How & when do we tell DS he has AS?

[Taratink]

My DS7 has just been diagnosed with Asperger's Syndrome. We have been trying to find answers for 4 years. We have had so many bad diagnosis and awful med. trials. We have not mentioned it to him yet. He knows that he is different and special. Do you tell them when they are so young?
I was thinking that getting a GAC for our next trip. Will it be hung around his neck or can I hold it? He is high functioning but has days where he rages and breaks down. Our last trip was really hard. He would wait in line the whole time and when it was our turn he would be so anxious that he would panic and want to leave. The GAC card would help if he was having a hard time.
Please be gentle with your comments. I am not ashamed of him or anything. It is just so new. I really don't know what to do with this diagnosis yet. It has been a relief to find out that he has AS. Now our family members know that he has issues and that he is not trying to be difficult. Maybe everone can cut him some slack. It is easier for me to understand him now and somehow through all this it makes me love him even more. I am just afraid to do the wrong thing.
Tara

 

[LindsayDunn228]

Just FYI, the GAC is not a scarlet letter.

 

[Taratink]

Yes, I understand that. I have not talked about it with him yet. Having a sign on his chest telling everyone he has a disability and not telling him seems like a bad idea to me. I knew that I would get a sarcastic and unhelpful comment. If anyone has any helpful and caring advice I am hear seeking help. Thanks
Tara

 

[minkydog]

My youngest child is very low-functioning, mentally handicapped and autistic. He could give 2 hoots what anybody thinks of him. We call his labels what they are, but we don't make a big deal out of them. My oldest son is severely ADD and "on the spectrum"(SID issues, depression,etc) He is very sensitive to criticism and perceived slights. We had to really get ourselved together before we could help him accept his disabilities.

It's very hard to admit when your child is different, even though having a diagnosis is a huge relief. The first thing any parent has to accomplish is acceptance of your "different road". You have to grieve the loss of an unimpaired child before you can accept the one you have. So I would suggest that you take the time to reach a state of equilibrium yourselves. Then I think you can start opening the conversation with your son. If he's old enough to know he's different, he's old enough to know why. No need to keep secrets.

Good luck. I'm glad you've finally found some answers. I know what a great relief that is.

 

[Taratink]

My youngest child is very low-functioning, mentally handicapped and autistic. He could give 2 hoots what anybody thinks of him. We call his labels what they are, but we don't make a big deal out of them. My oldest son is severely ADD and "on the spectrum"(SID issues, depression,etc) He is very sensitive to criticism and perceived slights. We had to really get ourselved together before we could help him accept his disabilities.

It's very hard to admit when your child is different, even though having a diagnosis is a huge relief. The first thing any parent has to accomplish is acceptance of your "different road". You have to grieve the loss of an unimpaired child before you can accept the one you have. So I would suggest that you take the time to reach a state of equilibrium yourselves. Then I think you can start opening the conversation with your son. If he's old enough to know he's different, he's old enough to know why. No need to keep secrets.

Good luck. I'm glad you've finally found some answers. I know what a great relief that is.

I really dislike secrets. I need to find the correct way to tell him. My husband reaction to the news surprized me. He was so angry when he found out. When we researched AS everything made sense. It was so obvious and so many doctors missed it. We wasted so much time. After my DH vented for a couple of hours he was giggling. He said that he felt free. We now know what we are dealing with. We need to create a plan. We have finally figuered out what it is. Now what do I do next. It took a lot for me to write this thread. It is me telling the world so I am really sensitive. My son has AS and he is a wonderful and beautiful person. Thanks for your thoughts.
Tara

 

[LindsayDunn228]

Yes, I understand that. I have not talked about it with him yet. Having a sign on his chest telling everyone he has a disability and not telling him seems like a bad idea to me. I knew that I would get a sarcastic and unhelpful comment. If anyone has any helpful and caring advice I am hear seeking help. Thanks
Tara

What I was saying is you don't wear the GAC around your neck, like a scarlet letter. His disability won't be advertised like that. It wasn't a sarcastic comment. Relax, take a deep breath, and realize no one is out to get you. Sheesh.

 

[Schmeck]

I think you should just tell him - he must wonder what all the testing, meds, and appointments have been about? Tell him that the doctors have been trying to find a way to help make it easier for him to be happy and to have fun.

Make sure he knows he's done nothing wrong, and that he's not "sick", but that mommy and daddy want him to feel good about himself, etc. Talk about the difficulties he has, and how the doctors are trying to find a way to make it easier for him to have a great life.

You know your son the best of anyone, so just play it by ear - if he seems satisfied with a simple answer, and he doesn't have any questions, I'd just let the topic go for a while too. Just let him know he can come to you with his questions about it whenever he wants to!

 

[Tinker*Shell*Bell]

I was in the same boat as you just 5 years ago. My 7 yo son (at the time) was Diagnosed with AS and it took a huge load off of us too. I know EXACTLY what you were feeling when you say you felt "Free." That feeling of "I knew there was something different about Matt, I know what it is and I can work with what I know." The search for a diagnosis and all the false starts just fade away and a weight is lifted from out shoulders.


Matt always knew he was different but telling him there was a word for it, and that other people had the same problems was tough. He was young like your son is and he didn't want to know much about AS. Someone recommended this book to us and we used it to start a conversation with Matt.

I think our first words on the conversation with Matt were: "Hey Matt, you know how you say other people say you're weird, I think I might know why they say that...." (this might sound odd, but he knew he was different)

He didn't really want to hear a lot about it at first, so we looked at a few pages then put it down for a week, when we picked it up and did a few more pages he was more into knowing about it, but in an embarrassed way.

This book has also been recommneded to me, but I didn't get it because I honestly forgot. It is a workbook format designed to be used by the child (with help) to discover more about AS and how it affects them. It seemed nice but not what Matt would want. It might be great for the next child though.

We never mage a BIG HUGE deal to Matt about Aspergers. He did like that it sounded like a$$ burger. That gave his Aspergers mind quite a twist, he is so literal he was probably seeing someones butt cheeks on a burger bun. He is often telling me the pictures that his head makes to weird word combinations. It's like a window into how his mind works.

My best "been there done that" advice is don't stress out about it, don't make it a big deal, don't make it a high pressure situation and everything will be fine. The thing that constantly amazes me with my Aspergers child is his ability understand himself and work on changing what he is not happy with. It takes him years longer than other kids to "get it" but he is finally able to move forward. The Aspergers is still there and he knows it, but he is learning tricks to cope and even more tricks to appear "normal" to his peers.

Tons of luck and love from Maine, if you need to talk more PM me, i really understand where you are!

(The GAC can be carried by you or him. Matt loved carrying his and at 11years old last trip we used it as a way to get him to talk to people. If he wanted to use it he had to say so.)

 

[Taratink]

Thank you Tinkershellbell. Your son sounds like a funny kid. My son also has a great sense of humor. It is nice to hear that your son is doing well. I will get the book that you talked about.
I know that I just have to be straight with him. It won't seem real to me until he knows. Maybe he will fell free and lighter after he finds out too.Thank you so much. Your thoughts are refreshing.

Tara

 

[tw1nsmom]

No real advise here, just a hug .

DS is 6. He has Nonverbal Learning Disability. I haven't specifically told him his diagnosis. At the moment, he doesn't seem to have self-awareness that he's "different". It makes it harder to figure out a way to discuss it with him.

 

[melomouse]

Hi Taratink -

Thank you for having the courage to post and to try to get the input you need. My AS son will be 15 in January, and was dx'd when he was in 2nd grade - 7 or 8.
I'm sure you've already tried(pre-DX) to talk to him about the meltdowns or being different, or whatever you bring up. It is a tremendous relief to now have a name that explains some of those events.

I think I explained it to my son by way of exploring the concept of "uniqueness". Asperger's is one of HIS special traits - just like DD has eczema, Gabe is "hyper", Jill has kinky hair, etc. DS's "Specialness" creates problems for him in class sometimes and in getting confused about people's comments and expressions.

Imagine my bittersweet joy in recent months as I overhear him communicate this to his peers, to the doctors as he went through spinal surgery this past summer, and even to CM's @ WDW a few weeks ago: "I have Asperger's - so sometimes I get worried about things other kids don't even notice. And sometimes I say inappropriate things...."

As for the GAC - we just returned from our 6th trip - and it's only the last couple of times I even HAD a GAC. He's better in WDW than anywhere "outside" here at home! That said - I carry the GAC handy in my purse - and I announce when I am presenting it and why. He's at the age where he sometimes thinks it will get him advantages that he doesn't need because he has AS, but because he's being a teenaged pain!!! I anticipate "meltdown" occasions and stop them before they start - hopefully. The frequency of meltdowns has also dramatically decreased with the onset of adolescence - maybe monthly now and always when he's totally wiped out and vulnerable.

If there's anything I can do to help, please just ask! I'm with you!!!

 

[Taratink]

Melmouse-
I have been hearing a lot of people saying that their kids were diagnosed around age 7. This is such a unique disability. When I read the characteristics to my MIL she asked if they wrote it about DS. It was so spot on. His 1 st grade teacher says that he is a dream. His Kindergarten teacher had a really hard time with him but she was quite fond of him.I met with the 1 st grade teacher to discuss our findings and she was amazed. She didn't pick up on it. She described how he is big on following the rules and how he hands her the quiet bell when the noise level gets too high. The teachers also thinks it is cute that he memorized everyone's birthdays and lines the kids up according to there birth order. These quirks are what makes him loved by the teachers. I know that these things consume him and make life hard for him. It is not easy living life when everything has to be just so. He is always on and becomes exhausted from his obsessions. We are lucky that he is so high functioning. Thank you for sharing your kind thoughts with me.
Tara

 

[diswish]

Tara,
I also have an Aspie son dx'd in third grade along with Sensory Integration Dysfunction and Tourette Syndrome. He's 15 now and doing great! Here are some strategies we used when we told him.

We pronounced it Awsbergers to avoid some of the teasing when he was ready to share the info with others. For a few years he referred to it as "that hamburger thing I have". We used this term to include all the sensory needs, vocal and motor tics he had.

I used the road map method to describe AS. The brief version: your peers go from A to B to get there. You take a few extra turns and detours - A to C to E to D to B - you end up in the same place but it takes a little longer to get there.

He had a great teacher in 4th grade who taught his classmates to identify for him the times when he was not acting socially appropriate (Z, you are standing too close to me and it makes me uncomfortable). This extra modeling really helped him learn social skills. We also used Comic Strip Conversations when there was a problem to find out why he did something wrong. It was very enlightening and led to better responses from the disciplinarians at school. In 7th grade, I went in and talked to the class about AS, what it was and how they could help. Within 2 days he came home and told us kids were saying hello in the hallways and talking more with him. Trust me, this was huge! We always told him this explained why things were harder for him, but it was never to be used as an excuse - everyone has something to deal with. His job was to learn how to live with it.

OK, more info than you probably wanted. The journey can be difficult at times, but the unique outlook on life these kids have makes it fun too! Tony Atwood's book is a good place to start for day-to-day strategies. Good luck!

 

[Taratink]

Diswish- my son had a lot of sensory issues when he was younger. He has grown out of some and we have adjusted to a lot of it. He has been doing really well the last few months on a new med (tenex). The last 3 days have been difficult. He has started touching and poking again. He gets obsessed about disliking his younger sister. It is just so much work doing everyday tasks with him. I feel worn out. I have a feeling that he is getting away with a lot at school. The teacher says no but he tells me little things that he is doing. He will sing like a canary if I ask him the right questions. I need to get him some help. He wants to do playdates but he is a nightmare. He always gets super hyper and meltsdown when we leave. I don't know.
Tara

 

[Belle1997]

The GAC is a square card red and white. On it it has what the special need is. ( It has symbols that are stamped on ) Like can use wheelchair exist, so they are not in a crowd. When I wore mine I had a pouch that was clear on one side so the card could show and black on the other when I did not want to show it. It would be very hard to read it unless up close. And if you are sensitive for him just tell him the card is to help him not have to wait with alot of strangers. That he may still have to wait but nicer because it will not be so crowded.

I too have an AS step son and he was never diagnois officially. They missed it all the way through school. And my DH has a lot of the symptons too. He hates crowds and thus we never go during a busy season. Because if we do I go with grumpy all day .

 

[SueM in MN]

We get a GAC for our youngest DD, but often don't have to use it at all. By using Fastpass and knowing when things are busy, you can avoid a lot of waits (even during really busy times like Spring break).

If you haven't read the disABILITIES FAQs thread yet, I'd suggest you check out the information about GACs. And, as the others suggested, keeping it in a handy pocket in your purse or in a pouch with only one side visible are good ways to 'store' it.

I have a nephew with AS. I know when he was diagnosed, he was very relieved to have a name for what was 'different' about him. He had known for a long time that he was different, but he didn't know why or what. He just thought he was not as smart in some ways as his peers or was 'bad'. So knowing he had AS was a BIG relief for him.

Exceptional Parent magazine ( www.eparent.com ) has a pretty good library of books on all sorts of subjects to choose from. E Parent Library
My sister loaned me 2 books that she highly recommends (but I can't find them right now) When I do find them, I'll post the titles.

 

[karynnix]

My son was diagnosed with AS at 7, also. I have never actually sat him down and told him "You have Asperger's", because frankly, I don't think he would understand at this point. I found a very good book by Echo Fling called EATING AN ARTICHOKE. It is a mother writing about her son with AS. Honestly, I could have written the book. AS kids are amazing when you start realizing what is going on. Once you understand him and learn how to deal with him, it won't be an issue. Jack knows that he needs some help sometimes, but he is so special. He knows that he takes a pill everyday (Paxil) so that he's not "all crazy" (as he puts it). I treat him and my daughter as much the same as I can and I try real hard not to single him out. So far, it has worked for us. He will start questioning one day, and I'll be ready when he does!

 

[belle&beast]

I'm so glad you have some answers! I am a speech pathologist in a preschool at this time, but I have worked with school aged kids as well. If your DS will understand, then by all means tell him and teach him to explain it to others when necessary. Another poster said her son can explain why he acts the way he does and I think that is wonderful! My cousin has a son with AS and he tells people about AS and it has really helped him socially. Another idea is to ask your speech pathologist at school if she has any social stories regarding AS, this may be a great way to bring up the subject with him.

 

[LindaDVC]

My son's main diagnosis is ADHD but he has quite a few other labels too.
Labels are just that a way to get the right help, but each kid is unique and needs what works for them. Telling him his strengths and special needs might be enough -- for other kids they want more detail and a diagosis.

As I struggled with my son's knowledge -- I found a great book about a hyperactive turtle -- after reading it together I asked my son if he knew anyone that active and busy he replied "YEAH the turtle we just read about !!!" He didn't see the similarities at all!!

When he was older he had questions but the child will guide how much they need and want to know and WHEN!! As a parent be available and ready to answer honestly and openly. As parents we can grieve for our kids problems even as we love them unconditionally and always will!
Hang in there and have a wonderful trip!

Linda

 

[Foohound]

I have a DD age 5 with a DX of autism, I have a 7 year old nephew with AS. My sister and I greatly disagree with our methods and approaches to it. I choose to face it head on and not hide it from my DD. My sister has hide it from my nephew since his DX at age 6. She has even hide his medication in his food, so he would not know. My DD just came up to me last week and said "mommy is there a Mickey Mouse like me?" I asked her what she meant? "I mean different like me? I know I am different mommy and that's ok. I like being me!!!" That was the greatest gift my child could have given me. I know now that sharing this information with my DD and letting her know it's O.K. to be different was the right choice.

I hope this helps.