Teresa (baboig)
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Teresa (baboig)
| Sat, 03-18-2006 - 12:24pm |
I was noodling arond the Internet and I came across this Davis MIND institute study of younger siblings of Autistic kids. I thought of Ella:
Infants at Risk of Autism: A Longitudinal Study
This study tracks the early development of younger siblings of children with autism, children with other developmental delays, and children with typical development. We hope to learn more about the early warning signs of later developmental problems and possible genetic markers for speech and language delay. The study requires four annual clinic visits. Infants from newborn through 18 months can participate. A total of 180 subjects will be in the study.
http://www.ucdmc.ucdavis.edu/mindinstitute/research/researchprojects.html
-Paula

Thanks for forwarding that to me. Ella is now 22 months so I think she would be too old to participate in the study. To be honest I don't really know what's going on with her. Somedays I think it's just all sensory related and other days I'm sure she will also get a PDD diagnosis. There are a couple of things that make her very different than Jake, she has very good eye contact, she has no obsessions, her imitation and facial gestures are excellent but on the other hand she has more typical autistic features that Jake never had such as tactile defensiveness and she also uses echolalia.I have to say with Jake I absolutely knew from about his first birthday that he was autistic,it just took a while to get the doctors to see what I was talking about, but with Ella, I just can't figure it out?Maybe she's less obvious because she doesn't have a fascination with spinning objects the way Jake did or she seems more interested in her enviroment.I know aspie girls are harder to detect because they usually have better social skills but the truth is Jake had better social skills at her age, but I think that has to do with her tactile defensiveness.All the therapists think I'm nuts and that there is no way she's on the spectrum but I still have this nagging feeling it's something more than just sensory related.I guess only time will tell. I know you had similar problems with Siobhan. Was she tactile defensive or what issues did she have that made you think she was similar to Peter? How have you been? It must be nice to be back out in the workforce again. It's nice to see you have some free time to post hear again. Have you been home recently?I'm thinking about going in the summer if I can get a decent price for a flight. It's so expensive even though you have a place to stay but with flights and a car rental your already a couple of thousands down. Do you ever get the Schafer report? I read an article in this months issue that said a University in Ulster(can't remember which county) had started the first course in Ireland to teach ABA.That's a scary thought isn't it??? I love Ireland and it will always be home but thank god I had my kids here. I always think if I won the lotto someday I would build a center here and one in Ireland especially for Autistic kids to recieve free therapy.It's just such a shame there is so little available there. Oh well, I can dream can't I!I bet you are sorry you ever posted this.
Teresa
P.S
Happy Belated St.Pat's
I thought she was older than the cutoff. Oh well, maybe someone else on the board will be inspired. That's why I didn't e-mail it to you.
Siobhan will be 6 in May and STILL doesn't have a DX. The best they managed was 'at risk for Asperger's syndrome'.
She was evaluated at about 22/23 months. The saw a speech delay, but she didn't qualify for services. I know now, I should have waited until 24 months, when the scales would probably have changed.
I didn't even pick up on her sensory stuff, because it was very different than Peter's. The school district did. I referred her for a speech delay and 'something', as soon as she turned 3: When the lady probed,. I explained that the called her "The Wanderer" in daycare, because she never participated in circletime, she wandered around the perimiter and she melted down completely if you put her in a dress: Even if she liked the dress, you you put it on her, she would walk a step, then collapse on the floor in a heap, hysterical. The lady (who is AWESOME!) suggested an OT eval.
So she got OT and speech at 3yo
She had language delay and serious echolalia, didn't piece two words together until the St Patrick's Day Dress incident "No DESS" when she was almost 2. She had that 'something' that all the seasoned evaluators picked up on, but couldn't define. It didn't really show up in tests, but when they observed her with peers, and spoke to her, they would say "there is *something* there, but I can't quite put my finger on it" The psych eventually gave her the "At risk" classification, after I pulled him back from the front door, and explained a lot about Peter and the similarities I saw between them. He stuck his neck out, and I was lucky that he did, because that helped me a lot. I think if you come across as sincere, well read, and eager to address issues, but not to plop a label on them, it helps a lot.
How was she at that age? besise the language and echolalia: She definitely had/has auditory processing and word retrieval issues. She was often quite aloof with peers -used a lot of parallel play, or just went off and played by herself, although she was talk about her friends, (later, at 3 and 4yo) she seemed to observe them from a slight distance rather than interact with them, if you KWIM.
She was not as routine-obsessed as Peter, was always more flexible, when prepared in advance, never had food issues to the same extent, either. She didn't sleep through the night until abotu 3 yrs 3 months, after we instituted the Willbarger brushing protocol. That helped her mood and flexibility a lot (actually, having a good night's sleep probably did it, but the brushing made her sleep), but never cured the tactile defensiveness, -the one thing it was supposed to help!
The social thing: You know, that is sooo very hard to figure out. Peter is more social than Siobhan. He is more *interested* in social interaction with other kids, more outgoing (she is quiet and shy) and more engaging sometimes. However she can hold a better conversation than he can and will engage you to talk about things she sees, thinks about, or has done at school; whereas Peter talks about less real *things* a lot more; TV shows or characters, for example. His thoughts and conversations are a lot more rooted in fantasy and 'inside his head' stuff, where Siobhan is more outward-looking, and will talk about people we know and real-world stuff a lot more, if you understand where I am coming from.
She was/is VERY difficult to quantify: Sometime she seems so connected, and sometimes, especially when younger, there were lots of Autie traits. I have a feeling that her DX might end up the same as mine: ADHD-I and SID. The combination can seem very AS sometimes, but I think Siobhan has Theory of Mind, which is the defining characteristic of an ASD. I haven't told the school my theory of ADD/SID, because I know they will immediately suggest meds, and I honestly feel that if she is taught how to work with her issues, maximise her strengths, and learn strategies for her issues; she won't need meds. I take meds myself, and I know that although they can help, they are no silver bullet. And they can stunt growth and make your SID go crazy. If I had learned early how to work with my ADD, I wouldn't need meds today.
Now I bet you're sorry you answered! Just keep pushing them, nicely but insistently.
agus la feile Padraig hana (sp?) right back at ya!
-Paula
visit my blog at www.onesickmother.com