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We Can’t Move Forward When We’re Standing Still…

It has been almost thirteen years since the late Bernie Rimland wrote the foreword in my book, Confronting Autism: The Aurora on the Dark Side of Venus.  Thirteen years have come and gone for our children on the autism spectrum, who were so young at that time.  Thirteen years have come and gone for parents who, at that time, had so much hope, that a cause and a cure was in reach and, that the political climate of the medical, psychological, educational and government communities would find common ground on which to stand – to come together to improve the lives and the futures of children with autism and their families.

Parents of autism spectrum children used to find one another in chat rooms, to talk, to commiserate, to share research and to share ideas.  Parents were parents’ best advocates.  Parents were their children’s best advocates.  Parents still are the best source of advocacy for one another and their children.  Today, we meet on Facebook, at conferences and in community groups. But, by and large, not much has changed in thirteen years – except the rate of autism, which continues to climb.  

For the next month, I will be featuring various chapters from my book on this blog page, not to profile my book, but to underscore just how little has changed for parents of children with autism.  I hope you will share the link to my blog on your Facebook pages and with your friends.  Surely, since the days of Bernie Rimland and the Autism Research Institute, autism organizations have become larger, more corporate, better funded and even more political.  Parents are being asked – possibly more than ever – to take part in fund raising and awareness campaigns, but the practical, outstretched hand of respite, financial support, educational intervention and medical direction is still obscure and the voice of hope, help and answers can still barely be heard.

We see the headlines about new insurance coverage.  Who among us actually reaps that benefit on a daily basis?  Very few, to be sure. We continue to see the data that bears out the best, most effective intensive early educational interventions.  Who among us actually receives these interventions, proactively, without a fight to the blood in an I.E.P. meeting?

I am one of the luckier parents, without a doubt.  Parker is now 19-years-old, bright, independent, loving and intellectually engaging.  In my heart, however, there is not a day that goes by when I do not think about and pray for some of my dearest friends in this community. As our children reach adulthood, it is unconscionable that there is still a complete dearth of safe facilities and support networks for our now-grown-up children.  

Come along and read this 13-year-old tale… as I resurrect my book from the archives.   I would like to recall where we once were, and how little we have traveled since.  You may also find my free e-book in PDF format on the home page of this blog in its entirety, if you prefer to browse through it at your leisure.  When I wrote this, it was a hopeful, forward-seeking message.  As I read it now and look back, it becomes a reminder that we are all still shouting, and so few are listening.  We are still on Venus, in retrograde motion, and we want more than Hollywood stars on red carpets, buildings lighted up in bright blue, walk-a-thons that support researchers who look down their noses at a very educated and intelligent parent community, or educational and medical treatment modalities that financially fracture families who are already emotionally and relationally debilitated by the rigors and the routines of life with autism.

Finally, I would like to say this:  this condition called autism, that has brought so many of us to our knees, has also shown so many of us that we are strong.  There is an almost-spiritual quality to the way in which it sets aside our differences as parents, and the way it enjoins us, still, in a common cause that transcends political, ideological, religious, socioeconomic, cultural and other boundaries. We have been on the dark side of Venus for far too long.

Confronting Autism:  The Aurora on The Dark Side of Venus

Foreword

Victoria Beck’s book is a treasure – the work of an inspired, and inspiring, highly articulate and remarkably insightful writer. What she says – and says so well – has needed saying for a long time. I fervently hope, and fully expect, that fellow parents of autistic children will pay close heed to Victoria’s heartfelt message.

It has been said that the parents of autistic children are the most severely oppressed minority group in America. As a fellow parent (my son Mark is 37 years older than Victoria’s son Parker) I have for nearly four decades been urging parents to reject the conventional views that little can be done to help autistic children, and that parents must passively accept the harmful drugs that are the mainstay of the medical profession’s approach to autism. I am truly delighted that Victoria is offering parents similar advice and offering them, far more importantly, a practical, step-by-step, easy-to-implement “battle plan” they can use to cut through the red tape, confusion, and politics that stand between their children and real help. Her detailed advice is invaluable – a “crash course” of practical information that most parents spend years learning. Equally important, however, is her inspiring message: that parents possess wisdom and competence, and that they have the right – in fact the obligation – to challenge the fatalistic view of autism held by so many professionals.

Victoria and her husband Gary rejected that view, and, as a result, their son has made remarkable progress toward a normal life. Victoria’s story about how they single-handedly discovered the benefits of secretin, and the challenges they faced from the medical community as a result, may seem more like a TV melodrama than a real-life story, but it is all very real. So is the story of how they persevered and shared their discovery with other parents.

The discovery of the effects of secretin on autism plays a major role in this book. During the past several years I have heard from hundreds of families and physicians, including physicians who are themselves parents of autistic children, about the remarkable effects of secretin upon many autistic children. I have encountered no treatment modality, in my 40 years of experience, which is nearly as promising as secretin. We are just at the beginning of learning what the true potential of this hormone may be, not only in the treatment of autism, but, I am confident, in the treatment of a large number of other neurological and metabolic disorders.

We have come a long way – but not nearly far enough – from the day in 1958 when my wife and I, having ourselves diagnosed our severely affected 2-year-old son Mark as being autistic, learned to our horror and dismay that every textbook on psychiatry proclaimed autism to be a “psychogenic” disorder, a mental illness caused by parents who supposedly harbored feelings of hostility toward their child, who was assumed to be biologically normal. This pernicious idea, which was supported by not one shred of scientific evidence, was not presented as a mere theory, or as a hypothesis, but as an unquestioned fact. My book Infantile Autism, published in 1964, is credited with destroying that evil myth and establishing autism as a biological disorder. But that was only part of the problem.

After completing Infantile Autism, I began a search for effective treatments. I learned about behavior modification (now called “ABA”) from Ivar Lovaas in late 1964. The autism professionals scoffed. Ignoring the fact that it obviously worked, they rejected the idea that a technique that was used to train dogs and seals could help autistic children. They would become mere “robots,” it was argued. I responded by founding, in 1965, the Autism Society of America, a parent group strong enough to insist that the children receive structured special education, and not just drugs and “play therapy.”

In the mid 1960’s I also learned about treatment with high-dose vitamin B6 and magnesium. Between 1966 and 1996, 18 studies were published by researchers in 6 countries, showing the B6/magnesium treatment to be far better and safer than any of the available drugs. Eleven of the studies were double-blind, placebo-controlled experiments. Yet the professionals still scoffed, ignoring the evidence and deceiving the parents by claiming there were no scientific studies, or that there were studies that showed the treatment to be useless or harmful. To this day they continue to tell parents the same nonsense.

All the while some of these autism professionals were administering drugs that were harmful, conducting research aimed at enhancing their professional status rather than helping the children, and ignoring the emerging research on unpopular or politically incorrect topics, such as vaccine damage and the effects of dietary gluten and casein on autism.

But there were – and are – some excellent, open-minded physicians and researchers really interested in helping autistic children. In January, 1995 I convened our first Defeat Autism Now! (DAN!) Conference in Dallas. The attendees were 30 hand-picked physicians and researchers from the US and Europe. Things have moved quickly since then.

Victoria Beck was a featured speaker at The Autism Research Institute’s 4th Annual Defeat Autism Now! Conference held in Cherry Hill, New Jersey in early October, 1998. Her talk was the first public presentation on the autism/secretin connection. As reported in our newsletter, The Autism Research Review International:

The highlight of the conference was the impassioned address by parent Victoria Beck, whose account of her uphill struggle to establish the autism-secretin connection brought a standing ovation from the crowd of 1,200.

The best, most overwhelming, most articulate talk I’ve ever heard,” said Maureen McDonnell, R.N., coordinator of the conference. Noting that there was hardly a dry eye in the house, McDonnell added, “the next time she speaks, I’ll bring boxes of tissues to hand out to the audience.

Victoria’s book, however, is not just about secretin – which, as she explains, is just one key to the puzzle of autism, and will not be part of the answer for every autistic child. Instead, she charts a path to help parents of autistic children evaluate the various medical and educational options available. If you are the parent of an autistic child, and the deluge of conflicting treatment information has you feeling overwhelmed and confused, Victoria’s book will help you to efficiently and assertively plan the best course of action to maximize your child’s potential.

In addition, you will find strength and courage in the story of the Beck’s successful battle against seemingly overwhelming odds. And successful it has been.

Parker Beck, the first child to respond to secretin, is doing very well. Several months ago, while the Becks were vacationing in San Diego, we invited them to attend a dinner meeting of the Board of Directors of the Autism Research Institute. The restaurant was able to find us a small private dining room, with a separate table where charming 6-year-old Parker and his delightful 8-year-old sister Jordan could be served their dinner while they worked on their coloring books. A few feet away, we adults dined and conducted our Board meeting. After about 20 minutes, little Parker got up from his chair and came over to the adult’s table, where he handed one note to his mother Victoria and another to his father Gary. Victoria and Gary each unfolded their notes and broke into pleased smiles. Parker had handed each of them a carefully folded drawing on which was printed very carefully and neatly the words “I love you mommy” and “I love you daddy.”

I will never forget that incident. It made worthwhile all the years of hard work and all the sacrifice endured by Gary and Victoria, and the others of us at the table. Victoria’s brilliant and dedicated efforts to help other parents will, I’m sure, result in equally heartening scenes being enacted in future years, in many thousand of homes worldwide.

Bernard Rimland, Ph.D.
The Autism Research Institute
San Diego, CA
September, 1999

Prologue

The exact date escapes me, but I remember that first day my sister got on the phone with me and said, “Brian, there’s something wrong with Parker.”

Victoria and I had always been very close. Through the years, in our darkest moments, we had consoled each other and guided one another through those various life crises in which people invariably find themselves. It is not currently politically correct, but I have generally found the female of the species to be at least outwardly more emotional than the male. Having said that, when seeking advice from Victoria, I always found her level-headed and emotionally restrained. I had seen her weather a number of difficult challenges with grace, bury both parents at too young an age, and suffer the throes of a colicky first child with patience and understanding.

But I had never heard her voice sound quite like it did that day. I tried to console her, yet I knew that she would not have called me and made that statement unless weeks or months of experience with Parker had progressively convinced her that indeed something was wrong. In this book, Victoria describes autism as being something of a contagion – a contagion of the soul and spirit. I felt the impact of that contagion right there on the phone, in her voice…a cold omen of the future.

An unattached bachelor for a quarter of a century, I thought I had come to know the meaning of the word “alone.” Holidays can be tough, as can extended family picnics when you have no family or children of your own. When problems at work arise, there is no one at home to faithfully support you.

Yet, autism has taught me that I didn’t really know “alone” after all. The disappointment, the shock, the denial, the pain, the frustration, the confusion, the misinformation, the omnipresence of this disease have left whole generations of parents truly alone. Victoria and Gary were two of the strongest and most organized individuals I knew. Their marriage was, by today’s standards, extraordinarily happy and secure, and they were going places. Gary was a hard-driving up-and-comer in the banking industry and Victoria was a devoted full-time mom. She home schooled her first born and was totally dedicated to her children and husband. Within a year of Parker’s disease, their lives were turned upside down. No more normal socializing with friends and family. No more breakable knick-knacks on display in the house. Extra locks on the doors from the inside out. No more restaurants on a hot summer day. No more normal meal times. Being ignored by people who were unwilling to look at autism in the eye. Lack of time. Lack of sleep. Lack of answers. No answers. No help.

They were starkly alone.

Making this situation even worse was the fact that Victoria wasn’t really ever alone, at least not in the physical sense. She could never leave Parker out of her sight. He never seemed to lose energy, he never seemed to sleep or slow down. He had no sense of danger. And you could communicate precious little to establish any sort of control. Oh, and, of course, no convenient babysitters; not for a child with autism.

Alone, yet horribly not alone.

My sister was (and is!) a levelheaded, intelligent, strong woman with a great life partner and yet she was reduced to a crying wreck on some nights by the contagion of autism. Day upon week upon month of this unrelenting and seemingly unforgiving condition took one of the strongest people I have known and reduced her almost to a mere shell. The description, however, does read almost.

Enough of Victoria’s inner strength hung on to drive the pendulum back the other way.

This book is, in part, her story. And though it is, of course, Parker’s story as well, the book truly belongs to the autism community.

It is a book that tells them: you are not alone, or without hope, after all.

Brian James Land
September, 1999                                                            

Chapter One

The Current State of Autism: Astrology for the Modern Culture

“Life can only be understood backwards; but it must be lived forwards.” ~ SØren Kierkegaard

Gary and I met in an astronomy class. We were both finishing our last science elective in college. Neither of us had much interest in the class. As the year and our friendship with each other progressed, both of us realized we were not quite as focused on the subject matter being taught as our fellow stargazers were. Looking back, there is no doubt in my mind that during this study of the heavens, the work of angels was subtly taking place. It had been an over-booked course. The professor had made an exception to the rule by allowing Gary to sign up for the late-night class, and in a jam-packed room, the only available seat was next to me. Fate was a friend that day.

I’d like to think that, at the very least, my astronomy class broadened my understanding of the universe and all its properties. Fact is, most of the course material remains a blur. In retrospect, maybe my attention was ever so slightly distracted by Gary’s dazzling smile or the smell of his cologne (it still is). For sure, now 13 years later, almost all of the technical information about the wonders in space has left my brain. Whenever I look up in the night sky, I don’t think about cosmic rays, supernovae, magnetic fields or quasars. I think about what is clearly in front of my eyes. I think about the stars, plain and simple.

The glorious luster of the stars on a clear night are, at the same time, magnificent and humbling. Magnificent in their brilliance; humbling because they remind us all how much there is waiting to be revealed to us about our universe and how great and elusive the heavens are – even to the finest astronomers and scientists in our world. Indeed, whether one is technically oriented or not, the stars are an important connection to the relatively unexplored existence beyond our planet. For the scientists, the stars hold important clues to the properties of the universe. For more ordinary gazers like me, those stars provide perspective on the world and help to validate the presence of phenomena that is beyond our human understanding.

Years after the two-semester astronomical experience, only one topic remains etched in my brain today. The chapter discussing the planet Venus must have permanently stayed in the recesses of my mind because it was named for the Roman goddess of love, who had paid a personal visit to Gary and me that year. I have since come to realize that, in many ways, those recollections have become a kind of defining point, metaphorically, of our journey into the world of autism with our second child, our son Parker.

Venus (named for the great mother goddess) has been the object of intense interest and scrutiny by astronomers for centuries. Its proximity to our own planet, as well as many of its general characteristics, initially made it seem strikingly similar to Earth. Many of the geological features of Venus are features familiar to Earth. It has mountains, volcanoes, canyons and plains. What scientists have come to learn, however, is that at some point in the history of the universe, Earth and Venus took on different forms.[i]

The clouds that completely shroud Venus are, ironically, what make the planet stand out so obviously in the sky. The clouds around Venus reflect the light from the sun. They also hide the planet from the eye of the telescope, and astronomers have had to develop extraordinary methods for penetrating the clouds of Venus in order to learn more about its properties. Special radar techniques have helped scientists to look beyond the exterior cloud cover and unlock the secrets not previously known. In fact, it wasn’t until 1961, hundreds of years after Galileo’s time, that it was discovered that Venus actually slowly rotates in a direction opposite to that of the other orbital and rotational motions in our solar system. The retrograde rotation of Venus is still not understood. However, in the midst of its mysterious and slow retrograde motion, an interesting phenomenon takes place. As the molecules around the planet move to its dark side, they cool down, combine into new molecules with more energy, and begin to emit light. This creates a spectacular sight around the cloud cover. The phenomenon is known in astronomy as the Aurora on the Dark Side of Venus.[ii]

Children suffering from autism parallel typical children, as Venus parallels Earth. Theirs is a world which, at first glance, seems so close to our own. So near, so similar at first glance, yet so different. Their souls reflect the same light as other children, yet their lives are shrouded in a cloud cover we often cannot penetrate without special techniques. Under the cloud cover, despite their sometimes seemingly mysterious and curious actions, are their magical moments of luminescence, when a word or a connection appears to arise from the darkness. These are the signals which, although sometimes irregular, are undeniable and unmistakable to those of us who love and care about these children. They are the outward signs that let us know that typical children are really there, underneath the cloud cover and within our reach.

There are other parallels between astronomy and autism. Historically, astronomy was largely that which we know today as astrology. Even though it was widely popular in its day, astrology was based on myth and irrational preconceived notions; notions that we readily dismiss now, but that in their day were virtually gospel. Astronomy changed dramatically following medieval times. Its entire premise changed, from being a phenomenon worthy of study solely in sociological and psychological circles, into a subject worthy of rational and methodical science. Had the Renaissance not brought with it pioneers such as Copernicus, Galileo and Newton, we might all believe that the laws and physical properties of the world are determined by Zeus himself. These pioneers changed the way that modern scientists look at the universe. They introduced a new valid truth to us all.[iii]

For many years, autism had suffered from the myth (promulgated by professionals with impressive credentials) that the condition was caused, among other similar and ridiculous things, by heartless and cold “refrigerator” mothers. It took years before parents (and especially mothers) were able to get beyond the guilt heaped upon them by psychoanalysts like Bruno Bettelheim who promoted these preposterous ideas. We may think we have come far since the days of Bettelheim. Relatively speaking, our modern culture hasn’t yet really emerged from the Dark Ages in our view of autism or our approach to exploring it. Much of what is still accepted today, despite evidence to the contrary, is based on the belief that autism is exclusively an incurable psychological disorder, which automatically and forever destines the child affected by it to a second-class life. This cruel myth, creating de-facto second-class juvenile citizens is only exceeded by the third-rate treatment of these same children by many in the educational, psychological, medical and insurance communities.

The rate of autism is increasing dramatically,[iv] and a large group of the children with autism today (arguably, the vast majority of newly diagnosed cases) involve physiological abnormalities. The physiological nature of our children’s challenges is profoundly obvious to those of us who live with our children on a daily basis. Many of our children have severe gastrointestinal problems. Many are grossly deficient in nutritional elements of one kind or another. They often have symptoms of thyroid disorders, poor muscle tone, abnormal neurological and immunological profiles, and problems with visual perception.

Despite these physiological realities, autism continues to be defined and taught in medical school as a behavioral and mental disorder (according to what I have been told by recent medical school graduates). It is usually attached to the word “lifelong,” and the responsibility to find biomedical treatment options is largely left to the child’s parents. Such physiological problems in our children are either assumed by much of traditional medicine to be of no significance (and therefore unworthy of exploration) or determined to be independent of the developmental and behavioral issues at hand.

This view has preserved a premise about autism that is as archaic as medieval astrology. The “experts” have apparently reasoned that the lack of grounded, scientific, peer-reviewed, conclusive evidence pointing to one specific biomedical cause for our children’s illness, by default preserves the traditional definitions of autism despite the fact that no one has ever proven the traditional views, either. There is one huge fatal flaw in their premise. The lack of evidence proving the underlying biomedical cause or causes of autism does not, by its absence, prove that autism is therefore merely behavior or development gone awry. Nor does it prove a purely genetic cause. It is, simply stated, a lack of evidence, or more correctly, evidence ignored and therefore not yet proved.

On the surface, this may seem like a minor issue. Nothing could be further from the truth. Our children will never permanently emerge from the dark ages of autism if we do not do everything within our abilities to change the premise currently accepted by the majority of professionals in the medical and psychological communities. Calling them worthless and pointless, many of these same professionals have ranted vociferously and railed adamantly about the supposedly unproven medical treatments and procedures we as parents have sought and even demanded. Steadfastly they cleave, all the while, to a definition and a premise about autism which has so many holes in its logic it could not stand the test of even the most primitive scientific rigor. Where are the clinical trials, which would be able to factor out biochemical involvement in our children, to isolate it as solely a behavioral or developmental disorder? Where are the control groups to prove, beyond a shred of scientific doubt, that the biochemistry of children with autism is identical to that of the norms? Of course, there are no such studies. Nor are there adequate studies to justify the use of psychoactive drugs or high-dose corticosteroids, which carry a fair share of potential and serious adverse side effects. Yet, these kinds of drugs are prescribed daily to our children without hesitation or reservation. Quite a double standard. So why have we, as a parent community, allowed our children to be defined and pigeonholed in such a hopeless, incomplete way? Why have we, as our children’s most ardent advocates, endured with more than a fair degree of complacency, the attempts to thwart biomedical research and interventions for our autistic children? Why have we as parents not stood up more confidently and not spoken out more assuredly about the “other” side of autism – the physiological side – the reality of which is overwhelming?

Many children have dramatically improved, or recovered completely, after dietary or medical interventions of one kind or another. These children refute the old myths, and provide the basis for intense scientific and medical scrutiny, toward the goal of a cure. But efforts and support to explore even the most obvious territory fall victim to the comfort zones of bygone eras in autism history and to close-minded attitudes within the medical, psychological and educational professions. In addition, often the most sincere and interested professionals and doctors become trapped in a medical/political system which hails prestigious research institutions as the only entities capable of charting medical progress. The observations and input of parents and fine practitioners are discounted as being meaningless and anecdotal at best. Consequently, our children become trapped in retrograde motion, like Venus.

Instead of trying to delve into the biological causes of autism, we have allowed the mainstream educational, medical and psychological communities to convince us to be complacent. We have, in our complacency, accepted the notion that these beautiful creations somehow either have abnormal brain function, the sudden etiology of which is not proven, have consciously chosen this mysterious, cloud-covered existence of their own volition, or worse, have been put there through the fault of irresponsible parents.

We, as parents, have held these children, have loved them, and have watched them fall asleep in our arms. We know their touch, the sound of their laugh, the smell of their skin. We know so much more about their everyday behaviors, symptoms and changes than that which can be examined in a physician’s office or a psychologist’s clinic in an hour or a day. We also know that a bright, functioning, loving, beautiful child is underneath all of the untypical behavior. We recognize the little (but very real) breakthroughs that appear spontaneously or after interventions of one kind or another. We know that our children are not hopelessly pre-destined to fail.

Five hundred years ago, forward-looking and open-minded people shed the specter of the kind of pre-destination that astrology proffered its sect of believers. Likewise, for the autism community today, the time is ripe for the transformation of our thinking, of our acting, and of autism itself. We need a new premise. Our gaze needs to be cast upward and our confidence needs to be magnified in great measure if change, and a chance for our children, is to take place.


[i] Snow, Theodore P., The Dynamic Universe, Second Edition. West Publishing Company, St. Paul, MN, 1985. pgs. 159-161.

[ii] Ibid. p. 166.

[iii] Ibid. pgs. 3-4.

[iv] Rate of Autism increasing…

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