On the diagnosis path and I have questions!

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pragmaticmom
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15 Mar 2010, 11:54 pm

Hello everyone! I have been reading posts on this site for quite some time and have found it comforting and informative and now I am hoping I can get some insight from those of you who have already walked in my shoes...

I have three boys, my middle son, is 5 and when he was 3, I began having discussions with our doctor about the possibility of ADHD. He just was/is so impulsive at times and it seemed that everyday was groundhog day- all the same battles and issues day in day out. I tried everything and found myself exhausted however, I was never totally comfortable with a diagnosis of ADHD because he had the ability to obsess and focus for long periods of time on Star Wars.

After a few very awkward social situations at birthday parties and parks and more impulsive behavior, coupled by sensory issues (it is a MAJOR ordeal to get him to brush his teeth- which we DO every night. It has gotten better now that he has a ritual involving a hand towel and a cup of water), I finally shared ALL of these things with my doctor and he suggested a psychological evaluation. He also has lack of prolonged eye contact. He is VERY social- loves his classmates and they love him, but he gets in trouble for touching them too much. He isn't anti-social, but VERY uninhibited. On the other hand, he can friends over at the house, and play his own game and not care at all what his friend is up to.

The psychologist we were referred to was booked out for months and we did finally get in back in Jan. We discussed much of his behaviors with her and she right away referred us to an Occupational Therapist which we have now been seeing for over a month, however, the psychologist was unable to do an evaluation on him until today. During that first visit she mentioned PDD-NOS, but obviously nothing formal was made. She sent us home with the Vineland Screening paperwork. Today, I turned that in and he spent three hrs with her for an evaluation, which we will have the results of on Monday. She said he completed the evaluation and that he did "good"- don't know what that means. She also mentioned that sometimes he didn't seem to understand what she was asking him- like there was some sort of processing malfunction. I thought that would be somewhat expected in screening someone for Asperger's. I just don't know if I felt like she was competent.

I was the one that noticed my son struggling and I came across an article about Asperger's one day that had several elements in it that reminded me of my son. I started reading everything I could get my hands on and the thing is, nothing has been able to convince me otherwise about my son. Is it crazy to say that I will be frustrated if the evaluation doesn't come to the same conclusion? Has this happened to anyone else? Am I horrible to actually hope that he gets this diagnosis? I can't explain it- I know that on one hand, no one ever wants there to be a "glitch" for their children because we want life to be as easy for them as possible without the hurt and frustration, but on the other hand, if it isn't the case, what am I missing? What am I doing wrong?
Did the professionals diagnosing your child(ren) get it right off the bat? How was your child officially diagnosed? I know many have a heads up first from the school, but my child is in Preschool and when I have spoke with his teacher, she has never seemed too alarmed about his behavior or anything. I seemed to be the one who has noticed everything. Has anyone else had this experience? I actually sometimes feel like I am the only one that senses and sees that something is a little "off" and everyone else thinks, I am crazy- I just am curious if anyone else had that intuition despite the assurances of other's that he was just being "a boy"? I have an older boy- but it seems different.

To those of you that stuck it out and read my ENTIRE LONG post, THANK YOU!! ! :)



jamesongerbil
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16 Mar 2010, 12:18 am

Hello! Welcome to Wrong Planet!

I don't know what to do precisely; however, I can tell you from experience that things can get tougher down the road. The sensory issues, as I experienced them, do not go away on their own. (Although, they tend to fluctuate.) Receiving a dx for your child can offer him help with what ever communication, impulsiveness, and sensory integration issues he might have. Plus, you can get some feedback as to what you can do as a parent. (Ok, I think I missed your point up to now, but I wanted to leave what I had written above, in case I didn't miss your point, because it's really late at night.) For finding a competent psych, I suppose you might try finding an autistic services place. They may have further resources for you, names of doctors or such. They can offer great moral support, too. Your general doctor might help. Sometimes AS "appears" so minor that it goes undetected for an undefined period of time. I sought out my own dx. No one knew. I mean, it's normal, I guess, to expect some variation. Unless a small child is outright ACTING OUT, then no one will really care too much. Many kids on the spectrum have behavioral issues due to stuff. It's associated with the spectrum. If he isn't, then his alleged AS may go unnoticed.

Central auditory processing disorders seem to be common among people on the spectrum. There are more advanced cases (as you might read about online.) I have one and it's minor. I never got it checked out, it's just a part of me and my AS. Like, not looking as though you understand what is said is precisely the point.

Happy journey, I wish you luck!



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16 Mar 2010, 10:36 am

What I have learned about AS is that every case is different. So, just because your child does not exhibit all of the symptoms doesn't mean he does not have it. Many of the symptoms you describe fit AS.
I think what happens is that many kids, especially boys have odd behaviors and quirks even if nothing is wrong. So I think it just takes time for it to all come to a place when you say "something is going on"

My son is almost 5. My experience was a little different, but all along, I knew in my heart that something was wrong. My son had good eye contact, was lovable, did not mind being touched, and had several words. His thing was gross motor skills. He was a late crawler, walker, jumper. I was taking him to physical therapy for all of that, and at first, the therapists just thought he had low muscle tone. However, as time went on, other things began to unfold. But, all along, everyone kept reassuring me that everything was fine. That he was just a little slow. Since he was my first and only one, I knew everyone thought I was just being paranoid or a hypochondriac. But, I knew as a mother, something was not right. I think you have to trust your mother's instinct, and just keep pushing for a diagnosis that you feel comfortable with. The diagnosis will help you get your son the help that he needs.

Good luck and welcome to Wrong Planet!



psychohist
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16 Mar 2010, 11:59 am

pragmaticmom wrote:
I was the one that noticed my son struggling and I came across an article about Asperger's one day that had several elements in it that reminded me of my son. I started reading everything I could get my hands on and the thing is, nothing has been able to convince me otherwise about my son. Is it crazy to say that I will be frustrated if the evaluation doesn't come to the same conclusion?

It's not crazy, but it's not right, either. Often people will come to a conclusion early, and then it's easy to see what one expects to see and miss contrary information. I'd recommend waiting and seeing what the psychologist says.

In particular, I'd point out one element that doesn't seem to fit - aspies are normally rather asocial, so your son's being "highly social" doesn't seem to fit. It's not impossible, but if the diagnosis comes back confirming ADHD or with something else other than Asperger's, you might consider that it may be correct.



bethaniej
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16 Mar 2010, 12:39 pm

First let me say you just described my daughter. She remained undiagnosed for much longer with me trying various ways of trying to help. Finally in 6 grade the school psychologist suggested an evaluation. First she got a diagnosis of adhd through the filling out of paperwork. We saw a psychiatrist and therapist at the same office for asix months during which time they confired and decided there was something more to it and further testing was needed...the therapist said shed considered aspergers and a processing disorder but that Madison was a really good kid and she questioned the need for one on one therapy which made her so uncomfortable.

I was happy with how things worked because I felt it was not a fly b y night decision. They both noticed the same problems and patterns over time. The testing was 4 hours with Madison and two with me as well as a load of paperwork. I felt it was very thorough and well done.

My suggestion is that when you go for results, let them know your thoughts



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16 Mar 2010, 2:05 pm

psychohist wrote:
one element that doesn't seem to fit - aspies are normally rather asocial, so your son's being "highly social" doesn't seem to fit.


Well, at that age, it can be a little different. In kindergarten and first grade, I wanted acceptance by my peers as much as any kid, I just had no idea how to go about fitting in, so I had a tendency to 'act up', as a class clown. As noted, this young man seems to have some trouble understanding boundaries and personal space, as he touches his playmates 'too much' - and that is in fact very Aspergian, that he's trying to socialize, but missing many very basic nonverbal cues, not seeing or grasping everyone else's examples of how it's supposed to be done.

The way that played out for me was, by second grade I'd begun to recognize that I wasn't really fitting in and didn't quite understand why, but it began to sink in that when the other kids laughed at my clowning, they weren't laughing with me, but at me. At that point I withdrew and became very shy and unsure of myself.


pragmaticmom wrote:
On the other hand, he can friends over at the house, and play his own game and not care at all what his friend is up to.


:P Apparently I did this a lot, too. My mom was telling me just a few weeks back that she enrolled me in Cub Scouts to try to get me to socialize more, and even volunteered as a Den Mother, but when the Pack was at our house she'd get them working on a project as a group, only to find me off by myself doing something completely different.



bethaniej
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16 Mar 2010, 4:19 pm

Wanted to mention this as well. My daughter very much wants to have friends and in fact is very social even at twelve. The peoblem for her is not understanding how...appropriateness...she blurts things out without thinking....blows up so easily but then gets over it just as fast and doesn't understand why other people are still mad at her or have been alienated. Also she gets nervous about expressions she doesn't understand (face blindness).

I've also observed her in large social groupings I ask her to be part of (youth group)....she almost never joins and I always see her off doing something else or watching the group like she doesn't understand the language.

So I'd say being social does not preclude an as diagnosis. Again, you could have been describing my kid.



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16 Mar 2010, 4:20 pm

There was no one in my son's life during preschool who ever considered he might be AS, and that was despite several porfessional observations by various people for various reasons. We were told there could be sensory issues, but it would be a light case, and we were told he was a "magic" child. The preschool director thought I was just a bad mom (lovely, isn't it?). But autistic spectrum? That never came up during those years.

My son appeared to be very social in preschool, as he has always been drawn to people. But the reality is he wasn't very good at being with kids his own age.

The AS really didn't start to show itself until he was older, and the other kids had a clear level of social maturity that he did not. That is often the case with high functioning kids - it can be really hard to tell when they are young if it is AS, or just the way that unique child is developing. It was the elementary school that started to suspect AS in first grade, and that only because we were forcing them to look at him regarding his writing issues (a common co-morbid).

So ...

If your son is AS, it may remain difficult to tell at his age. If the professional agrees it is AS, you have it to run with. If the professional doesn't, listen to what she thinks it IS, research that, and let it sit for while to see if that may fit. If the possibility of AS continues to nag at you, another evaluation can be done at a later date, when the differences are likely to be easier to see.

Either way, the most important thing is to be tuned into your unique child, and focus his teachers, etc., on his unique needs. And none of that requires a label. Not for now, anyway.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


pragmaticmom
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16 Mar 2010, 5:18 pm

Thank you all for your thoughts and ideas....I will let you know what the psychologist says. Her office called today and can squeeze me in due to a cancellation so I don't have to wait so long!



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16 Mar 2010, 7:58 pm

pragmaticmom wrote:
Hello everyone!...I was the one that noticed my son struggling and I came across an article about Asperger's one day that had several elements in it that reminded me of my son. I started reading everything I could get my hands on and the thing is, nothing has been able to convince me otherwise about my son. Is it crazy to say that I will be frustrated if the evaluation doesn't come to the same conclusion? Has this happened to anyone else? Am I horrible to actually hope that he gets this diagnosis? I can't explain it- I know that on one hand, no one ever wants there to be a "glitch" for their children because we want life to be as easy for them as possible without the hurt and frustration, but on the other hand, if it isn't the case, what am I missing? What am I doing wrong?

Did the professionals diagnosing your child(ren) get it right off the bat? How was your child officially diagnosed? I know many have a heads up first from the school, but my child is in Preschool and when I have spoke with his teacher, she has never seemed too alarmed about his behavior or anything. I seemed to be the one who has noticed everything. Has anyone else had this experience? I actually sometimes feel like I am the only one that senses and sees that something is a little "off" and everyone else thinks, I am crazy- I just am curious if anyone else had that intuition despite the assurances of other's that he was just being "a boy"? I have an older boy- but it seems different.

To those of you that stuck it out and read my ENTIRE LONG post, THANK YOU!! ! :)


Hi pragmaticmom, and welcome to WP! :D With my son, he was seen by three different specialists at different times and got three different diagnoses (AS, ADHD, PDD-NOS). The reality is, there is so much overlap in the diagnostic criteria and so it is not uncommon for the so-called experts to arrive at different conclusions. We have stuck with PDD-NOS as the official diagnosis, but have decided to treat my son as AS because there are far more resources available for AS, and relatively few resources for PDD-NOS. Bottom line: Inform yourself the best you can and go with your gut instinct...that's my suggestion. Best of luck!



MrTeacher
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17 Mar 2010, 12:34 am

pragmaticmom wrote:
Hello everyone! I have been reading posts on this site for quite some time and have found it comforting and informative and now I am hoping I can get some insight from those of you who have already walked in my shoes...

I have three boys, my middle son, is 5 and when he was 3, I began having discussions with our doctor about the possibility of ADHD. He just was/is so impulsive at times and it seemed that everyday was groundhog day- all the same battles and issues day in day out. I tried everything and found myself exhausted however, I was never totally comfortable with a diagnosis of ADHD because he had the ability to obsess and focus for long periods of time on Star Wars.

After a few very awkward social situations at birthday parties and parks and more impulsive behavior, coupled by sensory issues (it is a MAJOR ordeal to get him to brush his teeth- which we DO every night. It has gotten better now that he has a ritual involving a hand towel and a cup of water), I finally shared ALL of these things with my doctor and he suggested a psychological evaluation. He also has lack of prolonged eye contact. He is VERY social- loves his classmates and they love him, but he gets in trouble for touching them too much. He isn't anti-social, but VERY uninhibited. On the other hand, he can friends over at the house, and play his own game and not care at all what his friend is up to.

The psychologist we were referred to was booked out for months and we did finally get in back in Jan. We discussed much of his behaviors with her and she right away referred us to an Occupational Therapist which we have now been seeing for over a month, however, the psychologist was unable to do an evaluation on him until today. During that first visit she mentioned PDD-NOS, but obviously nothing formal was made. She sent us home with the Vineland Screening paperwork. Today, I turned that in and he spent three hrs with her for an evaluation, which we will have the results of on Monday. She said he completed the evaluation and that he did "good"- don't know what that means. She also mentioned that sometimes he didn't seem to understand what she was asking him- like there was some sort of processing malfunction. I thought that would be somewhat expected in screening someone for Asperger's. I just don't know if I felt like she was competent.

I was the one that noticed my son struggling and I came across an article about Asperger's one day that had several elements in it that reminded me of my son. I started reading everything I could get my hands on and the thing is, nothing has been able to convince me otherwise about my son. Is it crazy to say that I will be frustrated if the evaluation doesn't come to the same conclusion? Has this happened to anyone else? Am I horrible to actually hope that he gets this diagnosis? I can't explain it- I know that on one hand, no one ever wants there to be a "glitch" for their children because we want life to be as easy for them as possible without the hurt and frustration, but on the other hand, if it isn't the case, what am I missing? What am I doing wrong?
Did the professionals diagnosing your child(ren) get it right off the bat? How was your child officially diagnosed? I know many have a heads up first from the school, but my child is in Preschool and when I have spoke with his teacher, she has never seemed too alarmed about his behavior or anything. I seemed to be the one who has noticed everything. Has anyone else had this experience? I actually sometimes feel like I am the only one that senses and sees that something is a little "off" and everyone else thinks, I am crazy- I just am curious if anyone else had that intuition despite the assurances of other's that he was just being "a boy"? I have an older boy- but it seems different.

To those of you that stuck it out and read my ENTIRE LONG post, THANK YOU!! ! :)


You know your son best! A psych will not get the level of understanding that you have, although might have more experience with autism spectrum disorders. You will probably be right, if you think you are right because assessment can be self-fulfilling. But a label is just a label (kind of...)- you need to focus on needs of the child, impacts of the ASD on the child and what you want for your son.

Teachers may not catch social difficulties. Sometimes the relationship between a teacher and a student can be really clear cut and teachers' can be very busy people. I recently reviewed my report cards and you would think that I would have become an elite athlete with a 4.0 GPA... what I remember of school and what is written down is way off. It is because of AS traits --- the ability to think quickly, to work independently (and ignore others), the ability to be honest ( no goofing off), strong literacy and math skills (strong results for standardized tests :roll: ) ... stuff teachers love. Also, a teacher may not say negative things about your child unless there is a real problem because you may think negatively of them and then tell their principal. Generally, the troublemakers take up 80% of a teachers time. The kids that get by, get by without any adult intervention.

GL!