Austism: refuses to travel anymore

[DisneyOma]

I have and she is being treated. Just wondering if anyone else experience this.

Thanks for the clarification - hope I didn't sound too harsh in my OP. I work with students with a variety of developmental issues, etc, and my advice when a serious change occurs in personality or behavior is always 'see a doctor' - rule out medical issues, move on to social issues, etc.

She is 22 , legal adult, she can sadly do what she wants, forcing is against the law. It sucks but its the law

Not all 22 year-olds are at the capacity to be considered legal adults, FYI. Some remain under the care and jurisdiction of another person for their entire lives. So not all 22 year-olds get to do whatever they want.

 

[MrsBlovesDisney]

Just wanted to come on and say God Bless OP!! As a parent of an autistic son (20), so many times it is a guessing game as to what is going on inside his head. There's nothing more heart wrenching than trying to help a child who cannot express themselves. I hope you find peace, whatever the outcome.

 

[arminnie]

A friend’s autistic son, now about 33, started refusing to travel in his early 20s. He used to fly, but just decided that he was done.

 

[FortForever]

She is 22 , legal adult, she can sadly do what she wants, forcing is against the law. It sucks but its the law

Wow, the OP clearly loves her daughter very much and wouldn't "force" her to do anything. I can say that with certainty just from reading her posts, without even knowing her.

The thread is about support and sharing experiences. Most parents will do anything to make their children (even grown) happy. This is the case with grown children with disabilities, sometimes even more so. The mom is willing to give up traveling for her daughter, she has stated that. It's about trying to understand, certainly not about trying to force anything.

 

[Hopefully]

She is 22 , legal adult, she can sadly do what she wants, forcing is against the law. It sucks but its the law

Once again- WOW. JUst WOW.
So sorry

 

[lanejudy]

Folks, please remember that it can be difficult to discern “tone” through just posts. And sometimes our words don’t come across as intended.

If you don’t have suggestions for the OP, feel free to move along.

 

[AdamEfimoff]

Folks, please remember that it can be difficult to discern “tone” through just posts. And sometimes our words don’t come across as intended.

If you don’t have suggestions for the OP, feel free to move along.

no I am so sorry. I actually meant that tone. It was supposed to be like that. But in hindesite should not have written it

 

[Princess Disney Mom]

People (all people) change throughout their lives. It's normal. Some people become homebodies. Some people want to travel
more. Some become more social, some more introverted. She's changed. Let her be. Find a way to make her happy, but also keep doing what you love to do too. Get someone else to stay with her so you can keep traveling.

Yes, that is what we do. She stays with her brother and has a blast. Though this means the end of family vacations.
She still loves everything Disney; spends time with YouTube videos, watching the movies, has all the clothes and toys. I think she likes to be home now as she does not want to even go on beach trips.

Looking back on the GF trip, in the gift shop they sold the Disney Candyland and she wanted regular. We ordered her the regular from Ebay but our mistake had it shipped home. That may have been the trigger.

Just a few months prior to the GF trip we were to fly from BWI to FLL and I did not know due to weather the flight was cancelled until we got to the airport. Since we went to BWI and then came home for her that was the entire trip.

It's hard to know how she will interpret anything.

 

[Princess Disney Mom]

What is her current level of functioning? High enough to hold down a good job & live independently, or not? If not, I recommend talking it over with a therapist/doctor who works with her, to sort out whether this is really just a new preference, or if it's part of a broader gradual withdrawal from the outside world. The latter is something you need to keep an eye on when you have a child with autism. (I have one, as well.)

Thanks, I am working with a behavior specialist and psychiatrist. She functions like a very young child and cannot hold down a job. Though she does simple jobs like shredding and rolling silverware which she loves. She is happy doing local things such as museums, church, skating, shopping, monuments, trampoline venue, pools and more. I'm thinking if WDW and the beaches were close enough to come home at night she would still go.

 

[Princess Disney Mom]

Completely random thought (and no expert at all) but since the change was so dramatic Day 1 at the GF and the timing sounds about right, is it possible she overheard someone discussing the unfortunate alligator incident at the GF beach? I could see someone talking about it in the shops or by the pool at a time you might not have heard.

The fact that she wouldn't let anyone leave the room Day 2 suggests a protectiveness or fear for the safety of herself and family?

Thanks and you are correct with the timing it was shortly after the incident, though she cannot understand what happened with the alligator incident. She was clear she did not want to go to the MK and since we had a car we offered her Daytona beach so we could drive on the beach and she could even stay in the car and she said no.

 

[Princess Disney Mom]

She is 22 , legal adult, she can sadly do what she wants, forcing is against the law. It sucks but its the law

Nope never forced her on a trip. (not to get into the law but she is not functioning to make adult decisions, we have guardianship) The trips we took were centered around her because she wanted to go to NYC, the beaches, WDW, Disneyland etc. She loved WDW the more than anything from 2003-2016. I would do whatever she wanted which included riding the People Mover over and over and over and over. Sitting for an hour watching the jumping water in EPCOT or enjoying the trash can with bubbles that came out.

I do wonder if one day she will snap out of it and want to travel again. She does talk about going to eat at Goofy's Kitchen in CA.

 

[PollyannaMom]

She had stayed at the GF before. She does not want to go to any beaches anymore either by plane or by car.

Completely random thought (and no expert at all) but since the change was so dramatic Day 1 at the GF and the timing sounds about right, is it possible she overheard someone discussing the unfortunate alligator incident at the GF beach? I could see someone talking about it in the shops or by the pool at a time you might not have heard.

The fact that she wouldn't let anyone leave the room Day 2 suggests a protectiveness or fear for the safety of herself and family?

That's what I was thinking when I read about being extended to other beaches as well.

Kids (any kids - let alone ones with autism) often understand (or misunderstand) more than they can tell us.

 

[Princess Disney Mom]

Just wanted to come on and say God Bless OP!! As a parent of an autistic son (20), so many times it is a guessing game as to what is going on inside his head. There's nothing more heart wrenching than trying to help a child who cannot express themselves. I hope you find peace, whatever the outcome.

Thank you so much for understanding. I just want to make her happy and yes with her limited communication I have to guess what may be going on.

 

[MrsBlovesDisney]

Nope never forced her on a trip. (not to get into the law but she is not functioning to make adult decisions, we have guardianship) The trips we took were centered around her because she wanted to go to NYC, the beaches, WDW, Disneyland etc. She loved WDW the more than anything from 2003-2016. I would do whatever she wanted which included riding the People Mover over and over and over and over. Sitting for an hour watching the jumping water in EPCOT or enjoying the trash can with bubbles that came out.

I do wonder if one day she will snap out of it and want to travel again. She does talk about going to eat at Goofy's Kitchen in CA.

Sorry this is going to be long lol.....

Princess Disney Mom.......YOU ARE ONE AMAZING MOM!! As a parent living in your shoes (my autistic DS20 seems to be at the same level as your sweet daughter), many have no idea what it's like on a day to day (sometimes minute to minute) basis trying to keep our kids content, safe, and happy. Our son eats, sleeps, breathes Disney (currently watching Wishes on youtube as it is a snow day here in MA lol). His favorite ride is the monorail, followed by Dumbo. We bought him a 5 day ticket and ended up going into the MK for about 3 hours last week during our trip. But that's ok, because it's all about him anyway. He doesn't like to do many activities even at home. He doesn't like bowling (not even Special Olympics activities), but enjoys shooting hoops and other outdoor activities. We used to force him to do activities when he was younger but feel he can make more decisions about his life now....(we also have Guardianship FYI). He never asks for anything (Christmas is always difficult because he never wants anything). Your story rings familiar to me only because of a recent incident with us. He had to have all 4 wisdom teeth out (they weren't bothering him but bottoms were impacted and easier to remove when younger than when older so they say). What an ordeal....from trying to explain what was happening, to even getting him to go into the hospital (he's 250 lbs). He refused the IV, kindly by saying "no thank you"...always a gentleman lol. I knew something was up when about 5 people dressed in scrubs showed up. I have always been strong enough to hold his hand thru anything, but my heart was breaking for him and I started to weep. Luckily hubby was staying strong so I could sneak out of the room to catch my breath. Sadly, before I could go back to him, they rolled him out and into the OR and I could hear him crying from the hallway. I felt like a horrible mother. When he came to, he cried inconsolably for about 45 minutes (which seemed like an eternity). The Doc said that he's mentally at where he was right before he went "under". Ugh no wonder he was crying so much. Anyway, he did recover...tho it was a long long emotional exhausting week after that. The reason I'm telling you this story is because ever since the surgery (or so it seems) he doesn't want to be left alone. For maybe 6 months leading up to his surgery (which was 4 weeks ago) he had started to stay home alone for an hour or so (he knows how to FaceTime from his iPhone, but won't talk on the phone lol). But that has changed. He always wants someone to be with him. We have been trying so hard to figure out why. Does it have to do with the surgery and being wheeled into the OR with strangers? Did something happen at school to scare him? At home? We consulted with school staff to see if they could figure it out but they couldn't either. He IS slowly doing better (hubby and I ran to the market for about a half hour the other day) and he was perfectly fine with it (had he said "stay" we wouldn't have both gone). Guess only time will tell what the future holds. Anyway, even if you can't figure out the "why", I know you will be content with "what is happening now".... cuz' you're already doing a fantastic job at it!!

 

[Princess Disney Mom]

A friend’s autistic son, now about 33, started refusing to travel in his early 20s. He used to fly, but just decided that he was done.

Thanks for sharing.

 

[Princess Disney Mom]

Sorry this is going to be long lol.....

Princess Disney Mom.......YOU ARE ONE AMAZING MOM!! As a parent living in your shoes (my autistic DS20 seems to be at the same level as your sweet daughter), many have no idea what it's like on a day to day (sometimes minute to minute) basis trying to keep our kids content, safe, and happy. Our son eats, sleeps, breathes Disney (currently watching Wishes on youtube as it is a snow day here in MA lol). His favorite ride is the monorail, followed by Dumbo. We bought him a 5 day ticket and ended up going into the MK for about 3 hours last week during our trip. But that's ok, because it's all about him anyway. He doesn't like to do many activities even at home. He doesn't like bowling (not even Special Olympics activities), but enjoys shooting hoops and other outdoor activities. We used to force him to do activities when he was younger but feel he can make more decisions about his life now....(we also have Guardianship FYI). He never asks for anything (Christmas is always difficult because he never wants anything). Your story rings familiar to me only because of a recent incident with us. He had to have all 4 wisdom teeth out (they weren't bothering him but bottoms were impacted and easier to remove when younger than when older so they say). What an ordeal....from trying to explain what was happening, to even getting him to go into the hospital (he's 250 lbs). He refused the IV, kindly by saying "no thank you"...always a gentleman lol. I knew something was up when about 5 people dressed in scrubs showed up. I have always been strong enough to hold his hand thru anything, but my heart was breaking for him and I started to weep. Luckily hubby was staying strong so I could sneak out of the room to catch my breath. Sadly, before I could go back to him, they rolled him out and into the OR and I could hear him crying from the hallway. I felt like a horrible mother. When he came to, he cried inconsolably for about 45 minutes (which seemed like an eternity). The Doc said that he's mentally at where he was right before he went "under". Ugh no wonder he was crying so much. Anyway, he did recover...tho it was a long long emotional exhausting week after that. The reason I'm telling you this story is because ever since the surgery (or so it seems) he doesn't want to be left alone. For maybe 6 months leading up to his surgery (which was 4 weeks ago) he had started to stay home alone for an hour or so (he knows how to FaceTime from his iPhone, but won't talk on the phone lol). But that has changed. He always wants someone to be with him. We have been trying so hard to figure out why. Does it have to do with the surgery and being wheeled into the OR with strangers? Did something happen at school to scare him? At home? We consulted with school staff to see if they could figure it out but they couldn't either. He IS slowly doing better (hubby and I ran to the market for about a half hour the other day) and he was perfectly fine with it (had he said "stay" we wouldn't have both gone). Guess only time will tell what the future holds. Anyway, even if you can't figure out the "why", I know you will be content with "what is happening now".... cuz' you're already doing a fantastic job at it!!

You too are a terrific mom! If you ever make a trip to tour DC let me know we can get our kids together. The American History museum is great for autism they have a replica of the Chicago subway from the 1940s that you can sit on and it vibrates and the widows light as it you are pretend moving. We sit in that for 1 hour every month. To get her off when the movie playing of the conductor inside the subway makes a stop I announce to her "We are here, it's our stop" and she gets off. I totally understand you!

 

[MrsBlovesDisney]

You too are a terrific mom! If you ever make a trip to tour DC let me know we can get our kids together. The American History museum is great for autism they have a replica of the Chicago subway from the 1940s that you can sit on and it vibrates and the widows light as it you are pretend moving. We sit in that for 1 hour every month. To get her off when the movie playing of the conductor inside the subway makes a stop I announce to her "We are here, it's our stop" and she gets off. I totally understand you!

That sounds like great fun...my son would love doing that!!

My daughter goes to school in PA and LOOOVES to visit museums....especially in DC (she was JUST THERE visiting friends and that was their MO....museums lol)!! I'll have to ask her if she's been there!!
Only the best to you and yours!!

 

[Simba's Mom]

Not us, but we met some people at HHI whose son had refused to travel by ship. Just be grateful that you didn't find out as they did. They had reservations for a Disney Cruise, but when they got there, their son refused to get on the ship. It was a long drive home, so they looked for a place to relax for a couple days and break up the drive. Hence their visit to HHI (which he was perfectly happy with).

 

[MrsBlovesDisney]

Not us, but we met some people at HHI whose son had refused to travel by ship. Just be grateful that you didn't find out as they did. They had reservations for a Disney Cruise, but when they got there, their son refused to get on the ship. It was a long drive home, so they looked for a place to relax for a couple days and break up the drive. Hence their visit to HHI (which he was perfectly happy with).

One of the main reasons we will never go on a Cruise. We do not know what to expect with our son. Even staying in Disney. We have in the past made reservations for split stays to try different resorts. Our son loved the Contemporary, so years ago we would book one resort for the first half and follow up at the CR. Sadly, that didn't work out so well. The rooms were either too dark, or on the whole the resort was too loud for him. Day one I would find myself at the front desk pleading to move over to the CR that same day (as my son would be pacing back in the room). This happened at 3 different resorts. We resolved to only staying at the CR....which is perfectly fine with us....now we are DVC members at the BLT.

 

[Hootenany]

We also find ourselves in a similar situation with our son, 16. He is refusing to do any local activities lately. He is excited to go to Disney, but right now is no longer willing to go bowling, to the local zoo, parks, etc.

Part of me thinks that he this is his way of exhibiting control. I am sensitive to the fact that he has very little say in what he gets to do compared to most kids his age. I think that his refusals are his way of letting us know that he wants to be a little more independent in his own decision making skills. I think back to when our daughter was his age and the push-back that she gave us about things (staying out with friends/ social events, etc.). In comparison between my 2 kids, we received pushback from both, but with very different situations.

I also have done a little research as it bothers me that our son is refusing to do some of the activities he loved so much as a little boy. I found this chart to be a little reassuring that this behavior may be "normal" and that one day he will move past it. Our son is 16, but developmentally delayed. If you look at the "Autonomy" row under the column of "Early Adolescence", one of the milestones lists "Things of childhood rejected". In my son's situation, he may not be yet rejecting his childhood toys, but is rejecting his childhood experiences.

I wonder if you allowed your daughter to believe that she was in "control" of planning a Disney (or other) vacation, if she would be more open to travel. Allow her to research the resorts (internet, books or pictures) and pick where she wants to stay. Allow her to pick out restaurants and attractions. This is the same strategy we are using with our son next week for Spring Break, only with local outings. I am hoping it will work.

Good luck to you OP! You are an amazing mom and I am hopeful that your sweet daughter finds her love for travel again soon!