The Medical Mismanagement of Autism

by Siegfried Othmer | August 29th, 2009

Neurofeedback addresses itself to the underlying issue in the classic autistic symptoms, which is brain disregulation.We should be grateful, I suppose, that autism is now finally getting attention from the medical community. As late as the 1990’s, parents were still being blamed for the condition by their pediatricians. And until recently the attempts by DAN doctors (Defeat Autism Now) to get at the medical roots of the condition were mocked by their medical colleagues. But the developing mainline approach to autism exhibits the tendencies typical for modern medicine, which is to target the symptoms rather than the condition that gives rise to them.

What follows is an actual case description of the treatment of sleep disorder and self-injurious behavior in the Child and Adolescent Psychopathology Department of Sainte-Anne’ s Hospital. One of the children presenting with severe autistic behavior exhibited persistent sleep disorder and motor instability even with the standard multidisciplinary program at the hospital. This led to successive prescriptions of several different psychotropic drugs:

“Initial treatment by thioridazine (10mg per day) followed by propericiazine (2.5mg per day) improved sleep, but was not efficient in reducing self-mutilating behavior. A new treatment by risperidone (from 0.5mg to 1.5mg per day) was therefore chosen; however it lost its efficacy after five months. Finally, an anxiolytic (cyamemazine) and a thymoregulator (sodium valproate) [an anti-convulsant and mood stabilizer] were successively tried without yielding any clinical improvement.

“Owing to the persistence of communication difficulties, major instability, self-mutilating behavior and heteroaggressiveness, treatment with naltrexone was subsequently chosen with parental consent.

“The onset of treatment, at a dose of 1mg/kg/day, led to a transitory increase in negative behavior. However, a dose of 0.75mg/kg per day subsequently led to significant improvements, as shown by outcome measurements. Self-mutilating behavior disappeared completely. Certain side effects were observed, namely transitory sedation at the beginning of treatment and moderate constipation.

“CONCLUSION: This clinical case confirms that treatment of a serious autistic disorder in children using Naltrexone in oral suspension form is a potentially interesting therapeutic alternative for treating behavioral symptoms resistant to classical drug therapy.”

So we have a child here who after many months of unsuccessful medical treatment is now on three different medications that will require long-term management, and who still has a constipation problem that requires resolution. Constipation is a serious issue in autism because gut function is typically compromised in any event. It would be nice not to make it any worse. As for the sleep issue, there is no medical remedy for chronic sleep problems. No medical remedy for sleep issues is intended for long-term use. So this child is just at the beginning of what promises to be an unsatisfactory saga. It behooves one to publish quickly before the news turn sour. (On a side note, it should be said that the utility of Naltrexone in this application has been investigated by the Dan Docs for some years now.)

With the Othmer method of neurofeedback, it is likely that a single training protocol would lead to the substantial resolution of the sleep disregulation, the self-injurious behavior, the aggressiveness, and the behavioral instabilities in this child. In addition there should be improved motor control. On the basis of past experience, such improvements should be in hand over a modest number of training sessions that can be accomplished within a few weeks. No negative side effects are in the offing. This also means that most of the other therapies endured by this child beforehand might also be foreshortened in duration and improved in outcome.

Now it might be argued that neurofeedback is also a technique that targets the symptoms rather than the underlying cause. Well, yes and no. The root medical causes of autism are not being addressed with neurofeedback, to be sure, but the brain is in the loop with respect to the various medical issues that lie in the causal chain. That is to say, the status of disregulation of the autistic brain worsens the medical condition of the child. Good immune function and good gut function depend upon good brain function. Relieve the brain-based disregulation, and medical management becomes more tractable.

Also, a corrective is in order with respect to seeing neurofeedback as targeting specific symptoms. The objective is better brain self-regulation in considerable generality. Symptom status is merely a way of judging success in that strategy. This becomes obvious once we are beyond the classic symptoms and into improving functional capacities. The same methods carry us smoothly from one domain to the other.

In fact, then, neurofeedback addresses itself to the underlying issue in the classic autistic symptoms, which is brain disregulation. And it addresses itself as well to the core medical issues by intervening at the system level to effect enhanced allostastic and homeodynamic equilibrium with respect to immune, endocrine, and digestive function. For both of these reasons, neurofeedback should be placed near the top of the hierarchy of approaches in the recovery from autism.

There is also a third reason. In our engagement with the concrete issues, medical and otherwise, that arise around autism the child himself sometimes tends to get lost in the discussion. What is the child’s experience of himself and of the outside world, one is prompted to ask. Those of us who feel quite at home in this world and are buffered by healthy relationships may find it difficult to imagine just how an autistic child comes to terms. With neurofeedback, the regularization of neuronal network interactions has an essentially immediate consequence for the child’s sense of self and of relationship to others.

Our very first obligation as care givers is to maximize the comfort level of the client, and this is largely an issue in the psychological domain. We can accomplish this with neurofeedback because it bypasses the problems that frustrate conventional therapeutic techniques with these children. Neurofeedback facilitates an interaction that the brain has with itself, hence finessing nearly all of the challenges of working with a cognitively and emotionally compromised child.

Siegfried Othmer, Ph.D.

2 Responses to “The Medical Mismanagement of Autism”

  1. Kim Oakley says:

    My son’s been punching himself in the head for over 18 years. A total nightmare to try and get the confusing system serving disable and massive medical bureacracies to address. Every treatment for his SIB, I’ve had to fight like an animal to even get professionals to consider. This is how it goes: I discover latest research on a new drug or treatment for SIB. I call doctor’s office and am screened (everytime I call) by intake person who writes my message or concern down. Then, I wait 3-4 days so a nurse can call me back and ask me the same questions and I again repeat what I want for my son. Then the nurse tells me she’ll run it by the doctor, and get back to me. That’s another 4-5 days. Then, if I’m lucky, I will get the prescription to try the new drug approach, or I’m told, “no.” Make an appointment and I’m re-directed to the appointment center where I spend 28 minutes on the phone waiting to speak to a person so I can make an appointment with the doctor’s office whose nurse I had just spoken with. Then I have to drag my self abusive prone non verbal autistic son who likes to plop down in the middle of street or on sidwalks into the HMO building, where we stand in a line to wait to check in. Then we are told to sit down. That’s usually when the self biting begins (his not mine, though i’ve been tempted myself…) Then we are called into another room, where a medical assistant will always try and take his temp. and weight and blood pressure, which usually triggers a quick bout of self punching. Then we wait again in the exam room. After about 27 more minutes, I see the doctor, always a nice lady, but rushed and obviously dealing with a heavy caseload. I then explain to her the latest research and give her evidence based on clinical or scientific studies validating what I’m asking her to let us try…and then we try it, but it takes 4-7 weeks for a drug to “kick in” and see if it works. Sadly, as research shows, no drug cures self injurious behavior outside general sedation PRN. Worse, most drugs carry side effects and many people don’t realize the autistic person with chronic pervasive sib, are behaviorally fragile. That means there are a multitude of antedecents that fluctuate daily involved with the self injurious disorder. Even more confusing, is at night the sib can be triggered by myoclonic jerks, which startle and anger him, so he punches self, but the next day, the sib can be triggered by a loud noise or change in rountine without one shred of seizure activity going on. It’s enough to drivve anyone insane sometimes….yet you keep going. The problem we all know and don’t want to admit is the only way we will ever help children like mine is to do extensive long term obsevational studies that include specific tests (sleeep EEGs) brain pet scans, etc….to see exactly what the hell is going on here. What we have now is a mess. A complete hit and miss medical rountine that just keeps guessing and trying the lastest thing because in a system that doesn’t allow for constant medical analysis and treatment, and pretty much just does the acute management of symptoms…you can’t really help an autistic person suffering from chronic and pervasive sib….and then to make it worse, if you put them into a hospital setting to study them, you will ruin their routine, so now you’re dealing with a bunch of nurses who will run around yelling, “dilaudid” or “we need sedation for patient” This sets up my son for being overmedicated for behaviors triggered by hosptial setting that he’s in to get treatment for medical issues triggering sib…a most complicated case. The good news is that he LOVES water…he can’t swim so he requires total protective supervision, of course, as he does 24/7, but boy does water seem to be the soother for him….if only we could keep him in water 1/2 the day, we’d probably make him the happiest head punching prone autistic boy on teh planent.

    • Thanks for taking the time to tell your very moving story. As it happens, we had a child similar to your son in our office last year. He came in wearing a thick jacket, although we are here in Southern California where that is not usually part of anyone’s wardrobe. The jacket was for the purpose of keeping him from biting his arm. After just a handful of neurofeedback sessions, he showed up without the jacket. The changes he observed within himself were so profound that he insisted on changing his name. He was no longer the person he had been up to that time. (Many months later, after considering all the ramifications, he returned to his given name.)

      The method we used with this boy had just been developed in our office, and would not have been available to him even six months earlier. We have been working with the problem of self-injurious behavior for many years, mostly in connection with Tourette Syndrome, but we were never as consistently successful as we are now with our new methods. In your case, therefore, as with nearly all cases in the autistic spectrum, we believe that we have something more to offer than most of the alternative approaches to neurofeedback. I suggest that you look for a practitioner who is up to date on the “Othmer Method” and who also has experience specifically with the autistic spectrum.

      Your son’s response to water is reminiscent of the experience of some autistic children in the presence of marine animals such as dolphins. Obviously the dolphins were primary in that experience, but water was part of it also. The relevant aspect of being in water may be the feeling of pressure over the whole body, which can be experienced as calming. The salient aspect of being with the dolphins may be that the relationship to the animals is non-threatening, first of all, and that it is without expectations or demands on the part of the dolphin. Reports coming back from such experiences include significant subsidence of autistic behaviors.

      This is a clue for us. Much can be accomplished simply by allowing the autistic child to move toward calmer states. This is what we attempt to accomplish with our training. The first order of business is not to address all the objectionalbe behaviors, but rather to see to it that the autistic child is comfortable in his own skin.
      That in turn, opens the door for everything else….

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