Autism accommodations?

[emtmom0104]

Ok, I've been dealing with this own my own for years as it has taken almost 5 years to finally have an autism diagnosis for my son who is 7. The last time we were at WDW it was horrible. He melted down a few times...one place didn't have chicken nuggets, another didn't have plain popcorn in a bag (then spent 25 mins running around looking for some) and he lost it in Japan over someone saying that he didn't say something nicely. We left in only 3 hours because he calmed down a bit and was over everything and was freaking out that he wanted to go home. He latches onto displays, screams, cries, throws things, hits, pinches, is like a bull in a china shop and rushes through people to get away...you name it. When he is done for the day we all stop, no matter how much of a good day it was prior, and we leave immediately. I had so many rude stares and comments while I was trying to calm him down last time it was ridiculous. I tried to find a little stand in a corner so I could let him scream it out. Is there any place I can take him when he has an overload to just let him calm down? Sometimes its a few mins sometimes a lot longer. I don't even know what to ask for when we go. He refuses to do much but the rides he wants first are the ones we must do first..no stopping, no passing go, you do them and satisfy him or we might as well pack it up. He cannot wait for anything, we can't do any rides that he doesn't go on or he gives the other parent a nightmare of a challenge while he is extremely impatiently waiting. Are there any accommodations for kids like this, or even adults? I'm not by any means a disney newbie but every time we go we have issues and it gets worse as he gets older. I'd like our next trip hopefully a much better one. TIA

 

[WantToGoNow]

There is the GAC right now that would help but the process is changing in early October (and we can't discuss it or the thread will be locked) but it does sound like you will have to wait the same amount of time for attractions but will not have to stand in the regular line.

 

[lovedonald]

My heart goes out to you emtmom! Does your son respond well to schedules? Maybe if he knows what is coming that would help. You can place all of the things you would do for that day on a schedule using pictures or words and have him mark them off as you go. You can look up the menus of the restaurants ahead of time and find out if they have the foods he will eat. He may have less anxiety knowing what his day will look like. You can even put a swim break on his schedule if he likes swimming. You can go over the schedules with him the night before and that way he will know when he is getting up and what to expect. There are a lot of places that you can go to in corners if he needs his space for a little while. We have special needs children in our family. God sent you your little boy for a reason. You are such a great mom finding a way to make his experience at disney a great one.

 

[Mrs.Malone]

Ok, I've been dealing with this own my own for years as it has taken almost 5 years to finally have an autism diagnosis for my son who is 7. The last time we were at WDW it was horrible. He melted down a few times...one place didn't have chicken nuggets, another didn't have plain popcorn in a bag (then spent 25 mins running around looking for some) and he lost it in Japan over someone saying that he didn't say something nicely. We left in only 3 hours because he calmed down a bit and was over everything and was freaking out that he wanted to go home. He latches onto displays, screams, cries, throws things, hits, pinches, is like a bull in a china shop and rushes through people to get away...you name it. When he is done for the day we all stop, no matter how much of a good day it was prior, and we leave immediately. I had so many rude stares and comments while I was trying to calm him down last time it was ridiculous. I tried to find a little stand in a corner so I could let him scream it out. Is there any place I can take him when he has an overload to just let him calm down? Sometimes its a few mins sometimes a lot longer. I don't even know what to ask for when we go. He refuses to do much but the rides he wants first are the ones we must do first..no stopping, no passing go, you do them and satisfy him or we might as well pack it up. He cannot wait for anything, we can't do any rides that he doesn't go on or he gives the other parent a nightmare of a challenge while he is extremely impatiently waiting. Are there any accommodations for kids like this, or even adults? I'm not by any means a disney newbie but every time we go we have issues and it gets worse as he gets older. I'd like our next trip hopefully a much better one. TIA

Not much advice to give, but

 

[KPeveler]

My biggest suggestion is to do a lot of advance research. You can find the menu for every restaurant and snack cart online ahead of time, so you can know everywhere that has the food he wants.

What are his biggest triggers? People touching him, loud noises, etc. Once you have the triggers, then you can plan the day better and avoid meltdowns.

There are quiet corners all over the parks, and I am sure others here will chime in with their favorite places. There is a First Aid station in every park, which is a quiet place to calm down. This may be an option for when you can tell he is starting to get overloaded. Once he is in full meltdown, not only will it be hard to get him there, but also it is a quiet place, and full on screaming could set off someone else... But it is a good place to go if you can tell he is getting overwhelmed and it may let you stop a meltdown before it starts.

The new DAS system is going into place in a couple weeks, so once we really know what is going on with that, we will be able to tell you more about how that might help you.

Will he sit in a stroller? You can rent a special needs stroller if he is too big for a regular one, and you can get a tag that will let you use the stroller as a wheelchair - this will give him his own space, where people are less likely to touch him.

Some kids do well with a touring plan - so he will know what to expect that day. Some people watch youtube videos online before going, so their kid will have a better idea of what to expect.

Finding a place for him post-meltdown can be hard, so figuring out his triggers and avoiding them can make your and his lives so much better.

 

[lanejudy]

Accommodations at WDW have always been based on "needs" and not a diagnosis. That said, the current Guest Assistant Card program is expected to undergo changes within the next month or so - and unfortunately none of us really know what those changes entail. I suggest that on your next trip, you make a stop at Guest Relations and discuss your son's "needs" as pertaining to the parks and see what they can offer.

However, based on what you have posted, the GAC would not have helped much anyway. GAC was/is only useful at attractions, and much of what you've described meltdowns occurring at restaurants or food carts, in a World Showcase country -- a GAC has no bearing on interactions at those places. As for rides, signs strongly point to NOT involving immediate access and the GAC was never intended to provided immediate access with short or no waits.

So, as others have mentioned, I suggest working out some social stories. Make or follow a touring plan (not strictly, but at least to be in the lower crowded parks and areas of each park throughout the day). Check out menus to see which restaurants offer the food(s) he most prefers. Bring something special that helps calm him -- be it an iPod, noise-canceling headphones, other electronic games or even simple stuff; make it a special treat that he gets to play with only in lines or while waiting at restaurants or for parades, etc. Plan mid-day breaks. And, as many of us do, be ready to throw it all to the wind and follow his lead if necessary -- if he's done for the day, you'll have to go with Plan B. I'm not sure how large your family is, but maybe you could split up and let the other kids have some time in the park while the parents alternate who brings your son back to the resort for one-on-one downtime. But trying to "read" his cues rather than push to his limits will help avoid the meltdowns even in the parks.

Again, you should stop by Guest Relations to discuss the situation, but I'd go with my own bag of tricks and plans without relying on WDW to provide it.

Enjoy your vacation!

 

[mom2AidanAndEli]

I really hope this isn't taken the wrong way, but maybe a Disney vacation is just not for him at this point.

I have an autistic brother who is now 41 years old, so I've been there, done that all my life. I'm certainly not of the opinion that anyone with these issues should be locked away and forgotten. But maybe the amount of stimulation, noise, crowds, lights, motions is just too much for him. Heck, I know plenty of perfectly able people who can't handle it!!!

It doesn't sound like the accommodations--GAC or whatever it is when you go--will really deal with a lot of the issues you've talked about. They may help with waiting in lines, but that's about it. They can't guarantee what food will be where, unless you study the menus. They can't control who says what in the park. They can't control the number of people in a store. They can't control noise levels or degree of stimulus.

One thing I've come to realize from living with my brother all these years is that what we think they should enjoy or what we think will be fun or "normal" isn't necessarily what is right for them.

Example... My brother now lives in a group home about 45 minutes away from me. I visit, take him places, and he comes to my house from time to time. On Christmas he wants to come over in the morning and open his presents. Within a couple hours, he's pacing back and forth, making his guttural/soothing noises, covering his ears, jumping around. Basically, he's stressed out. He just wants to take his gifts and go home (which to him now is his group home). I used to feel horribly guilty that he wasn't staying for the whole day, enjoying dinner with us, etc. But then I had to step back and see that what I thought should be his reality just isn't. I see a family sitting down around a table sharing a holiday meal. He sees a somewhat unfamiliar setting, food he doesn't really like, and is missing his "stuff". To him, he's much happier once he's back home, in his room, with his things, enjoying his new gifts, eating the food he wants, watching what he wants on TV, controlling the amount of stimulus, etc.

Many people would say, "oh, poor thing, sitting at home by himself." What I've come to realize is that's what makes him happy! And even if it makes me feel bad, I have to respect his wishes.

This is just a long way of saying what you, as a wonderful mom, see as giving him the trip of a lifetime to Disney may just not be what's best for him or what actually makes him happiest. I'm not saying he needs to home by himself in his room. But I am thinking maybe you need to look at the type of vacation that might work better for him.

I hope that makes some sense and doesn't offend. As I said, I know what it's like and feel for you.

 

[RejoyceoverDisney]

Posting from my personal experience with my son, and from what other parents with ASD children have said.

We tried, and the experience in the end wasn't worth it for him or us.
As parents it's heartbreaking to not be able to do the "Family" time we had once dreamed we would have or hear other families get to do. My DS is now 21.
I've had to learn to listen to him in his verbal and nonverbal moments. And make decisions that sometimes are not what I want.

As great as Disney has tried to be with the special passes, and as great as you can be with research and menus, life is just unpredictable and weighing out the safety issues of your son and the people around him.......isn't an easy decision.

I'm not one in the crowd that believes my son needs to be included in everything. IF he had his way life would totally revolve around his needs. But as I've tried to explain to him, I (and others) have different needs and as much as I want to meet his, I have to meet mine too.

My first response to any new situation is that I try it with all accommodations possible. Sometimes there is a second time to work out the unpredictable I didn't know to prepare for the first time. But in the end I have to keep in mind what is best for the big picture. (renting out the park for just my son is not an option and with my luck there would be a power outage anyway.)

I am lucky. My son does not express desire to go to Disney World. He recognizes that there is too much sensory issues that made both his trips not 100% successful. Was the entire trip bad? NO but over all the big picture has us going without him for an adult/parents only trip.

I think I read the original poster said her son is 7. Here is my message of HOPE for her. He's only 7. You have a lot more therapy and time to get through and with hard work and dedication, plus his own rising to the occasion, to bring him another time.

If this next trip is a must in your family plans, I would totally limit the days with very flexible short plans of success. What can he do successfully?

I feel like I have not given any advise but that's good because I don't know you or your child and the details of all his needs. What I hope I did give is some encouragement that you are a good parent for wanting him to be able to enjoy the vacation, but please try to remember you are not "Super Mom".
Sometimes Autism does win.

Good luck in your decisions and being able to make/get accommodations.

EDIT: And not only changing the age I said, but one more piece........Don't make the mistake I did and force situation that won't be successful for him because from my experience, now my son won't retry because he expects it to be a bad experience again. Weigh things carefully. Just my experience.

 

[RejoyceoverDisney]

I really hope this isn't taken the wrong way, but maybe a Disney vacation is just not for him at this point.

I have an autistic brother who is now 41 years old, so I've been there, done that all my life. I'm certainly not of the opinion that anyone with these issues should be locked away and forgotten. But maybe the amount of stimulation, noise, crowds, lights, motions is just too much for him. Heck, I know plenty of perfectly able people who can't handle it!!!

It doesn't sound like the accommodations--GAC or whatever it is when you go--will really deal with a lot of the issues you've talked about. They may help with waiting in lines, but that's about it. They can't guarantee what food will be where, unless you study the menus. They can't control who says what in the park. They can't control the number of people in a store. They can't control noise levels or degree of stimulus.

One thing I've come to realize from living with my brother all these years is that what we think they should enjoy or what we think will be fun or "normal" isn't necessarily what is right for them.

Example... My brother now lives in a group home about 45 minutes away from me. I visit, take him places, and he comes to my house from time to time. On Christmas he wants to come over in the morning and open his presents. Within a couple hours, he's pacing back and forth, making his guttural/soothing noises, covering his ears, jumping around. Basically, he's stressed out. He just wants to take his gifts and go home (which to him now is his group home). I used to feel horribly guilty that he wasn't staying for the whole day, enjoying dinner with us, etc. But then I had to step back and see that what I thought should be his reality just isn't. I see a family sitting down around a table sharing a holiday meal. He sees a somewhat unfamiliar setting, food he doesn't really like, and is missing his "stuff". To him, he's much happier once he's back home, in his room, with his things, enjoying his new gifts, eating the food he wants, watching what he wants on TV, controlling the amount of stimulus, etc.

Many people would say, "oh, poor thing, sitting at home by himself." What I've come to realize is that's what makes him happy! And even if it makes me feel bad, I have to respect his wishes.

This is just a long way of saying what you, as a wonderful mom, see as giving him the trip of a lifetime to Disney may just not be what's best for him or what actually makes him happiest. I'm not saying he needs to home by himself in his room. But I am thinking maybe you need to look at the type of vacation that might work better for him.

I hope that makes some sense and doesn't offend. As I said, I know what it's like and feel for you.

Just wanted to say thank you for posting this.
The "Poor thing" comment is what I hear all the time.
My saying is "When 'Baby' isn't happy, no one will be happy."
So glad to hear you are a good sister and help him to do what he can and accept the parts he can't.

I was about to start a long post of examples but I'll quit there.
You know and live it. Thanks for sharing your story. I totally understand your example.

 

[thummyt]

The one thing that worked for me and my son is to rent a stroller. I had an immediate place for him away from the crowd. When he had too much stimulus, he would pull down his beach towel (to shade himself from the world) and re-regulate himself. It was the best $80 I ever spent on vacation. I pre-planned restaurants and kept our snacks that he liked because I was proactive in thinking through what he may want or need and didn't rely on the trying to find his favorites in the parks. I also wasn't afraid to leave when he'd had enough and took ample breaks for all of us. Good luck! If you need social stories or ideas for please inbox me!

 

[Minuet888]

As a mother with an 8 year old autistic son I understand. When mine melts down it's the same thing. He doesn't melt down as frequently now but used to.
What helped him is we had this little stop sign like hand held sign that said change on it and everytime there was a change we held up the sig and used an incentive or reward system with him it worked really well.
It might help for those times when a place doesn't have chicken nuggets (that used to be a dealbreaker for mine too I understand)

 

[bookwormde]

Preparing and being very flexible in what you do is key. WDW is actually a great opportunity to be fully focused on your child, and study the precursors to melt downs. Anxiety is always #1 for our kids followed by sensory issues, so studying and managing those can have a huge impact.

Of course it is important to be considerate, but do not worry about others reactions that are borne out of ignorance

 

[seashoreCM]

In order that Disney or any one of us can make suggestions to improve your experience, can you write a detailed narrative in English, of more than 300 words, describing what things you would like to see/find that are not already there? Include a hypothetical walk through a small portion of a park describing things you see that you don't like and things you don't see that you would like.

I know a place where you can go. I know a place where the lights are low. You're going to love this place I know.

Would quiet alcoves not too far out of the way help out? If you run into a meltdown you could take your child there. (Psst! Up on the lawn several feet from the walkway qualifies in my mind)

Would the ability to defer (privilege of deferring, if you insist) a scheduled activity or experience help out? So if you run into a meltdown en route to something then you could go to a quiet alcove and when your child quiets down, continue on to experience the attraction or meal or whatever?

A stroller with a sunshade on which you have made up a pulldown curtain is an excellent idea. (By the way, every child should be shielded from the sun.)

Note that being able to take off your parent hat so you can put on your park guest hat is not something that Disney can be expected to help out with. You might want to schedule a completely separate adults only vacation at a later date for yourself.

... rude stares and comments ...

A survey (not on Family Feud) was conducted a few months ago and one of the top five obnoxious sounds was a baby's crying.

 

[kirstenb1]

Our dd is 8. Now she can enjoy places like WDW, but it has taken many years.

We always brought her stroller.

Asked her teacher to help us come up with "social stories" to fit things like encountering characters, waiting in lines etc.

DH and I each took one kid. I almost always took Zoe, and we'd go back to the room after an early lunch, say around 11. We always ate very early to avoid crowds.

We have season passes to Busch Gardens and Water Country back home here. We have taken both kids there for many years. I think it has increased Zoe's ability to tolerate crowds and noise.

Because we're DVCr's, we're kind of "handcuffed" to WDW or Vero, or Hilton Head. We always try to take a trip to the beach sometime during the year. It is so much more peaceful. WE go during the off season, even just a weekend.

Several years ago, I was completely ready to give up on WDW (if it weren't for our older dd, I would have. ) Instead, I accepted that 2 hrs might be our limit in a park. Because you just never know if a ride will be shut down, etc, I asked Zoe what her top 5 rides were. I explained we might not ride them all, but we'd ride at least one.

She's very happy back at the resort, playing Legos, or going to the pool. That is fine, and what we do sometimes.

Finally, if it's not too crowded, she likes water parks better than WDW. So we go to Aquatica, and we all have a blast there.

 

[DannysMom]

Because we're DVCr's, we're kind of "handcuffed" to WDW or Vero, or Hilton Head. We always try to take a trip to the beach sometime during the year. It is so much more peaceful. WE go during the off season, even just a weekend. Several years ago, I was completely ready to give up on WDW (if it weren't for our older dd, I would have. )

Total non-sequitur, but Kirsten, if you. Find that DVC/WDW no longer suit your family & vacation habits, the resale market for DVC is very strong, with excellent prices for sellers lately. Just something to keep in mind.

Sent from my iPad using DISBoards App, please excuse any typos or autocorrects!

 

[samnbilly]

Hi!
Great plans are well thought out in advance, so hopefully this can be a better experience for all of you!!
One suggestion about his favorite rides.. If you're staying in Disney, maybe the FP+ could help you in addition to the new disabilities rules they're coming out with, you could also get another FP in the process? Obviously keeping him calm & not in a long line with lots of ppl.
I find that going at RD & getting the rides out of the way that they like best is helpful & taking a break at lunchtime.
Also, going when the park isn't particularly crowded-obviously certain months are best for crowds.
Definitely agree with the stroller & something maybe he loves from home to make him calm & comfortable!
Best of Luck!!
{{{HUGS}}}

 

[kirstenb1]

Thanks Danny's Mom. At the risk of starting a WDW riot, I'd sell it immediately. However, our older dd and my dh would mutiny. They have a great time there.

Our younger dd has fun too, but her favorite type of fun is more low key, like splashing in a pool, or playing with her Legos. Although we've owned at OKW for 20 yrs, I can usually score AKL at the 7 mth window. Zoe loves watching the animals, and doing some of the low key resort activities.

 

[dbprimeaux]

We have an 11 yr old DS that has Autism. We love WDW!! PLAN, PLAN, & more PLANNING... We have been visiting WDW since DS was about 4 yrs old. He does not do well in crowded areas. Decisions are very difficult for him, so I make all major decisions before leaving home and we stick to those plans, such as, meals, breaks. We always visit Guest Services for the right type of a accommodations for him and the rest of the family (DH, DS 20, & DD 9). We are DVC owners at Saratoga Springs Resort. This is great for us!

First, we eat breakfast in the room, I have breakfast prepared before the kids are awake...no decision to be made -meltdown avoided. I bring snacks that everyone is accustomed too... No major diet change with artificial flavors, colors, etc... We stay in the park for about 3-4 hours then head back to the room for a swim and pool activities. Back to room for a afternoon snack, showers and a nap... Then back to the park(s) or another resort for dinner - again preplanned dinner reservation - meltdown avoided. If viewing firework show(s), we try to see them from one of the nearby resorts or during dinner... DS doesn't like loud noises. And, I can't stress enough... Take lots of breaks away from the parks. Also, we have discovered many quiet spots in the parks. Please msg me if you would like to know more of our "secrets."

 

[2Pirates2Princesses]

My biggest suggestion is to do a lot of advance research. You can find the menu for every restaurant and snack cart online ahead of time, so you can know everywhere that has the food he wants.

What are his biggest triggers? People touching him, loud noises, etc. Once you have the triggers, then you can plan the day better and avoid meltdowns.

There are quiet corners all over the parks, and I am sure others here will chime in with their favorite places. There is a First Aid station in every park, which is a quiet place to calm down. This may be an option for when you can tell he is starting to get overloaded. Once he is in full meltdown, not only will it be hard to get him there, but also it is a quiet place, and full on screaming could set off someone else... But it is a good place to go if you can tell he is getting overwhelmed and it may let you stop a meltdown before it starts.

The new DAS system is going into place in a couple weeks, so once we really know what is going on with that, we will be able to tell you more about how that might help you.

Will he sit in a stroller? You can rent a special needs stroller if he is too big for a regular one, and you can get a tag that will let you use the stroller as a wheelchair - this will give him his own space, where people are less likely to touch him.

Some kids do well with a touring plan - so he will know what to expect that day. Some people watch youtube videos online before going, so their kid will have a better idea of what to expect.Finding a place for him post-meltdown can be hard, so figuring out his triggers and avoiding them can make your and his lives so much better.

I really hope this isn't taken the wrong way, but maybe a Disney vacation is just not for him at this point.

I have an autistic brother who is now 41 years old, so I've been there, done that all my life. I'm certainly not of the opinion that anyone with these issues should be locked away and forgotten. But maybe the amount of stimulation, noise, crowds, lights, motions is just too much for him. Heck, I know plenty of perfectly able people who can't handle it!!!

It doesn't sound like the accommodations--GAC or whatever it is when you go--will really deal with a lot of the issues you've talked about. They may help with waiting in lines, but that's about it. They can't guarantee what food will be where, unless you study the menus. They can't control who says what in the park. They can't control the number of people in a store. They can't control noise levels or degree of stimulus.

One thing I've come to realize from living with my brother all these years is that what we think they should enjoy or what we think will be fun or "normal" isn't necessarily what is right for them.

Example... My brother now lives in a group home about 45 minutes away from me. I visit, take him places, and he comes to my house from time to time. On Christmas he wants to come over in the morning and open his presents. Within a couple hours, he's pacing back and forth, making his guttural/soothing noises, covering his ears, jumping around. Basically, he's stressed out. He just wants to take his gifts and go home (which to him now is his group home). I used to feel horribly guilty that he wasn't staying for the whole day, enjoying dinner with us, etc. But then I had to step back and see that what I thought should be his reality just isn't. I see a family sitting down around a table sharing a holiday meal. He sees a somewhat unfamiliar setting, food he doesn't really like, and is missing his "stuff". To him, he's much happier once he's back home, in his room, with his things, enjoying his new gifts, eating the food he wants, watching what he wants on TV, controlling the amount of stimulus, etc.

Many people would say, "oh, poor thing, sitting at home by himself." What I've come to realize is that's what makes him happy! And even if it makes me feel bad, I have to respect his wishes.

This is just a long way of saying what you, as a wonderful mom, see as giving him the trip of a lifetime to Disney may just not be what's best for him or what actually makes him happiest. I'm not saying he needs to home by himself in his room. But I am thinking maybe you need to look at the type of vacation that might work better for him.

I hope that makes some sense and doesn't offend. As I said, I know what it's like and feel for you.

As a mother of a child who has autism, I just want to say that these are both well said posts and I agree with the suggestions and insight provided. At this point in my family's life, we have learned that research, planning, and foremost having a strong sense of practicality is what will make endeavors such as a family outing to the zoo or a Disney vacation a success. We are mindful of the fact that there are only so many accommodations that establishments can provide our child; and we also don't expect to be accommodated but appreciate compassion and understanding from others during those difficult moments we face at times. We know (and I am sure other families with special needs children know) that we have to be our child's primary support in ensuring that his needs are met and that he can have a happy, triumphant day by doing our share of planning ahead of time and having practical expecations before we place him or our family in a situation that could end up disastrous. OP, I wish you and your son the best as I truly understand what you are going through