? about Aspergers as related to Autism (introduction also)

Sharon21

Hello, I have a 9 yr old DD who has Aspergers and ADHD. She has a lot of obsessions, is very sensitive to loud noises, is quite fidgety, and has a difficult time controlling her tone of voice. That is obviously the short list but those are what she struggles most with. She was diagnosed over 2 years ago now. She is definitely high functioning but as she gets older I see her becoming more "different" from her peers. She sees a councilor once a week and does cognitive training. 

Now to my question: I just found out that my church has a support group for parents that have children with Autism that meets once a month. It is tonight and I am torn about whether or not to go. Part of me wants to go but part of me says that I wont fit in. I know that asperger is on the autism spectrum but I feel so whiny complaining about my daughters problems when I am around people whose children can barely talk and such. I just feel like while aspergers and autism share some characteristics they can be very different also. I have never been to a support group before but think it might be helpful. Should I go? 

ToastieSimons

I don't think support groups are just about having someone to whine to.  It's about having a group of peers that you don't feel judged by.  Ones who when you're daughter has a meltdown don't give you the evil eye.  They can empathize when you talk about your child. 

I would go if I were you.  Try it once.  It may give you a new appreciation for other members of the church and may give you new friends who are even more understanding of your daughter, in a way that friends with NT kids can be.

lite-bright

If you're looking for that kind of support, then I'd at least give it a try. There is a huge range on the spectrum -- you may find some parents who are in a very similar boat, and some whose struggle is very different than yours. 

I went to a monthly dinner outing for our local autism society when my DD1 was first diagnosed (she's HFA). Because one of the society's staff members has a teen with both ASD and Downs, there were a lot of families there with teenagers who have both. I did talk to one young woman with Aspergers, and was able to relate to her somewhat -- but I was the only one with a high-functioning, young child on the spectrum and I was hoping to meet other parents in the same situation.

I haven't gone back to that particular group because it just didn't feel like a good fit, but we have attended the yearly picnic, where there was a greater variety of families with kids on the spectrum. I've found other parents through my DD1's preschool. Even if the specific needs are different, I've found that other parents of young children with SN are generally really supportive and speak the same language, if you KWIM. 

Sharon21

Thanks ladies for the replies! I didn't end up going on Monday because it was just to short of notice to make it work. But I am going to go next month and check it out. 

Auntie - your reply made me cry. It was almost like you knew what I was thinking! My DD just started fourth grade and she is really starting to pull away from the rest of the kids, it is much more noticeable now.  

"Some nights I had little in common- the mom with the non-verbal 6 year old doesn't want to hear me complain about my kid who won't shut up about his special interest and the mom whose kid flings feces probably can't relate to my pain over a birthday party to which every kid but mine was invited." 

This is what was running through my head as I debated on whether I should go. The part about the birthday party is what made me reach for a tissue, we have been there. I know a lot of Aspies don't care about fitting in but my DD does. She badly wants to be liked and can't figure out why she is "weird". I tell her she is unique. I think I may have to tell her she has aspergers soon... 

Sharon21

I think I have been living in denial about it. Logically I know she has Aspergers and she has a lot of the hallmarks but until recently I was still living in this delusion that she could be fit in to the normal box. But now that the gap is widening and she is really starting to see how different she is I think it is hitting me pretty hard.

We haven't told her because we didn't want her to be labeled. Like I said I was in some delusion that she could fit in without anyone knowing. I know if we tell her she will not be able to help telling other people and it is one of those things where once the cat is out of the bag there is no putting it back. I have such mixed feelings about it. I feel like once we tell her we need to be open to everyone knowing because I don't want her to have a stigma attached to the word. I don't want her to view it as something she has to hide and I don't think I have been ready to deal. I know it's selfish of me. Her therapist pretty much just supports whatever decision we make. I told her that I didn't want to tell DD and she said that was okay for now, and that was pretty much the end of the discussion. 

Oh, and your reply didn't make me sad exactly more like relieved that someone seemed know just how I felt.  

Sharon21

I agree with everything you said. You are right she is starting to get labeled by the other kids. Sometimes she even refers to herself as "weird" so I assume that other children are calling her that. The Aspergers being used is something that I have worried about in deciding whether or not to tell her. I don't want her to think she can use to as an excuse to misbehave and I don't want teachers to expect less of her because of it. But we told her teacher this year (we didn't last year) and so far she has been wonderful. We were clear with her that we didn't want her to expect less of our DD because of the aspergers and so far she has been really supportive of that. She is willing to do special things for DD but wont let her get away with misbehaving. 

Anyway thank you so much for your encouragement! Do you have any tips on how to go about telling her she has aspergers? Especially considering we have waited this long. Maybe I will start a new thread asking for tips on this.