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tkroach
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03 Feb 2006, 2:22 pm

Hi. My 6 yr. old son was diagnosed as HFA last week. His doc said that in a couple of years she will probably change the diagnosis to AS, depending on how much he progresses in the speech dept. His speech is limited due to Aphasia, which is probably due to his also having cerebral palsy (left-side hemiplegia). Also, he is growing out of having almost exclusively echolalic speech (yea!).

I was just wondering if anyone here has had problems with one disorder masking another, because for the past three years I was told by the school "experts" that my son's behavior was due to his CP. When I finally got them to test him for autism this year, they said it was possible, but they went with a diagnosis of Inattentive ADD. That's when I got fed up and took him to a specialist. I am now trying to get his IEP changed for the third time this year.

Also, he has started taking a very low dose of Paxil which we will gradually increase every two weeks. This is supposed to help with his anxiety. Has anyone had success with this med?

I just want to say that I've been reading posts here for a couple of days, and they have been really great sources of info for helping me to help my son. Thanks.



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03 Feb 2006, 2:50 pm

That's odd that she would change the Dx from HFA to AS. Speech delay is the main difference but I always understood that once a speech delay was recognized, it was...well, recognized. The dx doesn't change even if the delay is overcome. Oh, well. I guess the particular label isn't important if you get the services you need.

Having one's child mis-dx'ed, especially for ADD, if VERY common. Many parents here have experienced that. But keep in mind that there still might be ADD AND HFA. Don't discount the ADD just because you know more now...consider it before dropping that label.

My child started Paxil but we knew within two weeks that it just was the wrong med for him. His anxiety increased greatly. He's gone to Lexapro and that is working much better for him. His doctor said Paxil is often tried first becuase it is the cheapest of the SSRIs. But every child is sooooo different. I hope the Paxil helps your little guy.

Welcome and I look forward to reading more about your family.

BeeBee



tkroach
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03 Feb 2006, 3:34 pm

Thanks, BeeBee. The Paxil worsening his anxiety is not something I have been looking for. I've been looking for either improvement or no change at all. I read an article by Temple Grandin about the "wow!" effect that is seen when the right dosage of the right med is finally found. I guess I'm an optimist, because that's kinda what I've been hoping to see. The doc did tell me we may have to try more than one med to find the right one.

I was wondering about his speech myself. I can understand that the CP is the probable cause of delay, but I don't think it's the reason for the echolalia. Is echolalia associated exclusively with autism, or is it seen in AS as well?

I agree that the ADD can't be completely disregarded. The doc said that she saw my son, Sam, as having more difficulty with shifting focus than with inattentiveness. It seems to me that he has difficulty with both. I just felt that the school went with ADD because, by their own admission, they were having trouble "pulling apart" his autistic behavior from his CP behavior, so the ADD was the safest way for them to go. Luckily his Pediatric Behavioural Specialist was able to tell the difference between CP and HFA idiosyncracies. Now it's just a matter of getting the school to accept the diagnosis. The one thing I do agree with the school on is that he is a very complicated little boy.



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03 Feb 2006, 4:23 pm

It sounds complicated. My biggest frustration is the schools some days. Sometimes they have been God-sends and sometimes its like dealing with a pile of bricks. Overall are you happy with his IEP?

I didn't think about the speech delay being related to the CP! Now that you say that, it makes sense. I don't know if echolalia is associated associated with AS. Hopefully someone will be by soon to let us know. I know my son had shades of it but he's PDD-NOS, not HFA or AS.

BeeBee



tkroach
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03 Feb 2006, 5:23 pm

PDD-NOS is what I thought my son's diagnosis was going to be when I first started reading about ASDs. He just didn't seem to fit into the AS or HFA definitions. But now I know, and as you said, every case is so different. I went back and looked at his developmental testing and found that on the AS Diagnostic Scale-ASQ-he scored 116. His doc wrote that this indicates that AS is very likely, so I guess that may also be why she left the diagnosis open to change.

I know what you mean about the schools. Sometimes they're great, and at other times they make me so mad I could spit nails! Currently, I am not happy with his IEP, but hopefully that will change soon. At his last ARD the speech path. said that he just needed to be monitored, but his doc is telling me he needs at least two hours of speech and OT a week. I doubt I'll get that much from the school but I'm going to try to get the max. they will provide. What burns me is that at every ARD for the past three years I mentioned the possibility that something besides CP was going on with my son. I even mentioned AS and HFA specifically, but they always said it was just the CP that made him behave differently. I guess I should have acted independently earlier. Was your son's diagnosis done by the school or did you have to go to a specialist? Did you have trouble getting his IEP changed? My Sam is currently in an ABLE (Alternative Behavior Learning Environment) Class because of his meltdowns and other idiosyncratic behavior, but he does get inclusion for things like art and PE. His teachers are great, it's the bureaucracy that I sometimes have problems with.



ster
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04 Feb 2006, 6:54 am

my son was just diagnosed as having aspergers this past summer at the age of 13....doctors alternately diagnosed him with: ADD, ADHD, Bipolar, MDD,and ODD just to name a few........many people in the mental health field have little or no experience with aspergers. as far as the paxil goes, my son was on it~psychiatrist increased it because it was ineffectual...once the doseage increased, so did my son's aggressive behaviors.

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What burns me is that at every ARD for the past three years I mentioned the possibility that something besides CP was going on with my son. I even mentioned AS and HFA specifically, but they always said it was just the CP that made him behave differently.

IMO, the folks that are at those meetings are not experts and have no qualifications to say what is aspergers and what is not. an official diagnostic workup should help state your case.



tkroach
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04 Feb 2006, 8:27 am

That's just what I was thinking. This a very rural area and a very small school district. I know that they have worked with autistic kids before, but their experience and qualifications are nowhere near those of the doctor who did the diagosis. When I sent the school a copy of the doc's evaluation, I also sent a copy of her bio. so they would know that she was someone who had lots of experience and training. Hopefully that will help when I go to argue my son's case.

Thanks for sharing re: the Paxil. With your experience being the second I've heard of it worsening symptoms, I'm really going to keep a sharper eye on my son's moods. It's getting harder to hold on to him when he has a meltdown (it's amazing how strong a six year old can be). I can't imagine trying to do the same for a 13 year old.

I'm sorry you had to go through all those different diagnosis before getting a correct one. I feel very lucky to have our doc. She started working on her specialization in Autism Spectrum Disorders back in the 90s when another doctor suggested to her that her son might have AS, and he was right. I like the fact that she is also living the parenting side of AS. It gives me lots of confidence in her.



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04 Feb 2006, 5:28 pm

Man I remember the days when aspergers WAS HFA, boy oh boy have they cocked up the whole diagnoses process. Oh no we must make aspergers seperate from autisum we have to seperate the useful from the useless retards who band there heads against wall. Were doing this to help the less able autistics...

No no no guys you are playing your hand straight into the eugenics movement, congratulations.



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04 Feb 2006, 7:31 pm

You certainly have a right to your opinion, Laz, but I think you are totally looking at it wrong.

We parents here love our children. The very thought that ANY child is not worth caring for sickens me and I'd bet most of the parents here.

Again, its your opinion but I disagree most strengourly.



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04 Feb 2006, 7:54 pm

Dave's case is unusual, I think. At three, his day care provider suggested we contact early education to get his speech reviewed. He didn't qualify for services at that point but we were told to revisit is in Kindergarten. He started reviecing speech services then. At the end of K, his teacher took me aside and said D was very bright, but that she sucepected a learning disability and if he didn't seem to catch on by second, we should push for testing. First grade seemed to go okay but unbesknown to us that was because his teacher was giving him lots of extra help. He starting failing misorably in second grade...not learning and acting out. The teacher said he was bright but "behaviorial disabled" and should be in an EBD school. I asked about testing for an LD and was told I was nuts but the school agreed to test. Turns out he is one of the brightest but most learning disablied student they have ever seen. The two things had sort of masked each other. Once he started getting writing support, the behavior immediately cleared up...for two years. By fifth grade he was again having trouble with school and anxiety. He was involved in therapy and the therapist thought the anxiety was caused by the fact that he was reading and understanding at the high school level but still writing at a first grade level...think of the frustration you'd have if you could orally give a report that far exceeds anything expected of you but can't write it. Anyway, towards the end of fifth grade his principal said David reminded her so much of the Apies/Autties in the middle school programs that she thought we needed to look into that. The schools personal went though several ASD screening tools and saw that his teachers where seeing behaviors that put him in the "highly likely" range of an ASD but we, his parents, were not. That reinforced for me that it was school anxiety, not an ASD.

Then started sixth grade, middle school here. David was so excited to go and I was so worried. I knew it would be hard for him.

He fell on his face. Without the support of one teacher to organized things for him, he was lost. All the time. He made no friends. Other kids hassled him. The noise from the lunchroom and the gym made him physically sick. It was a horrible year. But that was the year that his therapist and the school decided we needed to relook at ASD. We were very lucky to see one of the best independent ASD in youth specialitst. She dx'ed him as PDD-NOS right about the same time the school found he was "likely autistic" and to give him more support. The schools here never say one is autistic or dyslexic or whatever...only more or less "likely."

This year (7th grade) he is in an ASD room for 1/2 days and mainstreamed for art, math, and social studies. Some days are great, some rotten. But, he's making friends and picking up social skills. His writting is getting somewhat better under the one on one tutoring he's getting this year. I just wish life was easier for him...he tried harder than anyone I know.

Well, I wrote more than I intented!

BeeBee :lol:



ster
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04 Feb 2006, 10:14 pm

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Oh no we must make aspergers seperate from autisum we have to seperate the useful from the useless retards who band there heads against wall. Were doing this to help the less able autistics...


as an educator, i work with people across the entire spectrum. i fell that everyone deserves to have a voice~even if they are nonverbal. my students may not communicate to me with their words, but their actions and affects certainly speak volumes. i don't think any of us was trying to say anything bad about being autistic or aspie....simply that the mental health field makes a distinction between the 2.

Quote:
Then started sixth grade, middle school here. David was so excited to go and I was so worried. I knew it would be hard for him.

He fell on his face. Without the support of one teacher to organized things for him, he was lost. All the time. He made no friends. Other kids hassled him. The noise from the lunchroom and the gym made him physically sick. It was a horrible year.


this sounds so much like my son's 2 years in public middle school. he did so well when he was in a small elementary school with one teacher to help him organize and keep on top of things. the noise in the small cafeteria was still unbearable, but nothing compared to the large cafeteria at the middle school



tkroach
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05 Feb 2006, 12:36 am

Honestly, the name the doc chooses to label what my son does and how he behaves isn't really the point. I just want to learn all I can to do help make his life less stressful and hopefully give him a chance at being independent.

I also very strongly disagree with Laz. Something in our discussion must have been misinterpreted because I don't see anything there could have encited hostility and accusations like that.

I want to thank the rest of you for being helpful and constructive. I really appreciate you sharing your parenting experiences.



tkroach
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05 Feb 2006, 1:59 am

BeeBee, your description of your son so reminds me of a student I had back when I taught high school. He was the only student I had whose IEP listed him as being gifted and talented, and yet still qualifying for special ed. services. I remember that he could just dazzle others with his brilliance, but he couldn't stay organized if you paid him to. In spite of this, he always did well on the assignments he remembered to turn in. Flexibility is really important with teaching ASD kids. So far Sam's teachers have been great, but I know in the higher grades you can run into some real doozies.

My Sam has a similar issue to your son's re: reading/writing. He's a first grader, but he reads at a second grade level (I don't know how he can talk so little, yet read so well). However, he's having to work on comprehension. He doesn't always understand what he reads(sometimes I don't either :). His handwriting is also really bad, but that's where the OT come's in. He's getting better, but he does so well with a keyboard that I'm going to ask about doing some of his work on the computer.



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05 Feb 2006, 10:04 am

tkroach wrote:
...he always did well on the assignments he remembered to turn in.


:lol: Did that line hit close to home!


[qoute]...he does so well with a keyboard that I'm going to ask about doing some of his work on the computer.[/quote]

Good idea! Our elementary school gave David an AlphaSmart. Sturdy little thing...idea for kids. We never did get it to print out however. He uses a computer with voice recognition now.

BeeBee



tkroach
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07 Feb 2006, 3:01 pm

I had my informal meeting with the powers that be at my son's school yesterday to compare their evaluation with the doc's. Luckily, I had his teacher on my side because the ruffled feathers in the room were pretty obvious with each person politely reminding the other how much experience they had. Of course, none of them are doctors or have the experience of our dr., so how can they sit there and tell me that they know better than she does what is good for my son? One of them gave the most condescending grin. Yeah, that really made me feel that we were working toward a common goal. Grrrr! I do feel like something was accomplished, however. They are going to set up an ARD with the OT and the Speech Path. to see about increasing Sam's services so I won't have to pull him out of school to make sure he gets as much as the dr. wants him to get. They will pay for me to go to regional workshops on autism (one will feature Tony Attwood), which is great because I plan to become certified in special education once my daughter starts school and this training will help that process. And they are going to retest Sam in Oct. His teacher told me after the meeting that because the testing is so expensive, they are probably waiting to do the testing in the next fiscal year which starts in Sept. I'm not going to argue the point because (for Sam's sake) I want to eventually get a position with the school so I can be close to Sam and have the same hours as he does. Luckily, out here in the country, we are close to several other school districts, so going somewhere else is always an option. On the downside, the few private schools we have aren't that good. We'd have to commute to San Antonio for that. There's alway homeschooling, but I don't feel confident that I can give Sam all he needs.

BeeBee, thanks for telling me about the AlphaSmart. I'm going to mention that at his upcoming ARD.