Frustrated with Evaluations...

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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Frustrated with Evaluations...

Postby MamaSquirrel » Thu Sep 24, 2015 10:01 am

Hello! I'm new here and would just like to begin by saying thanks in advance to anyone who is able to read this and/or share any insight or opinions.

Our son turned 3 in July. We've known for a while that something was "off" with him... He was delayed to talk, never smiled/reciprocated interaction as a baby, delayed walker, food texture issues, etc. After some intervention from Help Me Grow (including a speech therapist once a month), he began to talk. Now, he has a rather precocious vocabulary. It's not uncommon for him to say things like "The bridge collapsed! My excavator fell in the sea!" Over and over again. And over again... He repeats himself frequently, even when his comment's been responded to. He will play with me (cars, construction site, train, etc.) and his older sister (she's 5) but other children seem to be invisible to him. He couldn't care less if they're around and won't play with them at all. He also repeats things he hears others say or from TV shows whether it's applicable to the conversation or not. "Here comes the thunder!" when he's mad, it's from Dino Trux on Netflix... Or "Pineapple lives in the sea!" when asked where he wants to go for dinner, etc. He can also be aggressive and appears to have little to no empathy for others. He likes to kick/swing his leg repeatedly, or spin in circles, and will bang his head against the wall or hit himself when upset or bored. He also frequently scratches other people and then runs away from them... There are other odd behaviors/traits we've noticed, but believe it or not I'm TRYING to keep this short. :|

At his 3-year well check, his pediatrician gave us referrals for developmental pediatrics as well as evals for speech, OT, PT, hearing and feeding. Hearing was passed with flying colors, but all 4 of the other evals showed deficits and therapy was recommended. However, at our developmental pediatrics appointment, the nurse practitioners said they have "NO" concerns about ASD whatsoever, because he plays with me and can talk well. They even claimed he was "interactive" with them and made "good eye contact"! (He did not, I was in the room the whole time and when they would try to talk to him, he wouldn't even turn his head in their direction, or if they were in front of him he would just repeat something/phrase his answers in the form of the dump truck he brought along with him.) They told me he might have a touch of anxiety (anxiety? the boy is constantly neutral and rarely shows any emotion whatsoever. Even at his bday party, he did not smile or show any enthusiasm for any of it, not even the giant bulldozer he got or the cake/candles etc.) and is "developmentally delayed" but that was it. I pushed and pushed for a more in-depth review and testing, and he will be seen by a developmental pediatrician and psychologist in a month for an "autism test"... Possibly the ADOS? I have no idea... They filled out a developmental questionaire as part of the eval that day, and he showed "definite dysfunction" in communication, social/emotional and adaptive behaviors, being in the 12th, 3rd and 4th percentiles respectively. He scored "average" in the other areas.

Anyway, they made me feel like I'm crazy for even considering he could be on the spectrum... Do children with autism ever play with their children? Are they all non-verbal or something? Do you have any thoughts on them brushing off my concerns, perhaps I AM overreacting/crazy?

I apologize for the novel, and again, thank you for any insight you could share. Maybe I just don't know enough about ASD (though I have done a LOT of research/reading/conversing in the past few months) and children who are on the higher end of the spectrum don't need/deserve/receive a diagnosis? If the DSM hadn't changed, we would likely put him in or around the Asperger's category.


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Joined: Thu Feb 11, 2016 1:07 am

Re: Frustrated with Evaluations...

Postby Drummerdad85 » Thu Feb 11, 2016 1:55 am

My son is only 19mnths but i have the same concerns as you. I just posted my story. Im new here and weve only just started with help me grow ( ohio ) but his occupational therapist is through the county, not help me grow. But same not one doctor so far nor evaluator not even the OT has mentioned anything about asd. I find it odd and infact the one lady got quite offended when i brought it up.

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Joined: Sun Feb 28, 2016 6:29 am

Re: Frustrated with Evaluations...

Postby stellarstarmomma » Sun Feb 28, 2016 9:13 am

Hello, thank you for sharing. The entire process can be so frusterating and at times so repetitive...the same tests over and over, so much paperwork. I'm so happy your 3 old has such an awesome vocabulary! It sounds like he talks a lot. With some of the behaviors you have described it's possible he has asbergers? If you don't mind me asking, is he sociable with other children? My daughter was recently diagnosed with a mild form of ASD. Me and my husband knew she was a little different because her twin sister was talking and seemed much more advanced with her speech, and social interactions and reactions. We voiced our concerns to our pediatrician and he also observed her development since birth (both twins were full term, very healthy almost 7 pounds each and started walking at 9 months.) He observed her behavior and talked to her, did some little social tests and she would look him in the eyes without a problem but didn't really react to his questions or want anything to do with him. He gave a respectful medical opinion and told us she might have autism. He referred us to neurologist. I was in tears, scared, worried, stressed, you name it. I thought she just had speech and bearing problems possibly. Hearing problems was ruled out, got her and even her sister tested. So then we saw the neurologist. I wasn't able to attend but my husband took her and his experience was so unheard of I have to share! I'm sorry if my story is so long, I'm sure you'll stop reading if you've already stopped by now but being in the subject of diagnosed and doctors...I must share...anyways my husband and daughter are at the brain Drs office, waiting in the exam room and the dr strolls in, slams the door and just fills the exam room with so much emotional annoyance that my husband became really anxious. He told me that the dr then started asking very short questions in a rude manner: Why are you here? What makes you think your child has a problem? Is she in therapy? No? Why not? My husband told me he was stuttering at this point and so nervous, he looked at our daughter, reading a book, who seemed unconcerned with the discussion and didn't even bother to notice another person was in the room. The doc suddenly got up and left the room, even closed the door. He then returned to the room with a huge goofy smile and started turning the lights in and off which caught my daughters attention. He then approached her with a silly grin and started talking to her with high times and low tones, and was very comical. My daughter was fascinated, she gave him high fives, said hello and laughed at his silliness. He did some little tests, made her eyes follow a bright little flashlight and talked to her a little more. When he was done, he turned to my husband and said your daughter definently has autism. My daughter at this point went back to reading her book and the dr explained that she lacks a sense of emotions in other people but is very interested in her surroundings. My husband explained she likes to explore and twirls around, is in her own little world, and hills usually very happy and silly. He explained that her speech delay is related to her undeveloped sense of emotion and suggested aba therapy, and speech therapy. The dr also explained that when he first entered the room and exhibited hostility towards my husband, he was testing to see if my husband was possibly autistic and he wanted to test his sense of social queues and also wanted to see if our daughter picked up on his dramatic appearance. My daughter has yet to begin the therapy and we are in the process of assesmants and all that fun fun stuff with the enrollment process at a very special school for autistic toddlers. My daughter expresses emotions of mostly happiness with a few horrible temper tantrums daily but she is starting to talk, and is recognizing emotions of sadness, and fear. I was so afraid she would never even talk, and now everyday there is an accomplishment she has met and its celebrated. All of this therapy, and testing will be worth it in the end.

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