I have a little secret to share with you.
Come here.
A little closer.
Okay, you ready?

There are people with autism among you. In fact, you may be standing next to a person with autism RIGHT NOW.

I’ve included a visual aide to assist you in the identification of someone with autism. Pay close attention so you know what to look for:

First, notice the eyebrows. See how they’re made of hair? Yeah. That. Also, there seems to be two eyes and a nose. That’s a major characteristic of people with autism. Finally, people with autism may smile. Or wear a baseball hat. Sometimes, they may do both things at once; that’s usually a dead giveaway that you’re in the presence of someone with this disorder.

Shhhhhhhhhhhh! Stop looking around, you’re making it obvious. Look at me.

Now, whatever you do, don’t make a sound. Don’t move a muscle. You don’t want to let on that you suspect a thing because everyone knows that people with autism are……………. ALSO PEOPLE.

I know. Shocking, isn’t it?

What’s even more shocking is that they’re everywhere. They go to the same grocery stores you do. They frequent the same parks and beaches. They attend the same worship services (not that it counts, because Jesus is too busy blessing you and your perfect family to care about some shmuck with autism flapping in the back pew).

Get this: they’re even allowed to go to school with your kids (I know, right?!) Your child may have even played on the same school playground equipment as someone with autism. Probably not at the same time though, because that would be too inclusive, so your offspring should be safe. But just in case, you may want to panic and call your local school district and demand “those people” be removed from the property immediately. Preferably with a police escort and an ambulance or two standing by.

I mean, United Airlines is doing it and it seems to be working, so why not give it a try? Seems that all you have to do to get rid of someone with autism, is just ask.

As you ponder excitedly who you’ll call first (Your pediatrician’s office? Maybe the local community swimming pool? Your daughter’s girl scout troop or the boy scouts? Oh God, what if someone in the troop is gay AND has autism? *Head explodes*) let me fill you in on something: Autism is not going away. It’s not a fad, it’s not bad parenting, and it’s not a life of glorious never-ending entitlements. It’s a neurological disorder you dummy, and it’s coming to a loved one near YOU. This is not a threat, nor is it a scare tactic. It’s just the truth. Autism is everywhere and as long as you’re everywhere too, you’re going to come across it, and, despite what you may think, probably live to tell about it.

Here’s the thing: autism families like mine, who have been elbow deep in discriminatory bullshit for the better part of the last decade, are pretty much over judgmental pricks like you. This is our society too; our community. These are our churches and synagogues. These are our hospitals and our stores. These are our schools and our parks. We belong here and we’re not going to let some ignorant a-holes tell us otherwise.

And here’s a thought: if we make you uncomfortable, maybe it’s your turn to feel unwelcome and discriminated against. Maybe it’s your turn to stay home, day after day, wondering how you’ll ever be able to take that family trip, or attend a loved ones celebration. Maybe it’s your turn to leave dinner half-way through because the stares from others are penetrating through your skull. Maybe it’s your turn to be denied the simple right to access society without being told you don’t belong. Yes. I think I like that idea. I say let’s run with it.

You know what the worst part of your ignorance and hatred is? Big jerks like you raising another generation of jerks, who will inherit the earth and look at my son with special needs as “less than.” I break out in hives every time I think about it. Perfectly wonderful children who would be better off being raised by a cardboard box are being poisoned by your ugly interpretation of the world. Where’s CPS when you need them? Oh, that’s right. They’re harassing your next door neighbors because their son has autism and you felt the need to report the family for what you deem to be terrible parenting.

I can’t fix you. It’s not that I’ve given up and that I won’t continue to try and minimize the assholery my son and others like him have to face on a daily basis. I will never stop advocating. But I can’t fix stupid, so instead of wasting my time on you, I’m just going to keep bringing my child with autism….everywhere. You know, exactly where he belongs. Those who are salvageable will get onboard and realize the universe is big enough for all us. I know it seems hard to believe, but so is our local Trader Joe’s.

So move over, or get out of the way.

Oh, and one more thing.

May you or someone you love never need a single accommodation or the compassionate understanding of a stranger.

Because there’s nothing worse than having to tell someone who’s already being crushed by the unforgiving weight of isolation and discrimination

“I told you so.”

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6 Replies to “Breaking News! People With Autism Are Among You!”

  1. The 15 yo girl with autism didn’t get kicked off the United Airlines flight for being autistic — the plane had to be emergency-landed because her (non-autistic, highly educated) mother threatened airline staff.

    “Give me sitting-in-coach-on-a-coach ticket a first class hot meal (that I will pay for) or she’s might just hit/scratch somebody”, said mom.

    Mom is a doctor, who we can safely assume has a vocabulary large and comprehensive enough to request accommodations for her child with special needs in a manner that does not implicitly (or explicitly) threaten violence.

    Dr. Beedle (aka mom) notes that she’s flown 22+ times with her daughter, in coach, without incident — so she’s surely aware that 1. Hot food isn’t availability on all flights, 2. Folks in coach cannot purchase first-class hot meals on flights, as a matter of airline policy and 3. packing snacks is a good idea, particularly if you know your autistic child to be a very “picky” eater. Thermoses and liquids aren’t allowed on most flights, but folks have the option of buying food inside the terminal (to feed the kid when she gets hungry) or bringing pre-packaged food from home that can be heated in flight, eg cup of soup, easy mac, etc. (to ensure the kid who refuses to eat room temperature food won’t starve).

    It’s also helpful to keep in mind that:
    – 1 in 68 (ish) kids have autism
    – there are 100k domestic flights per DAY the U.S.
    – there are only 300 passenger-caused emergency landings per YEAR on domestic flights in the U.S.
    – caring for an autistic kid is really expensive, heck, any kid (even NT ones!) is really expensive and most families fly coach.

    As such, the sheer prevalence of autism among US kids suggests that autistic kids fly all the time, with their parents, who request accommodations in a manner that isn’t and is not PERCEIVED as a threat of physical harm that results in an emergency landing.

    In this particular, specific case, United Airlines was right — and the mom of the autistic 15 yo was BEYOND out of line.

  2. The mom was not threatening the crew member. She was stating a fact: individuals with autism who have limited verbal skills and/or sensory issues may resort to behaviors in order to communicate their frustration. This wasn’t a bomb threat. This was a mom appealing to the compassion of a flight attendant (who apparently had none). The mom was being proactive and thoughtful of fellow passengers. Damned if you do, damned if you don’t. I love that the other passengers stood up for this family and went on record to report that no one was hurt or threatened by this child or her parents. Comparing this incident to a few flights is meaningless to families that face discrimination on a daily basis. Daily. Sometimes, more than once. Your statistics do nothing to assuage the very real stress and pain these families feel due to the ignorance of others. I have flown on dozens of transatlantic flights and witnessed children in various states of unrest; meltdowns, tantrums, screaming, you name it. Not once was our flight diverted. Not once did the captain make an emergency landing. This WAS discrimination, by a flight crew that clearly errs on the side of unnecessary drama. It’s gross. And it’s everywhere. So keep your statistics (ish) to yourself. They do not represent what our families face each day.

  3. What you consider a statement of fact, United Airlines considered a threat. A nearly adult-sized 15 year old has the potential to “communicate” frustration in a manner that results in a physical injury to another passenger on the plane.

    Flights don’t get diverted because a child or adult (disabled or not) has a meltdown. Flights get diverted when a passenger says “abide by my (unreasonable) request or my kid might just hit/scratch somebody”. The fact that the passengers “stood up” for this family is irrelevant — it happened AFTER the airline did Dr. Beedle’s bidding.

    At what point does the right of an individual with communication difficulties right to express themselves in whatever manner they please in a teeny-tiny metal tube 35,000 feet up in the air bump up against the (reasonable) expectations of other passengers to not be physically assaulted?

    Traveling with kids, heck, traveling without kids, can be stressful and exhausting The “stress and pain” that this particular family endured was self-induced. Threatening airline staff is not the sort of thing that goes over well in the post-9/11 era — that ain’t exactly news.

    My nephew’s on the spectrum, as is my daughter’s BFF (a non-verbal girl with an iPad “talker”). Both kids have families that love them enough to teach them to communicate… the kids are SO much happier and less frustrated as a result! you can *ask* them and they’ll tell you themselves! BFF’s newfound ability to say “no! Itchy shirt!” and “no! Broken cookie!!” (she is nearly six) has improved the quality of her life dramatically. She’s SIX and I’ve personally witnessed her NOT melting down when a preferred food wasn’t available while the car was stuck in traffic. The Beedles have spent FIFTEEN YEARS not bothering to teach their kid this basic skill.

    It’s heRtbreaking… especially as the KID is the one who has primarily pats the price for it. Doesn’t the 15 yo DESERVE coping skills? Wouldn’t this child’s life — any autistic child’s life!! — be BETTER if they could make their needs known (versus melting down)?!??

  4. I am stunned that you presume that the Beedle family hasn’t been working with their daughter on communication skills. Autism is a form of developmental delay. DELAY being the key word. It can take years of work before a skill is acquired. Even then, under certain circumstances (hunger, for example) those coping skills are drastically reduced.

  5. To paraphrase Winston Churchill, doing your best is nowhere near enough if you can’t be bothered to do what’s *required*.

    Whatever this family did doesn’t seem to have worked. Why not try a different way? Or 18 different ways? Until something worked?!??

  6. There is clearly no way to explain it to you to get you to understand. My son had major elopement problems for his 4th and 5th year of life. We did EVERYTHING possible to prevent- we bought the locks of all types, we pushed the couch in front of the front door, we had a system for watching him 100% of the time and we hired help, we ran so many protocols with stop signs and tried to teach him, we MOVED to a different neighborhood… and STILL he would escape. Even people within the autism community would say to us “we just taught our child xyz and he learned….” Oh really! It’s not the same for every child. My child, at 10, can now speak and communicate. He doesn’t have a lot of requirements for food like this girl does. He is super super unlikely to have a meltdown on an airplane. He is actually pretty good in public, he wasn’t always this way. The way we overcame those challenges was with a lot of practice (i.e. we needed to take him in public when it wasn’t so pretty). And you know what else? A lot of luck! I have known enough children and adults with autism to know that no one is immune to this type of problem on an airplane. You can make all the preparations in the world, you can plan for all the contingencies, you can teach and teach and teach for over a decade but all it takes is one little detail to send a child with a DISABILITY (one that is defined by this girl’s rigid behavior) into a panic attack for which she has no control over. And certainly her mom has no control over. Her mom’s request WAS reasonable- could she please purchase a hot meal to help accommodate her disabled child. The answer was no. The mom, on edge from what she knew was about to occur, INFORMED the flight attendant of what would happen. Could she have chosen better words? Maybe. But she did not threaten- she didn’t say the plane is going down or her daughter would go totally wild and open the door. I have seen grown men (whose only ‘disability” was being three sheets to the wind) be total a-holes to flight attendants and be yell-y and menancing and just awful. No carting them off the plane during an emergency landing. What if the child had diabetes and mom had requested the juice that they only had in first class? Please give my child the juice or else she will have a diabetic seizure. Threatening? Would they have given her the juice? Or would people be criticizing this mom for forgetting the juice or not controlling her child’s blood sugar (which actually would be far easier to do than to control an anxiety attack meltdown from a person with mental illness).
    You write as if you know this family. You know they haven’t worked with their child to teach her to communicate? You know two people with autism and so you understand that these parents have not done their job. Give me a break. I know hundreds of people with autism. My son is not high functioning and yet he’s pretty good in public. I cannot fathom judging those whose kids have a lot of difficulties in public. I haven’t done anything different or better. I am not a better autism mom because my child is NOW relatively good in public. There but for the grace of God go I. I used to be a super judge-y person and having a child with severe autism has wiped that out. This mom was in a very stressful situation with her disabled child. Instead of being kind and compassionate and helpful (and it would have been so easy!) the flight crew decided to be jerks. Jo’s point is that we are here, we are growing, and we will not be hiding in our homes.

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