My problem with Donna Beegle’s story…

When a headline announces that a child has been kicked off a plane for being autistic, my first reaction is to go “WHAT?????????”  My second reaction is to back things up a bit and read every single shred of information on the matter.  A feeling of horror and mistrust creeps into me, and I wonder “will J ever be able to travel with us????  Is the world really as screwed up as that?”  The portrayal of the neuro-typical world as being populated with an endless amount of Simon Legrees is pretty overwhelming and scary.

Dr. Beegle’s account of the incident during which her fifteen year-old daughter, who is in the spectrum, was removed from a United Airlines flight that had to be diverted because of the pilot’s safety concerns can be found on Facebook.  There are, of course, several news stories regarding this issue that include video of the removal of the passengers, and accounts from other passengers.  United Airlines has stated that, after working to accommodate Dr. Beegle and her family, they decided to divert the flight because of safety concerns.

Dr. Beegle states in her account of the incident that her daughter had refused her pre-flight dinner, is a picky eater, they had snacks for her, and she’s an experienced traveler.  Noticing the signs that her daughter was going to be upset about being hungry, she asked for a chicken sandwich for her, but it wasn’t hot so she wanted a meal from First-Class, and the flight attendant said they couldn’t make an exception even though Dr. Beegle stated that her daughter is in the spectrum; Dr. Beegle then proceeded to say that perhaps they would help when her daughter started having a meltdown and scratching…  She got her hot meal, and wasn’t charged for it.

Why Dr. Beegle was surprised when the plane was diverted and she and her family were then escorted off it is beyond me.  She made, after all, a veiled threat of violence.  When a parent of a child in the spectrum says there could be a meltdown or scratching, they’re basically saying “shit is going to hit the fan, and it’s on you.”

Interestingly enough, Donna Beegle “is a highly experienced National public speaker, discussion leader, trainer,” and “has worked and written articles providing insights and strategies for communicating more effectively across race, class, gender and generational barriers for 17 years.”  Apparently, all these credentials flew out the window when it came to dealing with this situation.

Mind you, I don’t want to be catty, but…as the parents of a very autistic J I can tell you that we’ve been there and done that with the picky-eating, meltdowns, and so on and so forth.  A) You don’t announce that your child is a potentially-aggressive (either to him/herself or to others); B) you pack, pack, pack for every contingency, C) you are the one with the child in the spectrum, so YOU have to anticipate and prepare.

And then I come to my main argument: Juliette Beegle is described by her mother as having a high IQ, but has difficulties communicating.  Dr. Beegle is supposedly an expert in communication, and she failed -utterly and completely- in being her daughter’s voice in a positive and productive manner.  Instead of making arrangements with the airline prior to the flight, Dr. Beegle waited to be on the plane.  “Oh, but she didn’t have time!”  There’s always time.  Even if you have to alter your plans, step away from your dinner and walk up to the airline counter, there’s always time.  If the priority and the focus is your special needs child, you MAKE the time, and you put in the effort.

There’s one very simple thing I’ve learned from parenting J: any potentially difficult situations or discussion MUST take place where he can’t perceive them.  We are responsible for teaching J to navigate the world, and that his needs are outside the norm, but HE will have to adjust  as much as other people adjust to him.   In this day and age, an airplane full of passengers is not the place to say “when my child starts having a meltdown and starts scratching.”  It just isn’t the right way to approach the situation.  Dr. Beegle got what she wanted for her daughter, but her method was faulty.  You cannot cry wolf and then not expect the farmer to come out with a shotgun.

The worst part of this is that Dr. Beegle’s argument, when telling her story to the news, is that she says things like “If they had autism training when I explained to him when I needed something hot, we could have found a workable solution together.  But his whole view was, ‘I’m trained to give a first class meal.’ He didn’t understand at all. He was disrespectful, he was rude.”  She claims that she realized they were being asked to leave the plane “because of the fear of autism.”

Dr. Beegle doesn’t realize that she, with her behavior and attitude, has increased this fear.  Granted, people are not running down the street screaming in fear, but we now have countless incidents of individuals citing “autism” as a reason for some sort of mistreatment, discrimination, or shocking behavior on the part of a vendor or service provider.  Dr. Beegle, instead of anticipating her daughter’s needs once she didn’t eat her dinner, decided to wait to get on the plane and expect the rules to be bent to accommodate her child.

Yes, we all hope that compassion will take the day.  We all hope that a little more enlightenment and understanding is achieved in regards to our children’s special needs.  We all wish others could understand the shoes, even if they can’t quite grasp the road we tread while wearing them.  We want to help others know a little more, understand a little more, empathize a little more.  That doesn’t mean we are entitled to force knowledge, understanding and empathy on others.

I know about a child in the spectrum with communication issues.  I know about a child with behavior issues.  I remember the days when the bulk of our time was consumed with trying to help J figure out the best way to tell us something so he wouldn’t have a meltdown.  I know about the overwhelmingly depressing decision to put your up-until-then medication-free child on Risperdal.  My kid LOOKED like he wanted to (and could!) hurt people because he carried boxing gloves and wore a scrum cap.  I understand the frustration, the desire to protect and accommodate, the fear of causing a scene in public, and of being judged because of an extraordinary circumstance.  Her daughter’s IQ is higher than J’s (his diagnosis, after all, is Autism and Moderate Mental Retardation,) and I’m sure that an iPad with Proloquo2Go would be a stellar alternative for them.

I know this is probably a mean slant to take on this story, but I can’t help but think Dr. Beegle could have handled it much better than she did, and that -given her credentials- she did her daughter a disservice.  You use your strengths to help your child, and Dr. Beegle, communicator extraordinaire, failed in this purpose.  I empathize with her desire to accommodate her child and see the world doing the same thing, but this is not the way to do it.  The problem here isn’t “fear of autism.”  The problem here isn’t autism at all.  Autism was used as the reason for a potential threat to the safety of a passenger, and even if that passenger was Dr. Beegle’s daughter the pilot and crew were responsible for Ms. Beegle’s well-being.

Dr. Beegle needs to understand that she escalated the situation, and that the airline was -ultimately- looking out for her and her family, too.  She was provided the meal she requested after stating that her daughter was a potential threat to safety.  I can totally understand why the flight attendants  were concerned.  I would have been concerned, too.  As parents of individuals in the spectrum, we cannot (and should not) expect that our children’s needs will always be met in the way we want them to be met, and at the time we want them to be met.  Our main mission should be to make sure that our children have what they need to navigate the world more adeptly, more effectively, but not at the expense of other people’s rights, needs and safety.  This situation, or at least the magnitude of it, could have been prevented, or controlled.

Autism should be in the news to raise awareness, and in this particular instance the awareness that is being raised is that our children might just disrupt flights, pose threats to others…  That is not the way to do it.  We don’t need THAT kind of attention.

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