When did you KNOW/ introduction

iVillage Member
Registered: 10-18-2006
When did you KNOW/ introduction
Fri, 07-06-2007 - 9:44pm

Quick introduction first, My name is Brook, I'm a 27 year old single mom with an awesome 5 year old girl, Emma. I'm a full time social worker for the state. Emma is 5 and about to start Kindergarten. At age three I realized we had a problem. She would have regular tantrums with biting and kicking. I got o the point where I could figure out when they would occur. As soon as we got home from any extended (more than an hour) outing, especially if that outing was to somewhere noisy. One day in January she bit me to the point of drawing blood, through my jeans. I staffed with my supervisor the next day, trying to figure out what we would tell a client to do. I called the mental health center and services started shortly there after. We did case management and received several different diagnosis. The first one was ODD, then mood disorder, then several sleep disorders, now currently ADHD. Until the last one Anxiety and ADHD were on rule out status. The ADHD was handed down with a script for Adderall two months ago. Emma's behavior has changed over the past two years, but some things have stayed the same. Since adding the Adderall some things have worsened/intensified.
She has ALWAYs has a sensitivity to sound. In the nursery, 12 hours after birth, the nurses commented on it. She doesn't like public restrooms because the toilets are too loud. She covers her ears regularly. She doesn't play pretend, she plays by lining her toys up. She's always appeared to be the popular kid in daycare. The kids come running to her, but she doesn't seem to care about them. She has to be prompted to make eye contact, sometimes to the point of holding her face.
Since starting the adderall she has become more hyperfocused. She will get so into something that she truly won't hear anything. She has also become more obsessive about finishing. If it's time to be done and she can't finish it's an all out tantrum.
Today I found out that she's been obsessed with building pyramids. Any center she has played at this week, she has attempted to build a pyarmid. This week she began making odd noises in class.
The dr's have asked in the past about Aspergers or Autism, and I've always said, "no, she has friends." Now I'm the one thinking. I've done lots of reading and it seems to fit, but I'm not sure if I'm just grasping at straws. She has a psych appointment Wednesday and I plan to take all this info to her. But before then I wanted to ask, at what age did you "KNOW" something, and what was the final straw that made you accept it?

Thank you for making it through this really long post.


iVillage Member
Registered: 08-17-2006
Tue, 08-14-2007 - 2:06pm

Alison (26) BF Dominic (28)

iVillage Member
Registered: 07-07-2007
Sun, 08-12-2007 - 8:02am

I actually had no idea until about 5 months ago that there may be a problem. My daughter is 4 1/2 and was just dx last month with PDD-NOS. She was hitting kids at school and unable to focus, obsessed with certain articles of clothing to the point it could ruin her entire day if we did not allow her to wear a scarf, hat, gloves and certain coat to school in warm weather.... now I realize how obvious it was but she is my only child. She is social, bright, and very creative, so I thought there was no way she could be on the "spectrum". When I realized her problems at school I noticed how she never asks "why", would not go potty in public restrooms anymore because of the noise, and did not know how to interact appropriately with kids her age. It's funny because I looked over all the notes from her pediatrician and she always hit her milestones ahead of time and one visit he even wrote "super-smart" on it....so it was difficult for me to pick up on.

Enough rambling...the bottom line is if you have any concerns have her see a neurodevelopmental ped, because if she is on the spectrum the sooner she receives therapy the better her prognosis.

Good luck!

iVillage Member
Registered: 09-10-2004
Sat, 08-11-2007 - 4:58pm

Hi Brook, I'm new here, for the most part, too.

iVillage Member
Registered: 07-02-2003
Fri, 08-10-2007 - 9:16pm

I've posted here a few times but not recently.

iVillage Member
Registered: 02-10-2006
Thu, 08-09-2007 - 3:24pm

I'm new here.

iVillage Member
Registered: 04-28-2007
Sat, 07-21-2007 - 7:59pm

Hi Brook,

I am finally getting low on the board to say "Hi" and "hello!" Lol

Liam (7) was my first so it was tough to figure out what was normal and what was odd. Although from the first night he began screaming bloody murder in the hospital. they "encouraged" rooming in, and I was a friggin' basket case by 4am the next morning, (finally dawned in on the nurses to give me a Tylenol 3 and take him back to the nursery for a bottle-nursing was a nightmare too, ate ALL THE TIME).

After that we ran into multiple ear infections, colds, synus infections, needed a nebulizer, had reactive airway disease (infant asthma); also dx with GERD. All his behavior was linked to his illnesses, but at about 16 months I was beginning to wonder. I took Liam to gymboree, and he was all over the place, wouldn't sit with me in circle time, was always off around the equipment just busy ,busy busy, on the go.

He was overly aggressive with his peers and by age 2 when we moved (to a county with crappy services and daycares....duh on our part) his and our world caved in. Behaviors worsened, and it was so hard to deny what we saw. I began researching and by age 3 figured sensory integration dysfunction was a given, which an OT confirmed, and we began therapy. I took him to EI, but he seemed so hf there they refused to give him services. By age 4 his behaviors had become so off the wall we needed to go the route of a pdoc and he was dx with mood disorder-nos. The play therapsit we saw suggested pdd, (I had to laugh as I pretty much always knew that). When we moved to Ga we FINALLY had a school system that cared and listened.

He got the ASD dx and placed correctly. the rest is history, life is improving everyday;) well, with ups and downs...


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iVillage Member
Registered: 09-29-2000
Sat, 07-21-2007 - 9:40am
Oops, forgot to finish my post. Anyway-DS's speech pathologist recommended him for evaluation, but the developmental ped didn't quite think he was AS at the time. We saw a psychologist last summer who gave him the PDD-NOS dx.

Lynda, Carl (12/1/99) and Erica (6/18/03)

iVillage Member
Registered: 09-29-2000
Fri, 07-20-2007 - 6:24pm

I had a lurking feeling something wasn't right by the time Carl was 2 or 2.5, but nobody agreed with me, including DH. And I wasn't quite sure myself. Iffy social skills-well, he doesn't go to daycare. Hadn't quite hit some speech milestones-well, he's a boy, sometimes they do that, right? Never pretended-well, OK, maybe it's just not his thing. Lots of extreme temper tantrums-OK, swell, I have one of the difficult ones. But every time I read "WTE the Toddler Years" etc, I couldn't shake the feeling that I had the owner's manual to the wrong model.

His conversation was more than 50% echolalia at 3.5, but I'd never heard of such a thing and I just thought it was amusing. But when he did it in front of my pediatrician, I saw the look on her face and I realized she'd just seen a red flag. She referred him for speech evaluation, and when I googled "echolalia" I was astonished when a bunch of references to autism came up.

Huh? He's not autistic. He makes eye contact, he interacts plenty, and he doesn't sit staring at fans or anything. But when I started reading about the higher-functioning forms, I had a "Eureka" moment-all of his quirks started making sense. And so did some of mine. I'm not sure I would have been formally diagnosed with anything if I'd been 30 years younger, but I did have some ASD traits growing up-I've shaken off most of them.

Lynda, Carl (12/1/99) and Erica (6/18/03)

iVillage Member
Registered: 03-20-2003
Thu, 07-12-2007 - 9:42pm

Welcome to the board, Brook.

I seem to have missed your cut-off for your appointment, which was yesterday.

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iVillage Member
Registered: 06-25-2003
Mon, 07-09-2007 - 4:19pm


I thought I had replied to you earlier but the iVillage gremlins seem to have eaten my post.

So welcome to the board!

I "knew" by degrees, I guess.


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