suggestions for child with AS/social anxiety disorder

[Kelly in IL]

We have been struggling to get a proper diagnosis for our 13 y/o dd. The medical opinion seems to be somewhere between AS and SAD. We are working with many issues, but the most difficult right now is understanding how to interact with other people. After years of training, we have finally taught her to try to look at people when they are talking to her, and most of the time now she will give at least a 1 word answer to a direct question instead of just staring at someone. However, she still has a difficult time smiling at people and still basically refuses to interact with other people, even people she knows, in any kind of group setting. She wants to go and sit at social functions (ie Girl Scouts and "Friday Night Hangouts" at church) but will not interact for the most part. Just wants to sit and observe. As a result, after several years of this behavior, people have given up trying to include her in what they're doing and just ignore her, and now she is starting to have her feelings hurt because she doesn't have any friends. No amount of patient explanation about friendship, etc., seems to help her understand that she needs to be willing to interact. For the most part she is fine one on one, but over the years even one on one has done things that have been surprising and inappropriate, and have made other kids not want to hang around her.

We are at the end of our rope and afraid for our child's future, both from the standpoint of being lonely and friendless to how she is going to function as an adult. I would greatly appreciate any kind of help from people who have had similar experiences!!!!!!

Kelly

[Misty]

Hmm... Nothing much comes to mind aside from a social skills group and gentle encouragement. Maybe you both could write up some sort of social goal or plan together... It could be as simple as.. "I will look at someone and say 'Hi' once a week" ... or "I will start a conversation with a friend once a month." Whatever she can handle and whatever she wants to do. Get her on board with improving her social skills... Explain why social skills are important. Get her excited about it. Once she starts meeting these little goals, her confidence will sky-rocket, which will then lead to more social interactions with friends. If she cannot improve her social skills, she will have a very hard time as an adult. I have Asperger's as do all of my children. I cannot work outside the home and I limit my social interactions greatly. I am very dependent on my husband.. He pays the bills, interacts with businesses, takes all the phone calls, etc. I cannot do anything like that. I will not even call someone on the phone unless I know exactly what is going to happen in the conversation and I can plan for it (mentally). I have hyperlexia, which comes with an auditory processing thing where I just cannot comprehend some things that are said to me verbally. I have to try very hard to comprehend and I have to have people repeat themselves a lot, which is embarrassing. So I am VERY dependent on my husband and I really don't know what I would do without him. I also still have trouble with eye contact.... Something I've been working on for years. If my husband died right now, I probably would not be able to get a job to support my children despite a college education. My ultimate goal is to help my daughters overcome their own Asperger-related issues so that they do not have to be dependent on their future husbands for the rest of their lives. I am very fortunate, but they may not be as fortunate as I.

I have one daughter (8yo) who is similar to yours. She will not look at people and she will not say anything when people talk to her. She has one friend (sort of) and is clueless in how to socialize properly. She was just diagnosed with Asperger's a month or so ago.

I'm wondering.. What's keeping them from giving your daughter the AS diagnosis? What is she missing from the DSM-IV criteria? Also, is she on an anti-anxiety medication? If not, I think it may be time to start one. I take SSRI's and they help tremendously! I have gotten over most of my social anxiety with the help of SSRI's. I still cannot approach people and I still do not make good eye contact, but I can interact with people that I know well and appear normal for the most part. SSRI's are a lifesaver for me!

[Laurie4b]

You are right to want to address this ASAP. A good social skills group should help. They are often run out of occupational therapists' offices or psychologists' offices. All the kids in those groups have a hard time so she will actually not be the "odd one out" in that group. But I would do it as soon as possible because this isn't going to get any easier and social skills are the most important skills for life--more important than academics, so I'd vote for finding a social skills group your number 1 priority.

[tammyinar]

Kellie,

I have 2 with AS and another with Social Anxiety Disorder (10yo ds). We don't have alot of resources where I live, so to some extent we have addressed many issues ourselves.

There are two books recommended on the St. Louis Institute of Behavioral Medicine site that we bought 2 years ago. My sister had taken her child there for treatment for SA, so I had a very good recommendation. My child who has SA now is the funny man in the family, always doing impressions and making people laugh. He can initiate conversations with others, adults and children. Issues are still popping up that have to be dealt with, but he is SO much better, and we have a plan that has worked for us and that we can use in future.

The books are "Dying of Embarrassment" ISBN-13 978-1-879237-23-0 and 'Painfully Shy' ISBN0-312-31623-2. They don't work miracles and they aren't easy. It was, on many occasions, heart-wrenching for us all. But he is much better, and he can function in society. When we realized that the SA was preventing him from doing the things he wanted to do, we knew we had to take action and we did.

Hope this helps you and your daughter.

[QValencia]

We have been struggling to get a proper diagnosis for our 13 y/o dd. The medical opinion seems to be somewhere between AS and SAD. We are working with many issues, but the most difficult right now is understanding how to interact with other people. After years of training, we have finally taught her to try to look at people when they are talking to her, and most of the time now she will give at least a 1 word answer to a direct question instead of just staring at someone. However, she still has a difficult time smiling at people and still basically refuses to interact with other people, even people she knows, in any kind of group setting. She wants to go and sit at social functions (ie Girl Scouts and "Friday Night Hangouts" at church) but will not interact for the most part. Just wants to sit and observe. As a result, after several years of this behavior, people have given up trying to include her in what they're doing and just ignore her, and now she is starting to have her feelings hurt because she doesn't have any friends. No amount of patient explanation about friendship, etc., seems to help her understand that she needs to be willing to interact. For the most part she is fine one on one, but over the years even one on one has done things that have been surprising and inappropriate, and have made other kids not want to hang around her.

We are at the end of our rope and afraid for our child's future, both from the standpoint of being lonely and friendless to how she is going to function as an adult. I would greatly appreciate any kind of help from people who have had similar experiences!!!!!!

Kelly


Oh my gosh, Kelly! I know I'm late chiming in here, but your daughter could be mine. Exactly. I've suspected for a while that she has AS but I honestly don't know what to do for her. I don't even know where to start, as in who to even go to to get tested.

I just wanted to let you know that you're not alone! If you make any progress, please please post.

Quincy

[amydavis]

We're going through this with our 8 year old ds. He has gotten a diagnosis of Asperger's. He is extremely HF and academically gifted, which was why we pulled him from public school (moved too slow for him). I didn't discover until the end of his last year in public school that he wasn't speaking at there at all! The teacher wasn't concerned, bc she thought of him as a smart and quiet kid, and was relieved to have one child in the class without behavior probs. At home and with people that are close family/friends he conversates normally. But at church, tap, etc, he hardly makes a peep. And when he does, it's so difficult for him and barely a whisper. The doctor is now calling it selective mutism. And from what I've read, any pushing just heightens the anxiety, which just worsens the situation. Sorry for the rambling reply, but your post just grabbed me bc we're trying to figure this out too. Good luck. Has anyone tried Social Stories?