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Autism Treatment: Tired of the Square Peg World

Square_peg_in_round_hole_2 By Katie Wright

Autism, for at least half of the children, is a medical disease. Dr. Landa has received millions of dollars to essentially replicate the same early behavioral intervention work on moderately to high functioning kids. Landa recently completed a very expensive study on whether pivotal response training, another form of behavioral therapy, was a more effective than the traditional form of behavioral intervention, ABA. Not really.

In 2005 I was desperate. Christian had regressed into severe autism in a matter of months. I dreaded going to sleep at night because Christian would know fewer words the next day. He was beginning to fail to recognize family members. Christian was in a high quality behavioral early intervention for months but was only getting worse. No one prepares families for this. We knew he was so sick but almost no one believed us or took our concerns seriously.

My mom had a connection to Kennedy Krieger. She had heard Dr. Rebecca Landa would be in town soon and asked if Dr. Landa would visit Christian for a consult. Dr. Landa graciously agreed.

So Dr. Landa arrived on our doorstep with a video machine, tapes and a sheaf of published studies under her arms. She was very friendly. I introduced Landa to Christian who by now was terrified of all strangers, had horrible dark circles under his eyes, a red rash all over his face and had loose bowel movements about every hour. No, I never said it was a pretty picture and yes, Landa was very kind to come to our home. However, looking back it could not have been more obvious, even in 2005 that Christian had every single symptom of  PANDAS, severe allergies and GI disease, hallmarks of regressive autism, and desperately needed biomedical, not just behavioral, interventions.  No sick child makes progress in early behavioral intervention without adequately and comprehensively addressing their medical issues first.

I had just read Karyn Seruossi’s book on the subject and tried to engage Landa in these issues relevant to Christian. Landa was unfamiliar with this work. Then I told her about all the great ABA therapy we were doing with Christian. I was sitting through about 30 hours a week of therapy so I could learn how to engage Christian every waking moment of the day. We practiced ABA, speech therapy exercises, RDI and floortime. My husband and I did it all with Christian every minute he was not with a therapist. But still Christian was losing words, screaming all night…

Dr. Landa was sympathetic but offered almost no insight or advice.

She did however pop in a video of herself teaching pupils at her school, showing my Mom what amazing progress she was making with other autistic kids in her ASD program. I asked if she had children like Christian, kids who regressed, kids who were not progressing? From her response it sounded like Landa had some students who plateaued but it was clear to me she had little familiarity w/ children like mine.  I was frustrated because Christian’s situation was far from unique, even in 2005.

My Mom was growing impatient as well. She complimented Dr. Landa on her school, her videos and her behavioral early intervention program but kept trying to bring the discussion back to Christian. We had asked Landa to our home to give us her insights into Christian, not for a blow-by-blow account of her professional accomplishments and her toddler research program.

There was much talk about “the window.” How I hate “the window” talk! After age 5 what we supposed to do? Give up on our kids and call it a day? At that time Christian was only 3 and I hated the “window” talk even then. Of course we were doing everything imaginable to help him! Landa spoke about how we could still change the course of Christian’s autism with intensive early intervention. I said, I know, I know, I know! That is what we are doing every single minute of the day but why isn’t it working? Why is he still losing words? What do you think about his face and his GI problems?

It wasn’t fair for me to expect a psychologist to solve Christian’s GI problems but Landa should have known something, anything, on this subject. Instead Landa continued to try to engage my mother in more discussions of her grant projects.

A moment later Christian had another explosive bowel movement and started to scream. The acid burned his skin. I took him and ran away as Landa continued to chat with my Mom. Now I was both desperate and angry. My son was fighting for his life and Dr. Landa was not providing us with any insight at all. Instead she was just chatting about her academic accomplishments. My Mom knew I had really had it and followed me out of the kitchen. I asked my Mom to tell Landa to leave and leave now. Christian’s autism wasn’t Dr. Landa’s fault.  I was irrationally angry with her because I was terrified. What would we do now?  How could this expert know so little? If she knew nothing about helping kids like me why wasn’t Landa planning to attend a DAN! Conference like me?

Five minutes later I heard a car door slam and I felt complete hopelessness.

OK, fast forward a year and we met with Dr. Doreen Grampsheesh. I knew Ivor Lovass had trained her. However, I wanted to meet Dr. Grampsheesh because I had heard that she not just an expert in behavioral interventions but ALSO highly knowledgeable about the biomedical aspects of ASD- ESPECIALLY as they had changed over the past 2 decades of her career.  Doreen understood that autism, as she experienced it in her work with Lovass 25 years ago, was not the autism she was seeing today. The children were sicker and regressing at an alarming rate. Finally a psychologist who got it! Why didn’t Landa know anything about this?

Behavioral interventions alone were not enough for kids like mine. Right away Dr. Grampsheesh understood why Christian was not progressing.  We talked about his terrible allergies, his broken immune system, the perpetual strep, cellutis, the pneumonia, the GI disease and bad headaches as well. She referred me to doctors who really knew what was going on with children like mine. Dr. Grampsheesh made a real effort to connect with Christian. She did not sit in a chair talking about her research, showing videos of herself. Grampsheeh watched Christian closely, following him around the room, sitting with him playing, trying to engage him. Grampsheesh focused on my child, the whole child.

So please no more spending millions and millions studying minor variations of the same behavioral early intervention. We know it works with moderately to high functioning healthy kids. Every child needs early intervention; we get it, no question. But why aren’t behavioral researchers working on research with clinicians in the biomedical community, and by that I do not mean by prescribing risperdal. If psychologists are going to treat kids they need to learn about and treatments for GI disease, severe food allergies, signs of mito dysfunction, autoimmune dysfunction and yes adverse vaccine reactions. No more hiding from these issues or passing the buck to clueless pediatricians.

During a recent NIH ASD conference Dr. Sue Swedo repeatedly praised all the Dr. Landas of the psych world. Dr. Landa acknowledged that a % of kids were not responding to early interventions and those kids “kept her up at night.” Instead of staying awake at night go to ARI, AutismOne or NAA conference and actually learn more about our children’s biomedical issues! Learn about how to help them.

I tried to follow up with Dr. Swedo on the issue of kids who do not progress. I e-mailed Dr. Swedo information about regressive autism and its co-occurring and debilitating medical problems. I invited Swedo to attend a biomedical conference. I told her that there are about 6 conferences a year and there is always one nearby her DC offices. I suggested Swedo get to know the clinician specialists, like Dr. Ken Bock and Dr. Anju Usman. These doctors work with the most severe, sickest and complex ASD kids. I offered to introduce her to families in the community.

No response, no response, no response.

It is tragic that our public servants care so little and are so unresponsive, so unwilling to engage with the community they purport to serve.

Katie Wright is Contributing Editor to Age of Autism.

 

Comments

Nicole Beurkens

I completely agree with you, Katie! As a psychologist it pains me that so many of my colleagues are uneducated about these issues. I cannot conceive of how I would do my job effectively if I didn't consider the physiological health and wellness of the child as a primary factor. So many of the children/teens at our clinic need to have their health issues addressed first so they can be in a better position to learn, communicate, and relate. I applaud you for your efforts to build awareness in this area, and please let me know if there is anything I can do to assist. Perhaps we need to put together a training webinar or something for psychologists - a "primer" on what to look for when these kids present to their offices. Just thinking out loud...

Nicole Beurkens
www.horizonsdrc.com

Eileen Nicole Simon

Katie, and anyone else still following these comments:

Please read a paper by Dr. Seymour Kety published back in 1962,
Kety SS. Regional neurochemistry and its application to brain function. Bull N Y Acad Med. 1962 Dec;38:799-812. Online free at
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1804882/?tool=pubmed

Look at figure 2 on p802 (p4 of the pdf). This is an autoradiogram picture made from a slice of cat brain 60 seconds following injection of a radioactive tracer.

The picture shows that circulation to nuclei in the auditory pathway is higher than in any other area of the brain. High blood flow in the auditory system means that anything that gets into the circulation is likely to have its first and most serious effect on the auditory system.

"Leaky gut" may allow metabolites into the circulation of people with impaired GI function. Also two or more factors can compound the effect on this area of high circulation in the brain. Much more can be said, but that's enough for now.

Dr. Kety's research on cerebral circulation is seminal for understanding brain function and brain vulnerabilities. Autism will only be understood when the brain impairment that prevents normal language development is discovered. The auditory system is a reasonable starting point, and because of its high circulation is clearly susceptible to damage from many of autism's known etiologies.

If anyone wants to claim expertise in autism, they must be able to think in terms of systems in the brain and why they might be vulnerable to many insults.

Donna

Hi Katie:

Christian's regression into autism sounds so much like Doug Flutie's son who actually has a form of autism called Childhood Disintegrative Disorder. His son, like Christian, was completely typical up until almost age three and then I have heard them say he received vaccines and the regression after that was stunning.

I don't think Landau-Kleffner but CDD. I was wondering your thoughts on this.

As far as the majority of ABA providers being clueless to biomed and their treatments, I completely agree. Most BCBA's and others in the field have one track minds like Dr. Landa. CARD, one the other hand, is one company that really has done a great service to kids by looking at the whole child. None of these money hungry ABA centers will ever go down the road of investigating biomed treatments. It sadly just does not interest them.

Katie Wright

Thank you again for all your support it is greatly appreciated.
I don't want to leave the impression that I am anti-ABA. I know it has helped the majority of kids and when my child was healthy it helped him as well. However, I am tried of psychologists, who choose to know nothing about autism the disease, dominating the treatment field.

ABA experts like Doreen Grampsheeh are few and far between. Meanwhile psychologists like Dr. Landa make no effort to attend biomedical conferences or learn why so many children are not making progress. It isn't OK that Landas keep spending our $ to do the same behavioral intervention work 50x while doing nothing to address the needs of sick children.

Sarah

The thing is we don't have to give over control of our kids health to these people. Rather than empower them, let's empower ourselves. Let's focus our energy on working with doctors and alternative medicine practitioners who are board. Also, let's work with Lee Silsby and other nutritional companies who get it and make healing our kids a priority.

Instead of functioning as separate entities, maybe these autism practitioners, centers, researchers and companies can form a health care alliance to heal autism where they can pool their resources and share with eachother the latest information and research and best practices. So they can better guide families.

Jennifer S.

Katie,

You are in so many ways lucky - you've had access to the best that money can buy, and visits from the "best" in the field. But it must be so painful to know that the experts have no answers, none of them. Your dad told boston.com:

Q. What are the prospects for your grandchild as he grows up?

Bob: I don’t know how smart he is. He just doesn’t give us clear answers.

___

Have you looked into Landau-Kleffner Syndrome? The symptoms you describe, where your son lost language everyday are consistent with this.

Jen

I can relate to your frustrating experience. In Mass. no group of so called experts are worse than the folks at The New England Center For Children. They actually forbid you to consider biomed treatments and no one is welcome there who even considers it. They make that very clear. Ignorance and complete disregard for the well being of kids on the spectrum is alive and well in so many self proclaimed ABA "experts." Some of them are truly horrible, horrible individuals.

tiredmom

I agree with you completely that this is a medical disorder. My son also continued to regress despite an excellent ABA program. I agree with other posters that ABA is overated and not necessarily such a great thing. I have heard several stories of children who made real progress in ABA in their early years but as adults were still severely dependent, unable to have jobs and sometimes developed severe bowel problems.

Still, while I think the biomedical community is going in the right direction by looking at things like bowel issues and inflammation, I think that they generally are not successful enough. There have been many success stories but there are also a large percentage of children who have not responded at all. Alternative doctors are not really accountable to anyone, their success is not evaluated and they do not publicize their success rates which are often very low. Perhaps there would be more respect for them if they were more suucessful with our children (Well, doctors like Dr. Landa might never respect them because it does not seem like she cares enough.) Perhaps if more research money was thrown their way they could find the best treatments for our children rather than throwing every supplement under the sun at them.

Thank you again Katie for highlighting that this is a medical condition and for putting so much emphasis on regression which the media ignores.

Janet S

heard this once, and it is so true: "You can't educate a stomach-ache."

Anne McElroy Dachel


Katie,

Your story is but one example of the horrible response of mainstream medicine to this crisis. We've had 2 decades of doctors knowing nothing for sure about autism. There's been no known cause or cure. They've promoted early diagnosing, but suddenly there's the claims that we shouldn't be screening so soon.

My greatest criticism has been their ridiculous claim that all the autism is because THEY are suddenly better at diagnosing.

What's really wrong is their abysmal lack of compassion over the suffering of so many sick kids. They pretend that autism is some mysterious behavioral disorder. They don't like to talk about the GI problems, the seizures, the allergies, or the sleep disorders.

A hundred years from now, if autism hasn't buried us, we'll look back at the emergence of the autism epidemic and the failure of the medical community to do anything as greatest disgrace in medical history.

Anne Dachel, Media

Heidi N

My children were recovered with no ABA, and no other behavioral therapy either. I researched the Internet about autism, and it was very clear that it's a medical problem. Thus, I tried only biomed to see if that would work, and it did. My kids starting improving in speech right away. They need immune support, less toxins, and gobs more nutrition. I think that biomed should be foremost because once they are well, you don't need anything else. Well, at least a lot of them. I know there are some that have cerebral or stroke-type problems where more complex treatments are needed. Thus, focusing on the main things, their immune system is key.

Carolyn M

Carmen

I agree with you that ABA/VB is not for ALL children.

However, I must disagree with you regarding removing ABA from the schools. My daughter learns best with ABA/VB - other methods DO NOT WORK with her. To remove ABA from all schools would mean that my daughter would make NO PROGRESS WHATSOEVER.

It must also be noted that not all ABA is the same - and bad ABA is indeed worse than no ABA at all. If a drill is done over and over (25 times in a row seems to be the magic number for some of these therapists), with little to no reinforcement, and regardless of whether the child gives the correct answer independently then that is practically guaranteed to cause regression. I know this through experience; my daughter has had teachers who used extremely poor quality ABA and she has had teachers who use very good ABA. With the bad teachers she did suffer regression. With the good teachers that she now has, she mastered almost all of the goals on her last IEP (and the goals were not easy, they were ones that would challenge her). It should also be noted that my daughter's gastrointestinal dysfunction, mitochondrial dysfunction, and allergies are (and have been) being treated.

Children should be instructed in the manner in which they each (as individuals) learn best. No one method is going to work for all of our children.

Sarah

Carolyn said "that maladaptive behaviors are frequently caused by pain"

Dr Wakefield mentioned this at the Brandeis lecture I attended in April. He said when a child with autism throws himself over the arm of a couch, presses on his stomach or headbangs. He/she is communicating pain either in the GI or in the head. Wakefield described horribly inflammed GIs in the kids he examined.

I imagine inflammation is what is causing the pain. Colitis in the gut and neuroinflammation in the brain.

My son would go upside down on the couch with his head on the cushion or he'd press my hand against his forehead I think to relieve pain. He also kicks of his shoes all the time as if his feet are hot (neuralgia?). His ear holding I think is also a pain response.

Carmen

ABA can actually hurt a child and make them regress. The research is shoddy at best and even if you take the numbers given by the research, only 47% of children benefit, so the rest can regress or even worse, end up with PTSD. Michelle Dawson just presented at Marcus Autism Center and even she agreed that the research was shoddy and that this can be hurting children. ABA therapy has been used on children with disabilities in our schools since 1997 and they have the lowest graduation rate of all subgroups. ABA has been used since the 70's and individuals with autism have extremely high unemployment rates. IMO, we need to get over this ABA kick and go on to other methods and that includes addressing the medical needs. As long as we push ABA our children will not get better. One only needs to review the research to realize ABA is NOT working.

Allie90

We too visited Kennedy Krieger with a very sick child, only to be told it was all behavior issues. The time and dollars wasted, not to mention the toll on our son's life.

After trying to treat PANDAS with homeopathic medicine, herbs, antibiotics, IVIG, finally this last month, our son had his tonsils taken out.
A wise DR kept saying that they hold so much infection, and tonsils sit at the base of the brain. got to take them out. I fought it for a year but with no long term results with the antibiotics.

Its still too soon to say how things will go, but I am hoping this is the final chapter of PANDAS and continuing to use supportive remedies for now. Looking at my son each day with new eyes and hope for a brighter future.

kelly

Katie, you are still my rock star, you ALWAYS know how to sum it up so perfectly, THANK YOU. God Bless you & Christian!

Carolyn M

Many behaviorists are apparently being taught that biomedical interventions are "pseudoscience" and possibly dangerous. One book that I have read refers to the gf/cf diet as a "placebo" and advises parents to test its effectiveness by not informing the child's teachers of the fact that he/she is on the diet, and waiting to see whether the teachers notice a difference. A little thought would lead them to the conclusion that this course of action is impractical - the teachers have to be informed so that they can help keep the child away from food that is not allowed on this diet. Many behaviorists may also believe that supplements are unnecessary and possibly harmful, and that chelation is very dangerous.

It is also my experience that some behaviorists do not acknowledge that maladaptive behaviors are frequently caused by pain - and that a behavior plan will NOT be effective until the cause of the pain has been addressed. They may also not recognize pain when they actually see it in one of our children. It appears to me that they do not believe that our children actually CAN be sick.

There are some exceptions - those behaviorists who are part of Defeat Autism Now! as well as those others who have seen children improve when the children have been treated for their underlying medical conditions.

We need to get autism out of the DSM completely. It appears to me that the only thing psychologists want to do is prescribe behavior therapy or drugs such as Risperdal. While ABA/VB can help a large number of children with autism, our children need treatment of their various medical conditions - gastrointestinal dysfunction, mitochondrial dysfunction, immune system dysfunction, etc. We need more research into these areas, so that more effective treatments can be developed and can be used for our children. Also, parents need to be respected and listened to by standard, conventional medical personnel - we did not lose our intelligence or analytical abilities by virtue of becoming parents. Nor do standard, conventional medical personnel have a monopoly on knowledge of science.

Sylvia

I agree with Katie 100%

Dr. Swedo was one of the speakers at the 2006 Environmental Toxixocology Conference at the MIND Institute:
http://www.ucdmc.ucdavis.edu/mindinstitute/videos/video_tox.html

Scroll down to the videos of November 2, 2006, and you will see that her co-presenters were Dr. Judy Van De Water, Dr. Jill James, Dr. Mady Hornig, Dr. Isaac Pessah, and YES, even a well respected DAN! doctor, Dr. John Green!

I was there in the audience nearly 5 years ago, and felt very hopeful at the time that the ball was finally getting rolling and biomedical treatments would begin to get recognition. But money continues be thrown at just about everything EXCEPT the study of biomedical research. As parents we have to DEMAND that this change.

JenB

Thanks for pointing out the avoided bigger picture!

I can't help but feeling like one lesson the mainstream should be learning from our kids is the need to start looking at the environmental roots or factors in most (all?) "psychiatric" disorders. The canaries stop singing and they are deemed genetically deficient for not thriving in the mine and are given drugs and/or Applied Behavioral Singing therapy. Adults or teens regress, must also be genetically deficient, more drugs and counseling. I really just want to get out of the mine.

Concerned Mom

"My Mom was growing impatient as well. She complimented Dr. Landa on her school, her videos and her behavioral early intervention program but kept trying to bring the discussion back to Christian. We had asked Landa to our home to give us her insights into Christian, not for a blow-by-blow account of her professional accomplishments and her toddler research program."

I'm guessing Dr. Landa was more interested in presenting her work to your mom in order to impress her so your parents would give her a big, fat grant to further fund her program. Dr. Landa used your son and your family's situation as a foot in the door to get access to your parents' wallet. That totally sucks and I'm sorry that happened to you and your son.

Becky Estepp

I often wonder whereis the intellectual curiosity of doctors like Landa and Swedo? Surely, they have heard stories of regression and medical issues with children with ASD for years now. Are they simply afraid to investigate these concerns? Don't they want to know what happened to children like Christian? Did these doctors go to medical and grad school to be only concerned with their one area of expertise? Obviously, many times the answer is yes. Which is a shame for a generation of sick children. Thank you for writing about your experience Katie. It validates what many of us have been through. But it is still frustrating and maddening. It simply must change.

Sarah

Hi Katie,

"Behavioral interventions are not enough".. you are so right!

After reading about how ill Christian is I had to write.The fact that our kids have these huge medical issues which are not being addressed makes me crazy. I feel we parents just have to take the bull by the horns on this.

I have no patience for these so called "experts". You can't therapize away brain and GI inflammation for goodness sakes. How can they be so blind to the pain our kids are in?

As a parent, I feel I don't have time to wait for them to figure it out. Childhood is a precious time and I want my son to function as best he can so he can enjoy some semblance of it.

Like many autism parents I have buried myself into researching what's causing our kids medical issues. I think the most prevalent problem is chronic inflammation in the gut and brain that is impeding our kids abilty to function normally.

If we address inflammation and somehow quell it, perhaps our kids with be able to function better.

What I've done is made a list of natural, non-toxic alternatives that work to address neuro-inflammation. I hope these remedies can help Christian and other chldren.

Anti-inflammatories:

Lutimax (luteolin) http://www.lutimax.com/
Enhansa(curcumin) by Lee Silsby
Boswellia (aka Indian Frankencense)http://vitamin-health-online.co.uk/ayurvedic-herbs/boswellia-ayurve...
Pineapple juice
coconut oil
Omega 3

Anti-viral/anti-bacterial/anti-protazoan/anti-yeast

Lauricdin http://www.lauricidin.com/

B vitamins

Lately, I've been researching camels milk which, according to some autism parents is a great immune booster/ modulator. Unfortunately it is not yet sold in the US unless you contact the camel farms directly.

Here's more info:

http://www.huffingtonpost.com/philippa-young/camel-milk-the-biggest-hu_b_773016.html

http://camelmilkusa.com/

The answers are out there. If the medical community isn't going to move forward with us then they had better get out of our way.

Benedetta


The majority of people do not understand the whole DSM thing.

DSM is a psych Evaluation of the after effects of a brian injury.

That is all a DSM is. Just fancy stuff that comes in and looks at what part of the brain was damaged, and how it has affected the individual, maybe makes some suggestions on how to shore up the damage.

SO what happens when this brain injury is happening right in front of their noses? Psychs should be calling the ambulence. I can sort of understand the psychs - they are not medical trained - what I don't understand is the neurologist that are acting like psychologists!!!!

And then there are rhuematologists they should be on top of this but they - why are they clueless????

And then there are the psychiarists now there is a marriage of psychologist and actual medical science that needs a divorce.

Then there are the allergists, and they know a lot but there sure is a lot they don't know.

This is also not new. Oh, no, this has been going on a long time --- for just my family alone since 1981.
Longer for others - back in the 70s.
And since there is truly nothing new under the sun according to the Bible, and I am average joe in everything else. HOW CAN I BE PART OF 1 PERCENT OF THE POPULATION????

candace

i always had the same questions why is my toddler suddenly so sick!!!! no one could tell me why we were simply tx. the behav..so i had to research myself..i took him off milk..put him on papaya enzyme..detox with epsom salt baths..and watched for strep..which we all get at least 4xs a year..now..selenium and zinc..b6/b12..thuja...flax..olive oil...he eats no meat..he is 13 now...and pretty typical..i am a rn..so i knew my child was bio-sick its just plain science 101..got tired of phys. not tx him...oh oxygen water helped alot too..so for 12 yrs now ive been recovering him myself..we just lost his dad age 47 to a agressive lung cancer..we used alternative tx. for him he did really well..the conventional tx. prob lowered his immune system that we lost him apr. 29th 2011..on route trying to come see his son our son justin..so now i will finish raising him myself..we have to keep going..all of us its up to us to save our children......candace

S

Research priorities are influenced by how Autism is issued in the DSM. Until we have categories in the DSM that list Autism with Seizures, Autism with GI problems, Autism with Mitochondrial Disorder etc etc these things will never be screened for and it will remain on the parents to figure it all out themselves and to beg for specialist appointments.

And the newest DSM calculations lumping all of Autism as one will only make it worse. Based on that definition we will continue to get MRI studies on people with Aspergers that extrapolate their conclusions to the entire Autism Spectrum and GFCF studies that exclude Autistic kids with GI disorders then says GFCF is not helpful in Autism (Thanks a lot Univ. of Rochester. Parents of healthy Autistic kids were never the ones who claimed their children benefit from diet in the first place.).

Charlie

Approximately 10 years ago, our DAN! Provider was scheduled to appear on a local television health information program with the topic being "treatments for autism". Also scheduled to appear on the same program, was a prominent South Florida neurologist. Once the neurologist learned he would be appearing with a DAN! provider, he demanded the DAN! Provider be removed from the program and when that request was denied, he withdrew himself. This is the same neurologist who told me that he didn't recommend the GFCF Diet as there was no proof it worked (my child responded amazingly well to it) and that the rise in the documented number of autism cases in South Florida was essentially because more kids were being diagnosed by his recently opened facility. Even after all these years of numerous reports of children getting better and even recovering (like mine did) with bioligical interventions, I'm sure this neurologist is still protecting "his turf" by ignoring anything other than behavorial (or drug) therapy. Where is the compassion for our children? Where is the scientific mind to consider something else which could possible help our damaged children? Shame on these narrow minded so called autism experts.

Donna L.

Amen, Katie! These same thoughts have infuriated me for over ten years now. You just summed it all up perfectly.

Holly M.

In 2003, my 3rd and 4th daughters were in the Kennedy Krieger siblings study. My son had autism and so did my 3rd daughter. We did not vaccinate my 4th and she never developed autism. Over and over, with no avail, I tried to bring this to their attention especially since my 3rd daughter had 8 seizures after her 4-month old shots and was autistic by 5-months old. We pulled out of the study when Kennedy Kreiger publically disputed the vaccine autism connection and stated that Thimerosal was removed from vaccines in 1999.

Beth

"Listen to the parents."

We all know that history will judge harshly the people involved with prolonging the autism epidemic from the MD's to the public health folks to hypnotic reporters.

What is so tragic is that the fix is and has always been so simple - to listen to the parents.

I recall an image from the Green our Vaccines rally of an older, gray haired mom who carried a sign that read something like "Vaccines & Autism - a 20-year shame..your son today mine in 1989" or something like that.

If only. All of us. Had listened to her.

There was no internet back then, but there is today. And it's time for all to listen to the parents, so please parents keep talking, blogging, posting.

Julie Leonardo

Oh Katie, you are so right. They don't respond, probably because treating Autism as medical is just so controversial. They don't want to touch it. It would sully their reputations. So as much as they may "care about our kids" they don't care more about them than their own reputations. Sigh! This world just sucks.

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