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.
Not only was the locale a mere 20 minutes from my home, but I knew that address to be the approximate location of the Inland Regional Center, an organization dedicated to supporting children and adults with developmental disabilities.
Why would I know that?
Because my sister has developmental disabilities. She’s also a member of and participant in IRC.
*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.
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.
AutisticSelf-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.