Wondering if my dd is HFA or just delaye
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| Wed, 05-04-2005 - 9:36am |
MY dd was dx back in Sept. 2004 (less than a year ago). Since then we have been through it all. She has seen a....speech path, physc therp., neruologist, allergist, just about every 'gist' you can think of. Any now she is in special preschool and doing much better socially than last year. She is more out going and talking to people when prompted. I still feed her lines to say. example: "tell him hello". ect... Anyhow since she is so high funcioning most parents I meet whose children are more autistic say "She seems ok to me".
I don't know what to think some days. My dd is turning 4 the end of October (3 1/2 years old). She is speaking much more but a lot of things she says is repeated over an over and over. And she asks all day "where are we?" even if we are at home. She has low muscle tone and some gross motor delay. She is hypothyroid (born w/out a thyroid). She loves to play w/kids. She use to line things up but since speech is coming for her now that behavior has all but stopped. Other people can understand her about 20% and we about 70% of the time. SHe is easily distracted by visual stimuli. She couldn't watch the circus because there was too much activity all over. She only glimpsed at the attractions but was more entertained by the shadows, noises and people around us. She is smart. Uses some sign language. Knows her ABC's and can count to 10. I taught her our address. She knows her parents names and calls me 'mary' a lot. ):~ She is seeming to be more and more 'typical' than not for her age. Should I get my hopes up here?
I suppose i should just have her re evaluated by the place that gave her the dx of PDD, or mild autism. Any advise or tips would be appreciated. TIA
Mary

Dear Mary,
Welcome to the board! Your daughter sounds very like my son at that age (he'll be 8 this summer), and he is dx'ed PDD-NOS. He has lots of splinter skills and spectrum challenges, but not all of them. He is considered very borderline, some evaluators would say ASD, others not. What I would like to say to you is that we have approached his treatment, without worrying too much whether he is on or off the spectrum, but instead as if he has a real need for lots and lots of intervention --- and he has blossomed and is continuing to grow every day! He uses tons of language, and has great friends and taking on more and more challenges. He studies at a school for high-functioning kids and is way ahead of grade level and LOVES school. He is developing empathy and beginning to be able to separate himself emotionally and sort himself out with more ease when up against difficult challenges.
At 4, he also had echolalia as he developed more language, low muscle tone, he was ALWAYS outgoing with good eye contact when comfortable, definitely had more trouble when overstimulated (noise for him), all the things you describe. At 4 these thing can seem pretty acceptable to people, but at 8 or 10 these differences can become much more noticeable and make it harder for the child's social life and self-esteem. I believe strongly that giving Malcolm the intensive assistance is providing him with a strong base from which to take on life no matter what his challenges will be. I would say you want to get your daughter as much intervention as you can get your hands on. The pre-school sounds like a good deal.
There are lots of ladies here with great experience and BTDT advice, so if you have questions and need more specific advice, fire away!
yours,
Sara
ilovemalcolm
Hi,
Malcom sounds a little like my son, Andy, who is 5-1/2. We had him dx'd in Dec. with HFA which shocked us. We were very much expecting an ADHD diagnosis. In the past six months we have mostly been working with the school district. They enrolled him in a 5 morning /week preschool (we had had him at a 3 morning/week "Jr. K" at a private preschool) that is for "mild/moderate delay" children, 9 out of 12 who are actually speech/language delay and only about 3 who are like Andy. He has never had a speech delay but has done a lot of echolalia. I agree, there are things that are more acceptable when they are 3 or 4 that even at 5 started to feel "weird" to us. In our case, as our DD (now 3) began to show so much awareness of the basic "big picture" of life, we realized it was easier to communicate with her than with Andy. That is probably what sent us to the child Psyche.
Anyway, I'm not sure what advice I have, I will just say that I am familiar with the borderline case. The next time we saw the Child Psychiatrist, she exclaimed "He's doing so much better!" (eye contact, social skills, which we had started working on). He had a conversation with her and at the end the Dr. said, "You know, if I were seeing him today, I wouldn't even say ASD, I would definitely say ADHD as a first-line diagnosis!" So I left totally confused.
I have done a ton of reading and Andy is one of the highest-functioning case studies I can think of. That is, in every example, I always find myself thinking, "Andy isn't quite this way, or this extreme". But when we finally come down to it, I do think that he falls on the spectrum, just EVER SO SLIGHTLY. That always leads me to the question, "Well, what do I do now?" We have him in the 5x/week preschool, which is run by a S&L therapist with a 4:1 ratio, an OT visits them 1x/week and they do PT as part of their PE program (Andy is fine gross motor wise but is delayed in fine motor, which is covered in the class).
Our next big hurdle is whether or not to send Andy to the mild delay kindergarten (which is not at our home school) or enroll him in regular kindergarten, with pull-outs for social skills, PT (fine motor) and OT maybe. It's a really tough call for us. I'm sure we'll get more feedback when we meet with the teachers and psych's at his next IEP in June, which will focus on making this decision.
Otherwise, we are just running the course of trying to socialize him as much as we can, just on our own. There is no program that I have run across that seems like something he needs other than this preschool... but then I feel like a slacker mom like there is something I should be DOING to kick him off the ASD and make him "Normal", since I feel he is so close! There was a joke from one of the psychiatrists that even if Andy technically does fall slightly on the ASD, it might not be really apparent to others when he grows up, maybe he'll just become an engineer. ! (Very funny for us esp. since we are in Silicon Valley & friends with lots of engineers :)
Anyway, there's a bit from my story. I hope this helps a little, at least to know we are in the same boat with some borderline kids.
Carla
mom to Andy, 5-1/2; Camille, 3; Sam, 1