New with a question

iVillage Member
Registered: 07-22-2003
New with a question
11
Mon, 09-15-2003 - 2:00am
My girlfriends son is 11, going on 12. He was diagnosed with ADHD and Opositional disorder at around 4 and is on all the meds associated with it. Recently at a routine physical his pediatrician asked if she ever heard of Aspergers Syndrome. Niether of us had heard of it, but when we started to research this disorder, it wasn't have if the articles were describing a condition that her son has, if was as if they were describing her son period. With the exception of maybe one or two markers, he hits everyone dead on.

This is a child who has a tested IQ of around 134, yet his writing is so poor it is barely legable. He will read books cover to cover, albeit only Star trek and Harry potter, in a weekend and then start reading them all over again, and yet nearly failed reading because he can't remember to fill out a sheet of paper naming the books he has read and handing them to the teacher. He knows every spell that Harry Potter can cast and what it does and what the reverse is. He can, and will, name for you every vessel that every species of alien in star trek has in it's fleet, tell you what class of ship it is, what it's armament is and even what show or movie it first appeared in until you eyes glaze over, yet ask him if he has any homework to to do at the moment you pick him up at school and he can't remember. He also lacks empathy as described in children with aspergers. He does not seem to learn that walking into the living room and stating in a demanding tone "feed me" is not the appropriate way to ask for something. He got in trouble last year, Before we knew about asperger's, for walking around in class and talking. This was when all the other students were sitting at their desk quietly and working on a project. When we asked him, when he saw the other children sitting there working didn't he think that perhaps they were doing something that he should be doing too. He said no. He thought that they were sitting quietly just because they felt like it. There are many other examples of him not being able to read the social ques that many of us take for granted. We are so sure of the Aspergers connection that we have gave his teacher for this year information on the subject before we have an "official" diagnoses.

Question is now, what do we need to do to get that diagnoses. I have read that this is neurological and will show up on a MRI. But I have also read that it is not somthing that will show on a test. We did bring him to a neorologist and was then told that this is not her area of expertise and would not offer a diagnoses on this conditon because of that. Now we have to look for someone else who does.

We are in the Virginia area and it seems there are not many here who do this. Maryland yes, Virginia no. Plus Kaiser Ins. is not very helpful in the area of mental conditions. At least in this area or the world. My girlfriend is going to switch health insurance companies on her next open season, but that is not till the spring of next year. School has not been a problem, they are helpful. Because of the ADHD, he is on a 504 plan and they supply him with an alpha smart to do his work on since his hand writing is so bad.

Sorry for the lengthy post. Any info, feed back or general experience knowledge is ppreciated.

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iVillage Member
Registered: 07-11-2003
Mon, 09-15-2003 - 7:35am
Hi, and welcome to the board!

Wow, your girlfriend's son sounds like a younger version of my husband, whom we call 'His Royal Aspieness'. He deffinately sounds like he has Asperger's. As far as getting a diagnosis is concerned the answer may be closer than you think....

The local school district is bound by law (Individuals with Disabilities Education Act- IDEA-97) to perform a full evaluation at the parent's request. AND it is free, the school district must either have an in-house team do it or pay to have another team do the eval. Failing that, ask to have him refered to a Developmental Pediatrician.

As for tests, no, there are no medical tests for Autism of any kind. While there have been some consistancies found in the lobe development of people on the spectrum there isn't enough clinical research data to prove that MRI's can diagnose any ASD. It would be nice though, that sure would cut out a lot of 'hurry up and wait'.

In the mean time, your welcome to join the conversations here. We have a wide varriety of proffessions and educational styles represented on the board. Have your girlfriend post too. The most effective way to help the boy is to understand what Asperger's is and learn how to handle the day-to-day things that come up from other parents who've been there and done that. I still have problems getting my 9yo daughter to understand that saying "When are we going to the park?" in a demanding tone is NOT a good way to ask if she CAN or not.

Here's a question for you....When asking HIM a question does he ever act like you're not in the room? My husband used to do that a lot, drove me nuts. But then, there's an example of how a loving and informed family can be an asset to an Aspie. LOL. Oh, and my dearest husband (DH) is almost 40 and his handwritting puts most doctors to shame...but he's trying. But, on the other hand, he's one of the most intelligent people I've ever met. He's also honest to a fault. Even with his 'quirkiness' I can't imagine being married to anyone else. And the kids (we have 6 all together, 3 are on the Autism Spectrum) are precious too. One is a 12yo bookworm (she can go toe to toe over the Harry Potter stuff), another is a 9yo Cosmologist and Rocket Scientist (don't get her started on the origins of the universe........PLEASE), and the other is a 3yo world alminac (she has a thing for globes, maps, and organizing). DH's thing is me, motor cycles, and gagets (this year his gaget line is audio/visual equipment.....yeah, new surroundsound sterio for Christmas. LOL)

Peace,

Candes (Wife to Craig-Asperger's, mother to Ayla-PDD-NOS, Jade-HFA, Eva-ASD, and three 'normals')

iVillage Member
Registered: 04-05-2003
Mon, 09-15-2003 - 9:04am
Welcome to the board. This is a great place for support and info.

Have you tried Children's National Medical Center in DC? I know they have offices all over the metro area, maybe they have one near you. The program that would cover Asperger Syndrome is the Pediatric Neuropsychology Program. A big hospital like that would probably take your girlfriend's insurance.

Candes' idea about getting a school eval is a great one. However, in my son's school district, they are pretty clueless about Asperger Syndrome and even more clueless on how to place him. We had his eval done at Children's Specialized Hospital (NJ) and the school accepted the evals from them. It also sped up the classification process.

Good Luck

Leenie

iVillage Member
Registered: 07-22-2003
Mon, 09-15-2003 - 9:11am
Thank you for the information. We didn't know that the school is required to do this if we ask. That will be most helpful.

To answer your question about him acting like you are not in the room. Yes, if he is involved with something. Then when you ask a second time he shouts his answer at you like he his annoyed that you didn't hear him the first time.

Gadgets are another one of his traits too. I have taken to working on and building computers as a hobby, but I can't do anything with him around. He wants to help too much and has the intelligence but non of the patience. He is really pretty knowledgable about computers, and if you have two hours he will tell you. He has a habit of taking things apart for no reason too. This year at school they will be required to use a TI-83 for one of their subjects. They run about $100.00, and our fear is, one, he will lose it on the first day. Two, he will drop it and break it or three, he will take it apart. He is all excited about getting one. Not because he wants to use it at school, but because he wants to see all the things it can do with a computer. I just built this computer and I am not as anxious to see what it can do, LOL.

Seth is a handful and can be exhausting, but our main concern is not how he reacts to us but how the world will react to him. He is so blunt and to the point that he is often construed to be a brat. He just has no idea how to speak tactfully. Even when he means no harm, he comes off as having an attitude. He also has no concept of adult verus child. He sees himself as an equal and is not intimidated at all by adults. We fear that his world is going to be full of bloody noses as he gets into high school and talks to some of the kids the way he talks to us. You also get a lot of, "if he were my kid" comments under the breath of adults who he comes in contact with and don't know better. In a sad way, being able to point to a condition that people can understand is a mixed blessing. His last teacher literaly hated him, and Seth knew that and started to hate going to school. A gym teacher called him lazy in front of the class because he couldn't run the mile in the required time. We had to have a talk with her and she apologized. His motor skills are very deminished in comparison to other children. I have seen Seth run at what is his full speed, and he is very slow and akward. For all his intelligence and high IQ, it is obvious to us that he is several years behind in maturity.

I didn't mean to write so much when I started, but thanks for your help, and I will come around more often now that I know you are here.

Thanks again.

Avatar for suitemadameblue
iVillage Member
Registered: 03-26-2003
Mon, 09-15-2003 - 11:30am
Welcome to the board!!

I can't really say anything other than what has already been said, which has been some outstanding advice!! Schools and hospitals are going to differ from area to area - and even from person to person within each establishment - so much patience is going to be required on everyone's part!! LOL

Best of luck with everything, and NEVER feel bad about a long post around here! If we didn't have each other to vent at and send questions to, I think we'd all go insane in a very short amount of time!

Again, welcome!!

~Carrie

mom to Hollyann(almost-6), and Tristan(7yo, PDD-NOS, ADHD, (unofficially)bipolar, sensorineural hearing loss to the left side)

iVillage Member
Registered: 07-11-2003
Mon, 09-15-2003 - 4:37pm
<> -Yep, that's my husband too! I have to tell him "Honey, if you want me to know something you have to actually say it out loud. Just because you know something doesn't mean I do too."

<> -That sounds like my work parnter's 15yo DS (dearest son). Scotty Jr has absolutely no concept of the boundries between adult/child relations OR male/female. And that latter part is what really worries us about him. He often tells jokes that are entirely not oppriate for 'mixed company' and constantly does things, that while okay to do to other males is waaaaaaaay not-acceptable to do to females (like patting a person's chest to get their attention). As far as the child/adult thing is concerned he is constantly upset with us because we are constantly asking him to leave the room due to conversation. Scott Sr and I are learning disability researchers and help people with severe learning disabilities (like AS) get a real education, not just a piece of paper that says 'High School Diploma'. Scotty Jr just doesn't understand WHY it's okay for my husband or his step mother to be in the room while his dad and I are working and he is not. We also blow off steam after a long day with kids by playig cards and he doesn't understand that he IS one of the kids and is constantly getting underfoot and trying to join in the conversation.

<> -Oh yea! that's something that is VERY familiar to everyone here on the baord and has been the topic of conversation MANY times. That, and outright comments by well-meaning family members who, after years of knowing this stuff STILL don't get it.

I had to laugh about your desciption of Seth taking things apart. That fits my 3yo and DH to a 'T'. DH is a tool monger (was his gaget obsession for 15 years); we claim that HE is the original Tool Man, not Tim Taylor, LOL. And Eva takes things apart to A) see how they work, and B) as an excuse to get to use Daddy's tools....SOMEONE is going to have to put it back together...right? Tee Hee. At her last Dev Ped appointment the good dr sat in awe as Eva very quickly and systematically disassembled and reassemble an old X-Ray reader that hadn't worked in over 6mo. And the kicker? The dr called later to tell me that when the office handyman went to do a final check on it before recycling it he found that it worked perfectly. My 3yo had successfully rewired the thing. LOL, and my aunt says there's nothing 'different' about her at all.....right. She thinks machines are her 'peers' and other 3yos are just there for convienience (slaves).

Wow, Seth sounds sooo interesting. I bet you guys have all sorts of wonderful stories about life with him!


Okay, as you can see, you're not the only one who can run-off-at-the-post, LOL. We actually like long posts around here. And feel free to vent anytime you want. That's one of those "you mean I'm not the ONLY one?" moments we get around here. LOL.

Peace,

Candes

iVillage Member
Registered: 03-25-2003
Mon, 09-15-2003 - 10:32pm
Just wanted to mention that I work for Kaiser in Southern California. Here in Orange County, Kaiser has an Autism Evaluation Team that does a combined, multi-disciplinary evaluation for kids over two. There is an M.D., a PhD, a speech therapist, and an occupational therapist, and they do a complete evaluation over a whole morning. Kaiser services in the D.C. area of course, are probably completely different. STILL, Kaiser is NOT the kind of HMO where there is pressure on the "primary physician" to hold back on needed evaluations or services SO an avenue for evaluation MUST be offered, even if it is through the school district. There should be a developmental pediatrician to whom he can be referred. Autism spectrum disorders unfortunately generally DON'T show up on MRI; they are "clinical diagnoses" made when experts match a list of characteristics to the characteristics shown by the child. As such, the diagnosis is subjective, and various experts can disagree, sometimes completely.

Be sure all options at Kaiser have been checked out. Check with primary pediatrician, seek 2nd and 3rd opinions from other Kaiser pediaricians if you can to see if you can get referred. Find a YOUNGER pediatrician; they are often better trained in autism. I have no idea what options are available in that area, but don't give up until you've rattled every cage!

Good luck,

Tigs

iVillage Member
Registered: 07-22-2003
Tue, 09-16-2003 - 1:42am
After reading my original post a second time, I see that I did not proof it very well. My part on Kaiser should have read that their mental health provisions are lacking in this part of the world. One example, they have no developmental pediatrician in this area. After checking back with them many times, They finally allowed Seth to be seen outside the program. An appointment was made with a very good developemental pediatrician. When the bill was submitted, they wouldn't accept responsibility for payment. Since the time they said Seth could go outside the program and the appointment being made and the visit took place, They got a pediatrician. They didn't get back to us with that info though. They expected us to call them to check every few weeks to be sure nothing changed. This was a $430.00 visit. I think they finally agreed to pay it, but after much arguement with a rather nasty administrator, who's comments and phone manners were down right unprofessional and we intend to complain. Now part of the problem is that in this area, as we were told, it is hard to get the type of mental health professionals to work for Kaiser. They can make much more money working privately, But it is something that we definately need. We had a similar problem with a dentist visit for Seth. He refuses to brush his teeth. The taste of toothpaste is annoying to him. He got into the habit, we found out later, of pretending to brush his teeth when he wasn't. When we got him to a dentist he had eleven cavities. To make matters worse, Seth is terrified of needles and throws such a fit that he had to be removed from one dentist without really being evaluated because he would not let the dentist so much as look into his mouth. We got Kaiser to agree to let him go out of program to see a dentist that would put Seth under to work on his teeth. Between the dentist and anesthesiologist this was going to cost $1800.00. Kaiser agreed to pay $500.00, most of the dentist part. That was OK with us, it is not their fault that Seth has his problems. We came up with the other $1300.00, plus the money for an evaluation visit. After the procedure, when we sent the bill they said they would only pay $400.00. This was after they sent us a letter stating that they agreed to pay the $500.00. After spending some $1475.00 out of pocket, another hundred for us was a big deal. Sorry, I didn't mean to make this a bash Kaiser post, but I wanted to explain that in our neck of the woods, outside of normal doctors visit and prescriptions, they are seriously lacking when it comes to specialist. At Least for children with special problems. If we could go with something like Blue cross/ blue shield, we would have access to a greater choice of doctors at hospitals such as Childrens Hospital in D.C.
iVillage Member
Registered: 03-28-2003
Wed, 09-17-2003 - 7:46pm
Karn,

You've gotten so much great advice, I can't possibly add to it! But one thing about your post struck me, so I thought I'd comment on it.

You say Seth is very interested in computers and gadgets. Well, this is a very employable, life vocation type interest! I can only imagine how frustrating it can be to have a "professor" looking over your shoulder, but if you could possibly build on this, just think what it could do for his self esteem. Also, it may be a way for him to find his niche in life. More importantly, it may be a way for you to show him you find value in him.

My son probably doesn't actually have an autism spectrum disorder, but rather has a combination of other disorders which make him appear to be autistic. I constantly worry that he will never find a focus, and will have a hard time finding his niche. Believe me, if he were Seth's age and wanted to take computers apart, know what made them tick, etc, I'd be making dh hit all the Goodwills and salvage yards for old and discarded computers and let him have at it.

Anyway, just a thought!

Sio

iVillage Member
Registered: 07-22-2003
Thu, 09-18-2003 - 12:26am
I have an old computer that someone through out, that happened to be in excellent condition. The person who had it took excellent care of it. I actually took it out of the trash because I was curious myself to play around with, because it was old enough, (1988) to be considered obsolete in computer terms. When Seth returned from visiting his father during the summer, I let him mess with it all he wanted. At this point, you can't do that with the computer you intend to use and keep running. He gets so stimulated that he moves without thought, and would wind up damaging it. We had to put him in his room once last year, just to install a new mouse. He wasn't satisifed to look over your shoulder, but rather was jumping over it to grab, touch or plug something in. I know what you are saying though. We feel that Seth will be highly employable in his adult years. It is easy to understand why Aspergers has sometimes been referred to as Geek Syndrome. I wouldn't be suprised to find out that Bill Gates may be on the spectrum.
iVillage Member
Registered: 09-27-2003
Sat, 09-27-2003 - 2:58pm
I'm Seth's mom. I am very grateful for all the replies to my sweetheart's posts. It is heartwarming to see that we really aren't alone.

I agree that my son has a very employable interest. His teachers have all said the same thing, and that he has a lot of potential. He also loves to share what he knows, and for all his limitations in social situations, he shows a remarkable amount of patience and gentleness with younger children. Moms of the younger children in our neighborhood have sung his praises many times. I think he would make a wonderful teacher one day.

However, we walk a fine line with praise and encouragement. Give him more than modest praise and he becomes overconfident, brags constantly, and announces his accomplishments upon first meeting people. Thinking he has mastered something, he ceases to investigate further and halts his own progress.

Plus he tends to get tunnel vision, and will neglect everything else in pursuit of that special interest. This is a real problem in school where they have many different projects going on at the same time. So encouraging him too much could actually set him back. Recently his teacher introduced him to Oobleck, a food-colored cornstarch and water mixture which he experimented with furiously for a week or two. However, he got into one of his mental loops with it and couldn't seem to get past playing around with the water content of it. Very little else was done. We won't even discuss the green spattering on every surface in the kitchen that kept reappearing every day! lol

I am sure others on this board have expericed that sensation of walking on a tightrope when it comes to guiding a child like this. I would give anything to feel free to praise him loud and long and often, but I don't dare.

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