ASD (autism) and social anxiety: how to cope with it?

[dntd]

This trip is one I'm going with my sister,her son and my three youngest. We live close to Niagara falls and go to marineland in the summer,my son rarely goes. He can't be around crowds as he's a runner, he doesn't like rides as he has a weak tummy though he does vomit on purpose to get attention. After years of tears, I now choose my battles.

 

[Marleen2]

Ohh... marlene2....I feel for you! I have had days like the one you had there in the Magic Kingdom...and just know, you are not alone!

One thought occurred to me... if your son responds better to men, is there a male relative who might come with you? an uncle or a cousin or grandfather?

My son was diagnosed with PDD-NOS at age 10, some of these kids aren't as easy to spot until life turns up the heat!

It feels good to be able to talk to you guys about it, thanks

Taking someone to accompany us hasn't been an option so far. There's no uncles/cousins at all (exept from my ex' side of the family) but that's not really an option. Taking my 83y old father wouldn't be an option either.
I have considered taking a friend once, but he wasn't into Disney at all, and he didn't want to spend the money on a plane ticket and park tickets (I could provide him with the accomodation but paying all his expenses wasn't an option for me either, being a single mum), so...

I'm just secretly hoping I will meet some nice guy with a son about my son's age (and preferably a daughter as well ) who can accompany us next visits... who knows...

 

[Marleen2]

This trip is one I'm going with my sister,her son and my three youngest. We live close to Niagara falls and go to marineland in the summer,my son rarely goes. He can't be around crowds as he's a runner, he doesn't like rides as he has a weak tummy though he does vomit on purpose to get attention. After years of tears, I now choose my battles.

We just have to... we just can't win them all, and we and the rest of our families are entitled to spend some quality time as well.

 

[NotUrsula]

I would be willing to bet that there was some specific incident that triggered this behavior for your son; the business of not wanting to be around anyone female in public is what stands out for me. If you could get him to tell you (or his Dad) what it was I'll bet that it would relieve a lot of his stress. All of this of course presumes that his Dad accepts the diagnosis; if he doesn't, and has let his son know that, that may be your answer right there.

Anyway, as a bit of a start, I would suggest reading some memoirs of adult Aspies, including Temple Grandin's. She had very severe issues with anxiety, and she does take medication for it. Maybe seeing some of her reasoning about what upset her as a teen could help give you some insight. IME, puberty does a serious number on the average Aspie, much moreso than it does NT kids, and you know that's saying something.

Vacations are actually the very best times for us with DS, because they force him out of his usual routine, yet he is completely free, because aside from the immediate family NO ONE who sees him on vacation will ever see him again. It doesn't matter if he wears goggles on the beach, it doesn't matter if he hangs out with his little sister in the splash fountain (DS fixates on fountains), it doesn't matter if he sings Zip-a-dee-do-dah at the top of his lungs, etc. What happens in Orlando stays in Orlando. (We are careful never to put up any photos that might cast him in an "embarassing" light, however.)

Good luck, and I hope he learns to manage better.

 

[Marleen2]

Yes there was a specific incident that triggered his behaviour. I didn't include it in my story as the story was long enough as it was.

This is what triggered his reaction: we had dinner at the Noodle station at Tomorrowland Terrace. When finished eating, my son hadn't finished his drink. I told him to take it along, but he didn't want to. We had a short discussion about it (in a calm way), and then I figured he might not want to take it as the disposable cup had a castle print on it and he wouldn't want to be seen with that, so I suggested that I would take the cup with me and I would give it to him whenever he would be thirsty. While saying that, he crushed the cup and there was nothing else to do than throw it away. I told him I didn't like that he did that, after all the cup was still half full. All this time I kept my calm.

Probably all this wouldn't have happened if I hadn't made an issue out of that cup and had just let him throw it away. It really wasn't worth the spilt dollar. But I want both my kids to be aware of the value of things, and not just to spill food like that.

As he couldn't be calmed down and I decided to leave the park, that also put oil on the fire. As he loves the Extra Magic Hours, and it was the only time we ever were there Magic Kingdom was open until 3am!!! If we left he would miss that. I'm not sure if he thought about that at the time, but that might have topped it and caused this reaction.

When I try to talk to him about the reason why he doesn't like to be around his sister and me, his explanation is that it's not cool at his age to hang out with his mother and sister. But maybe there's underlying reason that I don't see. Talking about his dad, his dad doesn't indeed accept his diagnosis, moreover, I'm pretty sure his dad has ASD as well (never noticed it until our son got diagnosed). I don't see how that would explain why our son wouldn't want to be around females in public, though?

Thanks for suggestion reading Temple Grandin's books. I know who she is but I never read anything she wrote. I did read some books of Peter Vermeulen, which is an expert on autism here in Belgium. They're in Dutch (my native language), but some of his books got translated into English, and several other languages as well.
It would be a good idea to read something about anxiety, specifically, to get more insight on this.

Now, I was just thinking yesterday night... It's a big step for him to go to WDW again, and for me and his sister to take him there again, but I'm so anxious to go to WDW again myself, that I didn't even think of another solution: we could go to Disneyland Paris for one or two days as a "trial". It's just a 4 hour drive from where we live.
I will try to get some more insight on his anxieties, and talk to this therapist about it, and hopefully he would be willing to come with us to Disneyland Paris and maybe even next year to WDW again

Thanks

 

[kaffinito]

My son got his diagnose at the age of 13, which is a difficult age as it is. Now that I know what ASD is about, I can't imagine I never noticed it before.

When I try to talk to him about the reason why he doesn't like to be around his sister and me, his explanation is that it's not cool at his age to hang out with his mother and sister. But maybe there's underlying reason that I don't see. Talking about his dad, his dad doesn't indeed accept his diagnosis, moreover, I'm pretty sure his dad has ASD as well (never noticed it until our son got diagnosed). I don't see how that would explain why our son wouldn't want to be around females in public, though?

Now, I was just thinking yesterday night... It's a big step for him to go to WDW again, and for me and his sister to take him there again, but I'm so anxious to go to WDW again myself, that I didn't even think of another solution: we could go to Disneyland Paris for one or two days as a "trial". It's just a 4 hour drive from where we live.
I will try to get some more insight on his anxieties, and talk to this therapist about it, and hopefully he would be willing to come with us to Disneyland Paris and maybe even next year to WDW again

Thanks

Hi Marleen2, my 18 year old was also diagnosed when he was 13, and went through a lot of the same things as yours has. He also went through the "not being seen in public with me" phase, but has grown out of that.

He is getting better now that he's through the terribleness of puberty, and is getting a lot better about his outbursts of temper too. Since he's high functioning, I could even leave him in the room (with his PSP) when taking my youngest out to the parks. Giving him the freedom not to go to the parks with us made him want to go to the parks with us. I don't know if your son can handle some alone time in the room, but for us it worked out very well.

I would definitely try Disneyland Paris first as a trial, to see if he's any netter than he was. I really hope that works out for you.

 

[Marleen2]

Hi Marleen2, my 18 year old was also diagnosed when he was 13, and went through a lot of the same things as yours has. He also went through the "not being seen in public with me" phase, but has grown out of that.

It's good to hear your son grew out of it. It gives me some good hope my son will grow out of it as well *fingers crossed*

He is getting better now that he's through the terribleness of puberty, and is getting a lot better about his outbursts of temper too. Since he's high functioning, I could even leave him in the room (with his PSP) when taking my youngest out to the parks. Giving him the freedom not to go to the parks with us made him want to go to the parks with us. I don't know if your son can handle some alone time in the room, but for us it worked out very well.

Yes, my son can handle some time alone as well. On our last trip, he went back to the room alone a few times when he didn't want to go along with us to e.g. the Nemo show or whatever he sees as the "kiddie stuff" that his sister and me did want to do. He knows his way around the parks, we use the Disney Transportation system so he knows where and which bus to get on. However, the times he did this, was at the point he was about to have a meltdown. I never thought of offering him the choice before going to the parks. That's a good suggestion, thanks

I would definitely try Disneyland Paris first as a trial, to see if he's any netter than he was. I really hope that works out for you.

I will try Disneyland Paris first, I hope it will work out. Thanks for your good vibes

 

[maburke]

I have no advice to offer, as my big boy is not anxious and my anxious boy is still small enough for me to pick up & carry off, but I wanted to offer hugs and support. Keep the thread updated with your experiences at Paris and Orlando. Good luck!

 

[Marleen2]

Thanks for your support
I will keep you guys updated

 

[Marleen2]

Just a little update: shortly after my last post in this topic, my son met up with a nice girl, and he's having his first relationship Thing are going quite smoothly (with their ups and downs, as in any relationship I guess). After 8 months, they're still together and we're starting to make plans to go to WDW next year... He will be 18 by then. I think the fact his girlfriend will be going with him, will make it a totally different experience for him... Hopefully they will still be together by then! *fingers crossed*

 

[SueM in MN]

Just a little update: shortly after my last post in this topic, my son met up with a nice girl, and he's having his first relationship Thing are going quite smoothly (with their ups and downs, as in any relationship I guess). After 8 months, they're still together and we're starting to make plans to go to WDW next year... He will be 18 by then. I think the fact his girlfriend will be going with him, will make it a totally different experience for him... Hopefully they will still be together by then! *fingers crossed*

Thanks for the update. That is certainly not the update I expected.
*fingers crossed*

 

[EvangelineG]

Congrats to your son on the girlfriend!

Can I just say that I can relate completely to what you described from your last Disney trip with your son? One of my sons has gone through the exact same thing, with my other son exhibiting some of the behaviours as well. Both have Aspergers. My son E, started with these behaviours quite young (everything is embarrassing, feeling like other people were constantly scrutinizing him almost to the point of paranoia, wanting nothing to do with anything "girly" and by extension mom), so we've been working on them for a couple of years and things are much better than they were. We are fortunate to work with a brilliant therapist, and here are some of her insights:

-our sons are highly observant, intelligent and sensitive. They are taking in all sorts of social information, but then don't know how to make sense of it.

-they worry that anything or everything might be embarrassing, because they don't know how to classify things as socially inappropriate or not. Like your son thinking the castle on the cup is mortifying, when we know that it would be typical and appropriate to carry a castle cup at WDW and no one would notice.

-casual sexism is developmentally typical for pre teen/teenage boys. Boys tease each other mercilessly for anything perceived as "girly". Our sons see instances of this, but can't sort through the intensity of the interaction from gentle ribbing to bullying, or the intensity of the trigger, such as: mild-going to the mall with your mom, and severely mortifying- wearing your sister's pink dress to school, so they try to protect themselves by avoiding anything remotely feminine. It really sucks when this includes any interaction with mom/sisters in public too.

-Aspie black and white thinking can rigidly define male/female roles, which takes the casual sexism of most teenage boys several steps farther. In order to feel like or become a man your son may have very specific and/or erroneous ideas about what he can and cannot do.

-painful self consciousness about what other people may think about him, shows a great deal of social awareness, and that's a good thing. He just doesn't have the "theory of mind" to actually guess correctly when it comes to what other people are thinking, and this creates all kinds of stress and anxiety.

What has really helped our sons has been systematically classifying different behaviours on an "Embarrassing Scale" of one to five. This way they have quantifiable information about how others might perceive a behaviour. And positive male role modelling concerning the anti-feminine behaviour (Dad, Grampa, BiL all actively teaching about male roles, acceptable behaviours, boundaries etc.).

As we approach our WDW trip, I am trying to coach my boys on the "girly" aspects of WDW. I can just picture the meltdown if one of the princesses were to stop and say hello. Hopefully with the coaching we'll be OK.

Anyway, I hope that was of some help. I know that understanding where on earth the behaviours was coming from was huge for us. Either way it's nice to know it's not just us dealing with these type of issues.

 

[ireland_nicole]

OT but- Evangeline; We'll be there the same time w/ our ASD DD- wonder if we'll be anywhere at the same time? My DD loves to meet other ASD kiddos

 

[Marleen2]

Thanks for sharing your therapists insights, Evangeline. It does help me understand better where his behaviour is coming from. I guess these were things I already knew, but someone else pointing it out makes it more clear for some reason.

Not knowing how to classify things as socially appropriate/inappropriate is the main issue I guess. I believe the classification on the "Embarassing scale" is a good I idea and might work well for your sons, but I guess they're younger in age than my son. Though it might be helpful for my son as well, I know these kind of excercises would seem "childish" to him, he's very reluctant to any kind of therapy anyway. We've seen several therapists but none of them seem to "get to him", y'know. The only help he's accepting right now is the special needs teacher who's helping him 2 hours a week with his school work (how to organise things, how to study etc).

What I do try to do is point it out to him what's socially appropriate/inappropriate by practical examples, eg. he had an issue with wearing his favorite Stitch T-shirt in public. When I saw a grown up man at WDW wearing the same T-shirt, I pointed out to him that it's totally acceptable to wear a T-shirt like that there, even for a grown up. I make him look at the people around that person so he realises no-one is making fun of that person, or is laughing about it. At that time he does get my point, but an hour later we might have a similar issue (well, for ME it seems similar, but for HIM it doesn't) and it feels like starting from scratch again *sigh*

It feels good to be able to talk to guys about it, knowing you're not the only one dealing with these issues is indeed very comforting

 

[EvangelineG]

OT but- Evangeline; We'll be there the same time w/ our ASD DD- wonder if we'll be anywhere at the same time? My DD loves to meet other ASD kiddos

Your DD loves meeting other kids?! No way! That's great! My sons on the other hand... I wish I could say the same, but in all honesty they would probably just consider it another stress.

I however, love meeting ASD kids! I'll PM you to see if our schedules match up at all.

Thanks for sharing your therapists insights, Evangeline. It does help me understand better where his behaviour is coming from. I guess these were things I already knew, but someone else pointing it out makes it more clear for some reason.

Not knowing how to classify things as socially appropriate/inappropriate is the main issue I guess. I believe the classification on the "Embarassing scale" is a good I idea and might work well for your sons, but I guess they're younger in age than my son. Though it might be helpful for my son as well, I know these kind of excercises would seem "childish" to him, he's very reluctant to any kind of therapy anyway. We've seen several therapists but none of them seem to "get to him", y'know. The only help he's accepting right now is the special needs teacher who's helping him 2 hours a week with his school work (how to organise things, how to study etc).

What I do try to do is point it out to him what's socially appropriate/inappropriate by practical examples, eg. he had an issue with wearing his favorite Stitch T-shirt in public. When I saw a grown up man at WDW wearing the same T-shirt, I pointed out to him that it's totally acceptable to wear a T-shirt like that there, even for a grown up. I make him look at the people around that person so he realises no-one is making fun of that person, or is laughing about it. At that time he does get my point, but an hour later we might have a similar issue (well, for ME it seems similar, but for HIM it doesn't) and it feels like starting from scratch again *sigh*

It feels good to be able to talk to guys about it, knowing you're not the only one dealing with these issues is indeed very comforting

Yeah, I figured your son was probably too old for the embarrassing scale, I was just really excited to come across someone dealing with the same thing. The beauty of the internet, I guess. It sure is nice to be able to share sometimes.

I totally get the "starting from scratch again"...and again. My sons don't generalize well either. So each variation on a situation has to be taught like it's brand new.

 

[Marleen2]

Yeah, I figured your son was probably too old for the embarrassing scale, I was just really excited to come across someone dealing with the same thing. The beauty of the internet, I guess. It sure is nice to be able to share sometimes.

Yes, it is indeed. Nice to know people truely understand what you're talking about as they're experiencing the same issues

 

[sharadoc]

@ Denise

As you mention, I'm sure that my son's (and probably your daughter's) anxiety has to do with puberty. All in all it's an age where every boy/girl is becoming very self-conscious, wanting to be just like everyone else and not stand out. Right at that age, my son got diagnosed with ASD. While they want nothing more than just to be like anyone else, they get a stamp on their forehead that makes them "officially different".

......

Puberty is really rough, made my DS stop talking in full sentences, much more generalized and social anxiety, even speech seems difficult for him now. His teachers promise that it will get better! Let's keep our fingers crossed. For now, WDW is the one shining beacon and he's always happy to go.