is, why does that happen?  If a person is fully aware of the wider world, but chooses to ignore outside signals and focuses on himself that is narcissistic.  If we do that because we are oblivious to much of what goes on around us, and we are blind to the signals of others, that is an autistic spectrum trait.

Most autistic children experience bullying and mistreatment, growing up.  That is an unfortunately consequence of acting differently, and being insensitive to other kids.  As they get older, autistic kids often withdraw from social contact, even as they desire it.  They may gravitate to online communities, where they are less likely to appear different or disabled, and in fact may seem exceptional due to their intense focus.

To a large extent, that explains the path autistics follow into gaming and fantasy.  It’s founded on isolation and social disability, and narcissism has no part of that picture.  Yet narcissism is often assumed by observers, incorrectly.   That is a natural reaction for a person who is not autistic. They see various signals from other people, and it never occurs to them that an autistic person next to them might be oblivious to the same signals.  So when the autistic person fails to respond as they do, they assume his lack of response is deliberate and informed, when in fact it’s not.

In comparison, narcissism is saying “I see you, but I love myself more than you or anyone else.”  That is seldom the situation for autistic people, who tend to suffer from the opposite – chronic self-loathing and poor self-esteem.  When it comes to self-focus, autistic people do so because they are not fully aware of the people around them, because they have a communication disability.  That is the essence of autism. 

After reading this essay in original form, BU Psychology Professor Catherine Caldwell-Harris pointed out that geeks (or nerds as others say) are also drawn into online worlds and gaming in part because they have strong systemizing tendencies, which are traits of the broader autism phenotype. Cambridge researcher Simon Baron Cohen has written a lot about systematizers and that kind of thinking.

My experience as an autistic adult informs my interpretation of geek cultural observations.  As an autistic person I know all too well what it’s like to miss the signals others around me see, and suffer as a result.  Am I suggesting every geek is autistic? Of course not.  What I am suggesting is that a great many geeks have some autistic traits and a considerable number are on the spectrum.  And I’m sure a few are narcissistic too, but I believe autism is the best explainer of the behaviors described in the paper.

We should be very careful about applying labels like narcissist to large swaths of the population. It’s particularly noteworthy that the approaches one would take to deal with narcissism are fundamentally different from what one would use to address autism. Treating autistics as narcissists will not only be counterproductive, it will be harmful.

Thanks to my wife, Maripat Robison, author of the forthcoming memoir I Married A Geek for bringing the PLOS ONE article and its fundamental errors to my attention, and inspiring this response.  As for the scientists - I bear you no ill will but I urge you to think how the targets of your future articles will feel about your words. 

John Elder Robison





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's served 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.

Tuesday, December 8, 2015

Congressionally Mandated Autism Research and the Need for Community Reviewers

Last week I went to Washington to review autism research proposals for the Department of Defense.  Most people have no idea Defense does autism research so I’d like to take a moment to explain . . .

A NIH Autism committee in session (DoD is similar)
The proposals I reviewed are part of a program called the Congressionally Directed Medical Research Programs. They are part of what’s popularly called the peace dividend.  That is, when we are not spending money to fight wars, some of that money is spent on medical research instead.

In FY14 the program invested one billion dollars in 3,500 research projects.  Six million of those dollars went to autism, and the allotment for this year is similar. The CDMRP website has details of where the money goes and I encourage you to check it out.

The exact nature of the proposals I looked at is confidential, to protect the intellectual property of the scientists.  But what I can say is this:  All the proposals were for treatment trials, each of which was meant to have a high impact on the target population.  Some were drug trials, some were behavioral therapies, and others were tests of devices or tools to assist us. 

The winners of the awards will be announced next year.  You can read about last years winners on the CDMRP website now.

There will be another round of research reviews next year.  Proposals are typically evaluated a couple times a year.  And that is where you may come in.  I was the only autistic person reviewing autism grants.  CDMRP has a mandate to get community input into research, but they do not have a reservoir of autistic people to do this.

They do have parent reviewers, but non-autistic parents (well meaning as they are) are third person reviewers, not first person reviewers.  Autistic parents (like me) are actual autistic reviewers, which is what they need.

This does not mean there is no role for parents.  Quite the contrary.  Parents are the best reviewers to speak for those children who cannot speak for themselves.  But autism is a lifetime condition, and most autistic people can speak for themselves, and in this context they/we should do so.  The ideal reviewer is an autistic parent with an autistic child, because that parent will know both perspectives.  The ideal review committee will have all points on the spectrum represented by a group of community members.

As it happened, there was a much larger cancer review program going on when I was there.  EVERY community reviewer for that program – and there were a bunch – was an actual person with cancer. 

If you are an autistic person with a desire to help the community I urge you to volunteer to be a reviewer for programs like these.  The science officers NEED input from actual autistic people on what matters to us, what may work, and what won’t.  You don’t need in depth knowledge of the science (though all knowledge helps) but you do need to think about research priorities and ethics.


I’ve put a link to the program here. Check it out and let me know what you think.  Can you be a reviewer?

You don't need to be a scientist.  A big part of your job will be to tell the group if a particular study will be beneficial to the community, and why (or why not)  Maybe you will see ethical issues - bring them up!  What they need most is the autistic person's point of view.  A good example would be the scientist who says "that's an aberrant behavior) while an autistic adult would say, "No it's not.  Its a comfort mechanism.  Your words can cast things in a totally different light, and that is very important.

All of the Congressionally Directed Medical Research is guided by input from community members. In the case of autism, the team that organizes the grant reviews has had a hard time finding autistic adults who are willing to invest the time in learning the issues, and who want to serve.  If you are such a person, they would love to hear from you.  They also need more parents, and if that's you, go for it. One twist in their application process is that they want a recommendation from a university or advocacy organization, because they expressly seek people who can represent the broader community and not just themselves.

So, for example, you might apply with a nomination letter from ASA, or ASAN.  One reviewer I met was nominated by Autism Speaks.  You might also apply with a nomination letter from a group like the Yale Child Study Center, or the Thompson Autism Center in Columbia, MO.

Reviewers are paid a modest honorarium. They cover your (our) travel costs, and give an allowance for meals.  There's one other thing you get: Connections to the science community.  You'll meet scientists who are committed to helping our population, and the science officers ad DoD who oversee the effort.  You won't meet the people who are applying for grants that day - you will meet other scientists who are reviewing the applications with you. That said, any of them might be applying for funding instead in the next round of reviews.  That's how the process works.

Even if you can't talk about the specifics of what you review publicly (research confidentiality), I guarantee you will come away with a lot more knowledge, and hope for the future, and the knowledge that your input is helping steer that future in a way that benefits our community.

That will make you a better self advocate, and hopefully it will encourage you to take part in more science reviews.

This is the description page for the autism program

Here's the contact info for Carolyn Branson, who handles the review boards. The grants are given by the Department of Defense, and overseen by government scientists. They use her company - SRA - to handle the logistics.

Consumer Reviewer Administration Manager, Peer Review and Science Management
SRA International, Inc.  |  www.sra.com 
8490 Progress Drive, Suite 200, Frederick, MD 21701, USA
301.360.2150 x2056 (office)  |  240.203.5270 (mobile)

carolyn_branson (at) sra.com   

If you write her, tell them I sent you.  Seriously.  We need reviewers throughout government. It's our chance to have a voice, and shape our future. Grab it!

John Elder Robison


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's served 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.

Monday, December 7, 2015

Is Change Coming at Autism Speaks?

Today’s news that autists Stephen Shore and Valerie Paradiz have joined the Autism Speaks Board of Directors came as a surprise to many.  The announcement follows on the heels of other big news from that organization:
  • Mr. Wright has stepped down as chairman and resigned from the board;
  • Mrs. Wright has stepped back from the organization after a cancer diagnosis;
  • President Liz Feld has announced she will be leaving soon;
  • Chief Science Officer Rob Ring has announced his resignation.


 It’s possible that a new day is about to dawn for the largest and most controversial autism organization.  For the first time, they have put actual autistic people in positions of power.  They may take more positive steps when the top management is replaced (time will tell.) 

I certainly hope the organization can change its focus to one that is more constructive, and less demeaning to autistics.  I hope we’ve seen the last of the ugly missives like “I am Autism,” Suzanne Wright’s offensive 2013 editorials, and the suggestion that autistic people are somehow MISSING (we’re not.)  They’ve got a powerful PR machine.  Maybe they can use it to say the right things, for a change. 

It’s harder to raise money when there are no villains and demons, but it can be done.  Will they rise to this challenge, or fall back on the old ways? 

I’m not an insider, so I have no special knowledge, but I have some concerns about the board and some big donors.  In the past, a significant amount of Autism Speaks funding came from people with anti-vaccine agendas, and followers of fringe or discredited science.  How much influence do those people hold today?  I don’t know, but it worries me in light of their history.

It also concerns me that the volunteer base is so heavily dominated by parents. That’s really what the group is: AUTISM PARENTS.  Can they embrace actual autistics to truly begin to speak for the community?  There are a few autistic volunteers there now, and that’s a good sign.

After I wrote this, several people wrote me privately to remark on the role of parents.  I've edited my post to add the following, to clarify that my words were not anti parent; simply a recognition that the actual autistics come first in an autism advocacy group.  An autism parent group, on the other hand, is the opposite.

Autism Speaks has always portrayed itself as the former while effectively being the latter.


With those words, I don't want to make parents out as demons or villains. They have made very real contributions to the autism movement, and in fact we'd be nowhere without them.  But autistic kids grow into autistic adults, and for such a large organization, the percentage representation of actual autistics involved with Autism Speaks is far lower than it should be. My words are in no way an indictment of parents, simply a recognition that Autism advocacy is first and foremost about Autistic people, and secondarily about families.  Both need support, and their wants and needs may sometimes differ and even be at odds.

I wish Valerie and Stephen all the success in the world in moving Autism Speaks onto a healthier course. They join Kerry Magro, Amy Gravino, and the other autistic volunteers who have struggled to turn that ship these past few years.  The organization’s fundraising power could do tremendous good, if redirected in a constructive way.  Over the past decade, too much money has been wasted on nonproductive science, and too little spent on real deliverable benefit to the community.  Critics have said this for years.  With the leadership stepping down, there’s an opportunity for the next management to seek a new direction.

Autism Speaks would be wise to focus on this goal:

Develop tools and therapies that benefit the people who live with autism today.  

Let go of the genetics, and the pharma studies that may pay off for the next generation.  Autism family concerns are today.  If the families who funded the science you've done so far knew what it got them, would they fund it again?  Or would they look to someone who truly has their interests at heart?

I hope they succeed.

Autism Speaks has taken a step by appointing two autistics to the board.  Let's see what happens now.  Will Autism Speaks Listen?

(c) 2015 John Elder Robison

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's served 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.