??? on behaviors (sorry...it’s long) | Autism PDD
Thanks Amber! I'll be thinking of you in September right along with us! I hope it goes well for you too.
The eye contact issue is another one!! Funny you brought that up. I never really thought it was an issue, because working with his speech we started very young making sure we had eye contact when talking to him (of course he requires constant redirection) .... it wasn't until I watched very closely how he interacted with OTHER people that I realized it IS something he's uncomfortable with. He is friendly...very friendly, but doesn't really look at anybody except us and his brothers.
I'm glad to hear that speech is going well though...so what if he only recognizes the bag!! :) At least he's ready to start!! :) And he's obviously comfortable enough with her...that's such great news!
Thanks again for the kind thoughts Amber...good luck (This!!!) month! We've been waiting since late May....When is/are your appt(s)??
~Lesley
I wish I knew! When I handed in all my paperwork and the video in July they said they wouldn't have an opening until Sept and would call me. They want to reevaluate his speech and everything. I will probably also just have his hearing checked to rule anything out. I know he can hear, but he has selective hearing. You might be sitting next to him calling him over and over w/ out response, but if you say "want a sucker" from the next room he comes running lol.
He needs redirecting a lot too as you mentioned. And his eye contact comes and goes, even w/ us. Sometimes he just won't even look at me or will go all day w/ exaggerate sidelong glances. He definitely has better eye contact at home than he does outside the house. It's probably a comfort thing. He used to not directly look at St almost at all in the beginning and would not acknowledge her when she left or said bye to him. It was like she was not there anymore once their session ended. Now he has actually waved to her before which was a huge improvment! Good luck on everything again!
Amber
Wow what a great post! This brought up a lot of interesting things for me to read. I really hope you can find answers soon. I know it's hard with so many people telling you this and that. And even though more drs and the general public are being better informed of asd w/ the news and all, there is still so much confusion and misconceptions.
With my son...I don't know how to explain it better than saying I just don't FEEL like I have a 27mth old. I should have better control over him than I do and not have to worry about him eating everything still and should be able to better communicate. I only have dd and a friend's dd to compare to I realize, and I know all children can be diff in how they develop and how fast. But I feel like I still have a 16 mth old or something in that range. Does this make sense to anyone else? Other children his age just seem so past him when I am around them. They stop when their mom says "no" and at least acknowledge when their parent is angry. My son doesn't often seem to get my serious emotions when I say "no! stop!" etc.
My speech therapist says that ds is improving. And he is in some ways no doubt about it. One thing she said though that she felt was very good was that he recognized her. Because see when she first started coming over he wouldn't interact or make eye contact much and tantrumed often. Now he cooperates most times, makes much better eye contact (except on off days as usual), and less tantruming. When she walks in the door ds runs right up to his chair and gets in it at the table all ready to go. No doubt he is starting to like her visits where he gets to play w/ toys and what not. But...what she doesn't know is that when anyone walks in my door carrying a bag he runs to the table and sits at it. So where she thinks he recognizes her, he actually associates her by her bag she carries. When my bible study comes over with their bags he runs to the table. If a friend comes over carrying a bag, he runs to the table. It's like he is generalizing and not understanding it's not his ST. I don't know if that is nt or not, but dd never confused anyone she knew her nurse and dr and babysitter and everyone apart.
The imaginative play was brought up. I don't know if ds does or doesn't. Usually he doesn't play w/ toys or if he does it's odd. Like w/ his Mr. Potato Head as example, he will pick out just all the noses or all the eyes and put them in a corner and mix them around or line them sometimes. He doesn't really play properly w/ most things. Now recently I have witnessed him rolling a car across the kitchen floor a couple times. He only does it 2 or 3 times then gets up and goes to something else. He has done what I guess is imaginative play before though, but only when prompted. Like dd has gone and got her tea set and put water in the cups and kettle and set it up on the floor. Then she calls Aiden to come sit and he does and he drinks from the cups. So that's imaginative right?
Wow sorry this got so long. This post made me think too much lol. Again I hope it all works out for you Lesley and good luck!
Amber
Thanks Jean!!!! So grateful for all this support.
See, we had just assumed it was sensory integration dysfunction period, and even when I saw how often "autism" popped up when looking into DSI, I still didn't correlate it...until several teachers said something to me and I started reading. I had to demand that he be eval. all these years before, just to get the DSI & speech dx...
That's exactly how I feel...I just want to know what is what. Even though prelim tests have shown it, I'd still rather trust a specialist...I haven't trusted any regular docs for years now....with good reason, now they just have to endure an interviewing process with me!! :)
Thanks again all...
~Lesley
One question I will ask at the end is..."Autism or not Autism?" If they tell me no then I will ask why she fits so many things about autsim. If they tell me yes then I will quit beating myself up and second guessing myself.
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Mary Not to sound critical but if I may suggest the more appropriate question may be Autsim SPECTRUM Disorder or not. If you say autism or not autism she would have to meet all criteria which she may or may not meet.... Autism Spectrum Disorder would include PDD-NOS and Aspergers. (Retts and CDD although it doesnt appear those would be the case here)
It is so frustrating knowing SOMETHING is happening with our children and NOT getting the answers! I remember taking Tyler to the child psyc/ behavioralist when he was less than 1 1/2 and she said it can't be autism, you can tell hes not mentally retarded! EXCUSE ME? Now that I know what I do about autism how does that make a diagnosis? Obviously she needed to better education in ASD's! Some doctors will be well educated in the different ASD's some wont try to check into their credentials! The child psyc my son sees right now is unfortunately the only one within 30 miles who will take his insurance. When I asked him about autism vs PDD NOS diagnosis I had to show him the DSM IV criteria and tell him things my son does that meets the criteria. After 3 visits that totaled about 5 hours of time and handing him copies of every eval ever done on my son, he agreed he met all the criteria and changed his diagnosis. Then he told me he was just a bread and butter doctor and the autism specialist did a more thorough evaluation than he could do!!! ???? AMAZING!
So, go educated in the different ASD's and speak to them in an educated and knowledgeable manner - maybe it will make a difference.
Lesley,.... Its so hard isnt it? We can all feel you here and understand!
Some of what you said sounds like Tyler... knowing when 1 little ting is missing or out of place. Tyler still doesn't really have imaginative play. Everyhing is routine things... watching the same cartoons in sequence daily... dont dare put on cartoon network saturday morning its got to be kids WB!
Tyler also "collects" things. He gets so involved with whatever it is (take pokemon for example) he has to have EVERYTHING like the cartoon... He had to have the hat Ash wears and the vest and a pokedex and a backpack and pokeballs, he also had to have pokemon action figures a pikachu and bulbasaur and charizard and and and.... When he played he re enacted the entire cartoon. Ash's actions right down to turning his hat backwards and yelling Go Pokeball! He would yell out all the different attack types and the names of all the pokemon and even the same sounds! I thought it was pretty imaginative but its NOT imaginative play. YES he has an INCREDIABLE memory which I am hearing is like a savant skill with some autistics. Tyler memorizes EVERYTHING!
True imaginative play? LOL Im not sure I would know what that was anymore! Imaginative play would be when they are playing pokemon for example and you interupt the way its being played with throwing in a twist somethign unpredictable like all of a sudden Team rocket comes and captures Ash's pokemon... What is Ash going to do? Team rocket lands in a hotair balloon on top of a building. How will ash get up there? and they maybe pretend to go to a store (by going in the closet) buying a jet pack (by strapping on a super soaker water gun to their back) and the maybe squat on the floor and pretend to blast off by standing up and climbing on the couch as if to land on top of the building. Something like this would be imaginative play,.... being able to think of something new create a different idea to act out and go with it even though it isnt following the script. (THIS totally infuriates Tyler and he will have a meltdown because for him its "WRONG")
Imaginative play is playing house having the mommy wake the kids up and feed them using a pencil as a bottle, or a tissue as a diaper... being able to find something to play without it being copying something they saw on tv and being able to use a show box as a car for example.
You mention disruptive behaviors from alot of our kids because of a change in routine and say that Riley freezes or becomes withdrawn with change. Regardless of aggression or freezing it is a RESISTANCE to change in routine, and although that could be developmental I would think it would be a significant developmental delay as Im thinking of that being typical of a 18 month - 2 year old and how they drop their feet and refuse to stand up when you have to take them away from playing and have them eat for example.
Good Luck with the Eval Lesley and plase keep us updated how it goes!
I have a few questions...we're going for our official eval. throughout September, but I'm trying to sort through all our info first, so we're ready. Again, Riley was dx'd at age 3 with speech impairment/delay and sensory integration dysfunction. His speech has come a long way...doing much better, and DSI has worsened over the years...or become more noticeable I guess.
In many many ways, I'm so grateful for this board...so many of you have shared your stories, made things make sense for me. I was told a few years back he's not Autistic because he hugs us...or looks at us. OK, well now I understand that some kids do, some don't, it's just another misconception. He has tested (through school) as autistic, but we're still taking him for official evaluation by both a neuro and child psych. who specialize in this area. I had no idea what echolalia was, with everyone's stories, I see it very clearly now...I had always thought it was just that he was so behind in his speech, that it made sense to him to communicate that way....which is true, but what I'm having trouble understanding is where the line is between DSI/developmentally-language delay and autism.
Here are my questions...he's 2 months from being 9, and things are SO noticable when he's with others his age...it's always been like that really, but one area I'm wondering about is in the area of "imaginative play". Riley has a million toys...he's always been a fan of "collections" but rarely plays with them...wants them initially but here's what he does:
It used to be "teeny tiny legos" that he would use to play out scenes from movies etc. Right now, it's pennies, nickels, dimes, quarters. He keeps playing "lord of the rings" but uses the coins instead of the actual action figures he has. Now, it IS imaginitive...I have to give him that...but I don't know if it "qualifies" as it. Anybody have any ideas? The nice part is that he's not just lining them up anymore (not all of the time anyway) they kind of go in 'herds' sometimes now as opposed to lines. Does it count as imaginative if he's reenacting scenes? or is that just his incredible memory? which he does have. Last night, he started crying that a penny was missing...there were no less than 100 on the table...but he's crying about one. I snuck one from the table and said "is this it?" NO! I eventually found one in the hallway, and it was the one he was looking for. I still don't understand this little talent of his...he's done it over and over, always knowing when something is out of place or missing. ANYWAY, what are some examples of true imaginative play?
There is not much flexibility in what he does...he's a tried and true routined boy...whether it's the way he plays or how his days shape out. This is another question I have. I understand a lot of you deal with disruptive behaviors when routines are changed, or when your kids become frustrated. Is this another part of the spectrum? Riley isn't disruptive, he "freezes"....becomes withdrawn, won't talk, or cries. Is this developmental related? or yet another end of the spectrum? (he's around 4-5 years many areas, 3-4 socially) I know I should just wait for the appts....but I've been told so many times by doctors "well, he's a boy, they do that" yet by his teachers and therapists, "we think he's on the spectrum" that I just am dreading seeing another doctor and be told I'm paranoid or overprotective. So like I said, I'm trying to "understand" more of the "Riley-isms" before I go lay them on someone else.
I thank you for reading this long piece...if you made it this far! and I appreciate any input you have. (I have by the way studied the DSM-IV criteria...and can say without a doubt that he fits that at least on the minimal level, but again, I'm no doctor....certainly if I'd have known that criteria 5 years ago, I wouldn't even be questionning, but he's come a long way since then).
Thanks again,
~Lesley
It is hard to watch our kids playing and thinking they are getting it and then to realise that they are just acting out scripts from movies. I can remember when I would think that my son had done something original and then I would see a cartoon or movie that he had taken it from.
If you do the questionnaire (spelling?) at www.childbrain.com and read all the explanations for each question it does explain a lot of the behaviours. It probably wouldn't hurt to take it with you to the evaluation.
I realise how hard it would be to face the diagnosis when he has improved in so many ways. I don't think that even when we are sure of what they will say that it still doesn't come as a shock.
Good luck with the evaluation. I hope that Riley doesn't find the process too stressful.
Oh my goodness...I saw a glimpse of my future when I read your post. I hate living in this limbo, is she isn't she? Seems that is what your still going through with Riley.
I video taped Anna for our next eval. And I am making a list of points to talk about w/her thearpist because I know I will forget.
One question I will ask at the end is..."Autism or not Autism?" If they tell me no then I will ask why she fits so many things about autsim. If they tell me yes then I will quit beating myself up and second guessing myself.
Part of the problem is when people say your child is typical or they are just a little behind, that isn't autism...but like you said the things they do aren't typical and only the parent really sees that. And when they are next to someone their age who is NT then it is very obvoious it is more than speech delay.
Sorry I am not as helpful.
OMG! I am so glad that I am not alone! I dont feel alone anymore!! I took my son to his first Child Psyc. when he was 2 1/2 and she said he was just a boy basically.. thats what everyone has always told me.. he is a boy he will grow out of it.2 years ago I finally couldnt handle all of it anymore and the school said they thought he was stuck in his terrible two's and that he might have ADHD so I told his ped and they referred me to this psyc. who diagnosed him with ADHD and ODD. Last year they made a diagnosis of PDD without telling ME! I found out this year! And now we still don't even know if he really has PDD or if its AS or WHAT???? I hate this guessing game! UGH!!! Im just soooo glad Im not alone!!
God Bless all of you wonderful Moms and Dads out there!!!My pediatrician was also very "wait and see, he's a boy" when I brought her my concerns, but I just pushed for it. I knew something wasn't right and I wasn't satisfied with her saying "he looks okay to me!" And then when we brought him to the Developmental Ped when he was almost 2, the first thing she said was "he's not on the Spectrum, he's making good eye contact and responding to praise." Then six months later the same doctor had to reevaluate her original diagnosis, and I was SO mad at her for the longest time. As if it was her fault, right? But she was the one who had said he *wasn't* autistic, how could she change her mind??
Sorry for the mini rant....
What a bittersweet post for us all! I had to go over my Ped's head and get my son seen and I felt angry at her! How could my son have autism? She PROMISED me he didnt and she told me I needed to give him his shots because they did not cause autism and he would not and did not have autism. He was a boy, slower to develop and very spoiked by his doting parents. SHE LIED TO ME and boy did I waste a lot of time hating her.....Childish? You bet, but it was the only coping mechinism I have.
The imaginitve play is a thought provoking question. I always considered it more like the box is a car and pretend food and car rides and things like that, but since my DS doesnt even plau with his toys, I dont know.
about the routine, this was one of my first clues that my DS had a problem. WHile all children thrive on structure and routine, my autistic child simply can not cope with change, there is a difference in how abn NT child would tantrum and how my DS would tantrum. My son looses the ability to calm, I dont even think he really hears me when he gets past a certain point, then when it is over, he can be calmed and comforted, or (with luck) I can see it coming and divert his attention and make it not happen.
What ever the outcome, you want to know what is what with your child and you are doing the right thing. I am cheering for you and DS!!!!!!!!! We are in your corner!
Michelle ~ OMG! The cartoons...I KNOW!!!! Riley also had a little rubber charizard that appears in his hand in every photograph from 1-5 years! (now it's a stuffed dino named "toothy"!) ......And the memorization just amazes me to no end! Studying spelling last year (the only area he excels...of course don't ask him what they mean) he would memorize the entire list, and if we tried to test him out of order, he'd tell us...usually, he'd just spell one word after another till done...amazing!
Thanks for the input...I keep thinking well maybe it IS just severe sensory issues and major delays...but there seem to be SO MANY things that fit what so many of you all say and everything I've read. Thanks for the examples of play too, I guess I certainly did forget what that was like (next oldest is 12) and you're right...his is definitely not imaginative play.
The one that really had me was behavioral issues...like I said, he doesn't "tantrum" in the way people expect a tantrum...but when he freezes up, there's no budging...so I guess it is a tantrum of sorts. Again, I'm amazed at the differences AND likenesses in so many of our kids. How complex this all is.
And yes, let's just be done with the whole "boy" thing...I think we all vote that it's got to go! But true it is that they change so much...I swear ST and OT have been a huge help for us the past 5-6 years!...don't know where we'd be without it.
Thanks again for your replies...it IS nice not to be alone!
~Lesley
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