A shocking new online survey has found that nearly 90 percent of autistic children in the Bay State have been targeted by bullying so violent and ruthless that a state lawmaker says teachers and school systems must be held accountable.
All kids are bullied to some extent, but I have no doubt that autistic kids get much more than their share of bullying.
I have to admit that the survey did not use the most rigorous methods as it was taken to convince legislators:
About 400 Massachusetts parents responded to the online survey between Sept. 23 and Oct. 12. The survey was prepared as part of an effort to pass legislation requiring that autistic children be taught bullying coping tactics as part of their individual educational plans.
With that acknowledgment, I’ll say it again, autistic kids get bullied more than typical kids. In some cases a lot more. A lot of us feel like our kids have great big bulls-eyes painted on them. Our kids have a hard enough time coping in schools.
I hope the Massachusetts legislature takes notice. I don’t know if including “bullying coping tactics” into IEP’s is the best response, but I know that doing nothing is the wrong response.
Hyperbaric Oxygen Therapy (HBOT) has grown in popularity over the last few years. This growth has occurred without any evidence that HBOT is at all beneficial.
A recent study, published in the journal Research in Autism Spectrum Disorders entitled Randomized trial of hyperbaric oxygen therapy for children with autism, explores this question.
Children were given 80 1 hour sessions in a Vitaeris 320 inflatable chamber (a model used commonly in HBOT treatment). 6-10 sessions/week were performed. Children were split into two groups matched by age and number of ABA hours already received. Parameters like supplement use and diets remained unchanged during the time of the study. For the treatment group the chambers were inflated to 1.3 atm, with enriched oxygen air (24-28% O2, compared to 21% for regular air).
The children were given multiple assessments:
All assessments were conducted by trained assessors who were blind to group assignment. To maximize the study’s ability to detect change in any symptom area relevant to autism, a large variety of assessments were used, including the following: the ABC (Aman & Singh, 1994), ADOS (Lord et al., 1999), Behavior Rating Inventory of Executive Functioning (BRIEF; Gioia, Isquith, Guy, & Kenworthy, 2000), Clinical Global Impression Scale (CGI; Guy, 1976), Parent Stress Index (PSI; Abidin, 1995), Peabody Picture Vocabulary Test (PPVT-III; Dunn & Dunn, 1997), Repetitive Behavior Scale (RBS; Bodfish, Symons, & Lewis, 1999), SRS, Vineland Adaptive Behavior Scales—Second Edition (VABS-II; Sparrow, Cicchetti, & Balla, 2005), and the Beery-Buktenica Developmental Test of Visual-Motor Integration—5th edition (VMI-5; Berry and Berry, 2004 K.E. Berry and N.A. Berry, The Berry-Buktenica developmental test of visual-motor integration: Administration, score, and teaching manual, NCS Pearson, Minneapolis, MN (2004).Berry & Berry, 2004). The ADOS, BRIEF, PPVT-III, SRS, VABS, and VMI-5 were administered pre and post-treatment. The ABC, CGI, and RBS were administered weekly. The PSI was administered four times, once at baseline, twice during treatment, and once at completion.
The study was relatively small, with 46 participants.
Forty six participants began the study and 12 withdrew, resulting in 18 previous HBOT participants and 16 placebo participants completing all 80 sessions and follow-up measures. The primary reason reported for withdrawal was the travel required to the clinic. One participant in the placebo group withdrew after having a seizure for the first time. Mean participant age was 6.18 (previous HBOT 6.11; placebo 6.25) and mean number of ABA treatment hours per month was 109 (previous HBOT 114.7; placebo 103.3).
I won’t go into details about the specific outcomes, but the conclusion was pretty straightforward: HBOT had no effect.
No significant differences between the previous tHBOT and placebo groups were found on any of the outcome measures. Thus, the results of this study indicate that previous HBOT delivering 24% oxygen at 1.3 atm did not produce a therapeutic effect for the children who participated in our study. Therefore, previous HBOT at this dose is not recommended for the treatment of ASD symptoms.
I found it interesting how they referred to a previous HBOT study by Rossignal (another prominent member of the autism alternative medical community):
The results of this study corroborate the findings of the only other published study on previous termHBOTnext term which included a control group (Rossignol et al., 2009 D.A. Rossignol, L.W. Rossignol, S. Smith, C. Schneider, S. Logerquist and A. Usman et al., Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial, BMC Pediatrics 9 (2009) 10.1186/1471-2431-9-21.Rossignol et al., 2009)—albeit, not the study authors’ interpretations of their findings. In both the Rossignol et al. (2009) study and the current study, both treatment and control groups improved over time, but the difference in improvement between groups appeared insignificant. In addition, the current study employed dependent measures which were far more comprehensive than in previous research on previous HBOT for ASDs, thereby increasing the probability that a therapeutic effect would have been detected if indeed one had been present.
Yes, the current study is consistent with the Rossignol group’s results, just not their interpretation.
Commentary:
There was much discussion and excitement earlier this year when the Rossignol group study came out. Do’C at the Autism Street blog compiled a list of many of the skeptical discussions. There has not been anywhere near the interest in the newer CARD study.
Will this mean the end of HBOT treatments for Autism? I sincerely doubt it. Take a look at Dr. Bradstreet’s website (Dr. Bradstreet being one of the coauthors of the current study showing no effect). The first page of the site still links to the older study by Dr. Rossignol’s group (claiming that HBOT is effective) and not his own study (which shows HBOT to be not effective).
Of course, it is all the more complicated since Dr. Rossignol is also one of the ICDRC doctors. The alternative-medical community is a pretty small pond, isn’t it?
Back to the question: will this mean the end of HBOT in autism? I wish I could make bets this safe. Of course not. No alternative therapy is abandoned. As shown above, one of the authors of this study showing that HBOT is not effective for treating autism and he hasn’t stopped.
Guest Blog post by Dawn A. Crawford, Communications Director at the Colorado Children’s Immunization Coalition.
At the height of the H1N1 scare it’s easy to forget why we are vaccinating children in the first place. We vaccinate children with the flu vaccine and all childhood vaccine to keep them healthy. We vaccine children to keep kids out of hospital ERs. We vaccinate children to keep them playing and, simply, being a kid.
This Thanksgiving season the Colorado Children’s Immunization Coalition (CCIC) has created a simple and free way for parents to share their gratitude for healthy children with the CCIC Health Kids Thank-A-Thon.
Parents, grandparents and mommies-to-be are encouraged to submit gratitude statements, photos, videos and blog online explaining why they are grateful for a healthy child on the Health Kids Thank-A-Thon website – http://www.childrensimmunization.org/thanks.
From these submissions, CCIC will spread gratitude for healthy kids all Thanksgiving weekend long (November 26 – 29) by tweeting parent’s gratitude on Twitter, creating a video for YouTube and updating their Facebook Fan Page.
How to Participate
1) Visit the CCIC Healthy Kids Thank-A-Thon website to tell us why you are grateful for your healthy child. We encourage you to include a picture of your family or a video of your healthy child.
2) Spread the word to co-workers, patients, neighbors, and friends by posting this flyer and forwarding this blog post
All submissions are due Monday, November 23.
Make sure to join CCIC for the Thanksgiving weekend in sharing gratitude for all our healthy kids.
Screw autism. Over in the US, yet another dangerous ailment was triggered by the dangerous, untested, unnecessary [insert blah blah here] flu vaccine….
Only two weeks after receiving his influenza vaccine, “Reuben” (not his real name), was struck with what he is convinced is an adverse event to the vaccine (also known as a “vaccine injury”) . Reuben began to notice the symptoms when it was painful to walk, noticed excess sweating, a foul smell coming off his skin, and saw his skin coming off in flakes. Numerous treatments with all sorts of home remedies were unable to help. Members of his family and friends began shunning him for his condition.
“I’m sure it was the flu shot,” Reuben said. “What else could it be? I didn’t take any medication, eat anything abnormal. In fact, the only thing I did different right before I got this was start a gym membership… You know… To be more healthy. I’d get up early, go work out, take a shower there and head to work. Life was good. And now this? I can’t even go to the gym because of this. Everyone stares at me as if I’m a leper.” Reuben took off his shoes to show his condition. The skin on his feet was flaking, oozing pus and blood. The odor was very foul. “I keep asking my doctor if he’s going to report it to the CDC,” Reuben says with frustration. “He says it wasn’t the flu shot. I just don’t believe him. Have you seen the crap they put in those things?” Reuben sighs, takes a breath, and says, “Maybe Jenny McCarthy will come help me like she helped that girl in Virginia?”
Athlete’s foot is a fungal infection of the skin of the feet. The fungus, Tinea pedis, thrives in warm, moist, dark environments. Feet that are covered up in shoes all day, without socks or other methods of absorbing feet sweat, are the perfect environment for T. pedis. In most cases, the condition resolves once the environmental conditions of the foot change through drying the shoes, wearing more absorbent socks, or applying foot powder. Over-the-counter and prescription medications are best to treat the condition fast and without side effects. In some people, such as those who are immune-compromised, the infection may spread beyond the feet. People should contact their health care provider if they notice that the infection has spread beyond the feet or does not get better after attempting to remedy the environment or applying medication.
Tinea pedis is acquired through contact with contaminated surfaces or sharing socks or shoes. Locker room and public shower floors are main sources of athlete’s foot infections since they are always moist, and many people with the condition may walk on them. To avoid acquiring athlete’s foot, keep your feet dry, use sandals or shoes on locker room or public shower floors, and use well-ventilated shoes. If you have certain conditions like heart disease or diabetes, pay special attention to any irritation of the feet or extremities as these may be a sign of poor circulation rather than an infection.
There have been no documented cases of athlete’s foot associated with the flu vaccine. What Reuben exhibits is a clear case of “recall bias”, where the correlation of the vaccine followed by an event like the foot infection is interpreted as being related. There is a principle in epidemiology and biostatistics which states that “correlation does not mean causation”.
Such a principle, however, is abandoned by certain groups where anything and everything that happens after an immunization is directly associated with the immunization no matter how biologically, statistically, or realistically impossible it is. If you feel that you have been harmed by a vaccine, please seek advice from your health care provider first and foremost. They have the training and knowledge that will never be replaced by celebrities, blogs, or any other anecdotal information.
Autism Speaks recently announced that the Interagency Autism Coordinating Committee (IACC) included vaccine research studies into the objectives of the Strategic Plan. I’m sure many people who read their press release are thinking that the vaccine-autism research will definitely be funded. But, is this accurate? The answer is no.
According to the press release and the Autism Speaks website:
Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.
Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research. “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer. In addition, the two research objectives proposed that specifically called for additional vaccine research were not approved.
Also:
Singer added that some groups seem to be misinterpreting the inclusion of the word “vaccines” in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. “Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting,” Singer said. The IACC will continue its work on the plan at a meeting on December 11, 2009 with the goal of finalizing the revised plan by January, 2010.
It appears that Autism Speaks is placing a fairly major spin on a single action taken by the IACC. Again from the ASF blog:
The IACC also voted unanimously to add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders).
Compare that to the Autism Speaks announcement:
IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research
Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research
Or, worse yet, the first line of their press release: “Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”
As I noted above, I am very confident that many people reading the announcement are expecting autism-vaccine research to be funded.
But this isn’t a “vaccine research objective”. This isn’t calling for “vaccine research studies”.
What it is, is an objective that mentions vaccines. It is a very important distinction. Take a close look, the objective does not call specifically for a vaccine project to be funded. It doesn’t even call for immune challenges to be funded. These are just listed as possible examples.
This is a small example of why the IACC needs to be very careful in how and if they discuss vaccines. Groups such as Autism Speaks can act incredibly irresponsibly in spinning any statement including the word vaccines.
Autism Speaks has announced (possibly incorrectly) that the IACC (Interagency Autism Coordinating Committee) has included vaccine language in the Strategic Plan.
In enacting the Combating Autism Act (CAA), Congress intended that the federal government examine potential links between vaccines and autism. During the Senate debate over the CAA, Mike Enzi, Chairman of the Senate Health, Education, Labor & Pensions Committee, instructed that “no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.” 152 Cong. Rec. S8772 (Aug. 3, 2006). In the House, Joe Barton, Chairman of the House Energy and Commerce Committee, was equally clear: “[T]he legislation rightfully calls for renewed efforts to study all possible causes of autism – including vaccines and other environmental causes… The important thing to understand is that there are no preconceived notions contained in this bill; the bill language is clear that we should follow every avenue that science opens to us in searching for a cure.” 152 Cong. Rec. H8787 (Dec. 6, 2006)
Beyond this clear directive of the CAA, Autism Speaks supports rigorous, evidence-based scientific research onto all aspects of autism from potential causes, including both genetic and environmental factors, to diagnosis and treatments. As such, we strongly urge that further vaccine safety research be included in the Strategic Plan for Autism Spectrum Disorder Research. Comprehensive “good” science should be the standard in all areas studied and there are aspects of vaccine safety research that have not yet been, and should be, considered.
It is also essential that all scientific research recommended by IACC and funded by the NIH be rigorous and evidence-based to engender the trust of the scientific, medical and entire autism community. Without a solid foundation that supports confidence in scientific conclusion, the entire portfolio of scientific research is at risk of losing community trust. Further, vaccine safety research will increase both the level of confidence in the safety of our nation’s vaccine program and the rate of participation, which is absolutely crucial for the prevention of serious infectious diseases.
Autism Speaks calls on the IACC to consider the importance of evidence-based science, trust, and to remain true to the critical legislative purpose of the Combating Autism Act and asks the IACC to include vaccine safety research in the strategic plan.
The statement that vaccine research is a “clear directive of the CAA” is, simply, false.
The CAA (Combating Autism Act) does not include the statements by congressman Barton and Senator Enzi are part of the congressional record. They are statements made by the individual legislators.
They are not a part of the Combating Autism Act, much less a clear directive of the Act.
Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.
I’m just not that creative. But I am able to lean on other people’s creativity, which I’ll do here in this blog post. First I’ll restate: First I’ll restate what I have said before: I didn’t like the way “I am autism” put the focus on pretty much everyone except the autistics. I didn’t like how it framed autism in terms of how it costs those of us non autistics. I didn’t like how the heroes of the story weren’t the autistics themselves.
I think a commenter to this blog, Emily reflected much of my views when she commented,
I’m no warrior. I’m doing the job I signed on to do when I decided to bear children. I took on that responsibility—whatever it entailed—when I, an adult, made that decision. There’s nothing warrior like or heroic in that. Heroes face fear and move forward in spite of danger. I can’t lay claim to that.
But these kids who fight every day to learn or bear the inputs around them or self regulate, who live minute by minute in ways that the neurotypical could only vaguely understand if they were packed into a echo chamber full of revving jet planes, these kids and autistic adults are the real fighters. I think of the severely affected children I know, how I’ve known them to work up the courage to do something terrifying to them, something that to a neurotypical would be barely noticeable. I’ve watched these kids hesitate, wait, stim, think, and then rush headlong with extraordinary bravery into it. That’s a hero.
Many people don’t like the way I am framing this. They say that people like me downplay the difficulties of being the parent of an autistic child. I point them to a recent post where Kev noted:
We all struggle. Its damned hard, we all lack services, all autism parents all over the world
Yes we all struggle. Is this supposed to be news to those outside the autism communities?
Guess what, I was a burden to my parents. I cost them money. I cost them heartache. All this even though I am not autistic. I was just their kid.
And, yet, somehow, they never once spoke of me in terms of how much I cost them.
Why should I treat my kid differently?
I am constantly reminded of the old movie Boys Town, and the real life Boys Town that exists to this day. If you remember the movie, you probably know where I am going with this. I admit, the image is a bit sappy by today’s standards, but I keep flashing on the statue and the slogan that Father Flanagan used for Boys Town: “He ain’t heavy, he’s my brother“.
Does anyone really believe the little kid isn’t heavy?
If that doesn’t make the point, let me put it another way. How many disability groups are there where the parents focus attention on themselves and the how much of a burden their children are?
One of the arguments often made is that Autism gets lower private funding that pediatric aids, juvenile diabetes…many other conditions. If those communities can pull in more money than the autism communities, we certainly don’t need to spend our children’s dignity in a quest for funding.
I always try to write as though my child will someday read and understand what I have written. Whether it will come to pass or not is irrelevant. Why should I write differently if I think my kid won’t understand what I say?
If this should come to pass and my kid reads what I have written, I realize that I will have to explain to my kid why at times I have been childish or lost my temper. But my main goal is that I hope to keep to a minimum the number of times I have to apologize for disrespecting my kid.
Once again, I will rely on someone else’s words, words from another songwriter. After I listened to “I am autism” I had to listen to this song. I listened over and over again. The song? “For Good” from the musical Wicked by Stephen Schwartz.
Here are the lyrics:
(Glinda) I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good
(Elphaba) It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend…
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I’ve been changed for the better?
But because I knew you
(Glinda) Because I knew you
(Both) I have been changed for good
I have not said that my life is the same as if I never had a family. My life is also different than if my child had somehow been someone else, someone not disabled.
Like any parent, I have been changed by having a family. But when I go, my message to my child is simple: your impact on me is measured in the handprint you left on my heart. You changed me, for good.
If you haven’t heard the song, here it is as sung by Lea Salonga and Jennifer Paz
The Interagency Autism Coordinating Committee will be meeting tomorrow (November 10th) “to discuss recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.”
You can listen in with
USA/Canada Phone Number: 888-577-8995
Access code: 1991506
Here’s the agenda:
Time Event
8:30 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:10 Public Comments
9:30 Approval of October 23, 2009 IACC Full Committee Minutes
9:40 Consideration of Strategies for Updating the Strategic Plan
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
How much change to make to the current Strategic Plan?
Examples of Questions for Discussion:
* Will adding or significantly re-writing chapters be helpful or confusing to the research community? Does this vary by chapter?
* Will adding/deleting objectives each year be helpful or confusing to the research community? Does this vary by chapter?
* Should the update include progress from the portfolio analysis for each objective as an indicator of accountability? What will this mean if objectives are re-written or deleted?
9:50 IACC Discussion of Strategies for Updating the Strategic Plan
10:30 Break
10:45 Recommendations for Updating the Strategic Plan: Discussion and Votes
12:00 Lunch
1:00 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
3:00 Break
3:15 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
5:00 Closing Comments and Adjournment
Yes, this is a different topic than typical for this blog. But, let’s consider a simple and obvious lie by our president: the As is typical for this president, this project involves multiple lies. Here are but two. First, the White House would not be changed itself. Just added to. As noted in a recent […]
How does one recapture trust in the public health system? I can tell you one way to make it worse. Put Mark Baxill to work at the CDC. Mr. Blaxill is a long time anti-vaccine activist who has done a lot of harm promoting the “vaccines cause autism” lie. We on this blog have been […]
The same people who might value your efforts with Operation Warp Speed will also be able to do the simple math in their heads that says Mr. Kennedy’s approach is going to kill people. Mr. Trump, there is a lot of chatter about you wanting the Nobel Peace Prize. OK, I know you’ve publicly stated […]
We pay for the CDC. It isn’t there to support Mr. Kennedy’s agenda. It’s there to generate good information that Mr. Kennedy can use or, sadly, not use. He can’t ask them to sign off on dangerous vaccine policy and then cry “restore trust” to excuse firing the trusted experts who are, in his own […]
I will state this straight out–I believe the anti vaccine movement has put good people at risk for decades with their rhetoric. And I also believe Mr. Kennedy has contributed a great deal to this climate of hate. How much or how directly he may have influenced the gunman who opened fire at the CDC […]
Left Brain Right Brain 
Recent Comments