I need some clarification on these signs.

[kmintrigue]

My son is 7 and is labeled Emotionally Disturbed... From comments made by some teachers and social workers... I launched my own research on autism for my son. Frankly I have been amazed at the information I have found. I am also shocked that he wasn't labeled LONG ago. I went to his doctors with several of complaints that should have pointed them in this direction. He would have been high functioning but still some of his behaviors and milestones should have tipped them off. I am a bit confused on some of the issues that they talk about... How do you know what makes it a disorder and what make is just some childhood fetish? Some of the stuff my son does is just ODD behavior that I thought "oh that's just Tristan", but then I see the same behaviors on message boards and such, as a sign.... I wouldn't have paid much attention to all the ODD stuff if there wasn't so many of them. But I am kinda confused on what to go to the doctor with.... I don't want to look like some frantic mother. So, opinions would be greatly appreciated...

Like it says hyperactive or lathargic.... does that mean one OR the other or bounces from one to the other?
Lip licking?
No riding bike.... he hasn't been able to learn to ride and gets frustrated... but has taken up treeclimbing... to hieghts that make me frantic and I have had to pull him off several roofs.
Interest in animals? Interest in books?
Hooked on/fixated on certain topics.... he does that but the topics change over time... went thru a God stage, Monster stage... now the Yugio stage... but that is virtually all he will talk about.
Obsessive or stilted speech? I am not sure what that means...anybody know?
Jumping.... I have gone thru 4 beds and 1 chair in 2 years
Feels things... this is embarrassing because whenever we go to someones house he just walks around and touches everything in every room of their house.
Wandering.... he knows where he is going... does it make a difference that I don't?
Also he has always had a fetish for being under things... beds (I have a picture of him where he would only sleep under the bed when he was real little), under cushions on the couch, in between mattresses, in clothes baskets, in boxes... at school he sits or lays under his desk alot... like I said "ODD" behaviors.
He also has some wierd bathroom fetishes... like gobs and gobs of toilet paper all over, playing in toilet... when he has a bm it takes him 30-45 minutes and he squats on the toilet... not sits
He also chews alot fingers, toys etc.
I know my daughter didn't do any of these things and I have been running a daycare out of my home for the past 3 years and haven't seen any of the other kids do things like this.... however.... do you think they are all symptoms? Or just a kid doing his own quirky kid stuff?
I know this was kinda long.... sorry... there are just so many questions and I am not sure who to turn to.... without looking like I am crazy... Thank you in advance for any opinions or help that you could offer! KIM.... kmintrigue

[AutMom]

Welcome!
When you write ODD....do you mean odd as in weird, or O.D.D. - oppositional defiant disorder?

Alot of what you write can be autism....
My son does not ride a bike. He's been hyper and lethargic. Fixated on certain topics.

About the sleeping under cushions thing - sounds sensory....like he needs that pressure.

Well, I gotta go....I did read your entire post, but a bit overwhelming to respond to all of it.

[kmintrigue]

Thank you for answering...Yes it is overwhelming and I am sorry.... That is what concerns and confuses me. He has alot of ODD as in wierd behaviors. Alot of which I thought was just quirky kids stuff and never worried about until I started seeing these behaviors on the message boards. Still I wouldn't have worried but there is just SO MANY quirky things to be ignored. Like I said he is 7 now and I haven't been able to find any screening test for his age group. I read that about the mattresses....about being a sensory thing... I always thought he was just being goofy and annoying by doing that... Also he likes to be scratched.... most kids like having their back scratched.. but he likes first one arm, then other arm, then leg, other leg, and then his back. It is very calming for him.
I have just been really worried because he is regressing lately. We moved at Thanksgiving. He used to be in a ED program (behavior modification) at his old school and he was really doing well. Now he is back to just up and leaving the classroom, kicking teachers and hiding under tables. In the past week he has refused to do ANY written work which is odd because he used to LOVE writing and drawing... I can't even get him to draw at home. We live out in the middle of nowhere and they really don't have any programs like the one we used to have without sending him to a special school, which I heard doesn't start until 3rd grade up here (he is in 1st). He is really smart. They want to give him advanced work but they can't get him to do any of the work now so they are at a loss as to what to do, just as I am. And I am just utterly alone up here and don't know where to turn. The school wants me to put him on med's for attention and I would but he was responding so well at the other school without medication. So, to me, why put him on meds if they aren't doing all they can do to help him? So, what would be your take on that?They started him up here mainstream with an hour in resource, but the schoolboard said if that wasn't enough they could possibly get him an aide. I just hate the thought of medication. Alot of the times they say he is tired, the attention medication and hyperactivity medication are the same from what I understand so if they put him on that and he is acting tired alot now, then wont that make it worse? LOL.... here I go babbling again.... Can you tell I am lonely... LOL.... Thank you so much for your input! Your son is 23 right? is he HF or LF? If you don't mind me asking. Thanks.... Kim..... kmintrigue

[AutMom]

My son is very autistic, yet he has unusual strengths. I can't really say HF or LF I guess.

I think its good that you're considering that your son did well in another program, so meds may not be what's needed here. But its a concern that he's not doing what he used to enjoy.

Are there any physical issues bothering him? My son would no longer enjoy doing things when something physical is bothering him. We ended up finding out he can not tolerate milk and that he had a yeast overgrowth and vitamin deficiencies. By treating these issues, he began to feel better and his functioning went back up.

[Niquay]

Hello I can honestly say I understand what you are going through. Looking back over the years and realizing that something unusual should have been a sign for somebody to pick up on.

My son is 7 nearly 8 and I am having trouble getting a diagnosis as he has a hearing blockage that is also affecting his communication. My son is in his third year of school (Australia) so I am very frustrated that it has gone this far without anyone picking up on any symptoms. He has had good grades but can spend days wandering or hiding under a desk and I have only heard about these problems now they have only told me when he refused to do work or would kick and yell and carry on. I am in limbo at the moment wondering whether to be more understanding or to punish him.

As for your son I am no expert but the move you have made would probably be his biggest problem, so so talking through his anxieties about the move and new school would help.
Chin up and know you are not alone.

[kmintrigue]

Great News! I finally talked to some real LIVE people from the autism society and therapist! They told me to definately not put him on any medication until he is properly diagnosed (the school wanted me to put him on meds for ADHD)... They do think from what they heard and reports from teachers that there is a very good chance that he has autism or aspergers. We have an appointment Thursday morning. I know this does not sound like something I should be excited over, but I am so sick of everyone just thinking he is trying to be defiant and a pain in the hiney... I have been trying to tell the dr's something is wrong for years and NO ONE has listened to me! He is just different.... Or as my daughter says...."He's Unique!"....lol I would just be so happy to have that piece of paper so I can tell these people to lay off him a bit! And the hiding under things (tables, etc) at school IS a sensory issue... I wasn't sure about that one. Just thought I would let you guys know...

[AutMom]

They do think from what they heard and reports from teachers that there is a very good chance that he has autism or aspergers. We have an appointment Thursday morning..
Glad to hear that things are moving along...Good luck with your appointment!

[kmintrigue]

We had our appointment and he has been diagnosed with Asperger's... She said that it may be HF autism, but that will take some time to distinguish since they are so closely related... I thought it would take some time to diagnose, not on the first visit... should I be worried? The schools are providing a mentor for him, but it will take about a month to go thru the process and hire one. Until then he is on 1/2 days at school, since they are unable to handle him. I am in the same boat for handling the autistic behaviors, now I understand more why he does the things he does, but what do I do about it? Like refusing to do his work and hiding under the tables... I am so confused on how to handle everything... to me alot of things aren't a big deal... Like yes he has to do his work... but do I care if he does it under the table or on top of it? And then I imagine him 30 years old working in an office.... under the table and I think.... NOT!....lol But then again he isn't 30 he is 7... so where exactly is the boundries? Thanks Kim

[AutMom]

. I am so confused on how to handle everything... to me alot of things aren't a big deal... Like yes he has to do his work... but do I care if he does it under the table or on top of it? And then I imagine him 30 years old working in an office.... under the table and I think.... NOT!....lol But then again he isn't 30 he is 7... so where exactly is the boundries? Thanks Kim

Yes he is only 7 and I'd say if he does his work under the table - why not? No, I don't think this means he will always do this. Maybe he can learn to do some fun things at the table so he may get more comfortable with the table.

[BeccaG]

Hi. I'm a mom with an 18 year old son with Aspergers.

A lot of what you write about is really familiar. Not only the symptoms, but also the stuff about wading through symptom lists and saying "what does that mean?" and there being behaviors that we knew were unusual, but didn't really cause harm so...

The Diagnosis will be useful in getting access to particular services and accomodations that will be helpful. However your ability to articulate your son's preferences and needs will always be more important than the Diagnosis.

Definitely pick your battles.

Also be aware: Some of that odd behavior is self-devised coping. Our kids can be marvelously creative about that. As your child increases his coping choices, he will be able to let go of some of those behaviors (IF HE WANTS TO) and may chose to keep some, but be more private about them.

Hope this helps.

[elsayednm]

I don`t know how is your oppointment went that Thursday. I hope you find your way. I am a mom of 5 yrs Autistic child. My child is high functioning but un verbal. I want to add an opnion here is not what he has, but how you manage and control the ODD behaviour. Most of the symptoms you mentioned are closer to Autism but nothing is definite. Licking stuff is the way the autistic children discover things. Jumping from high place is their favourite game. Sucking hands is their way of self stimulation comes under it flapping hands, masterpation, cloth off, water obsession, and bottle obession. Most of them they like music very much and it is the only way to calm them down. The high functioning kids are fond of books, magazines, pictures...etc. Check his understanding to instruction. Autistic children can obey(high fuctioning) only simple instruction. They don`t understand the facial expression. They are withdrawn. They are in their own world. Sometimes suddenly they laugh or cry or get angry or happy. You can`t predict what is the next step. How about his eye contact. Are they good enough to make him understand you. Looks at you. Does he recoginzes the new comer how he meets them. You as a mom you can judge alot on things if you get the better dignose. Medication is under the his doctor control,so no harm. Most of the medication are vitamins to enhance their health + focussing and reduction of hyperactivity. I tried some of them as well and I can say it works or not but my son is less hyper now. Please let me know what has happened with you and it will be my great pleasure if I would be of any kind of help you.
Love

Nahid

[kmintrigue]

Well, they got him a full time aide.... and he looks exhausted everyday! But I recently gave in on the medication because he was having so much problem doing his work... So they put him on Ritalin LA... I don't see any difference at all... The first 2 days he was awful and nasty... 3rd day was best day ever and 4th day 1/2 day was good 2nd 1/2 awful... according to his aide... But at home I see no difference so I don't know!??! Thank you for replying... I will keep you up to date! Good Luck! Love, Kim

[BeccaG]

Hi Kim
I hope you are getting more detail than that from the aide! Hope, also, the aide has some experience with aspergers (or at least autism in general). Not much difference at home with that much change at school is probably a good sign. Whole day of school, new person to get used to, and whatever the med might be doing--not surprising he gets worn out. Establishing routine, now, may help work it out.
How is he sleeping?
Ritalin is a stimulant drug that is often useful for children with ADHD. Some kids on the spectrum have ADHD as well and it is sometimes helpful for them.
Many teachers have Ritalin on the brain and think that every child who is "off task" needs it.
It is water soluable which means its effect does not build up. What you see is what you get. Sometimes they need to fiddle with the dosage before you can see much positive or negative. But more is not necessarily better.
It is not without side effect so follow up with the Dr. to weigh risks and benefits.
SOME WARNINGS: Ritalin has street value. Children should never transport it from home to school, because there is risk of being assaulted by older kids bent on stealing it.

[kmintrigue]

No, Tristan's medication is once a day time released... He was not able to stay on task at all... He may have the Attention Deficiet Disorder, but not at all hyper. They said I need to keep him on it during the weekends too. So this was the first weekend I have seen him on it... I am not sure if I liked it or not... He spent 3 1/2 hours coloring... straight... I guess that is a good thing, but it was so pretty out I wish he would have played a little... Maybe I just need to count my blessings, I don't know. I am just used to him being a little more lively and joking around alot... He was rather quiet. He says it gives him a headache and makes him tired... I don't know if it really is or he is just saying that because he hates medacine??? We go back to the dr's in 30 days... I told him we had to try it that long and see how it works. His aide has no experience with any kids really. He is a new dad in college. However, his mom was a councilor for "special" children and gave him a bunch of books to read from her center. I was worried about this at first, but he seems to genuinely be trying to help, he doesn't at all seem to have the attitude of "this is just a job". I figure education is great, but being patient and caring and being motivated to search for soloutions to Tristan's behavior will go further. He is constantly reading and trying new tactics, the ones that work he is sticking with the ones that don't he is tossing. So he is pretty open minded. I have honestly been shocked at how well they have both been doing...LOL Tristan is now getting 90 to 100% of his work done... where before they could barely get him to do 10%. He gives him lots of breaks during the day... And you know a wierd thing that he found??? Eating! Tristan lost alot of his appitite after age 2. He has never ate breakfast and doesn't eat but about 1/2 of his meals and he doesn't snack. But he gave Tristan a snack one day around 10:30 am and he said it changed his whole mood and his motivation. So, I force him to at least eat a banana in the morning 8:15, then he takes a breakfast/snack around 10:00, then lunch 11:30, then another snack around 1:30-2:00, then snack again around 4:30... about every 2 hours or so... he was complaining so much about being sleepy. But now that he is eating more regularly in small amounts he is awake, alert and moving right along! Isn't that odd??? My daughter is 9 and she eats like a horse... it isn't like food wasn't offered... he was just never hungry... but now I tell him he has to at least eat an apple or banana to keep healthy and it makes such a big difference??? I don't know makes me wonder what all physically I should have him tested for. I had him stop going to the councilor's... I still have been unable to get her to write me the diagnoses on paper. She keeps saying she is sending it and it never comes! And getting answers from her is impossible. She just keeps telling me what books to buy. I never got any list from her on what to expect, ways to cope, anything at all. And that is very frustrating. That is the support we need. To know what is autism and what is something else. If not I am just going to look like some hypochondriac (sp), looking for what is wrong with my son. LOL So I guess I need to go to get a real diagnosis from a group or something. I don't know... I wonder how important it is really... He is getting help from the school and the fact that something is wrong is enough for them... What would be your suggestions?? Sorry I am a rambler! Love, Kim...kmintrigue