Please, Disneyland: Do Right By Your Autistic Fans

Disneyland train! Disneyland train! (Feb 2013)

Update 10/5/13: Looks like the new policy will indeed acknowledge diversity in disability and offer differing accommodations as a result. Woot! So grateful and relieved.

Leo is singing a song about Mickey Mouse and Donald Duck right now, because all things Disneyland are never far from his mind. He asks to go to Disneyland every single day of his life, and if he hadn't been singing that song, he'd probably have been watching California Screamin' roller coaster videos on YouTube, or looking through pictures of his own 2011 trip to the Land of Mouse.

Leo really, really loves Disneyland. Really loves it. It is his happy place, one of the few places I know he will have a good time all day long, one of a handful of not-our-home places I feel fully comfortable taking him.

That is why I am so downhearted about the recent announcement that the park will be discontinuing the Guest Assistance Card that made Leo's trips to Disneyland possible. If Leo doesn't have a GAC, we can't go. End of story.

I've written about Leo's adoration of The Happiest Place on Earch before, and why the Guest Assistance Cards matter.

Leo's visit was a huge success, and Disneyland turned out to his Land of Yes. He got to do exactly what he wanted all day long, directing the action according to his interests and impulses -- an unprecedented freedom for a boy with a heavily structured life. He was also never bored, which can be an issue for people with communication challenges. Because of a Guest Assistance [Card] the Mouse thoughtfully provides for people whose behaviors make it difficult to wait in lines, Leo could get right back on any ride he liked, as many times as he wanted.

You have to understand: our love of the GAC is not because we get to skip lines and blow raspberries at all the chumps who don't. Skipping lines is not a convenience but a necessary accommodation for our boy. Because he is autistic. Because of his specific disability.

Leo can wait in lines, but not always. Not lines of Disneyland length. Not without melting down due to the crowds, the noise, the expectation based on previous experience that he will not have to wait in lines longer than 20 or so minutes. Without the GAC, Disneyland is effectively barred to my son.

Even with the GAC, it can be difficult -- there is no GAC for park entry lines, so when those lines were longer than he was used to the last time we visited, Leo ended up having a spectacular meltdown. Please believe me, he really does need GAC accommodation; he doesn't deserve to be a public spectacle just because of his neurology.

I understand that Disney is planning an alternative to the GAC: the Disabled Assistance System (DAS), which includes a system of going to kiosks to get return times for the most popular rides. Which incorporates back-and-forth time for DAS users only. People with disabilities and their families only. Which means additional complications and fewer ride times for those for whom going to Disneyland is already much more complicated and so already includes fewer ride times.

I have heard from several different sources that Disneyland discontinued the GAC because people were rampantly taking advantage of it, either falsely claiming disability or in some cases hiring disabled people so their non-disabled kids could skip lines.

Happiest boy, happiest family (Feb 2013)

My reaction: So what? There will always be losers people who game accommodation systems. But in a fair and just society, you don't take away (or complicate) accommodations for people with disabilities just because non-disabled people are taking advantage of them and making other non-disabled people mad. Especially as I've never heard from any of our Disneyland-loving, GAC-using friends about being disadvantaged due to too many other GAC users.

There are so many other things that make Disneyland wonderful for Leo: Hotel pools that open at 9 AM. Cheerful and accommodating staff. Beer in California Adventure (OK, OK -- that one's for me). But the GAC is the Disneyland matter that matters most for our family. I will continue to monitor the DAS as it develops, and learn from others about whether it could work for us. I hope so, because I had just started to plan our next Disneyland trip. If we shouldn't go, I need to know soon.

Autism: It's Nobody's Fault When It's Hard

Iz is a wonderful big sister to Leo. This is her at last week's family reunion, letting Leo know that the group photos won't take that long, explaining that if he could just sit for a minute, then he can go back to the playground even sooner, and that he's being awesome and patient.

I don't have a photo of her and Leo from yesterday, when she got into a teen defiance spiral while we were in the car, and wouldn't stop yelling, wouldn't stop shrieking even when I said she needed to stop because she was upsetting Leo. He ended up losing his temper completely and whomping her. I wouldn't want a picture of that.

Afterward, she cried and cried and said she was sorry -- but she also said it isn't fair that she has to behave in certain ways so Leo won't get upset. I said I was really sorry he hit her, and I was glad she was OK -- but that the situation was completely preventable. I reminded her that Leo has both sensitive hearing (yelling is painful) and extreme emotional sensitivity (if other people are upset, he becomes even more so and will do anything to make it stop). Getting upset was not his fault. If we want to help him control himself, we have to control ourselves. (That it is never acceptable to yell the way she was yelling is another, puberty-driven issue.)

Accommodation is part of being part of an autism family. It's just what we do. And while we may wish things were easier for Leo because it is hard to be intensely autistic in an NT world, and while I understand that it's not easy for kids and even parents to have to change their behaviors for another child's sake -- accommodating others' needs is the deal in any family. It's just that accommodations can be more obvious when a family member is disabled.

I told Iz and Mali that it's OK to discuss situations that are hard. But I also told them it is not acceptable to blame Leo, or resent him, because of circumstances over which he has no control or which are part of his autism (e.g., they are welcome to chastise him if he steals a piece of their pizza).

Leo is always doing his best, he just got through a week of chaotic family gatherings, his sisters know he's a capable kid. He also needs us to support him as best we can, and avoid avoidable crises. He deserves nothing less.

Side note: I've been blogging for 9 years as of yesterday. And this is my 2,500th post. Holy hell.

A Separate Peace

Jo Spanglemonkey gave us her extra IKEA swing chair more than two years ago. Last week we finally installed it.

Leo needed some time to believe the new swing was real, and permanent. He kept circling back to it, sitting on it for a few moments of exhilaration and disbelief, going off to do something else, and then coming back and finding out that *the swing was still there.*

Another feature that makes our house a happier place for Leo and his sisters and encourages independent play, plus makes us more of a destination for friends and family: check!