I might have a child doing very well clinically, but the NeuroSPECT can still show that I still have not restored full function to the temporal lobes.
We need to raise our expectations of these children and understand this is a serious disease, not a developmental disability or a built-in genetic defect. What often may seem good enough under the guise of “autism,” “ADHD,” or other “LD” is not really nearly good enough if one starts thinking they began with a normal, or above-normal child.
If one understands we are not really looking at mysterious defective children (in a way too this day is not documented or validated by any objective markers within those labels, groups of symptoms), then one has to begin to seriously look at advice we give as pediatricians to parents about their children. Pediatricians and the medical world must step up to help parents of children do a better job in understanding them, parenting them, and dealing actively with their illness. They must realistically have a true goal of helping them to become more productive children, young adults, eventually independent, productive people (not forever dependent on social welfare). Working with this, particularly the severe-end autism, has been very eye-opening.
I often try to explain to parents that if you think of these children as children, it changes the entire approach to therapy; in reality we should all come back to basic pediatric training as an approach valid for any child that has been ill, not developmentally delayed or damaged in some mysterious manner. Once you get past medication choices, the restrictions of avoiding medications or supplements or therapy approaches (i.e., chelation, HBOT, etc.) that can harm a potentially normal child or brain, the next step becomes what everybody should be focusing on, which is how do you help to educate, to redevelop a child.
I can remember one of my early patients, a child who could not speak, but typed everything out on computer, and was obviously a very intelligent child. In fact, he eventually was in fourth grade in New York, attending and working in regular classes, but could not say a word. One day he was particularly misbehaving in his class, causing a very difficult time for the teacher and the school. Since I was due to see him for a consult in a few days, I asked the mother to have him explain why this was happening. I will never forget his note, a major learning experience. Essentially he wrote he was tired of being thought of as stupid, tired of people thinking he was dumb. He wanted a chance to learn more. How many behavioralists would remotely understand or give advice based on a child like this? If only others could understand the magnitude of what this child was feeling, so many others must be feeling. His mom and I were able to explain to him that we understood him, that if we were going to give him a chance to be in better classes, he had to be good in behavior, he could not get aggressive, he could not act out (even if frustrated with himself). From that day forward we were able to move the child into better classes, he became an excellent student, and eventually was able to be in regular classes in spite of the very difficult progress with language.
Referring to the child above who was in New York and not able to talk at nearly twelve years old, after moving to Washington, not classified under the autistic “label” any longer, he began to be able to talk, after receiving services from therapists who “would not take no for an answer!”
It’s interesting to note that many of these children frequently have a heat or cold intolerance. Heat intolerance is a classic problem for many with autoimmune disorders—women with lupus often experience flare-ups on a hot or humid day. The lupus symptoms are often severely exaggerated under such conditions. I have an entire subgroup of children that show an outright heat intolerance, some mild, some severe.
As a child’s brain and body become clearer, stronger, and healthier and it becomes possible to restore fine and gross motor areas, it is time to address the issues of apraxia affecting oral motor and speech.
I have seen many children go from awkward, resisting sport participation (even when brains were clearer), resisting writing (fine motor issues), to succeeding readily as member of sport teams, individually within their family (able to play ball with father, brother, or sister), and more. How many children do we allow to suffer when their brains and bodies are failing them, but are not broken, not really defective (in some mysterious way).
It has been my experience to see many older children and teenagers talk who had never talked before. This occurs with a combination of medical therapy, The Goldberg Approach, and excellent rehabilitative work by speech pathologists who understood oral motor apraxia, and were open to recognizing the medical nature of these children’s dysfunction.
To not expect to be able to help a child get their language skills back under the guise of autism is not only doing a grave disservice to these children, but in reality, if you really think of them as children, you could begin to rationally argue that we are abusing these children. Very few “experts” that I have spoken with even remotely seem to understand how real the frustration is for these potentially above average to very intelligent children. In fact, understanding that many, likely most, of these children are starting off with above-average, sometimes brilliant potential, begins to change how one should be looking at, interpreting what we have called an “idiot savant.” This concept has been that of an individual who is somehow expected to be retarded or below average in significant areas of function and ability because of their having “autism,” while seeming brilliant (by accident, a mystery) in others. In reality, we need to begin to understand if the brilliant or above-average areas are that child’s true ability. High functioning or “Asperger’s” with its ongoing dysfunction is not really an acceptable end point. But these children are not approached with the concept of figuring out how to make the low areas healthy, how to really bring up, restore those functions.
The direction and the expected goals and needs of therapy must change. If one recognizes that they are working with a potentially normal or above normal child, one would never think of a repetitive manner of education as appropriate or even mentally healthy. If we think of ourselves as children, when a teacher asked us to write our names or something else on the board ten to twenty times, it was not to educate us, it was to punish us! If a child is being good and cooperating, they do not deserve to be punished. In fairness, if a child is completely zoney, completely spaced out, a benign, modified ABA type of approach may be justified (better than nothing), but if a child is brightening up, and his or her brain is beginning to work, therapy goals and approach must change with that child.
It remains my strong belief that if we begin to look at these children the right way—as sufferers of a disease—many capable pediatric developmental specialists, good child psychiatrists, and well-trained therapists will know how to help those children far better than the ideas being currently being used or proposed. The ideal of rehabilitating a child carries over even stronger when it comes to speech. I learned early that to try to teach a child, have them say what might be a stage III or stage IV skill, before stage I or II have been developed, is a mistake. This makes sense physiologically, as we are taught as physicians and therapists, that when the brain learns developmental/functional steps out of order, it is often harder to undo that and harder to correct that. To achieve fluency, a chance for normal function, one must always work from the bottom up. This applies to speech and to all areas of child development.
If we go back to reality, back to the fact these children are ill children, then speech therapists almost automatically will go back to their basic training. As pediatricians and speech pathologists, we are trained in school that when any child has delays early in life, multiple ear infections, any serious illness or dysfunction altering their normal development, their development of language, you need to restart from the earliest skills. You didn’t step in and just try to get words from that child; instead you had to go back and help redevelop their early skills. Speech professionals are taught to start with six-month skills, then eight-month, ten-month, one-year skills, working their way up the devel
opmental ladder. Without a full background, how many “neurotypical” children could talk correctly? How does a child under the label of “autism” have a chance, when we do not approach them with any of the effort and expectations we apply to a potentially normal child? Working with an excellent speech pathologist oriented toward rehabilitation (think of your children as a stroke victim rather than a child with autism), it was my early pleasure to see ten-, twelve-, fourteen-year-olds begin to talk, when they could not talk before. Sadly, it has been my ongoing frustration with children who are becoming very bright and alert that they often do not receive the proper therapy tools to have the potential to recover language the way they should.
One of my first patients with this was a child from fairly wealthy parents in Philadelphia. Over a two-year period we documented return of normal function in his temporal lobes; clinically he was appearing as a bright and alert child, and yet in spite of working with the “best speech therapists in Philadelphia”, he could not say one word. Beginning to learn about and understand this, I told them he needed a speech pathologist who understood rehabilitation. Being very motivated, these parents found a “rehab speech pathologist.” First evaluation session with the child, the rehab pathologist tells the parents, “Your child cannot talk, he cannot even stick out his tongue!” The “top people” this child had been seeing for two years had never approached this child as they would have any “neurotypical” child who had delays.
Focusing on using therapy to obtain a bright, alert, healthy child, many updates and follow-up discussions circle back to how I trained, what I was accustomed to as a general pediatrician. How do you help a parent deal with a child behaviorally, and most important, how do you try to optimize a healthy child developmentally? This background has turned out to be a major area helping me with these children. As stated earlier, you must have the expertise to evaluate a child, based on where they are developmentally, which should in turn guide behavioral, educational, and developmental needs. If it’s a seven-year-old child who is only a two-year-old developmentally, you must parent, discipline, praise, educate, and work with that child as a two-year-old, not the seven-year chronological age. If it’s a fifteen-year-old, and he’s a five- or seven-year-old, you must deal with that child appropriately. As I have found with minor adjustments and understanding of background frustrations, difficulties, you parent a child very much as you would a normal two-year-old, five-year-old, or seven-year-old. These children are frequently redirected and refocused instead of given appropriate consequence or behavioral corrections for a child functioning at their age range. No normal child grows up without a mixture of love and discipline. Treating these children like they cannot understand correction often makes them much worse behaviorally and educationally.
The success of many of these higher expectations—the right to parent a child as a potentially normal child with delays—depends upon a child being bright, being alert, being able to process. So I will partly qualify that you cannot expect these results until you’ve also looked at the medical side of therapy, but if you have been looking to medical therapy and a child is brighter and functioning better, then one must think and respond appropriately as a parent, as a pediatrician. It is perhaps wiser to try to work with a child, even if he or she is still zoney, assuming they are intelligent, rather than allow bad habits to develop (which are then harder to undo).
As a a pediatrician, you might tell a parent of a six-month-old, one-year-old, and even perhaps when an eighteen-month-old child is reaching for something on the table, going or doing something appropriately, you in essence might redirect them, refocus them. But somewhere by two, two and a half, if that child doesn’t respond to caution and parental guidance, they do not listen to the parent, most parents are then going to begin to institute some type of time-out, some type of consequence. It has been my very sad experience to realize that we make many of these children into disasters behaviorally, not because they have to be, but because we don’t discipline or help them in the way we would a normal child.
Is it is very hard to expect a normal child to grow up okay, without a mixture of love and discipline. All love is usually not good, all discipline is usually not good. So again, it is a situation that if you think of these children as likely damaged, retarded, unfortunately you might think of redirecting, refocusing them, using only positive reinforcements. But if you think of them as an ill, but potentially normal or above-normal child, as noted, behavioral and education advice and goals change dramatically.
Also, I must stress that clearing a child medically, helping them be able to feel better, is critical from a number of directions, including the fact that how much of what is thought of as behavioral acting-out or self-injury is really because these children are miserable, they are in pain (headaches, body aches), not just because they are choosing to be difficult or misbehave. Help relieve that discomfort, help clear up the brain, help a child be able to begin to comprehend, and then you can work with that child in a much more positive, healthier, more normal method and pattern.
I was advised how many of these children seemed to be impervious to pain. Just the opposite has been my experience. Help them return to normal functioning physiologically, and they feel pain just like any other child. However, when in constant pain, constant discomfort, what’s a little more at times?
I have said to many parents over the years that if experts really understood what was happening to these children, we would be calling it child abuse if we thought of these children as anything but “autistic.” While we are more civilized, PC, use the term “special needs,” the implication remains an expected level of retardation, instead of a normal or significantly above normal IQ.
As noted, the NeuroSPECT has helped me tremendously over the years, first to begin to define and understand this dysfunction, and then to be able to guide me with ongoing clinical management and therapies. While many clinical decisions become obvious over time, instead of assumptions or educated ideas, the NeuroSPECT is like a road map, showing what is working or not working in the brain.
After the initial steps above, after usually initiating an SSRI (interactions in the temporal lobe directly influence the frontal lobes and other areas of the brain), I will then attempt to focus on what is left residually abnormal in the brain. If a child is doing well, but there is still temporal lobe hypoperfusion, it is going to be a reason to reevaluate each step of therapy, and if indicated, potentially change choice of SSRI. If there is what is called frontal lobe hyperperfusion (increased blood flow), after controlling diet, eliminating supplements and any other products that might be irritating the GI tract or stimulating the brain or both, I will consider agents such as Wellbutrin or Strattera. Both seem to affect the norepinephrine-dopanergic system, potentially helping to regulate these areas, in what again if used judiciously, used to restore physiologic functioning, seems to be very safe long-term.
It turns out an old-fashioned medication called Tenex has a significant place in children, adolescents, and young adults with this dysfunction. While it was originally classified as a blood pressure medication, as a pediatrician I was introduced to it as a medication for children who were hyper, but too young for stimulant meds (which I have never believed in, and have a very limited constructive application). Now, while it can be used for hyperness in a younger child (with hyperfrontality—to some degree physiologic in some children), it has been extremely constructive in addressing basal ganglia, deeper brain stem hyperperfusion. As it turns out, Dr. Ismael Mena was able to validate that this hyperperfusion was due to inflammation; therefore I have come to look at compensating for that as another positive step in balancing the brain. If hyperperfusion is present on NeuroSPECT, I will use Tenex, never to sedate a child or adult, but rather to help improve function, overall sharpness, and alertness.
A special-ed teacher, who started with me as a teenager with ADHD and fatigue, on a recent scan had some basal ganglia hyperperfusion (increased blood flow in deeper areas
of the brain). She started on low-dose Tenex, and while not complaining previously, on follow-up she commented she could settle down, fall asleep easier, her brain could get into gear and stay on task easier.
Why are we not applying new technologies, using new abilities to make more educated, directed judgments in any attempt to diagnose a learning dysfunction in a child and with any application of a neurotropic agent. How much harm do physicians allow to happen iatrogenically, by not using newer imaging, new tools in a far more constructive manner? Happily, the NeuroSPECT has helped guide therapy decisions for me while continuing to push for access to agents, therapies that could in theory end this one day for children and adults.
I am opposed to any neurotropic agent that does not act in a manner one can rationalize as healthy for the patient or their brain. Most meds acting in a neurotropic manner would never meet this criterion. Sadly, among the many medications being given more and more frequently to children (and adults) are what are called stimulant medications. The starting point was Ritalin and old-fashioned amphetamines, but most newer ones are merely variations of the same. Sadly, parents are not told that any of these stimulant-based medications are just like giving a child cocaine. There are many studies in the literature now supporting that Ritalin is just like cocaine, only stronger. I’ve yet to see a study saying or implying a brain was healthier with cocaine. While sometimes, with the general stresses these children’s brain have been through, I have been encouraged to be open to very low dosages; I remain quite concerned that at normal dosing, especially when used with a mixed or quiet ADHD child, particularly with no SSRI support of the temporal lobes, one has a high chance of decreasing function in key, critical cognitive areas of their brains. Sadly, as noted previously, this misuse may now be a key reason contributing to the ongoing discussions of the “dumbing-down” of our school-age children.
The Myth of Autism Page 13