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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

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

More California Advicacy Needed: take 20 seconds to protect services

22 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

Yes, this is a repeat of an article posted over the weekend. But weekends get low traffic and we need to keep this effort moving forward. And I am adding the message I sent my legislators below.

As a citizen (born here!) of California, I made a promise to disabled Californians that I would help support them. I do this with my taxes and have for years.

Now that I have a disabled child, I see that the level of support we offer has been low and recently has been diminishing.

We Californians made a promise, we need to keep it.

I am extremely disappointed with the Legislature for caving in to Governor Brown and passing a budget with not one dime to stop the deterioration of our developmental services.

Please do much, much better in the special legislative session. Give the developmental disability community the emergency 10% across-the-board funding increase we need starting NOW. Anything less won’t stop the service system from collapsing, just slow it down.

And please, don’t pass any more unfunded mandates on our community service providers. When you vote on Senate Bill 3 to raise the minimum wage and any other bills to make our providers spend more, insist that the state cover the full costs to prevent the loss of ever more of our services.

The people who take the front lines in supporting our disabled have one of the most demanding jobs in our State. I started out on the minimum wage and know the limitations of it. I’m support an increase.

Be compassionate with the minimum wage, but understand that we have to realize that this will impact our most vulnerable citizens.

Respectfully Submitted,

Matthew J. Carey

More California Advicacy Needed: take 20 seconds to protect services

21 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed 

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

The Age of Autism hits another low: excusing shaken baby syndrome

17 Jun

The Age of Autism blog has been an embarrassment to the autism communities since it was founded. They take a very vaccine antagonistic stance, promote unproven and sometimes harmful fake “therapies” and attack those whom they disagree with. In their attacks on vaccines they have until now avoided one of the most ugly claims: that shaken baby syndrome is actually vaccine injury. It’s an excuse for child abuse, a way to build a smoke screen to try to excuse someone who has harmed a child.

They have avoided this claim. Until now.

Today I was informed that they had crossed that line with an article: When is ‘Shaken Baby’ Syndrome Possibly Vaccine Injury Instead?

Besides being a new low for Dan Olmsted’s team, what does this have to do with autism? Nothing.

If you want to read about the shaken baby syndrome as vaccine injury lie, here’s

Science Based Medicine: The antivaccine lie that just won’t die: The claim that shaken baby syndrome is really due to “vaccine injury”

The National Center on Shaken Baby Syndrome: The Role of Irresponsible Medical Expert Testimony in Creating a False Causal Connection

I long ago gave up on the so-called “editors” at the Age of Autism for demonstrating any ability to keep absolute nonsense off their blog. They lack leadership, they lack courage, they lack integrity.

They are an embarrassment to our communities. The autism communities stand apart from the ugly lie that shaken baby syndrome is vaccine injury.

By Matt Carey

San Jose (and across the State) Keep the Promise Rally

16 Jun

Just got this letter and am posting it here: Rallies are being held to advocate to protect the budget for disability services in California.  This letter focuses on the San Jose Rally, but also gives links for rallies across the state.

We need to do what we can to preserve services here in our state.  Now is the time to act–call, fax, attend a rally.

KEEP THE PROMISE RALLY

 

Friday, June 19

12:15 pm to 1:00 pm

San Jose City Hall Plaza

200 E. Santa Clara St.

 

Join Senator Jim Beall for an important rally with consumers and advocates from the developmental disabilities community to urge Governor Brown to approve the Legislature’s modest budget increase and reform proposal for the developmental disabilities services programs.

 

Programs are in crisis and closing at record numbers. The gains obtained in the Legislature’s budget cannot be lost.  We must keep lobbying because 280,000 people are counting on us.

And as you lobby the Governor and Leadership remember: Your stories matter and your advocacy has an impact.  Join us Friday and share your story directly with the Governor by following the instructions below.

 

Leave your message via these options:

Phone: 916-445-2841 // Fax: 916-558-3160

 

https://www.facebook.com/jerrybrown

https://clicktotweet.com/em7dn

https://govnews.ca.gov/gov39mail/mail.php

Advocates across the state have organized a statewide campaign to tell Governor Brown to support the budget and reform proposals for developmental services! Learn more about how you can participate and get involved.

 

Keep The Promise Rallies will be taking place at the following locations:

 

New! San Jose

www.tinyurl.com/06-LC-SJ

 Sacramento

www.tinyurl.com/LC-06-sac

 Oakland

www.tinyurl.com/LC-06-oak

New! San Francisco

www.tinyurl.com/06-LC-SF

New! Los Angeles (2 rallies)

www.tinyurl.com/06-LC-LA

San Diego

www.tinyurl.com/LC-06-SD

Online Vigil

http://thearcca.org/38.html

 

 

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