By now, if you are reading this, you've probably heard the news story about the pilot who made an unexpected landing to remove a girl with autism from his plane, after her mother requested a hot meal for her so she wouldn't have a meltdown. If you haven't, here's a link. I'm not going to get into all the ins and outs of this incident, but it seems to have caused a lot of discussion---some of it focusing on the mother and what she should or shouldn't have said and if she was or wasn't handling the situation well. I'm not going to give an opinion there, because I don't have one---I wasn't there. I can't speak just from the perspective of being the mother of an autistic child, because we don't speak as a group. Autism hits people randomly, and the mothers of autistic kids are not any one type, with any one characteristic.
What I can discuss is the questions this raised for me about Janey specifically---the one autistic girl I know well enough to talk about.
If Janey is having a severe meltdown, she is very capable of hurting people. And she has. The nightmare moment of my whole life so far was when she freaked out in the emergency room at Children's Hospital, bit me badly, tried hard to bite some nurses, threw objects around and attracted a crowd in the room, including some police officers. If I ever have a worse moment than that, I hate to think what it might be.
We don't always have a warning that Janey is about to melt down, or much of one. And even if we do, we can't always fix the situation that is causing the meltdown. I do feel a responsibility to the people around Janey to keep them safe. So---what does that translate to? Do I never take Janey anywhere at all, because there is a chance, however slight, she might melt down and start lashing out? If this is the solution, Janey wouldn't go to school. She wouldn't go to stores. She wouldn't go anyplace. I can't feel, right now anyway, that that is the correct solution.
How do I balance Janey's right to live in society with society's right to be free from being hit, scratched or bitten? I think I have a responsibility to take reasonable precautions. I would not let Janey run around free at a playground full of smaller children. She can be hugely provoked by crying, and sometimes just randomly she lashes out at littler kids. If we take her to a playground, we stay right by her side, and I don't attempt to take her alone to places with a lot of kids. When Janey is out of the house, she is under the direct supervision at all times of an adult.
So, what if I got into a situation with Janey like the one on the plane? What would I do? I'll leave aside for now that we aren't going on any planes any time soon, because we can't afford it and because I am terrified of flying. I'll imagine that somehow we ARE on a plane, and something has triggered Janey---maybe a baby crying. I'm imagining her freaking out, lashing out, acting in ways that sound far, far beyond anything the girl on the plane in the news did. What do I do?
I don't have an answer to that question. I'd of course try to keep her from hurting anyone. I'd try to calm her down. But she would attract attention. It would be a scary scene. I don't know what I'd do. I really have no idea.
Most kids with autism are NOT like Janey. She is not the majority. But other kids like Janey do exist, to be sure. And exactly how we as parents and we as a society deal with them, help them---that is a question we need to figure out. It's a question I personally need to figure out. Janey has much to offer the world. She is amazing in so many ways. But the world is in many ways not set up to deal with Janey, and I am just not at all sure how to handle that.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
5 comments:
You are very wise. I can't imagine being in that situation either as a parent or a passenger on an airplane. I like that you look at it from both sides of the picture. I don't know the answer either.
I haven't seen the video but I think this was the parent that aggravated the situation.
You will never know unless you try it.
My sister can be unpredictable...but she actually does enjoy flying and can handle it. I don't know about anything over 3 hours but she does go on a vacation a couple of times a year with us, right through the security line and all. She really likes 'JetBlue' for some reason.
Most people I think are pretty aware and tolerant. And there are all kinds of mobile devices to keep them occupied anyway!
On my last flight about a month ago a woman with three young children under about 6 turned around & without a word distributed individual small bags filled with hard candy and gum, hot pink ear plugs, and a little rhyme about her kids on how they were good most of the time but *just in case*: here was a little treat from them, and passed these out to all the passengers in my row and the one in front. Totally sweet and disarming:)
About fear of flying: there are workshops held at airports to help people overcome this, you might try one sometime. Maybe even take Janey http://www.usatoday.com/story/travel/flights/2014/03/10/fear-of-flying-airports-airlines/6084677/
I went on plane with my daughter and the rest of the family fearing we would get kicked off the plane but it wasn't that bad for us. My non-ASD son was more of a problem when he decided to stand up in the seat during the landing. In this case, the witnesses said they weren't bothered so I blame the airline and the power mad flight attendants. A lot of them have an attitude from too many passengers complaining. If it's a reasonable request from a passenger there's no need for all the drama.
I have autism and I can really relate, I can suggest if you want to stop her aggression and screaming, I suggest you put her in a pink room. Kitten Kay Sera says that being in a pink room is calming. If she doesn't like pink, the alternatives would be pale blue or green.
I suggest putting Janey in a pink/blue/green room as these colours have been known to stop aggression.
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