Out of pure desperation, my wife is seeking possibilities with alternative treatments. One of mom's in school (we just started LEAP program) recommended and said it did miracles for her. I honestly find it hard to believe, too good to be true and opportunism of the 'doctors', exploiting our desperation and fear. But i'm open to all opinions, please
Thanks in advance,
I do not believe in wasting time with unproven therapies, supplements are good if the child needs them, so it is good to have the testing done to determine if they are needed. You do not have to get into expensive genetic testing just standards blood tests will do most times. Other than that I would stick with ABA speech, OT and PT they do in fact work as long as you have good therapists. After that depending on the severity of ASD you may need meds to take the edge off. All of this takes time an patients because not every combination works with every child it is kind of a trial and error. If the child’s team of doctors and therapists know what they are doing you will see the results but it does take time. Do not grasp at straws and just try anything because you are wasting valuable time and money.
Our biomed dr. does NOT perform nor recommend chelation & hyperbaric oxygen because he feels the risk/potential benefit ratio is unfavorable.
Anybody who promises a "cure" is overhyping their treatment. But that does NOT mean that it's all just snake oil and you should just stick to pharmaceuticals and ABA. Pharmaceuticals have their appropriate place in treatment, as does ABA. But so do nutrition and some of the biomed treatments that have some actual science to back them up like Oxytocin nasal spray and methyl B12 injections. Most M.D.'s are not familiar with the emerging science in favor of treating ASD from a biomedical standpoint. That is why it is so important to find a good biomed dr. to oversee treatment.
The new MAPS doctor approach which is a fellowship program started for autism specialization is specifically to treat comorbid conditions in autism which can be tested. Some conditions (especially in LFA) such as cerebral folate deficiency, if detected early, can completely reverse autistic behaviours altogether but most do not catch or even test this.
And if one tests for antiNMDA receptor auto antibodies and have regressive autism after febrile illness, there are case studies published on completely reversing autistic behaviour using IVIG / steroids. This is almost never tested either.
Three other medical conditions which are genetics and have very high ASD but can still significant alleviate or prevent autistic disorders are PKU, biotindaise deficiency and SLOS. pKU is often tested as part or newborn screening but not the other two.
These are just some comorbid conditions. Others include mito dysfunction, seizures, gut dysbiosis / issues, immune activation, oxidative stress, allergies, etc.
So who is going to test for these and it her comorbid medical conditions when my pediatrician, who has zero knowledge on ASD medical research, won't even prescribe a routine blood test?
I vote smoke and mirrors anytime the claim is "it treats autism" rather than "it treats [specific condition that may go with autism]".
The issue with autism is that it's a trait (symptom) and not a condition (cause). So when we say someone "has autism" that is a description, not an explanation. The explanation, most likely, varies widely. It may be for one person primarily a motor issue that keeps them from speaking and controlling movement. It may be for another person primarily a sensory issue. It may be for yet another person the outcome of seizures which are damaging neurons. It may be for yet another person due to a different "thinking style," often genetic, whether "in pictures" or highly analytical. It may be for yet another person premature birth or de novo mutation causing some kind of different brain development. It may be for another person mostly a global intellectual disability with social skills also affected, while it may be for others a very specific learning disability in the area of social skills.
So... teaching skills and behavior will help for all cases where the autistic person is able to learn and demonstrate learning, as most can.
But most biomed stuff, if it ever works, will be extremely specific to one or two of these possible underlying conditions. You need some kind of evidence about what _specifically_ is going on beyond the autism diagnosis, and often that evidence simply is not available. Trying a lot of potentially harmful, potentially expensive treatments basically at random is unwise. Stick to things you have solid reasons to think apply to a specific person.
Even when autism arises from some medical cause, that doesn't mean you can reverse it that way. Think about Representative Giffords who was shot in the head. Her recovery (after they stopped the bleeding) was through behavioral methods: teaching and practicing until her brain re-routed around the bullet's path. So while brain issues are always physical (the brain is a physical object), the way you change the brain is typically educational. And education can be extremely powerful, though also extremely slow and difficult.
If there's a medical issue, treat the medical issue. If there's no evidence of one, medical treatments are probably not appropriate and can be financially and physically harmful.
It can also be helpful to think very specifically about goals; the goal is not to "remove autism" but to solve specific difficulties that a person or their family may be having. Anytime people talk vaguely about "getting better" or "reducing symptoms" that is too vague to measure progress and too vague to act on.
Just one opinion.