Help me understand Asperger's

My cousin adopted a little boy when he was just over a year old. He is now about 6, but for the last 5 years things have been very rough for her. She is a single mother that wanted a child more than anything in the world.
She would bring her son to the doctor because we all knew somthing was not quite right... but did not know what it was. There were tantrums, times that we thought he was ignoring us even though we were talking right to him, break downs when he did not eat a certain food at the exact time he wanted it...
Just last year a new doctor diagnosed him with Asperger's. I would like some help understanding what this is so I can help them plan a Disney trip. They would like to go next year and they asked me for suggestions for the trip. I would love to help with her DS too.

He is now attending classes to help him in social situations and to help him communicate. He is able to speak but has a hard time expressing himself. We did find out that part of the reason we thought he was ignoring us is that he does not understand things that are not worded very clear. For instance if we would say "time to go" he would ignore us. We now have to say "go get in the car so we can go home". Everything has to be crystal clear.

Thanks!!

:hi: Angel!

Asperger's -- my favourite subject! I just bought a wonderful book for Harry's class called "All Cats Have Asperger's Syndrome" it is worth a peek...and is very very funny.

Asperger’s Syndrome is a neurological disorder that is related to autism. While AS affects many aspects of behavior, it shares with autism the “core” deficits in social understanding and language. On a basic leve, the person with Aspergers sees and experiences the world differently than people who do not have AS. He may seem to “overreact at nothing” or become very emotional “for no reason.” We have learned that in most instances, there is a reason for why our child responds the way that he does. People with AS often have a unique and at times unusual mixture of abilities and deficits. They may appear to be more capable than they actually are. AS is a pervasive developmental disorder, and it can affect virtually every facet of a child’s academic, social, and emotional life, sometimes in ways that may be unfamiliar to you. There is no “cure” for AS, but research on the disorder and new interventions and therapies are moving ahead quickly.

Many people with AS have special interests. Harry really enjoys talking about Star Wars, video games, and science related topics. Often, a person with AS has a hard time being interested in, or contributing to conversations or topics that are outside of their “specialty”. Our son experiences a great deal of anxiety, as he worries about what other people are doing, or something that is out of order, and he will perseverate on it until it is “straightened away” .

People with Asperger’s are very interested in playing with other children and anxious to make friends, unfortunately it is very difficult for him to do so. Harry has a hard time communicating with other people. He has a difficult time looking at a person when he speaks to them, or when they are talking to him. He often speaks very quickly or mumbles or laughs when he is trying to say something. He is not being rude, and he knows that he needs to try to improve on these things, but it is very, VERY difficult for him to do. Aspergians often have a hard time understanding emotions and feelings. Sometimes my son doesn’t get what you mean when you say or do something, or that he thinks you might be saying or doing one thing, when you were saying or doing something completely different. This can make it difficult for Harry to join in with groups at school. He is very sensitive and feels “bullied” or left out quite easily, as he is not always able to join in appropriately.

All this said -- I wouldn't change a thing about my son. He is in a fully integrated Grade 4 class -- with some accomodations, and specialized tutoring outside of school. He plays Hockey and video games and has a couple of close friends. Your cousin is certainly up for many challenges with her son -- but it is not a death sentence. Most Aspergians grow up to have spouses and families and jobs and full lives. People like Andy Warhol, Bill Gates and Albert Einstein are all rumoured to have had AS. We don't hope for a cure -- but are very welcoming to any strategies and therapies that will help our son to cope in the "regular" world.

I am taking a course on the weekend at a local college that discusses teaching strategies, and another in January that focusses on communication methods with Aspergians. Perhaps this is something your cousin can look into?

There is a plethora of terrific books out there -- and I think I have bought and read them all. They have provided me with a broader picture of what it means to be a parent of a child with Aspergers, what it is like for the person with Aspergers, and what different doctors and therapists have to say on the matter. My approach has been to embrace the AS that is part of my son's personality -- and to face it with humour and as much understanding as I can.

Feel free to PM me for my favourite reading or websites or anything at all.
I hope this helps!

Well, Mickey'sGirl summoned it up extremely well!

My nephew, who is almost 15, was diagnosed with Asperger's several years ago. It was difficult for my sister and her DH to take at first. I believe he was about 10 at the time. But, once we started researching and learning it all fit him to a tee.

His biggest problem is communicating and socializing. He is very literal. He takes everything that is said to him very literally and you have say exactly what you mean when you speak to him. You can't beat around the bush or be sarcastic. He won't understand. You have to get his attention to before you speak to him or he won't hear you.

He is also very emotional. He always has been. He still crys when we see him and then have to leave. He crys when he gets nervous or feels out of sorts. He has learned to control the emotions to some degree now. I think mostly because kids at school made fun of him for crying.

He also has a tendency to latch on to something he thinks is funny or fun and not let go. It usually is something no one else finds funny or fun. One of the younger kids in the family will do or say something that catches him and he'll repeatedly talk about it, for hours or days. He knows that if he lays on the floor my son, who just turned 5, will jump on him and wrestle him. As many times as people have asked him not to lay on the floor he still does because its funny to him that my DS jumps on him. He remembers little tidbits of things that happened years ago and still brings them up.

The hardest part lately has been the social aspect. It's soooo painfully hard for him. It breaks my heart. Kids are cruel! He was being tormented by a boy last year. But, the boy was apparently in a lot more trouble then just tormenting my nephew and was removed from the school and sent away.The situation improved a great deal after that. He has kind of found a nitch this year. He joined the drama club and is really enjoying it. He's grades have improved dramatically because his confidence has improved because he feels like he belongs somewhere.

He is a great kid! I was in high school when he was born. My BIL is in the military so my sister and nephew spent a lot of time at my parents house when my BIL was deployed. I was able spend a lot of time with him when he was little. He's like my own child!

The important thing is that we take him for who he is and make adjustments accordingly. That's hard for a lot of people. My dad, my other sister and her DH are the ones that have the hardest time with it. I find myself kind of running interference when we're all together and trying to get them to understand.

The best thing you can do for your cousins son during a trip, I think, is go with his flow. Understand that he might not get things. Understand that you probably need to explain to him that your going to have to wait on lines, etc. Its probably also a good idea to have a schedule and stick to it. Leave for the parks at the same time each day, eat at the same times, etc. Being all over the place might make it difficult on him.

I'm sure that he'll have a wonderful time! The thing about nephew is that he isn't jaded or corrupted in anyway, even at 15. Looking at the world through his pure eyes is beautiful!

:clappy: congrats to mom for wanting to take him to Disney. :cheer: I'll try not to repeat a lot but if someone looked at a child w/ Asperger's they may think the child just had a behavior problem. He may say something odd, have some odd behaviors and seem hard headed but other than that would appear pretty normal. An important thing to consider is his IQ. What potential does he have to learn and how fast he learns. Most with Asperger's are bright children. This tells us how fast he is capable of learning and if we have to look for other learning complications. For a trip to Disney, this doesn't mean running out to get an IQ but does mom view him as a "bright kid", does she see him as trainable? (this is her perception not reality) Mom's can be pretty worn by the time they get the initial dx. So where is she in this? Sounds like from your description that she is ready to learn and eager for info and fortunate to have your help (I know you Angel ;))
Another complication is the single parent issue. It's tough to raise a child alone, when you get tired there is usually very little support or back up. Not that it isn't hard to raise a child with a dd (developmental disability)with a partner b/c that can put a great deal of strain on a relationship)
So is she going alone? will she have help? Where is she at in training right now? or how much trouble is she having managing his behavior today?
First off, I don't see WDW as a place to break training. I see it as an opportunity to increase behavior skills because of the virtual gold mine of positive reinforcements. With that said I wouldn't run to get a special needs pass simply for the sake of getting to the front of the line(ouch I can feel the flames now). Not that it's not needed b/c it will be-- but to take advantage of shorter lines to increase behavioral and social skills. First off I would not go in July. Try to go during the value season so lines will be shorter. But take advantage of the opportunity to learn to wait in line.
Remember too that mornings are your friend. while each child is different at waking, they are more tolerant to stimuli in the first part of the day verses when the fatigue sets in. Therefore plan the more difficult attractions first.
Have a behavior system that ques him when his behavior is getting inappropriate and use it @ WDW. This helps you help him. Also lay out the consequences in advance-- e.g. if you start swinging and hitting or screaming we will get out of line-- and do it. Next, have a plan for a melt down.
Be aware of his routines and his likes and dislikes. IF he doesn't like loud noises than mark the rides that have loud noises and maybe try one in the morning after warning him and he still wants to do it. Many kids with Asperger's don't transition very well, meaning changing from one activity to the other.
As Jennifer mentioned about her son loving Star Wars, most will have their favorites and just focus on that on ride or one character. Use it to your advantage. Say if he loved star wars and you were in MK try to incorporate tomorrowland into the star wars theme and bring a small character with you.
So here is your homework:
How are they doing right now? Can she take him to the mall without problems?
Is anyone going with them?
What time of year?
What are his problem behaviors?
What are his likes and dislikes?
What can throw him into a meltdown.
Will they do DDP? (might not be a good idea but depends)
What level will they stay? Value, Mod etc.
How many days? Hopper?
I think that could get us started and you can PM me with the private questions... :pixie:

First, thanks for the responses. Everything you guys are saying describes Patrick Michael to a T. All this time we did not know what was wrong... was he a bad kid? ADD? Was it inexperience of the part of his new mom? So much goes through your head...
One thing I did not mention is that her DS is of another race. We are not sure what, but he looks like he is mixed, perhaps white and African American. Of course this only adds to the stares they get when they go out.

How are they doing right now?
Okay. He is in classes to help him deal with social issues and communication

Can she take him to the mall without problems?
They have good days and bad days

Is anyone going with them?
Right now it is still in the planning stages. They might try to work it out to be there while we are.

What time of year?
Either February or November

What are his problem behaviors?
Does not like loud noises, but yells when he talks. Has temper tantrums, but has gotten much better with age.

What are his likes and dislikes?
Likes games and TV, but only select shows at certain times

What can throw him into a meltdown.
This one I have never figured out.

Will they do DDP? (might not be a good idea but depends)
No, I have suggested that they not do the DDP because of his eating habits/times. I think everything will be thrown off while they are there and having to plan a sitdown meal every day might be too much. I suggested that they make an ADR for almost every day and plan it for a time when they usually eat. If Patrick has a food meltdown and they have to eat early, cancel the ADR.

What level will they stay? Value, Mod etc.
I suggested a moderate or WL. I think the slower the pace is in the morning the better the day will start.

How many days? Hopper? 5 to 7

I did not expect homework Beth!!

My 10 year old son also has it. We didn't know for sure untill he was about 8 yrs.
I always thought he was just a quirky kid, and family memebers thought he was spoiled. He had his ways of doing things and meals were a real problem. His food can not touch ( sometimes different plates). He has to have different silverware for each thing. He also loves Star Wars, Science, computers.
We were always told he was too emotional and that he needed to toughen up.

When we finally figured out what it was he had alot of testing done and found out he has some parts of his IQ were very high and others in the normal range. He does great in school, all A+ to B+, but he can not handle timed tests or being rushed he is a big one on perfection. We are right now working on using an eraser if he makes a mistake on his work. He won't use one because it makes his paper too messy.
He also hasbeen bullied big time at school to the point he has told the school and me that he is going to hurt the kids so they feel like he does, and this year he has started being the one to pick on the kids.
We were told he is so emotional because kids with aspergers have very high anxiety and his is very high. He now takes Zoloft every day and it has made a world of difference. I was hessitant at first to medicate but he really needed it. He still cries more then most kids but not as easily as before. Now when he starts to cry for no reason we know he is very stressed for some reason and he needs to calm down and relax.

I will tell you it has not been easy, and the worst part is getting family and others to understand that he can't help it and he isn't just being difficult.We have to follow a routine for almost everthing and if it is going to change he needs to know. This is one thing that will throw him off and then we have problems. At school they work alot with social stories.
The one thing I was told by the specialist at Childrens Hospital here in Minnesota was these kids don't have to fit into other people world we need to learn to fit in to theirs. My family has been great with accomidating his quirks, though sometimes I have to remind them.:blush:

Good luck, and I too an still learning about this so I could use any and all support I can get. It sometimes can be hard on us parents because they look normal on the outside, but people don't understand and can be very judgemental.:(

How are they doing right now?
Okay. He is in classes to help him deal with social issues and communication
I'm trying to figure out if he's mild, moderate or severe? and how mom handles it. We all have different levels of tolerance and it does help to know his behavior is not intentional. I've seen some mom's that are so frayed by the time they get to therapy that they are practically having a meltdown with the child. So it's important that mom has confidence about managing his behavior and accepts that there will be times she will have to make adjustments and do it FAST. Classes will help. I'm going to assume he's not "mild" b/c some of these children's behaviors can go unnoticed for a while.

Can she take him to the mall without problems?
They have good days and bad days
I suspect that they will have the same @ WDW and maybe more b/c of all the new stimuli. This is why it's so important to have a backup plan. Rules like: when in a short line (and even F/P has a short line sometimes) you get out of line until he calms down. If he is really afraid of the ride don't push it. Go back a second time but tell him if you get out of line again you won't go back for x days or hours, next trip etc.
I like a token system. He starts w/ so many tokens (doubloons make great tokens) and you give him a warning before taking a token away. If he runs out of tokens he has to leave the park. The important thing is he knows the consequences beforehand. DON'T make rules and break them this will increase the unwanted behavior.
Is anyone going with them?
Right now it is still in the planning stages. They might try to work it out to be there while we are.
:thumbsup: I'm so glad she is planning ahead and thinking of taking him. Alone can be tough b/c it can even be difficult to do something simple like go to the bathroom especially at his age or to get food from a CS w/ a child going one way or reached his limits. Do make sure it's someone who is going for him (someone like you) I'm sure the adults will make some sacrifices.
What time of year?
Either February or November
Sounds good- value time would be best.
What are his problem behaviors?
Does not like loud noises, but yells when he talks. Has temper tantrums, but has gotten much better with age.
Tell mom to note his triggers-- was he tired? hungry? distracted? Most don't like loud noises or sudden changes. I might hesitate taking him into a store filled w/ souvenirs late at night b/c mom will be worn out and have less tolerance and Patrick may want everything in sight. I might consider skipping the backlot tour as this could be frightening or other rides with lots of fire or loud noises. As I mentioned go for the scarier rides early and mild rides, parades and shows later. Try to plan your activities then follow them loosely. When in line or shortly before discuss what you will do after that activity so you have something to redirect him with if he is distracted by the gift shop at the end.
What are his likes and dislikes?
Likes games and TV, but only select shows at certain times
It's great to find a character that he can carry with him for long lines and to distract him when he's having difficulty.
What can throw him into a meltdown.
This one I have never figured out.
Ask mom to keep a log - time of day, hungry? etc. to figure out if you can id the triggers. You can't catch them all but she should know some that make his day worse...

Will they do DDP? (might not be a good idea but depends)
No, I have suggested that they not do the DDP because of his eating habits/times. I think everything will be thrown off while they are there and having to plan a sitdown meal every day might be too much. I suggested that they make an ADR for almost every day and plan it for a time when they usually eat. If Patrick has a food meltdown and they have to eat early, cancel the ADR.
I agree and too many TS can be difficult b/c I'm sure they could use the extra time in the parks. They may be better off with a break at the room than a sit down meal at Disney's specified time.

What level will they stay? Value, Mod etc.
I suggested a moderate or WL. I think the slower the pace is in the morning the better the day will start.
Usually more convenient and quieter. Pop has so much stimulation and a noisy great hall. :thumbsup:
How many days? Hopper? 5 to 7
Good not too short or too long...

I did not expect homework Beth!!:thedolls:

Maybe some of these "experienced moms" can share some of their 1st trips and their success and failures. Meltdowns?? rides that they avoid?
They have such valuable information.

Hi! I have an 8yo DD with AS. One invaluable tool we use are earplugs! My daughter too has issues with noise and anxiety, and she can do just about anything at WDW with earplugs! DD is not prone to tantrums, so we are fortunate with that. We actually go with her flow during the trip. We go a lot, so we can spend hours at Animal Kingdom in the "dinosaur dig area" because she loves the way the little rocks they use for sand feels. My best advice: Earplugs and take it slow!

The most important thing to note is that every child is different..... and their triggers and comforts will vary a great deal.

Breaks in the day and a proper sit down meal with good food is an essential part of our day. Our Asperger kid seeks out vegetables and fish to eat.... and it's hard enough getting that at a TS restaurant in WDW!

Pugslave spends time at AK for her daughter, we spend loads of time at Epcot for our boys (the technology in FW combined with the space to roam around the WS really make Epcot our favourite!) -- but this all comes with experience.

I am going to PM you with a great book list for you to share with your Cousin -- one of the best is written by a parent named Jeffrey Cohen -- it is written with such Humour -- and he could honestly be writing about our Harry.......

Anything I can do to help...just let me know. We have 8 Harry trips, and 6 Euan's under our belts! Jeri -- PM me any time to chat! :hug:

Hi Angel:

My son Rhys also has autism & we've taken him to WDW three times, the most recent trip was in September. Here's some things that have worked for us and for friends who also have kids "on the spectrum:"

• We really like the cabins at Fort Wilderness. They're very quiet and fairly roomy. We liked having space for Rhys to spread out and play with his dinosaurs and process all he experienced. Plus, the look on the kids faces the first time they saw the murphy bed come out of the wall was absolutely priceless!
• Earplugs are a must. People with autism can be very sensitive to loud noise, things that we may not even notice. In addition, they also have a very difficult time filtering out the multitude of stimuli that comes at them. Both of these are issues for Rhys. Having earplugs helps him to focus better when he's getting overloaded and deal with his sensitivity to the noise. If Patrick Michael has an iPod or MP3 player, consider bringing that as well. It will give him something familiar to listen to, especially when waiting for a ride or show.
• Use Fast Pass whenever possible. Also send them to Guest Relations at the first park they visit for a Guest Assistance Card.
• February & November are excellent times, but try to avoid big holidays like Thanksgiving -- too many people, too much going on. We did this once and while any trip to WDW is a good trip, Rhys had several meltdowns because there was so much coming at him and we couldn't do everything he wanted to.

You and I are practically neighbors, so I'd be more than happy to help you and your friend plan this trip. Just give me a yell if I can help!

Robyn

I have two children with high functioning PDD, daughter 10 and a son 13. We take a DISNEY vacation every year and have never had a problem. We always stay at the FW cabins, it's like a home away from home. My blood pressure drops 10 points just driving in. Go to Wal-mart and stock up on groceries, and your kids favorites.

Here's a typical day...make breakfast at the cabin...take rental car( always have your own car) to TTC then monorail to MK. YOU know that our kids can't wait very well and stress out over just about everything so waiting for busses is not an option for us. SO THAT BEING SAID...GO to CITY HALL to GUEST SERVICES and get the Special needs GUEST ASSIST PASS. remember that you may need documentation, especially if your child looks typical. My DD's autism is mild but apparent. THIS PASS will allow you to use the fast pass lane immediately, and in some cases like Big Thunder you actually go into the ride thru the exit. NO WAITING!!!! THis is a huge help for our family as our kids can't do lines, and avoids meltdows, scenes, tantrums, ect...

Break up the day...if by noon they are overstimulated then go back to the cabin have a cook out, dip in the pool, nap. Then we are ready for a show or Epcot at night. :mickey:

ALSo use the NEVERLAND CLUB at the Polynesian Resort!!!!!! It's a supervised child care. My kids love the dinner buffet, mac and cheese, pizza, corn on the cob, movies, crafts and games. It goes to age 12 and I just let the staff know that my child is special needs and they have ALWAYS been exceptional. My son was anxious once and staff used the beeper to reach us and we picked him up...the next night he was fine.

Take a trail ride at the FW...Staff was fabulous with my daughter.

HAVE FUN...ASK FOR HELP AND DISNEY WILL MEET YOUR SPECIAL NEEDS :mickey::number1:

My younger brother has Aspergers and going to Disney is his absolute favorite thing. We also use the guest assistance pass to get in through the fastpass lines or handicapped entrances because it relieves stress on him by waiting on the stand by lines.
For daily life Aspergers he has his good and bad days. Once someone pushes him over the edges it's diffucult to get them back to normal. We found that using perscription tranquilizers when he gets nervous or out of hand really help calm him down. I don't know what else you want to know but I've dealt with his problem my whole life. If you have any questions you can PM me. :mickey:

I do have to agree, that once my son gets overwhelmed, and starts "stimming" it can be difficult to calm him back down. Fortunately, we had not had to use any meds to help us, but it can make for a challenging next couple of hours.

DW and I have two sons with autism. We took them to Disney World a year ago last June. We were very anxious, as we had invested a lot of time and (for us) money into making sure it was a good trip, and we didn't want it to end up a nightmare for all concerned, including our two daughters.

We need not have worried. Disney was soooo accommodating. The first thing we did was to ask for Guest Assistance Passes for each child. Because each DS has different likes, we needed one for each in case one or the other didn't want to go on a particular ride. They were so helpful, DW actually broke down in tears; scared the poor CM half to death. DW is so used to having to fight for the boys, that she was actually shocked that people were so helpful and understanding.

Once in the park, their behavior was gold. The "stimming" they do in a typical day was gone. They were so engaged, so intrigued, that they really paid attention. Having the Guest Assistance Pass helped us avoid long lines, except at the bus stop at the end of the night. Youngest DS had a small meltdown, but calmed down quickly once we were on the bus.

In short, we had the time of our lives, and are planning a return trip next August.

While every child is different, our experience was that Disney was an awsome place for our autistic sons. Here's hoping it's the same for your special one.

You guys are the greatest. I am going to send the link to this page to my cousin. I am sure she will love to have other parents to turn to for advice.
I can help her with all things Disney, but I think the rest of you will be the biggest help of all.

I'm a special education teacher who works with students with ASD (autism spectrum disorders). I also have an 11yo nephew with ASD. Here are my suggestions for WDW. I would get a book with detailed info. about the rides and other tidbits of info. Read about the rides so you know which ones are loud or too bright or flashing lights. Be prepared with earplugs or a hoodie or sunglasses so your nephew can block out the stimuli that may bother him. Read the book or get ideas here for quieter places in each park so that if your nephew needs a break, you'll know where to go. Ignore any stares. You know what is best for your loved one and the gawkers don't. And remember you might think someone is staring but maybe they're actually commiserating. Consider staying onsite so that you can get back to your room quickly if necessary - and others in your group can meet up with you later. Bring snacks and drinks or purchase and keep nearby so that if he needs to eat quickly you are ready. Bring that GameBoy or other hand held item if he likes that sort of thing so he can "zone" if necessary while in line or otherwise. Do what you gotta do! You know your loved one best, so just anticipate his needs. Going during an off time would be great. We brought our family the week after Martin Luther King Day and LOVED the nearly zero crowds. Have a great trip.

First ... Enjoy the trip. I have a son with Autism, been to Disney 6 times or so .... it is one of his favorite places on Earth.

If you go in Feb, pick the 1st two weeks. The second half of Feb is the start of the spring break season ..... a lot more crowded and also more expensive usually.

The special guest passes are a good idea ... especially if there is an issue with long waits. We don't usually need them, but they helped out one day.

MEALS: ASK THE CM if you need ANYTHING. My son has a restricted diet like you would not believe. At sit down's the Chef usually comes out to discuss the meals with us ... listens to his restrictions ... then asks "what can I make for you?" Magical words. They will do everything possible to accomodate reasonable requests (may take 15 minutes to cook the meal ... but it is worth it). At counterservice, the manager will have an ingredient list for every item ... and usually will make substitutions where they can.

Understand his triggers: As mentioned, figure out what he can / can't do. If glasses are an issue, practice with sunglasses prior to the shows. Noises .... bring ear plugs.

His Pace: let him set some of the paces. I rode the flying carpet ride 7 straight times ... but it was one of my son's best hours at the park.

Use it to reach out to him: Can always make him request things, communucate more. We have been working on finding motivators to keep my son interested ... Disney is full of them.

Try to bring a second adult. 2 adults with 1 child is much easier than 1 on 1 .... everyone needs a break.

Disney is a magical place ... especially for families that need a little extra magic.