Help - I'm so confused (m)

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Registered: 03-27-2003
Help - I'm so confused (m)
6
Fri, 08-15-2003 - 1:46pm
First of all, I talked to the psych doing ds' initial consultation yesterday. She told me (after meeting ds once!) that she didn't think he was AS because he could carry on a conversation about something other than dinosaurs. (While looking in the opposite direction the entire time!!!!) He could also understand metaphors and idioms. He isn't very literal like some AS kids. But does that preclude him from having AS if he does have several of the other difficulties? One on one especially with an adult is where he shines. He was a perfect angel the day she met him. He really was and quite charming. I think she suspects he is gifted/ADD. Personally, I think it is more gifted/AS.

OK, I can understand that there is a typical AS kid, but can't a child still be AS and not present as typical, especially in a clinical setting. He also had is semantic/pragmatic language eval on Wed. He did fine. I knew he would. He "knows" what to say in very specific circumstances because he's been taught by me, his sisters and his teachers, but that doesn't mean he always does it.

So anyway, to add to this, last night I took him to Borders books. He wouldn't pick out a small book, kept wanting expensive games or big dinosaur books. (I even found a small paperback dinosaur book for him to get.) Finally, I told him to come on or I'd just put the books down and we'd just go. He still didn't. So I put the books down, grabbed his arm and headed for the door. All HE** broke loose then. He was totally out of control - screaming, hitting my arms to get them off him. Trying to get away from me to run back to the children's area. I had to sit right there on the floor and hold him until he calmed down. This is a 7 1/2 year old (8 in November). I'm sorry, I didn't know "normal, gifted" almost 8 year olds had knock down drag out tantrums in stores. (note the sarcasm in that sentence) I kept trying to tell him that he was bothering the other people and needed to calm down. I told him maybe we'd come back when he was calm. He said, "What if the books are gone?" I told him I'd order them off the internet. LOL He still didn't calm down. Finally, I called dh to come and help me get him out of the store (he is small for his age, but still pretty wiry and strong.) I managed to get him out with the help of store employees holding the door for me and then met dh in the parking lot. I took my girls home and left dh to calm ds down - I was done. I had been so calm through the whole thing that. But honestly, the thing that kept me calm was remembering that he most likely DOES have AS and this happens to kids with that and he isn't doing this "to me." I really need that diagnosis to truly understand and help his behavior. No, he doesn't do EVERYTHING that is typical of an AS kid. But, he doesn't get social cues, he does inappropriate things to get attention from peers, he doesn't know who to kiss or hug and who not to without being told, he has this all encompassing interest in dinosaurs (although it does range to ocean creatures, reptiles and bugs sometimes). He will go off by himself showing no interest in other children and act like a dinosaur. Yes, he has friends at school, but guess what he plays with them...dinosaurs. When they don't want to play dinosaurs, he will occasionally play something else, like monsters. He spends most of his time at home either drawing (dinosaurs, bugs, monsters, ghosts, ocean creatures, etc. quite detailed) but his people are stick figures. He has no interest in drawing people. Or he is on the computer playing computer games. Kids from the neighborhood come over, he doesn't give them the time of day unless I make him.

I'm sorry for being so long and venting. I just really feel in my heart that this is what is going on with ds. He is a great kid, but I feel that he has AS and I want that validated. I need to have someone official (I do have a friend in the field that has "diagnosed" him after knowing him for 3 years and seeing him in every situation possible, but she has no way to make it official.) believe me. Not after seeing him once when he's a perfect angel. Everyone in that store thought he was 4 years old. He's almost 8!

Thanks for listening,

Terri

Terri, mom of 12.5 yo triplets in 7th grade - ds w/ AS, 1 dd/ dyslexia and 1 dd gifted
iVillage Member
Registered: 07-11-2003
Fri, 08-15-2003 - 4:35pm
First...((((hugs)))). I'm sorry you had such a hard time at the book store. You did the right thing in calling your dh for back-up. Too many moms try to 'suck it up' and do it al themselves. Mom needs a release vaulve or somekind of line-breaker too. My dd's have done that too and it's the exact reason I don't take them with me to certain kinds of stores. It's a pain in the behind, but I actually arrainge for a sitter (usually my partner's wife or adult daughter, no one else has the courage to deal with my brood) when I want to go to a book store or other 'quite' store. They do a lot of their own book buying, but they do it through amazon.com .


As for the Psych.....unfortunately, too many drs are becoming narrow focused in the trait criteria. They seem to think that there is a deffinate yes or no to certain traits that MUST be there for a dx of AS. And while there ARE a few traits that MUST be present there are also two 'multiple choice' sections. In those sections it says two of the following for part A and one of the following for part B, not ALL of the following for either or both. One of my dd's recently say a psych who said she didn't agree with my dd's dx because she seemed to be able to carry on a conversation well enough. In truth what had happened was that my dd was nervous about seeing the shrink that she stuck to answering questions when asked and didn't vollunteer any information that wasn't specifiacally requested. The psych didn't seem to notice that she answered the questions with an 'uh huh' or 'uh uh' (not even a full yes or no) until it was pointed out to her. Only then did she (the psych) begin to see that my dd's convo skills were lacking.

One way your friend can help you is by writing a 'personal observations' report (a breif one) that you can send to varrious people who might need a kick in the rear. She should keep it simple, no more than 3 pages. I do this for kids in our co-op who's parents are having a hard time getting professionals to listen. First I introduce myself and list my qualifications w/ reference contacts. Then I include the critical list I want them to look at, in your ds' case that would be the AS crtitical base from the DSM-IV (also include a one paragraph bibliography at the end). She should make sure to remind the reader what Section of spychiatric dispipline this comes from. Then she should procceed to list the traits she sees with a short explanation of how she sees it manifest. (While little Jonny can speak on numerous issues for very short periods of time he rambles at length about his area of obsession-e.g. dinousaours, sea life, ect. If left to his own divices he will most often force the conversation to one of these topics, no matter what the orriginal topic was.) Of course, she'll want to be as unpretentious as possible as many of my contemporaries are very full of themselves and hate to be corrected.

You may need to get tough. This is actually often the case. My sister's older dd has AS and they looked and looked for years. My sis doesn't like 'upsetting' people, well, at least not professionals, lol, so she was largely ignored for a very long time. It was only after she and he XH got tough with the psychs that things actually began to happen.


iVillage Member
Registered: 08-02-2003
Fri, 08-15-2003 - 10:58pm
I think that psych needs a swift kick in the pants! Can you possibly get another opinion?

My 8 yo ds (Justin) sounds a lot like yours. (His AS was dx'd at 6) He can carry on plenty of conversations about other things than Legos (his largest obsession.)

Before we got his dx our psych gave us a booklet for us and a booklet for the teacher to fill out about all his daily "quirks". It helped the psych to be able to see him from several different view points other than him sitting in the chair (thinking to himself how bored he is) I don't see how they can/can't make a dx on what they see in their office. They have to take down info from parents/teachers for gosh sake.

Not all kids with AS have the same darn "quirks", boy that would be boring if they did. LOL



Justin used to have those fits in the stores until we had him start doing chores for money (and we pay up each time a chore is done, for that instant gratification) Now when he has money saved he looks forward to going shopping (but nags me the whole time "are we there yet?" then when he gets his toy he's ready to go home LOL.)It really has worked like a charm for us. One thing for sure that I have learned about Justin is not to grab his arm if I'm ready to go, he will go into an instant tizzy! With the book thing you could maybe try, "you can choose this one or this one, that's all we have the money for." Justin usually will choose as long as there are only 2 things to choose from. I'm sure your ds was so focused on getting a book especially if he was told he could.You might try that if you are in this situation again. Just a suggestion.

Well good luck hope you can get your psych to get a clue.

Angie

iVillage Member
Registered: 04-05-2003
Sat, 08-16-2003 - 3:47am
Hi Terri,

<<>>> Boy do I understand your situation! My ds is 9 1/2 and AS. It took us to find a dx about 2 years and finally got one 9/2002. My son's fixations are math and science very broad areas, yet very limited, no other subjects exist to him. When he was 2 to 5 years old it was batteries that he would hold and could tell you everything about them. He never creatively played with any toys, never had dreams or nightmares (unless you count running out of food a nightmare - a big theme of his nightmare)and always seems like a little old man. I can remember when he was little and something scary would come on TV, I'd be a little nervous that he would be scared. He said to me that it wasn't real because it was a tv program and not about real life. He was 4 or 5 when he said that.

The meltdowns I can completely relate to. If I told my son we were running two errands and we ran three, we had a meltdown during the third errand. He was in 1st or 2nd grade at the time. Any time there was a sudden transition, a meltdown. Someone let him down (in his literal mind), a meltdown. We had so many meltdown, his younger brother would tell strangers "he always does that".

We went thru a process of elimination until we got to AS. He has alot of obsession, but no compulsions, he has panic/anxiety, he's literal, rigid, hates anything unknown - meltsdown, freaks out in social situations, etc. But he can be pretty sociable with other kids (one on one max) because I've worked with him. He's got four very close friends that he's know almost from birth. Ironically, he's very best friend also has AS and didn't "get AS symptomatic" until he was also 8 1/2, even though he had sign as early as two. His mom took him everywhere and everyone told her she was the one with the problem, not him.

Unfortunately, many drs. don't understand the subsets of AS or that there are subsets of AS, not all AS kids have the same issues. They all have a variety of the same issues. School officials are even worse because most of the AS kids are described as "the ideal student or dream student" because the don't show signs of it in school. So then you really feel like the crazy mother when you bring their issues to their attention.

We took our son to the local children's specialized hospital and saw a developmental pediatrician. She knew the minute he walked into the room he had AS. He then had evals with an education consultant, psychologist, peds neurologist, speech eval, and ot eval all done at the specialized hospital. Each one said the same thing AS - he was 9 when the test were done.

The dr. also put him on medication which mostly ended the meltdowns - he still has them but not to the same frequency as before about 80% gone. He takes Luvox to help with obsession and anxiety and Strattera for anxiety and impulsive control (the raging angers which begin the meltdown process). He's pretty managable now although we still can't go on vacation with him.

Good Luck and keep pushing because mother's instincts are always dead on when it comes to their kids.

Leenie

iVillage Member
Registered: 03-25-2003
Sun, 08-17-2003 - 2:26am
Terri it sure sounds like AS to me. The behavior you described sounded SO much like my son, getting "stuck" on the idea of needing something in a store and getting anxious that it would be gone when he got back . . . SAME thing I just went thru only not as bad; you have my sympathy, that sounds like a nightmare!

Tigs

iVillage Member
Registered: 07-23-2003
Sun, 08-17-2003 - 10:21am
Hugs to you Terri! I have a 3.5 yr old DS, who is going to be diagnosed in December (he looks like an Aspie to me). I also have a PHD in Psychology, although I am a Developmental Psychologist, not a Clinical Psych. My business was to teach psych in a university and do research, although my most recent work was in childhood disability studies.

Anyway, I agree with several of the other posters. Go find another psychologist or a developmental pediatrician. Ask your local Autism support group, who they recommend. If there is a specialist in the area who deals specifically with ASD's, that is who you want to see. Many dp's and cp's do not have enough experience with the full range of Autistic Spectrum kids to know what they are dealing with.

I also whole-heartedly agree that you should write down specific observations, which match the criteria if Asperger's. List as many behaviors as you can under each criterion that fits your kid. Bring this info into the DP or CP, and point out the strengths your child also has (ability to camoflage his disorder, etc.). Many Aspies do not have the single obsessive focus that is the stereotype, and many are high-functioning enough to put on an act in social situations.

Ultimately what matters is that you get some kind of diagnosis that will enable you to get help for your son. Even if that diagnosis is gifted-ADHD, if you can put goals in the IEP that help with social skills, you will be getting him the help he needs.

Best of luck to you!

Suzi

iVillage Member
Registered: 07-23-2003
Sun, 08-17-2003 - 10:24am
Terri,

I found this site last week. It is on High Functioning Aspergers. It sounds a lot like your son (and several people in my family - - LOL). Anyway, I thought the info presented and the expert who put it together might give you some good ammo for your next visit to a psychologist/DP.

http://www.aspergerssyndrome.net/index.htm

Suzi