The burning questions surrounding autism are huge: what causes the disorder? what treats it? what cures it? While lay people want answers to these questions NOW, science is a slow and painstaking process. And while parents and caregivers may feel they already know the answers, researchers are more skeptical.
These differences are appropriate. After all, researchers are following the scientific method in a (hopefully) objective manner, while parents and caregivers are raising kids and supporting adults who need help - right now.
But while scientists are certainly right to take the slow, methodical, step-by-step approach to finding answers, they may need to look to parents and families to formulate the questions.
All too often, researchers conduct research that they feel should be convincing and authoritative, only to find that parents and lay individuals are far from impressed. In particular, studies which intend to reassure parents regarding the safety of vaccines or the non-association between autism and various environmental factors, are often disregarded.
There's a reason for this. And it's not simply that non-scientists "don't get it." For example, when a researcher says "epidemiological studies show that any risks associated with vaccines are far less than the risk posed by the disease against which the vaccine operates," parents may believe him.
But that doesn't settle the question: "how can I tell whether a vaccine is likely to injure my individual child?" Nor does it explain "what happened when my child was vaccinated and appeared to regress almost immediately?" The answer, all too often given, is "it was a coincidence," or "perhaps your memory failed you." While coincidence is certainly a strong possibility, it's tremendously frustrating to parents to have their observations summarily dismissed.
When a study states that no connection has been found between gastrointestinal issues and autism, parents may point to other studies which seem to suggest that there IS such a connection. They may also point to dozens of autistic children whom they know of personally who seem to have GI issues. Their question: "is there a subgroup of children with autism who also do have GI issues, and if so - why? and what do we do about it?"
When findings suggest that "children with autism" have certain qualities, or that certain treatments are effective or ineffective, it's helpful in forming policy. But since individual children with autism may have radically different symptoms, abilities and histories, those findings are not particularly helpful for individual families. In fact, so far, there's no evidence that one treatment approach or another is a better choice based on a child's symptoms or challenges.
Clearly, researchers can't focus on the needs of individual children or families. But as we move forward to better understand what autism is (or what autisms are), what causes the disorder in its various forms, and so forth, it's important for physicians and researchers to understand what families need to know.
In the long run, it's the decisions of individual families, schools, insurance companies and program providers that will make the difference for people with autism. If science can't respond to their question and concerns, they will find their own answers - and act on them.
Many have been wanting to ‘know now’ about autism and the causes of, but while some have been waiting longer than others, there has been intervention options for quite some time which those choices as of yet really had nothing to do with potential answers to cause. For instance ABA doesn’t depend on cause in order to obtain it and I’m not even sure other than the age group it targets, that symptom’s really matter other than maybe non verbal. Symptom’s doesn’t determine outcome anyway. As my neighbor enters EI for his son, he wonders often what’s the point. Will his son ever progress? He just said this to us last Friday. And I offer my kid, who is so like his own son at that same age when you thought potty training only happened on another planet, ever following through even on a one-step instruction really means the parent follows the instruction not to cause a meltdown and then the two step instruction of dictating to strangers not to do that or else and you’re not responsible for injury since they were fore-warned…… depending on the age of the child, you as a parent have a hard time seeing past today to where there’s ever be hope for progress. What needs to be spoken more is to that neighbor new to all of this, that his child today isn’t going to be the same in a year, and the progress might be slow but there will be progress. There is far more negativity within hearing about autism, causes and intervention choices than there ever was when I first walked this road. It seems one is doomed.
Regarding the safety of vaccines, it’s important to say that many side effects have been known prior long before autism was in question. Many things of the individual will factor into this, but when considering if vaccines are right for any family, there’s more to consider than just the possibility of autism and also that no one medication or vaccine is safe for everyone. Unfortunately, this isn’t sci fi and we have no idea yet for many things what contributes to what so you make the best choices with the info offered. I would think there is a sub group of about any disorder as well, and maybe focusing on that sub group takes away from the whole overview picture of autism. Maybe that sub group will be found really to be of it’s own disorder and not autism at all.
It can’t be solved, it’s a bit more difficult than solving Reyes. With Reyes we had children who were ill with flu/chickenpox, given aspirin, developing Reyes, and children who were ill , not given aspirin not developing Reyes.( with exception of those children who were exposed to the organophosphate pesticide ,fenitrothion , which looked pretty suspicious, as well, in combo with the same illnesses)
With autism, we, for some “unknown” reason are refused studies comparing non vaccinated children. This may not be enough, we may need non vaccinated children, born to non vaccinated moms,as many chemicals and viruses seem to extend themselves into the next generation,and possibly into a third. Example..the finding of simian 40 in the brain tumors of the grandchildren of polio vaccine recipients.
We have no choice but to pick and choose the epidemiological studies that suit our “tastes”, they are available on both sides of the vaccine issue. Scientific data is impossible, absolutely impossible, to gather which would identify a causal relationship between vaccine and autism in humans, and we seem unwilling to accept animal data showing similar injury in monkeys and rats. If any other chemical pointed so strongly to autism it would be on the label, “could cause autism”, we aren’t doing this, yet we labeled rotovirus vaccine listing it as a possible suspect in “kawasaki”.
Aspirin, btw, limited bacterial reproduction, not known as an antibiotic, effectivly it worked similarly to reduce the numbers of bacteria, it would be great if we could use it today to perhaps halt mrsa infections. Aspirin was great as an anti-inflamatory drug, given at time of vaccine probably was useful in preventing side effects, while the newer routine of offering tylenol with shots, could perhaps add to the toxic burden. There isn’t a way to solve this, we have to make choices, I don’t like not having the baby vaccinated, it makes me uncomfortable, yet, I see he’s not exhibiting any strange behaviors, and most amazingly he can speak more clearly than his brothers, there will be no need for speech therapy, he doesn’t melt down, he isn’t obsessive, to be honest he is the odd one in the group, he’s so intact, he even blew out his own first birthday candle, why, because I asked him to. He does a lot of things I ask him to do, things the others could never accomplish, following multi step directions. Should I believe this is all coincidental? No, he’s all the proof I need to believe vaccines cause, asthma, autism, crohns, kawasaki,exzema,articulation and speech delays, motor delays, and on and on. Will he be a math whiz, or a music genius, probably not, because he’s just normal and well rounded, doing nothing outstanding . I have the math whiz, the asthmatic, the melt down kid, the gastro diseases, the speech delays, the motor delays, the heart disease (kawasaki), all of the rest have suffered from what I now believe were induced problems. I would, however, like to know one day just what they injected into these children that altered their lives.
I just read an obituary of a well respected doctor in our area, his comment on why he lived so long, beside quitting smoking at age 86, was that he stayed away from doctors, unless he wanted a fishing buddy. Best advice ever!
Are you saying the causes of autism will never be solved? None of those studies on either side have been anything but links so far. And are you saying the best advice is staying away from doctors?
If a particular child’s autism presents with no physical symptoms outside of motor delays, and there are no behaviors or mood disorders that would require medical treatment, then a doctor can’t do anything to “treat autism.” He can recommend therapies (though many don’t), give your child well-child check ups, but that’s about it.
In fact, after our first visit to the developmental pediatrician we received nothing but a diagnosis, a sheaf of papers printed from a parent support site, and a handshake. Then we were asked to make a followup appointment for six months later.
I didn’t make the appointment, because I could see no reason to make the trek to the high-end children’s hospital just to hear “how’s he doing? yep, he’s still got symptoms.” I suppose that if we’d kept going twice a year, we might at some point have heard “well I think he’s graduated from PDD to Aspergers.”
I’m sure this is why parents are drawn to DAN doctors. They DO something – even if that something is questionable to many.
Lisa
The place which diagnosed my child did offer services per their ‘center’, but the diagnosing doctor being a psych wouldn’t had offered much other than meds. Even if a child displays only autism type things, autism is such that really, even if you go the biomedical route, you’d still need speech therapy and maybe O.T. If you go the bio route, you’d still need to be sure that doctor is a GI doc to address GI issues.
The psych my son see’s now for his autism other than being helpful med-wise, offers no intervention other than that.
Since autism seems to require a wide range of interventions, I doubt there’s one doc out there that can offer it all per that one person.
A child should never go for a DX every 6 months. They’ll tend to memorize the tests, making the answers unreliable.
What is that saying..”never say never”..I read something “very” interesting today in our local paper. First I need to correct..Dr.Schenker was only 106! Now, for what I believe may be another “clue” ..
Reported in the journal , Brain, Behavior and Immunity..
Depressed pregnant women respond more severely to flu vaccine, producing higher levels of potentially damaging cytokines.
Twenty-two pregnant women, filled out questionaires about their depression status, before being immunized, and gave blood samples. Six to nine days after immunization, they gave a second sample. The higher their score for depression symptoms the higher their level of immune molecules.
This provides a level of scientific proof that there is at least one group who are reacting poorly to vaccines. The assumption of course is that they would react poorly to the flu as well, however, the science SHOULD not allow for assumptions. Cytokine storms have long been considered in the vaccine/autism connection. There is evidence, and it should be followed.
I believe this finding shouldn’t be assumed to corelated to the actual illness, simply because the actual illness, while yes, “could” rarely cause these “storms” ,does NOT contain AN ADJUVANT designed to enhance an immune response.