He thinks that the human brain is constantly facing challenges like those solved by a navigation system in your car, but on an immeasurably more complex scale. The people whose thoughts travel the interstates of the mind more efficiently can get things done, and fast. They are the stars of mental organization. The people whose brain navigation keeps their thoughts on local streets and back roads are disadvantaged, because they can’t move the data their brain requires to operate efficiently between the areas that need to be coordinated.
My friend Temple Grandin talks about this a bit in her 2013 book The Autistic Brain. She agrees that mental organization is key to successful independent living, and that’s a well-recognized problem for autistic people like us. Dr. Just has studied both of us in his scanners. He’s shown us areas where we lack paths that ordinary people have, theorizing that those differences may explain some of our areas of disability. He’s also shown us places where we have more connections than the average person, which may explain our unusual skills and abilities.
Impressive as that was, I discovered they were doing a lot more. And that was the real story, as far as I was concerned. “We’ve learned how to read a number of emotions from brain imagery,” Dr. Just told me. “And we can recognize distinctive patterns that appear in your brain in response to things that you see. We can show you pictures of a dog and a house, and the brain scans will tell us which image you are seeing at the moment.”
I was stunned by his words. If that was true, the researchers were reading minds! I wondered why some government official hadn’t swept in and taken over his lab. Maybe they just don’t know about it, I thought, but I kept quiet because Dr. Just wasn’t done talking. (In 2016, as this book goes to press, most of Marcel’s new research is funded by defence-related government agencies.)
“One of our questions is whether patterns of brain activation are the same for everyone, or if they vary for people with neurological differences. We explored that in a group of kids with reading difficulty. We looked at the areas that light up when typical people read. Then we looked at the areas that lit up in the kids with reading difficulty and spotted some differences. When we provided one hundred hours of reading exercises that strengthened the inactive areas, the kids became better readers. The most dramatic finding was that a white matter tract whose function was deficient before our training improved after, to the same level as in kids who didn’t have a reading problem.”
What a brilliant piece of work, I thought. And that was where TMS came in. “We wondered if we might combine the data from our imaging with technologies like TMS to find and fix weakness in a very targeted way.”
That made me think of the road maps Dr. Just was making. If he could identify roads that were less passable in people with disabilities, could TMS open them up? That was essentially what Alvaro had proposed at the start of the TMS work. Now Marcel had effectively shown us how to find those cognitive choke points. Lab tests have shown that making a neuron fire repeatedly causes it to grow more white matter around its axon and become “stronger.” If TMS can help build up neurons, then the big question becomes where to stimulate. Alvaro and Lindsay had to choose targets based on research in animals, whose brains do not always mirror humans, or on general knowledge of the brain. That was a chancy approach because stimulations a few millimetres apart can have totally different effects. But Marcel’s imaging techniques might provide precise individualized targeting data, and that could help create the winning combination.
Marcel agreed. “We didn’t use TMS in the dyslexia study,” he told me. “But I certainly wondered if TMS might jump-start the process or super-charge the result.”
I couldn’t agree more. It seemed like Alvaro’s team and the CMU/Pitt folks would be perfect complements to each other. If only research worked that way! But it doesn’t, as I’ve learned in my experience reviewing grant applications. Scientists tend to come up with ideas and then approach funding agencies on their own. They often don’t know what distant researchers are dreaming up unless they meet at conferences or read their published results, and there is no central coordinator.
If you think that’s a major weakness in the way we fund medical research, you would be right. Most of the people who review the grants are researchers themselves, with allegiances to their own institutions. And even if they aren’t, they are bound to keep what they read confidential. If a Yale reviewer sees two complementary applications, one from Duke and another from Penn, she cannot put those people together, even if that would be better than funding either alone. Government contracting officers can do this, but it seldom happens, for a variety of administrative reasons. The rules that protect scientists’ intellectual property hold everyone back in that regard.
I began to see myself as a possible bridge, because I’m not a scientist and I’m not in conflict or competition with any of the researchers. By speaking up about the promise of technological combinations I hoped I might somehow help make it happen. As smart as each scientist is, he cannot possibly keep on top of developments in every field, especially those far removed from his areas of interest.
The imaging technology being developed in the CMU lab is a good example of that. All medical researchers know what basic MRI is; radiologists have been using those systems for many years. (Marcel reminded me that Paul Lauterbur hatched the idea for the MRI scanner in a hamburger joint right next to CMU, an achievement for which he was later awarded a Nobel Prize.) Functional MRI is also fairly well known. In fMRI, the scanner makes a series of images that show the distribution of oxygen throughout the parts of the brain that are working actively, usually while the subject is performing a task.
That’s enough for most physicians. Dr. Just had been in that same place a few years earlier, and he wanted more. He asked what would happen if he joined forces with CMU’s computer science people and they used a supercomputer to analyze the image data. Instead of using humans to look at computer monitors, computers would run millions of incredibly complex analyses. The results of that effort are stunning in their breadth and capability.
Dr. Just uses a Siemens scanner to read activity in a subject’s brain as he or she views pictures, words, or sentences on a computer monitor. When the person in the scanner sees a photo of a golden retriever, many different areas in their brain light up in a characteristic pattern. When that happens, the computer recognizes that pattern and says, “Dog.” Next comes a piece of fruit, and the computer says, “Apple.” This takes place without the subject uttering a word. The scanner is simply reading the brain’s activity in response to seeing different images. The computer is powerful enough and fast enough to compare that data against a database Dr. Just is building, and when a match is found, “Dog” or “Apple” pops out.
And that’s not the end of it. Computers can analyze brain scans to reveal a person’s inner states of mind and possibly even intent—machines may soon predict what we will think of next! Dr. Just’s system can currently recognize most major emotions, even multiple emotions that often occur together. So he can tell what we are looking at, and how we feel about it, with a startling degree of accuracy. And they have only just begun. They’re getting all this information from an analysis of just 1 percent of our brain mass. A few years from now his computers may recognize several thousand words and a hundred emotions, at which point the machine could truly hold a conversation with your mind and you wouldn’t have to say a word.
The possibilities for treating disorders of the mind are staggering. Comparing the brain activity of an ordinary person with that of someone with a disability, we can see with unprecedented specificity how the disability affects the working of the mind. That may lead us to ways of normalizing or changing those brains and fixing disorders at an elemental level.
When I suggested that to Dr. Minshew, she agreed. “Imagine a future where the evaluation for people with concerns about their mind and brain involves a short interview to define their needs and goals. We’d follow that with brain imaging and a
blood draw for genetic sequencing. Those test results will yield a precise diagnosis, identification of the specific cognitive, brain, and genetic mechanisms causing the person’s concerns, and a treatment plan for the mind and brain that is specific to that person.
“Imagine that,” she continued. “That is what scientists and clinicians are striving together to attain. Dr. Just’s neurocognitive research is only one example that shows that such a future is feasible. The potential life improvement from combining rTMS [repetitive TMS]* with emerging cognitive rehabilitation treatments, informed by the latest genetic advances, is huge.”
We are truly on the brink of a new era for treatment of the mind.
* In this book I have used the term “TMS” to describe all the stimulation techniques I experienced. To be more specific, therapeutic TMS uses multiple pulses and is also called rTMS or burst TMS. Single-pulse TMS is used more for measurement rather than treatment, as when Lindsay applied single pulses to find the power level necessary to make my fingers twitch.
A Death in the Family
AS A YOUNG MAN, when I encountered death on the highways or violence in the nightclubs where I worked, my autistic oblivion provided me with a kind of psychic protection. Sort of like Novocain at the dentist, I told myself when I figured it out. As I got older and had more life experiences, the anaesthetic wore off and I felt more empathy for those around me. I’d always had feelings, of course, but autism had prevented them from being triggered in many situations; however, once I’d scraped my own leg a few dozen times I began to get a sense of what someone else might be feeling when that happened to her. I might not have felt the same way others did, but my responses still moved more into the socially acceptable range. Good as that was in many ways, my autistic protection began to dissipate. Then I met the TMS scientists, and they worked their magic on me. That was the end of my detachment from death.
That’s partly why I felt such fear and dread when I got a text message from my first wife, Little Bear, in the summer of 2013. “I may need you to take me to the hospital,” she’d said. I didn’t see the message right away, and by the time I could answer she had already gotten herself there. I followed as quickly as I could.
When I arrived at Cooley Dickinson Hospital she was resting on a bed in the emergency room, waiting for news. Her blood pressure had collapsed. She felt weak, and her heart was racing. Their first thought was internal bleeding, but that was ruled out a few hours later. That left anaemia, or something worse. Cubby came down from Vermont, and Maripat arrived a few minutes later, but none of us knew what to make of this news.
Something about the situation struck me as terribly ominous. Nine years earlier, I’d walked into a hospital room after my father fell down. He was almost seventy, and he’d been in and out of hospitals a number of times in the previous two years. That time didn’t seem much different from all the others. But somehow I knew it was. As soon as I was out of his sight I’d started crying because I knew he was going to die.
Now I had that same feeling looking at Little Bear. She wasn’t old, she wasn’t crippled, and there had been nothing to suggest it in her words. Still I was sickened when I heard her voice. Something inside me said, She’s not going to make it. I knew it with absolute certainty, and I felt like throwing up. Even now I cannot say why I had that feeling. We had been separated for many years but I always loved her, and she was the mother of my son. If she went, a piece of me would die with her.
And I wasn’t the only one who started worrying. She was very close to Cubby, and Maripat and she referred to each other jokingly as “sister wives.” Mary taught Maripat to shoot handguns with her at the Smith & Wesson range, and though a few of their escapades made me twitch my ears a bit, the way they brought the family together in the three years they’d known each other was truly remarkable.
And now this. The blood transfusions restored her energy, but they did not fix the problem. Even worse, we learned about a new problem: immunity. The body protects itself from disease with white blood cells, and transfusions don’t replace white cells. The only way to get them would be for her body to make them. Her white counts weren’t zero, but they were very low.
“That’s a real danger,” the doctor said. “People with low white counts are vulnerable to any infection at all—things a healthy person would shrug off without even noticing. There must be something wrong with her bone marrow.”
That’s what anaemia and leukaemia are—diseases of the marrow. One’s a cancer and the other is, well, just unknown. They ran all kinds of tests on her blood, tested her for known cancers, and found nothing. We wondered what was wrong, knowing deep down that whatever it was, it wasn’t going to be good. The haematologist at Cooley Dickinson wasn’t sure what to do with her. He suggested transferring her to the specialists at Mass General, two hours away in Boston.
Mass General is one of the best hospitals in the country; if you have a serious problem there’s no better place to be. Mary spent a month out there, but the best doctors in the country couldn’t find an explanation. The facilities were beautiful. She was on a top floor, in a private room, with a view of the city. And unfortunately, the choice private room wasn’t because she was a pampered celebrity. She was in a room of her own because her immune system was failing. That’s what they told us. Anyone who went to see her had to disinfect at the door and put on a mask. The air in her room was specially filtered. They took every step they knew to prevent her from getting an infection, because anything can kill you if your immune system isn’t working.
Eventually her white counts went up and they said she could go home. All of us pitched in to clean her house as spotlessly as we could in time for her return. A few weeks later, after coming home from the hospital, Little Bear went back to work. She had math and science classes to teach at Salter College and work to do in the hacker space on guitars. She took an order from Ace Frehley for a new light guitar and the repair of his old one.
Every couple of months, Maripat and I took turns driving her to Boston for transfusions of blood at Mass General. We’d sit in the waiting room and read as she reclined in an easy chair and blood dripped slowly from the bags into her veins. She’d be weak and pale when we went in and flush and zippy when we left. The effects of the new blood were immediate, but transfusions can’t go on forever. Just as transplanted organs are rejected, the body rebels against blood that isn’t its own. The more times you do it, the more your transfusion options narrow and the harder it can get. Each time, we hoped the next transfusion would be the last, but in fact each one lasted less time than the one before, and as summer turned to fall, she had to call even sooner to get transfused. But the changes in her body made matching blood harder to find, and by wintertime we had to wait ten long days for her transfusion as they hunted all over for a match she wouldn’t reject.
There were other procedures too. She and Maripat went through most of those together. They did three bone marrow biopsies, and none of them showed a thing. Back at the Northampton hospital they monitored her blood counts weekly. Some weeks she was up, others she was down. She was making new blood cells, but not quite enough. The transfused blood was keeping her going, but everyone knew it wouldn’t last. Then, in mid-January, things changed. Surprisingly, the change was for the better. Or so it seemed.
Little Bear was so excited that she shared the news with us and her five-hundred-some friends online. She wrote, “I had the possibility of REALLY good news today. I saw my local haematologist after ‘the usual’ blood tests. I’m having a bad asthma flare and am on my second course of oral steroids since New Year’s. Suddenly, all of my blood levels are normal or near normal, after seven months of extremely low, not good levels. The local doctor said I may NOT have aplastic anaemia, and all of my blood problems might be due to an autoimmune disorder. That would be a LOT better because aplastic anaemia does not have a terrific life expectancy after diagnosis. I’ll see my doc at MGH in two weeks and she will have presented the current results t
o the team. Wish me luck!”
It sure sounded hopeful. Maybe it’s a miracle, I told myself. Keeping quiet about my earlier premonition, I hoped with all my heart I was wrong. That weekend, she went off to the Arisia science fiction convention and had a chance to connect with a bunch of her old friends from the UMass Science Fiction Society. That was where we used to hang out in 1980, when we first got back together after high school. She had to wear a gauze medical mask to the convention, because of the autoimmune warning, and Maripat’s daughter decorated it with a cat face for the occasion.
The following week she was out and about again. Salter College had its graduation ceremony and she was proud to don the robes she’d worn at her own doctoral ceremony nine years previously. In that time we had learned she too was autistic, and that knowledge went a long way toward explaining why education had been such a long and difficult road for her. She was just beginning to come out of her shell and talk about that, particularly with younger autistic women.
Two weeks later, the steroids were over and done with but the blood counts remained normal. Things were looking good. If only it had lasted. . . .
Somehow, everything changed in the space of a week. Little Bear celebrated February 5 in the local ER, after a bad blood test the night before. She’d gone to the doctor for a routine blood draw, but her readings were so far out of whack that he called her that evening. The high white counts got them thinking internal infection and immediate hospitalization. It didn’t make sense. “I’ve never felt this good,” she said, “while having a doctor tell me to call the ambulance.” She made a date at Mass General and got ready to drive there in the morning.
Maripat took her to Boston early the next day. They checked in, and Little Bear had more blood drawn. The results were back in an hour. This time her blood was full of blast cells. Alarmed by that, the doctors did a bone marrow test and came back with a diagnosis of acute lymphoid leukaemia. Cancer had reared its head, and in an aggressive and virulent form. “I’m just glad to have an answer,” she told us, but we knew she was terrified. The doctors must have shared her concern, because they decided to start the chemo in the morning. Maripat stayed on the sofa by the window and they faced the first night together.
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