Have you taken your child with autism to WDW?

[stellablue]

I work with children with autism and I am trying to convince a parent to plan a trip for her DS4 (w/autism) and DD9 (typical child).

They both love all things WDW-related and her DD has been begging to plan a trip there. The mom has taken them on vacations with other family members, their live-in nanny, and one of her DS's teaching assistants before (never to WDW), but she is concerned about her DS's sensory issues. She is also worried about stigmas or strange looks from people because of his self-stimulatory behavior and difficulties with communication.

Her DS is a very happy kid. He is nonverbal, but uses sign language and picture symbols for communication. He is fairly well-behaved and has specific tools in place to aid in behavior. He does engage in a high level of self-stimulatory behavior (vocal and movement).

**I wouldn't say that the self-stim is necessarily disruptive to others, meaning he's not any louder than any other kid his age, but his movements are not "typical" and language is often "jibberish."

As this child's teacher, I know how to prepare him for his trip and I think that he will do fine and have a great time....I've also suggested getting the GAC. But I was hoping to gather some info from you guys to pass along to her.

For those of you who have brought your child/loved one with ASD to WDW, I would love to hear your experiences on:

-Cooperation from CM with any accomodations you required during your trip

-The "kindness of strangers"-were other guests understanding if you needed to unexpectedly step out of line, polite enough to refrain from staring or dirty looks if your child had an issue or was behaving in an "unconventional" manner (regardless of if they were actually bothering anyone)

-Was it easy to exit an attraction last minute if you needed to?

-Was it easy to find quiet places to escape to if a parade or light show got to be too much?

Her biggest concern is drawing in negative attention from others. Angering other people, enduring staring or dirty looks, etc..

Please share what you can, so I can pass the info along to this mom.

TIA!

 

[disneynewman]

I say GO FOR IT!!!! My DS, 5 is ASD, PDD-NOS and this April will be his 5th trip. Each one gets better with our experience knowing what he will and will not tolerate. The only comment I can rememebr someone else sayine was in MGM, we were having lunch and DS took off running through the tables, and crossed pathes with some lady right as my FIL was about to catch him and she had some snide comment about 'watch out' or something and gave a nasty look. My DS stimming is all jumping and hand flapping, I never notices if it bothered other people...but who cares

As far as the CMs, getting the GAC is a must and they were all great. We know that Brian doesn't want to be anywhere dark so for example at test track we know that for just a few seconds during the pre-show it is totally dark so we explained our situation to the CM and she let us by pass that. Another day in the MK the park was not at all busy, BRian's favorite ride is Goofy's Barnstormer, because there was not line, people just walked up and got on, she let us stay on and ride over and over again w/o getting off (we rode 18 times )

We did have to exit teh Lion King show, he got very upset, I think it was too dark and a bit over stimmulationg for him, the CMs escorted us around the stands to the exit and we left without being noticed too much.

I think if they are prepared to go slow and not push things they will be fine. Lots of special needs kids go to Disney, anyone who gives them any grief is not worth worrying about.

I hope they go!

 

[Andyjo0930]

I have taken my son who has autism to disney twice. The first time, it was before I found these boards and I had no idea about the GAC card, and we had a few problems. The second time was this past August and we had a much better trip. I highly recommend getting the GAC card. Also, my son doesn't like loud noises if they right in front of him. We were able to watch the fireworks, but couldn't do it right in front of the castle. He was much better if we were farther up main street near the entrance of the park. The CM's are great, just let them know when you enter a ride that your child may have a problem with darkness or whatever. THey will be more than happy to help. Because my son doesn't wait well, we did either table service meals or buffetts, as sit down dinners don't go so well, because he has to wait for his food. My son actually likes all of the rides and we had went on youtube so that he was able to see the rides prior and he knew somewhat of what to expect. That worked out very well for us and he enjoyed going on the rides. On our first trip, he was in a stroller and had I known, I could have gotten a tag for the stroller to be used as a wheelchair for him and he could have stayed in their for a lot of attractions. If your child is in a stroller and he does well with it, you may want to look into doing so.
There are the occasional people who look at me like i'm the worse parent on the planet because my son is screaming or making noises, but for the most part, we have had really no major problems and are planning on taking him again.

 

[Christine43]

Hi, I've taken my twins ( 1 w/HFA & 1 w/AS) to Disney three times and we're going again in December. These have been HUGELY positive trips and have made the boys ecstatically happy. If the little boy doesn't like noises, can he tolerate childrens ear plugs? I know this has helped some families in the past. I explain each ride to the boys and it's up to them, of course, what they want to ride. If she could take another adult with her it would be a huge help so that if both children didn't want to do the same thing, they could split up. One could also sit with the little boy if he needed to rest or disengage.
As far as anybody staring, I don't let that ruin our trip. We were there in Oct. and my son had a hard time on a bus, stressing out, stimming, crying and we did get some looks. I usually quickly explain that he's autistic and this is a behavior he has when he's stressed out, I calm my son and anyone who still has a problem is just a jerk and not worth my time.
I hope she goes, she absolutely will not regret it.

 

[Disneylvr]

Would the live-in nanny and/or TA go on the Disney World trip as well. If yes, then no hesitation, they should go!!!! Any mom would love to have an extra pair of hands especially the mom of a child with autism. My DD with autism has had 2 vacations in WDW so far. She was still a baby on the first one so we don't count it but she was 3 years old on our last one. We got the GAC and explained to anyone who gave us a dirty or suprised look that she has autism.... I am not shy about spreading awareness about ASD hoping that the person won't be so quick to judge the next time a meltdown occurs in front of them. We are in the middle of planning our next Disney World adventure for April of this year. Autism is not going to keep up from doing the things every other family does!!!

 

[sukhakuli]

We've taken my ds, who has autism. We didn't get a GAC, and I'm not sure if we'll get it next time. Supposedly they do not help with the wait in lines or for special seating, and those would be his needs. He has no problem getting onto rides since we just pick him up and put him on them.

In general, WDW has actually helped him quite a bit. On our last trip, when we first got there he was afraid of everything new. He wouldn't go into any of the buildings or rides, and he spent a lot of time hiding under his blanket in the stroller. But by the end of the trip he was the first one in new places, he was seeking out characters, etc. The thing is, every social interaction was positive there. And that just doesn't happen in the real world, KWIM? So he started to look forward to new things and new people. After all, they were giving him stickers, food, and fun ride experiences. What's not to love?

As far as the guests at WDW go, it's pretty much the same thing as when you are in any public situation. I have gotten many strange looks from people. My son went through a phase where everytime he cried we had to hang him upside down for about 10 minutes. No one gets that kind of thing, KWIM? But, it was dh and I that noticed the looks, not my ds, so it doesn't matter. You have to get kind of a thick skin when it comes to these types of invisible disabilities. Some people carry cards to hand out when people start staring, or put shirts on their kid that say something like "1 in 160 kids has autism and I am one of them." We choose not to do these things, personally, but those decisions depend on your comfort level.

We are starting to prepare my son for the trip next year now. We are going to teach him to use headphones and sunglasses when he starts to get overstimulated. The headphones will cancel the noise, and the sunglasses will give him a chance to feel visually seperated from other people. He also still likes to hide under his banket, and the stroller is a good place to give him a cocoon to hide in. My son tends to be a sensory seeker, to DW is great for that, but he does have serious problems with strangers. You can't really tell people not to look at, talk to, or touch him, so I try to keep him as physically close to me as I can, and I will put my body in between his and a strangers, and this helps quite a bit.

I hope that helps.

 

[MsStinkerBelle]

GO FOR IT!!! My daughter has PDD with Noise-sensory issues and she LOVES going to WDW! We get the GAC each time we go and about 99.9% of the CMs are great with helping us out. I don't put DD on rides/attractions that agitate her but we wind up doing her favorite rides over and over. There are some characters she doesn't really care for and other characters she just loves. I just follow her lead and try not to do too much. Even at the child care clubs, when I told them about my DD's PDD, they just asked what they could do to accomodate her.

There was one attraction where DD got a little upset. She loves Finding Nemo and in December we finally got to see Finding Nemo: The Musical! at AK. While she loved the whole play, at the end of it she burst out into tears. Those of you who have gone know how 'touching' this play is but for a child with emotional issues it really hits hard with her. She kept crying about how the play was so 'beautiful'. We got some strange looks from guests but I didn't pay attention to that. We saw Nemo again the next day and she was perfectly fine. She even had me download the soundtrack off of iTunes. LOL!

I highly suggest the mother check out a copy of Passporter's Open Mouse . It has all kinds of invaluable tips for folks with all kinds of special needs--especially autism.

 

[coruth4]

I also say go for it. Never let other people hold you back from doing something. These children can not help their condition and they should not be prevented from doing everything all the other kids do because of people who don't understand.
Disney is great for ANYONE with disabilities. Those who stare or make an issue are generally people who will make a scene over every little thing. I am very proud of my son (high functioning autistic with sensory issues) and my daughter (mitochondrial disorder that prevents her from speaking + other issues). I have never had issues with anyone staring at them - but then again I don't think I would even acknowledge someone if they did.

I also have found that the magic of Disney has helped my son with reading (he reads everything to do with disney), sensory issues (he wants to try all the rides and works through his sensory problems himself) and dealing with other people and being able to express his needs/wants while on vacation.

Encourage her to go and I don't believ she will ever regret it. If anythign she may wonder why she waited so long! The Cast Members are helpful, supportive and udnerstanding with all the needs. Go for it!

 

[stellablue]

Wow thank you all for your replies!!

This is all such invaluable advice and I am going to copy and paste your replies to forward to this parent.

MsSTinkerbelle: Thank you for that book reference!

Sukhakuli: It's funny you mentioned the cards, I actually did get her set up with these-I have other students with families who carry these in the community and hand them out if situations arise that might cause concern from strangers. The cards actually work great and are great ways to spread awareness and decrease those ignorant looks.

DsneyLvr: Yes, the live-in nanny will definately be joining if they decide to go.

She is a very sweet mom and very timid. Constantly worrying about bothering or distracting other people. and she feels just aweful (rightfully so!) when rude strangers say things.

Anyways, I think they are all going to have a great time! These suggestions and experiences from you all will certainly help ease her nervousness about going.

Thanks again!

 

[SueM in MN]

MsSTinkerbelle: Thank you for that book reference!

I was one of the peer reviewers on the original version of that book in 2006. I do have one piece of advice. The book is big and can be very overwhelming looking at first glance. You might want to look at it first if possible to give her some guidance on where to start.
I'd suggest just paging/browsing thru it first to get an idea about how it is laid out, what information is in there. Then go thru and bookmark some pages. After re-reading those pages, you can mark or highlight the things you want to make sure to remember.

 

[Aggiegrl]

There is a great trip report on the reports board titled "Adventures in Autism" or the like. If you could weed through all the comments and just print off the actual report posts, it might be helpful for this family to read real life examples. I believe the posters son is older that your clients son, but it might help them get into the thinking of "we can really do this, they did."

 

[SueM in MN]

There is a great trip report on the reports board titled "Adventures in Autism" or the like. If you could weed through all the comments and just print off the actual report posts, it might be helpful for this family to read real life examples. I believe the posters son is older that your clients son, but it might help them get into the thinking of "we can really do this, they did."

there is a link to that trip report in the disABILITIES FAQs thread, along with some other links to past threads that might be helpful.

 

[Bugsmom73]

Go for it. DS is on the spectrum and we went when he was 3. He also went at 13mos but that is a different story.

 

[DizneyBoomer]

Our daughter is now sixteen years old and unfortunately, she cannot handle the noise, crowds or stimulation of any amusement park.

Years ago, when she was little, we were able to bring her to WDW and if a "meltdown" occurred, we could quickly and easily remove her from whatever set her off.

Now that she is older, the head-slapping, screaming, biting and tearing off her own clothes during a meltdown is not so easy to control. She is injurious to herself and to those around her when this happens.

At age 13, she also developed Epilepsy, which I'm told is not unusual in children with autism. Puberty seems to activate the seizures.

Our last trip with her was very challenging for us ( we do not have a "live-in" nanny ) and sheer hell for her. For my daughter, going into the parks with the crowds and noise was like being tossed into a snakepit. We finally had to admit that WDW was not for her.

There are all levels of autism and if your child loves WDW, then by all means, go for it. When my daughter was little, she rode Winnie the Pooh and It's A Small World over and over. She loved those rides and I cherish those memories.

Unfortunately, as she got older, her symptoms became more intense and our WDW trips with her have ended. When we do take trips with our family, she stays in a Respite Home with other autistic children. It's a very nice place, accepts only eight little "guests" at a time and is specifically set up to give families a chance to take a break and go on short vacations, knowing that their children are well cared for.

While there, she takes trips to McDonalds, goes to the park and feeds the ducks, helps to bake cookies, watches movies and plays on the swings in the backyard. All the quiet little things she enjoys in her world.

But WDW is no longer something she can handle. Still, it's such a hollow feeling to go on vacation to WDW and not take your child.

Autism robs all of us.

 

[brettgirl]

Go for it!!!! I took my DS (at the time the diagnosis was PDD-NOS, sensory integration issues, Anxiety State, Hypotnia) to disney at 5. We did do a test run at an amusement park, Hershey Park to see if he could wait in lines, handle all of the overwhelming stuff that goes along with it, etc. He passed the test.

The parent knows their own child so they should really know the rides before. I selected certain rides and entertainment based on my son and his issues. I also kept him in his stroller (I will do so again even if he is almost 7, he finds comfort in it and with his blanket).

A small flashlight helps with darkness.

So who cares what people think, just keep in mind if only they were in our shoes, they probably could not handle it.

We who live with autism and other issues know the smallest of kindnesses goes a long way and I bend over backwards to share that with others. I will be smiling in your direction! So what if my kid wants to organize shoes and open and close the laundry room door at the quiet pool instead of going in the pool.........it is what floats his boat!! It sure is better than the unattended children running amuk.

 

[chocovrdmicears]

We have taken my son (now 4 1/2) to Disney each year since he was 1. As a pp mentioned, for us it gets better every trip because we learn something new. My son thrives on the stimulation. However, we learned the hard way our last trip that we need to stay at a resort on the monorail because when he is done...he is DONE! We need to be able to get in and out of the parks quickly (or rent a car). Our vacation is 100% completely designed for our kids which has been the secret to our success. We never wake them up to try and be somewhere early, we leave when they are tired (we have yet to see any fireworks the past few years! )...And we always, always take a break during the day to Liam can have his much needed swim time.
Also, The GAC has been a saving grace for us. We could never do it without it.
This past trip some of the fabulous Disigners here came up with some great customized autism designs for us. I printed them out and made shirts for our family. NO, we do not care what others think about ours son's 'behavior'...we are LONG past that...it just helped avoid some 'looks' that we always seem to get. It doesn't bother my DH or I, but my kids are getting older and more aware of peoples responses and reactions. I know some people don't like the idea of it of shirts or cards..but we feel it is part of our responsibility to educate people on tolerance for folks who don't have a 'visible' dissability. It is my hope it will help pave the way for those with Autism in the future.
Here are some of the disigns..feel free to use them! Just right click to save onto your computer. HTH!

 

[KirstenB]

Our daughter is now sixteen years old and unfortunately, she cannot handle the noise, crowds or stimulation of any amusement park.

Years ago, when she was little, we were able to bring her to WDW and if a "meltdown" occurred, we could quickly and easily remove her from whatever set her off.

Now that she is older, the head-slapping, screaming, biting and tearing off her own clothes during a meltdown is not so easy to control. She is injurious to herself and to those around her when this happens.

At age 13, she also developed Epilepsy, which I'm told is not unusual in children with autism. Puberty seems to activate the seizures.

Our last trip with her was very challenging for us ( we do not have a "live-in" nanny ) and sheer hell for her. For my daughter, going into the parks with the crowds and noise was like being tossed into a snakepit. We finally had to admit that WDW was not for her.

There are all levels of autism and if your child loves WDW, then by all means, go for it. When my daughter was little, she rode Winnie the Pooh and It's A Small World over and over. She loved those rides and I cherish those memories.

Unfortunately, as she got older, her symptoms became more intense and our WDW trips with her have ended. When we do take trips with our family, she stays in a Respite Home with other autistic children. It's a very nice place, accepts only eight little "guests" at a time and is specifically set up to give families a chance to take a break and go on short vacations, knowing that their children are well cared for.

While there, she takes trips to McDonalds, goes to the park and feeds the ducks, helps to bake cookies, watches movies and plays on the swings in the backyard. All the quiet little things she enjoys in her world.

But WDW is no longer something she can handle. Still, it's such a hollow feeling to go on vacation to WDW and not take your child.

Autism robs all of us.

Our daughter with ASD is only 2 1/2. Thanks for sharing your experiences. I hadn't heard of Respite Homes, but it sounds like a great way for everyone in the family to meet their needs.

 

[disneynewman]

We have taken my son (now 4 1/2) to Disney each year since he was 1. As a pp mentioned, for us it gets better every trip because we learn something new. My son thrives on the stimulation. However, we learned the hard way our last trip that we need to stay at a resort on the monorail because when he is done...he is DONE! We need to be able to get in and out of the parks quickly (or rent a car). Our vacation is 100% completely designed for our kids which has been the secret to our success. We never wake them up to try and be somewhere early, we leave when they are tired (we have yet to see any fireworks the past few years! )...And we always, always take a break during the day to Liam can have his much needed swim time.
Also, The GAC has been a saving grace for us. We could never do it without it.
This past trip some of the fabulous Disigners here came up with some great customized autism designs for us. I printed them out and made shirts for our family. NO, we do not care what others think about ours son's 'behavior'...we are LONG past that...it just helped avoid some 'looks' that we always seem to get. It doesn't bother my DH or I, but my kids are getting older and more aware of peoples responses and reactions. I know some people don't like the idea of it of shirts or cards..but we feel it is part of our responsibility to educate people on tolerance for folks who don't have a 'visible' dissability. It is my hope it will help pave the way for those with Autism in the future.
Here are some of the disigns..feel free to use them! Just right click to save onto your computer. HTH!

These are AWESOME!!! Thanks for sharing! The stitch one makes me laugh. I'll be making shirts with these for sure

 

[chocovrdmicears]

For those of you who have brought your child/loved one with ASD to WDW, I would love to hear your experiences on:

-Cooperation from CM with any accomodations you required during your trip


-The "kindness of strangers"-were other guests understanding if you needed to unexpectedly step out of line, polite enough to refrain from staring or dirty looks if your child had an issue or was behaving in an "unconventional" manner (regardless of if they were actually bothering anyone)

-Was it easy to exit an attraction last minute if you needed to?

-Was it easy to find quiet places to escape to if a parade or light show got to be too much?

Her biggest concern is drawing in negative attention from others. Angering other people, enduring staring or dirty looks, etc..

Please share what you can, so I can pass the info along to this mom.

TIA!

I was rethinking my answer to you from earlier today..I wasn't sure I answered in the way that I should have..now that I have re-read your original post, I realized I missed some of your specific questions.

1. CM's were 100% outstanding, understanding and helpful 100% of the time.
2. I have had to leave several shows with my son (Monsters Laugh Floor, Muppets 3D & Philharmagic) It was very easy to leave, no problems at all, but I always make sure I am sitting at the end of a row or near the exit.
3. Easy place to escape to...would definately depend on what time of year they were there...clearly the summer, holidays, school vacations etc would be a bad time to go.. We always go in Sept and have never had a problem finding some quiet...My son has napped many times on the TTA ride in Tomorrowland! My son loves parades, but we have not yet done Fantastmic because I understand it can be pretty intense.

As far as other peoples reactions, looks, bothering them etc...I mention in my previous post...I couldn't care less. We have been living with autism for 3 years and the least of my concerns are other people being 'bothered' by my son! Now that being said, I will tell you that it took a while before I got to this place. There was a time when I cried in a restaurant because a couple asked the waitress to move them away from my family because my sons noises were bothering them . But anyway...Im all the times I have taken my son to Disney I only got 1 comment. We were using the GAC to take my son on Dumbo when a guy yelled to us from the line "I didn't know Dumbo had Fastpass" But truthfully that was the one and only time.
Maybe we have received 'looks' from people but to be honest I am so busy enjoying the vacation with my family, I don't notice!
Taking my son to Disney is one of the most exhausting and enjoyable experiences of my life. The first time my son let someone other than family touch him was at Disney. Here is a picture. My DH & I stood there crying and Chip sat on the floor and held my son for 10 minutes (sorry if you were behind us in line)

 

[disneyworldmom2]

I agree with others.... GO FOR IT, and forget about what others think or say! It's your vacation with your family, so go and enjoy!

There are many "quiet" places that you can go. If you can't find anyplace else, there's always the first aid station if you need it. The CM's are always very helpful and understanding.

As far as the parades go, if it becomes overwhelming, duck into a shop somewhere for some quiet. My son and I enjoyed the parade inside the Christmas Shop at MK while husband and daughter enjoyed it outside.

If the child gets scared in the dark, my suggestion would be glow bracelets. I always had one on, even in the daytime. If we went into an attraction that got dark, even just momentarily, my son knew right where I was. He would just grab my hand and play with the bracelet.
Good luck!