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Autistic kids are more likely to be hospitalized–and that includes for vaccine preventable diseases

15 Jul

There’s a lot of talk about comorbid conditions and autism. Sadly that conversation is often used to suggest that vaccines cause autism. As in, “look at how much GI disease there is in autism. Must be caused by vaccines!”

And because of that discussion, probably most of the people drawn to read this article will be because I highlighted vaccines in the title. So let’s get that out of the way first. A group of researchers looked at what leads to hospitalization of autistic kids. In specific, they looked at “Ambulatory care sensitive conditions” which are defined as: (ACSCs) are conditions for which appropriate outpatient care prevents or reduces the need for hospitalization. The study was presented at IMFAR and is titled Ambulatory Care Sensitive Hospitalizations Among Children with Autism Spectrum Disorder

What did they find for vaccine preventable diseases? Autistic kids are 3 times more likely to be hospitalized for vaccine preventable diseases than are kids with no chronic conditions.

Hospitalized.

Three times more often.

For diseases that can be easily prevented with vaccines.

But sadly some of the most vocal opponents to vaccines are autism parents. All due to the misinformation that claims that autism is caused by vaccines. And the result is that autistic kids suffer from preventable diseases.

Not only do these parents contribute to the misinformation campaign against vaccines, they also ignore the fact that other conditions are even more common among autistics than, say, GI disease. Not to downplay GI disease. Not at all. From this study, hospitalization from constipation occurred in 1.2% of autistic kids. That’s over 4 times higher than for kids without chronic conditions and that’s a big deal. But what fraction of autistic kids hospitalized for mental health conditions? 23.5%. That’s over 8 times more often than kids without chronic conditions. And nearly 10 times more common than hospitalization from constipation and gastroenteritis combined.

14.5% of autistic kids were hospitalized for epilepsy. Nearly 10 times the value for the general population.

But as a community, autism parents are not talking about mental health conditions and epilepsy much. The most vocal among us have let themselves focus on the (now dead) vaccine debate. And it is hurting us as a community. It is hurting the people we are supposedly working to serve: autistics.

To bring this back from a critique of the harm that vocal minority of the parents cause–

Yes, autistics are more likely to be hospitalized than are the general population. And big issues for us include mental health and epilepsy.

Hospitalization–any hospitalization–is a big deal. Especially in the autistic population. Not too long ago we saw that autistics were more likely to be restrained in the ER. I remember being left overnight in the hospital when I was a kid. No way I could do that with my autistic kid, and I don’t see being left alone as a viable option for many of the autistics (both kids and adults) I know. How do we support autistics (and other disabled people) when hospitalized? From my experiences, I can say “not well”.

And that’s something I hope we can change. I hope enough people read past the vaccine part of this article and take the time to really think about where we are applying our advocacy in the autism communities.

Here’s the table from a paper
Paper_18942_abstract_10437_0

Ambulatory Care Sensitive Hospitalizations Among Children with Autism Spectrum Disorder

P. S. Carbone1, P. Young1, G. Stoddard1, J. Wilkes1 and L. Trasande2, (1)University of Utah, Salt Lake City, UT, (2)NYU School of Medicine, New York, NY

Background: “Ambulatory care sensitive conditions” (ACSCs) are conditions for which appropriate outpatient care prevents or reduces the need for hospitalization. Children with autism spectrum disorder (ASD) may be at risk for hospitalization for ACSCs because of difficulty accessing high quality primary care.
Objectives: The purpose of this study is to describe the prevalence and health care utilization of children with ASD who are hospitalized for ACSCs and compare them with the prevalence and health care utilization for the same conditions in hospitalized children without ASD.

Methods: Using the 2009 Kids Inpatient Database, hospitalizations for an ACSC were examined within three cohorts of children aged 3-20 years: children with ASD, children with chronic conditions without ASD (CC), and children with no chronic conditions (no-CC). In order to compare the prevalence of each ACSC for the three cohorts we separately analyzed discharges with a primary diagnosis ICD-9-CM code that corresponded to each of ACSCs listed in the table. In order to compare inpatient health care utilization for the three cohorts we analyzed total charges (TC) and length of stay (LOS), for each ACSC.

Results: Within the 24,174 in the ASD cohort, we found that the proportion of hospitalizations for an ACSC was 55.9%, compared with 28.2% in the CC cohort and 22.9% in the no-CC cohort (p<0.001). The most prevalent ACSCs among children with ASD were mental health conditions (e.g. anxiety, depression, mood disorder) (23.5%) and epilepsy (14.7%). Children with ASD were more likely to be hospitalized for a mental health condition, epilepsy, constipation, dehydration, underweight and a dental condition compared with the other cohorts (Table). After adjusting for covariates (age, gender, race, median household income, primary payor, hospital variables [size, location region, teaching status, type] and point of origin of admission), we found that children with ASD were nearly ten times more likely to be hospitalized for a mental health condition (OR: 9.72; 95% CI: 8.39-11.26; p <0.001), nearly seven times more likely to be hospitalized for epilepsy (OR: 6.58; 95% CI: 5.95-7.29; p <0.001) and more likely to be hospitalized for constipation, pneumonia, dehydration, vaccine preventable diseases, underweight and nutritional deficiencies, compared with the no-CC cohort. Adjusting for the same covariates we found that children with ASD were twice as likely to be hospitalized for mental health conditions (OR: 2.19; 95% CI: 1.99-2.41; p <0.001), five times more likely to be hospitalized for epilepsy (OR: 4.99; 95% CI: 4.60-5.41; p <0.001), and were significantly more likely to be hospitalized for constipation, dehydration, and underweight compared with the CC cohort. The ASD cohort had higher TC and longer LOS for mental health conditions compared with the other two cohorts.

Conclusions: Outpatient efforts to prevent hospitalizations in children with ASD should focus on mental health care needs and seizure management. Other strategies should include actively managing constipation and dehydration, monitoring nutritional status, and immunizing against vaccine preventable conditions. Understanding the reasons for the higher healthcare utilization among children with ASD hospitalized for mental health conditions should be the subject of further research.


By Matt Carey

Jim Carrey, you are part of the problem for us in the Autism Community

15 Jul

Years back Jim Carrey was and autism were mentioned together regularly in the news.  This was at the height of the vaccine misinformation campaign of his then partner, Jenny McCarthy.  Mr. Carrey went so far as to be a speaker at the “Green Our Vaccines” rally in Washington.  That was 2008. Since then the Green Our Vaccines as a movement has died, Jenny McCarthy has tried to distance herself from her very vocal stance on vaccines, and given that Mr. Carrey and Ms. McCarthy split, it seemed like we had seen the last of Mr. Carrey.

Until recently.

You see Mr. Carrey took offense to new legislation in California.  A bill that will roll back vaccine exemptions to where personal belief exemptions will no longer be accepted in the schools here.  In other words, for the most part one will now need an actual medical reason to avoid vaccination in order to register for public school.

Mr. Carrey took to twitter with his complaints about the new law.  All well and good, free speech and all.  But Mr. Carrey went too far. He decided to take pictures of kids in distress and the implication that this is what happens when you vaccinate your kids. One tweet read ““A trillion dollars buys a lot of expert opinions. Will it buy you? TOXIN FREE VACCINES, A REASONABLE REQUEST!”” and included a picture of an autistic kid (the other pictures he used appear to have been stock images). The story is discussed by Emily Willingham as Jim Carrey Unwittingly Brings Attention To Something Actually Linked To Autism

And Time Magazine in Jim Carrey Apologizes for Using Photo of Autistic Boy in Anti-Vaccination Tweet.

Because, to give him credit, Mr. Carrey did apologize to that family. (Ironically, it turns out that the kid was unvaccinated when he was first diagnosed autistic).

I harken back to Mr. Carrey’s time with the autism community (remember when Generation Rescue was tagged as “Jenny McCarthy and Jim Carrey’s Autism Organization”?). At one speech, probably the Green Our Vaccines Rally, Mr. Carrey made the pseduo-profound statement, “We are not the problem. The problem is the problem.”

So while I do appreciate Mr. Carrey stepping up and apologizing to one family, I do want to point out: Mr. Carrey, you were one of the problems for the autism community. And you apparently still are.

Ms. McCarthy introduced you to a closed group of people, a small sampling of the autism community. You likely came away thinking that they *are* the autism community, because that’s how they think of themselves.

They aren’t.

Most of us autism parents don’t subscribe to the vaccine causation idea. I can provide the links to multiple studies if you like, but it’s just the way things are.

And autism parents are not the autism community. One thing that Generation Rescue and like organizations have done is act like autistics are some sort of second class citizens in the community. Who do you think the community primarily is, autistics or parents?

Here’s the thing: the vaccine-causation idea is probably the most damaging notion to have hit the autism community. Did you hear about the “refrigerator mother” theory during your time at Generation Rescue? It’s second to the vaccine causation theory. Telling generations of disabled kids that they are less than they are, that they should be someone else, is damaging. Mr. Carrey, did you attend any of those parent conventions, like AutismOne? Perhaps you look at alternative medicine favorably. Well, the vaccine causation idea is used to sell “therapies” that aren’t close to being “alternative”. They are just wrong. And, frankly, abusive. Chemical castration of disabled children? This was promoted multiple times at conventions where your former partner was a keynote speaker. Fake diagnoses of mercury poisoning, followed by chelation? Same. And even a major promoter of chelation has a new study showing it doesn’t work. Did anyone tell you why the NIH autism/chelation trial was stopped? Because if you chelate test animals who do not have mercury intoxication, they go down cognitively. If the same happens in humans, tens of thousands of autistic children lost some IQ due to chelation. Think that one over, since GR started out as primarily an org promoting chelation. Daily bleach drinks and bleach enemas? That one is probably new since you dropped out. But, yep, that gets sold as a cure for “vaccine injury”. Shall I go on? Because I can. The autism=vaccine injury idea sells junk medicine which is subjected upon disabled children.

And you added your voice to the vaccine-causation idea.

You’ve apologized to one family. That took guts. Now step up and start making amends to the rest of us. Parents and, especially, autistics.


By Matt Carey

California Senate Bill introduced to increase disability services funding

2 Jul

I just got an email forwarded to me from Senator Beall’s office.  The Senator has introduced a bill to increase funding levels for the regional center system.   Be ready to advocate for passage of this bill.

 

Here’s the email:

Today, Senator Beall introduced SB X 2-1 in response to the developmental community service system crisis. He is joined by Senators Pavley and Monning who are principal coauthors.

 

Specifically, SB X2  1 mandates:

 

  • Provides a 10% increase in the funding paid to a regional center and purchase-of-service vendors;

  • Requires funding to enable the regional center and the regional center’s purchase-of-service vendors to fund certain costs related to minimum wage requirements; and

  • Requires the Department of Developmental Services to develop a 10-year financial sustainability plan.

Action Alert: You guessed it, we need more emails to save our services

1 Jul
By now I hope most readers here are aware that there’s a fight ongoing in California to restore funding levels for developmental disability services.   We asked for a 10% increase, got a 5% increase and that was cut in a budget deal with the Governor.  But the budget isn’t finalized yet.  And there’s still a chance to get some restoration of funding levels into this budget.
It takes very little time to send an email using the link.  And not much more to send more emails using the other links.  Please take the time to do this, and take the time now.    There’s an “extraordinary session hearing” tomorrow morning at 10am.  A bunch of emails to legislators could make the difference in this last minute effort.
If there was one time to act, that time is now.
Here’s the letter.
Dear Friends,
We aren’t doing very well generating emails to legislators this time around to save our developmental services.
I’m not sure why. Too many glitches? I get that and I apologize. Discouragement? More about that in three paragraphs, but first here’s what I’m imploring you to do now. It will take about 40 seconds and it will make a difference.
And second, if you’re in LA County, please click a second time email the 10 legislators there who we think have the most power to decide whether our community gets the funding increase we need to stabilize our service system. (After I set up the system to try to make it easy to email the 10, I found that two of them now only accept emails from outside their districts if they come through their web sites, so the ones you send them will bounce back. If you’re willing to spend another minute on this… Click here to email Senator de LeonClick here to email Assembly Member Gomez. If you want to send them the same message you sent the other eight, you can cut and paste it into their web site forms.)
Now for the analysis/opinion.
 
It’s hard for me to know whether to feel encouraged or discouraged about the continuing battle to stop our community services system from disintegrating. The two things I know for sure are that we’re in a different kind of situation now than ever before, and that we have no choice but to go on fighting.
On one hand, last week Governor Brown signed a budget that contains no funding relief for regional centers and provider rates and continues the community system down the path to system collapse. The Legislature accepted the governor’s consistently, unrealistically low revenue estimates, leaving little money for anything new. They gave in, evidently, because they know he has a line-item veto and can simply take out any money they put in beyond his revenue estimates. They gave no evident consideration to a veto override, as earlier Legislatures tried and sometimes succeeded in doing the last time Jerry Brown was governor. And after they accepted his low revenue estimates last month, they didn’t prioritize us high enough to get any of what little new money Governor Brown admits exists; or at least that’s what the governor said at his press conference with the legislative leaders.
Sounds bad, doesn’t it?
On the other hand, the legislature and governor put us into the special legislative session along with high-priority, big-ticket items like road repair and MediCal provider rates, while they left a lot of other services on the cutting room floor. There’s not a chance in the world we’d be in the special session were it not for our community’s first-ever united lobbying in the Capitol, our low-budget but effective media work statewide, and the unrelenting grassroots campaign of meetings, calls, rallies, tweets, Facebook postings, petitions, and emails. We’ve got more genuine sympathy in the Legislature — and more political power — than I’ve ever seen. That’s been reflected again in the last two weeks by public statements from the legislative leaders and very strong speeches on the Senate floor by both Democratic and Republican legislators. And the Democrats have a plan that just might work to convince the enough Republicans to vote for targeted revenue increases to cover the costs.
So that sounds good, doesn’t it?
There’s no way to tell how the fight will turn out, or whether it will go on a few weeks or many months. So all I can suggest is let your anger over being left out of the budget get you motivated, and let your hope for an ultimate win keep you motivated. What else can we do?
Thank your advocacy.
Greg
PS. And as I usually ask, after you send the emails, please forward this Action Alert far and wide. We’ve got more political power than ever, but we need to demonstrate more.
 
Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814

Protesting Kerri Rivera and Chlorine Dioxide Abuse

26 Jun Featured Image -- 14361

Sullivan (Matt Carey):

You always hear from groups promoting false cures “listen to the parents”. Well parents, like me, see MMS (Miracle Mineral Solution) aka CD (Chlorine Dioxide) as abusive. There is no evidence that it works. There is no good explanation for why it should work as a therapy. And there is the chance of adverse reactions.

No benefit and a risk. Risk/reward ratio is 0.

Originally posted on The Skeptical Beard:

Guest Post by Alison Bernstein of Mommy, PhD

This past Saturday, a small group gathered outside the Loews Chicago O’Hare Hotel to protest the presentation by Kerri Rivera at the AutismOne conference. Kerri Rivera promotes the use of chlorine dioxide, or CD, an industrial bleaching agent, for bleach enemas to “cure” children with autism. Here, I am sharing stories from three of the protesters. (If you haven’t read about this issue before, please see the end of the article to learn about CD, Kerri Rivera and why we were protesting her presentation at AutismOne.)


Rebecca F is a mom to two boys, one with autism. She joined to promote awareness and respect for her son and all those with autism. She wanted the opportunity to talk directly to parents because so many people try to exploit special needs parents, both financially and emotionally.

Kim Z is a mom who participated…

View original 2,360 more words

Illinois to Kerri Rivera: Show that MMS works or stop making claims.

26 Jun

MMS is a scam, plain and simple. And it has been very frustrating to watch as people make grandiose claims with no one making them actually back those claims up.

Which is why I appreciate that the State of Illinois basically asked Kerri Rivera “Put up or Shut Up”. And she chose the latter. At least in Illinois.

NBC Chicago has an article up: State Takes Action Against “Miracle Treatment” For Children

In that article they quote the Illinois Attorney General:

“I’m very thankful that NBC 5 actually brought this to our attention,” said Illinois Attorney General Lisa Madigan. “Because clearly, you have a situation where there are people, complete quacks, that are out there promoting a very dangerous chemical being given to young children.”

And, further:

Madigan’s office dispatched investigators to a Rivera appearance at a suburban Chicago hotel in late May. After her seminar, they served her with a subpoena, demanding that she substantiate the claims she had made of her protocol’s effectiveness in treating autistic children.

Madigan’s office said Rivera entered into what is known as an assurance of voluntary compliance, where she agrees not to conduct future seminars in Illinois.

Substantiate the claims: put up.

Agree not to conduct future seminars: shut up.

Here’s the agreement.

This autism parent thanks the State of Illinois for stepping up and taking action. MMS is a scam and it is about time people started taking action to stop the overblown claims.


By Matt Carey

TED Talk: Steve Silberman: The forgotten history of autism

22 Jun

Steve Silberman has been researching the history of autism for 5 years.  I met him at the start of this journey, at IMFAR in San Diego and even then he had a good grasp of autism.  Since then he has unearthed a great deal and I am eagerly awaiting his book (which I have already pre-ordered).

Recently, Mr. Silberman gave a TED talk: The forgotten history of autism.  And it is now online.

By Matt Carey

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