I have a question regarding autism.

[lynn]

If you don't mind me asking.  What were your first observations during toddler years and what would you have done differently.  Any resources or other info?  If I can pm you with a few questions please let me know.  Thanks.

[Jean in Newcastle]

I noticed from infancy - extreme sensitivity to sounds, textures and other sensory input especially.  Toddler years - hard to transition - even more than his peers.  I wouldn't do anything differently.  I did a lot of coaching on transitions, getting used to different situations for social and sensory reasons, lots of allowing him to go ahead on those things he was good at and gentle encouragement to grow on those things that he wanted to avoid.  I honestly have no idea what would have happened if he had a twin that I treated differently (since that's the only way you could tell, ,right?) but when we were in the Autism Support Group at the start of college my son was at the tippy top in social and emotional development in that group.  Could that have just been the luck of the draw?  Certainly.  But I sure spent a lot of time in the 18 years prior to that working on those very things. 

[TrixieB]

Lining up things, for example all the Playmobil people would get lined up by hair color in rows, instead of being typically played with.  Lack of typical interaction with other kids. Sensory issues - textures, sounds, smells. Small motor and gross motor difficulties. Had to be explicitly taught social responses.  Very literal.  

Years of pediatrician visits with the same doctor, who was very surprised by the diagnosis in mid-teens.  I do wonder if it would have been caught sooner if we had not homeschooled -- maybe a teacher would have noticed?

[Lawyer&Mom]

In retrospect I knew when they handed her to me in the hospital.  (I immediately knew she was just like me, but I didn’t know I was Autistic at the time...)  She was a colicky baby, just like I had been.  Couldn’t sit in a bouncy chair for more than five minutes.  Always needed to be held, needed stimulation.  Difficulty going back to sleep after night feedings.  (My not-Autistic daughter was a much easier baby.)  As a younger toddler my Autistic daughter was highly verbal, speaking well before her peers and always very engaged with her teachers.  It was only as an preschooler that it became clearer that she really had deficits engaging with her peers.  Her boisterous personality obscured some of her social obliviousness.  This was the same time I was realizing my own Autism.  (Going non-verbal when your two kids climb on you is a red flag.)  I immediately had her assessed at age 3.5, much to my husbands skepticism.  She did not receive a diagnosis at that time.  I eventually got myself diagnosed, and had her reassessed at age 5, when she was diagnosed with ASD.  So what would I do differently?  Not much. Trust your gut.  Take notes.  Read the diagnostic criteria as that may help you make connections about the behaviors you observe.  The doctor who diagnosed her said the first assessment was very well done, it’s just that her issues were too subtle to be caught on the preschool ADOS, but were clear on the elementary school ADOS.  

Also read the Social Thinking profiles.  Such a useful framework regardless of diagnoses or labels.  It describes older kids, but read it now just to have it in mind for the future.  https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile

[Pawz4me]

Major sensory issues, difficulty with fine/small motor skills and hyperlexia were the first things we noticed. What I would have done differently--nothing, really. I could say I would have preferred to have an official diagnosis much sooner (DS was almost an adult before he got the official diagnosis) but I knew he was on the spectrum and I don't think it would have made any significant difference to have had an official diagnosis earlier.

[JenneinCA]

Extreme sensitivity to sounds, smells, textures, lighting, food....  everything.

Extremely sensitive to routine...  everything had to be done the same way every time.

Extreme interest in something to the point of not being able to think, talk or do anything else...  in our case reading a certain series of books, earlier it was Thomas Trains, before that the tv show Arthur

Done differently?  Nothing.  
The way autism was diagnosed changed when this child was a teenager.  The label and resources simply did not exist when we needed them.  I did ask questions and was told I was wrong. 

[Terabith]

My first red flag was at her second birthday party when she said, "Mommy, I don't like other children.  I prefer to play alone."  

[kbutton]

A lot of alternative reasoning was a big sign. Asynchronous development made it harder to see just how vastly different his thinking could be. For example, he has a very high IQ, so when I would talk about what he was doing differently, it was already met with "That's not possible" when he really was doing those things at those ages, and he was also thinking something really out of the box in an atypical way while doing it. 

He didn't understand hierarchical relationships--he's as democratic as you can get. This led to him fighting every parental authority we had if it conflicted with his unique reasoning. He also felt disrespected if we didn't treat him like he was a fully formed adult. When I say this, I mean, when he started using a spoon to feed himself, the spoon had to look like ours, or he was disgusted and seriously peeved. So plastic spoons were not acceptable, but real silverware sized for a child was (if it looked like ours). There were exceptions when they made sense to him--Elmo silverware was okay because Elmo was cool. If you think this sounds like a reach, I agree, except that this pattern of thinking repeated itself over and over until he got a baby brother when he was 3.5. Then he suddenly understood that we were taking care of him just like we were taking care of the baby. 

He was unwilling to comply with things he didn't understand. When he was about 6 months old, he started arching his back and flinging himself out of his carseat while I buckled him in if I didn't tell him where we were going. I didn't think he knew the difference, but he did, and he wanted to know. If I told him, he'd sit down quite calmly and let me buckle him.

He was rigid about what thinking he applied to a given situation in specific ways. So, he might generalize something that should be a one-time thing to everything and then be mad. Or he would take something that should apply generally but try to make it specific, and it wouldn't work. I never knew when he would do this or not, and sometimes it was extremely important to get it right because it would feed into major problems downstream or be related to safety. 

Communicating dangerous stuff to him was hard--it was either dangerous all the time in his mind or not, and it was hard to find a word that conveyed danger to him. "Hot" finally worked, but it was confusing because things were not always hot, and then he'd behave like we were lying to him. Other times, he got all the nuances, and it made him do crazy stuff. For instance, he understood that things with switches turned on and off, and that things with cords needed to be plugged in to turn on and off. Safety plugs had no cord, so he decided they shouldn't be plugged in--then he proceeded to pry them out with a butterknife to be helpful. He was between 18 months and 2 when he did this. Another time when he was about a year old, he grasped that the oven was hot, so when I was taking something out of the oven, he was scared on my behalf and wanted to save me--as a result, he closed the over door and almost closed in on my arms. I had to scramble to get out of the way. Also at this age, he could explain in precise detail how to light our woodstove, but he didn't know all the words, so he'd pantomime or make sound effects for what he didn't know. He knew we needed to "boom" (chop) kindling and that we needed to "boom" the wood too. He knew where the matches were, he knew we crumpled paper, opened the flue, etc. It was both astonishing and terrifying. 

He tried to potty train himself at 15 months old, but his legs were too short to get on the potty. He refused ALL help to get on the potty, including refusing a stool because mommy and daddy didn't do that when they used the bathroom. After days of him getting really angry, we got him a baby potty. He was so insulted that he refused to even try it (he had a specific noise he made that conveyed absolutely disgust, in addition to seeing his face). That very day he went from taking off his diaper if he had even a teaspoonful of wetness in it (cloth diapers--he could feel it) to refusing to let us change it until it was utterly soaked and falling off. He was mad, and it was most definitely a protest. 

Language development was behind the rest of his development, BUT his language development in almost all areas exceeded what was typical for age (vocabulary, etc.). It was also quirky--he would make up words for things or reverse engineer things in ways that made sense on some level but weren't how we say them in real life. For instance, because you would plug in a cord, he would say he was going to plug it out rather saying unplug it. So, he'd latch onto in and out being opposites, but miss the morphology of the suffix. 

He has some scripted language, but it was always appropriate, so we didn't notice that much. For instance, I had asthma, and he knew it. The local PBS station had a little PSA about checking air quality for people with asthma, and he would very courteously recite the entire script for me to see if I could outside that day. 

He didn't play with things the normal way, or even really play with them at all until he was coordinated enough to use realistic toys (like a pretend vacuum cleaner). When he was just toddling around, he decided that he wanted to balance an empty water bottle on its lid. It wasn't one of the more rigid ones, it was one of the smooshier, less precise water bottles. For something like three days, this was his one and only goal all day, and he would rage at not being able to do it, but he would rage worse if I took it away. He finally conquered it, and then he quite contentedly toddled off as if nothing had ever happened. I took a picture of it upside down for posterity.

He had amazing vocal stims--they were elaborate and hard to repeat. He could mimic almost any sound he heard very precisely and realistically. When he was a baby, he would play "Simon" with his stims. He'd make a noise, and I would echo it back. Then he'd make a longer noise, and I would echo it back. This went on until there were too many parts for me to remember, and I would flub it up. Then the game was over. He always won. 

 

[kbutton]

59 minutes ago, Jean in Newcastle said:

 I did a lot of coaching on transitions, getting used to different situations for social and sensory reasons, lots of allowing him to go ahead on those things he was good at and gentle encouragement to grow on those things that he wanted to avoid.  

I forgot the what I would do differently, but I mostly did what Jean describes and would do it again. I would like to have access to a VERY skilled ABA person though--it would've helped certain kinds of things. Instead, I did do ABA-ish things from trial and error, but without confidence or understanding why it worked. And it wasn't well applied because it was just a desperate attempt to survive the rages and meltdowns.

I didn't avoid taking him places, but that was socially costly to me. He could be an angel and just so, so engaged/pleased with what was going on one time and completely ragey and disregulated another time, and it was ALWAYS my fault. I would like to say that I would change social circles earlier (church!!!), but a more accepting group might have also been more judgy about having to be mind-numbingly consistent (except when he didn't want consistency, lol), and that wouldn't have been good either.

I did find that counting backwards for transitions was super effective. He always knew that when we got to "one," that was the magic cue. Then I could count from five or ten or even twenty to give him the amount of time I felt he needed, and when he got it "right" when we got to 1, he felt successful.

Had I know about it, I would've gotten him into a good sensory OT earlier. That was life-changing. 

[kbutton]

20 minutes ago, Lawyer&Mom said:

In retrospect I knew when they handed her to me in the hospital.  (I immediately knew she was just like me, but I didn’t know I was Autistic at the time...)  She was a colicky baby, just like I had been.  Couldn’t sit in a bouncy chair for more than five minutes.  Always needed to be held, needed stimulation.

Yes! He was always unsettled and generally unhappy as a baby. 

[Katy]

With both of my nephews I think I knew before their parents.  Neither liked to be held as a baby, and even as newborns they avoided eye contact. With the first (I was a teenager) he didn't get diagnosed until 8 or 9, but we all knew he was different before he was a week old.   With the second I remember having a discussion with DH about it on the way home from the first visit, and deciding we would say nothing and see how it played out.  He got diagnosed with severe autism before the age of 3, which caused a bit of controversy with some of the people in the family who didn't want a diagnosis. He has several cousins on the other side of his family who had already been diagnosed, so I don't think it was a surprise to almost anyone.

With different children who've stayed with us (we're foster parents), they typically don't have a diagnosis, and don't want to try to get a diagnosis until they've been in a stable home for 6 months because it's difficult to suss out the differences between developmental delays due to trauma and those of a neurological basis.

I've wondered about DD2, and even taken one of those online quizzes regarding her symptoms, but decided not to do anything because we aren't going to put her in therapies during Covid. She also has some heart issues that mean she's at high risk so it's not a question.  On the other hand I think since I was first worried about it her risks have gone way down.  She's had a verbal explosion, is now pointing and following pointing, seems to have some compassion she didn't display before, and has started a great deal more imaginative play. She is very sensitive to children's tv programming and if I let her watch too much of it (like Badanamu or Cocomelon on YouTube) her symptoms return immediately.

You can try this screening quiz at Autism Speaks and see if it helps ease your concerns.  https://www.autismspeaks.org/screen-your-child

[Innisfree]

Fixation on one particular color, to the point of having massive meltdowns in stores if I refused to buy random things in that color. Similar fixations on various animal toys: watch out if there's a particular sort of stuffed animal in the shop, for instance. 

Things like these treasured objects were hoarded, and letting other family members use them was a huge, insurmountable issue. Some game pieces were so closely guarded we couldn't play the game.

Shoes that had cute animal images on them were so treasured that dd refused, absolutely, to ever wear them outside. Tough when we'd spent the budgeted amount for shoes, and she would.not.wear.them.

Rage. Emotional dysregulation. Extreme overreactions to things which seemed insignificant to us. Complete inability to just sit in time out, even for the briefest moment; instead huge, angry, physical tantrums, complete with aggression. All this continued *long* past the normal tantrum years.

Extreme frustration with other people's schedules, and times when we needed to hurry: for example, if big sister had a dance lesson. It wasn't exactly transitions in general for us. Slow transitions might be all right, or transitions which were flexible in time, or shifting from one activity to another at home. But anything which involved time pressure, "we need to leave by 4:30 because her lesson is at 5:00" : that sort of situation brought out meltdowns, fury and complete lack of compliance: in fact, an angry determination not to comply.

She thought figurative language was hilarious. She did understand it, at least after it was explained once, but just thought it was a hoot. In fact distracting her from a grievance with a figurative expression was one of the best ways to get past a contentious moment.

There was some difficulty with before/after, yesterday/tomorrow, left/right. I'm not sure if that was the autism or some other glitch. Less-frequently used verb tenses came really, really slowly.

Play was always focused on animals. Always. She spent hours constructing cart arrangements for toy farm animals. Trains were turned into carts for farm animals. Legos were only used as carts for toy animals. She made things into leashes, and leashed everything possible. She leashed toys. She leashed her sister. We finally had to hide the leashes, because her sister was out of patience with being a dog. She loved stuffed animals, but only the kinda-sorta realistic ones. 

If I could go back, I would get an autism evaluation early, and get ABA therapy. That ended up changing our lives. By the time we got it, she was ten. She would have been so much happier during those early years if that had all happened earlier, but the therapists we went to early on didn't recognize the autism. One told us we weren't firm and consistent enough disciplinarians [hard scowl].

These days, she's so mature, and kind, and thoughtful. She's still herself. But, if things are hard now, know that they can get so much better.

 

Edited September 8, 2020 by Innisfree
Spelling

[Lawyer&Mom]

11 minutes ago, Innisfree said:

Fixation on one particular color, to the point of having massive meltdowns in stores if I refused to buy random things in that color.

I forgot about this. Special interests can start really early.  The theme of her second birthday was purple.  Purple balloons, purple napkins, purple plates, she wore head to toe purple...  I think the Purple focus started at 18 months.  Now she is fixated on princesses.  Fortunately it isn’t hard to find Princess things for a seven year old girl.  

[MeaganS]

I knew something was up with DD12 from when she was an infant. She was a very difficult baby in ways that just seemed unusual. She had me trained on her preferences and I was the only one who could keep her from screaming because I just got to know what she hated and what she didn't (nothing from season 2 of Blues Clues, only season 1, because the opening credits changed, for example). She also didn't eat enough and was failure to thrive. And she was delayed across the board. When speech started, her echolalia was a major red flag and when we had her diagnosed at 3, it wasn't a surprise at all. We now have her other diagnoses of Turners Syndrome which explains a lot as well, but the autism is her major day-to-day struggle, Turners is more of her health struggles, although it may be that her autism stems from Turners. They don't really know enough to say.

I'm not sure what I would have done differently. We push her a lot more than other autistic parents I see. That is both good and bad. She has pretty awful self-esteem and we are trying to work on that. On the other hand she has made amazing strides and is such a great kid. She just thinks she can't do anything right because it is so hard for her. 

[bolt.]

My good friend's daughter was diagnosed, so my minor observations come from the time I spent with them.

The first observation I made was that she was challenged by solid/pureed foods from the very start of solids. She would refuse foods in a way that seemed like "picky eating" but did not respond to normal eating strategies. (As a seasoned mom, I suggested feeding strategies to my friend but my friend correctly inferred the opposite -- that favoured foods had to be provided 'just so' or eating would *not* happen.)

My second observation was language development, as the child would not speak to me or around me whatsoever. Eventually, I sensitively asked if it was me: was she shy? Did she talk more when I wasn't around? No, she was a 'late talker' then 'a very late talker' then 'the doctor is concerned' and eventually ASD.

[ktgrok]

Sensitivity to sensory input, from birth. 

A need to "think" on things from a few months old. I remember he was only 3 months old and was awake ALL day - it had been seven hours straight with no nap, no nothing, just crying and eating and such, and what finally calmed him was holding up a patterned block - one of those old red/white/black fabric blocks - and he'd look and stare and calm down...and then he'd fuss and I would turn it so a different pattern was facing him, and he's calm for several minutes, then fuss and I'd turn it. Basically, he was an infant but he was bored and needed the stimulation. It was strange. 

He was very colicky and fussy to the point that I started tuning out his crying and not noticing. I'd be holding him and bouncing him and people would ask what was wrong with him - why was he crying? And I was like..um...oh..yeah..that's just what he does. 

When he was young he'd hide any injury. Instead of running to me if he fell and hurt his knee he'd run away and hide by himself. 

He never ever ever played pretend. He didn't play WITH kids, he played next to them. And if he got frustrated he was quick to lash out and hit. We did playgrounds for about 10 minutes at a time, and I'd hover to grab him before he hit anyone, then leave. He was terrible with transistions and screamed EVERY time we left anywhere, but also freaked out for good surprises as well as bad ones. Once my husband called on his way home from work, and told me he was stopping to pick up my son's favorite meal on his way to surprise him. I didn't tell DS, I just said DH was coming straight home. When DH and pizza arrived DS screamed and cried and called DH and I liars. He was more angry that we had lied (in order to surprise him) than he was happy to have the pizza. 

The lightbulb moment for me was when I realized he didn't know how to knock on a door ....at age 10. He woudl bang awkwardly...too hard, or too soft, or just...wrong. I thought he was being obnoxious, and then realized no - he didn't know how. I had to show him. Every other kid just figures it out from watching others do it - but not him. Those mirror neurons didn't work. 

Oh, and he didn't have a true sense of cause and effect until he was about 13 yrs old. 

Do differently? I'd have gotten a diagnosis MUCH earlier, and been a heck of a lot more sympathetic instead of assuming he was just being obnoxious. The guilt I have for the times I got frustrated and said, "don't you know how to act grateful????" only to realize years later that no, he really didn't know how...those haunt me. 

[Rosie_0801]

I kept a low stress environment and that was absolutely the right thing to do. It allowed him to operate at his personal best and be pretty cheerful about it.

With the other one, who is "high functioning" as in her responsible adults haven't picked it, I talk through everything and explain how everyone and everything works.

Oh, and he didn't have a true sense of cause and effect until he was about 13 yrs old.

The cause and effect thing, my goodness. Thanks to trauma, dd still doesn't have it at 13. I have an autistic buddy who is 23 and, thanks to trauma, still doesn't have it.

[kbutton]

1 hour ago, Rosie_0801 said:

I kept a low stress environment and that was absolutely the right thing to do. It allowed him to operate at his personal best and be pretty cheerful about it.

The cause and effect thing, my goodness. Thanks to trauma, dd still doesn't have it at 13. I have an autistic buddy who is 23 and, thanks to trauma, still doesn't have it.

Yes, low stress environments are so helpful! Unfortunately, they seem to create stress for everyone else either out of genuine tiptoeing or from lack of empathy from NT people. It takes some planning and re-setting expectations. 

I keep thinking of more stuff...

Surprises were never really particularly fun. There were several years that Christmas was so stressful if certain items were highly desired, but my son didn't know for sure he'd be getting them or not. That seemed to be more of a problem at certain ages. 

My son seemed to study cause and effect diligently, and I think it's because it clicked some times and not others. 

My son would also push buttons sometimes so that everything would blow up, and then he would have his sensory needs met from the family-sized meltdown.

Speaking in velociraptor was a big tip off as was reading picture books aloud with a Russian accent after seeing a movie with accents or mimicking his babysitter's Australian accent, lol! Behaving like a cat too.

1 hour ago, happysmileylady said:

I will also say that, like another poster, I push DD, and DS more than I see some other parents.  I try to anticipate situations that are going to be difficult and I push them to work through them, while still providing the necessary support.  I try hard not to avoid situations that will cause a struggle, but to support them through the struggle.  For us, in most cases, this is food related, but is still related to other things often enough.  

We do too, partly because the majority of people don't see the autism easily, and my son comes across in many places as very competent (and in some realms is more competent than adults and for sure peers). If we don't prepare him to face difficulties and know how to work through tricky stuff, he's going to be non-functional in a world that doesn't know or care he's autistic. I don't know if he'll file for workplace accommodations or not in the future. It's not something he really will talk about yet. 

Regarding sensory issues--kids can seek or avoid. My son was an avoider for loud noises, but a seeker for making noises of all kinds and using toys to make noise. Loud noises could make him physically ill. He has been known to nearly faint if he encounters a particularly loud and weird noise unexpectedly, but I don't think that would happen now. He was a seeker for taste--he has an amazingly tolerant palate and loves a diverse range of food. When he was little, he'd try anything at least a few times, including sucking on lemons and things like that to decide if he really liked it or not. He didn't eat non food that I know of, though he might've tried to eat a bug a time or two when he was really little. 

[PeterPan]

4 hours ago, Lawyer&Mom said:

I knew when they handed her to me in the hospital.

Yup, pretty much. Ds was EXTREMELY opinionated from day 1. He had this social justice thing and would get violently angry (as an infant) if you didn't respond when he wanted, come as he wanted. It was very clear he was not typical.

He did some of the stuff you expect (being hard to get attention for photographs, I thought it was me, staring at the ceiling fan, etc.). He didn't coo or babble, but that was his moderate/severe apraxia. 

We ended up doing 9 ½ years of speech therapy (2 hours a week, 4+ hours of driving) for the apraxia. That gave him so much time with adults and so much intentional, ABA-informed interaction that he didn't really flag in our minds on some of the most glaring things you'll read on lists when you google. Like if you google, it will ask about pointing. Well yeah, he pointed, but he was getting a LOT of 1:1 developing these skills, kwim? 

The sad thing is, I think if we had had EI (early intervention) in when we first suspected ds' apraxia at 1 ½, ds would have been referred and gotten diagnosed. It messed us up a lot missing that diagnosis, and made life a LOT harder than it needed to be later. My ds is now diagnosed ASD2 btw. I look at the pictures from that time and I see it. I was just being told by some people it wasn't and told by other people not to have someone in my home, not to pursue evals.

If I could change anything about that time, I would have gotten the evals sooner. The studies show that *80%* of the time when parents suspect it is ASD, it is. If you're even asking the question, it means it most likely is. I mean, I'm sorry if that is sad or whatever. I'm just saying it's the truth. So don't live with regrets. Go through the grieving process, do the hard thing, get the evals. If you *suspect* it's an issue, get the evals. Get them right, get them with someone who is homeschool friendly (not homeschool averse, not blaming parents). 

Also consider, if diagnosed, a genetic study like SPARK. There is so much out there now. Sometimes the ASD will be a de novo mutation, and sometimes it's part of a pattern or a family tree. So genetics may turn up something worth knowing, and participating in SPARK builds that library the researchers can work from to get us more answers. 

[sbgrace]

Well, I had twins. So maybe things stuck out quickly because they were the same age.

My son with autism didn't consistently turn to look/respond when I called out his name. He didn't naturally use nonverbal communication (pointing, waving, etc.) like his brother. I noticed those things before his first birthday--I remember being concerned by 6 months, but everyone, including his pediatrician, told me he couldn't have autism because he was too "social" or "friendly" or "smiley." He's still all that. He also has autism. 

Even before he was diagnosed, I started interventions aimed at autism. We started with floor time first (toddler) and eventually moved to RDI. We did vision therapy. I acted "as if," even as I hoped everyone was correct, and I was overly concerned. I don't regret those early actions. In retrospect, I think I would prioritized special needs intervention and therapies more heavily in elementary and middle school over school work. But I did my best with the limits and knowledge I had at the time. 

I'm happy to answer any messages if you want more perspective. 

Edited September 8, 2020 by sbgrace

[PeterPan]

2 hours ago, bolt. said:

No, she was a 'late talker' then 'a very late talker' then 'the doctor is concerned' and eventually ASD.

Oh heresy!! We must never question the late talker narrative!!

Snort. 

Oh man, now I'm getting started. But that book just totally gets my goat. For someone to assert that our kids should be treated based on STATISTICS and that if it works out STATISTICALLY for a population well then by golly SHUT UP AND DON'T ASK FOR MORE. 

Yeah, I read that book at the time when we were right on the cusp, wondering why my ds wasn't talking. We are finally, 9 ½ years later, basically done with speech (articulation, not language, still have language goals). He STILL has IEP goals for articulation, but they're such that they can be reinforced with telehealth rather than requiring use to drive 2+ hours each way for hands on therapy.

If I had believed that "late talker" book and his statistical mess, I would have had a kid who couldn't talk, oh like in the video below... instead, my ds has beautiful speech. But don't even ask what it took to get there (money, miles on the car, hours upon hours of therapy and at home) So yes, the late talker mess is just, well our kids are not statistics.

https://www.youtube.com/watch?v=un3jpgooYAc

Edited September 8, 2020 by PeterPan

[PeterPan]

7 minutes ago, sbgrace said:

his pediatrician, told me he couldn't have autism because he was too "social" or "friendly" or "smiley." He's still all that. He also has autism. 

YES!! We get this too. Ds is socially motivated. It's actually a great thing, because it means the person working with him can use that relationship as reinforcement instead of food or stuff. Just playing together is reinforcing to him and motivating. 

[PeterPan]

5 minutes ago, happysmileylady said:

DD9's speech patterns immediately trigger the "something isn't right" vibe in folks. 

Total aside, but it's pretty common to have prosody issues with ASD. Has she had an SLP eval to work on it? 

In reading materials, prosody falls under *fluency*. I just started using this program https://www.teachercreatedmaterials.com/p/poems-for-building-reading-skills-level-1/50675/  with ds. It comes with audio cds and I have him reading along, trying imitate the ups and downs of the reader's voice. He finds it quite challenging! It might be working, because tonight he started talking in an accent, imitating a voice he listens to a lot on youtube. So I think working on prosody turns that lightbulb on.

Some SLPs are using ESL materials for prosody, but I couldn't find any. They're probably out there, because I know I saw a reference to something. It's just I found this poetry program after watching a Rasinski workshop and decided to go for it. He also has a series for fluency using longer texts. Ironically, the cds for that are read by *Jim Weiss*!! Dude, I hate that man's voice. But I guess he's the model of perfect prosody, hahaha.

[PeterPan]

11 minutes ago, happysmileylady said:

trigger the "something isn't right" vibe in folks. 

Also, another trivia point the op might find interesting. If you look that Social Communication Profiles Lawyer so kindly linked for you, you'll find that literally that *gut reaction* to a person is something that distinguishes the social communication profiles. They'll call it a "social pass." My ds generally, from almost everyone, gets a "social pass". People don't have to know his diagosis or what's wrong. They just walk up, meet him, and they know something is a little odd. He gets a "social pass" on his behavior because people just get something is up.

So literally, SLPs are told (by Michelle Garcia Winner, author of those social communication profiles) to use that gut sense clinically. It tells you a lot. It has also explained the rare occasions where we've gotten into situations where someone was consistently treating my ds VERY INAPPROPRIATELY. Almost everyone gives my ds that social pass, because they can't put their finger on it but they know it's there. But if they *don't* do that, they end up with really inappropriate expectations and get really really pissed at him really fast. It pretty much destroys their ability to work with him. 

So whatever, that's rabbit trails. I guess I'm just saying those were really good tips on reading the profiles and noticing how others respond to the dc.

[kbutton]

16 minutes ago, happysmileylady said:

In our case, it's actually the opposite.  DD9's speech patterns immediately trigger the "something isn't right" vibe in folks.  And when people have poor communication skills, it tends to be assumed that they are less capable in other areas.  It's not even on purpose, it's just natural that when people communicate at a lower level, others interpret that as functioning on a lower level.  So when people hear her, they tend to adjust in ways that.....aren't necessary.  I have often heard of people who are heard of hearing describing others "speaking down" to them when they realize the person doesn't understand.  But it's not the concepts or the thoughts that aren't understood....it's the actual words as they are being spoken.  

I am sorry that happens! I know what you are talking about--I have to check myself to not do that to people sometimes (it helps if I've gotten to know them), and my other son sometimes gets that treatment from others. He has apraxia of speech, which is caused by a hypermobile jaw, and he has a very recently remediated auditory processing disorder. He's not the one with autism, ironically. 

[Lawyer&Mom]

31 minutes ago, PeterPan said:

Total aside, but it's pretty common to have prosody issues with ASD. Has she had an SLP eval to work on it? 

In reading materials, prosody falls under *fluency*. I just started using this program https://www.teachercreatedmaterials.com/p/poems-for-building-reading-skills-level-1/50675/  with ds. It comes with audio cds and I have him reading along, trying imitate the ups and downs of the reader's voice. He finds it quite challenging! It might be working, because tonight he started talking in an accent, imitating a voice he listens to a lot on youtube. So I think working on prosody turns that lightbulb on.

Some SLPs are using ESL materials for prosody, but I couldn't find any. They're probably out there, because I know I saw a reference to something. It's just I found this poetry program after watching a Rasinski workshop and decided to go for it. He also has a series for fluency using longer texts. Ironically, the cds for that are read by *Jim Weiss*!! Dude, I hate that man's voice. But I guess he's the model of perfect prosody, hahaha.

So my daughter has fairly normal prosody when she speaks, but when she reads aloud she shifts into a really flat nasal monotone that is very difficult to understand.  I probably should mention it to our SLP...  It’s very bizarre. 

[PeterPan]

29 minutes ago, Lawyer&Mom said:

So my daughter has fairly normal prosody when she speaks, but when she reads aloud she shifts into a really flat nasal monotone that is very difficult to understand.  I probably should mention it to our SLP...  It’s very bizarre. 

Oh that's interesting. Like I said, Rasinski has a bunch of books for it, several series. Do you think there's anything going on with difficulty reading? How is her reading comprehension when she does this? In general they'll say there's a strong correlation between reading fluency (including prosody) and comprehension. https://www.amazon.com/Increasing-Fluency-Frequency-Phrases-Grade/dp/142580277X/ref=pd_lpo_14_t_0/144-8729530-7660846?_encoding=UTF8&pd_rd_i=142580277X&pd_rd_r=f598eb41-1180-4e18-b82b-58562333a963&pd_rd_w=QjaRp&pd_rd_wg=iBf6G&pf_rd_p=7b36d496-f366-4631-94d3-61b87b52511b&pf_rd_r=QQE68S0CWFC2NBHADGHF&psc=1&refRID=QQE68S0CWFC2NBHADGHF  This is the grade 2 book for the fluency series that uses Jim Weiss for the cds. The models in the gr1 are shorter. I forget the age of your dd. I'm planning to start my ds on the gr 2. Of course, I'm kinda like the King of Siam thing (thousand dreams that won't come true, haha).

[Lawyer&Mom]

45 minutes ago, PeterPan said:

Oh that's interesting. Like I said, Rasinski has a bunch of books for it, several series. Do you think there's anything going on with difficulty reading? How is her reading comprehension when she does this?

I think her comprehension is fine.  I think she is just reading aloud for herself, and has no awareness or concern that her audience is supposed to be able to understand her.  If we ask her to slow down she gets clearer, but she usually reverts back to her regular pace. 

[gardenmom5]

Aspergers experts.  They also have a bunch of their videos online.

I didn't really "see" anything with 1dd until she was 12 when the effluent hit the fan.  She was diagnosed as an adult, after much searching - and things made sense.

dudeling  . . . . . when did I "notice" something was off? at the LATEST by the time he was nine months old.  Out of five kids - he was the only one I had to take into a pitch black silent room to get him to calm down.  there were too many things "off" about him.  He did things I hadn't even heard of other kids doing.

[LucyStoner]

In hindsight for my older son:

• He wanted his own space.  He didn't like being held much he was little.  (My other son is also autistic and this wasn't at all the case for him- he was a snuggle-bug from the start).  
• His sensory reaction to baths/water from day one was one of the most intense things I have ever seen.  You would have thought that he was being boiled alive.  We did everything we could to get to the point where baths were tolerable.  I don't believe in reincarnation but I remember telling my husband that it was as though he had drowned in a past life.  
• He was hyperlexic and without instruction knew all of his letters and sounds and read his first words before he turned 2.  
• He was big on categorizing things from a pretty young age.  Before kindergarten, he would make charts to track things.  For instance, the number of pink and blue cotton candies that the vendor was selling at the baseball game.  
• He didn't speak much and he was late to start talking but when he did start talking, very quickly it was long sentences, often ones he had heard someone else say.   
• He didn't recognize people who were not his caregivers out of context.  Years later we learned he experiences face blindness and it suddenly made sense that he never recognized preschool classmates outside of school and was highly distressed if we changed something big about our own appearances- for instance, my husband shaving his beard and me going from long hair to a pixie cut.  
• His food aversions were next level.  People say kids won't let themselves starve.  That was absolutely ridiculously false for this kid. 
• Very hard transitions even when the transition was from a less preferred activity to a more preferred activity.  

As for what I would do differently?  I wish he'd been diagnosed sooner.  Our concerns were largely brushed off as us being helicopter parents.  I would have liked for him to get OT and ST at a younger age.  

In our case, it runs in the family.  

 

Edited December 18, 2023 by LucyStoner

[Innisfree]

1 hour ago, LucyStoner said:

sensory reaction to baths/water

Oh my word yes. Giving her a bath required both parents for safety, and I still was so scared she'd be injured. Slippery, soapy, thrashing, screaming toddler. We minimized things, but sometimes a kid has to get clean.

Food aversions, yes again, though that came a bit later for us. 

[PeterPan]

8 hours ago, Lawyer&Mom said:

I think her comprehension is fine.  I think she is just reading aloud for herself, and has no awareness or concern that her audience is supposed to be able to understand her.  If we ask her to slow down she gets clearer, but she usually reverts back to her regular pace. 

Sounds like just her flat affect when she's not hiding it. She probably turns it on and off. I still think working on prosody is a good thing, even if people aren't saying anything about it. (deep dark insecurities speaking)

Edited September 8, 2020 by PeterPan

[PeterPan]

16 hours ago, lynn said:

what would you have done differently. 

Specific to my ds, we should have gotten the VBMAPP done and begun expressive language therapy earlier. We didn't really have the money. (We were already covering $$$ for his apraxia therapy). There's this sort of anti-ABA trend, but the VBMAPP that they use would have caught a lot of the issues we needed to work on. Once the kid *seems* to function at a certain language, they don't bother with the VBMAPP (skills through age 5) even though the dc has holes. So when you let things go too long, you get holes that are really hard to go back and get fixed.

Play Project. Anything in that vein where you get trained to play together productively. Well that and just be omniscient and know everything immediately that you're going to know 10 years later. Sigh. We ran genetics that helped us make a big difference in stabilizing his mental health. I wish we had gotten his anxiety and aggression stabilized sooner. 

What I DON'T regret? Playing with my ds.

[kbutton]

10 hours ago, Lawyer&Mom said:

I think her comprehension is fine.  I think she is just reading aloud for herself, and has no awareness or concern that her audience is supposed to be able to understand her.  If we ask her to slow down she gets clearer, but she usually reverts back to her regular pace. 

Does she know how to use punctuation cues to vary her expression? My son's Kindergarten teacher taught him how to do this very effectively (reinforced by first grade teacher, I think), so he's always read with expression. 

It's not uncommon IME for kids to read in a monotone until or unless they are taught punctuation cues. 

[Lawyer&Mom]

4 hours ago, PeterPan said:

Sounds like just her flat affect when she's not hiding it. She probably turns it on and off. I still think working on prosody is a good thing, even if people aren't saying anything about it. (deep dark insecurities speaking)

I think this is it. There can definitely be a performative aspect to her conversational prosody.  Sometimes she sounds like she’s auditioning for a speaking part in a Doublemint commercial...

(I know all about the deep dark insecurities.  Raising an Autistic daughter who will not get a social pass is daunting, and definitely resurrects my own childhood traumas.)

[MercyA]

.

Edited September 10, 2020 by MercyA

[Tanaqui]

My mother swears she knew in infancy with me because I wasn't snuggly and couldn't bear to have things with me in the crib, and also I didn't make any sort of eye contact in early childhood.

I don't know for certain that this is the case, because of course I don't remember being an infant, but I do know that I knew that my kiddos probably weren't autistic when I saw them pointing at things in early toddlerhood, looked it up in the guidebook, and found out that this is age appropriate behavior. I never pointed at anything, at all, ever until I was nearing my double digits. I still avoid it - even when I do point at things, people never seem to know what I'm pointing at, so why bother? (Now that they're teens I still don't think they're autistic, however, as is perhaps expected, they both have ADHD. You often find the two things in the same family.)

I also know that I spent a lot of my childhood with my parents trying to get me diagnosed. My mother says now that they were trying for an autism diagnosis, but they couldn't get one because nobody was handing out autism diagnoses to highly verbal girls back then. I know that it's true that there is no way I would've gotten a diagnosis in the late 80s/early 90s, and I remember these assessments, so I believe it's likely true that my parents had a specific diagnosis in mind.

Many of the things that people mention upthread are things I did as a child... and a teen... and an adult... and now - but they went right over my parents' head because, like many people with autistic children they have an entire extended family on both sides full of people on the broader autistic spectrum, and they mostly associate with other people like them (I think this is how they met) and so they thought these things were normal. Lining up toys is normal play, getting upset when things are different from expected (even good surprises) is normal behavior for a child, speaking in complete sentences without really babbling is normal, reading at the age of three is VERY normal, weird food jags is normal, extremely poor motor control is normal for lefties (and I am left-handed), developmental foreign accent syndrome is normal for our family, and so on.

[Janeway]

None of the symptoms that others listed for us. And even as my children have been older, they still want friends and to be around people and such. The first symptom, which a teacher called a red flag, was our oldest reading at 3 yrs old. Every child is different. I have heard people say their child could not possibly have ASD because their child doesn't flap arms or spin in circles, Well, those signs are not present in everyone, and in my children's cases, none of them.

[Innisfree]

I thought of a couple of other things that were very early alarm bells for me.

Dd was a runner. She dashed, fast, pell mell, straight line wherever that went. Into the street, into the river, waaay down the row at the U-pick strawberry field. Then you'd catch her, and she'd do it again. She thought it was fun, and a great thing to do, and she didn't pick up on the fact this wasn't fun for you after the third time. Alone, seems like just toddler behavior, not something to get worried about.

I had a friend who was a really great kindergarten teacher. When dd first knew her, we were all hanging out together in the hallway waiting for older kids' dance lessons. Dd was so very shy and quiet. She was two, but acted younger there, in a new environment. She wanted me to hold her, and she'd have her head on my shoulder and her fingers in her mouth. The other moms said oh, how cute, how old is she. And they seemed a bit startled when I said two nearly three, because the other siblings that age weren't acting like that.

And then kindergarten teacher's kids came over to play with older dd, and the teacher and I talked, and dd got to know her better. Dd's behavior did a 180 degree turn. She liked this new friend, who was so good with little kids, and she got playful. She'd climb on the teacher's legs to be bounced, over and over and over and over and over, laughing and excited. And again, she wouldn't understand when her new friend got a bit less enthusiastic, and I was embarrassed and pulling her off and saying it was time to stop. She'd keep trying for the whole entire visit, and the only thing that would stop her was me physically holding her, and then she'd be upset. Again, she's a toddler, right? But when I saw it in person, I thought something was off, because of the degree.

Now, I look back and say oh, she was missing social cues, and she was seeking sensory input. Then I just saw the insistence and persistence of these behaviors, and the fact that she wasn't understanding what I was telling her. It worried me, but no one else thought this stuff was significant at that point, because toddler.

 

[Wheres Toto]

Extreme sensitivity to light, noise, textures, tastes, temperatures.  In particular, certain noises like fans or blowing that didn't even need to be particularly loud.   He seems to be a super taster, and even now won't wear anything but sweats and tshirts. 

Trouble with baths that got better when we made them warmer than usually recommended for babies/toddlers.   He still basically has a narrow range of comfortable temperatures.

Speech delays but spoke in his own language with typical inflections and cadence, just no understandable words. 

Needs routines.  Until he hit the teenage years he basically ate on a schedule.  Wouldn't necessarily feel hungry but x time was lunch, x time was dinner, and he'd get upset if it was too far off especially if it was without warning.  

Intense interests.  For a while it was Pokemon, he knew EVERYTHING Pokemon.   Liked playing with figurines but not in a typical pretend play way, more just lining them up or making patterns kind of way.  

Needed explicit instruction on social behavior, help reading social cues.  He's better now but still obviously not typical.  

Hates being touched.  As a baby he liked being held a lot and it was the only way he would sleep, but outside of mom/dad, he's always hated anyone touching him and will cringe away from even mom and dad now.  Especially if it's done without warning.   If someone (like gramma) asks for a hug, he can gear up and do it for a couple seconds.  

I don't think we would have changed too much, but I wish we had known sooner because understanding where it was coming from would have made a lot of things easier.  We wouldn't have pushed certain things, would have known a better approach for other things.