New Asperger's Diagnosis

[Stephenie]

My son had an evaluation with a developmental pediatrician earlier today. He said that he's 99% sure he's on the spectrum and would place him under Asperger's. We're following up later this month and will solidify the diagnosis, but he said he was pretty convinced that was what we are dealing with, but wanted to have a sit down with us and talk about it. He gave me the info for group that does ABA and social skills classes for kids on the spectrum. He also said that he wants to do an IQ test later on to see if DS is gifted (something we've suspected anyway)

I am not surprised, but am overwhelmed a bit. If that makes any sense. I've suspected AS for quite a while, though I thought we would not be able to get that particular diagnosis at this age. I guess he said looking at our list of concerns was like looking at a description of Asperger's so he felt pretty sure that was the right part of the spectrum for him.

Does anyone have any advice on books/ websites about Asperger's/ ASD in general that may be helpful to me? 

Also, any advice on telling everyone? With his SPD diagnosis, we were able to  slowly let it out as needed/ as we saw people and it felt right. Since then, we have moved across the country. I in no way want to hide that DS has Asperger's, but don't really know the best way to tell people. I've only told my mom and two friends who knew I had the appointment so  far. My mom reacted better than I ever thought. When we got the SPD diagnosis, my folks were kind of odd about it, thought SPD was fake, we were wasting money on therapy- with this she was great. She said she "could see that" and that she watched a TV show about Asperger's recently and "Even one of the Miss America's has Asperger's". I am guessing most of our family and friends will be supportive. But calling everyone sounds overwhelming. Making it a facebook status seems way off. Though I regularly post about SPD and post articles about it etc, trying to help my family understand DS better... I don't know. I am going back to our home state with the kids for ten days tomorrow, so I could try and tell a lot of people face to face. 

Anyway, thank you for reading this and for any advice you may  have. 

[Emmeline II]

I don't see why it has to be a big announcement. We have an appointment with a developmental ped next month. Dh will probably discuss the appointment with his mom that day, I'll probably wait until I next talk to my mom. I will probably talk to his teacher and the special ed coordinator if we have information that is new/different than what we already know.

When ds' behavior was "bad" it felt necessary to explain why, but right now he is doing very well between his therapy and medication and it doesn't seem necessary to "expose" him like that. Not wanting to broadcast personal information is not "hiding" it.

About your reaction, I think most people feel that way; relief that issues are identified and you can make a plan, and worry about the implications for the future.

[Linda on the move]

I've never made an announcement. It's not a secret, but it is on a need-to-know basis.

I suggest only telling those people who you want to talk to about it, people you know will help you process.

[Stephenie]

I think where I am stressing is just the timing with the visit to family less than 24 hours after the diagnosis. His behaviors are worse by quite a bit than the last time they saw him, so an explanation would be good in a lot of ways... so I feel like telling people may be good. I also feel like, since I told my mom about the appointment before hand and told her the result of the eval, I should tell the rest of the family so she does not need to feel like she's keeping a secret. At least my dad and brothers.  But it really does not need to be an announcement, you're right. I am still processing this all at this point in time and trying to sort it all out. 

[Emmeline II]

Originally Posted by Stephenie 

I think where I am stressing is just the timing with the visit to family less than 24 hours after the diagnosis. His behaviors are worse by quite a bit than the last time they saw him, so an explanation would be good in a lot of ways... so I feel like telling people may be good. I also feel like, since I told my mom about the appointment before hand and told her the result of the eval, I should tell the rest of the family so she does not need to feel like she's keeping a secret. At least my dad and brothers.  But it really does not need to be an announcement, you're right. I am still processing this all at this point in time and trying to sort it all out. 

I agree that the timing isn't great. Perhaps it would work if your mom told your brothers, and you could talk to them later if you feel they need a more in depth conversation.

[Linda on the move]

I agree about having your mom talk to dad & siblings.

Take care of yourself and give yourself time to process. Let your friends & family know what they can do to help, such as being mellow about your sons behavior but not making everything and every conversation about his dx.

My favorite book as a starting point is:

Quirky kids understanding and helping you child who doesn't fit in by klass

I also like anything by Temple Grandin. She has autism and is functioning , successful adult. She gives me hope.

[babygirlie]

I guess I'm just a proud mommy so I email everyone every time she twitches lol. Not many respond back so I should quit but she's just so darn cute and I don't have parents to brag to. I did make a special group on facebook that is private and when I post there ONLY those particular friends can see it.. like pics  and updates. My farmville neighbors don't need to know about her. The pics don't show up in your gallery or anything. I just don't feel comfortable, myself, posting info on her for the public. People seem  very supportive even though I'm sure they don't totally understand.

One of my friends is a teacher and he has several autistic kids in his class that he said he would never had known if they hadn't told him. I found that comforting hope.

I also find it really awkward when people talk to her at certain offices or at the store and she won't look at them or acknowledge them. I kind of blurt it out stumbling on my tongue the whole way um she's kinda autistic so she may not look at you. they always say that's fine and keep on talking to her :)  One lady that I DIDN'T say that too was about standing on her head in toys r us trying to get her attention.. boy that felt weird! it's like give up! Go away! You're making us feel weird! lol  So I'm still trying to figure out the right thing to say in those situations too!

[Stephenie]

I got to my home state late tonight. Though I had not had time to talk to my mom about it, I can tell she told my dad. Which is fine. I can see it all sinking in for him. He was asking a lot of questions about how DS plays with other kids and when I shared a story about him (That he out of the blue said "Dogs can't take catnaps") my dad said "He really is a very literal thinker isn't he?" So I am pretty sure he'll come around just fine, he just wants to understand a bit. 

I'll ask my mom to go ahead and tell my brothers if she hasn't. It will make it easier.

Babygirlie, I am similar, I am always telling everyone I know everything about my kids. I am an overly proud mama lol. So that's where it's hard to not be sharing this with everyone, because it feels like because I share everything else, it's like I am hiding it a bit. 

I've had similar experiences at the store. Why on earth is it such a big deal to get random kids to look at you? One time, at the grocery store, an employee was helping me out with my groceries and he sent my son into a full meltdown with his insistence that he look at him... uncomfortable for everyone. 

[Emmeline II]

Originally Posted by Stephenie 

I got to my home state late tonight. Though I had not had time to talk to my mom about it, I can tell she told my dad. Which is fine. I can see it all sinking in for him. He was asking a lot of questions about how DS plays with other kids and when I shared a story about him (That he out of the blue said "Dogs can't take catnaps") my dad said "He really is a very literal thinker isn't he?" So I am pretty sure he'll come around just fine, he just wants to understand a bit.

One thing that makes Asperger's Asperger's is normal cognitive development, which can be confusing to some people--"but he's so smart!"

The following is an article for grandparents I found
 

Especially for Grandparents of Children With Asperger Syndrome
By Nancy Mucklow
http://asdrendrewolf.org/apovonautism/letter.php

This one is kind of an Asperger's summary and differentiates between Asperger's and classic Autism.

http://www.aamft.org/families/Consumer_Updates/AspergersSyndrome.asp

You could also ask your doctor if he has any booklets that would help; I received a couple of helpful ones when ds was diagnosed ADHD.

Originally Posted by Stephenie 

I've had similar experiences at the store. Why on earth is it such a big deal to get random kids to look at you? One time, at the grocery store, an employee was helping me out with my groceries and he sent my son into a full meltdown with his insistence that he look at him... uncomfortable for everyone. 

I tell ds that he doesn't have to look at them, or just redirect the attention of the employee.

Edited by Emmeline II - 1/7/11 at 6:07am

[Stephenie]

Thanks very much for the links, I will be forwarding them to my parents today. 

[mrsfru]

I forgot the name of the book/s, but the author is Tony Attwood. Excellent reading.

Generally, I tell people who know ds well enough to spend a significant amount of time around him, or in situations where others knowing will *benefit* ds.  I want people to understand him and help him, not label him as defiant or dumb b/c he doesn't "comply" readily.

Best wishes!

[Stephenie]

Thanks I will check out that author.