Both Sides Now – Living Between Alzheimer’s and Autism
Alicia Hart can tell you more about the brain than you may ever care to know. For the past six years, she has traveled from the frontal lobe around and back again, learning how information is processed, where sequencing and problem-solving occur, and how fear originates, all in an effort to see the world through the eyes of her seven-year-old autistic son, Ewan. The maternal instincts that guided through her older daughter’s formative years – the ability to anticipate fear, for example – were useless when it came to Ewan.
So when Hart, a mother of three from Illinois, began spending more time with her grandfather last December, the feeling of déjà vu overwhelmed her. She’d been shuttling himback and forth to the hospital to visit her grandmother, who had taken a bad fall and landed in the intensive care unit. While driving with him, Hart began to pick up on some familiar quirky behavior. He kept telling the same story over again, as if in a continuous loop. Like Ewan. He kept asking in what direction Hart was driving, obsessing about which way was north, and continuing that questioning when they were inside buildings – like Ewan would obsess when he didn’t understand the answer to a question.
In the days and weeks that followed, her grandfather’s confusion, frustration and disorientation would lead to a diagnosis of Alzheimer’s, but to Hart, much of his behavior looked an awful lot like autism. Both her son and grandfather had difficulty with impulse control, sequencing and direction. Both used repetitive questioning and stories as a way of handling anxiety. Both needed predictability and routine. Both struggled with controlling emotions.
“There are a lot of little links,” says Duke University’s Christine Hulette, who herself has a nephew with autism and a father with Alzheimer’s disease. A neuropathologist and professor, Hulette directs the Alzheimer’s diagnostic research and human genetics centers there.
Maybe more than a lot. And maybe more than coincidence. While researchers there and elsewhere are running DNA testing, trying to unlock the genetic codes for autism and Alzheimer’s, and watching real-time images of brains at work, visually trying to unravel their wiring, the caregivers on the ground are finding each other at support groups and online. They are seeing the same things, sharing stories, and seeking advice.
These caregivers, sandwiched between a parent or grandparent with Alzheimer’s while raising a child with autism, face daily issues of managing what seems to be a similar disorder appearing at different life stages. And then there are their lingering concerns about what might be lurking in the family medical history, and what that portends for the future. But in all this, they’ve found a silver lining in clouds of generation-spanning heartache. What they learn about one disorder actually helps inform and guide them, at least in the management of the other.
And when they have time to muse, they are asking similar questions. Before her grandfather’s diagnosis and while learning about autism, Alicia Hart had made mental notes about how neatly her grandfather – an engineer and “all-around math genius”- fit the profile of those with milder autism spectrum disorders like Asperger’s syndrome, jokingly diagnosing him with “engineer’s syndrome.” Once diagnosed with Alzheimer’s, though, she began to wonder, “what if Alzheimer’s is merely the end stages of life with an autism spectrum disorder?”
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The brain is front and center on Joy Hirsch’s conference table at the fMRI Research Center, deep in a basement lab at Columbia University’s Medical Center. There, Hirsch sighs as she looks at the mounds of paper, medical journals, and post-it notes creeping across her desk, about to overtake that rubberized model of the brain. “This is how I work best,” she admits. “The piles keep me organized.” Organized is what you’d expect from one of the leaders in the field of functional imaging of the brain. Hirsch, once a full- tenured professor at Yale and now director of Columbia’s Program for Imaging and Cognitive Sciences (PICS), spends her days looking at pictures of the brain at work. Patients come her way for assessment of conditions that have a possible neurological connection – including those with autism and Alzheimer’s – as do volunteers participating in one of the many studies ongoing in the program.
Dressed like the quintessential successful New York professional – silk skirt and jacket, chunky silver rings on several of her small, slender fingers – Hirsch moves quickly past a cart of snacks sitting against a wall in the reception area. “Looks like we’ve got some testing about to begin,” she notes, peering at the plastic containers of chips, nuts, gummy snakes and fruit chunks piled on the cart. “Most likely for an eating disorder study,” she adds, explaining that her staff would be taking pictures of a participant’s brain reacting simply to the sight of these foods.
In a room at one area of the center, a patient is getting ready to lie down in the long tube-like full body scanner. Once inside, the patient will respond to prompts to complete a task, and in an adjacent room, staff will be viewing an image of the brain in real time, observing highlighted areas implicated in the task. In another room at the end of a long hallway, an elderly woman participating in an Alzheimer’s study is doing the same. Wide-eyed, curious and a little apprehensive, she is peeking around the scanner and inspecting wiring by the wall, trying to figure out what exactly is about to happen.
“We used to think of the brain as this receptacle of things coming into the brain,” said Hirsch while whisking through the hallway. “But now we know it’s not about what’s coming in through the holes in your head – your eyes, your nose your ears your mouth – that’s not what your brain is about at all. The brain is about volition, it’s about strategizing, organizing, it’s about cognition. Cognition is this flexible use of information that’s coming in. The brain’s been reorganizing itself since day one.”
Back in her office, Hirsch picks up the brain off her table and her eyes brighten, the look of someone who’s on to something big. “We recently completed a study, looking at the neurocircuitry underlying the language system in the brains of children with autism,” she begins, twisting open the model to reveal the brain’s core. “And what we discovered, quite unexpectedly,” she added, highlighting the path on the model with her finger, “is that the system is perfectly intact, that the wiring and circuitry, from front to back, is no different from that of the controls.” Hirsch then explains that although the wiring is there, the fibers are programmed for something other than language. “It’s there, it’s all connected, the highways are there, but it’s not sensitive to language in the same way. It’s more sensitive to song. So we can activate that pathway with intonation and song, and rhythm. It suggests a whole lot of things about the atypical use of these areas.”
To Hirsch, the autistic brain and the Alzheimer’s brain are two very different species. “With functional imaging, we find the autistic brain looking normal, but when the child undertakes tasks or is put in situations, expected areas of brain engagement don’t happen,” she notes. “So connections are missing that allow information to be transferred. With Alzheimer’s, we know that the connections were once there, and decline is due to growth of plaque that prevents neurons from firing, from transferring information.”
Or, more simply put, says Hirsch, “one is a broken brain, trying to be normal, and the other, a normal brain broken,” she says.
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In a small office at the Sid Jacobson Jewish Community Center in East Hills, N.Y., Connie Wasserman is fielding calls about the many programs the center offers for special needs children and adults. A social worker by training, Wasserman has been involved for more than 12 years at the center, organizing and directing respite programs for people of all ages suffering with brain-related disorders. “We have one of the only after-school respite programs for students with autism, and the only program – that I know of anywhere – for adults with early onset Alzheimer’s,” said Wasserman. Spending that many years with patients facing varying cognitive challenges, she borrows freely from what she learns for one group, adapting tools that are effective for the autistic child, for example, for use with an Alzheimer’s patient.
“We have a program we call “Boost” for our autistic children, based upon the “Have Dreams” program out of Chicago, that uses a lot of visual prompts to provide structure and consistency,” said Wasserman. “And what we’ve learned is that those tools can be very effective for Alzheimer’s patients as well. This is especially true of those with early onset Alzheimer’s, whose executive functions go first. For them, it’s all frontal lobe stuff, the same as in autism.”
For example, for the Alzheimer’s program tables will be set up by task – one for eating, one for crafts, and importantly, one designated as a “safe table,” where participants can go when they start to feel anxious or confused, said Wasserman. There they’ll find books, puzzles or other simple activities that can help ground them, she added. And the schedule for the program is displayed on a large, laminated poster, with a Velcro arrow that’s moved down the chart when the time comes to move from task to task.
“Even before the “Boost” program, we’d already been using some of the same ideas,” said Wasserman. “Both groups need structure and consistency to provide security. And the goals for both are essentially the same. For the autistic children, help promote independence. For our seniors, help maintain independence.”
Alicia Hart started borrowing too, realizing quickly that the reserve of coping tools she’d developed from helping Ewan provided a road map for helping her grandfather. “I went back to thinking about what visuals need to be used,” she said. “Back to thinking about schedules, about sequencing strips and about how to problem solve through all of life’s daily tasks. And of course, now beginning to wonder what kind of help he would need in remembering where he is in time and space.”
Visual triggers, for example, helped center both in place and time. “With my grandfather,” Hart said, “we learned that when he found his old neighborhood, and saw his street sign, that triggered his sequencing skills. So we went and took a picture of him by the sign, and he carries that picture with him now, so when he gets lost it will help set off that trigger.”
Since her grandfather lacks the routine of school and therapy that her son gets, Hart made lists and signs that she puts on his refrigerator door to remind him of what his day would involve. “They’ll say something like ‘Yesterday I did this. Today is Tuesday, and I’m going to do this.’”
And when his recent move from his home to an assisted living facility turned his world upside down, she created a slideshow for his digital frame, identifying people he knew by name and sequencing the pictures in time order so that he could remember what was past and what was present.
That caregivers like Hart and Wasserman borrow freely from what they know about one disorder to manage the other does not surprise Columbia’s Joy Hirsch.
“Look, first of all it’s mostly women, as we know,” said Hirsch. “And we’re incredibly efficient. Life’s very crowded, so we do a lot of things in parallel. The way we do that is we make one solution apply to another situation. You’ve got one solution, use it everywhere you can.”
And she appreciates that questions about causation and genetic predisposition are inevitable for those seeing these cognitive disorders playing out across generations in their families. “At the end of the day, what you have in front of you is your genetic history,” said Hirsch. “If you have people in your genetic line with a heritable disorder, you know you’re at risk. You simply know that.”
But management of both disorders is what confronts these caregivers on a daily basis. Given that the science is uncertain, Hirsch looks for clues that can help in that management, alluding for example to the findings about activating the language system fibers of autistic children with song. “We’re interested in not just what’s going on with the brain, but also what we can do about it – and there may be some answers there,” said Hirsch. “So we can offer hope.”
* * *
“Is autism Alzheimer’s in reverse?” That’s the question writer Adonya Wong posed on her blog “Healing Through the Eyes of Autism.” She had every reason to ask; her son has autism, and her grandmother, Alzheimer’s. Both were diagnosed in 2005, and since then she’s seen more and more similarities in behavior – repetitive or incoherent speech, difficulty reading social cues, fixating on objects – enough so that she began doing her own informal research online. “Looking for any ‘similarities’ between the two, I found approximately 1,850,000 search results to read,”’ said Wong.
Despite the rise in the incidence of each of these disorders, clear cut medical and scientific answers about causes and treatments do not exist. Indeed, uncertainty begins with a diagnosis that is often more art than science. There are no medical tests that confirm the existence of either Alzheimer’s or autism. Rather, a diagnosis emerges following a clinical evaluation of a patient’s cognitive development relative to a norm – for Alzheimer’s, has memory loss or other declining functions progressed beyond normal aging, and for autism, are social and language skills lagging behind typical childhood development – as well as the exclusion of other possible conditions – a stroke, for example, which may impair memory, or a hearing impairment which might affect language development.
Recent breakthroughs are encouraging, but certainly not dispositive. “We know only this much,” said Gerald Fischbach, former dean of the faculties at Columbia University Medical Center and now director of the Simons Foundation Autism Research initiative. “Both disorders bring about similar effects in the brain, and both involve synapses, the communications between nerve cells in the brain. But synapses are very complex.” Different genes may be implicated, different regions of the brain may be impacted, and certainly, different life stages are involved, he added. Because specific causes have yet to be established, doctors are loathe to engage in speculation about any correlation about the disorders.
As progress is made in both the functional imaging and genetics areas, researchers around the country now appreciate that, because both Alzheimer’s and autism are cognitive disorders, findings relating to one can inform what is known about the other, whether about causation, brain functioning or disease management. For example, at Massachusetts General Hospital, which recently announced a $29 million gift to expand its autism work in both genetics and functional imaging, researchers found that the brain’s “white matter” is enlarged in children with language problems, whether or not they have autism. Findings like that can have implications beyond autistic functioning, said Martha R. Herbert, a pediatric neurologist there, in connection with the announcement. “Ultimately, I expect we will learn broadly about the biological basis for human communication and also how the brain and the body affect each other,” said Dr. Herbert. “That’s a tremendous ‘side benefit’ to these studies and I expect that they may be helpful in expanding our understanding of other diseases like Alzheimer’s, dementia and other neuro-degenerative disorders.”
And at the University of Miami’s Hussman Institute of Human Genomics, research into the genetic underpinnings of both Alzheimer’s and autism is occurring side-by-side. Led by Dr. Margaret Pericak-Vance, groups there have made several breakthroughs over just the past year, including the identification of the first common genetic risk factor for autism, as well as nine genes that may increase susceptibility for Alzheimer’s disease. Those findings, said Pericak-Vance in a press release, are meaningless if they cannot be translated into practical application. “If I walk into a fourth-grade classroom [and ask] does somebody in your family have cancer, heart disease, Alzheimer disease– by the time I list all of these diseases that we work on here, every hand is up because it affects everybody,” says Pericak-Vance. “It’s the idea that genomic medicine, personalized medicine, the things we do here, will be translated in the future into prevention and care.”
* * *
Her grandfather didn’t know where he was. That’s what scared Alicia Hart most. She’d taken him out to dinner, dropped him off at his house, and headed back home. A short while later, around 9:00, he called her, upset and very confused. “He forgot that we ate dinner together and drove out to get something to eat, became disoriented and got lost in his own small town,” said Hart. “He ended up on the interstate and at a café 20 miles down the road.” Thankfully he asked for directions from café owners who knew him and were able to guide him back home. “It was 10 below that night and had he gotten lost and ran out of gas, he surely wouldn’t have made it.”
It was not the first time she’d had a call like that, one that takes the wind out of you like a sucker punch. There was the call from her son Ewan’s school a few years back, when he was in kindergarten. “He told his new classroom aide that he needed to go to the bathroom,” said Hart. She told him to go right ahead. “So Ewan did. He went to the bathroom, washed his hands and then walked out the school’s front door, crossed a 5-lane highway, and headed for home.”
“That’s my biggest fear,” added Hart. “That they’ll leave places without thinking.”
For solace, Hart looks beyond the complex world of gene-mapping and brain imaging to the support groups and networks she’s developed over the years. For wisdom, she draws on their collective experiences. Since Ewan’s diagnosis, she’s read, written and spoken to doctors, therapists, social workers about his condition, blogged about her experiences, participated in support groups and met with countless others raisingautistic children. She now speaks to audiences, runs those support groups and presents at conferences. And since her grandfather’s diagnosis, she has expanded the reach of her activities. “You’d be surprised,” she says, “when I start talking about living between autism and Alzheimer’s, how many people are in the same situation.”
They meet in living rooms, in clinics and at hospitals. That’s how she met Pam Kelly, a 42-year-old postal worker who lives only a few miles away and has a mother with Alzheimer’s and an 8-year-old son with autism. “We have used our similar situations to be a source of strength for others as well as for each other,” said Kelly.
They seek each other out online, where they exchange stories and offer advice, often about how they are borrowing from one disorder to help manage the other. When someone posted about the travails of having both autism and Alzheimer’s in the family on an Alzheimer’s Association forum, over 200 people responded, asking questions about environmental links and genetic research, exchanging similarities in symptoms and sharing advice for caregiving help.
And they ruminate about intriguing interactions between their afflicted children and elders. “When I bring my son to visit my mother,” said Pam Kelly, “I can’t help notice how much they are drawn to each other. Maybe it’s because they’re on the same wave length mentally,” she adds, “but they have a presence with each other that is striking.”
Adonya Wong has the same observation. “My son and my grandmother are fascinated with one another,” writes Wong. “He doesn’t know what Alzheimer’s is nor does she have any knowledge about autism. However, it is obvious to the observer that they “get” one another, that there is a deeper level of knowing. Perhaps it isn’t for me to understand. When I watch them, I see purity and innocence; I don’t see two people frustrated by the cards dealt them.”
It is perhaps no small measure of comfort for caregivers that their children, parents and grandparents can seem to find calm in the presence of each other, even while they may appear to the outside world to be in the midst of confusion.
After Hart’s grandmother died in January, she wondered how each would react to the news. For any 7-year old, death is a complex enough notion, and Hart wondered how Ewan would process the news and whether he’d be able to empathize with his great-grandfather. She also worried whether the news would hasten her grandfather’s unraveling and throw him into an extended state of confusion. When the two met up, though, they seemed to understand each other perfectly, reducing the abstractness of death to simplicity. “If you are so sad Grandpa, where are all your tears?” asked Ewan, who’d come to understand that sad faces come with tears.
“I think I used them all up,” answered her grandfather.
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(Ed. note: This is a repost of an article completed in May 2010.)