What happened at your pediatric neurologist evaluation? possible DX - Page 2

[Thing1Thing2]

Thanks for the info, ladies. I have a copy of his speech test scores among other replies I want to post here to all of you, but I have a three week old - and it seems to be getting harder to get any "me" time!

Be back soon to update - and thanks again for the responses.

[Thing1Thing2]

Just wanted to update. I haven't really paid the type of attention to this thread that I want to, mainly because my 8 week old has severe reflux and I am trying to sleep/ take care of DS1/ find a way to breastfeed DS2 without causing him pain. With all of this going on, we have also continued evaluations for our oldest and we may be getting an Aspergers diagnosis next week.

He had his educational evaluation and the special ed teacher suggested Aspergers. He then had a private test and he scored in the Aspergers range. The evaluator said it most likely is, but she can not diagnose and we meet with the school doctor next week to see what will happen. I'm hoping he can get some special education help. I'm also reading the book (in all my spare time ) Emmeline suggested about helping the special ed child.

One of these days, I will get on here and post a summary of his test scores. Not happy about an Aspergers dx, but at least we are getting a handle on something.

[FarmerBeth]

Originally Posted by BonnieNova 

Just wanted to update. I haven't really paid the type of attention to this thread that I want to, mainly because my 8 week old has severe reflux and I am trying to sleep/ take care of DS1/ find a way to breastfeed DS2 without causing him pain. With all of this going on, we have also continued evaluations for our oldest and we may be getting an Aspergers diagnosis next week.

He had his educational evaluation and the special ed teacher suggested Aspergers. He then had a private test and he scored in the Aspergers range. The evaluator said it most likely is, but she can not diagnose and we meet with the school doctor next week to see what will happen. I'm hoping he can get some special education help. I'm also reading the book (in all my spare time ) Emmeline suggested about helping the special ed child.

One of these days, I will get on here and post a summary of his test scores. Not happy about an Aspergers dx, but at least we are getting a handle on something.

Try not to let it get you down.  Your son is so young and no matter what the diagnoses, with such early intervention a lot can change for the better.  Now that you do have a handle on something, you and the professionals working with him can help with his weaknesses and he'll learn to cope with himself. 

At 5 years old, my DS was so non compliant in cognitive testing, the assessors had to guess at him having a borderline IQ score but couldn't tell for sure because of the behavior.  At 7, he was compliant enough to find out he was actually 2E with some really high cognitive scores, but his tiks were so bad we couldn't even go on public transit with him and feel comfortable because people were so disturbed by the loud throat clearing and skin picking.  He didn't have a friend yet, transitions at school and home were like dealing with a 2 year old.  I'd try to get him to leave off from reading a book to transition to leaving for a favorite sport, and one hour of gradual warning wasn't enough.  We had a whole year of hearing only about the game "Spore" and Darwin's theory of evolution (and now I look back at this wondering how he wasn't diagnosed at that point).  Now I've got a quirky but terrific 11 year old that shines at the science fairs, has one good (equally quirky) friend, is so interesting to be around and has lots of big dreams about changing the world for the better just like any other kid; and I really believe he can.  We have plenty of challenges (he just reached the point this year that he can call someone on the telephone, for example), and the teen years are looming and I'm nervous.  I know some people aren't as lucky and their ASD kids may have more challenges than mine, and I really respect the challenges that parents with children with children more profoundly affected with autism face.  I'm just telling my story because I think with help from the community at large, lots of kids with ASD, especially HFA/Aspergers, can do well for who they want to be.  There's no way I can ever picture my DS being particularly socially adept, or being the life of the party, but he doesn't care about that stuff, and so I try not to sweat that.

Anyway, just try your best to focus on what you can now do to help your child rather than letting the label get you down.  It sounds like you have a bright, interesting little boy who has challenges and quirks, and the diagnoses name won't change that reality, just give you some tools to cope.

[Thing1Thing2]

Wow Farmer Beth - it's so nice to hear that your son is turning out so well! And thanks for the encouragement.

I just recieved the latest results of his educational evaluation. (This was the last evaluation we had). I'm going to post his scores on here because some of them confuse me. Like how he managed to do so poorly on his cognitive, but yet he impressed the evaluator with how much he knew. The evaluator has an explanation for that, which I will include. With this report, I'm not sure we are going to get the help we need.

We had him enrolled in daycare just for a month because they wanted to evaluate him in a preschool setting. The teacher told me that when they came to watch him, he acted completely NT. Before the evaluator came and after she left DS was completely different

Emmeline, we have an appointment for a developmental pediatrician. Thanks for the advice. The earliest they could take us is in May! I hope we dont have to wait that long to get the DX we need.

Here are some of the results (S.D. scores):DAYC

Cognitive - negative 1.5

Communication WNL

Social Emotional WNL

Physical Dev WNL

Adaptive behavior -negative 1.6

General Dev. Quotient WNL

Bracken Basic Concept Scale BBCS-R

SRC Composite Advanced

Achenbach Child Behavior Checklist CBLC

Syndrome Scales

Emotionally reactive WNL

Anxious depressed WNL

Somatic complaints WNL

Withdrawn WNL

sleep problems clinical

Attention problems WNL

Aggressive behavior borderline

Internalizing problems WNL

Externalizing problems clinical

total problems clinical

DSM oriented

affected problems clinical

anxiety problems WNL

pervasive dev. probs borderline

Attention deficit/hyperactive clinical

OD problems WNL

GADS

Aspergers disorder quotient Highly probable

- Cognitive development

D's score on the DAYC falls within the poor range. However, this score appears to be a low estimate of his cognitive abilities. Because D's skills were not solid at the 36 month level, he established an early ceiling and therefore did not recieve credit for the remaining items. D's SRC of 122 suggests that his pre-readiness skills are advanced for his age. D stacked up to 6 blocks and reprodcued a simple block design. He matched simple shapes. He understood the concepts of one and one more. He understood the concept of heavy. D counted up to 5 objects. D had difficulty sorting objects by color, but easily sorted objects by ite,. D did not nest at least 4 cups into size order. D did not udnerstand the concepts of same/different or more/less. He did not understand the concept of 3, such as in Give me three blocks.

With regards to pre-readiness D identified 10 common colors, all basic shapes including a pyramid and a cylinder. D identified several letters, upper and lowercase as well as several numbers including 2 digit numbers such as 27 and 53. D identified 4 concepts related to size/comparison.

- Achenback behavioral checklist

d's early childhood teacher completed the CTRF. Based on her report of his classroom behavior he obtained a total score of 49 which falls into normal limits. She indicated that within the last 2 weeks he has begun to show behaviors that are not typical for him (ie running and flapping, speaking "jibberish" going into his own world) teacher reported that these behaviors are only observed 30% of the time.

Aspergers disorder scale

GADS resulted in a Aspergers Disorder quotient of 105, 63rd percentile which indicates the probablity of Aspergers disorder to be "high". It is noted taht this is not a diagnostic scale. The GADS identifies children at risk for aspergers. Based on this assessment d has difficulties undeerstanding social norms and relating approriately to his peers. D attahces very concrete meanings oto his words. He does not understand what causes people to dislike him. D has difficulty understanding humor. He demonstrates an excellent memory and is superior in some areas of intelligence. He is very concerned with speaking correcly and pronouncing words perfectly. D becomes frustrated quickly when he is undure of whats expected of him. D demonstrates some unusual movements when walking or running (flaps arms).

Summary

-Ds cgnitive score should be interpreted with caution as it appears to be a low estimate of his abilities

- his adaptive behavior suggests mild delay in his skills

- D demonstrated many skills way beyond his established ceiling but could not recieve credit for those items due to the scoring limitations of the DAYC.

- DSRC of 122 suggests that his pre readiness skills ar advanced for his age

Results of this evaluation reveal that D possesses well developed cognitive, academic, and language skills with strengths in letter, number and shape recognition. He exhibits weaknesses in his ability to relate apporpriately to others and his ability to cope with day to day frustrations. However based on the teachers report, it appears that D does not have significant difficulty functioning within the classroom. His scores on this evaluation suggest that he does not have difficulty learning of acquiring knowledge.

 ever feel like pulling your hair out!? I don't understand how they could summarize it like this, with his low cognitive scores! Sure, he identified all the 2 digit numbers that they asked of him (which I had no clue he could do).. sure, he knew what a cylinder, cube, column was... But what about all the gaps in his knowledge?

He could pick out three balls in the picture, but could not hand the evalutor three blocks. He could answer the question "which of these belong together" and put the pictures together that were similar, but could not tell the evaluator which two items were the same. He could not point to the picture which had more or less of an item. And whenever he felt he couldn't answer a question he would start stimming and distracting the evaluator. How did she not pick up on this?

We have the appointment with the doctor next week. I'm poring over the books I have looking for some kind of way to convince these people that my DS needs help. I understand he's advanced in some areas, but what about the areas hes delayed in? This has to be a joke? I'm not trying to be argumentative, but I just don't understand how they can say he is well developed!

Thanks for listening. Now off to cleaning I go.

Edited by Thing1Thing2 - 11/10/11 at 4:15pm

[FarmerBeth]

This sounds a little similar to our own DS's first assessment.  Sometimes if a child isn't particularly compliant (I don't mean in a purposeful way, but just unable to follow the test as per the norm) the testers try introducing concepts in ways that are not officially part of the assessment.  ie: our DS went on so much about Spore and Darwin during his testing at age 7, that they couldn't get sufficient answers during the visual pattern completion part of the IQ test.  The tester ended up using a verbal logic test that is usually used with older kids and adults to see where his logic was at in a way he was willing to respond to.  She also used conversational and game means to try to see some visual patterning.  She could tell his ability with logic was high, but she couldn't score all of this as it wasn't part of the standard testing.  This could be part of what's going on with your son in that they may have to officially assign lower scoring but can tell he is capable of demonstrating more given the right circumstances.  Also, kids at risk for Asperger's tend to have NVLD type scores, and can have strong memories and ability to acquire  some types of knowledge but with gaps in performance (nonverbal) abilities, so academic type testing at the preschool level may be misleading.The not knowing which pictures are the same but knowing which things go together thing and the like sounds like some sort of difficulty with the semantics of the language.  I'm no expert on this, but my younger DS had some language delays and we used to have these sorts of issues with him, and still have problems with some types of concepts like the difference between tomorrow and yesterday, or "I gave this to someone" vs "someone gave this to me".  This type of thing can happen both with ASD or separately. 

It sure is a lot to sort out.  You're on a good start, but I think it's great you're seeing the developmental pediatrician in May to get this further sorted out.  You don't seem to have quite enough to work with.  Did they give you any recommendations for helping your son in the meanwhile?

[Piglet68]

It sounds like you've been getting lots of good support. We took DS to a developmental pediatrician when he was 3 because of his behaviours, and he spent an hour with us which is almost unheard of in a doctor's appointment, but in the end he felt DS was "neurotypical". He was not the only expert to rule out autism. But as DS got older we got a better idea of what was going on and he was just tested at age 7 and it was clear as a bell. So I want to caution others here that the world of autism is rife with stories of misdiagnosed kids at young ages. The information is getting out there, and hopefully more health professionals will come to recognize the early signs, but still it can be really hard getting the right diagnosis when the kids are really young. Best of luck to you!

[Thing1Thing2]

Originally Posted by FarmerBeth 

This could be part of what's going on with your son in that they may have to officially assign lower scoring but can tell he is capable of demonstrating more given the right circumstances.  Also, kids at risk for Asperger's tend to have NVLD type scores, and can have strong memories and ability to acquire  some types of knowledge but with gaps in performance (nonverbal) abilities, so academic type testing at the preschool level may be misleading.The not knowing which pictures are the same but knowing which things go together thing and the like sounds like some sort of difficulty with the semantics of the language.  I'm no expert on this, but my younger DS had some language delays and we used to have these sorts of issues with him, and still have problems with some types of concepts like the difference between tomorrow and yesterday, or "I gave this to someone" vs "someone gave this to me".  This type of thing can happen both with ASD or separately. 

It sure is a lot to sort out.  You're on a good start, but I think it's great you're seeing the developmental pediatrician in May to get this further sorted out.  You don't seem to have quite enough to work with.  Did they give you any recommendations for helping your son in the meanwhile?

Yes, my DS is similar. He will remember something that happened 6 months ago and say that it happened yesterday. He remembers things that haven't been spoken about. Such as this morning he said " Mama I really missed you last night". me:"Oh you did? I was sleeping right next to you all night." D:"no you weren't, you went to work so that you could buy me Annie and Clarabel (toys)".  He was speaking about a time last year when I went to work at night (which I hardly ever do), and he was upset about it. I had told him "Mommy has to work so that you could have food and clothes and toys". He had asked for Annie and Clarabel at that time and I said "sure". We then bought him Annie and Clarabel that week.

So it makes me wonder... Is he just getting the *days* mixed up? Or maybe he is reliving the past? Or maybe it was traumatic for him so he remembers it so clearly? He does this often.

The recommendation they gave was to enroll him into an integrated NT/ special ed preschool at least 2 days a week. They think he will do well there. So they recommend for him to be there, but don't want to foot the bill? Unfortunately, we don't have the funds to do this at the time. We barely have enough for groceries each week. This is the case we will be bringing before the evaluators and doctor next week and hoping they will approve him for help.

Originally Posted by Piglet68 

It sounds like you've been getting lots of good support. We took DS to a developmental pediatrician when he was 3 because of his behaviours, and he spent an hour with us which is almost unheard of in a doctor's appointment, but in the end he felt DS was "neurotypical". He was not the only expert to rule out autism. But as DS got older we got a better idea of what was going on and he was just tested at age 7 and it was clear as a bell. So I want to caution others here that the world of autism is rife with stories of misdiagnosed kids at young ages. The information is getting out there, and hopefully more health professionals will come to recognize the early signs, but still it can be really hard getting the right diagnosis when the kids are really young. Best of luck to you!

Thank you. It's hard when you don't really know what to look for as a parent. There are some behaviors which I thought were NT and come to find out they aren't. I wish I would have picked up on them earlier. And then there are times when he acts completely NT, like when he is in a new situation such as a Dr.s office, which means no diagnosis! But when we bring him home he's a totally different child.

Speaking of this... Maybe someone can shed some light on this for me. He is always attention seeking. He needs LOADS of attention and can't focus without it. He starts stimming and head banging, pushing, bumping into me, grabbing my legs so I can't walk and so on. But he also does things when he is getting attention - but just not *enough* attention. He will do things like pretend his feelings are hurt about something I did. Or maybe he isn't pretending?

Last night, he was helping me make a cake. He started throwing food around and I had to tell him that if he didn't stop, he wouldn't be able to help (seems like he throws things just to push my buttons). Then he plays this game where he tries to get as far as he can. So instead of throwing food around, he is mixing the batter and "whips" the spoon out making the batter fly onto the counter. I figure it's a mistake. I don't say anything. He does it again and again - I think he's waiting for a response. So I tell him if he does it again, he won't be able to help anymore. So then he starts pretending like he's going to do it. Making the motions of whipping the spoon out, but not following through. So I'm getting annoyed but don't say anything. I start spooning the batter into the cake pan and then put it in the oven. Then he starts crying "IIIIIII wanted to do ITTTTTTTT!" Like his feelings are hurt. It's almost as if he knows I will feel bad about it, and he's trying to get some emotion out of me. I can't figure out what this is. Is this something that every child does? A situation like this plays out almost every day. More often since we have a new baby in the house.

Edited by Thing1Thing2 - 11/12/11 at 10:09am