Adult with Asperger's, going alone

[keristars]

I was exploring the boards and somehow missed this section, so I posted a very long message to the Adults/SOLO sectionshowthread.php?t=2760812) I will be going to WDW for the week after Thanksgiving, and I will be driving from Jacksonville, where I live.

I am 27 and have Asperger's, albeit milder than many. I wasn't aware of the condition until I was 21, and by then had learned lots of coping strategies, and I've continued to develop them, so most people are unaware that I've an ASD - they just think I'm a bit "weird" socially.

One of the problems I've had when looking for advice for how to navigate a week by myself at WDW is that most of what I've found is for children on the spectrum, not adults. (Of course, that's usually the case when searching for tips for coping with some aspect of an ASD.)

The other thread I began goes into some detail about how my Asperger's manifests at WDW, so I'll try to be more concise here with what I'm trying to prepare for, to get the best advice. I've been to WDW loads in the past, but only a few times in the last 8 years, and this will be the first time I'm going alone. (My baby brother is a CM and might spend a day or two with me, but for the most part, it'll be up to me to take care of my needs. Also, I still live with my parents, because I'm not confident enough to live on my own yet, though I'm mostly independent, except for food.)

So here's my list:

• Being unable to articulate my needs when I'm excited or over-stimulated
• Very low tolerance for dim lighting or fluorescent bright lighting (they tend to make me very anxious)
• Very low tolerance for waiting in long internal lines, like at Soarin' or The Seas with Nemo - it makes me feel trapped and uneasy, especially because of the noise reverberations
• Wandering - though I usually don't have problems with this, I do get lost and distracted very easily while going from one place to another at WDW
• Unable to recognize that I'm hungry, because there are so many other things going on, and then being unable to order food to eat (plus, I'm picky about textures and will not eat any kind of seafood)
• Problems keeping track of time or on a schedule, like for dinner reservations
• Easily overwhelmed by lots of options and choices - such as trying to pick a place to eat, or where to go next
• Not good with people touching me or talking to me out of the blue (I get confused and unable to respond, usually)
• General need for a way to find a quiet place to recoup for a bit, so that I don't shutdown or meltdown

I have learned a lot of methods to cope with these problems, and I'm not worried about taking this trip on my own, but I want to have plans prepared for as many possibilities as I can come up with, so that I don't find myself unable to act. That happens a lot - if something comes up that I don't have anything even remotely scripted for, I get panicky and unable to act.

My current strategy for my food/eating thing is to review the various parks maps my brother will send me (since he's a CM and I need a physical, authentic copy) and mark restaurants that have food that I know I can eat, and how to order it, so that wherever I am when I realize I need food, I can find the closest one. But I'm not sure how to do that for the resorts (nor do I know exactly where I'm staying yet), or how it'll work with a DDP (which my brother says I should get so I don't need to worry about money).

I am also going to take a small flashlight to help me with dark places, and a music player for when I need to have something to focus on that isn't noise (I can't abide ear plugs, so I have to find another solution).

I am mostly worried about the fact that I will be alone and due to excitement about being at WDW, less capable than usual at monitoring my needs. In the past, my brother has done a bang-up job at helping me when I'm in a similar situation (either at WDW or at the Atlanta Aquarium or in St Augustine), but he obviously can't be my aide for the rest of my life!

Also, I have a rotated pelvis that makes standing for long periods difficult. I can walk around the parks just fine (I did Epcot for the F&G Fest in April), but standing in lines is tough. When the pain starts to get to me, my capability for the Asperger's stuff is even lower.


So, any advice for me? I feel kind of awkward posting in the disABILITIES section, since it's really not severe and I'm usually fairly capable, and I've been to WDW loads of times (at least 50!) before and always functioned well (except that I also had lots of meltdowns in the safety of our RV at night at FW), but I'd rather be over-prepared than under-prepared, and this is probably the most appropriate place to ask.

Thanks!

 

[Forevryoung]

You sound much like me in some ways and I'm the same age (no Aspergers diagnosis though) so this is coming from a "been there done that" viewpoint.

1) I ALWAYS carry food with me, especially in Disney. I tend to stick with granola bars and starbursts (candy) because they are easy to carry and wont melt. If I start to get to the "point of no return" when it comes to food because I haven't eaten, I sit and eat my granola bar in a quiet place before I tackle finding something to eat and ordering it. I make sure I eat a starburst or two every hour while standing on line for rides to keep my blood sugar up (besides, the chewing grounds me)

2) When I have to be somewhere at a certain time, I set a phone reminder 10-15 minutes before (phone on vibrate). It keeps me on time for meals and shows that I want to see. It's VERY easy to lose track of time

3) Decide what you are going to do each day BEFORE you get to the park in the morning. Also decide the order that you are going to do it in (reason number 500 why I love Touringplans.com, it does it for you). That way when I walk into the Magic Kingdom, I can enjoy the journey because I know where I am going. I don't have to be overwhelmed making the decision on the spot (something I have trouble with). This will also save you time.

4) There are lots of quiet places- depending on how quiet you need a place to be. Depending on how I'm feeling, a bench out of the way is perfect or I might need a bathroom stall to regroup (and then splash some cold water on my face), sometimes a longer slow moving attraction helps me (although most of them have reduced lightening so it might not help you) or even just finding some quieter entertainment to watch out of the way (something simple like the streetmosphere in Hollywood Studios, entertainers on Main Street, some performances in World Showcase...)

I'll try to think of more ideas besides the general ones.

 

[keristars]

You sound much like me in some ways and I'm the same age (no Aspergers diagnosis though) so this is coming from a "been there done that" viewpoint.

Yeah, it's kind of weird how, since I don't have a lot of the really obvious signs of Asperger's anymore (I learned to stop displaying them or else do things so that they wouldn't come up), it's almost like I don't have the disorder? Except then I get these epic meltdowns when I'm overstressed and other behavioral things that is very much "...oh, right, there it is". It's really nice to be able to talk to parents of girls with Asperger's and show how I was able to learn these things, though. It helps them feel more hopeful, I guess? since no one wants their kid to be a "freak" or social outcast all their life...plus the sensory needs.

The one thing you suggested that probably wouldn't work for me is the day planning. As much as I need to have plans in place to prevent undue stress or inability to function, I can't actually plan my days out. If I were to plan exactly how I go through the park in what order, the slightest variable would throw me out of whack and I'd be unable to enjoy the rest of the day. It's something I learned the hard way! Instead, I like to plan in general what I want to do, and find places in a certain location that I'd like to visit, so that I'm not overwhelmed by choices, but also don't have an exact itinerary. Thus, finding several restaurants and knowing how to navigate them and what to order, rather than a specific one on a certain route.

The idea of bring food is good - I used to carry applesauce in my messenger bag until it exploded, but a peanut butter sandwich might work, or a baggie of sliced apples. I'll probably need to purchase a lightweight backpack for this trip, so I could even get an insulated lunchbag. That'd actually probably be a really good idea - take a small bagged lunch to eat midday in a quiet place, when the lunch crowds are worst, so that I can enjoy the scene-setting and also recoup from the noise a bit. (One of my favorite things to do at Disney is just sit and admire the theming and architecture and landscaping and everything.) I usually don't want to eat real food at that time of day anyway, and if I decide to get something hot instead, it'd be there later.

 

[Mama Who]

Looking at your list, the thing that jumps out as having the most emergent potential is being unable to articulate needs when overwhelmed- and getting overwhelmed is a real possibility at Disney. Could you, for worst case scenarios, carry a card in your pocket that says, "I'm autistic. Please help me get somewhere quiet." that you could hand to a CM if you just couldn't cope?

As far as day planning, rather than "I will ride this, then this, then this..." how about, "I will do Tomorrowland in the morning at at noon, after my alarm reminds me to eat, I will move on to Fantasyland." It gives you fewer choices to contend with but still provides some structure. And, being as you are grown and solo, if everything is peachy you can opt to change it if you wish.

Make good use of fastpass to avoid the problem lines. Consider whether a glow stick will serve in dim places- if it fulfills your need for light it is less intrusive to those around you than a flashlight and therefore less likely to prompt interaction you might not want.

Remember that one of the joys of going solo is that you can go at your own pace. Take breaks whenever you want them and enjoy the trip!

 

[KPeveler]

Seconding the suggestion of glow sticks and written messages. I have a problem explaining my needs to strangers (yeah, it stinks to have a social anxiety disorder and need to explain it to a stranger!), so I wrote a short note ahead of time to help get the GAC I needed.

i also carry with me at all times a list of my diagnoses, medications, and emergency contact numbers. This allows me to hand it to someone if I am all worked up (I have some sensory issues) or too ill to speak clearly.

To reduce contact with strangers, I would keep your headphones in your ears at all times when in lines, even if no music is playing. People generally do not talk to strangers with headphones, assuming you cannot hear them.

 

[kirstenb1]

A small suggestion on packing a snack. They sell eight packs of Jif Peanut Butter that are about 2 or 3 tablespoons each. They have no need for refrigeration, and we dip pretzels or apple slices in them. I often throw one or two of these in my backpack while at WDW.

Also, I always carry a backpack with external pockets. So easy to grab the camera, or park passes to get a fastpass, my sunglasses etc. Don't forget your sunblock (can't resist, it's the Mom in Me!!!)

 

[keristars]

Oh, thanks so much! I wasn't sure I'd get any advice that was suitable, and here I've several responses already today.

Seconding the suggestion of glow sticks and written messages. I have a problem explaining my needs to strangers (yeah, it stinks to have a social anxiety disorder and need to explain it to a stranger!), so I wrote a short note ahead of time to help get the GAC I needed.

i also carry with me at all times a list of my diagnoses, medications, and emergency contact numbers. This allows me to hand it to someone if I am all worked up (I have some sensory issues) or too ill to speak clearly.

The emergency card is a super good idea, so I don't know why I didn't think of it already. My mom even went and got a bracelet with a USB device on it with that information recently, so it's not like I shouldn't have been aware of the idea. That is definitely going on my list of things to prepare. It'll be especially useful to put my brother's info on it, with his shift schedule, even if only for my own reference while I'm there. ("Is he off so we can play yet?")



Do glowsticks help much with illuminating the ground as you walk? That's the primary reason I'd want a small flashlight - well, that and to help with reading maps or menus in dim spaces. I was very disconcerted when in the queue for The Seas with Nemo and Friends, because I couldn't see where I was going if I watched my feet, but if I looked up, I'd inevitably walk into the rail or rock walls.

I haven't used glowsticks in at least a decade, so I don't recall how useful they are for that.

 

[mickeymaker2003]

At Disney, they have LED sticks that function like glow sticks, but they have an on/off switch. They are cheap by Disney standards (only $5) and you can find them on the light up carts or hanging by the keychains in some of the stores (they are clear and about 8 inches long). They have a green, red, and blue sections and can be set to either blink or remain on contantly. My daughter used one as a glow stick when she was nervous about the dark and when you don't want it, you can just turn it off.

 

[JoShan1719]

I have no experience with anyone with Aspergers, so my suggestions may or may not help. I just tried to place myself in CM shoes to see what would help me help you.

-General need for a way to find a quiet place to recoup for a bit, so that I don't shutdown or meltdown
-Being unable to articulate my needs when I'm excited or over-stimulated
Someone beat me to it, but I was also going to suggest note cards. "Can you help me find shade?" "Can you show me where to get a drink?" Things like that.

-Very low tolerance for dim lighting or fluorescent bright lighting (they tend to make me very anxious) I know you've had a couple suggestions for glow sticks. I personally don't think they'll be bright enough. I think a small flashlight, maybe a penlight, would be better.

-Very low tolerance for waiting in long internal lines, like at Soarin' or The Seas with Nemo - it makes me feel trapped and uneasy, especially because of the noise reverberations Maybe you could look into the guest assistance card? I know you'd be taken into a separate line and even though it still might be indoors (for rides like Nemo and Soarin') but it may not be as crowded? I'm not sure if that would help at all, someone else may have a better idea.

-Unable to recognize that I'm hungry, because there are so many other things going on, and then being unable to order food to eat (plus, I'm picky about textures and will not eat any kind of seafood)-Easily overwhelmed by lots of options and choices - such as trying to pick a place to eat, or where to go nextAs someone else mentioned, bring some snacks that you know you like with you. Even if there's too much going on to pick a place to eat you would have the option of taking a moment on a bench to eat a little something until you're ready to decide what to do next. You mentioned your brother was going to send you menus, that's good. Maybe you could pick ahead of time some of the places/foods you'd like to eat and make up index cards for them? Then you could just hand it to whoever is taking the order.

I don't know if any of that was helpful, but I thought I'd try. Good luck!

 

[Bete]

but I would do a trial run at a zoo locally or nearby alone, but not really alone. Have someone you trust to help to be nearby at the zoo with you, but not with you while you navigate the zoo. Your helper could sit in a restaurant all day in the park or somewhere similar; so, you can be alone but still protected if you need assistance. Get some experience at a zoo park before hitting the biggie parks at Disney. The zoo should be pretty similar and it would be a good test for you. Zoos have first aid, too, but not quite as good as Disney ones. You will be able to utilize some techniques and see how they work on this smaller scale at the zoo. I would think there are maps available for the zoo. You can see how well you get around in one. You can go to the restaurants in the zoo and gain some practice there, too. You will navigate the park and see how it goes. If you have a good day you know your techniques are working well; although, I know one day can't necessarily speak for another day. If you have a bad day, you will be able to tweak what's wrong and hopefully do better at Disney.

I would become familiar with all the first aid stations in the Disney parks. There's a nurse in each one. This will be a good place to go if you are about to have a meltdown. Know your triggers; so, you will know when you need a rest. There are even cots in first aid if you need to take a nap.

Since, you are car driving to Disney on your own you may want to consider using a scooter for the parks. I wouldn't ordinarily suggest this, but if you can drive a car I would think you would be all right using a scooter with some practice. You can practice for free on a scooter at home in grocery stores, Wal-Marts, and so forth. You have time before the trip to get use to doing a scooter. If you get a Disney park scooter (your brother should be able to get a discount) you won't have to worry doing the battery every night for charging it and you won't have to navigate a scooter into your resort room or onto a bus or monorail. To get a Disney park scooter you do need to get there early; because, they can run out of them (sellout). It's first come; first serve for them. You get scooters where they rent strollers. This can be located on a Disney map, too ahead of time; so, you know where to go to get one. With a scooter you get handicap access to parades and shows and rides. You can park your scooter in a safe place and walk some if you want to get off of it, as well. You just have to remember to take your key with you when you get off of it. It takes a little practice to manuever a scooter through a ride or show line queue especially with all the people at Disney; so, you may want to park it outside and walk on the rides and so forth. If you get comfortable with a scooter then you can use it inside, too. If you do try using a scooter through a ride queue then go early one morning when there aren't as many people. For shows you can even sit on your scooter and not get off sometimes. Be careful not to forget where you are leaving your scooter. You may want to keep a card with you and write down a reminder of where the scooter is when you leave it parked. This would help tremendously with your pelvis condition and it may help to avoid talking with strangers. You do have to be careful with a scooter; because, the crowds will get in your way and you may have to stop very fast not to run someone over. I would let everyone go ahead and then I would exit a show and so forth. Scooters have baskets to hold your belongings, but you have to remember to take your belongings with you on rides and such. It can be cold at Disney World at the time you are going especially in the morning and at night. The basket is a great place to keep a sweater or sweat shirt or even a small throw blanket. Most bigger zoos have scooters to rent; so, you can practice there before the trip. You don't have to do this if you are not comfortable with the idea, but it may help you more than it hurts you; so, it's worth considering.

As others have mentioned you probably qualify for a GAC (guest assistance card). Your brother should be able to help you write something up for guest services; so, you won't have to talk so much to get one. If you're brother can be with you on your first day, then he could help get you one. Once, you have one it's good for all the parks for the length of your stay. This gives you the opportunity to enjoy the parks with alternative queues at times; so, if crowds and such affect you you may be able to avoid such situations. It would be something you can show a CM if you get into trouble anywhere, too. With your own note cards and this tool the CM should take notice and help you in a bad situation.

For rest rooms at the parks there are family restrooms which are separated from the public restrooms a little and this might help you in those situations. They are bigger and they are a little more private. You may have to wait your turn for one, but it's another option if you need it. I would use restrooms at restaurants if they are not crowded, too. I would stick with doing quick service restaurants as much as possible.

Since you are driving you can bring some food with you. There are plently of breakfast items that you can have without ever going to the food court at the resort. Nuts are my favorite food item for the room; they have protein and they are very portable. I think I would avoid the resort food courts as much as possible; I think they are harder than doing the quick service restaurants at the parks. Maybe, think about getting a refrigerator (value resorts like All Stars and POP Century don't a refrigerator-you have to request and pay for one there) and stock up on other food items like fruit, vegetables, cheese, peanut butter, and bread for your room. If you are having a bad day then you can go back to your room and have enough to eat right there; so, you can get away from it all.

Be sure you understand how to get from the resort to the parks. In some cases you may take a bus and in other cases you may take a monorail. Be familiar with where you need to pick up the buses going back and forth. You have to be in the right area leaving the park to get back to your resort. There are many, many buses and you need to be at your sign for you to be in the correct spot.

I'll try to write more later, but this is part one.

 

[clanmcculloch]

I would strongly recommend that even though you can't build detailed touring plans, you still spend some time studying a touring plan service. Here's what it can do for you.

• Tells you which park will have the least number of people per day. This will help with crowds and line lengths and the general feeling of being surrounded by to many people.
• Tells you which time of day you should be at each attraction in order to avoid lines. You mention the feeling at Soarin' as an example. Well, using a good touring plan, we never wait long in that line for long. This is also important because it'll keep you out of busy parts of the park at the busiest times of day.
• Teaches you how to maximize fast passes to further reduce wait times.

You don't need to carry a touring plan for this to work. I do create detailed touring plans but we really only follow them for the first hour-ish each day. After that, I follow a chart that shows which attractions should be hit at each block of time in the day (ex. rope drop list of attractions, 1st hour list of attractions, filler anytime of day list of attractions, morning list of attractions, etc). It really makes a HUGE difference. I laminate my chart so it'll last through the whole trip.

A great site for this kind of things is easywdw. It's free and pretty easy to navigate and the forums are also really nice.

Alarms on your cell phone will be a huge help for anything that's time specific.

 

[krisnme]

My Son has a small light that attaches to the bill of his baseball cap, that way you can see without having your hands full. you should really get a GAC. my son has a small button he wears that says"person with autism" (most people know what autism is but not aspergers) and a card that explains issues he may have along with a contact # for a family member. you can find lots of these products online. There are apps for your ipad/iphone that can show the menu at all of the park restraunts and the hotels. If you are ever really overwhelmed, head to the first aid station and they can give you a safe place to regroup. my Son does not drive, but I have a sticker that says "person with autism, may not respond to verbal commands" you may want to consider something like this to warn law enforcement if you may become flustered by a traffic stop. I hope you have a magical trip, and come back and let us know how it went!

 

[Grace&Carolinesmom]

I think having cards with phrases like "Please help me to a quiet area" or "Please take me to the nearest First Aid station" would be quite helpful in case of overstimulation. I would also suggest wearing an Autism puzzle piece pin or button with Autism phrasing as that will alert CMs and many parkgoers of your need for understanding communication difficulties. You could also have a small Autism awareness puzzle piece symbol in the corner of each communication card. I would make several cards, have them laminated, then punch holes in them and thread thru a large key ring so that you can easily flip thru them and show the needed phrase to a CM.

Setting an alert on your phone about 20 minutes before lunch would be a great time for finding a quiet place to regroup. Once you feel more centered, you can look thru park menus(on smart phone or preprinted for that day's activities), choose your lunch(or dinner items), write everything down on a piece of paper. Include the Name of the eatery, whether you are dining plan or paying cash/credit/room charge, your drink and food items. Also make sure you write down choices like ketchup, mustard, etc. for items that they will ask "how you want it". Then go straight to the restaurant and give the cashier CM your order paper. This eliminates feelings of "being on the spot" to make a decision and you can concentrate on the physicalities of just "being there" so the noises and closeness of all the people aren't inhibiting your menu order. I hope that makes sense

Might also be a good idea to take an alarmed break for a snack in the morning and afternoon so that you can have YOUR lunch and dinner at off times from the masses to help with the crowd anxiety when your blood sugar is low.

My DD can sometimes relieve some stress anxiety by deep muscle pressure. This can be hard to accomplish on your own but you may be able to get a little relief by squeezing on a stress relief ball while standing in ride cues. It can help redirect your focus a little too.

Hope some of these suggestions will help.