I appreciate the reasoned response. I cannot tell you how many times I, as a parent of a boy (almost 9yo now) with ASD sat there wishing with all my heart that my kid would have instead some other disease, something like schizophrenia, or BP, that would have some kind of chance of treatment and him leading a normal life. He is not non-verbal, and is mainstreamed in 3rd grade now, but I really do not see him having a chance at independent normal adulthood. Which means that I and my wife must somehow manage to live forever.
So I am sorry, but when I see someone referring to autistic children parents’ concerns as “shrieking” or “hysteria”, I cannot let it go by.
I apologize for not communicating clearly. A dear friend of mine has a child with severe autism, and having watched her struggles, I get incredibly frustrated with the Wakefields and Geiers and McCarthys, who go into ranting foaming rage about disproven theories and thus distract money and attention from research into the real reasons for the disorder. That’s the kind of shrieking and hysteria I was referring to - the people who are still pushing the “vaccines cause autism” nonsense, or using chelation therapy to “treat” children with autism (and killing some of them), or in other ways causing harm by pushing their anti-science, anti-medicine agendas. The Barbara Loe Fishers of the world, who use the National Vaccine Information Center or other public soapboxes to frighten parents and blame doctors and scientists for the disorder.
We could have been SO MUCH FURTHER ALONG in understanding the causes and developing better treatments if the people I mentioned above hadn’t dragged the last 13 years of scientific research off course.
I agree that the vaccine fearmongering and the chelation therapy is crap - but I really don’t see it retarding research into causes and treatments of autism. It is irrelevant. There are also all kinds of voodoo “treatments” of cancer - but they do not interfere with cancer research.
What is extremely discouraging and disheartening is just how far away from any kind of understanding and solutions for autism we are. There are all kinds of theories on causes of autism, but they are just theories, and a lot of them, if correct, would provide no lead to any kind of pharmaceutical treatment, since they all theorize early disruption in brain development that cannot be “corrected”…
Research monies are very scarce these days, and getting scarcer. Every time we have to, in the name of public health, take some of those monies to do yet another study about the safety of vaccines, so people will start vaccinating their children again, that’s money that isn’t available for research into the actual causes of autism. Or for any other medical research, for that matter.
Voodoo treatments for cancer do interfere with cancer research IF those treatments take money away from real research. With regard to the vaccine issue, we’ve already started to lose herd immunity for whooping cough and measles. Continuing to do research in that area in order to convince people that vaccines won’t harm their children and will save lives means less research money for other studies.
Whether or not pharmaceutical treatment might become available, finding the causes of that early disruption can lead to interventions to prevent it, lessen it, or alleviate the effects. You may not agree with me on this issue, but I truly do think that we’ve had to spend too much money on public health concerns about vaccines, and that’s taken time and money away from good research into the issue.
Of course, another issue is the issue that the article in the OP discusses - diagnostic substitution. Many of these children would have been diagnosed with mental retardation or other childhood issues in past generations, so it’s only recently that there’s reached a critical mass of sorts to create the impetus for research in the area.
I knew I should either have taken the time to write a more explanative post or not post at all…and I ended up doing neither…
Oh, we have expanded our horizons…believe me. We’ve fought over the White Plains Tests, DAN doctors, teachers, psychologists/psychiatrists, Regional Centers, DDS (yes the article the OP sited lightly skims what we already know about about how autism is defined, diagnosed and treated in the state of California), and my kid could have easily replaced any other kid in that article. We have worked with autistic adults for the last 20 years with our day programs for developmentally disabled adults…my wife worked as a case worker for one of those Regional Centers in California for the 7 years previous to our business. We’ve been immersed with people with developmental disabilities (hundreds, if not over a thousand) over those years…our horizon is quite broad. We have seen the Regional Center system in California incorrectly diagnose clients with Autism as some other disorder, and have seen other clients with mental illness incorrectly diagnosed with Autism. Again, we live, eat and breathe what the article lightly skims over in the state of California…20 years for me…a lifetime for my wife (she has a sister with severe mental retardation).
His sample sizes are the patients he actually treats over a course of years. I know that doesn’t make iron-clad research, but his patients have positive outcomes. In a few short months, the best results for our son have come from Dr. Goldberg thus far. He still has a way to go, but his demeanor is better, his eye contact is better, his language and verbal skills are better and things are less stressful at home and at school. Not perfect…but better.
While I agree with you with the “One person with autism” saying, I am going to disagree with you with your first paragraph. Before the redefining of autism (the spectrum definition) in the last 10-20 years, there was Classic Autism, aka Kanner’s Syndrome where it was defined as a form of infantile psychosis with an onset in the first 30 months of life. It is characterized by infantile autism, with signs of lack of attachment, avoidance of eye contact, and general failure to develop social relationships; rituals and compulsive behavior manifested by a resistance to change and repetitive acts; general intellectual retardation; and language disorders, which may range from muteness to echolalia. When the broadening of the definition came along recently (1987 and 1994), it scooped up a lot of kids who were able to attach and maintain eye contact, develop social relationships (at some level), but still have the other symptoms such as resistance to change, repetitive acts and possible retardation. This is how the Asperger’s, ADHD, ADD, and Kanner’s got under the same umbrella (ASD), but yet are very different, and should still be treated differently. More than likely, the people you know with “autism” are not in Kanner’s classic definition of autism, but under the newer definition of autism. My kid falls under the newer definition of ASD as well.
Now, that is unfortunate. When I googled Dr. Goldberg, whale.com came up as a link and I was unaware of whale.com’s background. But I do know Dr. Goldberg’s background better; to me, he does not belong on a conspiracy site, he is just trying to help my kid, and succeeding where others have failed.
That article needs just as much publicity as Wakefield got. More, really given how many people still unfortunately buy into Wakefield’s false assertions.
Hey Musicat, I do appreciate your OP and link, I don’t want to give you the impression that I am bashing it…to the contrary, it is a great article. I just wish it dug even deeper or was part one of series of articles on autism. But I guess I am just being a little selfish.
Another thing I would like to add is that our family is in a rare situation…we had a good idea of what autism is/was even before our son was born, but we are still learning more since his birth. We also have the opportunity to talk to parents of their autistic sons/daughters about their childhoods, how their doctors advised/treated them, their expectations, etc. Those parents were basically told to institutionalize them (1970s and before), or place them in 24hr. residential care facilities (1970s and onward). Most were told back then they shouldn’t expect any improvement in social and educational skills. These parents are now bitter realizing that improvements could have been made had they been informed to have their kids could have been in Occupational Therapy and Speech & Language Therapy. My wife was told over and over by these parents to do whatever you can for your kid(s) and not sit back and believe what their pediatricians have told them until it is too late.
So, my wife is constantly thinking of things we could do for our kid that would help in any way. She’s read dozens of books, searched the internet for recent researches on autism, considered different courses of treatment (we drew the line to no chelation and hyperbaric chamber), and now she is studying for her Masters degree in Human Services. Our son has OT and S< every week, a strict diet that is protein, vegetables and fruit with less starch intake, avoid most dyes, milk products and other possible allergens…and Dr. Goldberg overseeing our son’s diet and behavior journals. Our son does have his blood drawn quarterly for testing (only if we think it’s necessary)…but he’s used to it now. We’ve been able to cut down most prescription medications (especially the ones with side effects) and his sleep schedule is back on track now, thankfully. Now, my wife is pursuing educational apps on the ipad and also is trying to get grant money for a smart board in his classroom at school. She’s gone above and beyond what most parents do and I am pretty much the stabilizer in our family. I do my share, but remain grounded and question anything that seems out of the ordinary with regards to our son’s treatment. I’ve felt more at ease with Dr. Goldberg than any other doctor we’ve been with…even the doctors before my son’s diagnosis.
I’m sorry that you and your family is going through this.
But I wouldn’t wish for schizophrenia. Childhood-schizophrenia is a scary, debilitating disorder–and the strange thing is that it can result in a child who is just as handicapped as one with autism. There are medications to handle schizophrenia (just as there are medications to handle autism), but there is no cure. And the side-effects are vast.
Structural abnormalities in the brain have been linked to schizophrenia, so it is not just a “software” problem easily extinguished by taking a couple of pills.
One interesting hypothesis that I’ve read is that schizophrenia and autism, while different disorders, may be manifestations of similar prenatal brain trauma. Someone who is really sensitive to this trauma may grow up with autism. Another may be less sensitive or injured and may develop problems later in life–then diagnosed with schizophrenia. It’s an interesting idea–I’m not saying I agree 100% with it. But people who later develop schizophrenia later in life often show “weirdness” in childhood and adolescence. They frequently have disordered personalities that are often confused with high-functioning autism/Asperger’s. The fact that schizophrenia drugs are often used to treat the symptoms of autism signals that the two are not as separable as we’d like to think are.
Correction: who you think is improving your son’s condition. All evidence points to the contrary. You, Sir, are in the worst possible position to be able to independently, scientifically judge improvement or a lack of it. You have hope, but no evidence that would be of the slightest use to a scientific study. You have biases and you appear to be blind to them. It’s a very human failing – we are the easiest people to fool, ourselves.
You are being taken to the cleaners by a snake oil salesman. Join the crowd stampeding to his door, and if you become enamored by this one, there are a million others waiting to take your money and give you false hope.
I’m a parent of an autistic child and *highly *skeptical of Dr. Goldberg. That said, there’s probably 5% of parent population at the company I work at (at least hundreds of active parents) that follow really strict diets and believe it is markedly helpful. It is certainly ancedotal but if your child responds for whatever reason, then it’s probably a good thing or at least not harmful. That said, I have not seen any reason why this might be helpful for my child and have not tried it.
I am not aware of medication that can offset or help autism. There are medications that can address some of the effects of austism such as sleep disorders that my daughter has. Solving her sleep made her much more receptive to therapy and marked improvement. Hell, anyone going from horrible sleep paterns and sleep deprivation (including her parents) should have an improvement in their overall disposition, patience and ability to learn.
…but in other cases of fraudulent treatments, relying upon such may prevent the patient from obtaining reliable medical attention that really does work.
clonidine. It’s a very mild hypertension medicine used for decades with the side effect of causing sleep. wiki: Clonidine - Wikipedia
For us, it has simply been the miracle drug. Every night at 7:30, she gets a mild dose and is generally sound asleep within 60 minutes. She still usually wakes up a night, and she gets a second dose and is back asleep usually 30-60 minutes later. Sometimes if I wake up before she does in the middle of the night, I sneak in a does and she doesn’t wake up Net net, about 10 hours of good sleep for her every night.
(Contrasted with going to bed around 8:30 every night and going to sleep anywhere from 8:30 to midnight, and then waking up from 2-5 hours about 4 times per week. It was a nightmare we had for about 5 years.)
If you have the opportunity, check out a sleep clinic at the nearest children’s hospital.
When I say things have improved, they have improved through thorough two-way questioning and discussions on a monthly basis with Dr. Goldberg. The change of diet and the reduction of medication (which our long-term psychiatrist is on board with) has helped my son’s overall demeanor, his sleep schedule (a solid 9 hour period now vs. 2-3 hour naps punctuated with hyperactivity and wall pounding for an hour or two). What our kid’s psychiatrist has been trying to solve for the last 4 or 5 years has been helped by the advice of Dr. Goldberg. Many of the prescriptions our psych has prescribed (clonidine included) seemed to be counteractive to what they were meant to do. We are finally DOWN to 2mg of intuniv (down from 4mg) and 10mg (lightest dose) of lexapro. The restricted diet which is all from Goldberg and not our psych (who isn’t a dietician anyways) is not a bizarre diet at all…meat, vegetables, some fruit (trying to keep the sugar intake low, and organic if you are eating the skin of the fruit/vegetable) and restricted starches (potato, white rice, some types of bread), but no dairy (soy is ok in limited amounts) amounts to a relative healthy diet. Avoid dyes in food and drinks. After all, Goldberg is pediatrician. A mild probiotic and an anti-fungal rounds out the intake for my son.
Snake oil? Goldberg doesn’t sell anything like that…I can get all of this stuff from my local Supertarget store. Last time I checked, Goldberg doesn’t get any kickbacks from Target. Ok, I didn’t check with Target, but I highly doubt he is.
Also, myy wife’s health insurance recognizes Goldberg as a pediatrician (UCLA schooled) instead of what you claim him to be, and insurance pays their share of costs for our appointments. But rather than drive to Tarzana every month (about 100 miles one-way), we sometimes do phone consults which insurance routinely does not pay for. I’ll have to ask the wife (it’s her insurance) how much that amounts to…but it’s relatively the same cost as any other pediatrician appointment.
It works for us…simple as that.
I don’t think I came off as the town-cryer announcing that there is a cure for autism. I just think there is an ebb and flow of how we as a country are defining autism and what can be done about it. We are still pioneers when it comes to fully understanding it.
Thank you! Please keep voting!
There is nothing dangerous or fraudulent here…I was the skeptic of our family and it took some results without harm to my son to win me over.
It’s hard to put a price on getting a good night’s sleep…you know that and I do too. You go with what works. The money spent on Goldberg thus far is a bargain for the sleep our WHOLE family gets. I can’t make it any simpler than that.
A healthier kid, that is well-rested and well-fed should be able to increase his ability to learn, autistic or not. That is all.
If your doctor enabled a good nights sleep for your child and family, that is success right there. It is really hard to explain to someone who has not experienced it the horrible effect of terrible sleep on the whole family. It’s like the whole family has permanent jet lag.
Thank you. I was wondering how to say that - adult-schizophrenia is not better - and like autism, there are people whom medication doesn’t help. In an effort to make a point about autism, Terr repeated the very mistake by minimizing another debilitating, horrifying disease.
I have an adult relative with schizophrenia and another adult relative with autism. Neither is independent. But my cousin with autism is fairly happy and peaceful. That cannot be said for my aunt, who is a danger to herself and others.
