Carly’s Voice

reaching autistic child, non-verbal autism, technology for autism, voice assist for autism, aphasia in children,

Carly Fleischmann was unable to communicate. Diagnosed with autism and related disorders by the age of two, she screamed, threw herself to the floor, smeared feces, moved constantly, and barely slept at night. An attentive family plus hours of daily therapy helped teach her rudiments like walking and feeding herself. Experts advised her parents to consider residential care.

But one day during a therapy session, Carly reached for the computer. Slowly, using one finger, she typed

help

teeth

hurt.

Her therapists were astonished. It took months and much coaxing to get her to use the computer again (at that time, an augmentative communication device). But she began to recognize that communication was essential. Technology made it possible.

What emerged from her arduous single strokes on the keypad showed a girl who wasn’t mentally retarded, as her doctors suspected, but someone spirited, insightful, and intelligent. She wrote about wanting to have fun with normal kids. She asked to do things she’d always wanted to try. And she tried to convey what it was like to live in an autistic body. She explained that behaviors (like banging her head on the floor and bleating loudly) erupted from her like liquid would burst from a can of Coke when it had been shaken and opened. She said those behaviors helped block the sensory input of sight and sound that constantly overwhelmed her.

A few years ago, a segment about Carly’s new-found communication aired on 20/20.

Now Carly uses technology to communicate with a world that’s ever more open to her. She keeps up with a busy Twitter  feed and Facebook fans. She answers questions, promotes autism awareness, and says that she feels part of a larger community by connecting with people through social media.

Technology allows Carly to share what she calls her “inner voice.” Check out Carly’s Cafe, an interactive web video, to experience a coffee shop as she experiences it. And take a look at the memoir she wrote with her father, Carly’s Voice: Breaking Through Autism
to better understand this bright engaging girl whose world unlocked thanks to a keyboard.

Oh, and don’t think Carly’s drive to move forward has slowed. Now 17 years old, she was recently asked to appear on a panel at The Nantucket Project, a prestigious request for any expert, even more impressive that she would be their youngest ever. Senator John Kerry was also scheduled to give a presentation. She tweeted him in advance, challenging him to take a seat on the panel so she could ask him questions. Her challenge was retweeted thousands of times by her followers and Sen. Kerry did indeed do as she asked. Her first question to him was, “What have you done in the Senate to help autism and do you think it’s enough?” Watch the video here.
We may not know what sparks autism, from inflammatory responses in a pregnant mother’s body to systemic changes in the body to another step in emerging neurodiversity. We do know that Carly and many more like her are with us, speaking in voices we’re meant to hear.

Alzheimer’s & Autism: We Can Change This

When we come across a new truth we can see how it connects to larger truths. Sometimes that’s uncomfortable, strange, or paradigm-shifting. Sometimes it’s so logical we wonder how it’s not part of our everyday conversation. 

Lately I’ve been reading new research findings. What I’m seeing amplifies what we can see on a larger scale—that we need to work with nature rather than try to control it. In terms of our health that means we must look very carefully at how tactics we’ve used to subvert nature’s designs (relying on chemical fertilizers and pesticides, feeding grains to ruminants, overprocessing foods, genetically modifying foods, super obsessive hygiene, and so on) come back to affect us (and our planet) in ways we hadn’t anticipated. Let’s talk a little about Alzheimer’s research, then dip into some studies about autism. It’s good news!

I got my first real job when I was 13. It was at a nursing home, where I fed residents who were unable to feed themselves. It was a heart-wrenching experience. There were a few people who suffered from cognitive decline, mostly due to stroke or hardening of the arteries. But most people were there because they couldn’t manage living alone after developing heart disease or emphysema, breaking a hip, going blind, or other overwhelming physical problem. Their frailty frightened me but I also learned a great deal from people 70 and 80 years older than me. In that 100 bed unit, back in the 1970’s, there wasn’t a single patient with Alzheimer’s disease.

Sure, the life-disintegrating disease was first identified in 1901. And yes, detection and diagnosis may very well change the way we track those numbers. Still it’s clear there’s an massive increase in the incidence of Alzheimer’s. It’s seen most often in the developed world, while in rural areas of India and China the risk is very slight. This devastating disease robs of us of our loved ones. It deprives our culture of the elder wisdom we so desperately need. I know of several people who developed it in their late 50’s and early 60’s. I know people suffering with it now. It’s not the new normal.

Recently, some amazing studies have emerged. They aren’t particularly useful to the pharmaceutical industry, where research is geared to big profits in prescription drugs. They aren’t easily applied by the medical establishment which leans toward medications, treatment, and surgeries. Instead they have much more to do with what we eat and the way we live. The clues lead not only to breakthroughs in understanding Alzheimer’s disease but also the rise in autism. Please read the linked information, as I’m only giving a brief overview.

We’ve been advised by experts for decades that dietary cholesterol causes heart disease (it doesn’t, no matter how exhaustively you look at the research). We’ve been prescribed a lifetime of statins when our cholesterol levels are deemed “too high” even though cholesterol is essential for brain function. We’ve been told to eat low fat diets, particularly to avoid foods that we humans have been eating for eons. We’re even told our friend the sun, which fuels all life on this planet, is an enemy best defeated with sunscreen.

Yet we are substantially fatter, developing autoimmune disorders at epidemic rates, with a terrifiying surge in autism and Alzheimer’s disease. A report in the New England Journal of  Medicine forecasts a decline in life expectancy in the US.  Clearly we’re on the wrong path.

Blood sugar surges, infection, and inflammation are a few of the many interrelated ways that our brains suffer from an unnatural diet. I urge you to read the technical but entirely worthwhile article by MIT researcher Stephanie Seneff, titled “APOE-4.” To me it reads like a detective work starting with how our brains function, then following clues the brain gives us. She explains how cholesterol contributes to healthy brain function, which is why she urges daily intake of natural fats along with high levels of protein. She also points to the importance of maintaining normal vitamin D and calcium levels while avoiding the rush of elevated blood sugar that comes from eating much of today’s processed foods.  Following her recommendations helps to steer the body away from inflammation and infection which can seriously impair brain health. She also has nothing nice to say about statin drugs.

Her report is in keeping with more recent research (building on studies done over the last few years) that Alzheimer’s disease is related to damage caused by years of blood sugar spikes, which are the side effect of the average western diet. It’s being called diabetes of the brain or type 3 diabetes. This has been all over the news that last few weeks with headlines like “Junk food destroys the brain.” It’s quite a bit more complicated than that (for example, mindfulness practices like meditation reduces inflammation too) but those headlines aren’t lying.

This research also ties in to the increased incidence of autism. A low fat diet plus low vitamin D levels can cause changes to a fetus’ developing brain (please read all the way through this linked article for details). This sets off a cascade of issues, including poor calcium uptake and inflammation. Other promising research links a pregnant woman’s inflammatory response to higher rates of autism in her child. There are other underlying factors, including immune systems that are insufficiently challenged due to overly hygenic lifestyles and even the absence of parasites. And again, it’s much more complicated. It can be related to the father’s age, to gut bacteria, even to one’s ethnic group. Some say autism is the next step in human development, opening us to wider neurodiversity.

There’s no fault implied in any of these studies. We do the best we can with what we know. But maybe today’s brains are struggling to tell us that well-meaning attempts to make our lives better with sterile environments, processed food, and indoor lives simply takes us too far from our roots in nature. More research needs to be done, but there’s plenty we can do right now.

eat anti-inflammatory foods 

eat healthy fats 

get enough vitamin D

exercise

For more information check out:

Know Your Fats : The Complete Primer for Understanding the Nutrition of Fats, Oils and Cholesterol

Nourishing Traditions: The Cookbook that Challenges Politically Correct Nutrition and the Diet Dictocrats

The Happiness Diet: A Nutritional Prescription for a Sharp Brain, Balanced Mood, and Lean, Energized Body

Gut and Psychology Syndrome: Natural Treatment for Autism, Dyspraxia, A.D.D., Dyslexia, A.D.H.D., Depression, Schizophrenia

The Wild Life of Our Bodies: Predators, Parasites, and Partners That Shape Who We Are Today

Learning Disabilities Linked To Environmental Toxins

toxic waste causes learning disabilities, prenatal exposure to pollution, my child affected by pollution,

fema.gov

Parents of children who struggle with learning disabilities or health problems are familiar with questions that keep us awake at night. Is it genetic, congenital, dietary? Is it my parenting? It is fate? While helping our kids every day to gain new strengths we still search for the cause, hoping we’ll find lasting solutions.

Of course, learning problems have been observed in children for generations, but evidence is mounting that toxins in our highly industrial world are a contributing factor. Today, one out of every six children has a developmental disability. Many of these conditions affect the nervous system: developmental delays, learning disorders, sensory deficits, autism, and cerebral palsy.

Most of us are familiar with studies linking lead (largely from old paint dust and chips) and mercury (from coal-fired power plants, certain fish) to cognitive and behavioral problems.

We’re also aware that BPA found in plastics like food containers, toys, lining of metal cans, and beverage bottles can impair brain function in mammals, via hormone signaling in areas of the brain related to forming memories and retaining information. Choosing only eco-friendly versions of these products doesn’t remove the danger entirely. Even goods marked “BPA-free” can contain damaging chemicals.  And this exposure isn’t just linked to plastics. It’s also found on store receipts!  While debate continues over the effect of these chemicals on our health, it’s interesting to note that studies conducted by independent scientists show adverse effect while those financed by BPA-using industries tend to show the risk is negligible.

Some of the newest research points to cadmium as another potential culprit. This heavy metal naturally occurs in the earth’s crust, but cadmium is released through smelting, burning fossil fuel, incinerating waste, and using phosphate fertilizer—where it’s taken up by food crops such as root vegetables and grains. Cadmium exposure also comes through tobacco smoke, even some toys and jewelry. Children with high levels of cadmium in their urine were found to have more learning disabilities and special education needs. These neurocognitive problems were reported by parents in a study of  2,200 children ages 6 to 15, and more studies with data directly from schools and physicians are needed. Although we can modify our habits to limit exposure to most toxins, the presence of cadmium is largely out of individual control.

We’re also discovering that exposure to all sorts of modern-day chemicals before birth and during the formative years may be related to later learning problems. These chemicals are ubiquitous. An article in the medical journal The Lancet, titled “Developmental Neurotoxicity of Industrial Chemicals –A Silent Pandemic,” reports that half of 201 chemicals identified as neurotoxic are produced in high volume (more than 1 million pounds each year) and over 20 are often found in chemical waste.

follow-up report by Harvard School of Public Health identifies 278 additional neurotoxic chemicals. A multi-national effort is underway to test for developmental toxicity. Experts estimate that up to a quarter of the 80,000 to 100,000 chemicals in use around the world may show neurotoxic properties.

For those of us who know the hope and hard work required to raise children who have additional burdens, such test results are only the beginning. We want action to protect the brains and bodies of every child.

Take Action

Follow EPA advice and information about protecting kids from toxins in the home

Check out specifics about toxins in skin care products your children use.

Get involved in the Environmental Working Group‘s Kid-Safe Chemical Campaign

Support the Clean Air Council‘s push to reduce the emission of mercury, arsenic, and dioxin from coal-fired plants

Contact your legislators to support the Safe Chemicals Act

Use the Open Secrets database to find out how your elected officials are funded by lobbying groups.

Raising Elijah: Protecting Our Children in an Age of Environmental Crisis

Plastic-Free: How I Kicked the Plastic Habit and How You Can Too

Smart Mama’s Green Guide: Simple Steps to Reduce Your Child’s Toxic Chemical Exposure

Super Natural Home: Improve Your Health, Home, and Planet–One Room at a Time

The Newman’s Own Organics Guide to a Good Life: Simple Measures That Benefit You and the Place You Live

Slow Death by Rubber Duck: The Secret Danger of Everyday Things

Ecological Intelligence: The Hidden Impacts of What We Buy

Unacceptable Levels

Horse Boy: Because Autism Pushes Past Definitions

autism changing definition of normal, autism gifts,

We live in a time when limited definitions and restrictive boundaries no longer apply.

For example, autism.

People with autism themselves are changing what it means to be “normal.” The wild artist, the radical theorist, the creative scientist have long been held at arm’s length from the rest of us. So have many others who push the boundaries.

Amanda Baggs,  who doesn’t speak aloud but does speak through her keyboard, says that autism is a “constant conversation” with one’s surroundings. Ms. Baggs also actively communicates with a network of people around the world through her articles and forum posts. Videos she’s made have been viewed over a million times. Her voice makes a difference.

Which brings me to a powerful new documentary, The Horse Boy (and companion book The Horse Boy: A Memoir of Healing).

It shows the parents of five-year-old Rowan dealing with his tantrums, incontinence and most upsetting to them, their son’s distance. The mother, a psychology professor and the father, a human rights advocate who works with indigenous people around the world, apply diets, therapies, supplements and remarkable patience. Rowan’s screaming outbursts isolate the family. The couple, once world travelers, can barely manage a trip to a nearby park.

Although the father is a life-long equestrian, he keeps his unpredictable son away from horses. But one day Rowan runs to the next door neighbor’s horse. There an old mare reaches her head down and nuzzles the child as if he were her colt. Instinctively the father puts his son on the horse’s back. Rowan relaxes, lies down and talks easily.

A brief experience with a shamanistic healing ceremony that seems to be beneficial stirs Rowan’s parents to wonder where in the world they might find help for their son that pairs horses with shamanism. They end up going all the way to Mongolia.

There they don’t find miracles. But the journey, the horseback riding, the shamanic healing and the wide open landscape precipitates something beyond their understanding. Something happens that has to do with the mystery of autism itself. Although Rowan’s tantrums don’t go away, he also laughs, plays with other children, talks freely and becomes toilet trained. These improvements persist.

Autism is, whatever your perspective, now part of the human experience.  According to some studies, the incidence has risen to epidemic proportions of one in every 110 children. That’s a 50% increase from 1994. Other studies say the incidence may be a great deal higher.

This has been linked to heavy metals  such as mercury and aluminum exposure, to inflammatory syndrome affecting the gut, to a whole range of interrelated environmental factors which may disproportionately affect people with specific genetic or epigenic factors.

autism evolution, autism rights

A friend with two sons whose behavior puts them at the low functioning end of the autism spectrum says her boys, with their overt preference for screen-based technology, make her wonder if we’re pushing the envelope of evolution. “This is what more of our next generations will act like,” she tells me. “I’m not saying it’s good or bad. It’s where our choices have led us.”

 

Rowan’s father said a prayer before a wind-swept shine in Mongolia for all people touched in any way by autism. He asked that it be understood. He asked that the unknown gifts of autism be revealed.

May it be so.

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image titled “Autistic” courtesy of Tyora

image titled “People Are Not Puzzles” courtesty of hgmuffin_stuff