Why Defend Biomedical? | Autism PDD

I only have our story with our dd and what we did for her..which was ABA, diet, supplements, some chelation, nystatin and speech. I have no regrets and would do it all again if I had too and alot sooner if I had known earlier. No link. Sorry. I copied and pasted it from a newsletter I receive.We do the whole ABA,diet,biomed,speech thing. It is a lot of work but no
regrets here.

http://www.autism.com/ari/enewsletter/enewsletter_200710.htm #LETTER.BLOCK18

Thanks for sending it to me via email. I realized when reading it that it came from the ARI Newsletter.

[QUOTE=Payne's Mom]

LOL...why not...everyone else does!

ABA has helped our son the big differences have come from diet and supplements and now chelation

Do you have a website link? From the Editor: In Defense of Biomedical

By Contributing Editor Kendra Pettengill, Former President of FEAT of Oregon

The biomedical treatment approach to autism has received a lot of recent attention in the media. Despite encouraging reports, we continue to hear from the naysayers - the CDC, pediatricians, and medical organizations - who claim there is inadequate proof that these "alternative" approaches work. Their message is clear: parents should wait for the lengthy scientific studies that prove or disprove any given therapy.

But children with autism deserve medical treatment, and families cannot wait for the mainstream to catch up. So, many of us set out on our own, often finding that our children improve. And we tell each other these stories, and there is great celebration.

So why hasn't the rest of the world caught on yet?

First, the critical studies just aren't being done. If so-called experts are asking parents to wait, then they should at least begin conducting the studies.

Second, we must carefully examine the studies that are proposed or underway, and whether the protocols are in line with the Defeat Autism Now! approach. Many in the autism community remember the secretin studies that were compromised by inadequate trials, resulting in what could be interpreted as a negative finding. Parents and clinicians using secretin (a peptide hormone) with positive results for their children were dumbfounded by the botched protocol of the studies, and the consequent wholesale dismissal of the treatment. Despite the study's misinterpretation, many using secretin continued, but the biased conclusions meant many parents would never realize secretin is a possible treatment for their children.

Our Children Deserve to be Treated
Since Dr. Kanner first identified twelve children with autism, mainstream medicine has acknowledged frequent co-morbid medical conditions. But too often we hear parents say, "If a typical child had the symptoms my child has, he would be run through the wringer of diagnostic tests to find out why he is in such severe pain all the time, suffering from severe gastrointestinal symptoms, explosive diarrhea, chronic constipation, hard and distended abdomen, severe bowel impaction accompanied by explosive diarrhea, etc., etc." So why, when it comes to autism, do mainstream caregivers too often dismiss untreated the physical manifestations of the disease as "just the autism," tragically leaving children with poor or non-existent verbal skills to suffer?

Some parents are given the message that their children don't warrant testing and adequate treatment because they're unable to ask for it, or accurately report its effect. The tacit suggestion is that trying to help such a child could be a big "waste." That kind of inhumane rhetoric is the basis for this parent-driven movement - just as the ridiculous "refrigerator mother" theory ignited the fire for Bernie Rimland half a century ago.

Parents Are the Engine that Drives this Movement
Human suffering is a relentless taskmaster, and parents coping with children in pain want to know what's being done today for individuals living with autism, not what genetic testing is planned for three years from now. Humane and compassionate medical care for ill children should not have to be defended at all. Parent-led initiatives are taking hold in more states every year, and there is growing awareness that many individuals with autism are improving (and even recovering) with a biomedical approach. A growing number of intelligent clinicians are getting a handle on this issue, and noticing several simple truths about our kids:

Many suffer severe, painful gastrointestinal issues that warrant treatment.
Many have diagnosable immune disorders.
Many suffer treatable chronic infections - ears, bladders, skin, etc.
Many have treatable nutritional deficiencies and metabolic disorders.
Their test results for metal toxicity are often extremely high.

In the mainstream autism world, these observations are often disregarded, but they shouldn't be. Individuals without autism are treated for these conditions, with insurance routinely paying the bills. Our children should be no different. If there's medical evidence, it isn't "anecdotal." The detractors who dismiss all biomedical approaches as anecdotally-based refuse to consider the evidence. They are tossing diagnosable conditions in the heap with magnets and crystals, demonstrating a lack of careful deliberation that is not in the best interest of our kids, or of proper research.

Desperation, the Springboard to Informed Help
Some think parents are made witless by desperation, continually duped by charlatans promising miracle cures. They accuse treatment providers of "preying" on grief-stricken parents. Somehow these people fail to notice that those seeking effective treatments are typically intelligent and often highly educated parents, who were forced to do their own research after watching their child suffer neglect and mistreatment by standard allopathic physicians. When parents apply what they've learned, good results are often ignored.

Until mainstream medicine quits shutting out families, and stops refusing to treat children for severe medical symptoms and obvious distress, the parents of children with autism will continue to search for clinicians who will.

Parents are tenacious. This underestimated group sifts through the many forms of information available online, at parent support groups, in libraries, at parent-founded non-profits, and from compassionate, informed physicians. The federal agencies seem not to comprehend that their own shortcomings have necessitated that direction, leadership, and action must come from parents themselves, and that's exactly what's happening.

If it were not for parents, there would be no research agenda, no non-profits, no support agencies, no independent autism research. If it were not for parents, schools would not be providing a fair and appropriate education for these children. If it were not for parents, the vaccine schedule of this nation would continue to increase unchecked, and would still contain neurotoxins such as thimerosal (please note that many still contain aluminum). If it were not for parents demanding treatment for their children, we wouldn't have increasing numbers of providers offering effective behavioral treatments. Without parents, there would be no Defeat Autism Now!

Once parents are forced to find their own answers, to become medically and scientifically educated, to find and fund their child's treatments while denied insurance coverage, to organize and drive the political agenda for their child's sake as well as that of numbers of unknown children, they can't be expected to just go home and bake cookies or return to their office desks, trusting these same providers and agencies to now somehow suddenly do the right thing and fill the longtime voids. Inaction let the lions out of the cage, and empty promises, half-hearted efforts, and lame studies are not about to get the lions to return quietly.

The Elephant in the Living Room
I submit that the real issue with 'alternative' biomedical treatments for autism is "vaccine-induced autism," a legal and political hot potato. Oddly, detractors seem significantly unbothered by the thousands of parents who report great success with a gluten-free/casein-free diet. And you don't hear those same detractors screaming about parents trying RDI or Floortime, therapeutic interventions yet to be scientifically studied that have shown anecdotal improvements for many children with autism.

Do we need to be protected from these treatments as well? Aren't these parents also being victimized by "charlatans"? Why come down so hard on some promising if unproved treatments, while blandly accepting others?

National medical organizations, as well as federal agencies tasked with oversight, not only refuse to recognize effective biomedical treatments, they refuse to ask for or conduct the studies that would prove or disprove them. Genetic studies are a safe diversion from the work of sifting through charts to identify testable patterns in the data on biomedical treatments, possibly uncovering inconvenient truths.

These groups attempt to outlaw specific treatments and in doing so hurt the families who benefit from them. They offer us all a glimpse at the ugly atmosphere of self-preservation that prevents expanded research in this field. They will always pose as the protectors of innocent children who they say are being experimented on with "dangerous and unproven" therapies. But critical thinkers will see the hypocrisy of condemning safe treatments like diets and supplements, meanwhile prescribing psychotropic drugs that were never adequately tested on children and that are known to have high risks and devastating side affects even in the neurotypical population.

Parent advocates will continue to face persecution and many will arrive at the realization that it would be easier to give up and accept the "no known cause, no cure" diagnosis. Depleted by the fight, many will drop by the wayside, unable to defend their position or their child.

It is in fact the federal agencies and medical organizations that should be defending their positions, not the parents who are left to wonder why their loving devotion to their child is dismissed as desperate and foolish.

Biomedicine is the application of biology and physiology to clinical medicine-what's "alternative" about that? There is no need to defend biomedical treatments; the results are already speaking for themselves, and the chorus will only grow louder. I'm not going to defend it, but I'd like for the nay-sayers to step into our shoes...but for the record...IT WORKS!

[QUOTE=Payne's Mom]I'm not going to defend it, but I'd like for the nay-sayers to step into our shoes...but for the record...IT WORKS! [/QUOTE]

Agreed.

Glad you agree Cam...I'd hate to have to argue it with you