Asperger's Anyone?

[greenjellybean]

My 11 year old daughter, Savannah, is going to be tested for Asperger's soon. Her therapist is the specialist that noticed that she may have Asperger's and plans to test her soon. I'm somewhat familiar with it, as I have a cousin who's precious son has been diagnosed with it. But since we only see them once a year, my experience is limited.

I'm looking for anyway that has experience with Asperger's, especially in regards to how it might affect your WDW trip.

My younger daughter, Sophie, is a MAW recipient and her wish is to go to WDW. While it hasn't been officially confirmed, I'm fairly confident she will get her wish. I have a thread regarding our journey in pretrip reports (probably not the right place for that)

http://www.disboards.com/showthread.php?p=51552121&posted=1#post51552121

TIA for any advice or help!!

 

[wdw4rfam]

I have a son with aspergers, and we've gone to Disney every year since he was born. We have always used GAC, now replaced with DAS. It provides us with a return time equal to the stand-by wait, we then don't have to stand surrounded by people, but can find a less crowded place to wait, then come back and use fast pass line. We drive to the parks instead of buses, since they seem to stress him. We do run into an issue with large holding areas like in Muppet 3d, voyage of little mermaid, monsters inc laugh floor, etc. We just explain to the cm and they usually let us stay in the back so he isn't compacted into the crowd. We also stand in back of playhouse Disney live.

 

[OurBigTrip]

I would PM bookwormde...I believe his son has Aspergers, and they've made many trips to Disney.

 

[WheeledTraveler]

Since you'll be there for a Wish Trip for your other daughter, you probably won't have to worry about DAS (even if either child's needs would benefit from a DAS). MAW passes work differently and generally supersede the need to get a DAS. If Savannah wants to go on rides separately from Sophia, the MAW pass won't be useable for those rides. You would have to decide if Savannah does need the accommodations given with the DAS and if it's worth going through the process to get one (which is usually quick, but if the line at GS is long, can take quite a while).

I don't have Asperger's, but have a whole bunch of the common traits (mine don't express as strongly and don't include some of the bigger diagnostic criteria). I also have quite a few friends with Asperger's and have been to WDW with at least one. What's going to be most helpful is to figure out your daughter's triggers for meltdowns/shutdowns and how to avoid them if at all possible. You may be doing this already without thinking about it. If loud sounds are a problem, it's worth looking into earplugs or one of the various types of headphones that blocks noise. If it's being crowded, look at the resources about when each park/section of park is probably going to be least crowded. If you can manage to have the trip at a time of year that isn't very busy, it will probably be easier/less stressful (that goes for everyone, regardless of disability-status). I know that's not always possible to control with MAW.

Keeping to a schedule pretty close to what her schedule is at home will also help. While rope drop is one of the best times to get in quite a few rides, if she's used to sleeping too late to make it, then don't push to make rope drop. Trying to eat at "off" times is also helpful, but if she's used to lunch at noon, try to time it so that she's getting her food as close to that time as you can (which probably means getting to where you're eating before noon). Make sure she's drinking enough liquid, especially water. Hunger and thirst can make anyone cranky and if she's dealing with a trigger, it will compound the problem (or may be a trigger in and of itself).

It's worth asking in the Wish Trip thread at the top of this board if anyone knows how FP+ works with Wish Trips. I haven't seen a report about using FP+ on a Wish Trip, but that doesn't mean there hasn't been one I've missed. If it is possible and worth it to use FP+ then you can use that to schedule when you'll be riding specific rides. I just really don't know if there is something about Wish Trips that means FP+ isn't worth it.

Along with OurBigTrip's suggestion of PMing bookwormde (both he and his son have Asperger's), clanmcculloch's older daughter has Asperger's (and I think clanmcculoch has said she may have it herself, but I'm not possitive) so PMing her may also be helpful.

I hope, whenever it happens, that you have a wonderful trip!

 

[bookwormde]

Hi,

Are kids are all so different so a little info on how her characteristics present would be helpful, but in general:

Sounds like you will likely be taking a slower pace so that is one key.

Try not to let her get overtired or overstressed.

If sensory differences are an issue then plan accordingly since they will raise anxiety quicker than anything else.

If transitions are an issue try to give lots of warning and be prepared to be flexible.

If you daughter may want to do things different from her sibling then if there is an issue with waiting in line use fast pass and DAS to manage that.

Mostly it is about focusing on quality not quantity

We have gone with our son for many years and since he is now 14 he can self evocate quite effectively (and we listen) so that is 90% of the issue.

Normally I would suggest staying on site, preferably at a deluxe depending on how the MAW is set up that may not be possible.

We are DVC members so when we stay we have a full kitchen and a living room so his limited diets and needing quite areas are easy.

 

[jenineh]

Kids with Asperger's are different in soooo many ways. My son has Asperger's and we have now been twice to Disney. Once when he was 9 and just last week. He is now 15. He had no issues at all. He even got sick and was miserable for 2 of the days we were there. We have never kept his diagnosis from him and he has worked really hard since he was diagnosed at age 8 to be as close to neurotypical as possible. He realizes when he is having an aspie moment and uses his coping skills when he needs them.We have never used a DAS card. He has learned to wait like everyone else. This trip he even pushed me to do rides with him that I never thought he would do. With that being said there are kids with Asperger's that would definitely need a DAS. It's all depending on what each child's needs are. The best thing any parent can do for a child like mine is get them help from a behavioral specialist as soon as possible. It was the best thing I ever did for my son.

 

[greenjellybean]

I'm floored at how fast and helpful everyone's advice and suggestions are when my original post has very little info in it (I went back and read it and I'm embarrassed it was so incomplete considering I'm asking for advise).

I've suspected that there was something else going on with Savannah but could never really put my finger on it. Her therapist says that should Savannah prove to have Asperger's, she would be considered high functioning Asperger's with ADHD. I think I didn't think it could be Asperger's because she is high functioning and my experience is so limited.

Food textures and tastes are a big issue for her and always has been. Noises are another issue. We did go to WDW with the girls once before and made to sure to always have ear plugs. In fact, in her 1st grade year, her teacher became very impatient with her because a required internet program had a noise in it that set Savannah off and she finally refused to do the program. I had Savannah's hearing checked because I KNEW noises were an issue and her behavior was not intentionally disrespectful, but the test came back clear of any issues. Never occurred to me to test her for anything on the autism spectrum.

Routine is important. She can go outside of her routine now, but was very challenging if we changed anything at a younger age. Surprises are very anxiety provoking. She is going to Camp Kemo with her sister next week and I'm doing everything I can think of now to prepare her for what she might expect.

She is also very obsessive. Her interest may change, eventually, but once she tacks onto a subject, that's where she is until she finally exhausts herself on it. Right now, it's a book series called Warriors about cats. Oh, and Mine Craft and videos on YouTube about Mine Craft

So that's what her conversations revolve around and those are often one sided, although I'm starting to see a change in that regard. I've been working on her conversations skills for a long time. Still have a long way to go, but I'm seeing some improvement.

However, Savannah is very intuitive and while she demonstrates issues with communicating with adults, she usually does fine conversing with other children, which I understand is not typical of Asperger's? She makes eye contact and understands social cues (usually).

I'm noticing from the responses here, that Asperger's apparently varies greatly per individuals within certain parameters. Since crowds are not as much of an issue as other things, I'm thinking she will be fine waiting in lines so the DAS card shouldn't be necessary. At least it's never proven an issue in the past so there's no reason it should be now.

Looking back at this list, I feel so foolish for having never put two and two together. I feel like I should have known. She's eleven years old and she's just now being tested.

 

[scdak]

Greenjellybean - don't beat yourself up about your daughter not being tested yet, I am willing to bet that there are many people that weren't diagnosed any earlier, and many, many more that have never been diagnosed at all. I hope her tests give you an answer and also some idea of how to cope with any problems she is having.

 

[greenjellybean]

Greenjellybean - don't beat yourself up about your daughter not being tested yet, I am willing to bet that there are many people that weren't diagnosed any earlier, and many, many more that have never been diagnosed at all. I hope her tests give you an answer and also some idea of how to cope with any problems she is having.

Thanks scdak. Her therapist suggested that should Savannah not have Asperger's, testing her will pinpoint areas of interest and that will provide us with a plan of action for behavior modification. She's an awesome kid and like any parent, want to give her every advantage I can.

 

[ZenDaisy]

I have Asperger's, and two of my kids have it as well. We love Disney! My daughter is a touch obsessed with it, but hey, it's an obsession I can get behind. For us, the biggest issues at home actually turn into pluses at the parks. They keep very early hours - but that just means that we can make it to rope drop! My son also has ADHD, but it just gives him more energy to keep going at the parks. I have some food allergy related things, but the Disney chefs are awesome at working with us. I don't know, I think we all might enjoy it just a bit more than average because we all notice a lot of details - and Disney is full of them, from Hidden Mickeys to the detailing in the store windows, to... everything! And they definitely have that innocence going on. My son's starting to lose it a little, but my daughter (6.5) still believes that the characters are real. WDW is our favorite vacation spot - OK, our ONLY vacation spot. We feel very welcome there.

 

[bookwormde]

Girls are just now starting to be diagnosed more broadly so you have done good to find your way to it at all. After all the diagnostic standard was written around boys presentations.
Sounds like you daughter has developed some strong self adaptive skill, I always caution though that practicing these skills still takes a lot of extra work and can be draining.
If not suffering from damaging anxiety our kids are not really "compulsive" they just have very strong areas of interest and hyper focus on those areas till they know "everything" These characteristics along with their exceptional non linear processing and non discriminatory nature are some of the greatest gifts that come along with the genetics, and are often their path to fulfilling employment.
I would monitor any sensory challenges in line to make sure they do not generate unmanageable anxiety.
You might want to consider a auditory processing evaluation (which is not a hearing test) since if there are differentials then combined with the a non linear processing nature need somewhat different support than typical attention issues.
I have to laugh, my son (15) is an avid series and technical reader and warriors is one of his favorites, as well as being a very picky eater (a vegetarian for moral reasons that does not eat vegetables) so I know where you are coming from there
Disneyworld is a magical place for our kids if done at a reasonable pace.
Just remember your daughter has some amazing gifts and will probably do her part to change the world for the better

 

[DisGirl819]

My six year old DD has aspergers and ADHD. We've been about seven times and she does fairly well. She is currently in therapy for social skills and to work on things like sensory overload meltdowns. We try to limit her exposure to triggers in the parks, limit our time in lines and limit park time. For a seven day trip we will go to parks 3-4 days and spend the rest as down time. Plan down time in for her. It can be done and it is managable just different.

 

[cnktruitt]

Hello! I have 2 sons, 13 and 22 who also have aspergers as well as a 12 year old daughter. My younger son doesn't notice the crowds and he wants to stay as long as possible. That is what he wants... but what we learned is that he needs to return to the resort after about 8 park hours. DS may not consciously realize how hard he is working to adapt to the noise levels and activity but his body does. He is usually exhausted by the end of the day. Leaving early works out well for us as we can decompress at the pool and have a quiet meal to round out the day. Granted we do lose some park time.... but overall we are a happy and contented bunch.

I hope you and your family have a magical trip.

 

[greenjellybean]

I have Asperger's, and two of my kids have it as well. We love Disney! My daughter is a touch obsessed with it, but hey, it's an obsession I can get behind. For us, the biggest issues at home actually turn into pluses at the parks. They keep very early hours - but that just means that we can make it to rope drop! My son also has ADHD, but it just gives him more energy to keep going at the parks. I have some food allergy related things, but the Disney chefs are awesome at working with us. I don't know, I think we all might enjoy it just a bit more than average because we all notice a lot of details - and Disney is full of them, from Hidden Mickeys to the detailing in the store windows, to... everything! And they definitely have that innocence going on. My son's starting to lose it a little, but my daughter (6.5) still believes that the characters are real. WDW is our favorite vacation spot - OK, our ONLY vacation spot. We feel very welcome there.

I'm finding out there are allot of people with Asperger's! Disney obsession I could totally get behind!! I LOVE the approach you take (I imagine which might be natural for you) to look at the positive attributes and traits rather than the more challenging issues Asperger's and ADHD might cause. I wish my babies still 'believed'. Sophie is my youngest at 8 and still wants to meet the characters but I'm saddened bc she's already 'explained' to me that those people aren't REALLY princesses. I'm REALLY hoping one of the face characters has a response to this!!

 

[greenjellybean]

Girls are just now starting to be diagnosed more broadly so you have done good to find your way to it at all. After all the diagnostic standard was written around boys presentations.
Sounds like you daughter has developed some strong self adaptive skill, I always caution though that practicing these skills still takes a lot of extra work and can be draining.
If not suffering from damaging anxiety our kids are not really "compulsive" they just have very strong areas of interest and hyper focus on those areas till they know "everything" These characteristics along with their exceptional non linear processing and non discriminatory nature are some of the greatest gifts that come along with the genetics, and are often their path to fulfilling employment.
I would monitor any sensory challenges in line to make sure they do not generate unmanageable anxiety.
You might want to consider a auditory processing evaluation (which is not a hearing test) since if there are differentials then combined with the a non linear processing nature need somewhat different support than typical attention issues.
I have to laugh, my son (15) is an avid series and technical reader and warriors is one of his favorites, as well as being a very picky eater (a vegetarian for moral reasons that does not eat vegetables) so I know where you are coming from there
Disneyworld is a magical place for our kids if done at a reasonable pace.
Just remember your daughter has some amazing gifts and will probably do her part to change the world for the better

Wow, bookwormde, I am thoroughly impressed. You are obviously VERY knowledgeable on the subject of Asperger's and suspect it all comes from necessity, but if I didn't know better, I would say you work professionally with Asperger's children as well. You've have provided a wealth of information and encouragement all at the same time! What you say regarding compulsiveness does make sense, which in turn makes me question. Does Savannah have ADHD? Has she been misdiagnosed this whole time? Has all of these symptoms been a result of Asperger's? As far as I'm concerned, testing cannot be done soon enough. Both of my girls are away at Camp Kemo this week, so any further work with her counselor will have to be done next week. But I'm anxious to get started and get some more concrete answers.

I'm definitely going to mention the auditory processing evaluation to her counselor or pediatrician so we can get that set up. I was furious when her first grade teacher lost her patience with Savannah after we told her she had issues with the online program due to the noise. I felt like no one believed me and I'm sure Savannah felt the same way. Obviously, the hearing test came back fine which supported we were just complainers.

I told Savannah about your son and she just grinned and said, well, naturally. Only the best and coolest people read Warriors.... then she hissed at me. Ah. Bless her. I could do without the hissing. But I ADORE that she loves to read and have no problem encouraging it.

I'm impressed that your son sticks with such a stringent moral code. Did you try to introduce new foods? I do, but gently. The general rule is take one bite. Now, that doesn't usually matter (as you can imagine) but as she gets older I'm finally starting to see that pay off and she's starting to branch out a little. No so much for the veggies (well, outside of corn on the cob) ... but let's not shoot for the moon here.

My six year old DD has aspergers and ADHD. We've been about seven times and she does fairly well. She is currently in therapy for social skills and to work on things like sensory overload meltdowns. We try to limit her exposure to triggers in the parks, limit our time in lines and limit park time. For a seven day trip we will go to parks 3-4 days and spend the rest as down time. Plan down time in for her. It can be done and it is managable just different.

I love that you've been able to go so often!!! What wonderful memories!! Social skills are DEFINATLY something I want to work on. Savannah is precious and very loving but is so far behind other children her age socially. I like your plan with taking it slow and steady as well. Definitely makes for a more relaxing vacation and doesn't reguire a vacation AFTER the vacation.

Hello! I have 2 sons, 13 and 22 who also have aspergers as well as a 12 year old daughter. My younger son doesn't notice the crowds and he wants to stay as long as possible. That is what he wants... but what we learned is that he needs to return to the resort after about 8 park hours. DS may not consciously realize how hard he is working to adapt to the noise levels and activity but his body does. He is usually exhausted by the end of the day. Leaving early works out well for us as we can decompress at the pool and have a quiet meal to round out the day. Granted we do lose some park time.... but overall we are a happy and contented bunch.

I hope you and your family have a magical trip.

I think you are right on how draining it is to constantly monitor themselves. We can do something that (before chemo) Sophie could keep right on doing, but Savannah would be done much earlier. And I agree with leaving the parks earlier. I ALWAYS want to stay later, no matter what we are doing, but have learned to leave earlier to avoid really draining, well, both of them at this point.

Thanks to everyone for the well wishes and advice!!! I value it as this is all new and need lots of it!!!

 

[greenjellybean]

I really appreciate all of the advice!!! I'm sorry it's taken me so long to respond. Had a crazy week with the school year ending week before last and had friends spend the night the following two (the girls had friends spend the night... I didn't... ). Then this weekend was spent getting both of them packed and ready to go off to Camp Kemo.

As you can imagine, Savannah REALLY didn't want to go. It's funny. I haven't really been worried about Sophie, who has chemo this week. I've been worried about Savannah. It's a BIG deal to take her out of her comfort zone like this and plop her down somewhere where she really doesn't know too many people and in a place she's never been before. I'm terrified I made the wrong decision to send her and it will be no fun because the stress will be too taxing.

I made sure the staff were aware that this may not be just a case of nerves, but that may not be enough. These are wonderful people, most of whom are in the medical field or childhood cancer survivors themselves, but that doesn't mean they are prepared to deal with a child with Asperger's. Savannah is high functioning and has learned coping skill because she's had to, the same reason we all do. But the momma in me still worries.


She looks so miserable!! The good news is she climbed onto the bus right after I took this and she sat down next to a girl, looked up and gave me the brightest smile. I sincerely hope with everything in me that she didn't somehow manage to fake that and it was genuine!

 

[bookwormde]

Just back from 9 days at WDW

If by professional you mean paid, no all my work is volunteer, but includes advocacy including legislative and education of educators and other professionals about Aspergers/Autism and disabilities in general.

I think we have the same approach or encouraging our kids to push their boundaries. We only seam to get a new food every year or 2 despite lots of trying.

We have worked very hard to make our son self aware of his differences including his gifts and to be a strong self advocate, so sometimes it is a tough balance between encouraging and respecting his self advocacy.

 

[Agent1964fem]

My son is now 23 and was diagnosed with Aspergers . At age 2. We have been to Disney 5 times so far. First visit was 2003.

 

[greenjellybean]

Just back from 9 days at WDW

If by professional you mean paid, no all my work is volunteer, but includes advocacy including legislative and education of educators and other professionals about Aspergers/Autism and disabilities in general.

I think we have the same approach or encouraging our kids to push their boundaries. We only seam to get a new food every year or 2 despite lots of trying.

We have worked very hard to make our son self aware of his differences including his gifts and to be a strong self advocate, so sometimes it is a tough balance between encouraging and respecting his self advocacy.

I have to admit, I'm a little jealous. Nine fabulous days at Disney! *SIGH*
Hope it was a wonderful as it sounds!

I suppose I need to get rid of the word Asperger's, don't I? I understand the phrase itself is being done away with and the 'new' title is Autism Spectrum Disorder.

Whatever you do, whether on a professional or volunteer basis, it's clear you are very knowledgeable and I'm very grateful for the input. Sounds like you've worked very hard to provide your son with the best tools and coping mechanisms at his disposal and I'm not sure you can do more than that. After all, that's every mom and dad's goal.

My son is now 23 and was diagnosed with Aspergers . At age 2. We have been to Disney 5 times so far. First visit was 2003.

Sounds like lots of people have managed to make Disney trips and all of the excitement and change of routine work.

 

[greenjellybean]

For anyone that wants to know, Savannah did GREAT at Camp Kemo! She got along with her cabin mates and they were kind and inclusive in return. It's VERY clear that Savannah is not at the same level of maturity as other children her age and one of the ways it's very evident is in her social skills. She only wants to talk about what she wants to talk about and is very resistant to change topics. They accepted her and didn't treat her any different and she was thrilled. She STILL hasn't quit talking about it. Warms my heart more than I can say.

I'll quit bothering ya'll soon and probably go back to making updates in the thread about Sophie's Make A Wish (I'm using it as a 'journal') but want to put out there that I'm surprised at how difficult this is for me. I've ALWAYS known something was different with Savannah and I should be thrilled that naming something is the first step in addressing the issues that so desperately need to be addressed. But I'm really struggling with this. I think my fear is that with a diagnosis of ASD, there will never be any improvement in behavior issues. That she'll always struggle in a way that most other people will either never really believe or never fully grasp. It was that way before with ADHD and Savannah is still the precious child who is smart, funny and beautiful and artistic. In which case, what is it about hearing Asperger's or Autism Spectrum Disorder that has my heart hurting? Just the label, maybe? Is it something that I should share with others? Certainly teachers, but should we be open or private? I don't have any shame and I certainly don't want her to either, but neither do I want to use it as an excuse for antisocial behavior.

We are only beginning her assessment and her therapist has been very careful to avoid automatically assuming anything, but based on her candid conversations with me, it's clear that she suspects the assessment will only confirm her suspension. Either way, it's clear I will get the answers to these questions and more as we go, I suppose.

Again, thank you so very much for everyone's input and advice! I'm very grateful!

Savannah saying goodbye to her cabin mates, all of whom seemed to genuinely like her, even if they all admitted that they were REALLY tired of hearing about cats.