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

[Marleen2]

My 17y old son has been diagnosed with ASD at the age of 13. Seems he managed to keep up somehow until then. The months before he was diagnosed, we've been through some tough times with him. His father and I got divorced a few years before, and he couldn't cope with the new home situation with his dad (with his new girlfriend and her three daughters). It just made him flip. After some tough months, I decided we all (he, his younger sister and me) deserved a vacation. He always loved WDW, we've been DVC members since 1999, so we're regular visitors.

I booked a vacation and thought it would do us all good. Boy was I wrong! Our vacation was a total disaster! It was there and then I realised you cannot "take a vacation from his ASD" but it was there to stay. Though we'd been to WDW 16 months before as well, this time it was a totally different experience. He had become extremely selfconsious and developed a social anxiety. Constantly being in fear of being embarrassed - What would people think about him, being there only with his sister and mum - what would people think about him when he was alone in the swimming pool, he felt "watched" - what would people think about him when wearing his (favorite) Stitch T-shirt, he didn't wanna wear it anymore - what would people think if they saw him holding a disposable cup with castle print - what would people think if they would see him at the Nemo musical... it was horrible... there was nothing I could say or do that would make him change his mind, and we ended up having a very stressed vacation.

The strange thing is that this anxiety doesn't show that much (or maybe he's better at hiding it) when he's with his dad or other male company. He doesn't want to go anywhere anymore with the two of us. Somehow being with him mum and sister seems be some kind of trigger for him and makes him feel embarassed for just about everything.

The next year he simply didn't want to go on vacation with us, so he went on vacation with his dad while I went to WDW with my daughter. We had a nice, relaxed vacation and mother/daughter time, and though it's hard to admit, to be honest, I was kinda relieved he wasn't there with us.

Still I'd love him to go with us again, but I have no idea how to cope with this situation. I just browse through the DISboards occasionally, usually around the time of our vacations. This year we have no plans to visit WDW but I actually ended up here to rent/transfer my points. But then I started browsing the forums again, and I really feel sad about the situation, he always enjoyed Disney so much and I'd love him to do that again. I miss my "Home away from home" and it makes me sad to think about it that maybe he will never come with us again.

I browsed the disabilities forum but didn't find any thread concerning this topic, so, my question to you is: did any of experience anything similar to my son's situation, and how did you cope with it?

Thanks,
Marleen

 

[JohnnySharp2]

Hi,

One thing you have for sure is people who understand.

We have an autistic, non verbal son who is now 14, naturally as any child gets older their autism I suppose becomes more apparent. Joshua will never be able to do the things that many teenagers can, and the older he gets the more we think and worry about it.

Obviously there are differences between our children, we have travelled from the UK to Florida many times and this April I think is his 7th visit.
Generally he copes well, with the occasional meltdown, but his patience levels have improved.
A lot of children , ours included, do not cope well in un-familiar surroundings.

In your situation I wouldn't give up on taking him with you, talk with him and show him places of interest on the Internet, show ohm more of what Florida has to offer, a day at the beach for example.

At the end of the day you know your boy better than anybody, but on here there are people who have similar experiences.

 

[bookwormde]

Unfortunatly most of our kids received no where near the level of social skills curriculum in school to develop full and effective intellectual compensitory social skills to allow them to function in complex and new social situation without damaging levels of anxiety. Many also have never really had it explained to them what the challenges and gifts are that go along with Autism genetics so that compound the issues, especially if the goal during their development was to make them "normal".

You need to ask why the differntial when you and your daughter are around, often it is a missunderstanding or some missing skill or amalgum of items which generate this specific anxiety.

With our kids it is like a neverending research study to support them since rarely are thing from what appears to be the superfical source.

Taking in slow when introducing new social and even physical enviroments is always a good idea, "pushing" is a recepie for disaster, encoraging is a far as it is effecitve to go

bookwormde

 

[Marleen2]

Hi,

One thing you have for sure is people who understand.

We have an autistic, non verbal son who is now 14, naturally as any child gets older their autism I suppose becomes more apparent. Joshua will never be able to do the things that many teenagers can, and the older he gets the more we think and worry about it.

Obviously there are differences between our children, we have travelled from the UK to Florida many times and this April I think is his 7th visit.
Generally he copes well, with the occasional meltdown, but his patience levels have improved.
A lot of children , ours included, do not cope well in un-familiar surroundings.

In your situation I wouldn't give up on taking him with you, talk with him and show him places of interest on the Internet, show ohm more of what Florida has to offer, a day at the beach for example.

At the end of the day you know your boy better than anybody, but on here there are people who have similar experiences.

It's good to hear there are people here who understand.

We're from Belgium so it's a long way for us to travel as well. (from the moment we leave the house until we're at the resort, it takes about 21hours, time difference NOT taken into account!)

Apart from the fact that your son is non verbal, I see a lot of similarities. My son also basically grew up with Disney as well, he was age 2 at the time of his first visit, and he visited WDW six times as well until now, plus several visits at Disneyland Paris in between.

The thing is that WDW IS a familiar surrounding for him. He always told it feels like a second home to him. From the moment we arrive at Orlando airport, he knows exactly what's going to happen. Take the monorail, head over to the Magical Express, drive over to the resort, check into the room - we always stay at OKW with him, so wherever the room is situated, they all look the same so it feels like "the same room" to him. He knows his way around in the parks, knows exactly where his most favorite attractions are situated. We use the Disney transportation system and he knows how to use it, I even let him go to the resort all by himself a few times, as he absolutely didn't want to do some of the things his sister and me wanted to do. (and I wouldn't let him do that if I didn't feel comfortable about it). So it really is a familiar surrounding for him. He just seems to have more and more difficulties dealing with the crowds, and is soooo worried about what people might think.
I found that being at the parks at the dark works well for him, there's less visual stimulation, and maybe he feels he's "less visible" as well?? but we cannot stay into the room the rest of the day

After our last stay, he said he didn't wanna go anymore, he says now it's "not worth the travel"

Maybe the GAC-card could help him next time to deal with the crowds, I never realised before that was an option for kids with ASD/autism.

I just hope he will want to join us again someday.

It's good to hear there are people who understand, I felt like I was the only one in that situation.

Any more tips on how to cope with the social anxiety are still more than welcome

Thanks

 

[JohnnySharp2]

Hi,

No you are definitely not alone, strangely enough Joshua is such an early riser that we tend to visit the parks early in the morning and rarely at night.

He certainly should not worry about what people think, though I appreciate that's not necessarily an easy message to get across.
Whenever Joshua has had a meltdown of sorts I suppose it's natural for onlookers to be curious, as parents we have learnt to ignore that.

Your boy sounds very sensitive, I honestly don't think that's a weakness of any kind, I would rather someone have feelings than the other way around.

Keep smiling and talking to him, I am sure it will all work itself out in the long run.

 

[Tonka's Skipper]

I do know a GAC card, you can ask CMs to show you the qiuet places when things are getting overwhelming.

AKK

 

[Marleen2]

Unfortunatly most of our kids received no where near the level of social skills curriculum in school to develop full and effective intellectual compensitory social skills to allow them to function in complex and new social situation without damaging levels of anxiety. Many also have never really had it explained to them what the challenges and gifts are that go along with Autism genetics so that compound the issues, especially if the goal during their development was to make them "normal".

You need to ask why the differntial when you and your daughter are around, often it is a missunderstanding or some missing skill or amalgum of items which generate this specific anxiety.

With our kids it is like a neverending research study to support them since rarely are thing from what appears to be the superfical source.

Taking in slow when introducing new social and even physical enviroments is always a good idea, "pushing" is a recepie for disaster, encoraging is a far as it is effecitve to go

bookwormde

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. To me autisme was "Rain man", I never realised my son would have a related disorder. Now, I don't know how on earth I could have missed the signs. I now think much of trouble he's going through now, could have been prevented if we had just known before, and if we could have provided him with the appropriate help at a younger age. But things are the way they are, and we have to handle them now.

Regarding the mum/daughter situation, I just assume he feels more comfortable in male company, being "one of the boys", but it might be just an assumption and maybe there's more to it than meets the eye. He'll be having a new therapist soon, so it might be worth looking into more closely.

 

[Marleen2]

Hi,

No you are definitely not alone, strangely enough Joshua is such an early riser that we tend to visit the parks early in the morning and rarely at night.

He certainly should not worry about what people think, though I appreciate that's not necessarily an easy message to get across.
Whenever Joshua has had a meltdown of sorts I suppose it's natural for onlookers to be curious, as parents we have learnt to ignore that.

Your boy sounds very sensitive, I honestly don't think that's a weakness of any kind, I would rather someone have feelings than the other way around.

Keep smiling and talking to him, I am sure it will all work itself out in the long run.

You and I know he shouldn't worry about what people think, but to convince HIM about that is easier said than done indeed. The odd thing is that whenever he has a meltdown and IS drawing all attention towards him (those are moments I would be embarassed if I were him) he doesn't seem to care about what others think at all

 

[JohnnySharp2]

You and I know he shouldn't worry about what people think, but to convince HIM about that is easier said than done indeed. The odd thing is that whenever he has a meltdown and IS drawing all attention towards him (those are moments I would be embarassed if I were him) he doesn't seem to care about what others think at all

I know that does seem strange, but he sounds like a special boy anyway.

 

[Marleen2]

Yesterday night I talked to him about maybe going to WDW again next year, and I told him about the possibility of the use of a GAC. I thought his reaction would be he wouldn't want that ('cause he would "feel watched" using it), but for the first time in a long time when talking about WDW he had a big smile on his face and he said "I'm not having difficulties with crowds and queues, but if I can have that card I wouldn't mind taking advantage of it"

 

[bookwormde]

I tell all the parnets to not waste energy on the past, as it is the educators and clinicians who are supposed to be trained and responsible professionals for identyfying our kids, they miss them all the time and worse yet once they are told, deny it and provide limited services, so as a parent how could we be expected to be the experts (although most of us become one after we are aware).

Have the therapist look deeper, I have found that positve attraction is rarley the source of major reactions (except as it realates to areas of special interest), more often it is a missunderstanding and/or lack of skill compitency and the assocciated anxiety in a particular area which creates this type of strong avoidance.

bookwormde

 

[JohnnySharp2]

Yesterday night I talked to him about maybe going to WDW again next year, and I told him about the possibility of the use of a GAC. I thought his reaction would be he wouldn't want that ('cause he would "feel watched" using it), but for the first time in a long time when talking about WDW he had a big smile on his face and he said "I'm not having difficulties with crowds and queues, but if I can have that card I wouldn't mind taking advantage of it"

That's great news.

 

[disneydenisel]

My ASD daughter, almost 12, has more generalized anxiety and OCD than social anxiety. We have taken four trips to WDW and it was only on our last one a few months ago when she actually got on more than one ride . Prior to that, we would spend the $$ on the tickets, and I would tour with her while my DH would go on rides with my son. She had generally been overwhelmed with every attraction, but thoroughly enjoyed just touring and looking and watching for a few hours, then returning to the resort via bus. There were some days when she would not go to any park, or days when she would run from the entrance.

This year, I had actually taken her out of public school the month before (could not stand the environment for her any longer, as it seemed like most of her anxiety was school-pressure-related), and I also increased her occupational therapy for sensory issues to once a week instead of every other week. She was a totally different girl at WDW this year. She rode on many attractions and was flexible and open to a lot of things . She didn't freak out standing in the FastPass lines, and she was usually pretty agreeable to try some new things. One of our therapists told us that by getting her out of the extremely stressful school environment, it calmed her down so that she could enjoy and experience life a little more. Well, we certainly had our best trip EVER, and I got to go on rides. I was in my happy place for sure!

Your son sounds like an amazing young man at 17 , and with a diagnosis at 13, it makes me wonder if puberty tipped the scale for his anxiety, which is why it wasn't diagnosed or apparent earlier. Our daughter's severe anxiety started when she began pre-puberty at around 8, and after reading a bit about PMDD (for girls/women--premenstrual dysphoric disorder), it sounds like my daughter's hormones are causing 95% of her anxiety issues. She has other issues...emotional dysregulation, OCD, social pragmatic speech--but the PMDD trumps all the others each month.

It sounds like your son is willing to go on that trip with a GAC, so that's great and it might be a really wonderful trip! I have just learned to have realistic expectations (1 ride for us) and be delighted with surprises (like 10 rides and character greetings!).

 

[Marleen2]

@ 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".

My son also had a lot of school related anxiety. Up till last year he went to a regular school. Though his school mates knew he was different somehow, they didn't really know what was going on, until someone found out he had ASD. He didn't want them to know. So ever since they found out about that, he felt bad about going to school, and he dropped out from school from February-June last year.
Since this year, he's getting special needs education, and he's doing a lot better since. Everyone in that school is there for a reason, several kids in his class have been diagnosed with ASD as well, and he feels much better now.

I can relate to what your daughter's therapist says that school is an extremely stressfull environment. I also believe that just going to school takes so much effort, that they're worn out once they get home. Good for you (AND for her and your whole family) that taking her from school earlier made her enjoy WDW more. It looks like she's more open to new things and I'm positive on your next trip she'll be open to more new things.

I'm hoping to take my son again next year, he seems to be open to the use of the GAC and hopefully by next year (he'll be 18 then) he'll have been able to cope with some of his anxiety issues

 

[Marleen2]

I tell all the parnets to not waste energy on the past, as it is the educators and clinicians who are supposed to be trained and responsible professionals for identyfying our kids, they miss them all the time and worse yet once they are told, deny it and provide limited services, so as a parent how could we be expected to be the experts (although most of us become one after we are aware).

Have the therapist look deeper, I have found that positve attraction is rarley the source of major reactions (except as it realates to areas of special interest), more often it is a missunderstanding and/or lack of skill compitency and the assocciated anxiety in a particular area which creates this type of strong avoidance.

bookwormde

Yes, we as parents become the experts after our kids get diagnosed. When we told my son's teachers, they could relate to the diagnose in that he was a very quite boy with limited socials skills, but that was as far as the understanding went. When I told them he often got meltdowns at home, and became very agressive sometimes (luckily almost always at home), they could hardly relate to that, as they knew him as a quiet boy, they really couldn't imagine him being agressive. It wasn't until he dropped out from school last year, and one day his teacher visited, wanting to take him back to school, he got agressive and threw his schoolbag through the living room. Actually I felt kinda relieved his teacher witnessed a meltdown like this, as I never felt being taken serious before.

In two weeks we'll be visiting his new therapist, I'll have her look deeper into his anxiety for sure

 

[bookwormde]

At his age "self awareness" (understanding his gifts and limitations and where they are derived from) is by far what I have seen generate the greatest benefits

 

[Marleen2]

Unfortunately, my son only sees the limitations so far. He hasn't come to terms with his diagnosis and so far has been very reluctant to any therapy. I'm keeping my fingers crossed that his new therapist will be able to get to him somehow. This therapist was suggested by his school and they seem to have very positive experiences with her, so... fingers crossed

 

[dntd]

I have an 11 year old almost 12 with autism ( also OCD,adhd,tourettes and sensory integration) . I have yet to be able to take him on a real trip as I feel he's unable to cope( us too). We love to camp but last year was a no go as the past year we went camping and he destroyed 2 expensive tents, took off alone,ended up in the lake alone, ate all our snack food at night, stole money to spend at the gift shop, took off at night. Enough was enough, when he was younger we figured it would get better but he's huge for his age and his behaviors are getting worse.He's not ready for disney, or any big trip though he really doesn't want to go, he wants to go back to a sleep away camp he had went to last year. Next year we hope that he'll be a bit better so we can take a family trip to Florida. Sometimes you need to access the situation to see if it's worth the stress, sometimes it is other no, disney can wait as long as we spend family time together it doesn't matter where we are( DS loves to fish, so we do that all the time. When he is ready he will be ready, he needs more therapy as he has had barely any as wait lists are super long.

 

[Marleen2]

@ dntd: Looks what you've been through with son on that camping trip is more than anyone would be able to cope with
So from what I read and what I see on your ticker I guess that he will be going on camp this summer and you'll go on a Disney trip with the rest of the family? Good for you. I know how this kind of behaviour can put a strain on the whole family. Though I know it's hard to leave him behind, the rest of the family is in need of a hassle-free vacation as well from time to time.

When I talked about that disastrous vacation we had a few years ago, this is one of the things that happened to us: One day while we were at Magic Kingdom, my son got a serious meltdown and he was becoming agressive (up til then, it had never happened anywhere except at home). He said he felt he had to punch someone. I tried to calm him down, wanted to bring him over to a quiet place where he could come to his senses and calm down. But he didn't want to. He just wanted to go on. As it was just at the time when the parade ended, it was very crowded where we were, so I just tried to calm him down, but it was no use. I said to him: I'm sorry, but if you really feel you have to punch someone, we will have to leave the park, as I can not take that risk. So we left, which made him even more upset. On our way out on Main street, he deliberately bumped into a young father with a stroller. While I was apologising to that man for his behaviour, my son punched me in the nose My nose was bleeding and hurt a lot (luckily it wasn't broken, but it was very sensitive until a week after).
While I went to the bathroom to whipe my nose and took my daughter with me, I ordered him to stay on a bench outside. It was the first time in my life I was afraid of him. Afraid that he might come after us, afraid of what might be happening outside. Luckily he stayed on the bench, but on our way out he kicked a garbage bin real hard, and threatened to punch a security guard at the entrance. I told him to think about what he was doing, 'cause if he would do that, he might be denied access to the parks for the rest of his life. Luckily no more harm was done.
(I do wonder what they would do if something like that would happen. I read something somewhere years ago where a drunken visitor got access denial to the parks for quite some time - does anyone know?)

Anyway, the year after we wanted to go again, and I talked it through with him thoroughly about wanting to prevent that kind of situations for our next vacation. I booked the plane tickets, I even made a reservation for a 1 bedroom (instead of the studio we're usually staying at) so he could have some privacy if he wanted from time to time and we wouldn't have to be together 24/7. But just a few months before leaving, he told me he didn't want to go along with us, but wanted to go on vacation with his dad. I tried to persuade him (as the plane tickets I bought were non-refundable, not changeable), but there was no use, he wouldn't go. Talked to his therapists about it, and they advised me not to push him to come along, as he would most probably ruin our vacation for pushing him, but just go alone with my daughter and enjoy the time with her. So we did, and we did have a very nice, hassle-free mother-daughter vacation. It was then I realised how SHE must be suffering as well from the situation with her brother, and SHE has the right to some hassle-free time as well. I'm glad I did that, and since then I try to take each year a small trip alone with her.

A long story to tell you that the rest of the family is entitled to some quality time too, without having to worry about the possible hassle, and we don't need to feel bad about that. We need the time and the chance to recharge our batteries as well.

 

[perugiagirl]

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!