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Autism

Vaccines Don’t Cause Autism, But That’s Not the Point

By March 7, 2016 26 Comments
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 When I was studying vaccine safety communication in grad school, I didn’t really think about autism as being a part of the conversation. That correlation had been disproved so thoroughly time and time again, I thought about autism only in a statistical sense. I thought of it in terms of t-tests and chi-squares.

Yes, I had loved ones that were on the autism spectrum or had children that were to varying degrees and I appreciated the challenges they faced, but vaccines were never part of our conversation, and why would they be?  Hundreds of studies with hundreds of thousands of data points both retrospective and prospective, and the correlation had been disproven.

At times when we’re faced with a parent or a friend that has a concern about something, we try to allay their concerns instead of addressing whether those concerns were valid to begin with.  In a clinical setting providers have a short period of time to address parents’ concerns and having a larger conversation about risk and what it means to have a child with autism really means just isn’t feasible.  The conversation gets shortened to simply “vaccines don’t cause autism.”  I cringe to admit it now, but I was once part of that problem.

As Julia and I say over and over again on this site, language matters, and I didn’t realize how much my comments could have hurt some people. But as Julia and I also say, it’s OK and important to change your mind with new information. This is the story of how I came to change how I think about vaccines and autism.

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Categories: Disability + Disability Advocacy, Infectious Disease + Vaccines

Can Bleach, Turpentine or Miracle Mineral Solution Cure Childhood Ailments?

By February 16, 2016 4 Comments
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Would you ever consider swallowing bleach or turpentine? What about giving yourself an enema with bleach? To most of us this sounds horrible, but a small group of well-meaning but terribly misguided parents is choosing to feed their children these toxic substances in hopes of curing everything from the common cold to autism.

While small amounts of bleach can get your white clothes white, and turpentine can strip paint and varnish off furniture, no adult or child should ever ingest either of these substances in any form. As a pediatrician and a parent I can’t imagine ever feeding my child or a patient bleach or turpentine. I’ve struggled to understand why any loving parent would ever feed them to their children.

What’s most concerning about this trend for me is that parents are doing this because they believe bleach or turpentine will cure their children.  In addition many parents mistake the signs of significant damage (chemical burns, shedding of the intestinal lining, lethargy etc…) as signs that the bleach and turpentine are effectively ridding their child’s body of ‘toxins’. In fact it’s just the opposite.

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Categories: Accidents, Injuries, + Abuse, Disability + Disability Advocacy, Science 101 + Mythbusting

Despite Carson and Trump’s Sidestepping, No, Vaccines Don’t Cause Autism

By September 17, 2015 4 Comments
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There were major face-palms happening during one of the early GOP Debates here at The Scientific Parent’s headquarters when former presidential hopeful Dr. Ben Carson massively sidestepped a pretty simple question about vaccines and autism.

I’m not going to get into the specifics of the debate or comment on the politics, just the piece that concerns us here on our blog, which is all about science-based parenting.

When CNN’s Jake Tapper asked Dr. Carson if he thought Donald Trump should “stop saying that vaccines cause autism,” Carson avoided challenging Donald Trump’s stance directly, (which has been highly public and scientifically incorrect) and said:

ben_carson“Well let me put it this way…there have been numerous studies, and they have not demonstrated that there is any correlation between vaccinations and autism. This was something that was spread widely 15 or 20 years go and it has not been adequately… revealed to the public what is actually going on.”

-Dr. Ben Carson, GOP Debate 9/16/2015

Carson, an incredibly educated physician, went on to redirect the conversation before being interrupted by Tapper, who once again pushed him to disagree with Trump. Which Carson would not do.

While that’s in essence not a problem (challenging someone’s opinion when you would prefer not to engage in a battle), language and presence is persuasive, particularly when you’re an expert in front of tens of millions of viewers. It’s what these debates are all about. You put potential leaders in a room with cameras and you listen to how they command power, expertise, and thoughts on issues that are relevant to the public. And then viewers at home are left with new information, some correct, some not-so-correct, and to make the best judgment call they can about the candidates and the issues from what they know, and what they heard.

Carson is a former pediatric neurosurgeon who has dealt with some of the most medically fragile patients around during his tenure at Johns Hopkins Hospital. He knows the science surrounding the safety of vaccines as he touched on it in his initial response, referencing studies which you can read about in this quick crash course compiled by the CDC. He’s an expert, so one would assume that what he says is accurate.

Posed with the same question, Donald Trump, whose command of authority is essential to his business image, did not stand down from the question:

trumpface“Autism has become an epidemic. Twenty-five years ago, 35 years ago, you look at the statistics, not even close [to what it is now]…I am totally in favor of vaccines but I want smaller doses over a longer period of time.”

–  Donald Trump, GOP Debate 9/16/2015

And, after alluding to a baby being “pumped” with vaccines in the amount “meant for a horse,” he pointed to evidence of an employee of his, whose child “…went to have the vaccine and came back and a week later got a tremendous fever, got very, very sick, now is autistic.”

Trump concluded by pointing to vaccine spacing as what will reduce autism in America. Since vaccines aren’t linked to autism, and science backs that, how does spacing non-autism-causing shots reduce autism? It’s a mystery to us. But it does have an undercurrent of the conspiracy theory about pediatricians we’ve addressed before on The Scientific Parent. And I’m not even going to touch the epidemic and anti-autistic language here. That’s for another time, and another post.

Where I nearly flipped a table over is when Carson followed up to Trump’s comments by agreeing with Trump about vaccine spacing, and then reiterating his stance that vaccines don’t cause autism. The doctor said WHAT?

Though children get nearly two dozen vaccination shots by the time they are two years old (for a series of deadly, preventable diseases), there’s no general belief in the medical community that this nationally applied schedule of vaccines is a problem for healthy children. In fact, the CDC and American Academy of Pediatrics recommend the current vaccine schedule based on what is considered safe and prudent according to a wide array of factors, most important being what a child’s immune system is able to tolerate at different points in their growth and development, and what’s absolutely essential to protect them against at the earliest possible age.

Vaccines from 0-6

Example vaccine schedule from CDC, ages 0-6: http://ow.ly/SkmZM

Not convinced yet? Take a look at this document, which explains what the Advisory Committee on Immunization Practices is. It’s a panel of experts who are rigorously vetted and have a range of expertise, and they have multiple public meetings a year where they review a range of information, research, and clinical data to determine what’s safest for children. They’re the ones who provides the CDC with schedule recommendations. And I’m pretty sure they know a lot more than either Mr. Trump or Dr. Carson could dream about vaccine science and safety.

So again, challenging someone you don’t want to challenge is in essence, not a problem. What is a problem however, is for a nation that’s worked hard to eradicate so many tragic infectious diseases, to have Dr. Carson publicly representing pediatric medicine and not correcting something that is a matter of life, death, and severe disability through disease injury for millions of Americans and their children. We’ve covered that elsewhere on this blog, which you can read here, here, here, and here. We really, really hope he moves to correct this in upcoming public statements, and we’re not alone.

Misinformation of this nature spreads quickly and keeps its hold for a long time, because oftentimes it’s rooted in fear. Trump’s vaccination stance has been highly visible and what he says, if it were true, is scary to even consider. A few snapshots of his comments on Twitter, for example:

Trump Twitter 3

 

Trump Twitter 1

When you’re an expert in medicine and you allow misinformation to linger as Dr. Carson did, particularly misinformation that can be fatal if in the wrong hands, it can have massive impacts. It can lead to malpractice if you’re an actively practicing or teaching physician. And in front of a nation of attentive TV viewers, it can lead to a whooooole lot of people listening to the more bold candidate and believing that he or she is speaking the truth. It’s what terrifies the masses that leads to situations such as what happened with Tara Hills, the formerly anti-vaccination advocate mother of 7 children who ended up with whooping cough, who was misinformed and fearful by messages similar to what Trump said on stage last night.

The damage is done, though many, many websites and blogs such as our own took to the interwebs that night, as we do often, to argue in favor of science and safety.

Ask anyone who works or has worked in broadcast and we’ll tell you the same thing. People (myself included) tune out after the first few seconds of a soundbites, and they surely did given how circular political-speak can get during those debates.  Lets just hope that for a nation dependent on vaccinations for so much of its basic health protection, we can keep the facts straight from the opinions. Cast your vote where you may, but protect your kids, please, they’re our most precious candidates for this nation’s future.

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Categories: Infectious Disease + Vaccines, Policy, Politics, + Pop Health

An Autistic Flyer Gets Over Stimulated and The Flight Makes an Emergency Landing. Time for Some Education and Training!

By May 12, 2015 1 Comment
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*This article was originally published in early May 2015, though the topic of disability and public discourse about how we encounter it, and cope with it, is timeless.

 

This past week a United Airlines flight en route to Portland, Oregon made an emergency landing in Salt Lake City, Utah, to remove a family whose autistic daughter was deemed too “disruptive.” Readers, I’ve tried to look at this topic from a variety of angles, but frankly, the whole thing leaves me beyond irritated.

According to The Washington Post, during a flight to Portland, Juliette Beegle became agitated and began making repetitive noises (you can hear an example on this video at the 1:00 mark). Knowing her daughter’s behavior patterns, Donna Beegle, Juliette’s mother, knew she needed to provide her warm food to soothe her and to prevent her stressed behavior from escalating. After several requests to purchase food from First Class were turned down (the family of four was sitting in Economy/Coach), the in-flight staff finally allowed it and Juliette calmed down. After about an hour, the captain announced that the flight would be making an emergency landing due to a passenger with behavioral issues.  Once they landed, the Beegles were escorted off.

We as a society talk about children with disabilities, impairments, and severe illnesses with this sense of “otherness,” as though they’re some species of human that should be spoken about in hushed terms, the reality of their behaviors something to be overlooked or spoken about behind closed doors as if it’s shameful. It’s not.

I know adults and children with developmental disabilities, with chronic illnesses that leave them mentally impaired, and yes, sometimes with varying degrees of autism. In fact, I’m related to someone in the first category. And you know what? Sometimes these individuals get overwhelmed, and they have a meltdown, just like what happened on this flight. Just like with any kid (and some pretty average adults, even).

And those meltdowns suck.

For them, for their parents, and for others. It’s noisy, it’s upsetting, and it’s sometimes entirely disruptive. And just like with any kid over the edge, you deal with it and don’t make a bigger deal of it – it just feeds the escalation. Seriously. What happened in Salt Lake was a gross overreaction to something that should have been better handled by all sides of this story.

What makes this scenario awful from a disability advocacy perspective is the airline’s response.  I can’t imagine that an airline would emergency land a plane because a neurotypical child was making repeated noises…or as is more common with kids on planes, screaming or crying something inappropriate over and over.

So when I logged on to YouTube to watch the cell phone video of the incident, I expected to see a family being physically removed with a child yelling or whooping or something else characteristic of an autistic teen on sensory overload. Instead, I found a girl calmly walking out into the plane’s aisle, behind her family. Really?!? The whole incident smacks of disability-related discrimination, and that is something that needs to be dealt with via a formal complaint to the airline. That complaint is now apparently underway. Thank goodness. With complaints often come policy changes, and sensitivity training, which I think is essential in this case for that crew.

Reports allude to United Airlines claiming the mother’s insistence that she purchase a warm meal (available only to First Class passengers) was forced the cabin crew to break flight protocol. To a certain extent, I can see their argument here. Juliette didn’t “look autistic” (nor does anyone autistic, hello), and it was a First-Class privilege to be delegated out at the discretion of the attendants.

Also, if you’re a parent and a regular flyer, and you know that your child (autistic or not) will likely have a meltdown from either exhaustion or hunger,  you’re responsible for making sure you’ve set up precautions to handle scenarios. A lack of planning on your part does not constitute the same type of emergency on the part of United Airlines. With that said, there’s very little judgment from me to Juliette’s parents, because that entire experience must have been awful for them, but I do think what they chose to do (or not do) was entirely unworkable.

To avoid situations like this my family always notifies the airlines ahead of time that we will be flying with a child with special needs.  It’s unclear to me if the Beegle family did this.  Notifying the airline ahead of time makes the cabin crew fully aware that they have an individual on board who may not react or behave as everyone else, though they look no different. United Airlines requests as much in their extensive disability policy outline, and indicates it’s best to provide at least 24 hour advanced notice:

Every person with a disability is different, and you are the best judge of the service you require. If we’re doing more or less than you need, please communicate your preferred level of assistance to our employees … we do not require information concerning the extent of a disability, however, the more information we have about you, the better prepared we are to meet your needs.”

Typically, on most airlines, boarding passes are then coded appropriately and those extra attentions and accommodations (like a warm meal exception) can be made efficiently and without time for behavior to escalate. Again, I don’t know if the Beegles did this or not, but if this wasn’t done, it may have been a large part of the problem. I have flown United Airlines, and they’ve never made these disability exceptions an issue, so maybe the family wasn’t aware that this was an option.

With all that being said, does the punishment fit the crime?

Diverting the plane over a girl making moderate but controlled noises for a short time is not the same thing as grounding it over a belligerent passenger, or three passengers simultaneously passing out or an outright brawl between passengers. The rigidity of policy that the crew of that particular flight chose to execute, for so many reasons, is both policy ridiculous and socially inept at best. Once you know you have an agitated special needs passenger (or any passenger who is agitated) you would think that you would do your best to calm them without getting into a rigid standoff over the rules. In fact, United Airlines’ disability policy states:

in addition to requesting special assistance when making your reservation, please let our airport employees and in-flight crew members know of your special needs during your travel. Friendly reminders to our employees are always appreciated and will help us place a face with a request for assistance.” 

For a breach of protocol, it was a small one to make to calm a passenger who was clearly upset, even more so for one who needed appropriate accommodations.

 

 


 

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Categories: Ages + Stages, Disability + Disability Advocacy, Policy, Politics, + Pop Health, School-Aged Children, Tweens + Teens

Autism Speaks, But Does it Listen?

By March 23, 2015 5 Comments
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Autism Speaks has been talking for ten years now, without pausing to first listen in any meaningful way to #ActuallyAutistic people. The ongoing hoopla of #AutismSpeaks10, the online birthday party AS tried to throw itself as a prelude to its eighth annual International Autism Awareness Day, reminds me that most people — unlike me — don’t talk about autism 24/7.

Then again, my position is unusual. I am the autistic mother of an autistic son, and a special education advocate. In my world, dialogues revolve around autistic rights and responsibilities, collaborative discussions between many people including other autistics, our families, and the professionals hoping to walk with us bolstering our choices and easing our difficulties en route. Amid the flood of words, this is what I have learned:

Speaking is good. Listening is better. Deeply understanding is best of all.

It took me until my adulthood to grasp this concept. When I was a little girl, I often spoke before listening, saying stuff that got me in trouble with audiences of all ages. Conversational gems such as “I bet my vocabulary is bigger than yours,” rarely went over well. Moreover, I couldn’t fully hear responses. Not that I wasn’t listening; I was listening as hard as I could, every minute of every day, but between the auditory processing difficulties and uneven social skills inherent in my kind of autism, I found it almost impossible to grasp my conversation partners’, words much less the subtext of those words.

I almost, but not quite, sympathize with the sentiment behind #AutismSpeaks10, an orgy of self-congratulation by the most recognizable and heavily funded organization that purports to help autistics like me and my son. I get that it’s hard to hunker down and listen to people who bring a message you don’t want to hear. When I was AS’s age, I couldn’t hear such messages, and when I eventually could, it was only with the support of many neurodiverse allies. By contrast, it seems to me, that AS is purposely sticking its organizational fingers into its institutional ears. I know I’m not alone in this impression, because I’ve been participating in some of the autistic-led online counter campaigns, like #ActuallyAutistic and #HighFunctioningMeans.

I, unlike AS, do not presume to speak for every autistic’s most profound area of disagreement with the organization. There are various frustrations, all of which share the common theme that Autism Speaks needs to change its ways. AS needs to show that they are listening to us by acting upon the expertise we keep offering and they keep rejecting.

Some of us focus on legitimate protest of Autism Speaks’s unending natter about cures, because most of us don’t think of ourselves as sick. Heaven knows, I can’t hold onto a shred of self-esteem, much less engender self-confidence in my treasured son, if I relentlessly look at us through a lens of pathology. What concerns me most in my various roles, however, is not as much the names AS calls us, as where the organization’s money is going, to whom and how it could be allocated more effectively.

I’ve been listening, really listening, to Autism Speaks speaking for ten years now, and I see good reason to question their priorities. When they say they support Autism Education, I hear a pitch for Light it Up Blue, their annual public autism awareness campaign, which neither informs nor materially supports the funding of the respectful, individualized schooling my child is entitled to by law. His day-to-day services, fueled by our careful cooperation with his therapists, teachers, and school administrators is the foundation for his future independence and ability to serve a community that fully values him. Autism Speaks does not include significant support for these home and school-based services in their mission.

Other Ways to Support Autism Advocacy


Autism Society of America |
 What they do: Yearly conference features numerous autistic presenters, and there are adult Autistics integrated into their core staff and advisory panels. Why donate: consistently proven itself interested in what we Autistics identify as our own needs.

Autistic Self-Advocacy Network  What they do: Public policy advocacy, the development of Autistic cultural activities, and leadership trainings for Autistic self-advocates.Why donate: They are an autistic-led organization and largely unmatched in the amount or quality of legislative advocacy they do.

Autism Women’s Network | What they do: Work to develop more inclusive, accessible communities and opportunities for Autistic women, as well as call for the zealous prosecution of hate crimes against disabled people. Why donate: They are an autistic-led organization and support female-specific Autistic needs.

Personal-level donations to local schools vetted and approved by Autistic adults | What they do: Educate autistic students in your own community. Why donate: It supports students blossoming into self-advocates, learning to determine their futures based on their special interests.

When Autism Speaks says it supports research, I hear about their (to me, unappealing) image of far-future generations free of the neurological makeup intrinsic to what makes me who I am. I’m more interested in my son, and our present and immediate futures, rather than the almost-impossible-to predict fates of people who won’t be born for many years. I’ve heard not a whisper from AS about research targeted toward providing immediate, deliverable employment, housing or medical services to current generations of my autistic family.

I haven’t given up listening to Autism Speaks, because it doesn’t seem productive to talk back when I haven’t at least tried to understand why they say what they say, disingenuous as I often find their language. Maybe someday they’ll reciprocate and show by their financial decisions that they are finally listening to me and others who share my belief, at which point maybe I’ll even donate to them. Until then, though, they’re not getting a dime from me.  Here are a few organizations I’m more interested in supporting instead:

My own childhood underlies my decision to never tell my autistic son that he needs to listen harder. He’s already doing the best he can. He’s calmer and more observant than I’ve ever been, so I assume he picks up on more meaning than most people credit him for. I’m trying to follow his example and hope now that he’s taught me better, I can do better myself.  So I challenge AutismSpeaks to do the same. Whether autistics talk through spoken language like me, or rely on alternate forms of communication like my son, we are worth whatever effort it might require to fully understand us, and to listen to us.

 

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Categories: Disability + Disability Advocacy