The
arc of scientific discovery is long and bends slowly toward progress.
Before “science,” the best physicians in England examined
King George III’s poop and urine and blistered his back with
heated cups. They
tried strait
jackets, arsenic-containing drugs, and soaking his feet in water and
vinegar. Some of his
doctors thought his
illness resulted from wearing wet socks, eating peas, or
“flying gout,” which flew
to
his brain from his painful feet. The King was
psychotic,
maybe from Porphyria; more likely, he had bipolar disorder and later
dementia, and the battle for his
mind was
crude, frightening, and finally ridiculous.
We
look back to the previous generations and wonder how they survived
bleeding, animal dung ointments, or cannibal cures. Of course, many
didn't. And our children and grandchildren will look back at us,
shaking their heads at the horror of our ways. Things do change, but
the increments are sometimes too small for us to notice. The strength
of the scientific process is that people who have different ideas do
experiments, transcend prior beliefs, and build a foundation of
facts. And voila, we've progressed from poop examination to brain
surgery. And, if science is allowed to follow this proven path,
imagine what physicians practicing 250 years in the future will think
about brain surgery.
The
problem is there are lots of people who no longer believe in science.
My
family learned this thirty-three years ago when our son was diagnosed
with autism. Our love for him is as natural as breathing or dreaming,
although we no longer dream of a time when he won't have autism. And
that's okay. On most days, his happiness level hovers around an eight
out of ten, and, of course, I'm happy he's happy. He is solidly
built, with an open expression, and when he laughs, which is often,
you can’t help but laugh along with him. His dark humor makes
him good company. He is perceptive. When he was
five, he
was immediately aware that his grandmother, whom he visited twice a
year, had painted her kitchen a different shade of white. He is a
thinker. At six, he had his own theory about autism: his two younger
blue-eyed brothers didn’t have it, so his brown eyes must have
been responsible. He is a hard worker and makes sure
travel plans, minor illnesses, and major snowstorms don’t
interfere with his job as a courtesy clerk at a neighborhood grocery
store.
The
autism spectrum is expansive. Dr. Stephen Shore, an autism advocate
who is on the spectrum, once said, “When you meet someone with
autism, you’ve met one person with autism.” Some on the
autism spectrum, because of an accident of birth, a complicated
interplay between genes and the environment, never utter a word,
never learn to smile, never lift their eyes to another’s face
or lock with another’s gaze. And, while our son sometimes talks
when he shouldn’t—how he really feels about birthday
gifts, unpopular relatives, and a movie while still in the middle of
the movie—for some with autism, communication with words or
gestures is not possible or desired. Sometimes, our lives are not
what we deserve but what is given, and we become what we are made to
be.
When
he was diagnosed, our world was rearranged. I changed jobs, hoping to
bend science a little faster in autism research. Over the years,
progress has been slow, one foot in front of another and then
another, plodding and cautious. Yes, there have been advances, but
also wild detours, like when Google Maps, because of faulty
information, takes you to a dead end or, worse, off a cliff.
In
the 1940s, children with autism were lobotomized for “living in
fantasy worlds.” Clearly, not all brain surgery represents
progress. If our son had been born in the 1960s, when autism was
thought to be a kind of schizophrenia, I would have been charged with
bad mothering. The theory of “refrigerator mothers,” as
these women were labeled, emerged from a sort of pseudoscience
confirmed by the general misogynist basis of the Freudian
psychoanalytic idea in which the mother, alone, was viewed as the
source of harm. These fraudulent claims injured mothers terribly and
surely entered their souls. Mothers who’d given as much as any
mother could give in their heartbreaking and endless maternal tasks
were crushed and shamed for years. You do not tell a woman who is
already distressed by her child’s challenges and suffering that
it is her fault. But that is just what psychiatrists did well into
the 1970s.
While
environmental, genetic, and biological causes of autism have been
proposed, a complete understanding of its origin is fragmentary. In
that void, disinformation has rushed in like toxic
waste. So,
without a good deal of skepticism, when we go online, instead of
accessing the truth, we
access their truth.
Or the information superhighway takes us faster and farther in the
direction we are already headed, confirming our preconceived notions
and bad ideas. Emerson recognized that humans are
“fickle
creatures and easily misled,” anticipating, perhaps,
confirmation bias, motivated reasoning, and social media
algorithms. He provided a warning, "Most men (and
women) have bound their eyes with one or another handkerchief and
attached themselves to…communities of opinion."
For
parents, an autism diagnosis feels like being run over by a truck.
And then, it feels like being run over again when the truck, driven
by deluded professionals and hucksters, backs up over you. In 1992,
when our son was diagnosed, the medical community had moved on from
Freudian pseudoscience. In its place, a strident, populist,
antiscientific movement against vaccinations
emerged. So-called
“autism experts” online, some with credentials, some with
a grudge, and some hoping to make a few bucks lectured me, confused
me, bossed me about, and told me to yank out my mercury dental
fillings, especially if I expected to have more children. Since our
son clearly had autism before his two-year measles, mumps, and
rubella (MMR) vaccination, we wondered how the mercury-based
preservative in thimerosal caused his autism. There was a response to
that, too, “Vaccines made his autism worse.” If you
believe mercury causes autism, chelation is the next step. The next
step after that was death for some children, when self-deceived
practitioners “excised” heavy metal from their vulnerable
bodies, like ridding them of evil spirits.
You
may say, “Who would believe such a crazy thing?” It takes
some effort. In Wonderland, Alice said, “There’s no use
trying. One can’t believe impossible things.”
“I
daresay you haven’t had much practice,” said the Queen.
"When I was your age, I always did it for half an hour a day.
Why, sometimes, I've believed as many as six impossible things before
breakfast.”
In
Autism-land, we were encouraged to do the same, ignoring volumes of
evidence in favor of flashes that meet the eye and hunches that seize
the gut. A magic potion was promoted. Unlike the
shimmering blue one Alice drank, tasting of “cherry tart,
custard, pineapple, roast turkey, toffee, and hot buttered toast,”
this brew tasted like vitamins and was about $800 a month. We were
told to try Facilitated Communication, a kind of Ouija Board that
made it possible for non-verbal children to spell out their innermost
thoughts, compose poetry, and sometimes accuse innocent parents,
caregivers, and teachers of sexual abuse, always with the help of a
“facilitator” blind to their own unconscious demons. Some
autism experts swore by restricted diets. But if a child with autism
eats only six white foods and the prescribed diet eliminates three of
those foods, one of which is dairy, without medical supervision, some
kids end up with fragile bones and fractures.
For
$2000, our son could listen to filtered and modulated music. Auditory
Integration Therapy (AIT) claimed to provide “very positive
results for dyslexia and autism” and cure depression. Somehow,
this made me very depressed. And angry. Kids with sound sensitivities
so extreme that even glimpsing a Hoover sends them running into
another room screaming often found the prescribed pitches painful. If
weird music failed to "fix" our son, we could move on to
hyperbaric oxygen chambers, which promised to correct the “low
oxygen levels and inflammation” in his brain. The number of
sessions needed would vary depending on our ability to pay for them.
A research colleague told me, “The only way a hyperbaric oxygen
chamber will help your son is if he gets applied behavior treatment
while in the chamber.”
Because
the media rewards outrage and outlandishness, unfounded and weird
claims are given equal billing with careful research. And, once an
unproven idea is spoken and cultivated, it takes on a life of its
own. When fraudulent claims echo through the chambers of social
media, they become contagious. In addition to pseudoscience,
astonishing recoveries online prompted desperate parents to inject
their children with blood cells and pour raw camel milk into their
gluten-free cereal. And, on days when our son was not happy, and I
wondered if he ever would be, I would surely have given him a snake
oil-infused raw camel milkshake if I could only believe. But I
couldn’t.
The
easiest dollar a scammer ever makes is selling miraculous remedies to
distraught parents. Sometimes, I tried reasoning with families
burning through their savings or taking out a second mortgage to pay
for yet another newfangled way to rescue their child from autism.
Sure, there was no evidence, but the testimonials were
terrific. I’d
look at them with an expression of solidarity and concern and say,
“You know, if there were a cure for autism, Blue Cross would
definitely cover it.” They would rearrange their bottoms in
their seats and glance at me apologetically, helpless that they
couldn’t do even more for their perfect children. And really,
you can’t make people listen.
It’s
still possible to access all these kooky treatments, but their
popularity is waning. An avalanche of recent
research has
undermined bogus claims. It cost a fortune and took years, but it had
to be done. Erroneous assumptions can persist for a long time, as
King George’s physicians proved. After 7000 years, you'd think
someone would have concluded that bleeding debilitated patients, some
at death's door, was a bad idea. However, King George’s doctors
clung to this theory dating back to Hippocrates, which proposed that
imbalances in one of the four key humors—blood, yellow bile,
black bile, and phlegm—in the human body were responsible for
physical and mental illnesses. But bad ideas are not humorous.
Now
that parents are no longer advised to lobotomize their children as
there were in the 1940s, have overcome the lingering shame of
“refrigerator motherhood” expounded in the 1960s, and are
emerging from the dangerous quackery of 1990s and beyond, there is a
growing recognition that pharmaceutical companies have complicated
motivations as well. A required course, Fraud, Waste,
and
Abuse, at the university where I’m employed asked
the
following question, “If a pharmaceutical company offers to
compensate you for prescribing their products, you should: A. Accept,
as this is a standard way to earn extra money. B. Decline. Federal
healthcare programs cannot reward business referrals for
reimbursement. C. Report the offer to Compliance Services, Office of
General Counsel, or Risk Management. D. Both B and
C.” The
biggest lie we tell ourselves is that we aren’t influenced by
“big money,” which we merely see as “effective
advertising.”
I
didn't work for Big Pharma for twenty years, but with them,
coordinating clinical trials at a non-profit autism research center.
Bringing a drug to the market requires a Herculean effort and a
king’s ransom. In 2022, the average cost of developing a new
drug was $2.3 billion over ten to fifteen years. The agency I
worked for was a clinical site for one of the sixteen
different
secretin trials. This pancreatic hormone, which sounds like it could
be classified as one of the body’s liquid humors, gained
notoriety in 1998 when a mother championed its effectiveness on two
national television shows. Anecdotal reports claimed that secretin
led to improvements in the behavior of autistic children because
problems with the stomach and digestion interfered with their ability
to learn. If digestive issues were managed, autistic children were
"freed up' to focus on developing skills. But we didn't need
sixteen clinical trials to disprove this theory, and the word
secretin makes me think of a body fluid best not discussed in
public.
Pharmaceutical
companies will sometimes persist in conducting clinical trials with
the same investigational medication despite all odds. There is a
reason for this. When companies seek FDA approval to market a new
drug, they submit all clinical trials they have sponsored to the
agency. If two of those trials demonstrate that the drug is more
effective than a placebo, which already has a seventy percent chance
of showing improvement, the drug is generally approved. Companies may
sponsor as many trials as they like. All they need are two positive
ones. Drug companies make sure that positive drug trials are
published in medical journals and that healthcare providers know
about them. In contrast, negative drug trials usually languish unseen
within the FDA, which regards them as proprietary and, therefore,
confidential. Not surprisingly, this practice significantly biases
the medical literature, medical education, and treatment decisions.
People
with autism do live better “through chemistry," as the
Dupont advertising slogan claims. While there are no drugs that treat
the social and communication challenges, medications successfully
treat many co-occurring conditions. My son takes a “drug
cocktail” of two medications to treat generalized anxiety so he
doesn’t “endlessly worry about everything,” which
is what a cocktail is supposed to do. When he was an adolescent and
taking public transportation across town, medication for his ADHD
helped him remember to get off at the correct bus
stop.
The
scientific community has now determined that applied behavior
analysis, or ABA, is the mainstay for autism treatment. ABA has
passed tests on its usefulness, quality, and effectiveness and has
been endorsed by the US Surgeon General and the American
Psychological Association. Based on the science of learning and
behavior, this strategy works on husbands, in-laws, co-workers, and
dogs, as well as people with autism. Positive reinforcement is one of
the main strategies used in ABA. Very simply, when a behavior is
followed by something that is valued, a person is more likely to
repeat that behavior. For example, my dog and husband have trained
one another. Our collie-poodle sits patiently in front of my husband
at every meal. For a doggy grin, he rewards her with a stretchy,
sunshiny bite of his cheese sandwich. If she stares at him long
enough with her penny-colored begging eyes, he slips her a piece of
savory-sweet chicken satay dipped in a velvety peanut
sauce. No,
we can’t make people listen, but whether we intend to or not,
we prompt, discourage, incentivize, guide, embarrass, comfort,
indoctrinate, evoke, instruct, and shape one another’s behavior
every day.
When
our son needed more experience chatting comfortably and appropriately
with his middle-school friends, his speech therapist arranged for him
to eat lunch with a group of kind adolescent boys, which, believe it
or not, is not an oxymoron. These boys, like most teenagers, lived on
the boundary between hubris and the abyss, and this lunch-bunch
social club provided a bit of healthy structure to their lives, too.
We discovered that even fourteen-year-olds can bask in the ecstatic
glow of altruism. We praised and thanked the therapist, and she
received kudos from the school administration. My reward? Our son no
longer ate alone.
Our
homework was to watch The Simpsons and
talk about
recent episodes at the dinner table so our son would learn
conversational starters at school. That, in itself, was rewarding. I
was also recruited by the speech therapist to provide more tangible
perks to the lunch group. Once a week, I would go to a slightly
malodorous classroom at the middle school at noon and meet with my
son and his chatting buddies. Backpacks would drop, and chairs would
scrape on the linoleum floor while I set out litters of soda and
greasy pepperoni pizza. While the kids ate slice after slice of the
Super Supreme, l would suggest a couple of games. Two Truths and a
Lie was a favorite. In this game, each student tried to trick
everyone with three statements about themselves. Two of them must be
true, and the third statement is a complete lie. After the reveals,
sometimes the kids groaned, sometimes soda shot out of their noses,
and sometimes, they would fall over laughing. We practiced this game
at home, too, because deception, the ability to understand and
manipulate false beliefs, is difficult for people with autism.
Really,
understanding that people lie is an essential lesson for everyone. We
caress the touch screens on our electronic devices and, with a few
swipes, access one truth and two lies, sometimes three truths and one
big lie, and sometimes, just alternative facts. Rigorous skepticism,
an ear primed to hear false notes, and the unflappable skill of
cache-emptying on our electronic devices are evolutionary
imperatives. When it comes to caring for our children, who has the
energy, money, or a single moment to waste on bad ideas?
Sharman
Ober-Reynolds was born in LA and completed a master’s in fine
arts at Arizona State University. She worked as a FNP in autism
research and is primary author of The FRIEND Program for Creating
Supportive Peer Networks for Students with Social Challenges,
including Autism. In 2023, Sharman was the first-place recipient of
the Olive Woolley Bert Awards and has published creative non-fiction
in bioStories and Adelaide Literary Magazine. Sharman now lives and
writes in an old house in Salt Lake City with her family and
Cadoodle.hey
become contagious. In addition to pseudoscience,
astonishing recoveries online prompted desperate parents to inject
their children with blood cells and pour raw camel milk into their
gluten-free cereal. And, on days when our son was not happy, and I
wondered if he ever would be, I would surely have given him a snake
oil-infused raw camel milkshake if I could only believe. But I
couldn’t.
The
easiest dollar a scammer ever makes is selling miraculous remedies to
distraught parents. Sometimes, I tried reasoning with families
burning through their savings or taking out a second mortgage to pay
for yet another newfangled way to rescue their child from autism.
Sure, there was no evidence, but the testimonials were
terrific. I’d
look at them with an expression of solidarity and concern and say,
“You know, if there were a cure for autism, Blue Cross would
definitely cover it.” They would rearrange their bottoms in
their seats and glance at me apologetically, helpless that they
couldn’t do even more for their perfect children. And really,
you can’t make people listen.
It’s
still possible to access all these kooky treatments, but their
popularity is waning. An avalanche of recent
research has
undermined bogus claims. It cost a fortune and took years, but it had
to be done. Erroneous assumptions can persist for a long time, as
King George’s physicians proved. After 7000 years, you'd think
someone would have concluded that bleeding debilitated patients, some
at death's door, was a bad idea. However, King George’s doctors
clung to this theory dating back to Hippocrates, which proposed that
imbalances in one of the four key humors—blood, yellow bile,
black bile, and phlegm—in the human body were responsible for
physical and mental illnesses. But bad ideas are not humorous.
Now
that parents are no longer advised to lobotomize their children as
there were in the 1940s, have overcome the lingering shame of
“refrigerator motherhood” expounded in the 1960s, and are
emerging from the dangerous quackery of 1990s and beyond, there is a
growing recognition that pharmaceutical companies have complicated
motivations as well. A required course, Fraud, Waste,
and
Abuse, at the university where I’m employed asked
the
following question, “If a pharmaceutical company offers to
compensate you for prescribing their products, you should: A. Accept,
as this is a standard way to earn extra money. B. Decline. Federal
healthcare programs cannot reward business referrals for
reimbursement. C. Report the offer to Compliance Services, Office of
General Counsel, or Risk Management. D. Both B and
C.” The
biggest lie we tell ourselves is that we aren’t influenced by
“big money,” which we merely see as “effective
advertising.”
I
didn't work for Big Pharma for twenty years, but with them,
coordinating clinical trials at a non-profit autism research center.
Bringing a drug to the market requires a Herculean effort and a
king’s ransom. In 2022, the average cost of developing a new
drug was $2.3 billion over ten to fifteen years. The agency I
worked for was a clinical site for one of the sixteen
different
secretin trials. This pancreatic hormone, which sounds like it could
be classified as one of the body’s liquid humors, gained
notoriety in 1998 when a mother championed its effectiveness on two
national television shows. Anecdotal reports claimed that secretin
led to improvements in the behavior of autistic children because
problems with the stomach and digestion interfered with their ability
to learn. If digestive issues were managed, autistic children were
"freed up' to focus on developing skills. But we didn't need
sixteen clinical trials to disprove this theory, and the word
secretin makes me think of a body fluid best not discussed in
public.
Pharmaceutical
companies will sometimes persist in conducting clinical trials with
the same investigational medication despite all odds. There is a
reason for this. When companies seek FDA approval to market a new
drug, they submit all clinical trials they have sponsored to the
agency. If two of those trials demonstrate that the drug is more
effective than a placebo, which already has a seventy percent chance
of showing improvement, the drug is generally approved. Companies may
sponsor as many trials as they like. All they need are two positive
ones. Drug companies make sure that positive drug trials are
published in medical journals and that healthcare providers know
about them. In contrast, negative drug trials usually languish unseen
within the FDA, which regards them as proprietary and, therefore,
confidential. Not surprisingly, this practice significantly biases
the medical literature, medical education, and treatment decisions.
People
with autism do live better “through chemistry," as the
Dupont advertising slogan claims. While there are no drugs that treat
the social and communication challenges, medications successfully
treat many co-occurring conditions. My son takes a “drug
cocktail” of two medications to treat generalized anxiety so he
doesn’t “endlessly worry about everything,” which
is what a cocktail is supposed to do. When he was an adolescent and
taking public transportation across town, medication for his ADHD
helped him remember to get off at the correct bus
stop.
The
scientific community has now determined that applied behavior
analysis, or ABA, is the mainstay for autism treatment. ABA has
passed tests on its usefulness, quality, and effectiveness and has
been endorsed by the US Surgeon General and the American
Psychological Association. Based on the science of learning and
behavior, this strategy works on husbands, in-laws, co-workers, and
dogs, as well as people with autism. Positive reinforcement is one of
the main strategies used in ABA. Very simply, when a behavior is
followed by something that is valued, a person is more likely to
repeat that behavior. For example, my dog and husband have trained
one another. Our collie-poodle sits patiently in front of my husband
at every meal. For a doggy grin, he rewards her with a stretchy,
sunshiny bite of his cheese sandwich. If she stares at him long
enough with her penny-colored begging eyes, he slips her a piece of
savory-sweet chicken satay dipped in a velvety peanut
sauce. No,
we can’t make people listen, but whether we intend to or not,
we prompt, discourage, incentivize, guide, embarrass, comfort,
indoctrinate, evoke, instruct, and shape one another’s behavior
every day.
When
our son needed more experience chatting comfortably and appropriately
with his middle-school friends, his speech therapist arranged for him
to eat lunch with a group of kind adolescent boys, which, believe it
or not, is not an oxymoron. These boys, like most teenagers, lived on
the boundary between hubris and the abyss, and this lunch-bunch
social club provided a bit of healthy structure to their lives, too.
We discovered that even fourteen-year-olds can bask in the ecstatic
glow of altruism. We praised and thanked the therapist, and she
received kudos from the school administration. My reward? Our son no
longer ate alone.
Our
homework was to watch The Simpsons and
talk about
recent episodes at the dinner table so our son would learn
conversational starters at school. That, in itself, was rewarding. I
was also recruited by the speech therapist to provide more tangible
perks to the lunch group. Once a week, I would go to a slightly
malodorous classroom at the middle school at noon and meet with my
son and his chatting buddies. Backpacks would drop, and chairs would
scrape on the linoleum floor while I set out litters of soda and
greasy pepperoni pizza. While the kids ate slice after slice of the
Super Supreme, l would suggest a couple of games. Two Truths and a
Lie was a favorite. In this game, each student tried to trick
everyone with three statements about themselves. Two of them must be
true, and the third statement is a complete lie. After the reveals,
sometimes the kids groaned, sometimes soda shot out of their noses,
and sometimes, they would fall over laughing. We practiced this game
at home, too, because deception, the ability to understand and
manipulate false beliefs, is difficult for people with autism.
Really,
understanding that people lie is an essential lesson for everyone. We
caress the touch screens on our electronic devices and, with a few
swipes, access one truth and two lies, sometimes three truths and one
big lie, and sometimes, just alternative facts. Rigorous skepticism,
an ear primed to hear false notes, and the unflappable skill of
cache-emptying on our electronic devices are evolutionary
imperatives. When it comes to caring for our children, who has the
energy, money, or a single moment to waste on bad ideas?
Sharman
Ober-Reynolds was born in LA and completed a master’s in fine
arts at Arizona State University. She worked as a FNP in autism
research and is primary author of The FRIEND Program for Creating
Supportive Peer Networks for Students with Social Challenges,
including Autism. In 2023, Sharman was the first-place recipient of
the Olive Woolley Bert Awards and has published creative non-fiction
in bioStories and Adelaide Literary Magazine. Sharman now lives and
writes in an old house in Salt Lake City with her family and
Cadoodle.
to eat lunch with a group of kind adolescent boys, which, believe it
or not, is not an oxymoron. These boys, like most teenagers, lived on
the boundary between hubris and the abyss, and this lunch-bunch
social club provided a bit of healthy structure to their lives, too.
We discovered that even fourteen-year-olds can bask in the ecstatic
glow of altruism. We praised and thanked the therapist, and she
received kudos from the school administration. My reward? Our son no
longer ate alone.
Our
homework was to watch The Simpsons and
talk about
recent episodes at the dinner table so our son would learn
conversational starters at school. That, in itself, was rewarding. I
was also recruited by the speech therapist to provide more tangible
perks to the lunch group. Once a week, I would go to a slightly
malodorous classroom at the middle school at noon and meet with my
son and his chatting buddies. Backpacks would drop, and chairs would
scrape on the linoleum floor while I set out litters of soda and
greasy pepperoni pizza. While the kids ate slice after slice of the
Super Supreme, l would suggest a couple of games. Two Truths and a
Lie was a favorite. In this game, each student tried to trick
everyone with three statements about themselves. Two of them must be
true, and the third statement is a complete lie. After the reveals,
sometimes the kids groaned, sometimes soda shot out of their noses,
and sometimes, they would fall over laughing. We practiced this game
at home, too, because deception, the ability to understand and
manipulate false beliefs, is difficult for people with autism.
Really,
understanding that people lie is an essential lesson for everyone. We
caress the touch screens on our electronic devices and, with a few
swipes, access one truth and two lies, sometimes three truths and one
big lie, and sometimes, just alternative facts. Rigorous skepticism,
an ear primed to hear false notes, and the unflappable skill of
cache-emptying on our electronic devices are evolutionary
imperatives. When it comes to caring for our children, who has the
energy, money, or a single moment to waste on bad ideas?
Sharman
Ober-Reynolds was born in LA and completed a master’s in fine
arts at Arizona State University. She worked as a FNP in autism
research and is primary author of The FRIEND Program for Creating
Supportive Peer Networks for Students with Social Challenges,
including Autism. In 2023, Sharman was the first-place recipient of
the Olive Woolley Bert Awards and has published creative non-fiction
in bioStories and Adelaide Literary Magazine. Sharman now lives and
writes in an old house in Salt Lake City with her family and
Cadoodle.