Home > Parent Perspective, Science & Research, Vaccine Myths > Thoughts on World Autism Awareness Day

Thoughts on World Autism Awareness Day

April 2, 2014

Originally posted on Momentum - The Baylor College of Medicine Blog:

Dr. Peter Hotez and his daughter Rachel.

Dr. Peter Hotez and his daughter Rachel.

Today is the seventh annual World Autism Awareness Day, a day when organizations committed to autism research, advocacy, or policy promote awareness through events and public discussions.

As both a scientist and a father of four – one of whom is an adult child with autism (as well as other mental and physical disabilities) and a second who is actually doing her Ph.D. on the developmental psychology of autism – I am often asked to speak or provide public comment about the autism spectrum conditions, especially their causes.

Indeed, the fact that I lead a multidisciplinary team that develops neglected disease vaccines while also serving as President of the non-profit Sabin Vaccine Institute and Texas Children’s Hospital Center for Vaccine Development often places me front and center in the dialogue about purported links between autism and vaccines.

For me, the issue is…

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  1. Peter Holleran
    April 2, 2014 at 2:15 pm

    What does this author think genetics can cause an epidemic that in just thirty years has increased childhood autism from 1 in 10000 to 1 in 88 (1 in 58 boys) ?! What does this person think genetics means? Here is a more balanced view – endnote it does not claim that the only cause – or even the main cause – of autism is vaccines – but it doesn’t dismiss it entirely either with the cavalier attitude of this propagandist:

    http://articles.mercola.com/sites/articles/archive/2014/04/02/environmental-toxin-exposure.aspx?e_cid=20140402Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20140402Z1&et_cid=DM43719&et_rid=474330935

  2. April 2, 2014 at 2:43 pm

    Mercola is not a balanced source at all. He’s full of pseudoscience nonsense, and has at least three FDA warnings to stop peddling his snake oil and making illegal claims.

  3. Chris
    April 2, 2014 at 2:58 pm

    Mr. Holleran, did you actually click on the link and read the rest of the article? Did you notice the young lady in the picture with him? Tell us how she relates to World Autism Awareness Day.

    Dr. Hotez is a very interesting man who does research on diseases that affect those in developing countries. The following has a link to an interview he did with a couple of Columbia Univ. microbiology professors:

    http://www.virology.ws/2011/08/23/twip-29-neglected-tropical-diseases-with-peter-hotez/

  4. Chris
    April 2, 2014 at 3:05 pm

    Mr. Holleran, here is a list of sites that you should not rely on for accurate information:

    http://doubtfulnews.com/2014/04/doubtful-news-beyond-doubtful-list-of-no-go-to-sources/

    I hope you will find that useful.

  5. Lawrence
    April 2, 2014 at 3:08 pm

    @Peter – once again, you provide a source from a complete nut-job (who wouldn’t know Science if it came up and bit him).

    It is well known that once you start looking for something (i.e. Autism) you are going to find a lot more of it….especially when the criteria of diagnosis continues to change and expand…..I am beginning to get the feeling that we are classifying too many children at this point (those that are merely quirky or a bit socially awkward), when we should really be concentrating on the minority that really requires assistance…..

  6. Amanda
    April 2, 2014 at 5:56 pm

    Peter, did you also know that Autism was not even a disease or issue 30+ years ago…there was no name for it. So the fact that it has “grown” is due to the expansion of the symptoms that are now included in the definition. If the definition of a cold was limited to just a runny nose, there would be a limited number of people with it. Once you expand the symptoms list, obviously the people covered under that definition would grow.

  7. Mercuriyisbad
    April 3, 2014 at 2:49 pm

    Eventually, every child will be born with autism…..maybe then we can agree there is a serious problem with vaccines, fluoride, gmo and the accumulative effect of all of these toxins infecting the developing brains of infants.

  8. Lawrence
    April 3, 2014 at 3:08 pm

    That’s one of the most childish and unsupported comments I’ve ever seen……..we’ve seen little, if any change to the percentage of children diagnosed with “classic autism” whereas those on the outer edge of the spectrum (many of whom probably should not be considered autistic or lose their diagnosis over time) have been more readily identified, and again, probably over-diagnosed.

  9. Mercuriyisbad
    April 3, 2014 at 3:43 pm

    Once again you cherry pick data when it is convenient to support your fascist agenda. Stop down playing clear evidence of our children being poisoned…CDC evidence.

    “The US Centers for Disease Control and Prevention (CDC) has released new figures for autism prevalence in the United States. They now give a prevalence of 1 in 50″

    http://www.forbes.com/sites/emilywillingham/2013/03/20/autism-prevalence-is-now-at-1-in-50-children/

  10. Lawrence
    April 3, 2014 at 4:09 pm

    So, let’s ask the obvious question – why do we see such huge discrepancies in autism numbers depending on state? Since vaccine uptake is fairly uniform across the country, why do we see such wide ranges on a state by state basis?

  11. Mercuriyisbad
    April 3, 2014 at 4:15 pm

    Lawrence :
    So, let’s ask the obvious question – why do we see such huge discrepancies in autism numbers depending on state? Since vaccine uptake is fairly uniform across the country, why do we see such wide ranges on a state by state basis?

    “The numbers are not higher here because there are more autistic children,” said Walter Zahorodny, assistant professor of pediatrics at UMDNJ–New Jersey Medical School, who collected the New Jersey data. “We generally have better awareness and more sophisticated education services — that is probably why our estimates are higher.”

  12. Lawrence
    April 3, 2014 at 4:26 pm

    @MIB – exactly, identification has gotten much better……plus, a lot of children that would have otherwise, in the past, been classified as “mentally-challenged” are now given a diagnosis of autism.

    And we see more and more kids losing that diagnosis when they get older – since autism has always been about developmental delay, not developmental stasis (i.e. the explanation as to where all the autistic adults are).

  13. Narad
    April 3, 2014 at 4:31 pm

    Peter Holleran :
    What does this author think genetics can cause an epidemic that in just thirty years has increased childhood autism from 1 in 10000 to 1 in 88 (1 in 58 boys) ?!

    Do you not have some other comments to return to, or is the idea just to keep throwing out random assertions and moving elsewhere when they’re rebutted?

  14. Narad
    April 3, 2014 at 5:03 pm

    Mercuriyisbad :
    Once again you cherry pick data when it is convenient to support your fascist agenda.

    You lose by default.

    “The US Centers for Disease Control and Prevention (CDC) has released new figures for autism prevalence in the United States. They now give a prevalence of 1 in 50″

    The NSCH parent-reported survey data (PDF) are not directly comparable to the ADDM data, although they don’t much help your case either.

    Now, while you’re busy answering Lawrence’s question about geographical variability (you might want to check here), perhaps you could also identify the increases in the vaccine schedule that correlate with the ADDM data. Note that PMID 22253308 lays out the specific requirements to explain the California data, but they are generally applicable:

    “The primary drivers of the increases in autism diagnoses must be factors that: (i) have increased linearly year-to-year; (ii) aggregate in birth cohorts [i.e., be occurring in specific age groups]; and (iii) are stronger among children with higher levels of functioning.”

  15. Narad
    April 3, 2014 at 5:10 pm

    Mercuriyisbad :

    Lawrence :
    So, let’s ask the obvious question – why do we see such huge discrepancies in autism numbers depending on state? Since vaccine uptake is fairly uniform across the country, why do we see such wide ranges on a state by state basis?

    “The numbers are not higher here because there are more autistic children,” said Walter Zahorodny, assistant professor of pediatrics at UMDNJ–New Jersey Medical School, who collected the New Jersey data. “We generally have better awareness and more sophisticated education services — that is probably why our estimates are higher.”

    Oh, I missed this. Thanks for conceding the point, if likely by accident. Note also that this implies that the discrepancy must be occurring at an end of the spectrum where the functioning is so high that the diagnosis is far from apparent.

  16. Lawrence
    April 3, 2014 at 5:27 pm

    @Narad – yes, I think he misread that quote – because it does refute the point he’s attempting to make & instead tells us that we are only seeing more children with the autism diagnosis because we know what to look for (and the criteria has expanded so much).

  17. Melinda
    April 4, 2014 at 12:47 pm

    I am a speech-language pathologist and have worked in the same elementary school for 25 years. I work with a highly experienced team of professionals who have dedicated their lives to serving to children in public schools. We are not concerned with reimbursement from medical insurance. We do not receive any profit from the marketing and sales of quick-fix, cure all programs. Our work is not dependent on grants or the results of our research. Our work will not make headlines or sell magazines. It will not go viral and be used as a link for web advertising.

    I have never contributed to any on-line debate on this topic and have no desire to do so again. However, after reading the comments above I had the feeling that I was a child at a cocktail party, l listening to a room full of adults argue about the statistics of neglected children. What is the point? Why argue about headlines and inconclusive studies? Does anyone really think that statistics will give us an answer? Or is this just a way to avoid fear.

    Here is the simple truth. No jargon. No numbers: The children that are enrolled in my classroom today, have very different needs as compared to the children who were enrolled 15 years ago. This is not because, back in the day, there were more children in institutions. It is not because my former students really had the same needs and I just don’t remember them very well, or that I just used different terms to categorize children. I don’t even use those terms unless I have to communicate with someone who needs big words to feel important. It is not because our busting- at- the- seams, school launched an advertising campaign so we could stretch our budget just a little bit more. It is most certainly not because the hard working families of these beautiful children are just following a popular new trend in in parenting.
    I will agree that , over the years, the language that has been used to describe behaviors or skills has changed. More contemporary, politically correct labels have been created. However, those of us who have actually been working with children in a public classroom did not participate in that project. We don’t have time to publish, do research, attend committee luncheons, or even go the bathroom. We teach. We observe. We take data. We spend more time with the children in our classrooms than their parents do. We don’t need to debate statistics. We know. We are not concerned about what the popular public trend is. We live it.

    So here is a fact: We have seen a dramatic increase in children being referred to us who demonstrate significant challenges in sensory processing, motor planning and communication. These children have striking and dramatic differences in the way that they play and interact with people in their environment. Their neurological and biological systems are so overwhelmed that many resort to engaging in repetitive behaviors and routines in order to protect themselves from the constant bombardment of language and sensations that they can not interpret. If they had been here 20 years ago I would remember.

    On the other hand, many of these children demonstrate academic skills that are far more advanced than their classmates who do not flap their hands, and are able to look adults in the eye. So statistically these children could help to create a new “norm curve” for academics. The possible result could be that my “typically developing” child could then be statistically, delayed or even worse…..atypical.

    Each child is an individual. Knowing how many children exist in the population, that exhibit similar behavior patterns to the individual, is as useful to me as knowing how many children used a binky or picked their nose. It is not about seeing children as a percentage of the group. It is not about identifying everything that is different or lacking and changing it. It is about finding a way to see the world through a child’s eyes. It is about understanding that the “norm” is not necessarily better, and different is not a disease. Maybe we need to just understand.
    I do not work with statistics.
    I do not work with diagnoses.
    I do not call my students Asperger’s
    or ASD, Classic or rock n roll Autism.

    They are children
    They have names

  18. Michael
    April 4, 2014 at 12:53 pm

    The autism rate was only one in every 10,000 in the 1970’s. The definition of autism was broadened in 1994 to include other behaviors doctors were seeing in children.
    1995 1:500
    2001 1:250
    2004 1:166
    2007 1:150
    2009 1:110
    2012 1:88
    2013 1:50
    If the jump in the autism rate was a result of better diagnosing, the rate would have leveled out between 1995 and 2000, after the definition was changed in 1994. That has happened.
    Interestingly enough, they just changed the definition again this year so that fewer kids will be diagnosed with autism.

  19. Lawrence
    April 4, 2014 at 1:07 pm

    @Michael – as people get better at diagnosing children, based on their experience with a set of criteria, they will be able to catch children that they might have missed before…..

    Again, explain exactly why we see huge differences in the numbers on a state by state basis, when vaccine uptake is fairly uniform across the country?

  20. Michael
    April 4, 2014 at 2:00 pm

    It’s been 20 years since the new criteria Lawrence. Plenty of time to level out.

    There are a number of reasons why numbers vary from state to state. The first is that each state has its own way of coming up those numbers. Utah for example (highest state) looks through medical records and counts some kids that haven’t been officially diagnosed. Also, vaccines aren’t the only culprit causing the issues. It’s about genetics and other environmental toxins. So depending on the area you live and your lifestyle and your genetics, these all play a part. Pollution, food, medication, and lots of other factors contribute to the issues.

  21. Michael
    April 4, 2014 at 2:02 pm

    Melinda, thanks for sharing your story. It makes a lot of sense.

  22. Lawrence
    April 4, 2014 at 2:07 pm

    Except that there is no evidence of that…..care to provide any?

    For example, we know it isn’t vaccines:

    http://www2.aap.org/immunization/families/faq/vaccinestudies.pdf

    So where is your proof that is it anything else besides genetic?

  23. Michael
    April 4, 2014 at 2:22 pm

    Nice chatting with you Lawrence.

  24. Chris
    April 4, 2014 at 2:30 pm

    Melinda: “So here is a fact: We have seen a dramatic increase in children being referred to us who demonstrate significant challenges in sensory processing, motor planning and communication.”

    When my oldest was three years old he could not speak, liked to place things into lines and had tics. I was assured by the pediatric neurologist that he did not have autism. That was in 1992. What changed?

    He was in a special ed. preschool that focused on kids with speech disabilities and sensory integration issues. Lots of those kids did flapping, and a couple were diagnosed with hyperlexia. None of them were considered autistic.

    With the work of the fantastic team of that very special ed. program (which was started as a direct offshoot from the hard of hearing program because they kept getting kids who could not speak but could hear), he finally started to attempt to speak and was mainstreamed in kindergarten. He received at least ten years of speech therapy (school and private), and gets disability services at the local community college. He is also too functional to qualify for the state’s department for development disability, even though his speech is still hard understand, he does repetitive stims, walks with an abnormal gait, etc.

    When he was a high school senior the school psychologist suggested that he was actually autistic. Though if he had that particular diagnosis they would put him into their autism class, and he would actually lose services. He was actually better off getting the services he needed, and not what was dictated by a label.

    In the early 1990s it was actually quite difficult to get kids who could not do “something as simple” as not talk referred for early intervention. We were “lucky” in a way because his development was being watched closely due to a history of seizures, the last major one as a consequence of a now vaccine preventable disease.

    Even trying to find information on communication disorders was difficult because it was mostly on hearing impairments. Often I would get comments like “my sister’s third cousin sixth kid could not speak when they were five, ten, twenty years old and they are just fine now” or that Einstein could not speak at age three, five, fifteen, etc (I hate that myth, and he was speaking at age two). I even got that from the librarian when I requested the library system purchase Childhood Speech, Language & Listening Problems: What Every Parent Should Know by Patricia McAleer Hamaguchi in 1995.

    I also remember noticing kids in playgroups, etc that seemed to be struggling with speaking. Whenever I mentioned that they may need to be evaluated the mothers would tell me that their doctor said their children were just fine. Later one of them was seeing the same wonderful school SLP as my son. At my daughter’s preschool I gave one mother a list of free and low cost programs because her son was very speech delayed. She refused to call anyone, even when the preschool teacher tried to refer her to services. When their child entered kindergarten, the school district had to explain to them that he needed services, which they provided.

    I have also seen changes, but from a different perspective.

  25. Melinda
    April 4, 2014 at 3:03 pm

    Chris:
    I appreciate you sharing your story. You keep using the word autism. As I mentioned, I don’t use labels. My perspective is totally based on kids and their needs and nothing else. In my school, your child would have been referred to me with or without any type of diagnosis. The fact still remains that there has been a huge increase in the amount of children with significant challenges in sensory processing and motor planning and communication. It is not a “better diagnosis” problem; it is a real life and real issues in my school.

  26. Lawrence
    April 4, 2014 at 3:15 pm

    @Melinda – and how many of these children are now main-streamed, as opposed to being sent to special schools, as they were in the past (or not educated at all)?

    One of my good friends, who was an autism mentor (she was assigned to an autistic child to help him through his day at school), told me about another child that was main-streamed, who was barely functional & had no ability to speak or interact with others – yet, she was placed in a regular classroom……

  27. Narad
    April 4, 2014 at 3:18 pm

    Michael :
    Also, vaccines aren’t the only culprit causing the issues. It’s about genetics and other environmental toxins. So depending on the area you live and your lifestyle and your genetics, these all play a part. Pollution, food, medication, and lots of other factors contribute to the issues.

    Once again: “The primary drivers of the increases in autism diagnoses must be factors that: (i) have increased linearly year-to-year; (ii) aggregate in birth cohorts [i.e., be occurring in specific age groups]; and (iii) are stronger among children with higher levels of functioning.”

  28. Melinda
    April 4, 2014 at 4:31 pm

    Lawrence:
    They weren’t sent to special schools in the past as we didn’t have those resources then and we don’t have them now.

  29. Lawrence
    April 4, 2014 at 4:34 pm

    @Melinda – they were either kept at home or sent to state institutions…unfortunately, this country has a very sad history on how we’ve treated the mentally-disabled, especially children.

  30. Chris
    April 4, 2014 at 4:50 pm

    Melinda: “You keep using the word autism.”

    I used it twice. First that I was told he did not have it, and second if he did have that diagnosis he would have lost services.

  31. Chris
    April 4, 2014 at 5:05 pm

    I was told my my son’s special ed. preschool teacher that before the 1970s the kids she had in her class would have typically been institutionalized, or refused access to the public schools.

    I once had a conversation with a mom of a four year deaf child who was having a bit of trouble in her district in another county. Her state legislator actually told she should keep him out of the public school and send him to the still operating (with very reduced population) state school for the deaf.

    A couple of books on the subject:

    Train Go Sorry: Inside a Deaf World by Leah Hager Cohen
    The Willowbrook Wars by Sheila M. Rothman and David J. Rothman

  32. Melinda
    April 4, 2014 at 5:06 pm

    Lawrence:
    Assuming you are correct and some children were kept home or sent off to state institutions, and now those same kids are being sent my way, that still wouldn’t account for the dramatic increase of kids needing my services.

    Chris:
    I didn’t mean to offend you. I guess I don’t understand your point. It seems to me that you are relating your experience to whether a child has a diagnosis of some type or not, and I was only assuring you that is not the case.

  33. Melinda
    April 4, 2014 at 5:09 pm

    Chris:
    My experience has nothing to do with pre 1970’s. It’s from late 1980’s and the time table I am talking about is really from the 1990’s to now.

  34. Lawrence
    April 4, 2014 at 5:37 pm

    @Melinda – which would neatly coincide with the mass mainstreaming of children that would have normally been fully segregated from the regular student population, and of course, the identification of children that required assistance, whereas in the past, they would have been ignored…..it isn’t about an overall increase, as it is a recognition that more individuals require assistance.

  35. Chris
    April 4, 2014 at 5:42 pm

    Okay, then after the Individuals with Disabilities Education Act. Lawrence is referring to that time.

    My point is that in the early 1990s there were many many kids who were not given the early intervention they needed, and were not diagnosed. Folks like Michael, Age of Autism, and the others who are pushing “autism epidemic” don’t seem to realize that kids like mine who is actually less functioning than some of their poster children (like Jake Crosby), are the ones who today would get the “autism” label.

    Many times if parents expressed concerns the were ignored and never referred for intervention. Remember, this was before the internet. None of those kids would have been in your special ed. program for most of the 1990s.

    Also, if you are speech pathologist I doubt you could actually give that label to any child. The autism “label” is most often given by developmental pediatricians and pediatric neurologists. There are school educational psychologists who will give a kind of educational label in order to get the child in a specific program. Actually it has been noted that those of paler complexion and higher economic status have higher prevalence of autism diagnosis, mainly because they have the means to seek it out.

    And sometimes, probably because of the internet, parents seem to seek out a diagnosis. There is couple we have known since college whose high school aged child has PDD-NOS, along with a bipolar disorder. So they have been through the ringer (the state provided him with a homeschooling curriculum). Now due to their local disability social group they now have custody of another young man whose mom claims has autism. The reason is that his family moved to another state, and he refused to go. But unlike our sons, this young man drives, gets good grades as a high school student taking community college courses and has a social life that includes a girlfriend. Obviously something is very skewed with his “autism” diagnosis. Oh, and he is apparently thriving away from a parent who limited his diet, had him on supplements and controlled his life.

    Also, a couple of other book suggestions:

    Not Even Wrong: A Father’s Journey into the Lost History of Autism by Paul Collins
    Unstrange Minds: Remapping the World of Autism by Roy Richard Grinker

    You said: “Also, vaccines aren’t the only culprit causing the issues.”

    What about diseases causing issues? My son had a very serious seizure from a now vaccine preventable disease. What causes more seizures the vaccines or the diseases? Where is the evidence that the vaccines caused more harm than the diseases, like measles, rubella, Hib, etc.

    The 1960s rubella epidemic caused a spike of children with profound disabilities. Congenital Rubella Syndrome is a known cause of autism, and that is on the milder end of the spectrum of what CRS causes. A couple of books on that epidemic:
    Deaf Like Me by Thomas S. Spradley and James P. Spradley
    Dangerous Pregnancies: Mothers, Disabilities, and Abortion in Modern America by Leslie J. Reagan

  36. Melinda
    April 4, 2014 at 5:44 pm

    Lawrence:
    I couldn’t disagree with you more.
    As I mentioned several times, we have never labeled our children, if they required assistance, we would give it to them. No child has ever been ignored on my watch.

  37. Lawrence
    April 4, 2014 at 5:49 pm

    @Melinda – after the ADA was passed in 1990, those children could not “legally” be ignored anymore, which neatly coincides with your experiences….before that, again, those kids were, almost en-masse, kept out of public schools.

    Since that time, we’ve vastly expanded what we consider to be “treateable” mental conditions, including autism and other developmental delays, so lots of kids who otherwise would have just been considered “quirky” or slow, are getting more and more attention and services.

    Your opinion covers just a small segment of the overall picture – one that doesn’t show an overall true increase, but instead a great recognition (and in the case of autism, probably an over-recognition) of those children.

  38. Melinda
    April 4, 2014 at 5:52 pm

    Chris:
    Again I appreciate your story, but it doesn’t have anything to do with my professional experience in my school. We don’t deal in labels, parents have not been ignored, and I guarantee you your child would have been in our Special Ed program. Also, I never said anything about vaccines. I think you may be a little confused Chris.

  39. Melinda
    April 4, 2014 at 5:55 pm

    Lawrence:
    Those kids were not ignored before. You think that because some laws were put in place they forced us to start caring? What percentage of kids do you propose were kept out of schools? 1%? That doesn’t account for the dramatic increase.

  40. Chris
    April 4, 2014 at 6:08 pm

    Yes, I apologize. That remark was made by Michael.

    Of course, another part of my point is that pediatricians in the 1990s were not referring kids to be evaluated by the school district’s early intervention programs (is it still called “ChildFind”?). So they were missed, and possibly had worse outcomes.

    Trust me, I really tried with one set of parents to get their son speech therapy as a three year old, but they refused.

    I am placing my money on the internet. I have been a part of online disability forums since the mid-1990s. I have seen lots of changes. Many of the good like being able to find services, but many are very very bad like the massive amount of pure dreck that is out there.

  41. lilady
    April 6, 2014 at 12:21 pm

    @ Melinda: Sorry you have some ill-informed opinions about the classification of children with ASDs.

    Prior to 1975, when PL 94-142 (The Education of All Handicapped Children Act), “handicapped” children were not entitled to a free, appropriate education in the least restrictive surroundings, paid for with public tax dollars.

    Children with severe/profound multiple disabilities, who had extensive needs and who were medically fragile, were “excluded” from the requirement that they attend school. The Committee on the Handicapped in each school district was formed and composed of the school psychologist, at least one special education teacher, a speech/language therapist, and the parent of a handicapped child residing in the district. Each parent of a disabled child was and is, invited to attend the yearly IEP planning session for their child…in order to have input into the services their child would require and would be offered. At a later date, PL 94-142 was incorporated into the IDEA legislation.

    Unless you work for a private school, which pays its staff through private donations and assessing parents for the child’s tuition and therapies, every child in your school has a “label”. Those “labels” are used, along with the child’s IEP, to provide reimbursement for your services from the local School district, the State and the Federal government for the costs to educate the child and the costs for therapies, as indicated on the child’s IEP.

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