Guest Blogger: Ilene of My Family’s Experience with Autism

For those of you that don’t know, April is Autism Awareness month. To help spread awareness, Ilene of My Family’s Experience with Autism has written this post to help families who are planning trips to Disney with autistic children.

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In November, 2008, my husband and I started planning a trip to Walt Disney World for our family of 5. We were determined to make this vacation in 2009 because the twins would be 2, and Disney’s policy is anyone under 3 is free (which would save us a LOT of money). So, we started to plan (because that’s what my husband and I DO).

We determined very quickly a 7-day vacation was right for us and therefore we would have tickets for 7 days (since we would stay on-site). When we left, our older (singleton) son was about 3 weeks shy of 4 and our girl/boy twins were 26-months-old so Epcot was a lower-priority park — in our opinion there was relatively less at that park for kids of that age and as much as my husband and I wanted to spend time at Epcot, this vacation was about our kids, which meant most of our time would be spent at Magic Kingdom (we did do all 4 parks, but only spent one day in each of the others). When we were planning the trip, we knew we needed a strict schedule — we needed reservations for all of our meals so we could guarantee our established home schedule could be followed. We didn’t fully understand at this stage what we were dealing with for our twins — we just recognized they had some “quirks”, which led to us making a lot of “plans”, including signing up for the Deluxe Dining Plan (to guarantee sit-down reserved dining at predetermined times). Both of us established an account on DISBoards and read and posted regularly (I mainly stayed on the families boards while my husband was EVERYWHERE) and learned many things from other visitors to the Disney World parks.

2 days before getting in our car for a 14-hour drive from our home in the DC suburbs down to the Orlando area, we were first told by a developmental pediatrician that both of the twins were “on the spectrum” (an unofficial autism diagnosis). But we weren’t about to change our plans. At that point, we had no idea what we were dealing with, but we felt we knew our kids and would do what we could.

Because of the known “quirks”, we planned EVERY detail of our trip. We memorized the layouts of the parks so we could make b-lines for the attractions we were interested in. We knew what rides and other attractions we needed to visit first and how to manipulate ourselves to be in the “right place at the right time”. We had reservations for 19 of the 21 meals we planned while we were there. We knew the schedules for all the shows in all the parks. We even wrote everything down so we can easily adjust our plans on the fly by conferring with our notes to be sure that things would work out. And overall, the trip was a huge success. But because of autism, there were things that we weren’t quite prepared for.

As I mentioned, our twins’ chronological age was 26 months at this point in time. However, their developmental age (we learned after we returned home and began receiving services) was closer to 14 months. They had no interest in communication. They didn’t respond to their names or follow a point. They were incapable of following simple directions (as basic as “Come Here!”). They thought that running away was just plain FUNNY. So, on their belt loops, we bought and placed dog tags with their names and both mine and my husband’s cell phone numbers. We also did this for their older brother, but he was capable of asking someone for help if he lost sight of us (which happened once or twice during the trip) — all he had to do was pull out a necklace around his neck and someone could help him. I would suggest “tagging” in some way, shape, or form for ANY PARENT. All children can panic when they get lost — this allows anyone they come across to help them. On the occasion our younger son ran off into the crowd (at Magic Kingdom), I was TERRIFIED if I lost sight of him because he WOULDN’T be capable of asking someone for help. But this was the only time either of them truly ran off — thanks to our double jogger stroller and the leashes we bought just before the trip (all right, harnesses, but at least they were cute).

The other problem we ran into on this trip was the shows (of all types, including parades). We knew better than to attend the fireworks and we had the excuse that it was after bedtime, so I don’t know if that would have been the same. But a lot of autistic children have a lot of problems dealing with sensory processing. It’s very easy for them to be overloaded and they don’t know how to calm themselves down. EVERY time we took our younger son into a show, as soon as the lights went down, he would panic. He would scream and fight to get out of his seat. He would kick. He would bite. He would make his body both rigid and limp, depending on what he felt would get him out. My husband and I would take turns taking him out of every show we attended (except 1, which we managed to talk him through) all week long. This included Turtle Talk at Epcot (the Seas attraction). He just couldn’t sit through it. I’m really not sure why. I don’t know if I will EVER know why. But here we are almost exactly a year later, and we’re still in the same place in terms of shows (but now we’re working on it).

If you are planning on taking any trip with an autistic child (or more than 1), here’s my suggestion to you. Come prepared. Have a set plan, but be prepared to abandon that plan if it’s not working and have a back-up plan ready to go. Don’t even flinch. Try to keep everything as close to normal “routine” as possible. And PREPARATION IS EVERYTHING. This is the thing that we didn’t know before we left for Orlando that I wish we did. We made the trip work. And we had a wonderful time. But now we’re thinking ahead to future trips and starting to think out some of our plans (right now, we hope to go in either 2011 or 2012). We have already decided that certain milestones need to be reached before we can go again. They need to be able to sit at a table for meals. We would really like for them to be able to behave at the table without constantly fearing food being thrown (already made tremendous progress on this goal). And we have to learn how to help our younger son sit through a show without panicking. But we can’t wait to go back to visit The Mouse!!!!!!

~Ilene

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For more information on Autism and Autism Awareness Month please visit Autism Speaks or The Autism Society of America

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4 comments

  1. The Adventures of Grunty and Chubbs

    Ilene – your kids are lucky to have parents dedicated to making their lives happy and full. Love to all of you!

  2. DRS Are The Best

    Thanks Grunty and Chubbs — hearing that means a lot to me!!!!!!

  3. I can't imagine taking 3 kids that young would be easy in any case, I couldn't imagine having take two with sensory issues. It sounds like you did it the right way and things went really smoothly. Now I just have to remember the dog tag thing when we go to Disney next year.

  4. Just stumbled upon this . . . I used to work at DisneyWorld and saw a kid with a shirt on stating that he had autism and asking for patience. I don’t know if this is standard or even acceptable, but as a “performer” who was unable to speak, it sure helped me to know how to act when the child and his family approached me for photos and autographs!
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