The most annoying/maddening thing you've heard after diagnosis

I just heard number 3 with the exception cartoons! Too funny! Glad you can use your sence of humor!

I'm so glad he's doing well! It's really upsetting that they were so negative! I'd be so upset if they kept trying to tell me that my child was going to die at any moment.. especially when they so obviously didn't have a clue!

Same here... I don't care what the IQ tests say, frankly speaking. My brother can handles computers with even greater ease than my parents; he is more understanding of even emotional undertones (like when my dad is upset or something, he knows to a point). He is very good at maths and understands concepts once they are explained in expressible terms. Language is the problem. And I *hate* the word retard in any sense of it.

Thank you for that last bit- re comfort and support. I have only been on mylot for a month or so, so I don't really know what's on here in terms of that. But it's nice to hear others share their experiences. :) When my son was diagnosed by the psychologist at his special preschool, he'd already been seeing various therapists for a little less than a year. They all told me there were some red flags, but that they would be surprised by an official diagnosis (I'm not sure why they would say that, if they saw red flags- if it was just because they couldn't tell me they think he did have it, since they aren't the ones who can diagnose). The psychologist visited with him in his classroom I think a couple of times, then came here to the house to do an ADOS test, and then my husband and I also provided her with a huge questionnaire, based on his behaviors. (There are also definite issues with hyperactivity, attention deficit, etc) After giving us the diagnosis, she said that she would recommend us informing the pediatrician, because it would be helpful to have medical testing done (for Fragile X, etc..), to make sure there weren't other issues going on with him, contributing to his delays. (I contacted his regular pediatrician, but I don't think she really understands Autism, as she seemed clueless when I kept mentioning his delays when he was younger- and she'd probably refer us to somebody else anyway. So I took the advice of the Behavioral Support Person at my son's school, and contacted the Autism Clinic at Children's Hospital). So he has an appointment for early Jan. This is with a Developmental/Behavioral pediatrician, who says they're going to run chromosomal tests, a full cognitive, and something else which I can't think of. So I kind of look at this as both a continuation of what was previously done, and also (for my husband) a second opinion. I'm glad your daughter is making such strides. I've been working with the Behavioral Support Person to get ideas of how to work with my son in terms of his meltdowns. Boy are they frustrating! LOL (So both our kids are computer whizzes, eh? :) )

Most of the kids I know seem to be pretty good with computers and here they are all very into Japanses anime and Pokemon video games. They don't get social cues all that well but they really know how to interact with technology that's for sure. Sounds as if you are on the right track going to a place that specializes in Autism. We have been involved with the Southwest Autism Reource and Reasearch Center for years. She does carry the Fagile X gene as does her older half brother, but their father would not submit to the test and refuses to have anything to do with the Autism part of their lives, so we don't have much to do with him. My SO has been a very good father to her so it's not an issue for me. Here in AZ, my daughter qualifies for many services through the state, incuding respite (for me) Habilitaton, PT, social skills etc. Hopefully you will qualify for these as well. I don't know how active some of the other parents are on here anymore, many became inactive when myLot grew so quickly, but there would be threads though at least 4-5 month's old. But I have talked to quite a few wonderful people through myLot.

I realize people are trying to be helpful. Obviously they don't want me to be concerned that my son has anything wrong with him- so they tell me stories about how somebody they knew didn't speak til they were 3, then suddenly said a complete sentence having never spoken a word previously. I appreciate where the thought behind those comments come from. On the other hand, when you're a parent who has a strong sense that something isn't right, it isn't all that reassuring. But luckily for me, I chose to push forward despite the reassuring comments- even from his pediatrician who kept saying "I really don't think it's Autism". Here we are, with a diagnosis. I do know about Autism and the different degrees. I have a cousin who is on the spectrum. My son is actually considered high functioning, and actually speaks quite well now compared to 4-5 months ago. I am not concerned about what he will or will not be able to accomplish when he's a teen or an adult, because the amount he's been able to accomplish just in the last year has me floored. :) I hope your granddaughter is doing well!

checkNitout.. you know, for all the family members who say "oh, i'm sure he's ok. i don't even notice anything's wrong with him", there is my husband who has probably had the hardest time dealing with the diagnosis. i think the word itself freaks him out. he hates the label (although this book i'm currently reading says basically forget the label if you want, but you still need to address the problems). he doesn't want people to hear "autism" and then automatically treat his son differently. he's afraid of a lot of different things.. and says "but i bet i did that when i was a kid!" however, he has later said to me that he thinks he knew well before even i did, that there was a problem. he told me that he also has a cousin with autism, as i do. i think he goes back and forth with how he feels about the diagnosis, much less about how we should handle it.. so he lets me pretty much deal with all the therapy and school stuff. i think seeing the changes since starting early intervention has made him feel good about what we are doing for our kiddo. :)

I am in the same boat as you sylviekittie. everyone is making it out like I'm being a bad parent because I dare to think something is wrong with my son. And god forbid I take him to see a SPECIALIST. The word autism is like a dirty word around here that they just refuse to say. I haven't gotten a definate diagnosis of autism yet they want to see how he developes over the next 7-8 months because he has only a few autistic characteristics. I just wish people would understand that I would be being an irresponsible parent if I didn't do all I could for my son whether he has a problem or not, he will be getting speech therapy and education therapy. That can't hurt him no matter what the diagnosis turns out to be. I think what bothered me the most was my mother in law said " I just don't want them to change him. " Talking about the developmental pediatrician and the rest of the evaluation team. I was like for heavens sake they aren't gonna do shock therapy or anything. And get this after we got back from the evaluation where they ask about family having development problems and all that, She tells me that my huband was slow to talk and she thought his pediatrician was worried about him being autistic. I asked her what came out of it? SHe said I never took him back to that doctor. Mind you this is after we've gone through countless evaluations and filled out tons of forms and now she decides to tell us that. That is important information and it's like she was embarrassed to say it. GRRRR.

Stimming is any repetive motion be it rocking, flapping their hands or in my daughters cse, flicking her fingers around her face. Especially when she is over stimulted, it's a way of releasing built up anxieties and expressing excitment. I think their are still to many "professionals" out there who think if a child doesn't rock or bang their head they are not Autistic. What I have learned through doing behavior assesments with Dev Ped, is that the real first sign was the afternoon crying jag she had as an infant, every afternoon for about 2-3 hours until she was about 9 months old. Drove us plum up the wall as there was no consoling her and even the doctors at UCLA could not figure it out. But it was a way to release (or stim) and comfort herself. For about the last 10 years she likes to lay on the floor and stare at the ceiling fan and rub her tummy. She has other spinning behaviors that I do try to discourage as I am afraid she will get hurt. We now live in a rather small town and everyone here knows her and thinks nothing of her perseverative behaviors, prancing on her toes as she walks or stimming, so I don't try to discourage those anymore. Your right that there is no "look" except for in photos, she always has a frozen look on her face as does several other children I know with Autism. As for what other people would say to her (usually in the beginning of a meltdown) about behavior, her older sister would just look at them and say "she has Autism, what's your excuse?" lol

You're so right- there is no look! My mother in law has actually been really great about the whole thing. She keeps telling me about this lady who is on her local news station. The woman has two children with Autism- one is severe (and may need to be institutionalized), and the other is mild. My MIL was saying that one of these boys does the rocking motion back and forth. I forget what this behavior is called? (Is this stimming, or not?) But I was reading a book and it said that "flapping" is also kind of similar behavior to the rocking motion. My son has been flapping his hands since he was little. I always thought it was odd.. even funny/cute at times.. but didn't realize it was considered an Autistic trait until recently. Amazing all the things you realize were "red flags". Stuff you noticed, but nobody else did.

It really is amazing how many behaviors really were indicators for autism and we didn't know until later. My daughter as a baby never wanted to be held. She would just scream if you held her but if you put her down she was just fine. Right there is a behavior and I never knew it. I just thought I was a bad Mom. Then there was the flapping of her arms. She did this for a little while but stopped. The biggest thing we deal with is the repetitive behaviors, the obsessive behaviors and the weird/hysterical behaviors. I can't even really explain the last one...it's just so strange and it happens at odd times. All of these are autistic behaviors. But over the years I've had to find these things out for myself through research and dealing with specialists. Teachers and other people would have me believe that it was just bad habits for hard of hearing children or just from my daughter having global developmental delays. Autism is a real hard thing. Where one child may have one set of symptoms another child may share some of those or have a completely different set. Makes it difficult.

Wow. People are really obnoxious, aren't they?! :(

We went through the usual phases I suppose - the one asking why it had to be us, to accepting it and to now living with it but making the best of the situation. But I have to say prayers do help a great deal. My brother does things which seemed impossible even a few years ago (like making simple sentences) and so on. One thing I do believe in is that you should never give up hope. No matter what people say, no matter how old your autistic child is getting, no matter what happens. Its very difficult to be positive, I know.. but trust me.. you never know.. its like you teach something for years, and one beautiful morning, your daughter/son/brother/sister will suddenly put that idea you taught in practice as though they've known it all their lives. And that's a very beautiful thing to see. And you can't help but think its also because of your prayers.

My cousin has had really intensive therapy for the last several years, and apparently is really starting to show some changes as far as socially- hugging, wanting physical contact. Which is truly amazing. So yes.. you never know what can happen. You just have to stick with it. :)

I do believe in miracles and I do pray. :) I more or less accept the diagnosis, as in many ways there's no denying it. But a lot of the time I tend to "forget" about it, as he's still my child. And for all of his weird quirks and meltdowns (and issues with his speech), at home he seems like any other child. He and my daughter have what I feel is a pretty typical sibling relationship. :)

When we lived in the city, my daughter played "Challenger Little League" all the children had some kind of special need from very mild to severe. They were paired with "buddies" kids who played Little League and were chosen for this special honor, So they got to play baseball (every position) and had interaction with other kids. It also helped to create bonds between the special needs kids and and their non special needs peers at school and helps them to be more readily accepted and not made fun of. It's a very good program through Little League all across the country. My daughter is 14 and no longer interested in playing (she can't take her gameboy out to the field...lol) but I still go and watch the other kids play.

The school my son goes to has a peer program (which I tried to get my daughter into, but so far no such luck)- many of the classes have up to 2 typical functioning kids in the classroom with them. His school isn't just for children with Autism, though. It's more of a special needs school, in general. I am thinking he might do well in a regular school environment, but he would need an aide because he just cannot stay on task. He has serious issues with direction. LOL (Of course he's only 3). :)

That is unfair. There had to be better ways to utilize your son on the baseball team. :(

Wow. Do teachers think parents *want* their kids to have Autism?! Sheez!

Oh yeah, we get that too. Say what *does* an autistic child look like in their expert opinion anyway? I mean, sometimes, I'm really curious by that.

My daughter has a chromosome disorder and developmental delays including no speech, and she is almost 4, and grocery shopping - everytime we go someone tries to start a conversation with her and look at her expectantly several times before looking at me and saying "she's a quiet one isn't she?" Yes, she doesn't talk, I explain. "How old is she?" She's four. Then I get the look. She has a chromsome disorder, I explain, she's developmentally delayed. Ooh-ooh... Or if she is particularly cranky and tired of grocery shopping and starts fussing and screaming, and turning red, and getting herself into a coughing fit, she gets the look. Or I get, "oh, she doesn't feel good does she? Is she sick?" No, she is just not very patient and she's tired of shopping. But that isn't a special-needs thing is it, don't your average kids have meltdowns in the grocery store too sometimes? Come on people, what is wrong with you??? - I want to say, but I just move on. My daughter is usually okay as long as you keep the grocery cart moving. People always give the surprised look when they ask how old my daughter is and I say "almost four". Today at the playground someone actually responded with, oh she doesn't seem like it. And I politely said, no she does seem more like she's two. She has a chromosome disorder. Shut them up. I hate people sometimes.

Sigh.. some people just don't get it, do they? My son is only 3, but I know I'm already tired of the "he'll catch up" line. It's old. LOL

Yah - my son isn't going to catch up, at least not without a lot of support. Oh, I remembered another one I get a lot ... 'He'll turn out just fine' ... um, ok maybe thats true ... but come on, wouldn't we ALL want to create a life that is more than 'fine' for our kids if given the chance? I mean, my son is high functioning, and will proabbly be able to take care ofhimself and his day to day tasks as an adult, and probably even hold down a very basic job ... but with support, he can have a life rich in social relationships and a job where he feels successful and appreciated. Sure, he'd be 'fine' if I didn't get him extra support, but I can provide him with so much more.