A Skeptical Survey of the Terrain

Transcription

1 Alternative Treatments for Autism: A Skeptical Survey of the Terrain Glen R. Elliott, Ph.D., M.D. Chief Psychiatrist and Interim Clinical Services Director The Children s Health Council Emeritus Professor of Clinical Psychiatry, UCSF Professor of Clinical Psychiatry (Affiliated), Stanford Objectives Review the history of alternative or non-standard treatments and practices relating to autism Discuss factors favoring the recurrent appearance of promising interventions Consider ways in which families wishing to pursue these types of approaches can minimize risk and optimize the potential utility for their child Acknowledged Biases I believe in and largely restrict my practice to the use of conventional medicines. I believe autism is a biological disorder probably with multiple causes, none of which are understood yet in any detail. I know of no test of any sort that definitively identifies the cause of autism I believe existing available treatments are largely palliative and facilitative, not curative. Domains of Interest Putative causes Diagnostic procedures to identify causes or abnormalities Cures Treatments to alter the course of the disorder of ameliorate problematic behaviors Page 1 of 8

2 Case Study: Secretin In mid-1990s, secretin linked to autism by serendipity. Initial report: infusion of porcine secretin led to cure Rapid acceptance by parents and some professionals of report leading simultaneously 1) efforts to explain effect and 2) high demand for treatment with slower efforts to study reported effect Case Study: Secretin (cont) Some early open-label studies confirmed benefit but less robust effect than initially reported Controlled studies failed to find effect Efforts evolved in several divergent directions Mode of administration transdermal or oral vs. iv Type of secretin porcine vs. human Target of treatment cure vs. improvement Length of treatment single vs. prolonged exposure None of these proved efficacious Case Study: Secretin (cont) Targeted disorder began to change, with reports of possible benefits for schizophrenia or ADHD Current consensus (25 controlled studies) is that secretin has no marked effect on the course of autism Even so, it is available and used, typically in forms not well studied. General Observations Those endorsing alternative treatments seldom align with a specific theoretical framework New approaches emerge quicker than old ones disappear Over time, approaches tend to lose potency, going from cure to help. Page 2 of 8

3 Putative Causes of Autism Genetics fairly compelling indirect evidence but no leads to date (mostly increased risk) Fragile X Some metabolic disorders, e.g., PKU Specific damage largely unproven but highly evocative Heavy metals (lead, mercury) Immunizations (DPT, MMR) Putative Causes of Autism (cont) Specific Deficits (often excess or deficit) -- unproven, especially in terms of causal link Leaky gut Immune problem Brain system (cerebellum) Higher Level Problem Sensory (e.g., auditory) Information processing Attachment Putative Causes of Autism (cont) Summary: Many levels of defects postulated; difficulty is in establishing causal links to underlying problem or possible solutions Therefore: Currently little justification for extensive testing for clinical purposes at least for purpose of defining treatment for a specific patient Diagnostic Procedures for Autism Sources: blood, urine, feces, hair Measured entities: (nearly innumerable) Vitamins & minerals Neuroregulators (neurotransmitters/metabolites) Possible pathogens Toxins Possible irritants (allergens) Bodily (esp. brain) function Page 3 of 8

4 Diagnostic Procedures for Autism (cont) Sources: blood, urine, feces, hair Measured entities: (nearly innumerable) Vitamins & minerals Neuroregulators (neurotransmitters/metabolites) Possible pathogens Toxins Possible irritants (allergens) Bodily function (esp. gut & brain) Diagnostic Procedures for Autism (cont) Summary: no available test available to either diagnosing autism or identifying a specific viable treatment Therefore: Use tests for guided purpose, not as general screen Cures for Autism No compelling current candidates, but usually one or two at any given time Biological Chelation therapy or mud bath Hyperbaric treatment Secretin Physiological Auditory retraining EEG training Behavioral Discrete trial learning Holding therapy Cures for Autism (cont) Broad Treatment approaches Pharmacological Secretin, fenfluramine Nutritional Various combinations of supplements and restrictions Homeopathic Various targets Interventional Changing parenting style or other aspects of environment Summary: none have established benefit Therefore: approach cautiously Page 4 of 8

5 Disorder-Altering Interventions By far the richest area of diversity precisely because the goals are diffuse Amelioration of symptoms or improved function in specific areas may be useful Requires most careful parental attention to balance cost, possible benefit, and potential risks Disorder-Altering Interventions (cont) Summary: Parents and professionals have available a plethora of variably studied and highly divergent interventions that commonly have low impact either because they seldom work or work often but with small changes Therefore: it is important to have some internal criteria before proceeding to utilize such treatments Guidelines for Considering an Intervention Useful questions: What behaviors need changing? Is the proposed intervention apt to help? What are the potential risks? How to know if the intervention is helping? How to know if it is time to stop? Page 5 of 8

6 Key Factors in Weighing Decisions Child s age Most agree that early interventions hold greatest hope but Young children undergo greatest spontaneous change and may be most vulnerable to adverse changes Conventional vs. Alternative Treatments Some alternative treatments may prevent use of more conventional interventions so May need to contrast small incremental gains with promise of major strides Some Red Flags Characterizations of treatments as safe because they are natural Unsubstantiated assertions that thousands of children have been cured Citations of remarkably high success rates with strikingly low to no adverse reactions Guarantees of success Some Red Flags (cont) Claims that an intervention works equally well for All children with autism Autism and an array of other diagnostic entities Veiled or overt references to suppressed or lost interventions from years gone by Promises that seem too good to be true: they almost certainly are Summary Alternative approaches are an increasingly important aspect of the treatment terrain. Being outside common medical practice makes them neither safer nor more efficacious or or less so. If parents choose to utilize such approaches or or for that matter any approaches they should do so with skepticism and some level of scientific rigor. Parents should be encouraged no to be afraid to declare a halt. Page 6 of 8