PBS on Autism: Robert McNeil's Grandson's Severe GI Dysfunction
See full story and comment at PBS HERE.
Watch the full episode. See more PBS NewsHour.
There's much more at the PBS site. Here's an excerpt. Thank you to our good friends Alison and Dave for opening their hearts and their home for the world to see that autism, vaccine injury and the very GI disorder Dr. Andrew Wakefield studied are fully realized in countless kids, including their own son, Nick.
ROBERT MACNEIL: That worry sent Alison to a developmental pediatrician who confirmed their fears: Nick had autism.
ALISON MACNEIL: Nick was irritable, crying, inconsolable and now is not on track developmentally at all. He's gone backward. So we went from a 15-month appointment where this child was A-OK, supposedly, and given the MMR, the DTaP and the Hib vaccines. People say to me, Alison, it's a coincidence. Alison, how do you know this happened? Well, it's impossible for me to know. But what I will say is this: It was not a coincidence that my child was diagnosed with autism at the same time that his whole system shut down. Something happened to my child.
ROBERT MACNEIL: I understand Alison's suspicion, but public health authorities say there is no scientifically valid evidence that vaccines cause autism. And Alison found little support from the developmental pediatrician.
ALISON MACNEIL: When I said to her this child has not had a formed bowel movement since the 15-month shots, she said children with autism have diarrhea. When I said that he was crying inconsolably, she said this is part of autism. They can't regulate their emotions. So it was all lumped under, "yes, we always see that with autism. It's just autism."
ROBERT MACNEIL: Nick's complex problems demanded a broader view of autism. Some call it a new paradigm, or a systemic illness, or a whole-body experience. One of the leaders of that new thinking is Dr. Timothy Buie, a pediatric gastroenterologist at Massachusetts General Hospital.
DR. TIMOTHY BUIE, Massachusetts General Hospital: Six months ago, he was so lethargic and so out of it that he came into the office and literally laid on the chair for a 30- or 40-minute visit. He never moved. He wouldn't interact. He wouldn't give you any eye contact whatsoever. And at the end of the appointment, Mom picked him up and took him out and went home.
ROBERT MACNEIL: Dr. Buie found changes in the lower GI tract he called lymphoid-nodular hyperplasia -- inflammation and damage in his small intestine. How does that affect the life of a child like Nick? For instance, does it give him pain?.....
See full story and comment at PBS HERE.
Unfortunaltely until now I am able to get a hold of this site.
Anyway, I do not have any children with any of these problems,etc.
BUT what I would love to point out is this: Would there happen to be any chance that this horrific ASPARTME be any cause???
I am ADAMANTLY against this chemical that seems to be causing more problems than helping.
I hate aspartame with all of my might. I avoid it in in my house and any way I can, in every sense of the word, and I see pregnant women drinking and eating this junk like nobody's business!!! Could this be a cause? What is worse also is that I see it in children's meds, cough syrup and people giving there children SUGAR FREE (ASPARTAME LOADED) drinks, food etc.
I don't know, may be just 'food for thought', no pun intended, really. It's just that I hate aspartame with a passion and I truly wish that everybody would boycott this chemical.
Thank you for reading!
Posted by: Gabriela Peterson | January 10, 2012 at 08:53 AM
Beverly Arnold says:-
'Mr. MacNeil, something has blinded you to accurate reporting about the effect of vaccines on autistic children. The NYT 1 week later had an indepth article about Dr. Wakefield that exposed his theories as insufficiently researched with spurious methods of data collection. Everyone wants to cure this baffling disease. I am so disappointed in your reportorial skills.'
This comment is apparently directed at Mr Macneil, so perhaps this web site is the wrong site for it!!- unless, Ms Arnold, who states she is 'pleased' with her comment, was 'instructed' to put an adverse 'final' comment onto an older topic thread which was no longer attracting comments. This seems to be happening rather a lot on AoA.
I am not going to argue with Ms Arnold EXCEPT to point out something fundamental about REAL scientific investigations which should conform to the following order:-
1. Observations
2. Hypotheses
3. Devise experiments to investigate the hypotheses
4. Collate findings
5. Formulate conclusions
The Wakefield et al 1998 Lancet paper was NOT and NEVER PURPORTED TO BE a properly conducted scientific experimental exercise. It was an early clinical study based on observations and only involved 12 children. Dr Wakefield DID make some tentative hypotheses, based on his and the clinician's observations, along with the histopathology findings, but there were NO conclusions reached, just a plea for more 'in depth' research to take place. Dr Wakefield clearly stated that NO MMR/autism link had been proven.
So when Ms Arnold states the NYT:-'exposed his,(Dr Wakefield's), theories as insufficiently researched with spurious methods of data collection', then perhaps it is the NYT reporters who require 'educating'. Dr Wakefield's 'theories' were as a RESULT of his observations, not the other way round. I am not sure what Ms Arnold means by 'data', but I assume she is confusing this term, normally associated with statistical analysis, with the published details about the chidren's medical histories as compiled by Professor Walker-Smith at the Royal Free Hospital, NOT Dr Wakefield. (This is clearly stated on the Lancet paper. Dr Wakefield was employed as a RESEARCH SCIENTIST, NOT a clinician.)
Posted by: Jenny Allan | May 07, 2011 at 10:04 AM
Beverly Arnold;
PS
It is easy to stand behind your statement when you have written a judgemental, mean, hit-and-run statement while you remain faceless, address-less,not totally educating yourself on the subject, not communicating with parents that "know" the vaccine caused the problem, and asking why they think that, what was the circumstances.
If you did that, and if you have noting invested in the vaccine industry - you would have to come to the conclusion something is rotten in Denmark and it is the saftey of vaccines.
Posted by: Benedetta | May 07, 2011 at 09:18 AM
Beverly Arnold
Do you have a child with an immune disfunction, and regularly have bouts of stomach aches, headaches, fevers, earaches, sinus infections, constantly coming down with strep, pneumonia or a virus (that no other kids in the classroom had, and staying sick for longer than all the other kids in their class every would with the virus)?
Do you have a child that had a stroke shortly after an vaccine?
Did your children after their vaccines come down with Kawasakis - perhaps not immediately but over the course of six weeks?
Did your children have a stroke, a seizure, a catitonic episode six hours after a vaccine?
Did you children have a high fever 0ver 103 after a vaccine
Posted by: Benedetta | May 07, 2011 at 09:00 AM
I approve of my comment
Posted by: Beverly Arnold | May 07, 2011 at 01:56 AM
Mr. MacNeil, something has blinded you to accurate reporting about the effect of vaccines on autistic children. The NYT 1 week later had an indepth article about Dr. Wakefield that exposed his theories as insufficiently researched with spurious methods of data collection. Everyone wants to cure this baffling disease. I am so disappointed in your reportorial skills.
Posted by: Beverly Arnold | May 07, 2011 at 01:54 AM
Welcome to AofA, Sage. Plenty of company here. And you are exactly right. I speak to that in my presentations - how isolating it is to raise a child(ren) on the spectrum. Another "gift." Peace
Posted by: Stagmom | April 22, 2011 at 08:09 AM
I have three kids all of whom have disabilities. Two are autistic and one has learning
disabilities. Although autism strikes 1 in 110 children it is profound how isolated I become
as a parent. It meant a great deal to me to see this story, another family who shares much of
what my family goes through. Thank-You for sharing your lives.
Posted by: Sage Aram Nash | April 22, 2011 at 08:05 AM
Sometimes the sound bytes don't give the right impression, after reading the expanded transcript of the interview between Robert MacNeil and Dr. Herbert I felt quite assured that the vaccine issue is being pushed forward by the best of minds.http://www.pbs.org/newshour/bb/health/jan-june11/herbertext_04-20.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+pbs%2Fnewshour-headlines+(newshour-headlines)
Posted by: barbaraj | April 20, 2011 at 11:07 PM
****** For anyone interested ******
It appears that PBS is having a live chat in regards to autism.
http://www.pbs.org/newshour/rundown/2011/04/autism-now-join-a-live-chat-wednesday-at-1-pm-et.html
It is 1 pm ET today.
Posted by: A Friend | April 20, 2011 at 12:15 PM
I was left a bit disappointed by the PBS program. Perhaps I went in wanting truth exposed and then watched footwork fancier than DWTS, choreographed to avoid the "word". I asked my sister, she's a pretty regular Mom ,has a 21 yr old son with autism and three healthy children. what did you get from this? She said, "the mom thinks it was vaccine, Mr.MacNeil interviewed experts, experts say it's mostly genes, (could be hundreds of them) coupled with something in the environment" I said, what to you understand when someone says the environment? She said," oh, polution from the air and water and products you clean with, things along that line". My sister has witnessed regression, bowel disease, and personally blamed the mmr 18 1/2 yrs ago, she has gone through diagnosis of MR, PDD, Autism, IBD and now is sitting on his strange weight loss and a scan showing swollen lymph nodes in his lungs,fearful that the next scheduled appointment will present lymphoma. She is the average consumer of media information, and so far, after watching episode three, "that's what she got!!" I on the other hand, hung on to the word "vaccine" as though it was flashing red each time mentioned, but that's what I wanted, she went in with no expectations. Mr. MacNeil did a wonderful job, put in great effort, his family presented their truth, however I continued to feel the avoidance by experts of the word "vaccine". I am looking forward to 4/5/6 hoping for more.
Posted by: barbaraj | April 20, 2011 at 11:26 AM
Oops, I should have written "flak" rather than "flack" in my previous post. I guess I was thinking about Rudy's role at about.com.
I do think the pr flacks are putting their big toe in here. They have to proceed cautiously because Robert MacNeil is well-respected. Perhaps he will be discovered to be suffering from Alzheimer's or perhaps he will merely have been duped by his crazy, greedy daughter. My God, even the 10-year-old granddaughter lusts after the perks the family is getting!
We've seen the world's most eminent pediatric gastroenterologist, Dr. John Walker-Smith, made to seem like a medical madman for doing the same things Dr. Buie did to help Nick.
What a world.
Posted by: Carol | April 19, 2011 at 03:27 PM
Lisa Jo Rudy has commented about the show at about.com. She's taking flack for this paragraph seems to have little purpose except to cast aspersions on the MacNeil family:
"Of course, the MacNeil family has access to services and people not available to most folks in the United States. They also seem to have centered their lives around Nick, to the point where Dad, after every long day's work, feels an obligation to take Nick on a multi-hour bus ride around town - because that's what Nick wants. A short segment with Nick's 10-year-old sister reveals that the little girl is quite unhappy about the attention her brother receives - and already anxious about 'services provided' that might be withdrawn when her brother ages out of the system!"
http://autism.about.com/b/2011/04/16/pbs-news-hour-examines-autism-with-surprising-results.htm
Posted by: Carol | April 19, 2011 at 02:44 PM
This is a wonderful portrait of a family with an autistic child. It mirrors in almost all respects our own experience as grandparents of an autistic child, a granddaughter who is now 12.
It is a life changing experience, especially for the parents, in this case our daughter, a single mother due to the stress on the marriage, and the siblings, a younger sister.
What is equally frustrating is the fact the it is virtually impossible to get health insurance for an autistic child, which often forces the parents into "poverty" in order to qualify for Medicaid.
Another frustrating issue is that schools are ill prepared to deal with special needs children, especially when they do not fit neatly into one category - our granddaughter was born profoundly deaf and developed autism later, coincidentally at the same time as a round of vaccinations.
Posted by: Claus & Cher Gehner | April 19, 2011 at 02:43 PM
Have any of you heard of the "Gut and Psychology Syndrom" by Natasha Campbell-Mcbride, MD? You can read her article at the Weston Price Foundation website. It might help some of you. She advocates a specific diet called the GAPS diet which is supposed to heal the gut. It is very interesting and compelling. A lot of people have had success with it. Good Luck.
Posted by: Tami Berman | April 19, 2011 at 11:54 AM
Just catching up on my AoA due to craziness in my life. I just so happened to have been reading about this and watching the PBS video this morning when I overheard on my tv that the Today Show was starting an interview with Mr. MacNeil.
I hustled over to grab a seat to watch when suddenly just as Mr. MacNeil was about to speak... they interrupt programming to go to some breaking news about some jack*ss with a gun in a mall. Now, if I was a conspiracy nut..... ;)
Posted by: A Friend | April 19, 2011 at 11:00 AM
CNN interview of Robert MacNeil regarding this series here:
http://www.cnn.com/video/#/video/bestoftv/2011/04/18/exp.am.intv.autismnow.cnn?iref=allsearch
Posted by: JenB | April 18, 2011 at 11:23 AM
I was astonished to see this on PBS . . . what an amazing surprise. Perhaps now people will listen.
Thank you to the MacNeil family - all of you. God bless you.
Posted by: Parent | April 18, 2011 at 09:23 AM
Heartbreaking and hopeful. The story of Nick is very similar to my son's story. I have so many videos of my smiling healthy baby. It's heartbreaking what has been stolen from these children. Nick seems to have more language than my son and also more GI problems than my son. And we don't ride buses, but we do ride elevators. What is hopeful is that there are doctors like Dr. Buie who are curious and willing to look at "autism" as a whole body illness and in that process are making our children more well. What also is hopeful is that this story is being aired and that Alison so graciously and eloquently tells the story for the world to know all-of-our-stories.
Posted by: Kristine | April 18, 2011 at 02:08 AM
Nick’s story is very moving, very much like the stories of our children. Thanks Robert McNeil, Allison, David, Nick and his big sister for making it so realistic and compelling. I do have a gut feeling, that perhaps something is beginning to change in the US regarding autism. First, the NIH had a public conference on autism, where parents of vaccine injured autistic children were given a voice. Then – the indictment and extradition order on dr. Thorsen. Now – this autism story on PBS. At the time of great federal and state budgetary deficits and funding cuts, perhaps somebody in the govt. did the simple calculation, that the societal costs of caring for millions vaccine-injured autistic children and adults (which count in hundreds billions per year) are too much. May be they calculated, that these costs are much more than the govt. officials and members of Congress take in bribes from vaccine cartels to push their vaccination agenda. Perhaps it is all about money, as always is. Also may be finally somebody in the govt. came to realization, that the US future is doomed with nearly whole generation of children injured by vaccines one way or another.
Posted by: veritas | April 17, 2011 at 10:38 PM
Has anyone done a study on what percentage of kids with autism have had the MMR and how many have not been vaccinated at all?
Posted by: Pat Farrell | April 17, 2011 at 10:05 PM
Thank you Alsion and thank you to your wonderful father for helping us get the word out more and more. The piece was so well done and your family is just amazing.
I am so damn sick of people like Vinnie Strully from NECC (who rejects any kid on diets, doing biomed, seeing DAN doctors, etc.)to the completely clueless doctors like Dr. Proffit telling us our kids' physical problems are either imagined or we should just accept them. I truly wish aholes like this could walk in our shoes for just one day. I am also so thankful for doctors like Dr. Buie who continue to help so many. Doctors like this are the true heros, not the scumbags like Profitt.
Posted by: LM | April 17, 2011 at 09:51 PM
Alison, Dave, Neely and Nick,
(Scripting the GPS)
I do hope you can feel all the gratitude that we all are sending to each of you, whether we can think of, or even say, the right words to convey the half of it.
Sometimes, as you know, things can look pretty bleak, and bleak indeed been the last few weeks for me and others.
But! Suddenly, there you all were, telling your story - our story - on the big stage, and we got a little peek at the sun, making everything feel possible again. Just in time. :-)
I always admired your father's work and was sorry to see him leave News Hour. What I'd say to him now, however, if I could is that "Autism Now" is likely going to be his best and most important work ever. From my heart, I thank him for his courage and his dedication to Nick and you - and this story.
Posted by: Mary Hirzel | April 17, 2011 at 09:12 PM
anyone get the feeling that this PBS series just might be different this time? I am encouraged by the first segment. Jim L being a journalist, I would guess that Offit will avoid being interviewed. The one question I would like to see asked and answered by any AAP mouth piece is," What is the incidence of brain damage due to vaccination?" with the follow up question, "What is the first line of the Hippocratic oath, and how do you square that sentiment with a medical intervention that will "unavoidably" brain damage some percent of the patients?"
Posted by: Ottschnaut | April 17, 2011 at 08:47 PM
Alison and Dave, my heart felt thank you goes out to you. My awe and admiration go out to Nick. You've told OUR story along with yours.
Posted by: rileysmom | April 17, 2011 at 08:00 PM
WOW Alison and Dave, Nick and sweet sister....Our family THANKS YOU ALL from the BOTTOM OF OUR HEARTS! Here's to more healing for Nick ASAP! Love, The Spencers
Posted by: kim spencer | April 17, 2011 at 07:51 PM
Thanks to you, Alison, your father and your whole family for
taking part in what I consider-the best tv piece on autism ever. When people say if you have one child with autism-you have one child with autism. But I disagree often with that statement-when I saw Nick, I saw Joshua. Truly, they share more similarities than not-even though there is a big age difference.
Love and best to you and your family, Maurine
Posted by: Maurine Meleck | April 17, 2011 at 07:38 PM
That was extremely well made....thanks for sharing your lives with us. In the media, we are always portrayed as parents at our wits end trying to find answers and blaming vaccines because we can't face the fact that it was just fate, bad luck, genetics, pollution, etc....chemicals are bad....unless they are injected directly into a baby via vaccines...and then...poof! they are magically safe and effective. I hope you catch my sarcasm. Point is that this should be shown to parents waiting for their "well baby visit" and then they can decide how many vaccines they want to inject into their babies.
Posted by: luckymom2D | April 17, 2011 at 05:33 PM
My great thanks to Alison and her family for putting their story in the public eye worldwide. Much good will come of this.
Watching Nick like going back in a time machine, remembering the chronic diarrhea and tantrums and obsessions. I owe my son's current successes in part to the pioneering activism of a mom whose son accidentally received two MMR shots in quick succession.
Nick has come so very far. With such a supportive family, the sky's the limit developmentally.
Posted by: nhokkanen | April 17, 2011 at 04:18 PM
Alison and Family,
This segment was so incredibly well done. Thank you so much for allowing your personal lives to be disrupted - it had to have been very stressful for all of you during filming - in order to show the world exactly how autism takes its toll not only on the children and their parents, but on siblings and grandparents as well. Your story and your courage have undoubtedly moved thousands more viewers toward questioning vaccine policy and putting an end to this madness. Thank you.
Posted by: Donna Laken | April 17, 2011 at 03:31 PM
Every bit of wisdom, courage and stamina I have been given in the process of trying to heal Nick has come from activist autism parents like all of you. I am so grateful for the warmth and support people have expressed for this segment. In many regards Nick's progress which can be measured in smidges moving in the right direction that over time add up to significant improvement, parallels the work we are all doing to promote vaccine safety.
Thank you to the editors of Age of Autism for providing us with a community and for their courage, generosity, and endless grace of heart.
Posted by: Alison MacNeil | April 17, 2011 at 01:54 PM
Notice the lined up toy cars on the coffee table. Oh if only they would be so neat and orderly in keeping their rooms clean when they reach 25.
And he acts just like my little son when he was that age,
"Home!"
Yes, even with his beloved grandparents he wanted Mom and Home. No matter how good of time or how kindly he was being treated he wanted home.
Fine when they are small, but at 25 "Home" My son has a mild form like Mc Neil's son, but I raised my kids with an expectation that they would some day have jobs, family and a life outside of his mother.
He and I both find the jokes on TV about 40 year old virgins extremely uncompfortable.
Posted by: Benedetta | April 17, 2011 at 11:41 AM
Thank you to the MacNeil family for your personal and much needed public announcement that your beautiful son/grandchild became sick after given vaccines and then started developing signs of autism. Like so many of our children, the word, "autism" does little to explain how ill and affected they are by pain, both medically and behaviorally.
The fact that Nick also has been diagnosed with "lymphoid-nodular hyperplasia -- inflammation and damage in his small intestine" as his grandfather, Robert NacNeil reports ,is horrific and is directly correlated to what thousands of other families report and what Dr. Buie was saying about thow this condition affects Nick so drastically.
This is the same GI condition that Dr. Wakefield has been crucified for discussing as it has been the MMR vaccine that parents kept reporting was the antecedent to the autism diagnosis for many. The medical, physical, behavioral and emotional pain -- autism -- that these children live with daily, and that the families must witness, is a travesty.
Posted by: Teresa Conrick | April 17, 2011 at 11:24 AM
Alison,
Thank you for speaking out and sharing your beautiful family with us!
Posted by: Sylvia | April 17, 2011 at 10:14 AM
Another child on the millions list hammered by vaccines.When is it going to end?
Angus Files
Posted by: Angus Files | April 17, 2011 at 09:56 AM
Alison & Dave - You are beyond brave. Thank you.
Posted by: Fabulous | April 17, 2011 at 09:33 AM