A Careful Approach to Alternative Treatments for Autism
Obviously, as anyone who has worked with people on the autism spectrum knows, these are only two of many therapies available - and they may or may not be appropriate for any given individual. They are, however, relatively easy to research because their application is consistent and structured, and outcomes can be compared based on agreed-upon standards.
That leaves us with dozens - if not hundreds - of "alternative" treatments for autism, ranging from play therapy to chelation (removal of metals from the body in an effort to remediate mercury poisoning) to various supplements, diets, even clay baths. Some of these therapies are truly harmless (there's no way you can possibly hurt a child by playing with him); others, particularly the biomedical interventions, carry the possibility of doing harm.
While I would not advise a parent against doing what they believe is best for their child, I would recommend that, when attempting any new treatment, you follow the following guidelines:
- If this is a biomedical treatment, undertake it only under the direct and involved supervision of a qualified medical practitioner. This refers not only to chelation and supplements, but also to specialized diets which may have a negative nutritional impact on your child.
- If this is a new treatment, take scrupulous notes on what it is intended to do, and on its apparent outcomes - side effects included. Consider using a video camera to record your child's behavior before, during and after the treatment or therapy.
- Try one approach at a time. If you start, for example, a special diet AND a new school AND developmental therapy all at the same time, it will be impossible to parse out which approach is working (or causing problems). Wait at least three months to decide whether a particular approach is helpful.
If you have suggestions as to specific treatments or people who you feel should be included in this new section, please let me know!
Comments
I had my son on Risperdal for almost three years, but the psychiatric nurse practioner who sees my son now said that on-going research has shown a link between Risperdal and juvenile diabetes. We switched him to Topamax, which seems to work just as well.
The other ‘alternative’ therapy (or whatever you want to call it) that has worked very well for my son is deep touch–he really enjoys tickling (though I have to be careful he doesn’t get too out of control, since he’s nearly as big as me now), and being ‘thumped’ — when I hug him, and thump his back repeatedly.
My daughter has been treated with what you call “alternative” biomedical interventions for five years now. I fail to see how these approaches are “alternative,” but rather holistic and comprehensive medicine. Nutritional/mineral deficiencies are supplemented. Toxic overloads of heavy metals (which they have trouble excreting on their own) are treated with the appropriate drugs. Yeast, bacterial and fungal overgrowth in the gut is treated, as is the intestinal inflammation… and coupled with some dietary restrictions (to prevent feeding yeast)… the chronic diarrhea goes away…
And our kids get BETTER.
My child went from a sick, self-injurious, tantruming little girl who never learned a thing and had NO skills… to a healthy, happy girl who can now PAY attention… learn new skills (feeding, dressing, toilet), allows us to touch her again and has become much more social.
And that was BEFORE we did any ABA therapy!
So this is NOT alternative. It is Responsible, whole-body approaches to health and healing that meet the needs of the individual’s biochemistry. The label of “Autism” causes so many doctors to ignore obvious medical issues that go undiagnosed. If that’s “mainstream,” I’ll have no part of it.
For the purposes of the About.com Health Channel, any treatments which are not part of the medical mainstream are considered “complementary,” “alternative,” and/or “developing.” This is not to say that they are considered inappropriate or ineffective, but they are not part of the medical mainstream.
I do stand by the recommendation, however, that any new treatments – particularly those that are recommended by friends and websites rather than by medical practitioners – be approached with caution and care. I’m very glad that biomedical interventions worked well for your child – but it is quite possible to make changes or undertake treatments which have the potential to be harmful if not appropriately monitored and managed.
Lisa Rudy
Lisa said “but it is quite possible to make changes or undertake treatments which have the potential to be harmful if not appropriately monitored and managed.”
Lisa, the same goes for treatments like Risperdal, Ritalin, Adderall and Strattera. So many synthetic, pharmaceutical approaches that ARE mainstream can have VERY negative side effects. Many biomed parents I speak with came from that approach and will never look back.
That said, ALL medical interventions, be they chemical or organic should be done under the direction of a qualified M.D. But NEVER should the growing body of biomedical research (there IS a lot of science available) and many of the resultant treatments be marginalized or so heavily labeled “CAUTION” while the pharmaceuticals are so freely given out by M.D.’s who don’t even bother to see what’s going on inside these kids’ bodies.
Every parent should do their own research and not be afraid to ask questions and seek more than one doctor’s medical opinion on their children.
Lisa, I’m mystified by your comments “new treatments – particularly those that are recommended by friends and websites rather than by medical practitioners – be approached with caution and care. I’m very glad that biomedical interventions worked well for your child – but it is quite possible to make changes or undertake treatments which have the potential to be harmful if not appropriately monitored and managed”.
Lisa, Dr Rimland studied treatments for autism for decades- and the results of those treatments are found on the ARI/DAN! website- from a survey of 25,500 parents- the top rated treatments that showed improvements in autism are: Chelation 73%, SCD diet 66%, gf-cf diet 65%, Melatonin 63%, Food allergy treatment 62%, Digestive enzymes 57%, Fatty Acids /EFA’s 55%, Feingold diet 55%. The Defeat Autism Now Think Tank of doctors and researchers has provided parents with hope and recovery. Treatments for gut disorders, toxic encephalopathy, IgG mediated food allergies, mitochondrial damage, heavy metal toxicity- just to name a few- are helping children get better- and yes, these treatments ARE being monitored by the doctors who are actually treating our children for he underlying causes of their neurological symptoms.
I have an issue with you quoting double-blind studies- because the problem there is our government has wasted the last 40 years chasing down a genetics-based mental disorder- so they’ve been barking up the wrong tree. The CDC’s refusal to fund studies on thimerosal, environmental issues, gut disorders, immune system issues, and toxin-mediated brain injury has put autism research in the dark ages. Please refer to the ASA’s December 2006 Environmental edition for more information on the concensus for treatments and research. This is certainly a step in the right direction. To get funded for those double blind studies, our government must FIRST stop the insanity of chasing down “those genes”. In 20 years, they have YET to find a gene that causes autism. Pioneers such as Mady Hornig, Jill James, Tom Burbacher, Isaac Pessah, Martha Herbert, Andrew Wakefield, Arthur Krigsman, Richard Deth, and Tim Buie are to be commended for their research in the real underlying causes for the epidemic facing us. ~There’s no such thing as a GENETIC EPIDEMIC~. I encourage you to actually read and look at the Simpsonwood documents, paying special attention to the original data and comments from those in attendance. I would also be more than happy to provide you, or any author or journalist numerous scientific papers related to findings on toxicity=neurological disorders. In fact, a recent published study in China showed that children with ADHD had 9.69x the amount of mercury in their bodies vs typical children.
I’m very concerned that you seem to be promoting Risperadal, which has been shown to cause Type II diabetes and cause males to lactate. Though Risperadal is FDA approved, I’d like to point out…so was Vioxx, Fen-Phen, and Thalidomide. I’d also like to point out that ABA is an awesome tool in recovery- which our own government endorses- yet fails to mandate states to provide funding for. Only 17 states in the US have medicaid funded ABA, and only a few states provide funding and services to families suffering under the burden of autism. Remember, to get the results our children need to recover, FIRST our government has to admit what autism really is, then they have to fund it. I am encouraging readers to help research make history- and donate to the Tom Burbacher’s monkeys vs thimerosal study, part II. 100% of all donations received by the National Autism Association (go to their website) will be applied directly to Burbacher’s research. (curiously, Burbacher’s 15+ year history of funding from NIH disapated once he published the damning paper of results from thimerosal vs monkey part I…woops..he gave the wrong answer!) If history repeats itself, as we know it does, the admission of harm, and the funding to those injured, will come 20 years too late. Think Vietnam Vets vs Agent Orange here…
I think you may be reading into what I wrote.
I’m not saying that there is a “genetic epidemic,” or that autism is caused by one thing or another. I don’t know what causes autism. I do know that there are studies which both confirm and deny the efficacy of a wide variety of treatments, ranging from Dr. Rimland’s DAN! protocol to sensory integration therapy to behavioral and developmental interventions. Most of those studies have been conducted by legitimate researchers who are doing their best to do good and useful work.
What I AM saying is that there is a potential for harm in implementing most interventions (including, in my opinion, ABA and risperdal) – and that therefore any intervention should be undertaken with care. I am also saying that it is a good idea to take extremely good records of changes that occur during the treatment, and to undertake one form of treatment at a time.
I am not a “true believer” in the medical mainstream. By the same token, when I see legitimate disagreement among researchers who have appropriate backgrounds and positive intentions, I am cautious.
On the subject of treatments recommended by friends, etc.: I think there is a temptation to hear about a treatment through a friend or website, and to just go ahead and give it a shot. I know I did. For example, a friend suggested a GFCF diet, so I just decided to try it out – but didn’t really understand how pervasive gluten is, that soy can also be an allergen, that my son could be missing important nutrients, etc. I also found myself seeing changes from day to day that, once I implemented a more careful record-taking system, I realized were artifacts of wishful thinking.
That’s why I recommend that parents be cautious and careful when they undertake new treatment approaches, and why I strongly recommend video as a “neutral” way to record change over time.
Lisa-
I am impressed to hear that this website will be including more discussion on “alternative treatment”. Bravo!
After our last email discussion I had lost hope you would think twice about exploring other options. *I’m the one you deleted Great Plains Lab from my comments.
As you can see by the response this time, there are MANY parents (including myself) that have seen tremendous results using biomedical intervention. My son’s D.A.N. doctor (a licensed medical physician) is nothing short of a hero to me! (I don’t consider most physicians qualified, unless they have gone through D.A.N. training to understand and implement the specialized tests necessary to help our kids.) My own son’s pediatrician admitted most of the tests were “out of his league”. Needless to say, we haven’t been back to see him.
I can’t speak for others, but I would assume I share the same sense of frustration due to the lack of government acknowledgement of the cause of Autism – which the biomed parents know is mercury (and bundled live-virus vaccinations paired with an over-the-top vaccination schedule) – and the government knows also, but they are too busy searching for a ‘more comfortable’ answer to give the Autistic community, which will never be found (how convenient).
I am also concerned that we as parents are being scared away from biomedical and dietary treatments for our ASD kids. I personally help diagnosed families find the resources they need to help their ASD kids – to make INFORMED decisions. I don’t prescribe anyting….I give them information. Time after time I hear, “I was told this was dangerous”, “My doctor said the diet doesn’t work”, etc.
My families that try the GFCF diet (done correctly) come back to me saying their child did amazing things within just days and they wished their child could have been on the diet long ago, but their Pediatric Developmental Specialist said the diet was nonsense and would lead to malnutrition.
This is how I see it:
1. Our children were GIVEN Autistim
2. Some moms were GIVEN a heavy metal burden through RhoGam shots while pregnant (I was.)
2. We are told NOT to pursue biomedical/dietary treatments
3. We are not provided government funded programs desparately needed – Early Intervention is the only paid therapy my son receives. EI is only one of 6 therapy-based classes my son attends. The rest are out-of-pocket, and VERY expensive.
4. Medical insurance won’t pay for anything – they consider it to be a mental health issue (how convenient)
This is a lot of stress to deal with, so when I come across parents and professionals downplaying or excusing biomedical/dietary treatment – it is very sad. If they only could understand how wrong they are. So many children will go without the benefits of biomed treatment just because their parents were misinformed. If our kids could commmunicate I’d bet they would tell us to research everything to help rescue them from Autism.
I tell my parents to listen to those who have had DIRECT EXPERIENCE with certain treatments.
Parents, the information is out there. Have the courage to research.
- Devin’s Mom
Regarding chelation for mercury-induced autism, contact Andrew Hall Cutler, PhD, PE of Sammamish, Washington. He recommends a low-and-slow protocol using carefully timed, weight-based doses of DMSA (meso-2,3-dimercaptosuccinic acid) and ALA (alpha lipoic acid), with nutritional supplementation to offset leaching. Cutler has written technical manuals on hair testing and amalgam illness. You will be hard pressed to find someone who can explain the biochemical kinetics both at a technical level and simplied for a neophyte. I am skeptical of the new NIH chelation study by Susan Swedo; the results will be irrelevant if dose and timing are incorrect and redistribute the mercury, or if no nutritional supplements are given. Many doctors still don’t realize that using a blood test for mercury is inadequate. Peer review is no guarantee that the study will be accurate or useful.
I agree with Nancy, blood is not the best representation of toxic burden. Andrew Cutler’s book, “Hair Test Interpretation: Finding Hidden Toxicities” is worth the read.
-Devin’s Mom
hello..I would like to ask these question ” sometimes I lost my patience because of the behavior of my son who tried to insist things he likes that should not be given because it was according to her O.T. should i shout my son to let him scared and stop on insisting?”
My 20 year old has functioning recovery of Asperger’s Syndrome. Her functioning recovery was achieved through biomedical therapies, DAN protocol, OT supports for SPD – Sensory Processing Disorders and CranioSacral Therapy that continues to control 40 seizure like tics per day. Daily self stimulation techniques to modulate her SPD and CranioSacral for the seizures-tics and OCD maintain her functioning recovery. She works 31 hours per week, dives a car, and just moved into her own apartment. We tried biomedical therapies after her psychiatrist wanted to increase the dose of the 6th antidepressant that was not working.
Yes go to a DAN protocol doctor, expert support is crucial, but try it. I have not spoken to a single parent who’s child has functioning recovery that had not accessed these supports.
I am the mother of a child who has greatly improved (another year and I’ll say cured) of autism by the DAN! biomedical protocol. And I know many other women who have great success with it as well. I had so much to say but could not have said it better than those who commented before me. I just wanted to add that biomedical treatments are many, and interdependent, and complex, and so of course they should be done under the supervision of a doctor who believes in them. But they are WAY SAFER than medication and so its unfair to imply that MORE caution shoule be taken toward them, double bind studies or not.
Also realize that mainstream medical doctors, who are the vast majority, are taught by institutions and sources that are largely influenced by major drug companies who are the very source of thimerisol, and so there is a conflict of interest (I wish I had a more intillectual way of stating that but you know what I mean.) And it saddens me that so much safe biomedical treatment is forgone for so many desperate parents just becuase they were told to avoid it by well meaning mainstream doctors.
I just found a site the other day that has many good testimonials of biomedical succes.
http://www.generationrescue.org
I hope to add my own child’s story there soon. I’m so glad you are branching out into a new catergory for alternative interventions.
Alexis-
I’m not sure what your question is. Could you try and ask it again so we may be more clear what advice you are looking for?
I think you are saying that your son is insistant upon certain things that his O.T. tells you not to give him. And you are wondering if you should shout at him that he cannot have his way, even if he gets upset?
Is this correct? If it is your question, could you give us an example of what it is your son wants that he cannot have.
I’d like to be helpful but I need more information.
- Devin’s Mom
Carolyn-
Thank you for mentioning the website
http://www.generationrescue.org
It is one I recommend to all of my families with ASD kids. I encourage anyone reading our comments to spend some time exploring this website.
The creators of this non-profit organization live in my part of the United States, and my son sees the same DAN doctor as their son. The Handleys are what I term “warrior parents” who seek information and will do whatever it takes to help their child. This takes courage and dedication. My son has seen wonderful results from this DAN doctor and I suggest everyone research to find out where the closest DAN doctor is where they live. http://www.AutismResearchInstitute.com
Great feedback on biomedical intervention. Hopefully our comments will inspire a parent reading to look into the DAN protocol.
- Devin’s Mom
Greetings Lisa,
While I agree that all treatments should be undertaken under the direct supervision of a professional, I feel the gist of your article was biased against “alternative” treatments. It came across to me that the mainstream (read: acceptable)treatments for autism were preferred. I think I can dig up enough negative information on the drug risperdal to make you question yourself, and perhaps YOU should do that. On the other hand, later in your comments you claim that you will present both sides of each story, I really hope that’s so. Parents of autistic children get the hope wrung out of them EVERY time they deal with mainstream physicians who offer no MEDICAL assistance for their child’s MEDICAL problems. Until we stop treating Autism like a mental illness and start treating it like the medical illness it is, we do our children a graver injustice than the one that caused them to be autistic in the first place.
Susan
A good article. I utilized biomedical treatments with my own son and run a local biomedical support group for families pursuing this venue of treatments. I agree 100% that parents wishing to pursue biomedical treatment options must be under the care of a doctor. Many are trying to go about it alone due to the high cost of these doctor’s, it scares me as to what mistakes they may unintenionally make with their children. Hopefully, your article will make some parents reconsider and contact a doctor well versed in biomedical treatment options.
I am finding more and more evidence that leads me to believe that most forms of Autism are not genetic based> Autism is a brain injury caused prevalently by lack of oxygen or natal hypoxia> Difficult births caused by PPHN, cords around necks and blood scarcity can deprive the baby of needed oxygen at birth and this lack of oxygen can and will cause brain damage. PPHN and other complications may be caused by the use of Fluoxetine or other amine based anti-depressant drugs during pregnancy. More research is required in this area. Suffice it to say, it is no coincidence that an Autism epidemic is emerging in the midst of an Amphetamine epidemic. Demographics support this. Where there is anti-depressant drug abuse, there is an Autism epidemic and where there is no amphetamine abuse, Autism does not exist.
Brian-
How would the PPHN theory explain regressive Autism? My son developed typically until age 2 and I have never taken anti-depressants.
I’m curious about the PPHN theory – where did you get the “evidence”?
Maybe you could share your resource so the rest of us may have an opportunity to review it.
-Devin’s Mom
Can dan protocal doctors be use with mainstream doctors ? I am new to this world of childhood autism. My son joe was diagnosed 2 weeks ago and we live the Chicago area.
ABILIFY was accepted by the FDA in 2002 for treatment of schizophrenia, and psychiatrists are given latitude to use it for other things. My adult son’s psychiatrist prescribes ABILIFY and FLUOXETINE (generic Prozac) everyday for the rest of his life. ABILIFY has proven to be a miracle drug to control anger and meltdown impulses in ADULT Apserger’s Disorder. Please read the literature before you ask your doctor to prescribe anything for a child under 18 years of age.
Hi there,
Recently I sent an email to you requesting that you do some research on a new method of treatment, that is gaining ground in Singapore, altho it originated from the US. I have heard nothing from you. May I know if you have received the email I sent?
Fyi, the method I mentioned has now been favorably mentioned in Science Daily, and I quote “Research on autistic spectrum disorder (ASD) shows that this method can remediate anomalies in brain activation, leading to symptom reduction and functional improvement. This evidence raises the hopes for a behavioral, psychophysiological intervention moderating the severity of ASD.”
I am looking forward to having your response. Thank you.
In response to Brian Seibert’s comment – PPHN -persistant pulmonary hypertension of the newborn and the use antidepressants during pregnancy. I think your theory is unfounded. My son was born with PPHN and I took antidepressants for the last 21 days of my pregnancy. My son was diagnosed with ASD and all of my doctors said it had nothing to do with his PPHN or antidepressant use. An MRI showed no brain damage and Apgar scores showed no loss of oxygen to the brain. I find your theory must be based on some personal issue. – yes?