One of the big problems with the media has been their willingness to give the vaccine-induced-autism-epidemic idea far more wight than it deserved. While the science has been very one sided against the theories presented, the media usually puts out “he said/she said” type stories. You know the type. A new study will come out. A news story will be produced. They will open with people talking about the increasing numbers of people diagnosed with autism and the belief in the vaccine link in some groups. The scientists for the new study will be interviewed. And then the story will end with parents saying, “but I know the link is real”. It was a world of false balance.
That world has changed, at least for now. Sure not everywhere, but the media and the public’s perception of vaccines and autism has changed.
Case in point: the comic strip “Doonesbury”. For about 40 years Gary Trudeau has had his finger on the pulse of American society. He has been a harsh critic of political figures and popular culture figures (many papers have placed his comic on the opinion or editorial pages).
Here are a couple of panels from today’s strip (click to enlarge). Boopsie, former cheerleader and Playboy playmate, is discussing Jenny McCarthy:
The full strip can be found at Doonesbury.com.
The vaccine-causation idea has only survived through the media and public relations. The science never really supported the hypotheses. Jenny McCarthy rode the vaccine story back into the public’s eye, and appears to be trying to jump ship before it drags her back down. If today’s Doonesbury is any indication, she may have waited too long. She could do a lot of good by making a public statement distancing herself from the junk science and PR campaigns that created the image of a vaccine-induced-epidemic. It wouldn’t make up for all the damage she caused, but it would be better than having her publicity people beg the Colbert show to not be harsh on her, while she was at the same time writing pieces supporting the junk scientists for the Huffington Post.
When Doonesbury is calling you out for promoting a “bogus vaccine-autism link” and for causing real harm to preventive health care, you’ve lost public support. You can either try to stay low and ride it out, or do the right thing and repair some of the damage you’ve caused. The choice is yours, Ms. McCarthy.
Left Brain Right Brain 
Chris you really don’t know anything about autism and you really should educate yourself before commenting on the subject
70% of children with autism suffer with bowel diease and are in constant pain daily .
Autism Mom and Carl Bainbridge come her to “educate” people with autism and their parents about the condition? Save your breath.
“Chris you really don’t know anything about autism and you really should educate yourself before commenting on the subject
70% of children with autism suffer with bowel disease and are in constant pain daily .”
What does any of this have to do with the thread topic?
Put some effort in.
“AUTISM IS A SERIOUS FUCKING DISABILITY WITH LIFE CHANGING AND LIFE LONG REPRECUSSIONS”
No one here has denied this, and it is dishonest to imply that anyone has.
Provide a direct quote or retract your offensive, dismissive and derogatory accusations.
Also, learn how to behave. There are people here who have to deal with one or more ill or chronically disabled people in thier direct families (ironically including the people you lambast). It is absolutely selfish of you to expect them to put up with all that and such rudeness and behaviour in thier spare time just because you hold aggressive opinions.
actually tom my comment was aimed at chris who basically said autism is not a real disability
obviously if he feels this way he has no understanding of autism whatsoever
Awww, it looks like I hit a nerve. Again, Mr. Bainbridge and “Autism Mom”, you are posting unsupported opinions with any evidence. And like Dedj say, it really has nothing to do with Jenny McCarthy’s unsupported opinions on vaccines and autism.
Plus, you both insulted many of the LBRB regulars who are autistic adults.
Chris i could always send you some evidence lol
actually chris you did not hit a nerve you pissed me off
there is a real difference.
i do know that there are many bigots out there who want all autistics to be closeted up and jailed.
however the truth is that while i do disagree in general with lbrb what i had to say is also the complete truth
if you dont believe me come meet my son, i have a few other children around here i could introduce you to as well who fall into the same category that i just described.
i dont doubt that there are some autistics that can lead a fully functional(or close to it) life however they are the minority and in the process, because they are so close to NT there tends to be an attempt to ignore that there are a large number who will never leave their parents home.
one adult i met probably in his 40’s still lived at home and did nothing but sit in captain’s chair removed from his parents van and rocked all day long.
and ignoring that these people exist does not help anyone because when we as parent’s die these children will be left to fend for themselves, usually ending up on the streets or in jail’s (or in those places where mental institutions exist be placed there) these are not appropriate places for them but because they as a group get ignored there is no research or effort put into creating places for this group.
but as far as evidence goes i welcome you to come and visit our family because i can guarantee you 70% of autistic children do actually have bowel issues and suffer regularily. come visit i can even let you change a diaper just to get the point.
OK peeps, it might be time for a deep breath and a tad of compassion for each other? We are all walking an unchosen path as parents and individuals who have more challenges than most. Getting into a competition about who has it the toughest is not useful.
Carl and Autism Mom, just because some of us choose a different narrative when we consider ASD does not mean we don’t understand the hardhsips. Also I have to admit to being a tad dubious about the 70% stat you quote Autism Mom. Got a citation for that?
my issue sharon is that by not focusing on research to find the true causes (my actual belief is genetic/environmental combination with environmental likely being vaccine related) and treatments/cures as well as focusing on long term care for those who are not fortunate enough to be able to function relatively close to NT that we are leading to issues like that seen here
http://news.yahoo.com/s/yblog_thelookout/20110225/us_yblog_thelookout/eight-year-old-arrested-in-school-for-fifth-time
http://www.azcentral.com/news/azliving/articles/2011/02/14/20110214phoenix-family-makes-painful-choice-due-sons-autism.html
http://www.thestar.com/news/canada/article/928276–family-gets-apology-after-autistic-man-confined-in-room-for-weeks
http://canadiancrc.com/Newspaper_Articles/Tor_Star_Autistic_boy_kept_NB_jail_19OCT05.aspx
while it is good to focus on the accomplishments of those who can achieve close to NT status or even better those who can achieve the status of “savant” http://www.aparentsperspective.com/2011/02/boy-with-incredible-brain.html
it is also imperative to spend a serious portion of effort looking at how to avoid long term care issues as well as public endangerment issues that come from those who are severly affected by autism and are not likely to ever be able to truely function seperately from a full time care situation.
when we focus solely on the achievements of those who are achieving NT-like success, and the media is showing articles like those i showed above it means that those who are close to NT but still known to be autistic will never be completely trusted because no one will ever be sure how far they might be away from a situation that might put them in that type of situation.
we get to far away from research when we attempt to stifle any attempt to look into any possible avenue of research
it does not matter what the actual cause is that cause needs to be identified and that can only be done through true comprehensive research. That research cannot happen when the community in and of itself supports anyone who is belittling any opinion in to possible causes no matter what it is.
The autistic community as a whole needs to stand up with a united voice and say ” we need to identify the true cause(s) of autism regardless what it is and regardless who we upset in the process”
Carl Bainbridge,
I would urge you to read this blog for content, and put aside the images that many have tried to create about it. There are a lot of strawman arguments out there, and you are repeating a lot of them.
Are you aware that the majority of causation research funding is focused on environmental causation and gene-environment? You can find that out if you read this blog. You won’t if you read the blogs that promote vaccine-causation. Tell me, who is scared of the true answer?
The fact is that thimerosal “epidemic” didn’t happen. Time and again studies have shown this. And yet there is massive denial of the multiple studies that show this. Who is upset in the process?
MMR doesn’t cause autism. Even Rick Rollens, once one of the great proponents of the theory, admitted it when the Hornig study was published. Epidemiological studies have shown again and again that there is no increased risk of autism from MMR. Who is upset in the process?
In both case, the groups upset in the process are those who deny the science. Those who promote vaccine-causation.
People like Jenny McCarthy. That’s what this post was about. Jenny McCarthy, whose kid regressed something like 18 months after his MMR. A little factoid she doesn’t make very clear in her promotion of fear. Jenny McCarthy, whose promotes a vaccine schedule that in the end has only one vaccine-polio. Jenny McCarthy, who supports Andrew Wakefield, a man found guilty of multiple counts of unethical behavior.
If you bothered to actually read this blog, you would see clearly that we don’t need to be lectured about the needs of those with the greatest challenges. You wouldn’t feel the need to lecture about the fact that autism is a disability. “when we focus solely on the achievements of those who are achieving NT-like success” Who is we? Certainly not me. Tomorrow’s blog post is about pain management in nonverbal patients with ID. Written Friday, by the way, in case you think I may have written it in response to this.
“and ignoring that these people exist does not help anyone because when we as parent’s die these children will be left to fend for themselves”
75% of my kid’s life will be spent as an adult. 50% without me for support. You don’t think that thought doesn’t cross my mind every hour? Stop believing what you read on other blogs. This (vaccine causation) isn’t a discussion between parents of challenged kids and parents of “NT-like” kids. Take a look at recent posts. You will find more action alters from “The Arc” than from “ASAN”.
So, I would ask you, put the strawmen aside. Stop this “savant” and “NT-like” train of thought. It doesn’t belong here. I can point you to blogs that keep that strawman alive, in spite of all the evidence that keeps getting put in front of them. They’d love to have you join them wasting time fighting a battle that doesn’t exist.
Mr. Bainbridge:
I am not ignoring those people, but I do realize they are a small percentage of the total, and I doubt your son will end up that way. Autism is not developmental stasis, it is more of a developmental delay. And the scientific consensus from several large epidemiological studies covering hundreds of thousands of children in several countries on three continents is that autism is not casually associated with vaccines.
Here are some books written by parents of autistic children to give you some perspective, the last one is fiction:
Unstrange Minds by R.R. Grinker
Not Even Wrong by Paul Collins
Speed of Dark by Elizabeth Moon
Autism Mom, next time you make an assertion provide the evidence. Do not offer to send it individually. Make it part of the whole group conversation. Like this:
Pediatrics. 2009 Aug;124(2):680-6. Epub 2009 Jul 27.
Incidence of gastrointestinal symptoms in children with autism: a population-based study.
Ibrahim SH, Voigt RG, Katusic SK, Weaver AL, Barbaresi WJ.
and
BMJ. 2002 Aug 24;325(7361):419-21.
Relation of childhood gastrointestinal disorders to autism: nested case-control study using data from the UK General Practice Research Database.
Black C, Kaye JA, Jick H.
@Autism Mom. This morning I have spoken with 6 mothers and an aunt of children with ASD. Counting my own children, that makes nine autistic children (and one AS Adult). Not one has bowel disease or is in constant pain daily. If your 70% figure were correct, these nine happy healthy kids would be a serious statistical anomaly. Please provide a reference for your 70% bowel disease figure.
@ Carl, I can appreciate your frustration. I wonder how you feel about those who claim to have ‘cured’ their children, thereby offering fals hope to others? I too think genetic/environmental combo, but not vaccine related. My son was born ASD, so no post birth environmental factor is at play with him (incidentally he is fully vaccinated and has no gut issues).
I would ask you for a moment to consider some of the generalisations you seem to make about those at the ‘high functioning’ end of the spectrum. I assume you are not suggesting that their path is an easy one. Having a profound awareness of your difference can be difficult. Wanting to make connections with others, but being unable to either make or sustain them is painful. There are other specific challenges for people who by comparison to your son may seem ‘fortunate’. I in no way want to minimise how tough things are for you. But please appreciate that even those of us with children who can functional reasonably well still have the same worries about how our children will live happy, fulfilling and safe lives. Particularly after we have gone.
Incidentally those who achieve savant status tend to have serious deficits in others areas of functioning. The brain can only do so much, and it is my understanding that when it is focussed on performing such specialised feats it tends to compromise other functions. I will try to recall the article where I read about this recently if you are interested.
McD:
That sounds familiar. I remember when my son was in preschool and elementary school having those kinds of conversations. Often during birthday parties. Those are the ones where the more than one child with echolia was was walking through the house reciting the lines of an entire movie (well, at least we did not find him in a tree, he was a compulsive tree climber), and there were a couple stimming, plus the young lady who went through the house moving things about. Months later I was still finding bits of ribbon in all parts of the house. Good times.
This was before 1994, so none of them were diagnosed with autism. That happened later with the revised DSM.
I occasionally run into either the child or the mother. One child who was not potty trained until fourth grade was doing quite well in a computer repair technical school, and one other child who had private speech therapy at the same time as my son is still quite disabled (but he is a sweet at twenty-two as he was when he was eight years old). It goes through the entire spectrum, and my son is somewhere in between those young men.
Also, I should let you know that I really feel for Ms. McCarthy and her son’s seizures. They are just freaking scary! I know, since I have had to deal with my son’s seizures. They are quite frequent with my son’s classmates. One of them would stop breathing when he had a seizure. This is not a minor issues. But it is also something that has happened to kids long before there were vaccines. My son’s first seizure started when he was two days old, before he had any vaccine (this was before the HepB vaccine).
I really really hope that Ms. McCarthy has a good pediatric neurologist for her son. It saddened me when I heard he had another seizure recently.
Hmmmm… I see what Sullivan quoted. Perhaps I should change that to:
How does that sound? Or is it not as important?
(Personally I am amused by those who try to educate me on issues on disability, which I have dealt with for at least two decades. Especially when I discover their kid is less than one quarter the age of my son. Wow. Got cojones? O es su un idiota? Me gusto mucho http://blog.epiren.com/ … lee eso! Ahora!)
McD
I did say children and not adults and most children with autism i know have bowel diease
so your statement proves nothing
I did have the link for the study at one time but my motherboard fried last year so i lost everything
When i find it i will post it
Dedj
Chris said I have a disabled adult son (from an actual disease! Go figure!) and I know all too well the lack of services.
So he was saying that Autism is not a diease?
I have a relative that works for a company that is linked to a pharmaceutical company that states
“What goes in come out”
Why do most employees of pharmaceutical companies never get vaccinated?
“Why do most employees of pharmaceutical companies never get vaccinated?”
Interesting, but is there evidence for this?
50%
American Academy of Pediatrics (2010, May 3). Gastrointestinal problems common in children with autism. ScienceDaily. Retrieved February
From the concensus report in Pediatrics:
Statement 3
The prevalence of gastrointestinal abnormalities in individuals with ASDs is incompletely understood.
The reported prevalence of gastrointestinal symptoms in children with ASDs has ranged from 9% to 70% or higher (Table 4). 13,16–25 Prospective descriptive reports from autism clinics have described significant gastrointestinal symptoms in at least 70% of patients,22 data that might reflect a referral bias. In contrast, secondary analysis of a UK database indicated that the prevalence of gastrointestinal symptoms was no different in children with ASDs compared with children without ASDs (9%) at the time of their initial ASD diagnosis.16
“
Autism Mom:
Who? What? Could you be more clear on what you are quoting, and trying to say, please?
Autism Mom,
Chris is female.
In addition, McD’s statement may prove nothing, but yours also proves nothing. The plural of anecdote isn’t data.
@chris YOU
i am going to answer the various commenters seperately to avoid confusion.
@sharon starting with the savant issue
realistically there is only one savant i am aware of that does not appear to have otherwise serious issues and that is the one i posted the link to. most others to the best of my knowledge do appear to have specific serious issues.
as far as the cure issue goes i stand middle of the road.
I do tend believe that the vast majority of those “cures” are individual specific at best and coincidental at worst. tho i do believe a cure may be possible it is unlikely we will approach that knowledge until we identify the various factors or combination of factors that lead to autism.
i am curious on the gut issue position i myself know several with the gut issues (far more then do not have them)
i guess perhaps the question is are we all talking the same thing. in our case we are talking a child who since before he was 2 has not had a single solid bowel movement with the various movements varying between soft, sticky, diarhea, and coloured water consistencies but nothing that could be considered even close to solid.
@Sullivan i have always fairly solidly maintained that i did not believe in a solely vaccine causation however i also am not convinced that the studies presently done have in any way eliminated the possibility either.
from what i have managed to find (without access to a paid subscription to medical journals as that is way beyond my means) is that the majority of studies aimed at debunking the vaccine belief have focused on specific chemicals (like thimersol) alone without including that those chemicals are interacting with other chemicals as well as the live or dead virus that is used in the vaccine. those reactions alone could be sufficient to potentially alter the results of any given study.
as for the MMR vaccine i think that to much effort has been spent on this vaccine specifically without looking at other vaccines as well (both given in combination as occurs in various areas and given seperately across time and the cumulative effects of that accumulation. Could it be that in various individuals a specific vaccine may be just one to many)
another issue in my mind with MMR is that i would like to see an in depth study comparing autism rates with the combined MMR versus seperate measles mumbs and rubella vaccines.
i do think people’s reactions to Jenny McCarthy are completely wrong tho. Not because she is right or wrong but because she is one of the only public figures who is promoting autism regardless of the angle she is promoting. Any promotion by public figures needs to be embraced while still maintaining you as a group or an individual may hold a vastly different view point
as far as the Dr Wakefield position there is still vastly differing views on his guilt. Myself i accept that there were regulatory issues that were definitely involved in his study i find the attacks he took for the MMR link were largely unwarranted. in his study he said he found traces of it in the gut of children and all of these children did have gut issues. To my knowledge it was never covered up that all these children were brought to him saying “look all these children have autism and all of them have gut issues. can you tell us why” he was approached from the original information i read long before this study became a beating post.
now do i agree some of his techniques were questionable but i do realistically believe that he was struck off solely because he was seen as the originator of the autism/vaccine link not because his study was flawed. (personal opinion) as a further aside his results have been replicated and i hope to find that study to bring the link here however that study was not well covered (and if my memory serves me correctly the author of that study was quietly struck off as well)
as far as the lecture on severe vs NT like i do feel it was warranted not necessarily based on the site but based on the comments i had read on this link alone.
“as far as the lecture on severe vs NT like i do feel it was warranted not necessarily based on the site but based on the comments i had read on this link alone.”
Would you be so good as to provide quotes to the comments you have read that led you to make your comments?
“as far as the Dr Wakefield position there is still vastly differing views on his guilt.”
There is a small group of supporters, true. But he presented his case in a hearing and was found guilty. Much of his defense, in hearing and since, is rubbish, to put it nicely.
As an example of the talking points that he produced and are incorrect–He was not merely approached by parents. He took an active role in recruiting children for the study.
“in his study he said he found traces of it in the gut of children and all of these children did have gut issues.”
By “it” I suppose you mean measles virus? I expect that paper to be retracted this year. That is a later study, by Uhlmann et al.. The methods used were incredibly poor, and it is clear that he was reporting false positives. He also ignored the clear negative results–from his own group at the Royal Free.
The vaccine-causation groups would do well to cut ties with Andrew Wakefield. He’s so clearly a fraud as to make supporting him a liability.
At this point we diverge. Here is a quote from the forward to Jenny McCarthy’s first autism related book:
“Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one. It relegates every other “normal” thing to utter insignificance.”
This is not a message I will embrace. This is not a public stance that should be made about humans. This is damaging. This is a position I will push back against, whether the person is a celebrity or not, whether the person claims to be “promoting autism” or not.
@chris i am going to comment on a couple of things you said (tho not necessarily to me)
one is the DSM i do not find that the enlargement of the DSM is actually that helpful to autistics as a whole. (it actually damages research and beliefs of the entire spectrum)
yes it is true that the general concepts of stimming/social difficulties etc are similar however the overall appearances are different and trying to find a single cause to cover all the spectrum may be misplaced.
for example take asperger’s, autism and PDD-NOS. All of these are now considered part of the spectrum however all of them are quite different. In our case our son is more along the lines of core autism however i also know those from the asperger’s and PDD-NOS groups (the PDD-NOS was not even identified as having difficulties till grade 4 while most autism is diagnosed by age 3) but the general fact is that all of them have individual specific differences that makes a common trigger unlikely.
a similar example that needs to be looked at perhaps is cancer. today research in cancer looks separately at breast,pancreatic,testicular cancers as well as leukemia as all are understood to be different even tho all are termed as cancers. It is highly likely that to have any true understanding of the various groups of autism that they will each have to be studied separately as well.
@Sullivan on your post regarding the gut issues i see what is written however and i have a big however. if we were in the UK and considered part of that study we would be classed outside the 9% with gut issues. Not because they dont exist but because we have never made an issue of bringing it to the doctor’s attention. I believe this is likely part of the issue behind the difference in numbers. another issue is at what point do they consider it a gut issue. point being when our son was diagnosed his gut was no different then it is now however he was not diagnosed with a gut issue of any form even tho at that time he had not had a solid diaper in at least a year. (and a fecal sample was taken)
i think the fact of the gut issues is far truer then you might realize and is simply not backed up by the numbers because parents are not reporting it as well as the labs are not identifying it.(personal opinion)
“Dedj
Chris said I have a disabled adult son (from an actual disease! Go figure!) and I know all too well the lack of services.
So he was saying that Autism is not a diease?”
Fascinating. Also of zero relevance to the question you were asked.
Don’t forget that it’s common courtesy to make sure that posts make sense outside of your head too.
Let’s ignore your opening comments, as it’s fairly clear you do not understand (or will not admit to) the problem with them, and let’s look forward to you substantiating your response to Chris’s questions with a direct quote or similar.
Toodle off and get to it.
Ms. McCarthy’s son has a seizure disorder, which is very serious and not autism. For all we know he may Landau-Kleffner Syndrome, something that my son was tested for (he could not speak, and he does now after over ten years of speech therapy, but it is often hard to understand). As Sullivan and I have mentioned, the young boy’s very serious seizure happened months after his MMR vaccine. So it was not caused by the vaccine.
Also, anti-seizure medications are not benign. They can cause developmental problems for a young child. But if her son does not take them, he could have more seizures, and since the seizures he has had have interfered with his heart, the seizures can very well kill him. My heart goes out to Ms. McCarthy and her son.
I know my son’s first seizures were not caused by vaccines, because they occurred before he had any vaccines. I also know his last very serious seizure was caused by a very serious, and now vaccine preventable illness. Yet, the pediatric neurologist would only say that his disabilities “may or may not be associated with a history of seizures.”
Diseases cause far more seizures than vaccines. And I know from personal experience that seizures are not trifling matters. LKS is one condition that is very much like autism, but is a seizure disorder. Now if anyone has real scientific evidence that vaccines are more dangerous than the illnesses they prevent, please present it.
Until then, I agree with Mr. Trudeau that Ms. McCarthy is a public menace.
Autism Mom, I still don’t understand what you are trying to say. Could you try using full sentences, please?
actually @sullivan it was mainly this one from Chris
Awww, it looks like I hit a nerve. Again, Mr. Bainbridge and “Autism Mom”, you are posting unsupported opinions with any evidence. And like Dedj say, it really has nothing to do with Jenny McCarthy’s unsupported opinions on vaccines and autism.
Plus, you both insulted many of the LBRB regulars who are autistic adults.
that implies that my position that autism is a real disability that opens us to daily physical attacks from our children is insulting autistic adults who are functioning.
this becomes a major issue anytime people with severly autistic children post or comment about major issues we deal with on a daily basis. It is not limited to this blog by anymeans however it is almost like there is a group who have infiltrated themselves into the autism community who find it is beneficial to keep those of us who have severly autistic children at odds with those who are near NT, which is something i think is not conducive to improving the accessibility of research because as long as the face of the autistic community is the high functioning or near NT then it makes the disability appear to be something that can be easily managed. This is not the case in a large percentage of cases and even leads some parents (I have seen them do it myself) hide the disability their child has, burying them in their house and not taking them out and asking any therapists that do come to see the child to hide all markings of where they come from and why.
there is another subgroup of severly autistic childrens parents who are quite open and willing to acknowledge that their childrens disability but find that we are told we insult those who are high functioning when we discuss our autistic childrens major behavioural issues and the long term care that they will require that is not available.
we love our children but we realize they have serious issues that will not be resolved without a complete change in the thinking regarding autism. without starting to look at autism as a major disability that is going to create a life long care issues and longterm justice issues if we do not develop a long term strategy aimed at ending the increases in incidents of autism we are seeing. depending on your source we are looking at just under or just over 1% of all children being born will be diagnosed with autism and we have to treat it like that whole group will be severly affected because if we dont then the focus will not be on ending the increase and if we do not end the increase then eventually (sooner rather then later i suspect) we will reach a point at which more people will be diagnosed with autism then not and at that point who will be around to find the cause then (who will be around to care for those that need it)
“as long as the face of the autistic community is the high functioning or near NT ”
Since when has the “face of the autistic community” been the “high functioning or near NT”? Seriously. The “face” for whatever that means is (a) parent activists and (b) children.
Mr. Bainbridge, please read this.
also something that generally find disturbing is the quick dismissal of anecdotal evidence.
while some say anecdotal evidence is not data and that is essentially true there is something to be said for it.
data is found in tightly controlled scentific trials while anecdotal evidence is found in real life. they are both valid in their place and it is anecdotal evidence that often leads to research ideas.
dismissing anecdotal evidence as does a serious diservice both to yourself and to those who actually have lived those situations
@Chris, yes I agree, seizures are a genuine problem for autistic kids, with epilepsy a common co-morbid diagnosis. We count ourselves very fortunate that our boys don’t have seizures (that we know of – NZ does not offer EEG testing for autistic children). A mum who is in the same behavior therapy program as my son told me how her boy would make good progress in therapy, only to have the gains ‘wiped’ every time he had a seizure, which must be awful. This is another area of research which will only suffer if resources are diverted to investigating Waker’s dodgy gut-brain theory.
I do hope young Evan is OK as well. I think I differ from a number of posters here who think he was mis-diagnosed. I doubt he would have been enrolled in the UCLA Young Autism Project without having a a series of assessments by qualified people (not Dr Gordon), and other kids in the YAP have made gains similar to Evan’s (not that they claim ‘recovery’ as Jenny does).
@Autism Mom. I only said one adult. Nine children, all under the age of 11 years. No gut problems (beyond normal childhood short-duration illnesses). Actually, I wouldn’t be surprised to see some increased issues with things like constipation – due to behavioral/eating issues which autistic children face. My boy had a bout of constipation a while back when he decided to only eat noodles for a while. We added soluble fiber to his juice, and he was fine.
Sullivan’s post sheds light on the issue – which end of the range is the accurate one though?
If the base rate of childhood gut issues is around 9% as the ref indicates, that is quite high and it is not too surprising that a number of parents would link gut issues and autism – particularly if they discount the impact of gut issues in NT kids. That so many autistic kids are in diapers for so much longer will ensure that parents are paying more attention to bowel issues in autistic kids than NT kids.
This is one area where research would be problematic – with referral bias, behavioral issues impacting bowel habits, different toileting needs between ASD and NT kids, and increased vigilance in ASD parents due to Jenny and Andy’s widely publicized (but dodgy) gut-brain hypothesis.
All these confounds would increase estimates of ASD gut problems, so for these reasons, I think the conservative figures are likely to be more accurate.
@chris i find the other blog actually quite good tho if i had to use my son on that scale saying 1 is a low_autism day and 10 is a high autism day i would say my son starts on 6 on a good day and can move to 8 at any given time without notice.
simply because my son has no other underlying issues like ID (i consider SIB to be a function of autism) i hesitate to rank his rougher days into the 9 or 10 range.
@McD i tend to disagree i suspect many people just consider it a fact of life when dealing with an autistic and don’t bother to report it.
i suspect the number is actually much closer to the 70%
McD:
I did not know this. Do you have a reference? He could have had an evaluation of autism, especially with the expansive definition in the DSM IV. The neurologist assured me my son did not have autism despite the lack of speech and the tics, but that was in 1991. He might have said something if it was just a few years later.
I don’t think EEGs are common in testing for autism. My son had them, well, because he had seizures. And for many children without speech it is common to get an EEG (typically a sleep EEG for LKS), in addition to a hearing test. (I recently saw a TED talk video from some neurology researcher who was advocating EEGs for kids with autism, because some of the kids she found had little seizures, and a couple of of her examples seemed to recover when put on medication — it was posted on the Healthfraud listserv a while ago, and I don’t keep those emails.)
Autism is now so broad in definition, it cannot be considered one disorder with one cause. Just like seizures. Or stroke (another article for Mr. Bainbridge to read):
McD:
Agreed. Human brains are complicated, and it really doesn’t take much to muck things up. And then again, sometimes they recover and/or compensate in what seem miraculous ways.
I just finished reading V. S. Ramachandran’s The Tell-Tale Brain. Years ago I read his A Brief Tour of Human Consciousness: From Impostor Poodles to Purple Numbers, in addition to almost every single one of Oliver Sacks’ books, plus both by Temple Grandin… and the very quirky Postcards from the Brain Museum by Brian Burrell. I think those provide more insight to autism, autism like conditions, seizure disorders and the like than pursuing the specious vaccine claims.
actually chris i find that a good article tho not necessarily for the reasons you wanted. I have not heard much about strokes being linked to autism so i have no concept on that particular issue whatsoever
however what was very interesting was the trend of the article and while the writer and i went in different directions. she falling into a “pit” etc, i went the other direction. I started to look for answers and found nothing but questions, half truth’s and brush offs. At that point i vowed one thing to myself. I will get to the bottom of what is behind this autism thing. I will do it regardless who does or does not want the truth found and if i have to do the research myself i will.
my son for all his issues is one of the most precious things in my life and on a good day (and even sometimes on a bad day) he can make us giggle because somewhere deep inside he knows when he is being funny and regardless of his behaviours, inside his eyes you can tell he knows when he is being the center of attention for good reasons and he really does enjoy it.
and from my personal perspective i really do believe that everyone should for a time have the opportunity to care full time for a disabled child. Once you do your outlook on life will fully and completely change. they know they are different and yet you can truly see that in many ways (outside the meltdowns) they really seem happier then all the rest of us.
So i will push on in my quest for answers and i will push on in my quest for funding because deep in my heart i want my son to have the ability to express that happiness to the rest of us and to this point he cannot and that lack of ability to communicate more then anything else is what causes the largest part of his behaviours
Bainbridge,
I think you really misread my piece. In no way did I go into the pit; I wrote that I understood how parents can.
KWombles,
I didn’t realize that he was referring to your blog. It was not a clear discussion. Rather a lot of that in various places, no?
As to falling into the pit, all I could think of in hearing that is looking up into the albino’s face…
Sullivan,
Yup, took me a minute to connect it, too, although I knew it was from the quote from Chris; a whole lot of muddy discussions going on in places. 🙂
Well, I have attempted to narrow back down to the claims of Ms. McCarthy. Mainly that I know my son’s seizures had nothing to do with vaccines, and it is fairly clear that seizures occurring months after the MMR are not related to the vaccine.
I also wanted to be clear I am very sympathetic to the very severe nature of her son’s seizure disorder, but that it does not mean I will not criticize her very wrong statements on vaccines. That is why she is a public menace. I think her celebrity status would have been better served bringing awareness to seizures.
I linked to Kim’s article because it was an example of more neurological issues, and that we do understand other parents. But I hoped he would have also seen Kim’s joy and pride in her kids (which is what many of her blog posts include). And to read the last paragraph:
It would be useful if folks did stay on topic, and try to be more clear as to who they are quoting, and what they are responding to.
“that implies that my position that autism is a real disability that opens us to daily physical attacks from our children is insulting autistic adults who are functioning.”
Yes, that is exactly what was insulting, derogatory and of very limited anecdotal or ‘real-world’ value. You’ve even just done it again.
When you present a complex disorder in such a mono-faceted catastrophising brutally over-simplified way, then people are going to take offence at both your condesencion and your attempts at forcing your anecdata to be accepted as the only valid way of looking at autism unless one has “no understanding of autism whatsoever”.
The fact that you pulled the very morally and logically dodgy trick of justifying it by saying that anecdata has its place (which doesn’t answer the concerns regarding the problems concerning accuracy that is present in anecdata) is of serious concern, and a very strong indicator that your anecdata should be treated with serious trepidation.
@Chris. Jenny writes about it in Louder Than Words. Jenny McCarthy started Evan at a private Behavior Analysis institute while he was on the wait list for UCLA, then he was with the UCLA program, then she moved to a home-based program (she could afford to do 40 hrs/wk one-on-one at home – not many others could).
So Evan was getting getting state-of-the-art behavior therapy, but to listen to Jenny, the diet and supplements are the take-home message.
To save actually reading the book, any number of online reviewers mention various aspects of the Behavior Therapy programs Evan was on. Although many have a go at her for not mentioning some of the less rigorous behavior therapies and only talking about ABA (Lovaas started the UCLA program, although the modern program bears little resemblance to the original, he is still pretty unpopular for his early use of aversives).
Here is a relatively easy to read review that mentions the behavior therapy programs:
http://www.myspace.com/438667840/blog
If you are up to trolling through some awful reviews on Amazon, a few people mention her discussion of ABA, but you have to dig through the rabid anti-vax fans:
Without all the supplement/diet/chelation mumbo-jumbo, a reasonable minority of kids respond very well to ABA (and some of the other Behavioral programs). And Evan was on an intensive program while very young – classic conditions for a good response. So people claiming – without having seen Evan or his medical records – that he ‘never had autism’ are in their own way as one-eyed as Jenny is in claiming to have healed him with bio-med. There is actually a far simpler hypothesis – Evan had a good (but non-miraculous) response to behavior therapy.
Thanks a bunch for the information. I stand corrected.
McD:
The local university has an experimental educational program where they try out various techniques for preschoolers with disabilities. The kids in the program get a small preschool, transportation in small buses, and various therapies (speech, OT/PT, pragmatic, play, etc): for absolutely no cost to the parent (it is funded through research grants, some by the school district and a very big annual auction).
A friend was a speech therapist there, and related to me that a parent was so pleased at the progress her child had made. Expecting to be thanked for all of her hard work, she was shocked when the parent credited the special diet and supplements, and ignored the hours of free real therapy the child received!
“Not because she is right or wrong but because she is one of the only public figures who is promoting autism regardless of the angle she is promoting. Any promotion by public figures needs to be embraced while still maintaining you as a group or an individual may hold a vastly different view point”
Okay, I can think of an esteemed man who made autism part of his life’s work. He had a compelling and tragic personal life, heroic in some ways. He wrote a famous book (non- autism related) used as the inspiration for a beloved Broadway musical (Into the Woods). Ladies and gentlemen, presenting Mr. Bruno Bettelheim. Shall we start the embracing?
“In our case our son is more along the lines of core autism however i also know those from the asperger’s and PDD-NOS groups (the PDD-NOS was not even identified as having difficulties till grade 4 while most autism is diagnosed by age 3)”
Average age of diagnosis for Autistic Disorder (3.1 years)
Average age of diagnosis for PDD-NOS (3.9 years)
(Mandell et al. 2005)
“data is found in tightly controlled scentific trials while anecdotal evidence is found in real life. they are both valid in their place and it is anecdotal evidence that often leads to research ideas.”
“Valid in their place” being the operative phrase. Otherwise “valid” becomes a slippery term applied to any expedient observation/thought.
@McD and Chris, I recently spent some time perusing a mummy blog who is following the DAN, bio medical, homeopathic route. When I pushed her she admitted to also using ABA therapy for her son. Yet never mentions it in her blog posts. She sings the praises of voodoo water, yet will never acknowledge the role of ABA in her sons progress. When I asked about this on her blog my comment was deleted. I find this to be an interesting phenomenon.
Interverbal:
Yikes! Information about his work in the last couple of decades have not been very flattering:
The Creation of Doctor B: A Biography of Bruno Bettelheim:
I remember reading long ago, when I still had a subscription to Skeptical Inquirer, and article by Martin Gardner called “The Brutality of Dr. Bettelheim.” It used to be online, but has disappeared.
“Yikes! Information about his work in the last couple of decades have not been very flattering:”
I’m sure that Interverbal brought his name up specifically because everyone would know him (Bettleheim) as a poor example of a researcher. But, Bettleheim would meet the criteria set out to support Ms. McCarthy:
““Not because she is right or wrong but because she is one of the only public figures who is promoting autism regardless of the angle she is promoting. Any promotion by public figures needs to be embraced while still maintaining you as a group or an individual may hold a vastly different view point”
In other words–clearly the criteria above are not valid. We don’t need to back everyone who is a public figure in autism.
Sharon said,
“When I asked about this on her blog my comment was deleted.”
Kev and/or Sullivan do this as well! Ho hum!
We do? We delete comments that disagree with us? Like you? Or JB Handley? Or AWOL?
“We do? We delete comments that disagree with us? Like you? Or JB Handley? Or AWOL?”
And I was told it was a back log with the filter ..stupid me..
AWOL,
I have deleted comments of yours that were repeats. There were also a couple that were particularly nasty towards another participant here.