Thursday, November 11, 2010

Asperger's Update

Remember I mentioned that Little Bean is being evaluated for Asperger's Syndrome, an Autism Spectrum Disorder? Well we are done with the evaluation process, now we are just waiting to go back and discuss the results with the specialist.

Little Bean spent about and hour and a half with the specialist where she performed some tests on him for autism spectrum disorder. Boy would I have liked to be a fly on the wall during that time! Then she spent another hour and a half with us interviewing us about his behavior at home and our concerns for him in terms of his development. The entire process was very eye opening. I felt like she got a pretty good sense of what we are seeing at home and also that she was able to explain some things to us that I had not really thought of or paid attention to in the past.

One of the things that I realized Little Bean really lacks is eye contact. He doesn't totally avoid it, but his eye contact is very fleeting and he doesn't have joint attention at all. He often shares things with me that he finds interesting or exciting, but he doesn't ever LOOK at me when he is sharing. For all he knows I could be reading a book and he wouldn't notice if I were paying attention or not because he doesn't actually look at me to see. Lacking joint attention is a red flag for autism spectrum disorder. An infant of about 15 months should be able to engage in joint attention.

Another area I had not really understood fully is his social functioning. He has always been shy and seemed apart from the other kids in group settings. Last night we dropped him off at Awanas and we watched him playing with the other kids through the gym window. It's amazing to me that I didn't pay attention to this earlier. He was comepletely out of sync with the other kids. While he did WANT to join in, he was just different. It's hard to explain, but to see it made it clear to me that he was not like the other kids. This went beyond being shy or hesitant, which is what I had always thought he was.

Since he was referred for testing, I've been paying a lot more attention to some of the signs that are markers for autism. Where before I thought he was just a quirky kid, now I'm seeing where there is a strong possibility that he is on the spectrum. Either way, the label doesn't matter so much as getting him the therapy and help that he needs, and that is why we have gone down this path. I'm all over the place in terms of how I am feeling about it all. I am glad we are addressing it now and getting him the help he needs. I'm upset that our pediatrician never asked us important questions about his development in these areas or showed concern about it. I wish there were simple screenings that could have been done earlier. There are times I'm upset with myself for not noticing the signs earlier, and there are times that I feel comepletely inadequete as a parent. I have always thought I was a really good parent--in the sense that I spent a lot of time and effort trying to raise them right--and I thought he was such a good kid because of my efforts. One of the things I'm realizing is that developmentally he was missing some of those important milestones that cause the difficult behavior--social reciprocity mainly. He has always been very willing to play on his own for long periods of time--even hours when he was a baby (like 12 to 24 mo). He would sit and read alone, not bringing things to show me or asking for help with things. Also since I really would like another child, it worries me because statiscally if you have one child with ASD the chances are higher that the next child will have it. Miss O doesn't seem to though she is shy, she does have joint attention and is very social and intuitive when it comes to socializing and fitting in. I'm also tired of being in limbo, so to speak, not knowing whether he has it or not, and if he doesn't what IS going on with him.

If would like to see some interesting videos comparing typical children with those at risk for ASD, please go to and sign up to see them. There are some really good ones on joint attention and repetitive behaviors/speech (which Little Bean does have after all). Also, I am participating in Autism Speaks Walk for Autism in Southern California this weekend on November 13th. If you live nearby and would like to walk with us, you can join our team here. Or, if you would like to donate, please visit my personal page here and see how you can help fund more research for Autism Spectrum Disorders like Asperger's Syndrome. Learn more about Autism Speaks here.

Anyway, sorry for the rambling! We go on Tues to speak again to the autism specialist, so probably will know for sure by then.


Lori said...

Just read your post for the 100th time. Wish I had advice, wish I had experience so that my words would not be empty. However, I would say that you should not beat yourself up over the signs that you might have missed. You are a good parent for loving and caring for your children. You are a good parent for taking your son for the testing. Now is not the time for regrets and looking backward. You have a brand new diagnosis (possibly) that is huge and can be overwhelming. You have too much to look forward to-learning, helping, laughing, learning, tears, understanding, watching your lovely son grow to be a worry about the past. You are doing a great job. Work with any news you get as far as a diagnosis. Embrace it, cry, hate it, cry some more, and then be thankful that you know how to best help your son now.

Lori said... comment was meant to be encouraging and loving (even though I don't know you) not hateful or condescending. I hope it reads that way....

MamaBearsCubHouse said...

i am at the beginning stages of asperger discoveries..what to do, when, why, etc.. all those confusing, overwhelming questions.

my heart goes out to you. rambling, venting, letting it out, sharing helps me. i hope it helps you on this journey, too.



S Club Mama said...

I am so sorry your pediatrician didn't say something! I am so blessed ours was one of the first to say something.
Reading these posts are so refreshing for me. I can't thank you enough for sharing.

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