Cross-posting..sorta OT: A ??? about the Big A

[TheOtherVillainess]

Because I know NOTHING about this and I"m extremely curious. When I think of Autism, I think of Raymond (Dustin Hoffman's character) from the movie "Rainman".

Plus..I'm a tad worried. Just a little. I've heard that autism first manifests itself in a variety of ways,including a lot of arm-waving and/or hand-flapping. DS is constantly raising his arms and slapping them down which I've never seen any other kid do. So it's got me a tad concerned that this could be the big A. And I don't know what to look for to know if it is..or what questions to ask his pedi to see if he thinks it is what I think it is.

*eta---he responds well to verbal cues and loves to interact with anyone who'll interact with him (playing games and what not). I'm probably just being paranoid..this being my first attempt at motherhood and all. So If I sound paranoid..tell me. I think I'm freaking out because every time I turn around autism is in the news again..now that it's an 'epidemic' and every kid in the world seems to have autism.***

TIA.

TOV

 

[Odie]

Being the parent of a 6 y/o autistic son, I'm probaly more pessimistic than others when it comes to deciding whether or not to seek further evaluations. If you're concerned get your son an evaluation. Time is truly crucial when it comes to Autism. Bluntly, most Peds. will says it's you, you're being paranoid, etc...we heard it all. We finally had to demand a sit down with the Ped. to get a referal to Children's in Phila, PA. Our suspicions were confirmed, but yours may not be. However, you must at least get the evaluation done at a good place to know for sure. I hope all turns out alright for you and don't hesitate to ask any questions. We've been there and done that for the most part.

 

[DisneyDreams4P&B]

My DD5 was diagnosed this year with HFA (high functioning autism). He is nothing like the Rainman character. In fact he is extremely loving, loves hugs and kisses and is very social. He does have a speech delay but that has improved a million times over since he was diagnosed and has been attending a school with a program for autism. He does do the hand flapping (called stimming) but is not what you would call a"classic autistic".

If you are concerned I would urge you to talk to your doctor and ask for a referal to a neauroligist, who can best determine if your child is on the autism spectrum (ranging from PDDNOS to classic autism). We were told that my son just had a speech delay for two years, I tried to get them to understand that I KNEW there was something more to it. It wasn't until we moved to another state, that I got someone to listen. Now he is getting the help that he needs. While autism does rob you of some dreams you may have for your child, it isn't a death sentence and it isn't the closing of their future. I have learned that after you mourn the diagnosis, and you open yourself to the wonder of your child, that you learn that their autism makes them the special person that they are, like our eye color, laugh and way we look at things makes us who we are. While I hate the struggle my son has to endure, I wouldn't change who he is for anything in the world. He is a sweet loving and gentle boy who touches the heart of everyone who meets him. I hope that you get some answers and please let me know if you have any other questions or I can be of any help to you.

Jenna

 

[TheOtherVillainess]

Alright, I'll talk to his pedi about my concerns at the next check up (his 14 monther, I think it is..). See what he says about it. He's EXTREMELY willing to put up with my crap, as I am a first time mother who is paranoid about EVERYTHING.

TOV

 

[Brightsy]

Like thers have said, follow your gut. Don't worry about being "paranoid." If I'd followed my gut and didn't think I was paranoid my little guy (I have two boys, one is almost 6 w/ ADHD and my "baby" is 3 1/2 HFA) would have been diagnosed at 18 months! As it was he was diagnosed at 26months. I Was lucky that people listened to me, once I started talking!
Whenever a parent tells me they even have an inklinf of concern that their child might have some developmental problem of ANY kind I tell them to talk to their Dr. It's better to go through the troubles of an evaluation and get a negative than have a diagnosis missed and the child doesn't get the help that's needed.
My DS is a sweet boy. In some ways his ASD may be a gift of sorts. He's got this... air about him, this sweetness that touches everyone. There's a sense of innocence about him that just permeates the atmosphere. That's not saying he doesn't have his monster-moments. He sure does!
Like the time as WDW Epcot when we misread his signals and he entered a full-blown all out meltdown! I swear people must've thought we were kidnapping my own son, he screamed and fussed so much! *shakes head*
Anyways, have you son looked at. And if it is "The Big A" it's not the end of the world, it's simply the door to a different one.

Sara

 

[Mellie0119]

OT- Just a question from someone "in the trenches" how many doctors/evals did you have to do with your children before you got an answer that you finally felt was right? We've been through 3 different evals (ECI, and 2 private evals), and I'm still looking for answers. The last eval suggested that he had a Language Disorder NOS for the officail diagnosis, but with PDD tendancies. Not enough to qualify him for services with the school district, except maybe Speech Therapy. I didn't feel like I got a good answer, the guy who did the last eval (PhD) seemed to mainly focus on the Language aspects, a little fine motor skills, but not much else- that's my interpretation at least. I'm sure they can make some inferences from the testing that they did into other areas. I'm just so frustrated by this whole process! I just want to get a complete picture of where he is at in each category, (language, fine motor, gross motor, self help, emotional/social, etc.) I feel like we've gotten the same run around every time, it's like no one is willing to stick their neck out and say he has "XYZ". Is this the norm for the process?

 

[Brightsy]

I was lucky w/ my DS. At 18 months we, his Ped and I that is, noticed he wasn't all that verbal. Still we were cautious and decided to wait and see. I wish I hadn't but ya' never know. Anyways, at 24 months we were all very concerned that he wasn't talking and that he'd actually lost the few words he had. So he went to get a hearing test. That took 3 weeks to get done *sigh*. After that came back w/in norms we took him to a speech pathologist who then reffered us to a child psych. That was another 2 weeks in the doing. During which time the state of HI got services started for my son even though we didn't have an "official" diagnosis. The child pych. spent an hour with us and then 30 minutes with DS one on one and gave us the diagnosis of ASD. He told us he felt my DS is high functioning (which he very much is) and that he wanted to do a group study w/ my son. So by the time DS was 27 months we had it all "official." I haven't had to do too much struggling for services for my son. It's all been well handled by the people who are supposed to handle them! I feel very lucky! Even when we moved to FL from HI things went pretty smoothly. I AM having a difficult time getting DS into speech therapy at the moment but that's all do to insurance stuff, I can handle that. Just gotta persevere!!!

Sara

OT- Just a question from someone "in the trenches" how many doctors/evals did you have to do with your children before you got an answer that you finally felt was right? We've been through 3 different evals (ECI, and 2 private evals), and I'm still looking for answers. The last eval suggested that he had a Language Disorder NOS for the officail diagnosis, but with PDD tendancies. Not enough to qualify him for services with the school district, except maybe Speech Therapy. I didn't feel like I got a good answer, the guy who did the last eval (PhD) seemed to mainly focus on the Language aspects, a little fine motor skills, but not much else- that's my interpretation at least. I'm sure they can make some inferences from the testing that they did into other areas. I'm just so frustrated by this whole process! I just want to get a complete picture of where he is at in each category, (language, fine motor, gross motor, self help, emotional/social, etc.) I feel like we've gotten the same run around every time, it's like no one is willing to stick their neck out and say he has "XYZ". Is this the norm for the process?

 

[s&k'smom]

Mellie talk to other parents who have children with the diagnosis as they may know someone with a lot of experience with Autism. They usually know who you should go to and who you should avoid. Take care.

 

[Mellie0119]

I'll put a call in to a friend, that's a good idea. Jacob is verbal, he has a huge vocab, but him actually using the words in a conversation that's not echolalia or scripting is more the issue. I'm frustrated b/c the PhD seemed so stuck on the language aspect and ignored so many other issues, at least IMO. Thanks for the advice!

BTW- any good message boards that I should be surfing?

 

[twocjsmom]

As a school psychologist, I hear way too many stories about parents and doctors alike taking a "wait and see" approach. If you have concerns, bring them up, now, amnd if your pediatrician doesn't follow through, ask for a referral. I recently went to a conference by First Signs (www.firstsigns.org) in which the purpose was to help inservice doctors, other clinicians and parents of the early warning signs and procedures to follow in case of concerns about any type of spectrum disorder. Their website has a ton of info for parents. Your pediatrician may be aware of their initiative, as it is a new national project that is currently travellng state to state to build awareness of identification of ASDs early on. Good luck!