First Day with my Autistic daughter

[AnnaNonamus]

I will admit it now. I expected Disney to be a breeze with my autistic daughter Ok. Maybe not a breeze, but I was expecting much easier than I have gotten. Last year, I went down with my best friend to help with her two kids, one of which is also Autistic, and has many mannerisms that are much worse than my daughter has- much more inflexible, much more touchy. We got through Disney with very little issues.

We arrived today, and only spent about 3 hours at Downtown Disney (90 minutes of which were spent at Planet Hollywood eating) before leaving for the Gulf Coast until Sunday. We don't "officially" arrive until Sunday afternoon.

My daughter has somewhat mild autism. She is generally pretty easy going. She has some issues with crowds and noise, but I can usually redirect her, and keep her focused.

Today was an exercise in futility. I saw a side of Gillian I have not seen in several years. Here are all the things she was doing-

-hyper focused on 1 thing, and got extremely repetitive about it (in this case, she wanted to swim, and normally, she will stop asking when I tell her that we are done with the topic until it's time to address it- in this case, later that afternoon). She was asking every other minute- not an exaggeration.

- scared of getting lost in the crowds

- holding my hand a lot- at 11, this is something she rarely does at all anymore.

- required physical redirection to follow the others in the group - my FIL in the lead, then my older daughter, then Gillian, followed by me (to ensure she stayed withthe group). More than a few times, I had to gently direct her by turning her shoulders.

- sitting on the ground in the middle of walkways, stores, etc.

- being very loud and repetitive, even when redirected or being asked to stop (which usually does the trick- she normally responds very well to verbal and visual cues for social behavior)

- getting lost in the crowd by slipping in between people that I could not get past- she usually needs a single reminder, maybe 2 on an outing that she needs to ask to go around, or wait until the path is clear. She was just charging forward without pause, despite lots of reminders and verbal cues.

- getting scared when she and I lost track of my 17yo and my FIL- she's at down in the middle of the store and was about to start crying.

- not understanding or grasping basic directions, or answers to her questions. She has a very logical mind, so when she asked me why we couldn't go to the parks just to look at the rides, my answer of not having a ticket for today just left her with a blank look.


I have always been pretty good with redirection, verbal and physical cues (she usually responds to a snapping sound, or if a visual cue is needed for her attention, she responds to me putting a finger in her eye site and drawing the finger back to my nose). She almost never melts down- she was way past that today. She was shutting down in a big way.

Walking through the Lego store, she just stopped hearing anyone around her, and from there on out, to get her attention, I had to put my hands gently on her shoulders, lean in, and talk directly next to her ear.

I should mention, she has rarely ever been schedule based- she could handle small change with no issue. If we normally go to school at 8, but it has a delay, she thinks nothing of it.

Now, I am dreading the parks. We arrive Sunday. My FIL is not going with us, but my aunt is flying in to meet us and will be there the entire time. However, she has almost no experience working with Gillian when she is like this.

I do have a list of quite spots in each park, and tips for different shows and what not, but I have a feeling she and I will be spending much more time outside of the parks than in them.

She is so very excited, too. For 6 months, the only word to come out of her mouth is Disney. Even today after we left DTD, it was pretty single minded towards "We're going to Disney!"

-sigh- any suggestions would be greatly appreciated. I have had a loose schedule in mind for each day - park 1 in the morning, resort from 1-3/4pm for pool time, then park 2 in the evenings. We have no parks Tuesday until MNSSHP, and no parks at all Thursday, both as down time for her (and my feet and back!). I am planning to make it more of a set schedule, and letting her know each day exactly what park we will be going to.

 

[livndisney]

I will admit it now. I expected Disney to be a breeze with my autistic daughter Ok. Maybe not a breeze, but I was expecting much easier than I have gotten. Last year, I went down with my best friend to help with her two kids, one of which is also Autistic, and has many mannerisms that are much worse than my daughter has- much more inflexible, much more touchy. We got through Disney with very little issues.

We arrived today, and only spent about 3 hours at Downtown Disney (90 minutes of which were spent at Planet Hollywood eating) before leaving for the Gulf Coast until Sunday. We don't "officially" arrive until Sunday afternoon.

My daughter has somewhat mild autism. She is generally pretty easy going. She has some issues with crowds and noise, but I can usually redirect her, and keep her focused.

Today was an exercise in futility. I saw a side of Gillian I have not seen in several years. Here are all the things she was doing-

-hyper focused on 1 thing, and got extremely repetitive about it (in this case, she wanted to swim, and normally, she will stop asking when I tell her that we are done with the topic until it's time to address it- in this case, later that afternoon). She was asking every other minute- not an exaggeration.

- scared of getting lost in the crowds

- holding my hand a lot- at 11, this is something she rarely does at all anymore.

- required physical redirection to follow the others in the group - my FIL in the lead, then my older daughter, then Gillian, followed by me (to ensure she stayed withthe group). More than a few times, I had to gently direct her by turning her shoulders.

- sitting on the ground in the middle of walkways, stores, etc.

- being very loud and repetitive, even when redirected or being asked to stop (which usually does the trick- she normally responds very well to verbal and visual cues for social behavior)

- getting lost in the crowd by slipping in between people that I could not get past- she usually needs a single reminder, maybe 2 on an outing that she needs to ask to go around, or wait until the path is clear. She was just charging forward without pause, despite lots of reminders and verbal cues.

- getting scared when she and I lost track of my 17yo and my FIL- she's at down in the middle of the store and was about to start crying.

- not understanding or grasping basic directions, or answers to her questions. She has a very logical mind, so when she asked me why we couldn't go to the parks just to look at the rides, my answer of not having a ticket for today just left her with a blank look.


I have always been pretty good with redirection, verbal and physical cues (she usually responds to a snapping sound, or if a visual cue is needed for her attention, she responds to me putting a finger in her eye site and drawing the finger back to my nose). She almost never melts down- she was way past that today. She was shutting down in a big way.

Walking through the Lego store, she just stopped hearing anyone around her, and from there on out, to get her attention, I had to put my hands gently on her shoulders, lean in, and talk directly next to her ear.

I should mention, she has rarely ever been schedule based- she could handle small change with no issue. If we normally go to school at 8, but it has a delay, she thinks nothing of it.

Now, I am dreading the parks. We arrive Sunday. My FIL is not going with us, but my aunt is flying in to meet us and will be there the entire time. However, she has almost no experience working with Gillian when she is like this.

I do have a list of quite spots in each park, and tips for different shows and what not, but I have a feeling she and I will be spending much more time outside of the parks than in them.

She is so very excited, too. For 6 months, the only word to come out of her mouth is Disney. Even today after we left DTD, it was pretty single minded towards "We're going to Disney!"

-sigh- any suggestions would be greatly appreciated. I have had a loose schedule in mind for each day - park 1 in the morning, resort from 1-3/4pm for pool time, then park 2 in the evenings. We have no parks Tuesday until MNSSHP, and no parks at all Thursday, both as down time for her (and my feet and back!). I am planning to make it more of a set schedule, and letting her know each day exactly what park we will be going to.

Take a deep breath!

Some tips I have learned: Lego store is hard on most people. DTD is stressful.

Each park has a first aid that can be used to "refocus" without distraction.

You can "escape" out the back entrance at Epcot for space. There is a huge sidewalk around the water with very few people.

There is a garden in UK with space.

At MK the rocking chairs in front of the HM and Hall of Presidents can be soothing.

At MK there is a landing down by the water with very few people.

Peoplemover gives you time and space to refocus.

 

[suzyq0626]

You may find that she is more back to her normal after she spends a day or 2 in the park and adjusts herself to the "Disney" routine. My daughter sounds somewhat similar and although she was a lot younger than yours last time we were there, I remember thinking after our first day that it was an awful decision to come, but another day or 2 and she was back to what I expected of her and she (and I) could handle things better. With that in mind, I might consider making your first day or 2 light park days if needed and do some fun stuff at your resort if you need a longer break than you have planned. We also sometimes had a bigger morning snack than we normally would and then had lunch back at the resort where it was nice and quiet since everyone was at the parks. And then had our break till late afternoon park time.

Also, did you find a list of quiet areas in the parks or did you make it yourself? I could certainly use an idea of places for our trip in January.

Lots of luck!
Susan

 

[Nixie]

As a person "on the spectrum", your daughter's reaction to being in Disney doesn't surprise me in the least. It is hard to explain how absolutely overwhelming Disney is for a person with Autism; the crowds, the noise, lights, moving things, etc.... Everywhere you look there is something going on. It is hard to filter out everything and very easy to get overwhelmed.

Does she have something that she does to like "tune out everything? When I start getting overwhelmed, I play on my phone; usually a game like Candy Crush or something like that that requires a little concentration. I have the ear pieces that I put in my ears to drown out everything else. It takes my focus away from everything going on beside me and makes me focus just on one thing. It kinda like resets my head for lack of a better way of describing it. I know that doesn't work for everyone and some people need to completely remove themselves from the situation to "reset". The best way to describe it for me, it is like having a huge traffic jam in your head. Everything is competing for the same space, but nothing is going to make any headway until that jam is cleared. All the stimuli in Disney are all competing at the same time for my attention. There is no way I can give attention to all of that all at the same time, so that is why it is so easy to become overwhelmed. My brain just can't process new info while amidst that kinda gridlock.

My best advise is to be understanding. Take things at her pace. If she likes to know things ahead of time, maybe make out a schedule she can see. Try and talk about what to expect while she is there; like what kinda things she will see, smell, hear, etc. There is probably no real way to prepare her for the assault on the senses that Disney causes, but maybe through some talking about it she can better cope?

I know others on here will chime in with more tips. These are the few I can think of right now

 

[SueM in MN]

This is a link to WDW's new Guidebook for Guests with Cognitive Disabilities.
https://wdpromedia.disney.go.com/me...disabilities-services/wdw_cognitive_guide.pdf

It has a lot of good hints, including a page of quieter places to go to in the parks.

Downtown Disney is normally very crowded, chaotic and difficult (not just for people with disabilities). But, right now, with all the construction going on, it is even worse than usual.
I wonder if the construction made the difference for her this time?
There are normally a lot of different sounds, smells, etc, but the construction would be adding a lot of new things.
Since many people with autism are hyper-sensitive to sensory input, I wonder if she is reacting to some of the things that are evident to her that the rest of you would not notice. It could be things like the amount of dust in the air, faint smells of fuel from machinery and noises from machinery and things like the walkways that at blocked off or have construction barriers up.

 

[SueM in MN]

I don't know if this link will work, but WDW News Today has pictures of how extensive the current DTD construction is.
http://wdwnt.com/photos-of-disney-springs-construction-from-above-on-october-16th/

 

[CynJ]

I don't have children, autistic or not, but I used to work with adults with autism. My initial thought after reading your post was that it had to be almost torture for her to be that close to WDW and not be "starting" the WDW trip she's been looking forward to for so long. DTD may not have been the best choice for your afternoon as there is Disney everywhere adding to her already intense excitement/focus on getting to the parks.

Hopefully your Gulf coast visit goes well and you can then re-kickstart your WDW experience with everyone relaxed and on track.

 

[tobikaye]

You indicated that you arrived the same day you went to DTD. Did you fly or drive down? Could the travel along with going somewhere new have thrown her off a bit?

As mentioned above, DTD can be hectic. My sister is not on the spectrum, but I assist with her Special Olympics team that has various diagnoses. I know when we go to the state games, many of our athletes have melt downs the first couple of years. Many are the ones that normally are the most easy going, but they are not used to the dorms we stay in or the busy schedule we have to keep getting to events.

 

[lovethattink]

DTD is very overwhelming for my son as well. We can only do very quick stops there. Thirty minutes and he's ready to go. The parks go much better for us. Hopefully, you'll find that's the case for your dd too.

 

[DLgal]

The first day is always the worst.

From here on out, try to follow her lead as much as you can. She will be much more relaxed and enjoy it if she can have a sense of control. If she wants to swim, swim. If she wants to stare at a fountain for an hour, let her. Don't take her "visiting" to other resorts an show her the pool if she cannot swim in it, etc.

Also, bring along headphones and a mobile device so she can have some "tune out Disney" time when she needs it.

 

[bookwormde]

Quite honestly for the situation she was in I think she did pretty good.

Travel days are always tough, with dining out, expectations, the general overload and unusual environment, I would have expected full blown melt down even from our high functioning kids.

My advice it to take a slow pace and take your cues form her.

 

[WheeledTraveler]

I hope the rest of the trip goes well!

I have to agree with the others than DTD on the same day as arriving can overwhelm many people. I'm not on the spectrum and only have very mild sensory issues and even off-season in the evening at DTD starts to be too much sensory overload for me (not on a travel day). I'll only ever go (day or evening) on a mid-week, off-season day. Also, I'm a wheelchair user which means I might be more at your daughter's height and being lower can make it worse, especially with any sort of crowd. Also, I have a friend who adores the DTD Planet Hollywood and I find it incredibly over stimulating. More stimulating, even, than most of my experiences in the actual parks. I also agree with the others that if you have some things that can be used as a sensory break for her, it would be good. A stroller or wheelchair may also give her some protected space with distance from other people. I'm positive one of the reasons I haven't ever had to make a "quick exit" from DTD is that I've only ever been there as a wheelchair user.

Hopefully with some recovery from travel and a chance to go at her pace, the rest of your trip goes well!

 

[sharadoc]

My DS with ASD wants to hold my or DH's hand at Disney World. We happily do as his comfort and safety are far more important than what other people think!

 

[JenDett]

We just got back from a week at the parks. My DS's autism is usually fairly mild. Some people have argued with us that he doesn't even have autism. By day 3, it was perfectly clear to anyone passing by that he was autistic. After having to pull him out of line to meet Mikey (where he beat the crap out of me and bit me) I sat down on the ground at the entrance just sobbed. I thought it might be a bit bad, but I NEVER anticipated it would be what it was.

If I had it to do over again, I would plan on spending no more than 3 hours at a time in the park, and leaving to go to the pool. Jumping in the water gives him the sensory input he needs, and after the one day that we were able to swim, he was much better.

I will also take ear protection next time and let that help block out the audio input.

I hope your trip gets better.

 

[AnnaNonamus]

Thank you everyone- sorry I did not reply sooner. I had spotty Internet over the weekend, and just got to the resort itself yesterday.

She was still pretty high on Autism mode all weekend, but much better than Friday. We arrived yesterday at our resort, but our room wasn't ready until 2 hours later, then we had an almost hour wait on our luggage, so it was 4 when we got to Epcot.

Gillian was alternating between wildly excited, and meh. She did great on the bus, and then at the park, we had to get our PhotoPass+ which included a wait, and then off to guest relations for her DAS pass (which we never had to use).

She was chomping at the bit to go on Mission Space- she has been watching that one on the documentaries for 6 months. She loved it.

We had dinner t Garden Grill, and it was a bit off putting to her (new restaurants always are). We sat her in the corner so there were less people next to her, and I managed to get her to try the turkey (she loved it), as well as the stuffing (loved), and sweet potatoe fries (hated those), and some macaroni (she was indifferent). They brought her out turkey without gravy, and she was upset because she thought she was being way too picky, and didn't want the staff to be offended. Then she got upset because she hated the punch (I got her the one with the light up Tink, which she LOVED and showed EVERYONE all night), but I reassured her that she could change her mind on her drink, and it was fine, so she picked milk with a lengthy explanation from her about why she didn't like the punch.

The characters were priceless with her, though. She bounced right up and just hugged Chip and Dale so tight, and they were nuzzling right up to her.

After that it was all about keeping up with her. Gillian needed constant directions of where we were going, which way to turn, where we would end up before we got there, so I talked like all night long. And I pretty much speed walked from the Land to the character spot, whee she met more characters, then speed walked to the entrance and to the bus to hollywood studios studios.

She LOVED tower of terror (that was her other MUST DO ride. After one time, she wanted to keep goin on it, but we opted to loo around first.

We did go on it once more, and she was telling everyone very loudly that they would all be murdered on the ride- I hushed her on that one, telling her some people might not enjoy her sense of humor the way I do. After the second ride, she was dead on her feet, and the park was closed, so we headed out, and got stuck standing on the bus - a situation I had not thought about. Thankfully this time, we were in the very front of the bus- no one on the side of us where she was standing, and she thought standing was great fun.

Today is our first full day- my initial plans are to hit MK this morning, then back to the resort around noon, then we have ADR's at Sci Fi.

Wish me luck with all the speed walking I am doing, I hope I drop 30 pounds

 

[disney david]

Thank you everyone- sorry I did not reply sooner. I had spotty Internet over the weekend, and just got to the resort itself yesterday.

She was still pretty high on Autism mode all weekend, but much better than Friday. We arrived yesterday at our resort, but our room wasn't ready until 2 hours later, then we had an almost hour wait on our luggage, so it was 4 when we got to Epcot.

Gillian was alternating between wildly excited, and meh. She did great on the bus, and then at the park, we had to get our PhotoPass+ which included a wait, and then off to guest relations for her DAS pass (which we never had to use).

She was chomping at the bit to go on Mission Space- she has been watching that one on the documentaries for 6 months. She loved it.

We had dinner t Garden Grill, and it was a bit off putting to her (new restaurants always are). We sat her in the corner so there were less people next to her, and I managed to get her to try the turkey (she loved it), as well as the stuffing (loved), and sweet potatoe fries (hated those), and some macaroni (she was indifferent). They brought her out turkey without gravy, and she was upset because she thought she was being way too picky, and didn't want the staff to be offended. Then she got upset because she hated the punch (I got her the one with the light up Tink, which she LOVED and showed EVERYONE all night), but I reassured her that she could change her mind on her drink, and it was fine, so she picked milk with a lengthy explanation from her about why she didn't like the punch.

The characters were priceless with her, though. She bounced right up and just hugged Chip and Dale so tight, and they were nuzzling right up to her.

After that it was all about keeping up with her. Gillian needed constant directions of where we were going, which way to turn, where we would end up before we got there, so I talked like all night long. And I pretty much speed walked from the Land to the character spot, whee she met more characters, then speed walked to the entrance and to the bus to hollywood studios studios.

She LOVED tower of terror (that was her other MUST DO ride. After one time, she wanted to keep goin on it, but we opted to loo around first.

We did go on it once more, and she was telling everyone very loudly that they would all be murdered on the ride- I hushed her on that one, telling her some people might not enjoy her sense of humor the way I do. After the second ride, she was dead on her feet, and the park was closed, so we headed out, and got stuck standing on the bus - a situation I had not thought about. Thankfully this time, we were in the very front of the bus- no one on the side of us where she was standing, and she thought standing was great fun.

Today is our first full day- my initial plans are to hit MK this morning, then back to the resort around noon, then we have ADR's at Sci Fi.

Wish me luck with all the speed walking I am doing, I hope I drop 30 pounds

glad you had a great time so far and hope all goes well for today. Also happy she had fun with chip and dale they are the best.

 

[curemyreed]

We just got back from a week at the parks. My DS's autism is usually fairly mild. Some people have argued with us that he doesn't even have autism. By day 3, it was perfectly clear to anyone passing by that he was autistic. After having to pull him out of line to meet Mikey (where he beat the crap out of me and bit me) I sat down on the ground at the entrance just sobbed. I thought it might be a bit bad, but I NEVER anticipated it would be what it was.

If I had it to do over again, I would plan on spending no more than 3 hours at a time in the park, and leaving to go to the pool. Jumping in the water gives him the sensory input he needs, and after the one day that we were able to swim, he was much better.

I will also take ear protection next time and let that help block out the audio input.

I hope your trip gets better.

This is from me to you:

 

[curemyreed]

Thank you everyone- sorry I did not reply sooner. I had spotty Internet over the weekend, and just got to the resort itself yesterday.

She was still pretty high on Autism mode all weekend, but much better than Friday. We arrived yesterday at our resort, but our room wasn't ready until 2 hours later, then we had an almost hour wait on our luggage, so it was 4 when we got to Epcot.

Gillian was alternating between wildly excited, and meh. She did great on the bus, and then at the park, we had to get our PhotoPass+ which included a wait, and then off to guest relations for her DAS pass (which we never had to use).

She was chomping at the bit to go on Mission Space- she has been watching that one on the documentaries for 6 months. She loved it.

We had dinner t Garden Grill, and it was a bit off putting to her (new restaurants always are). We sat her in the corner so there were less people next to her, and I managed to get her to try the turkey (she loved it), as well as the stuffing (loved), and sweet potatoe fries (hated those), and some macaroni (she was indifferent). They brought her out turkey without gravy, and she was upset because she thought she was being way too picky, and didn't want the staff to be offended. Then she got upset because she hated the punch (I got her the one with the light up Tink, which she LOVED and showed EVERYONE all night), but I reassured her that she could change her mind on her drink, and it was fine, so she picked milk with a lengthy explanation from her about why she didn't like the punch.

The characters were priceless with her, though. She bounced right up and just hugged Chip and Dale so tight, and they were nuzzling right up to her.

After that it was all about keeping up with her. Gillian needed constant directions of where we were going, which way to turn, where we would end up before we got there, so I talked like all night long. And I pretty much speed walked from the Land to the character spot, whee she met more characters, then speed walked to the entrance and to the bus to hollywood studios studios.

She LOVED tower of terror (that was her other MUST DO ride. After one time, she wanted to keep goin on it, but we opted to loo around first.

We did go on it once more, and she was telling everyone very loudly that they would all be murdered on the ride- I hushed her on that one, telling her some people might not enjoy her sense of humor the way I do. After the second ride, she was dead on her feet, and the park was closed, so we headed out, and got stuck standing on the bus - a situation I had not thought about. Thankfully this time, we were in the very front of the bus- no one on the side of us where she was standing, and she thought standing was great fun.

Today is our first full day- my initial plans are to hit MK this morning, then back to the resort around noon, then we have ADR's at Sci Fi.

Wish me luck with all the speed walking I am doing, I hope I drop 30 pounds

Here's one for you, too:
Glad the trip has improved from your first day at DTD.

 

[tkbbmom]

I am so glad your trip is improving!

And thank you so much for posting your experience and for all those who gave ideas.

We are going in Nov. and our first day at Disney is we have a non-park day and had planned on DTD to just be able to "relax" from our 9+ hour car ride the previous day. My plans have us checking into AOA - wondering around it for awhile and then heading to DTD for lunch at Splitsville and bowling (ds has begged for this), Lego store, and then back to the resort to swim. I considered Quest if we get our tickets early -- our pkg begins the 2nd day w/ a switch of resorts.

Now I'm re-thinking if DTD will be a good first day. DS won't like the construction -- unless I can make a game out of naming construction vehicles, or something like that. The older kids liked the idea of a non-park first day -- but maybe it will be too much for ds.

I have the fp+ scheduled for the pkg days -- it won't allow me to schedule for the other day since we don't have tickets for that day. Maybe if I start showing him pictures of the construction, talking more about the plan, and keep reminding him he gets to do Splitsville and swim in the big blue pool first it will help.

 

[bookwormde]

Glad to hear she is having fun, I am always amazed how resilient our kids are