Children's Of Boston Plays it Safe With Autism Research.
By Katie Wright
In writing about Dr. Hanson’s article for Children’s Hospital of Boston, “Is Autism Really on the Rise?" (HERE) my intention was to draw attention to the serious disconnect between how researchers perceive autism and how our children experience autism. Nowhere is this disconnect more apparent than in research priorities. All too often we see autism research centers conducting almost entirely genetic/ face processing orientated autism research which hugely diverges from the actual research and treatment needs of ASD children, many of whom are chronically ill and have no place to go for medical treatment.
Matt Cyr of CHB wrote that I implied that CHB conducts the research they do for financial gain. I never said that and do not believe that to be the case. I see no nefarious motivations behind the institution’s dated and irresponsible autism research agenda. I think CHB is simply doing research that is safe, noncontroversial and relatively easy to get funded and published. However, this strategy has not served our children.
Let’s look at research CHB is currently conducting:
- Spatial Processing, why autistic kids like electronic media
- Face Processing
- Let’s Face It (more face gazing)
- 88 Middle Eastern Families and their genetic clues to autism
- Tuberous Sclerosis face processing vs regular autism and face processing
I wish CHB’s researchers and physicians had attended the most recent National Association of Autism conference. Unlike research hospitals, the NAA is operated by parents and parent physicians who live with and treat autistic children everyday. Here is what CHB missed:
- Dr. Julie Buckley (also and ASD parent) “Treating Autism as a Medical Disease”
- Dr. Theo Theoharides, “Autism as an Emerging Neuroimmune Disorder” – fascinating and treatment orientated
- Dr. Martha Herbert, “Autism as a Chronic Active, Biological Process”
- Dr. Dan Rossignol (also an ASD parent), “ Seizures and Autism” why the overlap and how to treat the problem
- Julie Matthews, M.A., “Dietary Interventions”- offering and advanced understanding of nutrition, food choices and essential nutrients to improve health and relieve many ASD symptoms
This is the kind of research that will help our children and that autism community really wants to see funded. Doesn’t that beat spending millions studying 88 Middle Eastern families?
We need help for our children today. We also need targeted causation research exploring environmental triggers. Approaching autism as a brain and or genetic disorder will not yield the causation evidence we need. Autism’s exponential increase is not genetically driven. Too many children are developing normally and then rapidly regress into an acquired form of this disease, much like HIV. HIV researchers did not spend all their resources studying who was more genetically prone to acquire HIV. No, they quickly isolated the trigger, researched how the disease affects the body and brain and focused on a wide array of treatment interventions.
The researchers at CHB surely work hard, doing so for modest wages and want to help the autism community. Unfortunately their research paradigm is at least a decade out of date. Autism in 2009 is not mainly a heritable brain disorder, characterized mainly by social deficits. I wish! Autism today is a total body disease, one that affects the brain, the GI system, the immune system, liver and kidney functioning…CHB doctors must make an effort to educate themselves about the immediate and profound needs of our children and the need for more biomedical interventions. How many parents with a severely ASD child with gut disease does CHB have on its board? How many parents of ASD kids who had experienced adverse reactions to multiple vaccines and then regressed into autism are on the board? Has CHB spent time with the national autism community, attending family conferences, learning about the complex medical needs of so many kids?
Have any members of the CHB attended a DAN! Conference this year? Or Autism One?
These conferences are organized and attended by families, researchers and physicians. They present an excellent opportunity to network, get acquainted with the most current causation, environmental and treatment research and possibly serve autistic children more effectively. What is the downside? Autism Speaks recently held an excellent seminar for pediatric GIs regarding treating kids in the spectrum. Did anyone from CHB attend? CHB needs to make researching and treating our kids’ autism and their co-morbid issues as important as tuberous sclerosis. I know, I know, researchers argue that by studying these rare diseases, they will learn more about the autism’s pathways. I’m sorry but the majority of ASD families do not agree. The overlap between these extremely rare chromosomal disorders and autism is slim. It would be more productive to study children with traumatic brain injuries. Now that is a population that has much in common with autism.
After my piece was in AoA I heard from so many Boston area Moms and Dads who called CHB seeking help for their ASD child’s GI problems. Over and over again they waited months for an appointment and were told that outside of diagnostics no treatment or medical services were available.
A Mom wrote to me, “I took my son to CHB because they were supposed to be great…we waited 10 months for an appointment only to leave there devastated.”
Another area Dad of a sick kid with autism wrote: “ we don’t take our son to CHB anymore…for inflammatory bowel disease, autoimmunity problems, serious food allergies…because the facility offers nothing to us but genetic tests.”
Another are Dad described CHB’s “doctrine” as “obsolete.” His family left CHB feeling like they were on their own.
A parent of a 13 yr old with autism wrote me that looking at CHB’s website was a flashback to the autism science a decade ago when her son was diagnosed there.
Certainly CHB can do better than this. Certainly Dr. Hanson and the rest of CHB want to do better than this.
Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.
Hi Katie-an older post I know but if you think Vinnie Strully would ever allow anyone from his school attend a confernece regarding biomed you are dreaming. NECC spends large amount of time making sure no one buys into biomed and that all of their parents are pro vaccine. They are a school that makes my skin crawl and the arrogance there is unreal. A parent has to be insane to hand their child over to those monsters.
Posted by: Liz | December 30, 2010 at 11:47 AM
Parents who place their hope in government sponsored institutions will get only more of the same bitter and harmful medicine that got them into this mess in the first place. The same is true for all degenerative diseases that are caused by poisons and poor nutrition.
The medical establishment has lost so much credibility that it probably didn't deserve in the first place.
WAPF offers nutritional advice to all who would reclaim their health. Instead of relying on scientifically dubious methods (vaccinations) to improve the immune system, thought to be centered in the digestive tract, they are creating a network of people, lay and professionals alike, who help themselves and their families by applying the nutritional wisdom of traditional peoples.
Processed foods, sugar and flour, additives, preservatives, colorings and taste enhancers should all be shunned in favor of traditionally prepared, nutrient-dense meals that promote healing.
Dunkin' Donuts serves nutritional poison, is it any wonder they support research that leads far away from one of the biggest co-factors of continued disease?
Anita
Posted by: Anita Reusch | November 26, 2009 at 03:56 AM
Thank you for writing this Katie and for continuing to speak out on behalf of our kids. It is such an insult to our dear dear children that this kind of research is being done when our kids are suffering and truly need real research to help them. DAN! has done a lot to help our kids but more research is needed to fine-tune treatments, learn which treatments should be used for which kids, to find more gut treatments, etc. We would have much happier children if someone were to put the money towards this real research in the next 2-3 years.
Deep down I feel like mainstream medicine just doesn't care about our children, that they have written them off. They would rather dehumanize them by painting them as people who cannot even recognize emotions in others than make any true attempt to understand them. Many of us parents know that our children are actually super sensitive to facial expressions and human emotion.
Personally, I don't want to wait until our kids grow up and society is faced with huge numbers of ASD adults. I don't think society will do much to help to help them and society can ignore them easily since most of them can't talk. Many won't have enough communication skills to beg on the street. Our kids need more solutions now! I pray every day that something will change, a discovery will be made or a hero will come along.
Posted by: sadandheartbroken | November 25, 2009 at 09:56 PM
Thank you Katie. Keeping poking the eyes of these genetics only giants. They need to change their focus a bit.
Posted by: Lisa@taca | November 25, 2009 at 07:34 PM
http://www.necc.org/about/board.asp
Regarding NECC-I say contact every single person on here and let them know (particularly the pathetic Dunkin' Donuts man) that you will be spreading the word about their horrible attitude towards further research into biomed and vaccine connection to autism. Oh, and I'm done going to Dunkin' Donuts knowing they back these Ass Wipes!!
Posted by: Jamie | November 25, 2009 at 02:52 PM
One more thing that the psychologist told us yesterday.
My son with his abiltiy in spacial what ever could be an architect????
Well what do you know, I will try to get the money together and get him into the University to do just that.
Of course he will have to take his plastic figures of Batman, Star Wars, Dragon Ball Z, Final fantasy that he spends a lot of his spare time lining up in neat rolls, with him.
Posted by: Benedetta | November 25, 2009 at 08:51 AM
Anne, one glaring example is Pennsylvania. They just did an autism census, which return some horrifying data:
* In 2005, more than 1,400 Pennsylvania adults were living with autism - just over seven percent of the total autism population in the state.
* That number is expected to increase by 179 percent to more than 3,800 in 2010 and to more than 10,000 by 2015
http://tinyurl.com/y8z5wa2
How big is PA and what will those thousands and thousands of children becoming adults and descending on the welfare system do to the state’s economy, housing, social services?
But who cares, lets look at how they process facial expressions.
Posted by: Natasa | November 25, 2009 at 03:16 AM
I have been dumbfounded by the lack of interest shown in regards to autism by our government. It seems to be as if the children with autism have been sent to the basement to be hidden away, but they are beginning to break through the floor boards and the door to the upstairs.
Maybe, we are being submitted to what Naomi Klein's book "The Shock Doctrine", would call "shock and awe." We are reduced to merely surviving and thus the pharmaceutical companies and others have a free reign to run rough shot over us all.
God help us, but there really is an effort to portray any parent who tries to recover a child as a wack-a-billy. I wonder how far off it is before they try to prosecute a parent for chelating?
Posted by: Nora B. | November 25, 2009 at 12:44 AM
Amen, Sister! I think another huge influence/cause of our research stagnation is the fact that we still have too many psychologists and psychiatrists on these boards. They are all competing for money to continue their non-biological research that they pass off as "scientific." Pretend science is all they know how to do and their livelihood depends on it. So they observe behavior (eye gazing, tv watching, whatever), apply a few statistics, and voila, we have some association information which really means nothing. Unfortunately society has somehow evolved to accept this type of information as relevant. Maybe demanding limitations on psychological/psychiatric research from here on out is a path to pursue...
Posted by: mlinn | November 25, 2009 at 12:21 AM
Sorry Ann D;
I did not get to say what I wanted to(because I am constantly been bothered) but
It this autism crisis is not going to hit the government!
That is right when all these kids hit the age, and try for the welfare system the government is going to make it just as painful as they did getting any justice from the vaccine compensation program.
The US government has people working for them that are not only smart, but have had time to get it all figured out and they have set the number of hoops we have to leap through, and just how high we have to jump too.
My mother was right! Don't ever expect anything from the government except taxes. It is all up to ourselves.
Posted by: Benedetta | November 24, 2009 at 08:57 PM
Ann D
We have spent the day with the clinical psychologist today. We mostly went there to try to get welfare, yeah, a government handout. They (government) was involved in the crime, but like most crimnals they don't want to pay for their crime!
So the psychologist says my son has Aspergers and we discussed what the problem was there. My son over estimates his ability in social situations He says my son thinks he is a "hotty" that he really thinks he does fine in social situations. That he really takes language literally.
My son also has Tourettes
My son also has a seizure disorder.
We looked at pictures of the brain and he explained that the area of the brain that was (genetically implied) is over reactive and has no off switches just on switches which probably lead to over stimulation and thus seizures.
He says Ben can work. Okay, great! He gave us a number to call to get occupational and speech help. Just spent his high school years running up to Richmond Ky 45 minutes away every week and now we get to run 1hour and 30 to more thearpy. No help in getting social security or SSI which is why we went to him.
He says Ben is smart and he is super good in spacial what every. Yeah, but he can't follow people's small talk, or true feelings.
So I am glad he is not going to be instutionalized. I know many of you are facing that and would do anything to be in my shoes and I should not complain. Still I would like a lot of help here and I just don't know if I should give up trying to get SSI or not.
Posted by: Benedetta | November 24, 2009 at 08:48 PM
"Wait till suddenly the kids who've been ignored for years descend on the welfare system. "
My State's not even allowing applications. There is a freeze on applying for help. Been that way for the past six months. And these are our little children, most likely those under 5. Ten years from now there will be an attempt at some sort of housing, more than likely an institution, you want help, you give up the child. Twenty years from now many of them will be living in the streets. Thirty years from now half of them will be dead. Forty years from now there will be a kind of leper colony overseas, outsourcing the services and support and keeping evidence of a corrupt government away from the eyes of the public, media will obey to the mandated blackout. Fifty years from now an underground movement will develop due to a book published exposing genocide committed by the US Government. Sixty years from now riots have turned into a Civil War that will escalate globally. Seventy years from now our names will be written in history books and a new era will begin. One hundred years from now my son will kiss his great-grand son and daughter goodnight and die peacefully in his sleep. He will be remembered with your sons and daughters for creating safe houses and an underground railroad nicknamed Sodor, sheltering doctors and parents who were wanted for Sedition and other crimes of resistance.
Nah, maybe we will all just die when the Great Cycle of the Mayan Long Count calendar ends on the winter solstice, December 21, 2012.
Posted by: bensmyson | November 24, 2009 at 08:35 PM
Katie,
This brings back memories of the doctor who told my husband and me that we were genetically incompatible and that was why our son had autism. Other than that, he had absolutely nothing to offer us.
As long as all the autism is "better diagnosing" and genetic in origin they can get away with their endless head-scratching over autism, the mystery.
Wait till suddenly the kids who've been ignored for years descend on the welfare system. I can't wait to see what imaginative explanations they come up with to downplay the disastrous impact hundreds of thousands of young adults with autism will have on the taxpayers of this country. Seriously, when that happens no one will be listening to the lies we all know by heart. Our only concern will be autism, the health care emergency.
Anne Dachel
Media
Posted by: Anne Dachel | November 24, 2009 at 06:35 PM
It's all about the money at NECC htbenz. That and the director's enormous ego. The children seem to be an afterthought.
Posted by: jen | November 24, 2009 at 05:54 PM
NECC has no shame, rather than address the issue of 1 in 91 diagnosed children in the USA, they opened their second school in Abu Dhabi...
http://www.necc.org/programs_services/abu-dhabi-school.asp
Posted by: htbenz | November 24, 2009 at 05:36 PM
Katie, you are an excellent writer. You raise fair and pertinent questions. Thank you.
Posted by: AnaB | November 24, 2009 at 03:15 PM
As the drug companies basically own the news media, (just watch the evening news) they will continue to get their message their way nearly all the time.
From Enron, to the banking system & Wall Street fraud, and soon "cap and trade" most of the politicians run with the corruption money most of the time. Soon that will be all that is left, ...if we are not there already.
Posted by: cmo | November 24, 2009 at 12:43 PM
March 2002: I enroll my son in a tantrum study at the University of Minnesota.
April 2002: A psychologist elsewhere gives my son an autism diagnosis.
April-November 2002: Despite enrollment in therapy, tantrums continue. Parent reads medical literature.
November 2002: Lab tests done by Pfeiffer Treatment Institute show my son has nutritional deficiencies.
December 2002: Within 2 weeks of receiving nutritional supplements, my son's tantrums diminish drastically.
Spring 2003: I write letters to U of M tantrum study director and my son's pediatricians sharing the positive medical results.
Spring 2003-present: No response from the "experts."
Posted by: nhokkanen | November 24, 2009 at 12:38 PM
I go to Children's Hospital for my daughter's endocrinologist appointments - she has type 1 diabetes. All I can say is that my ped endo goes NUTS on me when I refuse the flu shot for my daughter/family every year. One time I got brave and explained to her my reasons for refusing (mentioned my son's GI problems, vaxx's possible connection with autism, etc). She freaked on me! Started talking about all the 'experts' @ Children's who work with kids with autism and there is no connection with vaccinations. Blah, blah, blah. I just rolled my eyes and gave up on her. The crap runs deep there for whatever reason.
Also, want to note ... When I was going through some crazy GI stuff with my son (years ago when I had just started looking into possible connections with vaccinations)... I went to a very well known GI doctor - not associated with Children's Hospital - (I'd give his name but not sure I would want to out him... in case I read him wrong). I casually mentioned vaccinations as a possible problem for my son (again this was when I still thought the idea was somewhat implausible). He quietly and secretively (ie no record in file for this)... wrote a name down on a scrap of paper and told me if I thought that my kids had problems with vaccines and/or problems digesting casein/gluten that I should contact this person and make an appointment. I remember when I went home, I looked up the person's name and it was a holistic-type of doctor. I just remember thinking how odd it was that this well-known GI doctor from Mass General was referring me to a holistic doctor for information... Somewhat surreal. I didn't end up doing that because I started some diet intervention things with my son on my own, etc... I really believe that this doctor knew that I going down the right road with the vaccines/diet connection but was unable to say it out loud or to promote the idea. Sad really...
Posted by: Sue M. | November 24, 2009 at 12:28 PM
Thank you, Katie. CHB is a travesty and, as I replied to your earlier post on the subject, the reason my children have autism (flu shots given in infancy).
I have to pipe in about NECC as well.
From what I've seen over the past four years as a resident of Massachusetts with two effected children, NECC seems to be the enemy. It seems to be the kind of place where some families can feel they're having a benign, even helpful experience while horror is going on just down the hall. The use of drugs, restraint and food reinforcements known to be toxic to our kids is part of it, but it's also the fact that NECC emits a distinctly malevolent "political" and ideological influence on autism services in the state. Here's a sample of NECC's research newsletter entries: http://www.necc.org/research/newsletter.asp
Note the number of anti-biomed/vaccines-really-really-don't-cause-autism articles, and the one I particularly like for it's "sophisticated ironic play" on David Kirby's book, an entry entitled "Evidence of Harm"-- to describe the child who died from chelation. This is not the publication of an open minded, non-politicized organization that will ever change its mind or its tact on cause and treatment of autism. Stick a fork in NECC, they're cooked and the world would be better off without it.
We've had to fire more than one private ABA therapist because the anti-biomed brainwashing they received at NECC made them literally dangerous to our kids. In one situation, the BCBA deliberately wore clothes soaked in fabric softener to follow up her written protest against our request that therapists not wear strong perfume because of our kids' serious reactions to synthetics. One therapist received such a scary brow beating from the NECC-trained director of the service over our children's biomedical issues (the director was yelling that our kids "have no medical issues") that she had to quit and decided to return to school so she could get out of ABA altogether.
Though I've met parents who have their children at the school who opt out of drug treatment, NECC pushes and prescribes antipsychotics and other drugs routinely. And when the children don't improve from the Skittles reinforcements and Risperdal regimen, the center has referred the failures to the Judge Rotenberg "shock" Center (page 3 of JRC's own "executive summary" on some of NECC's referrals: http://www.judgerc.org/posonlyprograms.pdf ; then go to page 7 for details of NECC students being drugged and restrained up to 70 times per week ).
JRC is the repository for children so drug damaged that they'd die if they took another pill but who's behavior has become so problematic that no other institution will take them. I view places like NECC as a kind of "feeding tube" for places like JRC, both because NECC exerts its considerable influence in preventing further research on environmental cause and because of its practices. So much for NECC's "positives only" philosophy if they drug and restrain to this degree and if the end result is landing at JRC. Positives only is a mischaracterization.
NECC is funded in part by Dunkin' Donuts, so I seriously doubt they'll ever change their credo on GF/CF and biomed. I would run steer clear of anything that NECC was intrinsically involved in. I don't particularly care how "great" they are at providing ABA (and I question this because of little things like the fact the school would rely on antipsychotics and would *RESTRAIN A CHILD UP TO 70 TIMES A WEEK BEFORE IT WOULD EVER TRY GF/CF*-- sheesh)considering the other drawbacks in their philosopy and approach.
Posted by: Mass protest | November 24, 2009 at 12:25 PM
Thank you so putting up that site Kim!
I take back every nice thing I said about NECC- ever. How dare this man tell our families he knows the "research is done! The NEJM is begging people not to research vaccines anymore." What an idiot!
Outside of a handful of drug company sponsored studies and CDC garbage there has been no research regrading how our insanely aggressive combination vaccine infant and toddler schedule affected our children's nervous system.
What arrogance! What ignorance!
Posted by: Katie Wright | November 24, 2009 at 12:18 PM
What is even more sickening htbentz is when Autism Speaks alligns themselves with places like NECC and CHB they are pretty much giving the middle finger to all parents who thinks their children were vaccine injured. AS, NECC, CH, it's all just big business to them. Our kids mean very little. Just huge dollar signs.
Posted by: Sickening | November 24, 2009 at 12:10 PM
Matt is probably on the horn with the money changers at Autism Speaks making sure his coffers are still safe.
Posted by: Stagmom | November 24, 2009 at 12:00 PM
NECC's 2 cents following the Cedillo/Hazlehurst test cases...
http://www.necn.com/Boston/Health/2009/02/12/Court-finds-no-link-between/1234492858.html
They just suck, don't they?!
Posted by: htbenz | November 24, 2009 at 11:39 AM
Where is Matt today? I honestly would like to hear CHB response today. In our company we routinely apply for grants for research or projects. You can go the conservative route or doing truly meaningful and groundbreaking work. Few offices within our gov't reward groundbreaking/meaningful/game changing research. Even with all this 'green technology' money that is out there. So, yes, CHB could easily be fighting for the research money that is out there in a safe way - - but we need these big, powerful organizations to STAND UP and take a chance. We are not talking voo doo - this is evidence based treatment. At least attend a few conferences, read a few papers, open your mind. Stand up for our kids.
Posted by: Cathy R. | November 24, 2009 at 11:26 AM
Didn't Geraldine Dawson of AS do this research already, how much more do they need? I wrote Geraldine years ago, telling her she is only studying the effects of extreme mercury poisoning...hellloooo....
I am sick of this research analysis paralysis...I am sick of the non implicating studies...I am sick sick sick of it.
Now to the obvious...China just executed two who were involved in tainted milk scheme...good thing these people don't live there...or they would be in like fashion held accountable for their "disease" crimes...of SIDS, Autism, Brain Damage and Epilepsy...by vaccination.
Posted by: Kathy Blanco | November 24, 2009 at 10:44 AM
I'll bet the parents of this poor boy doesn't think NECC is such a wonderful place. Killed due ot a violent restraint. What if his behaviors were from gut pain or some underlying cause? Did anyone there care? Did any NECC doctor care? No. Just react to the behavior and death results. The restraints and abuse must stop and places MUST look at the underlying medical problems in autism.
Database
http://www.mentalhospitalabuse.org/web%20docs/Courant/death_data.htm
Data Key:
N/A -- Information not available
P -- Physical restraint hold | M -- Mechanical restraint | S -- Seclusion
H -- Hospital | R -- Residential facility
(list has been modified to reflect only children and young adults ages 6-19)
Name
Age
Sex
State
Date
Method
Institution
Type
Notes on death
Cause of death
Bogrett, Jeffrey
9
M
MA
12/1/95
M
New England Center for Autism
R
New Hampshire boy died in restraints at a Massachusetts group home.
Sudden death during restraint
Tue May 13, 10:05:00 AM EDT
For those of you with a child who has been abused or for those of you who know of abuse that has occurred, could you please see if your school's or institution's name has been added, and if not, could you email me [email protected] with that info? Your personal information will not be shared, just the name and location of the school or institution and the reason it was added, so as to protect privacy and/or from retaliation.
To see the full listing, please click the following link: http://tcfpbis.blogspot.com/2009/10/state-by-state-listing-of-locations_24.html
Posted by: Sickening | November 24, 2009 at 10:18 AM
Sorry Katie but it is much more sinister than that at NECC unfortunately. They make it a point to stress that anyone who believes vaccines have any connection to autism will NEVER attend their center, regularly turn away any reports and test results from DAN! doctors, will kick a child out if any biomed is implemented and many parents get outside services fearing the entire time if NECC finds out they will kick them out over this as well. NECC does not work as a Team but works as if they think they are God. NECC is a clone of big pharma. How much money can we make and how can we convince parents they are nuts in believing in biomed interventions. Many parents buy into this and thus the vicious cycle continues for their kids. Sad!
Posted by: An Insider | November 24, 2009 at 09:42 AM
"Let’s look at research CHB is currently conducting:
* Spatial Processing, why autistic kids like electronic media
* Face Processing
* Let’s Face It (more face gazing)
* 88 Middle Eastern Families and their genetic clues to autism
* Tuberous Sclerosis face processing vs regular autism and face processing
CHB has received millions from the NIH and AS to study these subjects."
Maybe I'm reading this wrong, but if this hospital is getting millions from NIH and Autism Speaks specifically to study these subjects (studying the exterior of children mostly), then the blame I agree is not specifically CHB's. It simply says a lot about the interests of those contributing the funds to Children's Hospital of Boston.
Posted by: Patrick | November 24, 2009 at 09:35 AM
Wow when I look at that list of research all I can think is that THEY KNOW.
Posted by: Maggie | November 24, 2009 at 09:32 AM
My experience w/CHB was short. My son's former pedi, upon diagnosis, ordered a BEAM study even though he had no outward signs of seizures. Because I knew there could still be electrical "activity" in the brain, I went ahead and made the appt. but I did have several ?'s (as any parent would) regarding the procedure, results & possible follow-up treatment. I was also perplexed that given the state of my son's health at that time - chronic diahrea, reflux, eczema, extreme hyperactivity, sleeplessness, etc. - that this was the only recommendation given by his pedi. After a few weeks of unanswered phone calls, a snooty receptionist and an arrogant physician's asst who eventually called me back and gave me generic robotic responses completely lacking in compassion about how they were going to strap my son to a board for 4 hrs, paste electrodes on his head, he would have to remain perfectly still & awake, and we would only receive a phone call back re. results if they found something that concerned them (translation: we're using your son as a guinea pig for our own data), we decided against the test and have used MGH, LADDERs, a different pediatrician and a reputable DAN doc up on the most current autism research to pursue evidence-based treatment for our son.
Posted by: Dana Read | November 24, 2009 at 09:31 AM
Katie
You are spot on regarding the shift that needs to occur regarding research expenditures. THANK YOU for continuously bringing the spotlight to the core.
I differ on one point (Dr. Herbert): many disease processes and individual's unique structures come together in various ways to result in "autism". Autism is a symptom. It can reflect an on-going disease process, one-time injury, metabolic (i.e. Rett's Sydrome folic acid treatments), mitochondrial, structural (like tuberous sclerosis), etc. plus environmental and genetic factors.
Posted by: science | November 24, 2009 at 09:17 AM
I have friends whose children attend NECC. By all accounts their therapists are well trained in ABA. I understand that NECC gives many successful lectures around the country regarding behavioral therapy and autism.
What I have also heard from parents is that NECC has been very slow to recognize that many behavioral problems ( such as pressing one's tummy on tables and chairs) have a physical cause. I would love to see NECC attend DAN! conferences, not as presenters but in order to listen to the clinicians who are often successful in treating the underlying medical conditions of self- injurious or non responding kids.
Posted by: Katie Wright | November 24, 2009 at 09:13 AM
From the comments posted, I suspect we can rule out Children's Hospital of Boston as a potential source of meaningful research into what "causes" a child to inexplicably "regress"..leading to an eventual diagnosis of autism.
Unfortunately, too many researchers avoid looking for the "cause" because the "cause" may prove too inconvenient for a powerfull public health bureaucracy that simply cannot allow their heavy reliance upon overly aggressive vaccine policies to be questioned.
Watching some of these formerly prestigious institutions avoid meaningful research reminds me of OJ's formerly prestigious Dream Team of lawyers..who successfully confused a jury of his peers, paving the way for OJ's eventual acquittal.
I think it safe to say that OJ was convicted in the much wider court of public opinion..and...one wonders if the Dream Team would do it all over again if given the chance to do so?
Posted by: Bob Moffitt | November 24, 2009 at 08:57 AM
"doctors must make an effort to educate themselves about the immediate and profound needs of our children and the need for more biomedical interventions"
And herein lies the problem .. an effort to educate needs to be the focus of our community! We all do it everyday on our own, AoA does it daily, and yes, we are educating one thought at a time, but we aren't reaching the deaf ears of the scientific community that heeds the call with the research money. How can we refocus our issues so that our kid's expensive test results proving what we are treating reach the proper hands as a wake up call?
Excellent follow up Katie!
Posted by: Tracy McDermott | November 24, 2009 at 08:44 AM
Having gone there myself with my own son I can say Right on Katie! I do not understand why these places can't spend time and money on important research that could help our kids now. Makes me wonder if it has anything to do with influences from big pharma.
Posted by: JR | November 24, 2009 at 08:34 AM
Also adding to htbenz's list of DAN! doctors in MA.:
Dr. Darren Lynch
395 Pleasant Street
Northhampton, MA. 01060
413-584-7787
He is a wonderful and knowledgable DAN! doctor.
Posted by: Jessica | November 24, 2009 at 08:29 AM
Katie - it sounds like Cyr's interpretation was ridiculous, but thanks for the clarification anyway.
You are a powerful voice for this community - thank you.
Posted by: Parent | November 24, 2009 at 08:05 AM
Below you can see exactly who Children's pairs themselves with, The New England Center For Children. The institution that requires parents to sign documents forbidding them from implementing ANY biomedical treaments or seeking the advice from any DAN! doctor or doctor who may seem to provide biomedical interventions. (they bash Dr. Buie there often I hear) Truly, truly disgusting. These places have no interest in the well being of the whole autistic child, but in the tuition they can make off of them by keeping them severe AND sick! CH Boston has been and always will be yet another place with little interest in getting to the real issues as to the cause of autism.
________________________________________
NECC is the recipient of two national awards, one from the U.S. Department of Education and the other from the Society for the Advancement of Behavior Analysis. In the last 15 years, 690 full-time employees of NECC have received master’s degrees in one of three on-site graduate programs. Approximately 500 of these now
work with students with autism in public schools across the United States and around the world. NECC faculty has made more than 692 conference presentations and has published 142 research articles in scientific journals. NECC maintains strategic partnerships with UMASS Medical Center, Northeastern University, Simmons College, Western New England College and Boston’s Children’s Hospital.
Posted by: Jessica | November 24, 2009 at 08:05 AM
DAN docs in the greater Boston area...
*** Massachusetts ***
Christine M. Keenan, R.N., M.S., C.N.S.
Christine M Keenan, RN, MS, Inc.
41 Church St.
Westfield, MA 01085
ph: 413-562-8200
fax: 413-562-5006
Carol Englender, M.D.
160 Speen Street, Ste. 203
Framingham, MA 01701
ph: 508-875-0875
fax: 508-875-0005
Paul J. Giordano, ND, DC, DACBN, CCN, CAP, LDN
Giordano Holistic Wellness Center
225 Broadway, Suite 209
Methuen, MA 01844
ph: 978-688-7100
Gail Szakacs, M.D.
21 Main St, Ste C
North Reading, MA 01864
ph: 203-834-2813
fax: 203-834-2831
Paul Giordano, ND, DC, DACBN, CCN, CAP, LDN
Giordano Holistic Wellness Center
40 Mechanic St., Ste. 204
Foxborough, MA 02035
ph: 508-543-3373
Paul Millard Hardy, M.D.
Hardy Healthcare Assoc.
62 Derby St.
Hingham, MA 02043
ph: 781-740-8300
fax: 781-740-8242
Jeanne Hubbuch, M.D.
288 Walnut Street, Ste. 420
Newton, MA 02460
ph: 617-965-7770
fax: 617-965-7378
Posted by: htbenz | November 24, 2009 at 07:25 AM
CHB and NECC both are MAJOR letdowns for our kids. Luckily though there are good DAN docs in the area and also Mass General Hospital LADDERS program which is head and shoulders above anything available at CHB:
http://www.ladders.org
Posted by: htbenz | November 24, 2009 at 07:22 AM
I wouldn't be so sure Children's wants to do "better than this" Katie. I brought my child to CH Boston 10 years ago. They handed me a totally useless report and gave me some canned answer of, "autism isn't treatable, go to NECC." It's like a conveyor belt runs through that place and the children are just products to be shipped in and shipped out. They were useless then and are useless now and guess what? They will be doing the same "safe, useless" research 10 years from now, I guarantee it. You will never see anyone from Children's attend a DAN! conference or ever look into autism as a whole body disorder. They are narrow minded and I am certain so attached to Big Pharma that they will never be convinced biomed does a thing for any autistic child. The ignorance in Boston is glaring!
Posted by: CH=nohelp | November 24, 2009 at 06:16 AM