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SetinStone
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10 Oct 2015, 11:33 am

I'm a little overly cautious, but looking back, hindsight is 20-20... are there any behaviors that your kids had when they were 1 that you now know was autism? We have a gifted almost-5 year old, and an Aspie daughter who is 3.5 (Well, her current diagnosis is ADHD, SPD -- and mild ASD r/o. Two of the therapists who have evaluated her feel she is "Aspergers." She has advanced & articulate language [no echolalia, she uses it appropriately in conversation] and no motor delays. She has taken the ASQ-SE, Sensory Profiles, SRS, MCHAT, CARS, all of which indicate she is mildly autistic. We are now waiting to see a pediatric neuro next month for the ADOS. They want to be very certain in giving her an official dx.) and I didn't really realize fully how "different" our Aspie was until she was between 2 and 3. She did some things though, like had tantrums before age 1 and got so frustrated she shut down, laid on the floor, screaming & crying even though she knew the word to use or the motion. (She still does this with her amazing, advanced language, she just has issues communicating.) I wonder about the baby. He has some strange behaviors. He WILL NOT sleep in his crib. He suddenly became terrified of it and refuses to sleep in it and cries a pain cry & screams in terror if we put him in it, he starts heaving & hyperventilating, and so we have to let him sleep on the floor -- the only place he'll sleep through the night. He has started banging his head on things repetitively. Occasionally. He is only 13 months, but he has been walking since 10 mos & he seems really clumsy. I don't remember either of my daughters being so clumsy. He falls sometimes over and over and we laugh because he looks like he's drunk. He bites our toes sometimes, and just won't stop, it's like he's obsessed?? He gets violent when he's tired or overstimulated, like he starts hitting people, head butting us, biting noses, etc. He's practically always done this. HE WILL NOT STOP! He rubs his feet together up & down when he's upset, OCD-like, he's done it since he was born. He's done it to the point he rubbed them raw & they bled. Our Aspie DD does this when she's having a meltdown, although she's never bled. He says words, like dada, mama, uh-oh, hi, baba, etc. Signs "milk" and "more" and does it to let us know when he does want milk or to be fed more. Points to objects he is interested in, and also points to identify things we have asked him about (mostly family members). His motor skills are on par except that he's clumsy. Has awesome receptive language (understands us & commands). He plays with cars and doesn't play with one part of them like the wheels, he uses them properly, runs them back & forth on a surface and makes sounds like "vroom vroom" or "whosssshhhh." Is very happy & calm most of the time. Giggles. Does things to make us laugh and makes sure we are watching so that we'll laugh. Dances. Loves movement. Puts his arms up to indicate he wants to be picked up. When did you start to realize your child was autistic? See any familiar behaviors?



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10 Oct 2015, 3:11 pm

In hindsight, yes. When she was born the nurses were *amazed* at how alert and aware and curious she appeared from the moment she was dry and calm. By the time she was one, she was interacting with the world primarily via her left index finger & was fascinated with wheels (which she termed, "dinda"). First noun-verb sentence at 14 months. We thought, "Oh! She's so smart!" but had no idea of the potential difficulties ahead. By five she was drawing highly accurate maps of the city we lived in from memory of driving or walking them, extending to about eight miles away.


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10 Oct 2015, 3:49 pm

My son loved to play with trains as a baby/ toddler. Although, to me, it seemed like he was playing with them in a typical fashion, looking back, he was not. He used to lie down on the floor for hours and push the train on a track back and forth, back and forth. His head would be down, and he would be lying on his side and looking at the motion of the wheels. I thought he was just really focused, but when I told the doc who diagnosed him, she said he was stimming. He did just to turn ride on cars upside down so that he could spin the wheels, but I thought nothing of it because I did that too as a kid. But, I knew pretty early on that something was different, I just did not know it was autism. He would not sleep unless he was either being held or moving. He had clear sensory issues with noise and would shriek in terror at the sound of a vacuum, a blender, construction noise, etc. He would bang his head on the ground (even pavement), bite or hit himself when he was upset. He could never be alone in a room. He ONLY wanted anything to do with me, he did not even like my husband holding him. He did not like it when anybody was standing near him. He could not handle groups of people.



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10 Oct 2015, 4:47 pm

Fitzi wrote:
My son loved to play with trains as a baby/ toddler. Although, to me, it seemed like he was playing with them in a typical fashion, looking back, he was not. He used to lie down on the floor for hours and push the train on a track back and forth, back and forth. His head would be down, and he would be lying on his side and looking at the motion of the wheels. I thought he was just really focused, but when I told the doc who diagnosed him, she said he was stimming. He did just to turn ride on cars upside down so that he could spin the wheels, but I thought nothing of it because I did that too as a kid. But, I knew pretty early on that something was different, I just did not know it was autism. He would not sleep unless he was either being held or moving. He had clear sensory issues with noise and would shriek in terror at the sound of a vacuum, a blender, construction noise, etc. He would bang his head on the ground (even pavement), bite or hit himself when he was upset. He could never be alone in a room. He ONLY wanted anything to do with me, he did not even like my husband holding him. He did not like it when anybody was standing near him. He could not handle groups of people.


Oh, gosh yes. The Thomas trains. I'd forgotten. Ours would connect as many cars as possible and move the entire chain back and forth, seemingly endlessly, just to watch all those wheels. There was no imaginary play or imbuing them with personalities nor animate. And yes, the aversion to noise and crowds. Finally...as first time parents we didn't know just how unusual it was that motion was a sleep requirement. Car, swing, glider, walking...I'm amazed my spouse and I didn't develop motion sickness. And that clinginess? For us it's anyone trusted but it has never diminished.

The final clue for us was the inability to understand that if someone walks past and brushes you or makes other slight contact, they are not attacking to kill you...


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InThisTogether
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10 Oct 2015, 6:25 pm

My kids were clearly not "normal" at any point in their development, though I did not know what to make of it. My son could only fall asleep if in motion (he fell asleep with me wearing him in his sling or in a swing for probably the first year of his life. He crawled strange (one knee and one foot), his speech was delayed at 18 months, but advanced by 2.5. He had sensory issues, and had pretty serious motor issues. When he was a toddler/preschooler, watching him run was quite a scene. He looked like his arms and his legs were on two different bodies doing two different things. Both kids were "high needs" as infants. My daughter nursed every 2 hours at night for the first year of her life. She never did develop a good latch, so feeding her was painful. SHe would not take a bottle or a pacifier. Would not even suck her thumb. Like...refused to do it. For a while I thought she was HOH because her response to me was so sporadic. Then for awhile I thought she was maybe MR because she did not follow simple commands like her brother did. She was on the cusp of being late for nearly every developmental milestone. She had a spacy gaze. She headbanged. She did not play with toys normally. Her favorite thing to do was tear things (paper and play doh) into tiny pieces and arrange them into lines and piles.

In hindsight, my daughter's presentation as an infant/toddler was much more "typical" of autism than my son's. Even so, I tended to focus on the things that she could do, to the point that I tended to downplay or ignore the things she couldn't do. It wasn't until she was hospitalized for an illness and her doctor saw her more that he recommended she be evaluated. I think it was especially hard for me to figure out because her brother is 4 years older and he wasn't diagnosed until after she was. I never had a "typical" baby to compare to. My friends had babies, and I knew they were different than their babies, but I really didn't know what to make of it.


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momsparky
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14 Oct 2015, 10:40 am

We had an exceptionally colicky baby and a child who "flew under the radar" until 4th grade, but was pretty classic AS once diagnosed appropriately. I have to LOL at InThisTogether's post because I'd forgotten we had a lot of the same issues when DS was a baby - they got waved off because of he was hyperverbal (same issues sleeping, with latch, would only suck OUR fingers and not pacifiers, etc.)

Since you've got a family history of neurodevelopmental "stuff," for lack of a better word, I would trust your instincts and take your child to a professional for screening. They are able to find neurodevelopmental problems earlier and earlier - although they can still miss things, so if you are told your child is "fine" (oh, how many of us hate that word!) and you feel in your gut that they missed something, wait for the next developmental jump and have your child screened again. (We never missed a screening and still got diagnosed late, but that was 15 years ago. That said, we never went to a neurodevelopmental specialist until 4th grade, either.)

The major issue to address in early intervention is communication, so you have time for screenings to catch up to your concerns. With babies, it's kind of a weird combination of "trust your gut" and "wait and see" but you know your baby better than anyone else, and don't let doctors tell you different.



SetinStone
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16 Oct 2015, 9:02 am

Okay, well for one, he definitely uses his toys in the way they are supposed to be used, he actually plays with the cars and makes the sounds and doesn't lie down looking at the wheels; he also knows how a toy vacuum should be used and plays with it appropriately; as well as pretends to brush his hair, and knows how to use a spoon in a bowl. His motor skills seem to be on par, even early; he points, claps, waves; makes great eye contact with strangers even; he usually has a social smile and he has started to let friends hold him..... My daughter did pretty much all that stuff too and was verbally advanced *except* she was a toy dumper -- didn't play with them like 80% of the time, just dumped them, and I mention this because a member of a behavior group class we take with an ABA therapist said her autistic son does this! -- and she was not social and hated people trying to hold her or touch her, she was only OK with us & close family members... we thought it was extended separation anxiety & fear of strangers. But sometimes she would even arch her back & want to get down when it seemed like she wanted me to pick her up, and then cry for her dad. Our son doesn't do anything like that. Someone in another HFA group of mine mentioned claustrophobia about the crib!! Our first daughter (NT) is claustrophobic!! ! She freaks out if she feels trapped. Is it possible he shows signs of it even earlier? I can't think of anything negative that's ever happened in his crib that would make him not want to be in it otherwise.

Now as for some of the stuff you guys mentioned... wow! I remember some of this stuff with my AS DD! She was exceptionally colicky as well! I ended up buying a parenting book for high needs/demanding babies when she was an infant. Had to be swaddled very tightly. (She still loves pressure & proprioceptive input and being wrapped up "like a burrito") Would only sleep in the swing or being baby-worn for MONTHS. Sometimes we would walk her around to sleep after she grew out of the swing. When she was older, at times, I'd take her for a car ride. Tearing paper into pieces!--She used to rip books up into shreds!! I could not get her to stop until maybe 3. I explained to her books were for reading, she did not care. She was terrified of the vacuum, covered her ears and cried at the blender, the auto-flushing toilets, the hand blow dryers. My son doesn't do any of those things at all. He actually loves the vacuum. So I guess I will just keep a close eye on him for the next few months and see if anything else concerns me.

I don't know if this is true for you guys, but I read last night in a Time article that often autistic children & prodigies with autistic qualities were associated with difficult pregnancies?? One thing that was mentioned as an example was early labor that had to be stopped several times. My Aspie DD was my only pregnancy that I had vomiting. I vomited throughout the entire pregnancy... till 9 months. I couldn't figure out what would trigger it and I could not stop. And I had the worst food aversions. I ended up only gaining 18 lbs. And I say only because with my other two I gained upwards of 40 lbs 8O . Just wondering if there's any truth to this with you guys??? My son's pregnancy was easy peasy.



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16 Oct 2015, 11:18 am

I've only had one pregnancy, so don't have a comparison, but it all looked pretty normal generally except that my son was very large (which from what I see of my autism-mom peers is actually unusual.)

IMO, you're right, you're describing a lot of behaviors that hit the benchmarks. I guess what I meant earlier is that screenings do no harm...why not do one? Don't get me wrong - I think it's great to post here about concerns and with questions, but I also think that if you have a gut feeling, you have enough coincidental factors (other neurological issues in the family, etc.) to have it looked at.

We aren't going to be able to do what an IRL screening by a trained professional can do. I also think that it helps to de-stigmatize autism if people start going for screenings as a matter of course, like they do for other issues that crop up in childhood.



SetinStone
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16 Oct 2015, 12:37 pm

I definitely don't attach any stigma to it. As a matter of fact, when people try to tell me my DD isn't AS/ASD, I'm like *eyeroll*, I know she is. It's not a big deal, (I mean yeah, it's hard) but the label itself is just a diagnosis, and it's just part of who she is. She's always been who she is. Why is it so terrifying? She's awesome to me in so many ways. I see autistic characteristics when people write comments on certain threads now, or even some parents talking to me, and I laugh that they stigmatize it so much they can't just go and get their kid screened. If you mention the word autism, they're like NO! not my kid! Funny, I told my aunt the other day, I think her daughter may be AS (she was dx as severe ADHD and now has been dx as Borderline but they are scrambling for a dx, they've suggest Bipolar as well, bc she doesn't quite "fit" some things) and I see many characteristics and she listed to me every reason she couldn't be. She said she's great socially and loves people -- she may love people but she has little to no friends, was bullied, and her social skills are not good at all, she can't take social cues either. I grew up with her, I know her. It's only hurting her for her mother to spin her wheels in the mud and not to consider possibilities. But for me, she was like "Oh she's fine, nothing's 'wrong' with her! I know lots of wonderful kids with autism" blah blah when it was MY kid that I said had most likely AS/HFA/ASD.
However, I have yet to have any gut feeling on my son. I sort of had this gut feeling something was different about my AS DD honestly, from her being a small baby, and as time went on, the feeling only got stronger. I KNEW by between 2 and 3 that someone needed to check her out, but I didn't know for what exactly. My understanding at the time of ASD & AS was too narrow to catch on to that. I did look it up a couple times but her symptoms did not match up. Only now that I have done deep research do I know she did have plenty of characteristics. I don't see the things in my son that I did in her but I did wonder about those things like biting, rubbing his feet together and being scared of his crib so I just wanted to ask. I just overly worry because I do have a family history of ADHD, anxiety, SPD, gifted IQs, OCD, depression, learning disabilities, and I just feel like all of that relates to a broad spectrum of autistic/AS characteristics, and combined with the fact we have 1 child on the spectrum, it makes me highly on the lookout. I have no problem getting him screened, but I think I can "wait and see" for now, at least till his 15 month appt, there's nothing alarming that I need to rush to the ped about currently. I'll be keeping an eye on his development for the next 2 months. The ped I think already thinks I'm nuts :? Even though I've been right about everything I have suspected. But if I hadn't have been so on top of things, my DD's autism could have been missed. I pushed through a school screening right after she turned 3 where they told me there was nothing at all to be concerned about, and said I wanted another opinion. They tried to let her slip through the cracks because she was verbally advanced and her cognitive & motor skills were fine. I could tell upon filling out the ASQ-SE something was up. Thank goodness I did.



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16 Oct 2015, 1:18 pm

My son was incredibly alert at the hospital and everyone commented how he would look around...they all claimed it was odd, I didn't know. I became a bit worried that he never crawled much and it was taking him a bit longer to walk, I was told he was a boy and let it go. I remember laying on the couch with him and him smiling at the wall or at space...People told me that maybe he had gas...hmmm lol I remember he had many toys but didn't play with any of them. I love art so he had crayons, art stuff, educational toys, etc. from very early on and he couldn't care less. The only toy he used was a little car that his dad got him that made some noise and a stuffed animal he carried with him everywhere. The first toy he actually played with was Thomas the Tank at Barnes and Noble...finally we were excited he liked it and we bought him trains. Over the next few years all he did was play with trains, he had tons of them. He eventually liked cars, but didn't make noises or anything, just liked them and lined them up. He never played with other kids, just on his own most of the time, although with adults he was sweet and didn't really mind hugs, etc. He was also very stubborn lol when we would tell him to get away from the fireplace...we'd just laugh. He spoke some pretty long words which made us amazed and at some point we realized he was no longer saying anything at all. The doctors claimed it was because of his ear infections, but nothing changed after he had tubes in his ears. PS he spit up his milk within days of arriving at home from the hospital...it was formula and the pediatrician told us to switch to soy...we did...there was somewhat a difference, but he would still spit up a little bit...she ignored it and told us to go back to regular formula...at age 3, after numerous ear infections and getting tubes in his ears, an allergy test was done and it was determined he was indeed allergic to milk...but of course, he had milk and milk for years even though we KNEW something was off from day one ugh