Rethinking Autism As A ‘Whole Body’ Condition

We often think of autism as a disorder of the brain. And it certainly is. But a new book, “The Autism Revolution,” (Random House) by Dr. Martha Herbert, an autism expert and pediatric neurologist at Massachusetts General Hospital, and CommonHealth writer Karen Weintraub asserts a more comprehensive and wholistic view in which autism is really a condition of the whole body and should be treated with that in mind.

Here is an excerpt from the book:

Chapter 1: Go for the Extraordinary

Caleb tore himself away from a game with his sisters, bounced into the kitchen and asked his mom what she was making for dinner. It was one of his favorites: gluten-free pasta and ground beef.

He started to turn back to the girls, but paused. “Mom,” he said, as casually as if he were commenting on the weather, “my autism is gone.”

“How do you know?” his astonished mother managed to ask.

“It’s easy to be with people now,” the 10-year-old said matter-of-factly, and then headed back to his younger sisters.

Joy Petersen stared, dumbfounded for a few seconds in the middle of the kitchen. It wasn’t until two months later that she realized he was right.

Caleb has his father’s bright blue eyes, his mother’s dark hair and a complexion that reflects his mixed Dominican-American heritage. He is still looking up at 5 feet, and his voice remains a little boy’s for now. He wants to be a zoologist when he grows up, and is already talking about going away to college, although he understands that his parents will be sad to see him go.

She recently took him to a new doctor, a specialist in treating children with autism and other special needs. Caleb noticed the photographs covering the doctor’s wall, and asked why the doctor was holding a gun in one of them. After talking to Caleb and his parents for a while, the doctor announced that Caleb didn’t fit the criteria for autism anymore. “Yeah!” Caleb said, jumping up and pumping his arms. His mother began to sob uncontrollably.

Joy used to dream of the day someone would say her son was no longer autistic. Of the day he’d come up to her, say he loved her and really mean it.

That day was unimaginable when Caleb was 4, still had no language, and was so afraid that he would wail and cry when anyone other than his parents came within 5 feet. Joy said she would put her fingertips on his body and he would scream as if somebody had hit him. Taking care of Caleb was so overwhelming that she would often find herself in tears. There were times when she was so afraid of hurting him in her anger and stress, that she’d put him down, walk into her bedroom, shut herself in her closet and collapse on the floor, crying.

The doctors and therapists told her she had to be realistic. Your son will probably be like this forever, they said. You can try lots of different things, but none has been proven to work.

Joy decided to start trying them anyway. And to her surprise, everything seemed to work, at least a little. No one thing took the autism away, she said, but all of it put together helped a lot.

By the time Caleb was in first grade, everyone thought she’d succeeded. He was able to follow simple instructions. His repetitive behaviors – the spinning, stick tapping and high-pitched noises – had mostly stopped. He was able to sit in a mainstream classroom with an aide. This is as good as he’s going to get, they told Joy. You’ve done the best you can.

But she wasn’t satisfied. Her heart told her that there was more to do.

“I still had a disconnected boy,” she said.

“People would tell me he’s high functioning, he follows directions – and I’m like that’s not what I want…I want a boy I can look in the eye and I tell him I love him, and he knows what I’m saying…I want a boy who can look me in the eye and tell me he loves me…I want a boy who can take in the world and absorb it, not run away from it…Absorb it, not run away from it,” she repeats for extra emphasis.

She has that boy now.

See what we believe or believe what we see

For decades, doctors have told parents that autism was a genetic problem in their child’s brain, and that it wasn’t going anywhere – that they should expect their toddler’s troubles would be with him/her forever. Autism has long been defined by its deficits, by what the child is believed unable to do: communicate, control himself, function like everyone else. Parents might make improvements around the edges – reduce the tantrums, limit the crazy behaviors, get the child to follow directions – but the essential deficits would remain.

After years of researching autism and treating patients at Massachusetts General Hospital, after years of meeting children like Caleb, I have come to the conclusion that these views simply can’t be right.

(Dr. Martha Herbert, MGH, asserts that autism is a 'whole body' condition. Photo: Adrian Jones)

I have met many, many people like Caleb who are doing remarkably well, often after making improvements more dramatic than anyone ever dreamed possible. Some showed amazing bursts of improvement, transforming from nonverbal and withdrawn to A-student with lots of friends. Some reached adulthood with a stable job and just a few quirks. Some still can’t talk but communicate through painting, music, glassblowing or eloquent words typed on a keyboard. Some, now adults, are professionals, parents, artists, friends, or all of the above.

It may be difficult to imagine now, as you are struggling to help a 4-year-old who screams more than he speaks, but many people with autism have grown up to lead fulfilling productive lives.

The more I worked with my patients, the more I realized I had a choice: to “see what I believed,” or to “believe what I see.” If I believed that autism was a genetically determined, lifelong brain impairment, then I would have to deny to myself the extraordinary capabilities and changes I saw in my patients. If I believed what I saw, then I would have to re-think everything I knew about autism.

That’s what I proceeded to do, and you are reading the result of that exploration.

For going on a decade and a half, I have thrown myself into taking a fresh look at autism. I have probed into generations of science, and compared the research with the theories built around this evidence. I have been inspired by a growing body of exciting new findings and new areas of research, which points to new ways of helping people with autism. And I have allowed myself to be touched by people with autism who offered me fresh perspectives and ideas and expanded my world.

More than genes and brain: also whole body and environment

In all my research and reading, I have never found proof of the genes-hopelessly-mess-up-the-brain-for-life model of autism. Genes absolutely affect the brain, but there’s no solid proof that they’re the only players.

Geneticists have been searching for autism’s “smoking gun” for more than a decade, but have only identified genetic “defects” in a small minority of people with autism – leaving the vast majority of autism genetically unexplained.
Meanwhile babies who seem normal for the first year or two, regress into autism. Scientists used to believe that all autism was caused by brain damage before birth. Some children with autism do seem different from the start. But a lot of children appear perfectly fine before slipping away over weeks or months. Studies of home videos and direct observations have confirmed that this occurs. Regression into autism makes it hard to just blame genes that kick in late, and makes you wonder about whether environmental stressors play a role too.

And many children do get better. There is no proof for the common assumption that if the diagnosis involves a genetic mutation – like Fragile X or Idic 15, or others presumed present but not found yet – that means the person is frozen with “impairment” and “deficits” for life. In 2008, I was among a group of researchers who published an article called “Can children with autism recover? If so, how?” Some of these researchers had shown that between 3 and 25 percent of children once diagnosed with autism are eventually told they do not have the condition. They gathered a group of scientists together to ask how this could happen. Their genes certainly don’t change in a few years, so they were either misdiagnosed or, like Caleb – who was rigorously diagnosed – after lots of treatment, their symptoms faded so much that they no longer belonged on the autism spectrum.

Autism can even change over minutes, hours or days – and then change back. Children with fever or on steroids for a medical problem like asthma can show improvements in communication and social interaction, which fade after the fever goes away or the steroids are stopped. If autism were totally genetically hardwired this couldn’t happen.

Meanwhile genetics cannot explain the rising frequency of the condition. When I first got involved in autism research in 1995, people thought that 1 out of every 3,300 children had autism. As I write, the figures are approaching 1 in 100. Genes take generations to evolve, so either we have been oblivious to autism, or something other than genetics is causing autism more often. There is still some debate about whether autism is truly rising or whether factors like greater awareness and diagnosing people we would have missed in the past are causing the increase. But more and more reputable studies are finding that at least half of the surge can’t be explained away.

By now, most researchers agree that genes don’t act on their own to cause autism. Genes may lead to vulnerability – they may “load the gun” — but so much of the time, it’s environment that “pulls the trigger.”

Finally, although I’m a Harvard neurologist – an expert in the brain and nervous system – I have come to believe that just as autism is not simply a genetics problem, it is not simply a brain problem, either. Autism involves the whole body. As a physician, I’ve seen so many autistic children with similar medical problems that I can’t believe it’s just a coincidence. And we know through thousands of scientific papers and an ocean of clinical experience that the health of the body can affect the function of the brain.

At this point, I think there is enough evidence to say that while autism certainly involves the brain, it is really a problem of the whole body, including the brain, from molecules to cells, from organs to metabolism, from immune to digestive systems.

An autism revolution

If you add environment to genes, add body to brain, take seriously the powerful brilliance of many people with autism and the profound transformations and loss of diagnoses we are seeing more and more, you get a very different story than the “hopeless-genetic-lifelong-brain-damage” tale that most of us thought was the truth.

The story you get is of problems that can be solved, illness that can be healed, and extraordinary capabilities that can come out of hiding and make powerful impacts on the world.

Caleb got better because his mother was persistent and she believed in his full potential even when everyone told her he had improved enough. If he could really get better, how many other kids can get better too? How many others have hidden brilliance that the world needs to see? My commitment is to transform autism so everyone has their best shot at becoming all they can be. I know so many children like Caleb and so many brilliant and fulfilled people with autism that I feel ethically obliged to tell these stories so we can figure out what makes them possible. Armed with this knowledge, we can go forward and make this great opportunity accessible to as many people as possible.

We can’t afford not to have an autism revolution

It’s terrifying to imagine our future without this revolution.

The financial costs alone of raising our autistic children are staggering, with estimates ranging from $35 billion to $90 billion per year just in the United States. That assumes autism rates stop increasing, which they haven’t yet. And of course, children with autism usually grow into adults with autism, so those costs will be with us for decades if we don’t take action. At a time when America is still reeling from recession and when budget cutting seems to be the nation’s top priority, what will we do if there is not enough to go around to give everyone the help they need? Wouldn’t it be a good idea to address autism early and effectively?

If we continue to believe that autism is a lifelong hopeless condition we will be patient with slow progress because we won’t see how you might fundamentally help people. When we see people with autism improving, we will deny that they had autism to begin with. This kind of circular thinking breeds inertia, countless missed opportunities and lost dreams that damage not just the individuals who are left behind but the fabric of our whole society. More and more people will be autistic, more hearts broken and more counties and states bankrupted.

Now take a moment to envision a world where everyone believes that there are many parts of autism we can do something about, and that when people with autism are transformed, it is real and has something vital to teach us. Think about the energy and resources we would pour into tackling solvable problems. Imagine all the loving and happy family interactions, the creative brilliance unleashed and the benefit to all society.

Thousands of children like Caleb are teaching us the paths to success. They did it in spite of a system that told them they couldn’t, and shouldn’t. Imagine what we could do if we took these successes seriously and learned how to achieve them better and for many more people.

I believe that autism is not a genetic tragedy, but an unfolding and unprecedented catastrophe, related to many other health and environmental crises. Our world is making us sick. We need to build a world that makes us healthy.
Remember that for your child you are a path-breaker. You may become a path-breaker for others as well. The first step is perhaps the most potent: Take a stand with hope that your child can change, not just a little bit, but profoundly. Joy stayed firm with the vision that her son could get the most out of life. You can do this too.

Caleb got a lot better, many other children get a lot better, and your child may too. These experiences can teach others how to become healthy, move beyond autism, and fulfill their potential to be extraordinary.

(If you want to learn more, see Karen’s related piece in today’s Boston Globe).

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