Need some input - 4 yr old daughter

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Hi. I've posted on here a few times previously, but not in a while. My daughter will be 5 yrs old in September, and underwent a neuropsych evaluation the summer of 2010 to test for PDD. The neuropsych said definitely not on the spectrum, but that she would benefit from OT for Sensory Integration and fine motor...and that she would probably be released from that therapy in a year. After a month or two after she started OT last fall, neuropsych came back and said maybe she is on the mild end of the spectrum...that sometimes, she doesn't have great eye contact. The thing is, all of her symptoms were VERY variable. She would have excellent eye contact and was fully engaged one day, and not so much the following week. She had everyone stumped. Anyway, they went back and forth on whether or not she should be retested in a year and decided that it wouldn't hurt to rule it out again completely using different tests (5 yr old tests, vs. 3). Also, the neuropsych said to get her into a gifted program once she goes to school full time, because her IQ scores were very high and she's extremely bright (which I already knew). So, she just had another neuropsych eval on Monday, and she also had another OT reevaluation Tuesday (since she's due for one). She no longer qualifies for therapy. On the visual perception test, she scored that of an 11 yr old, the therapist said. Another test, she scored her age (this was the only one she was behind in a year ago, so now she's caught up) and on the Beery, she scored a year and a half above her age. She has great social reciprocity, is very creative, loves people, animals, (she wants to be a veternarian and tells me all the time that she would "be a great dog owner"). After the eval on Monday, the neuropsych said she'd need to score everything and that she could tell already that there's no way she'd qualify for an Asperger's diagnosis, but that she may fit the criteria for PDD-NOS...but she's not even sure about that. I meet with her again next Wednesday.

My questions:

1. If her only issue is stereotypical motor movements (flapping hands, kicking feet, side to side head nodding with upward gaze) on occasion, and eye contact issues SOME of the time, but most of the time is great, then what's the problem?

2. If you have Autism, aren't your visual perception scores lower? This is just what I've been reading, but don't know if that's true.

3. What is the benefit of being diagnosed with PDD - NOS? Does it enable insurance to pay for certain services? The only services she required was OT, and now she no longer needs it...so how does the PDD - NOS lable help?

Thank you very much in advance. I really love that this board is available.

Regarding the eye contact issue- don't all kids have a little trouble with it? Lack of eye contact is not abnormal. Sometimes it means the child is uncomfortable or not being honest. Lack of eye contact in Asperger's is more consistant, as with ASDs in general.

From what I've read, she sounds fine and like she won't have problems. Does she have friends? Is she well liked by teachers and peers? If she can get along fine with them and is excelling academically, sounds like she will do well in life and the neurologist is correct, she is very mild if at all.

I can only really help you with this question because I don't really know a lot about IQ scores and definitely not about insurances, but the problem might be that the symptoms are variable. For example, I can often pass as at least a semi-normal person. But if you put me in a place I don't know with people I don't know and a lot of noise, everything goes wrong. So it might be helpful if the symptoms remain variable and are brought on by some specific inputs. Otherwise, there may not really be a problem. Many Aspie traits do not present a problem, especially not if people understand them (for example, brute honesty could be seen as a positive trait as well).

Thank you for responding! Yes, she does have a couple of buddies, and seems to get along fine with kids at preschool. She still has another year of preschool left, and then she'll go to Kinder. She doesn't really have friends that she gets together with on a regular basis yet. I asked her preschool teacher how she was doing socially, and she said great. The thing that I've noticed is that she HATES playing games where there is a clear winner and clear loser. She absolutely hates to lose and will get very mad when she does, and storm off. This is variable as well though...because last year, the kids at school were having a little race and she lost one of them, but it was no big deal. I think she more or less hates to lose in private or against mom and dad...not necessarily at school. She used to have more sensory issues, that she has seemed to grow out of completely. It used to be that she would get tired after playing with a peer for 10 minutes and then get really upset and have a fit or something. I taught her to recognize when she wants to be alone, and she then started to just say "I need some private time" and go off to her room for a little bit. When we had a buddy of her's over not long ago, she played with him (and his little sis) for 3 hrs straight!! That never would have happened 8 months ago. They would have played longer, but it was time for him to go home. And they had fun together! No fights! I was much more concerned about behavioral issues a year ago than I am now. Her teachers adore her. She is a funny little girl. Last fall, she attended a church preschool, and the teacher clashed with her quite a bit. It was a place she had gone since she was 2 yrs old and we loved it there, but the teacher just did not "get" her, like the others, and the one she had the second half of the year. One day when I picked her up from that preschool, she looked very sad and I asked her why. She said the teacher told her to stop flapping her hands. I was horrified! I told the teacher that is something she can't help right now, and she just needs to do it. My daughter mentioned during that time how she was different. I told her that is what makes people so special...is their differences. The teacher was toxic for my daughter. Honestly, the kids in that class loved my daughter. They all got along with each other....but once the teacher started telling her to stop flapping her hands, the kids followed suit. She did not have that problem at the current school. I do, however, worry that it will begin to affect her socially and have been trying to think of things she could replace it with...or maybe have her go to a cognitive behavioral therapist? What do you think of that? I've never flat out told her not to do it.

Thank you also, Artros, for your input! Yes, her symptoms are very variable. Honestly, there have been many times when I was concerned, and then many more times when I thought, "Oh no, there's no way she could be on the spectrum." It's very confusing.

I would keep a close eye on the situation, which you seem to be doing already and if problems arise mention it to the doctor as they come up because, sometimes, AS or PDD-NOS isn't diagnosed until later, so she could still be diagnosed, eventually.

Does the hand flapping come and go like the eye contact? You can try working with her and a CBT. It may or may not be difficult to redirect the stim. You would need to see how she reacts to the suggestion. If she is alright with it, might as well work with her on redirecting it. She sounds mild so this might be possible.

Preshool teachers are on the lookout for developmental disorders and ADHD, so perhaps the teacher who told her to stop hand flapping did it to see if she could on her own. The teacher should have brought it up in conference, though.

Yes, the hand-flapping comes and goes...but it A LOT more prevalent than the fleeting eye contact. The hand-flapping looks different in different situations. For instance, when she does it when she's very excited about whatever she's witnessing, she looks completely engaged and looks at whatever is exciting her. During these times, she has a big smile on her face and may giggle. When she is thinking about something, she'll do it and may smile/may not, but I don't necessarily know why she's doing it...no obvious trigger. One day, when I was driving the car, she was in the backseat flapping her hands and she looked like she was in her own little world. I asked her what she was thinking about, and she immediately responded with a giggle, "I was thinking about when we were at the park and that dog was running down the hill." Sometimes, especially when we're at the table eating, she'll do it while she looks up in the air and moves her head in such a way like she's watching a bird fly back and forth. Sometimes, it looks as if she's holding her breadth when she does it...and then will exhale. She always can "snap out of it" so to speak. When she's doing it, I'll call her name and she'll look at me and respond.

Oh, also...when she does it, she also tends to kick her legs at the same pace as she's flapping her hands (if she's sitting).

I'm not sure. She could be autistic, or she could have some other condition such as sensory integration dysfunction (stimming is commonly caused by sensory issues, and kids with visual processing issues may avoid eye contact).



No, not necessarily.

Autism and nonverbal learning disability often go along together, and NLD would result in relatively poor visual perceptual scores, but other autistics are visuospatial learners and have the opposite pattern. And some autistics don't fall into either category and have visual perception skills equivalent to their overall intelligence.



Well, it helps to get the school to listen to you. You mentioned trouble with teachers telling her to stop handflapping and so forth. If she had a PDD NOS diagnosis, you could tell them that her handflapping was due to her disability and she needed to do it, and if they pushed the issue you could even threaten them with a lawsuit. I've found teachers are a lot more ready to modify things for one child if that child has a diagnosis of something. It really surprised me that stuff my Mom kept bugging my teachers about and never being listened to, once I had my PDD NOS diagnosis, suddenly they'd back down when Mom pushed the issue when they'd never done so for an undiagnosed weird kid.

From what you've posted, it doesn't seem like your daughter is on the spectrum. She may have sensory issues, and those should be monitored, so she doesn't suffer sensory overload on a daily basis. But her social reciprocity suggests that she is unlikely to be on the spectrum. Even highly intelligent high-functioning ASD adults struggle mightily with social reciprocity, so it's really hard to imagine a five-year-old ASD child doing well in that area. Does she demonstrate good reciprocity across the board, with you and her teachers and her playmates? Or is it more like she is great with you, but not with others? Depending on severity, a lot of ASD children don't even demonstrate much social and emotional reciprocity with their parents at that age. If they do, there may still be a huge difference between their behavior at home vs. at preschool/school. In any case, you're doing the right thing to keep ASD in mind, even without a diagnosis, in case your daughter demonstrates more autistic traits as she gets older or really falls behind socially when she starts school.

I wonder if her sensory issues are affecting her eye contact? I often don't make eye contact because it's hard for me to look and listen at the same time. If she has that issue, she may be avoiding eye contact because it makes it easier for her to listen.

You both have good points. Her therapist even started to think it was strictly sensory because she said, one week, she had great eye contact, and then another week she didn't. The day she didn't, she had her go through a dark tunnel and said when she came out the other side, she popped out and had great eye contact. So they explained all this to me before regarding sensory and I accept it. But I guess they just don't see a lot of "strictly sensory" kids, so when they do see one, it looks to them like ASD. My gut tells me that it's a mixture of completely separate issues, that when you put them together, it looks like ASD (to a professional). If she's on the spectrum, I'd want her identified...but I'm nervous about them labeling her with a diagnosis that she doesn't have...that seems just as awful as someone going undiagnosed if they have a need to be diagnosed. I almost canceled the test, because I stopped worrying about it...figured CBT would be the way to go in the future...but they talked me into getting the reevaluation. The thing is, she's doing great, so I don't understand really the need to push it unless the need exists. I mean, even if she has Aspergers, I would still go by her needs. If she need some extra help in social skills, I would put her in social skills classes, if she needed more OT, then I would do that for her...why the rush for a diagnosis when there's not really a problem? She's a happy girl and I'd like to keep her that way. I'm tired of people dissecting her every move. And actually, her motor planning and fine motor issues are great now. She's made so much progress that she will no longer qualify for OT, and I kind of consider that a good thing. If she doesn't need it, she doesn't need it. I believe strongly in early intervention, but I also think too much intervention can be just as bad in some cases. When she was going to therapy 3 times a week for so long, I decided to cut back because she didn't seem as happy and we didn't have as much time for fun stuff. Once we cut back, she actually made much more progress.

If she's having trouble learning something, then sure, get her in therapy; but kids do learn at different rates.

Seems like you already know that a kid's play is how they learn, so I won't stress that. A kid should have time to be a kid, you know?

Another question I have is.... is it possible that the symptoms of HFA/Aspergers don't really manifest until you're older? For instance, she doesn't have any one special interest that she talks about, or that everything comes back to in conversations. She loves everything. She doesn't hyperfocus on one specific thing...but is that something that develops when you're a little bit older if you have Aspergers?

Things that she does do:

Interrupts conversations...but, she is a four year old (almost 5 yr old), so that could be just an age thing...although it seems different when she does it...almost like she doesn't recognize that two people are having a conversation. She's our first and only child though, so I don't exactly have another one to compare her to.
Hates to lose
engages in pretend play, but likes to lead it. If I lead it, (and we're playing with dolls or something) and I have my doll come up to her and say, "Lets go to the movies" or something like that, she'll get very quiet and not really respond or just say very little (which is unlike her because she's a big-time talker). She'll even lean over to me and whisper, "Mommy, I don't know what to say." She'll seem embarrassed. But if it's her idea and she's the one leading it, she has no problem.


I sat in the room at the beginning of the eval and watched her play with the neuropsych. They had cups and dolls and pretended like they were having a picnic. My daughter then took some pink play-do that was right there and put it in one of the cups and called it pink lemonade. She has really good and creative pretend play skills.

Thank you for your responses. This is great to be able to post here and get some good feedback. I really do appreciate all your comments and insight. It's comforting.

I don't know. When I was 4-5 my hyperfocus and special interest were my most prominent traits, although I suppose it's totally possible not to acquire that until later.