Wednesday, March 23, 2016

Switched On: A Frank Conversation With Author John Elder Robison

[image: Book cover, with the title,
"Switched On: A Memoir of Brain
Change and Emotional Awakening"]
The new book Switched On is author John Elder Robison's deeply personal account of seismic shifts in his emotional, social, and perceptual responses to other people, the world, and his own memories -- due to participating in brain research on Transcranial Magnetic Stimulation (TMS) and autism. I spoke with Mr. Robison about his hopes in choosing this journey, its costs in terms of his own health and happiness, his autism advocacy, and the risk of frantic parents assuming his story means they need to use TMS on their autistic kids.

Thinking Person's Guide to Autism: Are you concerned that people might see Switched On as an argument for “normalization” treatments for autistic people? Even though you are careful to emphasize that “we cannot know the future, or the potential, of anyone,” even though you rail against those who see anything atypical as being “broken,” and even though you describe your autism diagnosis as “empowerment”?

John Elder Robison: I am already seeing people raising these questions online.  The first thing I want to say is, let’s cut through the bullshit.  There are no amorphous “people” looking to “normalize autistics.” We have moved a long way toward the world of Fahrenheit 451, but not that far.

What we do have are parents who may want to subject their children to powerful therapies like TMS in hopes of “curing their autism.” They may do that after hearing scientists talk of the power of early intervention. I think that is a huge risk, not just with TMS, but with powerful interventions in general. I have raised that question and continue to do so in my government committee service.

So let’s ask that another way: Should we be concerned that some parents will subject children to TMS just as they subject kids to powerful chelation, bleach enemas, and other ugly “treatments” in a quest to “cure their autism.” And to that I say, yes, we have good reason to worry. It’s already happening with things like chelation.

But TMS and my book are not the problem. The problem is one of societal shame around autism and parental inability to accept what is. There is no ethical problem with an adult like me going into TMS therapy eyes wide open. Using TMS to reshape a five-year-old is a lot chancier.

The problem is that we have a good ability to diagnose autism in very young children, but we do not have a good way to predict degrees of future disability or exceptionality. To apply TMS to those kids might head off any prospect of exceptionality and it might be the normalization some advocates fear.  So what can we do about that? Since we can’t stop the forward progress of science that leaves education -- the same tool we have to address ethical risks of autism and genetic tests. My advice is to start the conversation now, because therapies like this are coming, and I think my book opens the dialogue.

The other problem we must address is ignorance, or pseudo-knowledge. Somehow, in the last few decades, science in America has lost ground to faith and superstition. When I was growing up, we were taught evolution in science class. Period. Now, schools “teach the evolution-creation controversy,” or they “teach both sides.” There is no controversy, among credible scientists. Yet a large portion of the American public now doubts the evidence of evolution; one of the foundation theories of modern biology.

TPGA: Where does that leave a complex science-based therapy like TMS?

JER: That sets the scene for parents -- most of whom have no formal education in science or medicine -- to question everything they hear when it comes to autism and what should be done to accommodate, treat, or cure it. What some see as fringe science or even child abuse is perceived by others as smart parenting and standing up for our kids. We have a world where people equate TMS protocols developed at Harvard Medical School with bleach enemas they saw at an autism conference. When those people have guardianship of autistic children we have good cause to worry.

[I think] TMS is one of the most powerful tools available to the neurologists of tomorrow. Our goal should be to make sure TMS therapies are developed and used in a responsible manner. That means supporting research into the many possible applications, and examining the ethical questions presented by such a powerful tool.

TPGA: Your (now ex-)wife Martha and your son Cubby both thought you were fine before TMS, and Martha’s fears about you not needing her to be your emotion detector came to fruition -- you ended up divorcing. You were devastated that TMS caused you to lose your “emotional shield,” in terms of suppressing difficult childhood memories, and suddenly being able to perceive negative emotions in general — and patronizing or unkind behavior from people you’d previously considered friends specifically. You even had suicidal thoughts. Yet you were able to connect with and understand the emotional motivations of customers better, had remarkable and unprecedented emotional responses to music, and made a pact with yourself not to be mean. Was your TMS experience worth the journey and personal costs?

John Elder Robison
[image: A silver-haired white man,
wearing glasses and a striped polo shirt.]
JER: Looking back at the experience I’d say the benefits were great, but the cost was very high. Contrary to what I had thought, “getting smarter” is not a free ride.

For me, the TMS journey is intertwined with writing and autism advocacy. There’s no doubt I am more successful relating to casual acquaintances and business clients than I was a decade ago. And I don’t doubt that TMS facilitated a lot of that change. Yet I sometimes wonder where I’d be, had none of that ever happened. My business was considerably more successful before I took up writing and autism advocacy, and it’s quite possible I would be much more secure today if I’d simply stayed the course with cars and never picked up the “autism pen.”

That said, I have no doubt that my greatest gift to the world has been the sharing of my ideas about autism and growing up with the world. My car repair business never served a social purpose as my advocacy does. I do have critics and detractors but the overall commentary toward my work is strongly positive (hopefully that continues with this Switched On!!) But that’s a benefit to the broad public. What about the benefit to me? That is less obvious.

I certainly appreciate that my advocacy work has made me friends everywhere I go, and that is a remarkable thing.  And I appreciate that my advocacy work has taken me all over the world, something few people get to experience. The question is, am I happier having done that, versus remaining in my small city and running the car company? I don’t know. I doubt it.

As I travel and meet autistic people around the world I see a mix of hope for a better future and sadness for the oppression and discrimination past and present. I feel compelled to speak out, but that does not give me happiness. It’s more like a duty that I am driven to try and fulfill. I do my best with it, and maybe that has to be enough. As much as I enjoy meeting people and feeling like I am doing some good, the travel is exhausting and the stress wears me out.

For me, one central problem is that I am never able to relax and get free of anxiety for extended periods of time. I read that autistics are at greater risk of mortality and I suspect that is one reason -- many autistic adults share my anxiety issues. It would be great if there was a therapy to relieve that.  My anxiety is worse now then before I wrote my first book.

I volunteered for the TMS study because I hoped to relieve what I saw as a continuing disability in me -- my limited ability to meet and engage people. I also hoped I might take part in developing a therapy that could help younger autistics. I wanted to do that because I remember how difficult my own earlier years were. I believe I got what I hoped for and more, but there was a high price to pay for the insight and ability.

TPGA: What are your thoughts about TMS not building new brain pathways, but “turning on” what’s already there? Especially considering that autistic development is atypical, and many autistic adults report punctuated but increasing skill development and emotional maturity as they age. Also a lot of autistic people report being incredibly emotionally perceptive, often to the point of being overwhelmed, like you bursting into tears after your first TMS session, or your resonating with Martha and her debilitating depression. Is it possible that TMS jump-started your next phase of autistic growth?

Before TMS: Robison's photo
of Journey's Neal Schon

[image: white guitarist with curly
brown hair, mid-shred.]
JER: Yes, I think TMS supercharged the process of plastic change for me, with respect to people skills. The dramatic rate with which I acquired those skills after TMS was unmatched before or since in my life. The change in how I process photos was sudden, striking, and seemingly permanent. Those are both examples of plastic change.

Toward the end of Switched On I talk about visiting the labs of Marcel Just and Nancy Minshew in Pittsburgh.  They are studying the way autistic brains continue to develop throughout life, and indeed they measure changes in autistics 50, 60, and older. The Switched On story is a vivid demonstration of that, in my case.

I don’t have any way to know if TMS started a phase of growth or if it just supercharged particular areas of development. The thing is, the brain is so heavily interconnected that stimulation in one brain region could in principle have an affect almost anywhere else.

After TMS: Robison's photo
of Kansas's Dave Ragsdale

[image: Smiling white man with bushy
white hair, playing a fiddle. Photo
colors are highly saturated.]
TPGA: You were careful to highlight that being “emotionally blind” is not the same as not caring, and you cite a study in which autistic participants had identical physical (sweating, etc.) reactions to witnessing others in pain to non-autistic participants, even if their behavioral reactions differ and might be imperceptible to non-autistic observers. How do you think other people can be more considerate of autistic people’s emotional capacities?

JER: That is a hard thing to answer. What the study you cite showed was that autistic people have strong reactions to scenes they witness even as their faces and bodies gave little or nothing away. When it comes to dealing with other people and their reactions to us, that non-response is a problem. If we give no sign of reaction, we will be treated as if we do not care about the event just witnessed. That may have a negative impact on the autistic person but I don’t see how we are going to change that with the public, only ourselves.

After TMS: Robison's photo of an abandoned
railroad bridge in Dover, Vermont

[image: Inside of old metal railroad bridge,
against a blue sky.
Photo colors are highly saturated.]
We can certainly learn when a response is expected, but I don’t think we need TMS for that. It’s a skill we can acquire right now, by paying close attention to the dynamics around us. If my experience is a guide TMS could help but it’s an issue we can address either way. In my opinion this is the kind of skill we are wise to learn.

But that’s not what you asked. You asked how other people can be more considerate. I don’t see how we individuals can make other people more considerate, or change them at all in the short term. Education may have that long term effect. Legislation may help. But changing the public’s view of autistics is going to be just as long a road as changing the public’s view of (for example) African-Americans or Hispanics. I think members of those groups would say the American public has a long way to go in that area, even after fifty years of effort. 

TPGA You mentioned several times that autistic brains are wired differently than non-autistic brains, with both more and fewer internal connections, depending on the brain region. You also mentioned that autistic brain plasticity is unique. What is the current state of research in these areas of autistic neurology?

JER: Marcel Just is publishing studies on that now. I described his collection of brain imagery from autistics of all ages in Switched On. It’s a slow process, building his database. In the next decade I think researchers like Marcel will learn a great deal more about the connective paths in autistic brains versus non-autistic brains.

A few years ago Marcel published a paper in which he answered an age old philosopher’s question via brain imagery: "When you and I see a red ball, do we see the same thing in our minds? If I were to step into your mind at that moment, would the ball be red, or would it be green?"

By looking at the areas of the brain that light up when seeing balls of different colors, and by measuring our emotional responses to what we see, Marcel was able to establish that you and I do indeed see the same red ball. That level of brain imaging can tell us a great deal about how autistics and non-autistics process the world we experience.

TPGA: I didn’t realize until reading Switched On that you’d been diagnosed with prosopagnosia (face blindness) as an adult. That's not surprising in general as it's a common trait in autistic people, but it was surprising to me as you've always seemed to recognize me before I greet you. Can you share some of your strategies for recognizing people without relying on facial features?

JER: I do not know how I recognize people, given my abysmal results on the standard face recognition tests. All I can say is that it’s in context. I recognize cars when they drive into our service department and match them to their owners. I recognize people in situations. For example I recognize you reliably in the autism conference settings where we meet. But if I ran into you at the county fair, I might not recognize you at first.

I suspect recognition is a combination of situation, overall look (rather than just facial appearance) sound, smell, dress, patterns of behavior. However we do it, many autistics with face blindness get by well enough that the disability is never detected. So you might say it’s not a functional disability even as it shows up as one on lab tests.

Here is an interesting twist: When I queried the scientists (who were not autistic) they could not tell one black Mercedes from another. “They all look the same.” But to me, each Mercedes was an individual to be recognized. Does that mean I use the “face recognizing areas” to recognize machines? It’s a question for future study, one that may suggest some of us are adapted that way for a reason.

There’s no doubt most people benefit from recognizing other humans. But it’s just as certain that there are circumstances were recognizing a specific car, or animal, or something else is of equally vital importance. And maybe that was one of our places in society long ago. That’s an example of something that is almost universally called a disability today yet it may have evolved to facilitate our species’ survival.

TPGA: You write that “autism has given me a mix of disabilities and gifts,” including abilities you didn’t always realize other people lacked, like being able to perceive and count fluorescent light bulb pulses, and connect with and understand machines. I’m wondering how much you think your disability has to do with our society’s lack of understanding and accommodation for people who think differently?

JER: Well, my disability meeting and engaging people is not a societal thing. It’s an autistic thing.  If I have a problem reading expressions, eyes, body language and I respond in such a way that people are put off or reject me ... that is not really a society problem. And that was what I hoped to address with my own TMS.

I was disabled in that regard at age five, and age forty-five. And I would have been disabled in the same way, had I lived in 1916 or 1716. The only difference would be that the farther I went back in time the smaller the group of people around me would be and the fewer strangers I would meet (as a general rule). That might have reduced the impact of that particular disability but it would still have been there.

TMS did help with that, and my ability to engage new people is markedly improved today.

I have other traits of disability (GI trouble, minor Tourette's-like shaking, perseveration, and anxiety) that are also autistic and not societal. As it happens, the TMS study I took part in did not target those issues, and they would have been the same in any place or time. That said, there are TMS studies looking into anxiety and perseveration by stimulating different regions.

Some of the societal exclusion issues I talk about in my earlier books (such as failing me in school when I gave a right answer but could not show my work) were not really addressed by the TMS study I took part in.

TPGA: How worried are you about unscrupulous cure-mongers, and others, using your book to push TMS as an autism treatment (some agencies are are already offering TMS for autism) despite all your caveats -- including that your personal experience was research, not therapy?

JER: Switched On describes TMS as a promising therapy for certain aspects of autistic disability, subject to further scientific study and validation. Every scientist you meet in my book is associated with a major university medical school. I specifically raise the concern that TMS by its nature could be administered by anyone, anywhere. So, yes, there is a concern about that but it’s not because of my book. It’s the nature of the technology.

When you raised this question you cited as an example a paper on the Brainsway website.  As it happens Brainsway is one of the makers of TMS equipment approved by the FDA to treat depression. It should not surprise us that Brainsway is supporting research into using their devices to treat other issues -- like autism. My concern is not with them. My concern is that TMS devices are easy for electronic technicians to make, and in principle home built machines could pop up anywhere.

Right now, you can go online and order a do-it-yourself direct current brain stimulation device that is marketed as a tool to sharpen video gaming skills. That kind of thing concerns me but as that example shows, my book is not the driving force. Rather, it’s the opposite -- it opens the ethical discussion.

At this moment the TMS equipment makers will only sell systems to doctors trained in their use. Can those doctors use the machines “off-label?” Sure. But I don’t know if the ethical issues there are any different from those of the medical doctor using traditional psychiatric meds off label. In both cases we have to assume they are trained licensed professionals with the best interests of patients at heart. 

Sure, you will say, not all doctors meet that high standard. But again that is not a TMS issue. It is a “rogue doctor” issue.

TPGA: What would you say to those who ask how you could evangelize an unproven autism treatment even though you have said you are OK as you are?

JER: Social isolation is one of the biggest components of disability for autistic people.  The inability to “read other people” is at the heart of that, and my TMS experience shows that we have the ability to do that locked inside us. In this case “locked inside” is a very apt term, as TMS activated the ability in me for a time, but even with knowledge and experience I cannot access it on my own.

The fact that TMS “switched on” the ability strongly suggests that the wiring is in place, as there was no time for my brain to build paths, and I did not need any practice to use the skill.

If you had experienced that -- as I have -- you would push for more research into it, too. Accepting how I am does not preclude my embrace of therapies or tools to make myself the best I can be.

As for it being an unproven treatment -- of course it’s unproven. The book is a story of participation in scientific research. That is clear. The only way we get proven treatments for anything is to do the studies. Switched On makes a strong statement regarding the potential for TMS, and I hope it drives further attention and study.

That brings me to a larger philosophical question. Do autistics need treatment at all? If you say “I am an autistic person” you are describing a way of being, and you may well feel you are fine with your place in the world just as you are. Or you may wish for help with certain autism-related problems.  When it comes to autism problems, social disconnect is a big one and it surprises me that people are so quick to challenge a possible helpful therapy.

Right now, for social isolation, we have next to nothing. With TMS there is a possibility of real help for those who want it.

TPGA: What’s next for TMS?

JER: The Switched On narrative shows the power of the TMS technology. Right now, TMS is available to treat depression at 1,000 clinics nationwide. Given that a large percentage of autistic people suffer from depression, this should be welcome news.

The studies described in Switched On continue, and they could be accelerated if there was public pressure on the funding sources. Going forward, TMS is under study for anxiety in autistic people. It’s being tested to improve executive function, and to suppress the cravings of addiction.

TMS is also being studied as a tool to suppress epileptic seizures. That could be a lifesaver for people who are more severely impacted.

Switched On is the first account of transformative change with an emergent medical technology.  It’s my hope that it will start a conversation that leads to greater progress in research and greater understanding of the profound ethical questions we will face as we learn to help the mind rewire itself.