ST doesn’t want me to dx ds? | Autism PDD
I don't know. Maybe just worried about what the label might do to him in the future? But I do realize it's the choice of myself and dh on this one, just wanted to see others' thoughts.
Amber
Amber...go with your gut!!! Don't be like me, 6 years later, it being so evident, you will kick yourself. When our idiot pediatrician (oops did I say idiot) said "don't worry, he's a boy, he'll talk when he's ready" over and over, here we are 6 years later STILL getting speech therapy! If I had gone with my gut, rather than trusting that others were truly looking out for his best interests, it would not have taken so long.
I'm with you totally, I don't care either way, he's got it or he doesn't, but won't we feel better knowing for sure? And progress is progress, that's great too, whether or not there's a "label" attached....and it's not a label anyway, really, right? It is what it is! Smiley Riley will always be Smiley Riley...he'll just have a little extra help!!!
Go with your gut Amber, whatever you decide, it's your decision!
Hugs! (amazing how we second-guess ourselves constantly huh!!!)
Nita
Yep go with your gut! My ped kept saying don't worry! BIG MISTAKE. I knew in my heart he had a problem.
Nothing wrong with a label. With a label (I hear, I am new too) your child might be eligible for more services and therapies.
Mommies know best!
Yes it is amazing about second guessing ourselves! lol. And I thought I was pretty much past that. I am glad we caught things early w/ his speech. Because of my stepmom pushing me, now I feel we caught it early enough that he will progress well. He's already improved in just a few mths. In speech at least, not in everything but hey...progress is progress right! I have heard of a situation where a woman was put off like you lesley and her son wasn't dx'd until he was 5. And now he's like 8 and still hardly talking. Her 2nd son she was looking for early signs and he got dx'd and started therpies when he was like 2 yrs and he is now 4 and more advanced than the older. So the earlier the better I hear. Thanks for the advice!
Amber
I have heard of a situation where a woman was put off and her son wasn't dx'd until he was 5. And now he's like 8 and still hardly talking. Her 2nd son she was looking for early signs and he got dx'd and started therpies when he was like 2 yrs and he is now 4 and more advanced than the older. So the earlier the better I hear. [/QUOTE]
Amber I don't think you can make a comparison like that. Each child on the spectrum even same age same dx same parents can be completely fifferent even with the same therapies. AUTISM (and other spectrum disorders) affects each person in its own unique way. Each child learns differently and progresses differently...... So to say the younger kid is better off because he was dx'd sooner isnt necessairly true... the older one might have been more severely affected.
EARLY INTERVENTION IS KEY THOUGH so when in doubt check it out,... better to be safe rather than sorry down the road... get the eval and put your worst fears to rest one way or the other.
I agree Michelle. Gabe was diagnosed later than Jeffrey. They went to the same clinic. They have the same dad and mom. And even now I can tell that at the grade Gabe is in, he is more advanced than Jeffrey was at that grade.
But having your child examined by the center won't hurt anything. It will put your mind at ease. And early intervention is the key.
Tammy
Oh yes I realize that he may have been more severe and each child is diff. I just was trying to make an example about a lady that talked to me about it saying early was best. I am planning to still do the eval at this point. I just wondered why the ST was so unsure about wanting me to. What does it hurt? Why would she care so much about it?
Amber
Honestly I'm really not stressing over it. Like I said dh and I still plan to do what we have already set up. I guess I just had yet to have someone w/ a degree tell me these opinions. My ped was helpful. I'm used to telling family and friends to back off and ignoring their comments (even though it can get to me still at times), but this was a woman w/ creditials and some experience w/ the disorder and I guess I just wasn't sure what to say to her or know what to think about her opinions. She just acted like she really knew what she was talking about and admittedly I waivered a little about whether I should do the eval or might it do harm. But I'm not going to listen to her I still always believe in going w/ my gut. Believe me I do speak up for lil boy. He's my heart. And I did tell her that no matter what it wouldn't change who he is and couldn't hurt anything so I still was planning on doing the eval at this point. Thanks very much for listening everyone. :-)
Amber
Amber Im sorry but I got to thinking about this and it just makes no sense to me... What reason is the ST giving you for NOT having him evaluated and "labeled" if its decided he even is on the spectrum? Is she trying to say hes fine - just has a simple speech delay or what? I mean I thought therapists of whatever kind (ST, OT, PT etc) were supposed to be all for evaluations and proper diagnosis! An Eval WONT hurt him if hes determined to be NT, so really there is NO HARM!!! So this doesn't make sense to me...... just wondering why she would say this as well.
Amber,I think most of the moms out here will tell you to go with your gut feeling. You
are with your son more than anyone and the ST sees him all but 45 min a week.
If he is dx'd w/ ASD then at least you know what steps you need to take early. If he isn't then you can tell your ST she was right, but I would go with my mommie feeling on this one.
It was actually my son's ST who first mentioned the words autistm to us, none of the drs we had seen about his speech and hearing ever said the word to us. All his ENT dr said was "once we put these tubes in his ears (after 2 million ear infections) he will be talking your ear off", well that didn't happen even after the 4th set of tubes because they kept coming out.
I can't understand why she is so concerned about him getting an eval????
I think I understand her argument, but my ST was surprised when she found out I was arranging to have ds dx'd w/ our Child Care Center next mth. I had not ever brought up to her that I was, as I just wanted to not say it to anyone other than close family/friends until I knew what they said at his eval to not complicate things until I have to. If that makes any sense. I did put her name and phone# on the paperwork so they could contact anyone who was working w/ him...along w/ his ped.
She said that she noticed he had possible signs, but that "almost any 2 yr old could be dx'd on the spectrum because many that are that young have odd behaviors and speech delays" were her words. She felt it might be hindering to him to try to get a label on him and that he was progressing quite well w/ her so far and she didn't feel that I needed to go for such a drastic approach? I can see her point on labeling. But at the same time, I really feel he is on the spectrum. I've been spending time with other children in his age group and they act much diff than Aiden in many ways. It has made me feel I'm right about him even more.
As I've said recently, I don't really care if he is or isn't dx'd. I know what his probs and issues are and I will treat him the same either way and I happen to LOVE many of his odd quirks. But I also feel that he shouldn't be forced to be treated the same in situations like daycare (though we've yet to use that), school, etc if he actually needs special things and help and maybe doesn't understand the same way, etc.
The ST seemed to think that maybe once he progressed more he wouldn't even need the label and would not even seem to have asd, so why label him now. But I don't know how she can predict that. She only sees him 45mins a week. Yes he is improving speech wise. He is now giving her fair to good eye contact and is interacting really well compared to the first couple weeks. He has started to repeat words a lot now, and has even gained a few words that he uses himself w/out repeating...including MAMA! Which I love to hear
Also she sees him in his own environment where she plays w/ toys w/ him for a very short time. She doesn't see how difficult he is to take places or feed or how he likes to play w/ toys by himself in corners in a very odd way. When she first started coming he'd hardly even look at her or interact and often threw tantrums...even biting himself once because she wanted to read him a book and he wouldn't stand for it. I don't know how she can say that just because he has improved w/ her that he is probably not on the spectrum and just needs some more time. Or is she right? She says she has seen kids who seem to have "signs" young and then after a yr or 2 of therapy they are fine. But maybe that is to the untrained eye? What are the thoughts of you all. She wants me to stay w/in the school and not go to this center for eval. Thanks in advance for your input! Amber Amber, Regardless of what this woman said, I want to first say that the whole going with your gut thing is the most important...which it sounds like you already know :) Have your son evaluated and you will know for sure, and if he needs help, he'll get it - and that's all there is to it. Second, I really can understand how what the ST said bothered you. I went back and forth, back and forth, about whether or not something was going on with my son. Some days I was just positive, and other days I felt like I was some crazy, overprotective mom who was just nitpicking every little thing he did, and comparing him to every kid around him. When I taught elementary school, I would see the parents of some (but certainly not all) of the gifted children just completely freak out if their child got an A- or heaven forbid a B on one paper. I never wanted to be that kind of parent who just saw everything wrong. So when I finally started the diagnosing process with my very bright son, who was showing certain real tendancies on the spectrum, I was really worried about being blown off or not taken seriously - or basically treated like I was just looking for things to be wrong. Hearing something like your ST said, while it wouldn't have detracted me from pursuing an eval, would have made me feel more like the crazy mom. Which would not have been helpful for my emotional state at the time! It's so hard with the spectrum disorders because it's all subjective, so you may have an ST who thinks one way, a psych another, doc another, etc. Especially when they are mild. In my opinion though, that is why it's so important to head for the experts. Go to people who know the spectrum well, and who spend a lot of time with your child before making the call. And you can always get more than one opinion. Hang in there, Amber. I was in your spot and know it's tough. But don't wait, and trust yourself. Rachel Amber, Always do what you feel is best and right. I am fighting this battle over labeling with the school after getting a private diagnosis and then a re-eval 5 months later at University of Michigan Autism Communication Disorder Center. The school does want to label her, they arent sure and an educational and medical dx are diff. Those are there excuses. My doctors are pushing for a full day program with a autism intervention room half the day. The doctors say she does meet educational criteria. Bottom line is the reason they dont want to label her in my opinion has less to do with Megans best interest and more to do with budget and staffing needs required in the Autism Intervention room. She is mild so they probably figure keep the space open for children more severely affected. But here is why I will fight to change her dx in school to ASD and why I think you need to proceed with the eval too, we are responsible for much of the outcome with the decisions we make. No one wants to live there life wondering what if. Intervention early and intensive is the key, there is no way to know how much your child will improve with or without the label but.. At least with the label you can get more intervention and improve the chances. And what is the down side to a child getting more intervention asd or not?? I dont think there is one. I will keep you all in my prayers.. defiantely, DO NOT WAIT. my son was dx'd at 4.5, but i KNEW something was wrong. everybody told me i was too hard on him b/ my older children so advanced, that i didn't know what NORMAL was. well, keith was more than just an active little boy. i should have found out much sooner. kate Amber, Your childs ST is wrong. A child will either make the critera for Autism based on the critera from the DSM-IV or they will not. An NT child or even one that has just a language impairment, disorder, or delay will not make the critera. SURE...there are children that show certain behaviors that appear to be autistic in nature if they have these disorders but they will still not make the critera for autism. You already know that you still need to get your child evaluated. I wouldn't worry about what the ST says. Adam had a ST that disagreed about him getting his tongue clipped even though it was completely restricted. His articulation improved after surgery. Then she agreed after the progress. ST's are not qualified to diagnose and in my opinion should have no bearing on any decision you make about your child as far as evaluation goes.....Hey...that's the baby screaming...LOL gotta go..Take care, Karrie I completely agree w/ everyone who made comments. Go w/ your gut. I really think it was wrong for the ST to make a comment about how the label might affect your child. If your child does have ASD, you need to know. I remember when we were in the process of getting dd diagnosed, everyone kept saying don't worry about getting a diagnosis just focus on the treatments. I understood what they were saying, but as a parent it was terrbile to be in limbo w/o KNOWING for 100% what your child might have and not being able to dedicate 100% of your energy into researching all possible treatments. For instance, if you don't have the diagnosis, you may not be able to explorer the various therapies out there such as ABA, TEACCH (in NC), Floortime, etc. It is important for a parent to have an answer so the parent can research research and research. You may find there that your child does well w/ a particular treatment now, but in 6 mos your child may come to a roadblock so you must explorer other therapies that may work. Plus, the "label" allows your child to qualify for things a "developmentally delayed" child wouldn't qualify for through insurance, schools, charitable organizations and other government/ state assistance programs. You just need to do your research. Not only that, there is always the possibility that the doc may say your child is not ASD. Whatever the reason, you just need to know so you know the next steps to take for the best treatment for your child. Wow I was out for the weekend and come back to a lot of responses! Thank you everyone. It was helpful to hear your support on my decision to ignore the St comments (even if she may have meant well) and go on w/ dx. I think it will stop me from wondering. And as Markdad said, I think it would be easier to be able to explain to others when necessary why he is behaving in a manor that is odd. And this way also if he goes to school or a gathering of sorts I can give them info on his needs and such. I mean if he isn't nt he shouldn't be forced to be treated the same. Should someone in a wheelchair be forced to use the stairs? And I would like to know his developmental age if he does have asd, because I often feel like I'm dealing w/ a child closer to the age of 12-15 mths not 27mths. I've gotten used to it but I just wonder if the reason is his dev age is around there. He definitely has issues and specific needs at times. I'm not saying I plan to use his label as an excuse for everything, but when he starts to scream and throw a fit because of something that is very odd and irrational and someone (be it friend or family or stranger) looks at him and me odd, at least this way I will be able to explain. The closure will feel good, regardless of what I think he has. And like mentioned above, it won't change who he is or how I treat him. St I think was saying that she could increase his services w/out a dx and even said that he might get less options if dx'd. I don't know how that could be. And she did say that she did notice his lack of or fleeting eye contact, odd tantrums over nothing, pervasive ignoring (she often has to repeat his name many times to get him to respond), and strange movements of tongue and hand. Yet she said he's too young to dx and I should wait as w/ time he might progress enough not to need an eval. Oh well. I'll just smile and say I appreciate her concerns or opinions but we are going ahead w/ our decision. Thanks again guys and ladies! Amber A quick add...ST now says she thinks we should do OT regardless of what the eval says. She says she has noticed the odd things about him and his sensory issues. How's that for back and forth on her? Maybe she was just worried about labeling the whole time is all. She is kind of weird lol. But she's making headway w/ ds. Amber Actually it is not. It is not uncommon to have a kid that is behind more in one area over the other. Maybe in her opinion, his sensory issues will take longer to deal with than the speech issues, regardless of a diagnosis. Tammy Yes that may be. I wonder why she never offered this to me before or brought it up until she found out I was going ahead w/ an eval. Maybe she just wanted to watch him longer before worrying me, as I had never brought up asd to her. Perhaps now that she knew I had concerns and was evaling him, she decided to now bring up OT. It's just funny how she acted like eval'ing him would probably not be a good idea. I hear opposite w/ everyone else. I'm still confident that dh and I are making the right decisionn for eval now. Amber You have to live with the decision not her. And getting an evaluation is not gonna hurt anyone. And unfortunately it is hard to get two people to agree on anything. Tammy
We want a diagnoses, but it's mostly for our own sanity. We're just so
far gone in terms of perspective, that we have no clear concept of
where our son falls, if anywhere!
But we're aware of what diagnoses means for a 3 year old. If we visit 3
different neuros right now, we're likely to get 3 different diagnoses.
Which one is "right"? Also, if he is progressing, he's likely to be a
different kid in a year or two, possibly advanced to the point where NO
neuro would put him on the spectrum.
I see the diagnoses as important in so far as it could help you get
services (depending of course on your particular insurance/education
world), and it can help to put closure on the "not knowing" stress
(boy, do we ever have this) and the stress of family asking what's
wrong with your kid (we're starting to get this). For our family, it's
a way to deal with our own fears of the unknown. But we know exactly
what therapies he needs, diagnoses or no.
The label is mostly a convenient way for us to communicate to the
outside world why our son is so odd. If he should be diagnosed
Autistic, I for one will be happy to tell people he's Autistic! Because
he's a bright, highly functional little guy. I'd love for our son to be
a way for people who come into contact with him to understand Autism
better than they do now.
Here's hoping the ridiculous stereotypes and biases we see today will be less common when our kids enter high school.
Just a lil' note... the "label" isn't going to change who your son
is... or what you think of him.... but, the "label" is important... for
services, for therapy, for school, for financial aide. Go back
and read some of Sarah's posts from when she first joined this board
and the struggles she and I went through with early
intervention. Zach's ST was supportive, but not his other
therapists.... and we told them right where to go... because we could
careless what they think.... ST's, OT's, Special Ed teachers and such
are NOT qualified to make any kind of diagnosis about Autism... All
they have to go by is what they work with on a normal basis.
Always go with your gut as a parent... you know better than anyone.
***Note*** For those that are wondering, Sarah's computer is broken....
we are working on getting it fixed... she'll come post when I give her
a chance to sign on LOL.
Good for you sticking to your guns! You've waited too long to get
the eval for someone to dissuade you from going through with it!!
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