Wednesday, July 22, 2009

do I need a second opinion?

After a very busy, and sometimes stressful family reunion trip, I have been wondering again whether Danny has autism. We had him evaluated two years ago and at that point, the doctor said that no, he is not on the spectrum. That his difficulties are caused by a global developmental delay. She assured us that his worrisome behaviors were part and parcel of this delay, not autism.

And I totally believed her. Completely.

Now? Now, I am just worried. I still believe Dr. R, but I wonder what if it was too early to tell?

I don't know.

Still, there are behaviors that are troubling to me. Sort of. The fact is, I don't know if the behaviors should be troubling or not. For example, Danny is still really into Baby Einstein videos, especially Baby Bach. Pretty regularly, Danny will sing the songs on the video. There aren't words to the songs, but Danny hums and sings the parts and imitates the sounds found in the video.

This seems odd to me. But, I'm not sure if it is a bad sign. After all, he doesn't get upset if you interrupt him and he doesn't seem to do it for soothing purposes. In fact, typically, he sings when he is writing or doing some other activity that is quiet. The other day, I asked him why he sings these songs and his little face lit up with a broad smile as he said, "Because it's fun!" This behavior probably wouldn't bother me if he were singing a song with words (which he has started to do now that we own the Dizzy cd) so is it really that big of a deal? I don't know.

He still quotes movies quite a bit, but typically it is with Charlotte when they are playing. They often adapt the dialogue from a favorite cartoon (lately, Franklin) to whatever game they are playing. Again, this does not seem to be stimming behavior. Rather, he is using the quotes in his imaginative play.

Another behavior that I am not sure about is that he has taken to writing. A lot. This has been good, because his writing and grip have improved immeasurably. The thing is, he will write for a good 10-15 minutes and usually what he writes is all the names of his favorite videos, which include all the Baby Einstein movies (including all the many he hasn't seen) Bolt, Franklin, etc. While the other behaviors don't seem to be ones that help him calm down, writing definitely does. Every so often, when he has had enough of sensory stimulation, he will sit down and practice his writing. And he is always so proud of what he has written.

Other than that, the only other area that worries me still is his social development. He continues to lag behind kids his age in this area. He prefers to spend time with kids he already knows, but he will sometimes try to play with others at the pool or park. The thing is, he doesn't seem to know how to go about getting kids to play with him. I can tell sometimes that he wants so much to be included, but doesn't know what to do. I have tried coaching him with minimal success, but I am sure things like this take time. He is developmentally immature for his age, but also he has had a lot of speech delays, which I know affects social development.

Sorry, I know I am just rambling here, but it helps me sort through my concerns.

I just don't know if I should pursue getting a second opinion or not. My sister, of course, says I should because she claims Danny will get more services. I am not convinced this is true, however, because he already gets speech therapy and help from a special ed teacher. I don't think he would get more services because he is not having problems at school.

I suppose getting another evaluation wouldn't hurt, but I am hesitant because I have heard stories about doctors who observe a kid for 15 minutes and hand down a diagnosis. I cannot see how this could be accurate. After all, my kid (and I am sure this applies to most kids) behave differently in many different situations. If Danny is diagnosed with autism, I want to make darn sure the person doing the diagnosis knows what he/she is doing. Because I don't want to be blogging this time next year about my doubts regarding his diagnosis.

What would you do?

6 comments:

susanlindgren said...

Does Danny have an OT? I trust OT over anyone-maybe that is because I have had some good ones :). I think another eval won't hurt. I think SPD, like autism has a spectrum

goodfountain said...

Here's the way I look at it Patty - an autism diagnosis (or not) in and of itself won't change the behaviors that you are concerned about.

What you have to ask yourself is ... what will an Autism diagnosis do for Danny that he's not already getting now? Charlotte HAD to get an Autism (Asperger's) diagnosis from the school in order to get the IEP. If Danny has an IEP that addresses your main concerns - then I see no need to get it.

If you think he needs further support at school, and you think an Autism diagnosis would help that, then I say go for it.

If a diagnosis would enable him to participate in therapies (like social skills groups) or something that he currently isn't - then go for it. However, I think it unlikely that a diagnosis is needed for that. Around here, the social skills groups do not require an official diagnosis (and that includes the ones at the big-wig Autism center).

Charlotte (mine) is like Danny in that she has a few autism traits (social and language related mainly) but not a ton. It's like ASD no-man's-land. A little bit ON the spectrum, a little bit NOT.

In Danny's case, unless the diagnosis would yield you (him) some sort of benefits, I see no need to go through it.

Email me if you want to talk about it further!!

Denise said...

don't we all come home from unstructured, overstimulating, no sleep vacations wondering if our children are a little out there? don't worry so much, danny is fine. i'll call you on thursday...welcome home!

Amy Jane said...

Patty - I totally agree with goodfountain! Get another opinion if you think that would benefit you, but if Danny's already getting therapy that addresses all his various "problem behaviors", then a diagnosis of Autism would just be an unnecessary label. I know how agonizing all of this must be for you. Well, I guess I don't really know, but I can imagine. You're the most amazing mom, and you're obviously doing everything in your power to help Danny. He's going to be OK, and so are you!

a Tonggu Momma said...

I agree with goddfountain! Do it if it's necessary, but don't bother if you think it won't benefit you in some way. The behaviors will still be there with or without the diagnosis.

What's interesting to me is that some of the behaviors you list are common in our house, too, including the Baby Einstein videos... and I think she does it to self-soothe when she is stressed. I have no concerns about autism, as you know, but she does have SPD.

Sarah said...

I am going to be the "other voice" (not that I am discrediting any of the other opinions because I agree with them all).

Having Danny evaluated by an OT is an excellent idea---OT's really have the best measure when it comes to sensory issues and figuring out what they "mean".

I would recommend having Danny re-evaluated but have it done by a "center" that will offer multiple sessions to evaluate each area. Little Friends of Naperville has an excellent evaluation programs that extends over 5 sessions with a ST, OT and psychologist. One of the interviews is done just with you and your husband so a comprehensive picture is established.

I know that you have an IEP in place and that Danny is doing well in school---but I am a firm believer in second opinions and being prepared if/when changes happen.

Lastly....there is a running "joke" about Baby Einstein videos---a lot of kids on the spectrum love them because they are visual. Does that make Danny autistic? Not necessarily. But if your gut is "uneasy" then listen to it. Emma will watch Baby Einstein and she is 9...Jack never cared for the videos. Both kids are on the spectrum--completely different personalities.

Let me know if you need anything Patty---