Sharing about the autism diagnosis for my family was scary for me. I clearly had nothing to fear; I am completely blown away by the HUGE outpouring of support you all gave my family and myself! It’s going to take me days (maybe weeks!) to investigate all the books, websites, groups, and other resources you sent in response to my call for help.
I can’t possibly thank you all enough.
Unfortunately, while my “tribe” has proven unwavering support and encouragement, I have already experienced the “autism stigma” firsthand.
Our doctors appointment was a week ago Wednesday. I left for work the next day and flew through the weekend. On Saturday, a mere 4 days post-diagnosis, I had an unfortunate encounter with a co-worker.
Things went smoothly enough throughout the flight. I found a passenger who was very nice and struck up a conversation. She soon revealed that her 2 year old son has autism. Naturally, I shared our recent diagnosis and we engaged in a thrilling conversation about raising children with autism. It was SO nice to talk to someone who is also newly diagnosed!
When we were landing, I took my assigned jumpseat and joked with my coworker. “This flight needs to be about 4 hours longer so I’d have enough time to talk to that awesome lady!” I said.
She laughed. “What were you talking about?”
“Well, her son has autism, and my son and I were just diagnosed last week.”
“Really?” she looked at me intently. “I’d never have guessed.”
She looked surprised. I shrugged. “I know it doesn’t seem like I have autism, but believe me, there are a lot of things I struggle with, especially as a kid. I’ve learned a lot about functioning as I’ve grown. The best part is that now I can help my son, though.” (Yes, I know I wasn’t technically diagnosed, but I was trying to keep it simple for conversational flow.)
I thought it was a nice little “awareness raising moment”.
We landed and got to the gate. A passenger raced to the front to deplane first. While standing there, waiting for the gate agent to open the door, my crew member started chatting with him. Their conversation was a tad confusing to me; it was almost like they knew each other, but then it was clear they didn’t. Then I thought he was another airline employee in plain clothes, until he said some things that didn’t jive with that theory.
Finally, my curiosity couldn’t take it any more. I asked him what he did for a living.
He just looked at me with big eyes and an incredulous look on his face…and suddenly I realized: we had Federal Air Marshall’s on our flight! I hadn’t forgotten, but I hadn’t recognized him at that moment. (In case you don’t know, they travel incognito and we are NOT to “break their cover” unless absolutely necessary.)
“Ohmigosh! I’m sorry! You aren’t sitting in your seat any more so I didn’t recognize you! People look different standing up.” I laughed. “What can I say; I’m slow, but I get there eventually!”
We all laughed. He put his hand on my shoulder and joked with me. “That’s okay, the world needs slow people, too.”
It was good, harmless joking and fun; poking fun at myself for having a slip of memory and coming across as a goof. We were all relaxed and laughing, until my fellow crew member said, “You’re right. We were actually just talking about her being slow.”
Okay, there wasn’t actually a screech. The conversation didn’t actually stop. The two of them continued to chuckle and chat. For me, however, there may as well have been an actual record-screech sound as my mind and body seemed to come to a total stop.
She said…what? No…she couldn’t have! Maybe she was referring to how tired I’ve been lately? But no, I didn’t tell her that I haven’t been sleeping well lately and feel tired. She did say that! She was that audacious!
She called me “slow” because I told her I have autism.
When the Air Marshall and I said what we said, we were referring to me being “slow to catch on”. That’s not anything inherently bad or derogatory.
There are several innocuous reasons a normally quick person might be “slow to catch on” to something. Maybe they’re tired and not thinking clearly. Maybe they’re stressed out and their brain is shooting in a zillion directions at once. Maybe they’ve got kids yelling at them while trying to cook dinner and schedule a doctors appointment on the phone and they can’t process one.more.thing. right then.
What my crew member said, though, was saying that what we were talking about earlier – autism – was the reason I was slow. The only way to interpret that is that this person thinks being autistic means being “slow”.
Now, if someone says a person is slow because they’re tired, that’s not really an insult; it’s probably a statement of fact. The assumption is that the person is normally “quick” when they are not tired.
But to say someone is slow because of a permanent condition is to imply that their mental faculties are not as high on a day-to-day basis. Saying someone’s mental faculties are not very high on a day-to-day basis is simply a ‘polite’ way of saying someone is, well, stupid.
She thinks being autistic equates to being stupid.
And she flat out said it straight to my face.
Worse, she essentially said “Yep. You’re stupid. Your son is stupid. And the son of our passenger? He’s stupid as well. In fact, ALL autistic people are stupid.”
I felt like I was 6 years old again, back in grade school, incapable of understanding why people make no sense. They don’t follow the rules! They aren’t polite and kind! My Mommy taught me that you are supposed to have good manners and Be Nice. Thumper’s Mommy (Bambi) said “If you can’t say somethin’ nice, don’t say nothin’ at all.” These are simple rules! They aren’t hard to follow! But…kids aren’t nice. They don’t use good manners. They’re breaking the rules. I don’t understand this. I don’t understand cruelty. I don’t know what to say to it.
I don’t know how to BREATHE in the face of it.
I responded exactly as I did when I was a kid. I felt like the ceiling was coming down on me, the walls were closing in, my vision was tunneling, and I felt my stomach flip and flop and shift around in my torso. I felt pressure building in my chest. I couldn’t make eye contact with anyone. I couldn’t even look at anyone’s face. I wanted to retreat and escape.
And even while I was feeling all those things, I knew I had to pull it together to finish doing my job. So I drew myself up, looked at the passengers deplaning, and plastered a smile on my face as I said “Bye! Have a nice day! Thank you for flying with us!” (Guess all that time practicing facial expressions in the mirror paid off.)
This was the only flight I had to work with this woman, so I didn’t speak to her again and hightailed it off the plane as soon as I could after the last passenger disembarked. I’d recuperated by that point, but there was simply no point in “calling out” her statement. We both had other places we needed to be, and no time to get into a conversation that would surely be heated and complicated.
Prior to getting the diagnosis for Jed, I was chatting with a friend who pointed out that the autism stigma is bigger than the stigma associated with food issues. I didn’t really believe her, simply because I know parents of children with autism and I’ve dealt with many autistic children and their families on the plane, and I had never seen or heard anyone say anything nasty to or about any of these people.
As I said, I’ve been immersed in reading about autism the last three weeks. I’d seen mention in these websites and blogs that the NT (neurotypical) world discriminates against ASD people; however, since I had never seen or heard any of it first hand I honestly thought these claims were perhaps a bit exaggerated.
Consequently, I hadn’t ever spent a moment of my time preparing myself to face such audacious, blatant, cruel discrimination and dismissal from the world at large. It caught me entirely by surprise.
I’ve now seen the autism stigma firsthand. It wasn’t exaggerated. It is real, it is casually and openly expressed, and it is painful.
Now, the truth is? This encounter was with an ignorant, horrible woman whose opinion matters less than mouse droppings. I know that. The pain doesn’t come from the fact that one person in this whole big, wide world slung an insult my way.
The pain comes from two things: first, the obvious fact that I had a total “flashback reaction” to her casual insult. These last few weeks of reading, I’ve realized that one of the reasons I seem so “high functioning” today is that when I was younger, I made ‘Figuring Out How To Be Normal With People’ one of my special interests. It’s a little unnerving to think back on the sheer quantity of time I’ve spent over the years studying social habits in humans. Consequently, I believe I’m pretty good at interacting with people now. To be flung 30+ years into the past, in terms of my ability to relate and cope, at a single utterance was off-putting and somewhat painful.
The second, BIGGEST part of the pain comes from the logical thoughts that followed: does this wretched woman’s brazen, nonchalant expression of discrimination and dismissal come from her confidence that this sentiment is the prevailing opinion in the (NT) world?
If so, my family and I are facing a battle I hadn’t foreseen. If so, this battle has surely already been waged for at least a decade by the families with autism that came before us; if they’ve made so little progress in that time, it does not bode well for there being a successful conclusion to this battle against ignorance before my son is old enough to be aware of it…and hurt by it.
The idea of Jed ever being smacked down with such ignorant cruelty hurts my heart in ways only a mama can know.
The good news is, I don’t stay hurt for long. After the hurt comes pissed, then steely resolve. A plan must be made to handle such incidences in the future!
I’m usually quite quick-witted, but obviously I had a sensory overload and shut down in the face of this particular method of attack.
I think I need a social story to help me work out proper comebacks to situations like this. Anyone know of any they’d recommend?
And please, tell me this was an aberration! Please tell me the battle against ignorance has made more progress than this encounter would lead me to believe! Please tell me my amazing, brilliant son isn’t going to be dismissed this way his whole life! And if he IS, then please help me discover how to prepare him for it and guide him through it. Thank you!