I'm going to have Robin evaluated for AS. Several docs and therapists have mentioned it, but with him going back to school this fall I feel we need to have a complete evaluation. If they don't find AS at least we'll have had one done and who knows what they will/may find. Robin's decided he wants to go to high school. I'm terrified it'll be a disaster, but I feel I owe it to him to let him try. It'll be good for both of us. He's very distracting to me and the kiddos that are here every day sometimes. Right now I have a 6mo and an 8mo full time and a 2yo part time. I have a newborn scheduled to start in September (he'll be 2mo then--due in July). Hopefully this summer I'll be starting college classes. Busy, busy!

Anyone have a full eval done? What can I expect? How long will it take? How should I prepare? Right now I just have a physical set up for him the 27th of next month. They said they can do one, but I'm going to talk to the NP tomorrow (I have an appointment anyway). I doubt they can do the complete eval. Maybe they'll do a mini one and then refer me out? They're also going to do a hearing test to see if that scar tissue has healed up or if he still has mild hearing loss in the one ear. Anything else I should know???

By Angellew on Wednesday, April 23, 2008 - 01:40 pm:

Susanna just had a complete neuro-psych evaluation and determined PDD-NOS. They said they would have went for Asperger's, except that she's still very echolalic. Once her communication comes up, they may change the dx to Aspergers. What kind of evluation are you talking about? With whom? I can tell you what Sue just did was two days, three hours each day, and we went for two hours before the testing and another couple of hours after the testing before the dr. would submit her final report. There really wasn't anything to prepare for?! Let me know, maybe I'm missing something.

By Cat on Wednesday, April 23, 2008 - 04:47 pm:

See, I'm not sure what kind of eval they'll do. With both the ADHD and the bipolar we had a 30 minute meeting with the doc and they said, "Yep he's XYZ". No formal evaluation or anything. Just a history of his behavior and family history. Our current pdoc thinks Robin most likely do have Asperger's but he also think the bipolar diagnosis encompasses everything else (including the ADHD, but we had that dx first, OCD, ODD and AS). Maybe I'll call him and see what he would suggest. We don't have an appointment with him until July. He thinks Robin's doing great, even when I tell him he's not. For the most part, he is--BUT he still loses it SO easily, is so extremely sensitive, little things set him off, and he gets SO angry at what everyone else thinks is little things (obviously they're not little to him!).

Robin's never had a problem with speech. In fact, if anything, his speech may be considered abnormal because he's so articulate. He's been speaking clearly in complete sentences since he was 14mo. When he was 5 he was making a card for my mom and he asked me how to spell grandma. I told him and he said, "Oh, there's a "d" in there, so it's not "Gramma" it's "GranDma"!" He really emphasized that D for years! He's very literal, doesn't get most jokes, and doesn't get many innuendos or metaphors. He's SO black and white. There is no gray with him. He also spins whenever he's on the tile floor (stimming???). With someone he knows well (family and close friends) he uses their name CONSTANTLY when telling them something. He was telling me something yesterday and I kid you not, he said "Mom" 20 times in 3 minutes! I was curious so I counted! lol Randy hates it. He has very little empathy and can go on and on for hours about things that interest him, but no one else wants to hear it! His current obsession is Halo/Red vs Blue. His current obsessions change about every 4-6 months. He could probably still tell you anything you ever wanted to know about the Titanic. That one lasted almost a year! Eye contact isn't too bad, but facial expression is almost non-existent unless he's angry or happy. He usually has a blank stare (with his mouth open--I could actually hear him breathing through his mouth from another room last night). Then again, in some areas he's absolutely brilliant! Scary-smart, I call it. I keep telling him he needs to use his powers for good! lol

I'll call his pdoc. Thanx for sharing your experience, Angela.

By Texannie on Wednesday, April 23, 2008 - 05:35 pm:

my 18 year old nephew has Asperbers. He sounds very similar to your son. He is a genius and loves to research things when he becomes fixated with them. He is very black and white. One of his biggest issues is social boundaries. He doesn't have the ability to filter out what is inappropriate to say versus what is appropriate.
He started high school and the social issues became too much of a problem. He has been going to a boarding school in Illinois, Brehm Academy, since his 10th grade year and it has been a wonderful experience!! The specialize in children with learning differences. One of the biggest things they work on is how to be a part of a community, group, family ect. It's amazing to see how much he has grown. He is even going to college next year.

By Tink on Wednesday, April 23, 2008 - 06:50 pm:

Cat, I have to admit I'm really glad that you're getting this eval done. I've thought Robin has AS tendencies but I thought I could be wrong since there are obviously other dxes. Seth had his eval done when he was so young that I'm sure they do things differently for Robin's age group. I would guess that there will be a full history taken, lots of question and answer sessions for you and your dh and Robin and some one on one time spent with the various professionals and Robin, watching him play and interacting with him. We had to rule out hearing issues so make sure they are aware of the scar tissue and the surgeries he's had on his ears. We haven't had Seth reevaluated in several years but I'm fairly certain that he'd qualify as AS or PDD-NOS at this point. Based on the traits you mention above, I'd say there are some textbook signs of AS and it may be a relief to have this identified.

By Cat on Wednesday, April 23, 2008 - 11:03 pm:

Ann, Robin's very socially inept. He says what's on his mind, even if it's extremely rude or inappropriate. He thinks nothing of telling a complete stranger "You shouldn't smoke. It'll kill you." He has no concept of "shy". I'm glad you're nephew's doing well! I love hearing success stories with special needs kids.

Cori, I'm sure we've had this conversation before. It's just with high school coming up and his wanting to go, I really feel we need this now more than ever. He's going to need all the help he can get, and if it's AS or something else, we need to know so the teachers/staff know how to deal with him. Right now with the ADHD/Bipolar dx the school thinks he just has an attitude and treat him as such. I'm not saying he shouldn't be held accountable for his behavior, but sometimes he really can't help it. Especially if he's beyond that point of no return. They don't get it. I left a message for his pdoc. He'll probably call me back tomorrow. I'll let you know what he says.

By Texannie on Thursday, April 24, 2008 - 08:30 am:

Cat, that's exactly something my nephew would do!! LOL He also doesn't understand 'personal space' and is always hugging or standing too close to people at inappropriate times.

By Pamt on Thursday, April 24, 2008 - 08:49 pm:

Cat, the speech part is what separates autism from Asperger's. Kids with Asperger's usually have above-average speech and language--it is just pragmatics, the social use of language, that is the big missing piece. I would also rec a S/L eval because they can test for pragmatics.

By Cat on Thursday, April 24, 2008 - 09:35 pm:

I talked to Robin's pdoc today and he recommended a psychologist who's really good (I've heard of him before). I called and left him a message this afternoon and he called while Randy and I were at karate tonight. He said the eval is an all day thing and if Robin's not willing or committed to doing it, it would be a waste of time. So I need to talk to Robin and get him to understand that this is important and will help him in school next year. Then I have to call the doc back.

Pam, the SLP at school has evaluated him in the past and says there's nothing wrong, but I think she was looking for the wrong kind of problems. Robin's very literal. I'm going to have to look up pragmatics. I'm thinking Tim Taylor here--"Uh, you wanna spell that?" lol

By Cat on Friday, April 25, 2008 - 06:10 pm:

We have an interview with the psychologist on the 13th. He said it'd take about 45 minutes, not to bring any other children (especially siblings) and to bring any past evals, IEP's, etc that may have testing data. He said the full eval would take pretty much a whole day and that if Robin's not willing to do it, there's no point in even trying.

Robin had a physical today and apparently we have to take him for x-rays of his knees. Dh took him and they're not home yet, but he called a little while ago. I'll know more when they get home.

By Lauram on Friday, May 30, 2008 - 09:10 pm:

Howdy. I've been MIA for awhile (years???) Just jumping in here. (Hi, Pam and Cat!) My son (now 11!) has been evaluated for everything under the moon. At this point, this particular issue is not Asperger's, but as far as what it is, that depends on who you talk to. His psychologist calls it PDD-NOS, his psychiatrist calls it "Clinical" nonverbal learning disability (he actually tests in the gifted range for nonverbal/visualspatial issues)and a man his district sent us to calls it pragmatic language disorder. If you ask me (but who ever does!) it's all the same darn thing. The experts just haven't completely figured it out amoungst themselves. I do agree he doesn't have pure Asperger's, however. He does have good eye contact and really wants to be social (just is terrible at it). His other dxes are: Tourette's, sensory, ADHD, OCD, anxiety and depression. He does have a full time aide now. I sued the district last year (probably why I have been MIA) and that was very helpful as far as getting him what he needs.

By Cat on Sunday, June 1, 2008 - 11:11 pm:

At this point the psychologist won't even do the eval. Robin's not cooperative and he said there's no point. He does agree with the dx's of ADHD and bipolar and suggested trying another therapist--a psychologist this time. All the previous therapist (that haven't done any good) have been social workers. He gave me four names and I have an intake appointment with one this Thursday. We also tried concerta again for the lack of focus and he was only on it for 10 days. It was AWFUL!!! We had two major incidents and after the second one I came dangerously close to hospitalizing Robin. His pdoc called me the next day and said give it the weekend and see if he's better. He really thinks Robin's better off at home than in the hospital. After a couple days he was fine. *sigh* I have a feeling high school next year's going to be a nightmare.

By Lauram on Saturday, June 7, 2008 - 10:45 pm:

Why are you giving him Concerta? Doesn't he have bipolar? Does he have a psychiatrist? Is that what a pdoc is or is that primary care dr?

By Cat on Sunday, June 8, 2008 - 11:21 am:

His psychiatrist prescribed it for Robin's ADHD. We've been seeing this pdoc for 4 1/2 years, so he knows Robin very well. Robin's taken concerta before without any problems. Yes, usually with bipolar drug like that aren't prescribed, but we really need something to help him focus. When I talked to the pdoc after the problems and he said not to give it to him anymore, he did say that sometimes kids with bipolar just can't handle the ADHD meds and we'll just have to figure something else out. He has and appointment with him July 9th. We'll discuss what else we can try then.

I did see a psychologist the other day that would like to have therapy sessions with Robin ONLY if he'll go in alone with her. See, we've seen lots of therapist, but Robin wants me in the room, and then he ends up just sitting there, won't talk and expects me to do all the talking. That hasn't worked. So this psychologist said she'd love to work with him, but if me being in the room hasn't worked he'll have to go in without me. I didn't think he'd agree to it, but surprisingly he did! So I'll be calling her office Monday morning and making an appointment. She's a former special ed teacher and has lots of experience with IEPs and such. We're sending her a copy of Robin's so she can look it over and make suggestions for next year. She did say if Robin's behavior and attitude towards school doesn't change, the high school he'll be going to will not be able to handle him and an out of district placement will be best (which I figured out already). I know the district will fight it, though. It's all about money. *sigh* I guess we'll have to wait and see.

By Lauram on Tuesday, June 10, 2008 - 06:26 pm:

Ugh. We just went through that fight last year. Not fun. Ultimately we didn't win an outplacement, but looking back it was the best thing that happened. I did "win" the case, just not that part. That has helped the district follow the law (for the most part) which has helped considerably. It is all about money. What has worked for my son is the teachers and adminstrator that deals with him (and the ones that don't). It is key in how he responds to school. I was clear that the school needed to respond to HIS needs as opposed to forcing him to fit within their system. It's really been a great year for him. He has one more year at this school and then he hits middle school. Dreading that. His entire PPT team agrees that those years will be disasterous.

Are there any voc tech kinds of courses that Robin would like? Our HS has a great culinary program that I think will really work for my son. They also have a great band. I've been kind of gearing him up for that. Can you look online at their curriculum or course options? What are his interests/strengths?

Bummer that the Concerta didn't work. Interesting that it had been ok in the past. My son takes Wellbutrin (non-stimulant). It's for depression but has a secondary perk that helps with ADHD. The stimulants made him wired and he lost tons of weight on them. And Strattera did nothing.