We are so honored to have Guru Client, Heather T. guest posting about her experiences with Autism at Disney World. Thank you Heather!
For 4 years now, my 11yo daughter has been diagnosed with Autism, and it’s changed my view on the world. In every day life, she may appear slightly off, but she has come so far and really does not come off as “screaming” autism.
Because she’s so mild mannered, and typically easy going, I had some lofty ideals for when we went to WDW for her first trip. Like a good mom, and a planner, I have talked with people, read books about special needs at WDW, read articles, asked questions, and overall, felt very prepared for what would happen at WDW.
Overall, I knew she would probably have some mild issues with crowds and noise- these are issues she has everywhere. We packed her MP3 player, and I gave her a beaded bracelet with my phone number, and the word “Autistic” on it for her to wear. I gave her instructions on who to talk to if she got lost. I felt very prepared.
Until we arrived. We went to Downtown Disney right from the airport with my father-in-law, a Florida resident, and noticed immediately that she was not herself. She was jumpy, she was making noises I had never heard, she was hiding, and she was drifting off, all things I had never witnessed her doing before.
By the time we left, she was shutting down- she was barely answering questions, and just walking in a straight line. She was also stuck on singular topics. It became very apparent that this trip would not be as easy as I had hoped. We left Disney, and spent two days with my father in law on the GulfCoast before arriving at Disney officially, for our 9 day stay at Caribbean Beach Resort.
On our first day, we did not arrive at a park until nearly 5pm, and we really did not do much, because we had meal reservations at 6pm. Almost as soon as we got off the bus at Epcot, the jumpy, squawking, scared child was back.
At 11, she is not a hand holder. She finds it embarrassing to hold someone’s hand. But at Disney, she sought my hand out anytime a crowd appeared. The changes we saw were amazing, to say the least. She regressed so much, and was just an entirely different child.
We saw a few traits and tics we had not seen in years, but we also saw a lot of new traits and tics we have never witnessed with her. I think it’s important for any family with autistic children, or children with sensory issues, to really understand how much that child can change in a place like WDW.
My daughter exhibited a large list of traits and tics not seen in daily life, including:
- Hand Flapping – my daughter is a rocker, not a flapper, but at Disney, she did both. At times, she was flapping so much, I thought she would fly away.
- Vocal Tics – She started squawking loudly, as well as smacking her lips, and making clucking sounds.
- Repetition- She would repeat things told to her, or things she would hear, for 5-10 minutes straight at times.
- Voice Changes – Her voice in the parks was high pitched, whimsical, and sing-song like. She sounded like she was 5 or 6 again. This was a constant while we were in the parks, but as soon as we left, she was fine again.
- Wandering – she wandered a lot, but we found if she walked directly behind me, not beside or in front of, she would follow me. This only worked with me.
- Hand Holding – as mentioned above, she held my hand in any type of crowd, and at any time she felt scared. She also did a lot of holding onto my backpack if she was walking behind me.
- Directions – We found it helped her a lot to know exactly where we were going, and how we would get there, so I did a lot of verbal directions while we were in the parks. It was usually step by step directions, when we were turning, how far we would walk, what we would pass, and how long it would take us to arrive where we were going.
- Singing – She made up a song early on the trip about how much she loves to be with her family, but through out the week, she would sing it about random things- rides she loved, characters she enjoyed meeting, and Disney over all. It was usually when she needed to focus on something because it was becoming too chaotic for her.
- Clinginess – If we were in a park, she had to stand by me, sit by me, ride something with me. She refused to sit by someone else. If we left the park, she was fine being with someone else. While we were at the parks, she was left with another adult twice so I could use the bathroom. Both times, I explained where I was going, but it still resulted in near melt-down status because she was scared she lost me.
- “Is it normal to…” She really seemed to pick up on her new quirks while we were at Disney, and often asked me if it was normal to do some of the things she was doing. I reassured her that while it might not be normal for all kids, it was normal for kids with Autism to do many of the things she was doing.
- Laying on the ground – This is not new, but it was a lot more prevalent while we were at Disney. Anytime we stopped moving, she was on the ground. At meals, she was hiding under the table quite often.
It became apparent to me very early on, that my daughter is much more sensory sensitive than I ever realized. Because she has never been in situations that had so much prolonged sensory ‘invasions’ to her, we never fully realized how sensitive she is to what is going on around her- lights, sounds, crowds, it all effected her in a large way.
By about day 3, I had settled in and found ways to deal with these issues, while keeping her as calm as I could. It was a learning experience. I feel I know and understand a lot more of my daughter’s Autism now, than I did before. Since arriving home, nearly all of the things we saw at Disney have gone away. The sole survivor is the squawking sound. She is still making that sound anytime she is surprised.
Next time we go, I will address some of these issues from the start, and know better what to expect. I also plan to go at a much less busy time. Whether it’s the draw of MNSSHP, or the Food & Wine Festival, or the Free Dining promotion, we found October to be very crowded compared to what the crowd level calendars state. Next time, we’ll plan a trip during January or February.
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