Integral for the Masses: Suffer Little Children

Keith Bellamy

Keith BellamyThe ancient Chinese curse, “May your children live in interesting times” is well and truly upon us. With every passing day, life as we have come to know and love it seems to be unraveling at the seams. For many, a wave of suffering is washing away expectations, and lifestyles are being torn to shreds by the man-made tsunami that is upon us; we are at a bifurcation point in our lives longing for the past but having to create a future that was never on the radar screens. My heart reaches out to all these tortured souls, and I hope they find peace in the brave new world that we all have to come to terms with.

Yet they are not the people that I want to focus on. My concern at the moment is with a population of children very close to my heart. A population that has been treated shoddily during the good times and are no doubt are going to be treated even worse during the bad. This is a population that is mentioned frequently by politicians and leaders as being in need of support and assistance, primarily as a means to win votes. Once in office it is quickly abandoned or shoved into the tray marked “not to be touched with a barge pole”. I am referring to children diagnosed to have disorders on the Autistic Spectrum, and to their parents, siblings and extended families whose lives are forever changed in ways that the majority of us cannot even begin to imagine.

I have to declare a vested interest. My wife owns and runs a center that treats children on the Autistic Spectrum. In particular, her organization provides Early Intervention Services to children under the age of five, and in most cases under the age of three. To be frank, my wife and her dedicated staff are miracle workers—they take these children on a different developmental track and with love, care, passion and expertise make them able to function in this crazy world we live in today. Note I do not say heal, because once autistic the individual might always display autistic symptoms and behaviors. But that needn’t necessarily impair the child, especially if they are given treatment at an early age. But more on that later. The awe in which I hold my wife and her team is indescribable, but the shenanigans that the political establishment are playing is effectively forcing centers like my wife’s into oblivion.

The shortsightedness of decisions being taken today will not only affect the children and their families, but society as a whole for a long time to come. If ever there was a need for Integral Leadership to be applied to one particular area of life, then this is it. Yet, from all the evidence available to us, those with the power to do something prefer to stick their heads in the sand, ostrich like, and hope the problem will go away. It will not, and their actions, or should I say inactions will only make things worse.

But I am getting ahead of myself. As you are probably aware we are, in the Western World, in the midst of an epidemic unlike any that has hit society. When my wife began treating children a quarter of a century ago, the probability of a child developing autism was one in 10,000. An extremely unlikely event and very low on the list of concerns that parents had for their newborns. Today, that probability has come down to one child in every 150. It is a plague that is sweeping through our society, a plague that does not differentiate race, creed or social status, and we are only just coming to terms with its potential to distort the fabric of society as we know it.

I have to add that some of the reasons why the numbers have risen so drastically are to do more with our awareness of autism than necessarily the increase in the disease itself. Pediatricians more readily identify autistic symptoms today and diagnose the condition. Also a number of additional symptoms have been added to the “Autistic Spectrum”, which means some children are considered autistic today who would not have been in the past. However, even taking these factors into account does not explain why we have experienced almost two orders of magnitude increase in the number of autistic children within our society.

It is important to note that the effects of autism are extremely varied and range from the mild symptoms of not being able to hold eye contact when holding a conversation to the completely debilitating being unable to talk or function “normally” without a full-time support system in place. Of course we all remember Dustin Hoffman’s portrayal of Raymond in the film Rain Man as an Idiot Savant, and the popular TV show Grey’s Anatomy has a leading heart surgeon who suffers from Asperger’s Syndrome. These are both conditions on the spectrum, but they are exceptions rather than the rule.

In many of the cases, a perfectly healthy baby who is developing normally suddenly, sometimes literally overnight, stops developing and even loses many of his/her capabilities such as speech, balance, hand-eye coordination and making eye-contact. The social stigma attached to having an impaired child often leads to the parents and other family members turning a blind-eye to the reversal.

Many parents and guardians have little understanding of what to expect a 15 – 20 month child to be doing developmentally anyway. Ignorance can be bliss and excuses are easily made when John or Jose or Maurice (I make no excuse for just using boys names as 90% of cases of autism affect boys) seem to be acting differently from their peers. Easily made, that is, until the disruptive behaviors become too much for the family. In many cases, the child may not be diagnosed for some considerable time, usually not until the parent’s take him/her in for a regular medical check. Such delays can, and do, have a major impact on the child’s future potential. The earlier interventional therapies can be applied, the greater the potential for the child to be able to function effectively.

The big question is, of course, “what causes autism?” The simple answer is that we do not know. You will probably have been living on a desert island, Robinson Crusoe style, if you hadn’t heard the arguments that autism was caused through vaccination. More accurately, Thimerosal—a compound that is 49.6% mercury by weight—being used to preserve vaccinations was alleged by parents, and some experts, as being the cause. The pharmaceutical industry did whatever it normally does in such cases and commissioned a series of studies that bombarded us with statistics that denied a direct causal link between Thimerosal and autism.

Today, both parties, wave studies at each other across a divide that stops progress being made. Who is right? Who is wrong? The answer, which from an Integral point of view is obvious, is that both sides hold partial truths. From over 25 years of treating children on the autistic spectrum, my wife has developed her own theory of what causes autism. It is predicated on the fact that there is unlikely to be single cause associated with the condition. It is multi-factorial and is like a set of dominoes that knock each other down in succession. Sometimes, a child might have some of the factors but not reach the tipping point and become autistic; in others the sequence of events tips them over the edge into the condition.

It has to be remembered that no child is born with autism, but if my wife is correct in her hypothesis, the foundations for autism are laid long before the child is ever conceived. There is no conclusive evidence that an autism gene is responsible, nor is there much likelihood of our finding one. Cluster studies show that autistic children tend to be found living in similar environmental conditions. This gives rise to the possibility that toxins or other substances might have the ability to affect the child’s parents by modifying chromosomes epigenetically. These proteins that hitch a ride on the child’s genome can cause cells to behave abnormally creating a potential for the disease but not a guarantee that it will necessarily arise.

Over his or her short life as the child is subjected to the world, he/she encounters a number of assaults on his/her immune system. This is natural, and is part of the process used to develop the immune system and keep the child healthy. However, the child with the compromised epigenetically modified genome reacts to these assaults differently from a healthy child. Research has shown that autistic children tend to excrete vital fats, which some researchers say are the same ones necessary to build myelin sheaths around vital pathways in the brain and also to vital motor centers in the body. These myelin sheaths are essential for establishing super-highways across the brain and accelerating signals between different areas of the brain allowing them to function effectively together.

FMRI studies show that the brains of autistic children and adults are wired differently from those without the condition. They have far fewer high-speed pathways in place making coordination of multiple neural activities more difficult to achieve. As a consequence, neurons tend to fire more frequently leading to disruptive signals that interfere with basic functions.

The excretion of essential fats in response to each assault on the immune system might help explain the impact on development and also the loss of function as highways that have been established are dismantled in response to each attack. Eventually, one attack, which could well be a vaccination, tips the child over the edge.

It is early days yet, and sadly research is still very sparse, especially around a multi-factorial cause to the disease. The pharmaceutical industry would love to have a simple, single cause allowing them to develop a vaccination that prevents it occurring or a pill to cure it. I wouldn’t recommend holding your breath waiting for these silver bullets being developed. So in the meantime, we need to rely on the application of techniques that help counteract the implications of the physical actions taking place within the body of the afflicted child. That is where early intervention comes to the fore.

It is beyond the scope of this column to describe in depth the elements of early intervention; suffice it to say it is a multi-modality approach to stimulating the child’s developmental processes in an attempt to counteract the process that is causing the condition to manifest. Again, there is little research that has been conducted on exactly why the application of Occupational, Speech and Physical Therapies in conjunction with Special Education and a practice known as Applied Behavioral Analysis (an application of Skinner’s Behavioral Psychology that has a real benefit) makes a difference to a child’s development, but it does.

When the therapies are applied in a child-centric fashion the results are outstanding. Having therapists treat the child as a team and reinforce the work of each other achieves spectacular results. To see a child who is unable to make eye-contact and is without language when they commence therapy brush pass you in a hallway after 6-months, look you straight in the eye and say, “Excuse me,” just makes the heart sing. What we do know is that the earlier that treatment begins, the better the results for the child. The high plasticity of the child’s brain at such an early age along with the reinforcing nature of the therapies are thought to help establish brain connections that would otherwise not be created because of the condition. Again, there is little or no research that can either confirm or refute these theories.

However, there is a great deal of research that confirms that money spent on early intervention repays itself manifold as the afflicted child is able to contribute more actively to society. The reductions in special education, medical care, mental-health care, social care and of course the penal system far outweigh the costs taken to treat the child. One would have thought that our leaders would be falling over themselves to make these treatments available. And to a certain extent they are. Yet what our politicians say, and what they do are two very different things. The old western movie line of, “white man speaks with forked tongue,” is still very relevant today with respect to politicians and their stance on he treatment of children with autism.

In what is a blink-of-an-eye, in political timeframes, a massive bureaucracy has established itself to control the flow of funds mandated by law to serve the afflicted children. In New York State, for example, treatment of autistic children is managed by the Department of Health up until the age of three, and then transfers to the Department of Education and the school systems. When one considers the first symptoms of autism do not occur until around two years old, by the time the child enters treatment having had to undergo a barrage of evaluations, there is little time before they have to undergo a separate set of evaluations moving from one bureaucratic jurisdiction to another. More importantly, the support regime transforms from one focused on the child and his/her family, to one designed to minimize any impact or disruption to the educations system.

The chaos surrounding the condition makes it suspect to latest trends and fads that appear feasible on paper, but can have dire consequences when put into practice. For example, it is mandated that any treatments should be minimally disruptive to the child’s life, which on the face of it is not unreasonable. However, this has been interpreted by some bureaucratic mandarins that instead of bringing a child to a center where he or she can receive treatments from a team of specialists in a concerted, coordinated, cooperative and cohesive manner, the treatments should be provided by individual practitioners at home or in a day-care center or some other community setting. This requires a stream of individuals into the child’s life, which in turn is more disruptive and time consuming and eats into the child’s ability to do normal activities like tumble-tots and other such activities which are part of the non-autistic child’s lifestyle.

It is important to note that no single solution is correct for every child, but when a mechanistic dictate is imposed by bureaucracy in a “one size fits all manner, it is not difficult to guess who is going to suffer. For example, one side effect of this policy is that it effectively reduces the number of treatment sessions that a child actually receives, to say nothing about the effects of multiple practitioners reinforcing each other’s practice because they work together in a team all focused on the child’s best interests, as opposed to individually. As a consequence, this reduction leads to lower costs for the bureaucrats, which of course they deny is their intention. However, my inner cynic dismisses their cries of “foul” with a pinch of salt. In New York State, the rates paid for early intervention services have not been increased since 2002, when they were already woefully low. Well that’s not quite the whole truth! Since 2002 there have been two increases in rates passed into law, only to be removed by Governors of different political persuasions, and a third proposed increase that did not even make it onto the statute book.

Costs are important, especially in the current economic climate. But the shortsighted actions of our elected leaders are resulting in a breakdown in the provision of the services mandated by law, at a time when they have never been more needed. Robbing Peter to pay Paul less than he deserves for his services is a strategy that is destined to fail. It is time to get our acts together. In these days of appointing Czars to oversee failing industries, perhaps we need a Czar to oversee failing bureaucracies as well. Never, in my humble, but biased opinion, has there been a need for integral thinking to be applied to resolve what is not just a short term problem, but one that is going to not only remain with us but is likely to be exacerbated by our current ineptitude.

Until this happens, the children will suffer. And those children are likely to be your own, your grandchildren and children of friends and colleagues. As Oliver Cromwell said to the Rump Parliament in England in 1653, “You have been sat too long here for any good you have been doing. Depart, I say, and let us have done with you!” probably applies to the bureaucrats charged with overseeing our response to this modern day plague. Perhaps, in this time of unprecedented change, somebody will have the audacity to make the same statement and we can start providing the innocent victims with the support they need?