Questioning ASD diagnosis?

nicolita14w

My son (almost 3) was diagnosed with PDD-NOS in November. I saw the diagnosis coming as I have been worried about him for a long time. He has had language delays, gross motor delays, sensory sensitivity, obsessions with certain items (like flags), social impairment, among other things.

However, very oddly, almost since the week we got the diagnosis, a number of his concerning behaviors seem to have stopped. He doesn't seem as obsessive about things, he's started asking questions and doing more imaginative play, His daycare teachers report that he's interacting more with the other kids. etc. Is it normal for symptoms to come and go? On the one hand, I want to be happy that he's making progress. On the other, I'm worried that it's a fluke and he'll regress. And now I'm questioning the diagnosis, and wondering if he doesn't really have it. It's a little maddening. It's not that I *want* him to have the condition, but I just want to know what's going on one way or the other! 

lindzed

It happens to me all the time.  We have only had the diagnoisis for 4 months, but I will say 50% of the time I'm convinced its just wrong and the other 50% of the time I'm convinced the diagnoisis is completly right.  I even considered going to see another developmental Pedi and having another evaluation done.  In the end, I realized I needed to quit spending so much time worrying about a diagnoisis because it was simply exhausting and there is more important things I need to be doing.  For me, what has helped is realizing that I would do the same things I'm doing now regardless of if he had Autism or not.  That mean that I've quit searching for every possible "cure" for Autism and started focusing on how I can encourage great things about my son and help him strengthen his weeknesses.  Another thing that I do is pay very close attention to what is happening in our lives when Adam does well.  I then take those things and try to figure out how we can get more of that in our life.  This means focusing a lot more on play and sensory issues for Adam (they really help him have more language and be more engaged) and cutting back on some of the things that are harder for him (parties with lots of people, preschool, "typical" speech therapy).  I think for every child its totally different, but this has really helped me worry less and I think has helped Adam be a happier kid.

MirandaHobbes

This happened to me as well (ASD diagnosed at 20 months). At first he made great strides, starting talking a lot more, pointing, eye contact- basically all of the things they said he wasn't doing before. Even now, DS is almost 4 and nearly all the time if you are alone with him you'd never know anything is off. But it's all a matter of degree in relation to his typical peers. While DS has started some great imaginative play with his firetrucks, dressing up as a fire fighter, making sound effects as he "sprays" us, "rescuing" our cat- his play is pretty limited and he still only does it in this one area. It's a great example of how our ASD kids can (and must) be taught how to play. They did a week long unit on fire trucks at his preschool and taught them this great song, and I'm sure he's just acting out what he learned/saw at school. He wouldn't have been able to just pick this up on his own.

Another example- when I drop DS off in the morning he'll say his usual phrases "Mama are you going to work? Are you going to pick me up tonight?" And he sounds pretty typical. But there's another little boy the same age in the class and I'm always amazed at how different- older and mature- he sounds. Like he'll say, "Where do you work? What do you do?" I teased him once and asked him if he wanted to go to work for me and he rolled his eyes and said "No!" like I was an idiot. DS would never do that!

nicolita14w

Thanks so much, everyone! Your replies were extremely helpful!

Glendi428

MirandaHobbes:

This happened to me as well (ASD diagnosed at 20 months). At first he made great strides, starting talking a lot more, pointing, eye contact- basically all of the things they said he wasn't doing before. Even now, DS is almost 4 and nearly all the time if you are alone with him you'd never know anything is off. But it's all a matter of degree in relation to his typical peers. While DS has started some great imaginative play with his firetrucks, dressing up as a fire fighter, making sound effects as he "sprays" us, "rescuing" our cat- his play is pretty limited and he still only does it in this one area. It's a great example of how our ASD kids can (and must) be taught how to play. They did a week long unit on fire trucks at his preschool and taught them this great song, and I'm sure he's just acting out what he learned/saw at school. He wouldn't have been able to just pick this up on his own.

Another example- when I drop DS off in the morning he'll say his usual phrases "Mama are you going to work? Are you going to pick me up tonight?" And he sounds pretty typical. But there's another little boy the same age in the class and I'm always amazed at how different- older and mature- he sounds. Like he'll say, "Where do you work? What do you do?" I teased him once and asked him if he wanted to go to work for me and he rolled his eyes and said "No!" like I was an idiot. DS would never do that!

my DD is 4 and was also dx'd around 22 months... your summary nailed it on the head. You pretty much described my observations of my DD to a tee!

nomadica

DS was diagnosed 8 months ago and I question the dx all the time. Sometimes I'm positive he is on the spectrum, sometimes I'm certain he isn't. It's maddening.

malcivar

Same here.  Dx was 6 months ago and there are days where I think "they are so wrong" and then there are days where I think they hit the nail on the head.  

He has made significant improvement though.  I don't know that he's going to meet all his IFSP goals but it definitely is a noticeable difference.