When did you know?

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I thought it would be interesitng to share here the dev of our ASD kids, what was typical and not so typical for their dev, what and when did you realize there were issues, when did you realize it was ASD?

The beginning dev and why I never thought ASD:
Jaydens dev started off typical. He met all physical milestones early, he talked by age 1, waved, pointed, made eye contact, smiled at familiar people, had joint attention.
He was speech delayed but he also had a cleft lip and palate so we expected it to a degree, but he always had speech. He always had words and was able to get his needs met and never frustrated as a toddler.
Jayden has imaginative play, imitative play, he was social and LOVED to be around people, he was very affectionate, very huggy and kissy! He would hug ANYONE who stood still long enough (still will to an extent this day).
Jayden loved toys, would play appropriately with them. never fixated by parts of objects, a car was a car and he would roll it and make car noises, he had toy vaccums and made believe he was cleaning like me, toy telephone to make believe he was talking like me, etc...he played with every toy he owned! He also loved to play tickle, chase and ball.

Somethings not so typical, but not alarming either:
Jayden used to jump when excited. He was obsessed with electronic toys like laptop computer toys that made sounds and showed something on the screen. While he would play with lots of toys, those were his favs, he memorized them, in turn, teaching himself a slew of info before 2 1/2, that most Kindergartners know.
jayden was easily overstimulated.
Jayden used to imitate too well. TV shows, computer toys, any and everything that he saw he would imitate it like he was replaying a movie.
Jayden had a form of delayed echolalia, where he would use lines from TV shows but use them appropriately in conversation. His speech therapist at the time thgoutht that was great, cause he was learning to use sentences and use them appropriately.

Some things that had me puzzled as he got bigger:
We had a period of a few months where Jayden would run his hands along fences and walls. He HAD to do it. It drove me nuts and luckily it was short lived and he was easily redirected from it.
Jayden never liked to participate in circle times, he would go to the back of the room and participate there, but never liked to sit in the group.
He was unphased if he was playing and a kid took the toy right out of his hands. He didnt even flinch, cry, protest, look at me, nothing...he would just move onto something else. I used to worry that he would be a pushover...lol. He sometimes seemed oblivious to things that other kids would have gotten mad or had a fit about.
While he was extrmemly social, made eye contact, loved to imitate people, he COULD totally tune you out. Usually if someone got in his face or he was busy with something, he could completely tune that perosn out. He never did it with me or close family or freinds, but I saw it with Drs, other kids or other adults. Id say if I didnt know him and just saw him tuning out, Id think he was autistic. WOW I used to say that!! !
He used to imitate adults more then peers. I woudl take him to the lib to play, and he would pull up a chair, sit next to the adults, even get a magazine and pretend to read it, all the time looking at the adults and adjusting his behavior to match theirs. Meanwhile all the other kids were playing trains or legos...he didnt do this EVERY time, but often enough and none of the other kids did that!
He had food sensitivities, could only eat certain foods of certain tetures and consistancies, not alarming as this is typical dev for cleft palate kids.
he coudl figure things out without being tought, he liked to work things out for himself and once he did he had ti to memory forever.

He had anxiety as a preschooler. He would get clingy and cry or act out in large crowded or loud places. He refused to play or even be put down at play places, family parties, certain kids birthday party places, etc...
he played with OUR hands. He loved to make up stories about "mommy hands" and "Daddy hands" and "Jayden hands". They all talked, he made up voices and storylines for them (still will to an extent today).
As he got older, he still paralell played with peers, he flat out REFUSED to play with more then 1 kid at a time when he did play witrh them. He rather play with adults, or kids younger.
His pre school teachers adored him and he was the best behaved in class, they had ZERO behavioral issues or concerns and wanted him in a typical K class. They did say he was quieter in class then the other kids, never got in trouble or joined in when the other kids were acting out, and mostly paralell played with peers.
He chews his hands and fingers and anything he can get in his mouth.

As he got even older, he was having meltdowns, tantrums, special interests that took over lmost to OCD level. He wasnt catching on to social cues, body language, presonal space, everyting HAS to be his way or he cannot cope. He is argumentative, would rather not play with kids his age, still loves younger kids and adults.
He is super smart. Show Jayden once and he knows how to do it, he has almost a photographic memory. He is grade levels above kids his age, and math and music are even higher then that. He loves numbers, loves math, figures out mathmatical patterns, as a toddler and preschooler he could figure out any electronic device, and to this day still the same. He doesnt want to be tought houw to use them he wants to figure it out himeslf. And he always does and figures out more then we as adults know!
His interests werent age appropriate to his peers. he was obsessed with boradway musicals, and classical composers at 5. He coudl tell you any and everyting about them.
now he is obsessed with mario and luigi video games...lol. Makes him more approachable by peers, so I actually see good in that, not taht I love it.
he still has food sensitivities, he still chews things, he still is obsessed with electronic devices, he is still super smart and likes to figure out and create ideas.

Jayden was diagnosed with Aspergers the summer that he turned 6. I NEVER imagined my son had any ASD, and as a baby, toddler and even preschooler, he was mostly typically developing with a few quirks. It wasnt until social demands got greater that I really saw major issues, and pushed and fought to get a diagnosis. Even doing that I NEVER imagined it woudl be ASD. He was too social, imaginative, lovey, boy I knew nothing about ASD!! !

This sounds so much like my 6 year old daughter. Do you have any advice . The few people here who do testing are reluctant to diagnosis aspergrt and as with you symptoms are not textbook...he has not been diagnosed but with all research and symptoms I believe my husband also has asperger.

Had I not persued and not insisted on taking him until somone LISTENED, I probably would still have no answers. I had NO IDEA he has ASD, but I KNEW he had something. He was just not like the other kids, and he had issues that were interfering with daily life. I wanted to understand him and know how to help him and in order to do that I needed to know waht we were dealing with.

In a 1:1 situation, my son can be extremely appropriate, and he has beautifully thought out ideas and answers to situations that they would ask him about. Like what to do when a freind upsets you, or takes your toy, or touches you piano...things that in real life he might bite or scream or tantrum about. Well, he would have a wonderfully insightful answer in the offices, and the professionals were baffled casue he seemed fine!

it took me taking him from Dr toDr. from professional to professional, until I got someone who listened, and worked with him for a while before telling me there was nothing (or something) wrong.

I say dont give up, dont stop seeking help until someone listens. It was so frustrating, those people didnt see him at parks, at freinds houses, at our house, in stressful situations (stressful to him), etc...yet they were telling me nothing was wrong. I was told Aspergers and was in shock, casue I thougth I ruled out all ASD. He wasnt monotone, he was affectionate, he made eye contact, he was social...I had stereotypical ideas in my head about ASD....that was why I though no ASD for him. BUT Aspergers explains it all, even his young dev...

keep on going until somone listens!

I always knew my son was different, but I never considered ASD, which was less understood then (things change fast!). It all came together when he was 7, that is when we knew it was ASD.

It appears that you were lumping Asperger's Syndrome along with classic Autism until recently. Asperger's is at the high end of the spectrum, and is different in many ways from classic Autism, although there are also many similarities, too. Aspies very often don't have a speech delay, some of us are fairly social, and some are even able to manage eye contact on a regular basis. Unfortunately, I am not one of the social ones, and can't handle eye contact good. Much of what you described about your son's earlier behaviors is actually not unusual for any kid, but some of the later behaviors do appear to fit the spectrum.

Don't be too upset with the doctors for having trouble diagnosing your son. It is difficult to diagnose spectrum disorders at an early age, because many of the symptoms are actually not abnormal for any young child. It is just when the child doesn't outgrow them, while peers do, that it starts to become apparent that there is something different about the kid.

Because your child is one of the more social types, that should help him as he gets older. Not being social myself has definitely been a problem for me, but for me it is too uncomfortable to be very social. I am a hermit type, an introvert. As for your son's preferring to interact with one other kid at a time, it has to do with sensory overload. Dealing with more kids at a time causes sensory overloads and stress for him, so don't try to push him into group play. At least he plays with someone else one-on-one. In my case it was mostly one-on-none when I was growing up.

Spectrum disorders are caused by a neurological problem. We are "wired" differently than other people. Because every brain is different, each person on the spectrum is at least a little different than the others in how our disorder manifests itself. There is no cure for our disorder, but it is understood better now, and treatments are now available to help people learn to make the most of themselves, as well as cope with their problems.

I hope this all helps you understand us better.

I honestly believe I knew almost immediately. Maybe it was the autie traits in me subconsciously recognizing them in him. Maybe it was the baby books, though he met most of the milestones at the pediatrician's. But something about the way he responded to us seemed off. For a long period, he arched and wouldn't let us hold him while feeding -- we had to feed him in his bouncy seat. And the way he stared so intently at things was unsettling. Then as he got older he never waved, and he didn't check in with us a toddler much -- he'd just run off. It was only when the other kids his age were outgrowing stranger and separation anxiety that he became clingy. He is still very clingy at age 10, though much more independent in many ways.

He was very outgoing and cheerful and utterly charmed adults as a baby and toddler -- the first evalulators for early intervention said he just squeaked in with what they thought was a auditory processing delay. (His dad has this as well, so not surprising.) Most people thought I was nuts for being worried. It was only when he started getting some therapies that someone else noticed his unusual play and perseveration.

Good question. I like hearing about this from others. It's kind of a helpful process.

As far as my son (just diagnosed Aspergers/almost 5) is concerned, most people would never think he is ‘on the spectrum’. They think he is sensitive, quirky, smart, distracted, clingy at times . . . but for the ones with whom I have shared his ASD diagnosis, they often have an ‘aha’ moment for his quirky behaviors. And for the ones who have kids who are HFA, they ‘knew’ before I did most of them.

I guess in some kind of way I always ‘knew’ but denied it. Let me explain. We knew he was not a ‘typical’ baby. From birth, he had severe GERD, he screamed and cried EVERY bath time as if it were agony for him (until the age of 2!), he would stiffen or go limp when we tried to take him out of his seat/high chair—so much so that at 1-2 years old getting him out of his high chair was often a two person task! He didn’t like toys much at all—that was the first thing that really concerned me—he didn’t play with toys. He lined them up or tried to take them apart. He wanted to pull them apart and see how they worked—that was ALL he cared about. So, a toy that didn’t come apart made him scream and cry.
Why did I deny what signs did concern me? I had read about ‘high need’ babies and figured a lot of the difficulties were just his high-need wiring (difficult birth). Also, he was meeting all of his developmental milestones, such as sitting, smiling, cooing, etc. He walked before he was one, and his vocabulary was way beyond that of his peers. We knew he was very smart. At the age of one, even our friends called him ‘cranial’. So, we just figured some of it was his quirky smartness. And, I suppose it is!
Also, the ‘Autism’ word came into my mind, but I had read that babies with autism don’t make eye contact at all, refuse to be held, knock their heads against a wall, can’t speak. So, every time it came into my head, I told myself I was crazy. My son smiled, and he loved being held! It was just passive. In fact, we couldn’t put him down. He had to have some kind of human contact in order to sleep. That was tough the first year. And now I see it was a part of his sensory issues.
Honestly, I wish every time someone put out information on autism (websites/baby books), they’d try to make it more balanced. I guess it’s getting that way now, but it seems like four years ago, every time I read something about autism, it only mentioned signs like no language, all-day rocking, refusal to be held.

I only became seriously concerned, when by the age of four, he was having serious problems interacting with peers, especially at school. His stimming at school was bothering classmates (spinning/jumping/occasionally flapping). Also, he was still only scribbling and could not color/draw/write higher than the level of a 2-year old. However, since the age of 2, he had been able to do 30+ piece puzzles on his own and make intricate lego designs. I started realizing how unique he was and yet how much some of that uniqueness was going to be a problem without guidance. Another thing that made us think more seriously about a professional opinion was that he was becoming increasingly rigid in his expectations/behavior, and would have DAILY enormous meltdowns over very small things. We knew our discipline style was healthy and consistent, yet he wasn’t growing out of these things, they were getting WORSE. He wouldn’t respond to his name, wouldn’t respond to questions, wasn’t understanding us. And yet we knew his speaking level was incredible for his age. AND his now 3-year-old sister was listening better, following instructions, not melting down. That helped us see him in a different light. We kind of came to the ‘end of our rope’ with trying to figure him out and went in for professional help.
He also started talking at the age of four about the ‘maps’ that were in his head and how those were interfering with his ability to listen well, and how anytime someone touched him his maps got all out of order and he had to ‘start over’. Wow, talk about realizing your child is definitely not NT!
Anyway, we finally got our diagnosis. He scored WAY into the autism spectrum based on the ADI-R, but then just at the ASD cut-off on the ADOS, so . . . they went with Aspergers. We’re fine with that.
Now that we are approaching him as ASD and implementing suggestions for that, we are seeing a huge reduction in meltdowns and much improvement in behavior. Still having school/academic issues, but we are hoping a new school with a real IEP in the fall helps that. Praying for that option to come through.

Angelgarden, same here. I kept thinking autism, but the info I'd find online made it seem ludicrous. (Or too terrifying to even contemplate.) The kids described were nothing like my healthy, smart, smiling baby. But something in me just knew.

I'm bummed to hear that as recently as four years ago, you still weren't getting balanced information.

Although I wasn't diagnosed I'd long since realized I was Aspie and figured all along that my son would be too but realized at around 18 months when he lost all communicative language that he'd regressed into a more classic state of autism. He had a laundry list of red flags but the only thing the pediatrician took seriously was lost language.

We always knew DS was 'quirky', that there was something different about him but it was only when we were sitting with a developmental paediatrician talking about all him, his habits and behaviours for a solid hour that it hit me.....Oh my god - he's autistic, he's high functioning but he has autism.
In hindsight, now that I have read as much as I have and spoken to so many people, it's as plain as the nose on his face but 6 months ago, I didn't have a clue. He was just a quirky, intelligent, interesting boy who is not afraid to be himself.

Not until our son was 14 years old--three weeks ago. He's always been a difficult child. Looking back, I can easily see how he could have been diagnosed as early as preschool. He desperately wanted to play with the other children in his school, but was not a popular child. He lacked (and still lacks) any sort of imagination, so never experienced creative play. If we deviated from our daily routine, he was irritable and moody. He used to scream "I HATE YOU" almost daily. Not once in his entire life has he told me he loves me (without being prompted).

He was our only child up until six years ago, when his brother was born. So, we thought his behavior was normal. Only last fall did I notice something was wrong--his total lack of empathy. He absolutely could not understand how the things he said and did hurt his brother's feelings. We tried counseling and it didn't work. Last month he threatened suicide--in part due to being bullied in school. After we admitted him to a behavioral health hospital did we find out he has PDD-NOS (and I suspect Asperger's). Had we known earlier, it would have prevented so many, many heartbreaks.

This is an interesting post, thanx!

Questor.....just want to quickly ask you something....do you have Aspie kids?

MMJMOM.....Your story sounds exactly like mine....I could have cut and paste your post!

As a baby my son was always very serious....now I know it might have been because he showed less resiprosity or facial expressions! He had reflux....had these terrible crying that would last for 2 hours.......

He was very sensitive to light and noice, since very young.

But he reached all his milestones, always very clever.....the only thing that was delayd as baby was that he didnt want to weightbear on his feet....maybe because of sensory issues.

He had plenty of food allergies and intollerance, but looking back....I am wondering if the reactions that we saw was allergy related or "something else"!

He didnt have much fantacy play....this did worry me a bit, but because he was so creative it wasnt easily noticed....he also acted out his favourite Toy Story caracters......could remember all the words...even up to today he has an amazing memory...it tested at 11.5 yrs! He was obsessed with superheroes...spiderman suits, exct. But this I saw as normal development....looking back I can see it was exsessive!

He didnt enjoy playing with cars and stuff, didnt really imitated the sounds....he was VERY clever with taking stuff appart, had his own screw driver...he took EVERY thing appart....at age 4 started taking his bedroom door of! People would often comment on how clever he was...like a little professor!

He made good eye contact, even till today he would, but again, looking back....I had his hearing tested twice, because I thought he struggled to hear because sometimes he would look at my mouth while I speek.

He has always had seperation anxiety...even till today!

His speech were delayed till age 2, but then he started talking withgreat vacabulary and info.....but he wont easily show empathy or ask questions back, exct.

He never enjoyed being part of a group....at parties he would prefer observing or sitting on my lap or playing alone....he was easily bullied, because he doesnt easily ask for what he wants.

He has always been the model, quiet, obedient child in class.....but as he got older I realized its most propably because of anxiety or not realy understanding all the social cues and whats expected......

Since he was a baby we had a great relationship, but I often felt pushed away by him, as if he didnt like me.....but I looked for the problem within myself....

When did we start looking for help.....since age 3 I took him to playtherapists, because something was bothering me.....but I didnt know what...I was worried because he struggled to potty train and also the tantrums.

When he was in grade 2 and the social demands increased and he AGAIN for the 4 yr in a row complained of being bullied I started to realize....maybe he misreeds the other kids behaviour or dont react appropriatly.....his meltdowns also increased.

First he was diagnosed with. ODD.....but when a pdoc took more than 3 hours of listening to us....she said he has atypical autism, maybe AS.....I thought he had mood dysregulatory disorder...but I was in great shock to hear that it was ASD.....what made it worse is that a good neuro then said he doesnt agree with her, but he only saw my son for 30 minutes and all the stuff I told him he dismissed as bad behaviour!
He had an OT assessment...she confirmed his profile fits ASD and diagnosed sensory prosessing disorder...He also had ST assessment and has auditory processing disorder. The ST and OT is helping alot....He is also on meds for anxiety and OCD traids.

So we are still at a place where we know something is out of the norm......pdoc is 100 percent sure of her diagnosis....we actually agree with her, but we are still struggling with acceptance.....

All of the above there is SO much my son! Funny, how I can read something and think . . . wait, did I write that? I can't say the 'model child' in class part, though, haha . . . he moves around too much and bothers his friends, and grabs things without asking. BUT that is starting to get better!

Funny side note: Just today was talking to a casual friend who we've known since he was probably 1 or 2 (who doesn't know his 'diagnosis'). Just mentioned a need for speech therapy for our son and his seizure stuff, and the friend cautiously said, "I kind of always thought he might have high-functioning autism." Lol. I guess more people noticed his quirkiness than I thought! Sometimes with parents it's a classic 'can't see the forest for the trees.' We see how smart and lovely our kids are and focus on those things instead of their weaknesses. (I've had plenty of people tell me they think there's nothing wrong with him as well.)

A friend has a daughter on the spectrum, who was known for her odd version of talking when she was little. During the diagnosis process, my friend commented that it was really sad to have something she'd thought of as cute and charming be pathologized. Similarly, my husband used to adore my son's "art" until his diagnosis, when suddenly lining things up in odd ways no longer seemed creative to him but just a symptom of autism.

Good point. It is true even the quirkiness, in our parent love, becomes cute or sweet...or simply overlooked and rationalized. When my son started lining toys up at the age of 1, we thought it was smart, cute, organized, artsy. He organized by color or type or preference. Future genius we figured. I was happy he wasn't playing 'hyperactively' like his friends--running, zooming cars all around the room and making car noises.

When he hid behind a door because he was 'shy' or afraid, I thought he was sweet and sensitive, and just very shy. The label 'shy' excused so much of his anti-social, clingy behavior.

When he'd watch a funny video he liked, and jumped up and down shrieking and flapping his hands, I just figured he got a little more excited than other kids at times.

He'd make a funny, nasally voice often when in social situations and nervous or trying to talk to someone. We got used to it, and didn't think much about it until a friend (who is a behavioral therapist) said . . . 'That's so funny. Does he do that often?" And again, "Wow, that is so odd! Why does he do that?" And we started realizing other people may not find it so endearing as we do.

Too bad we don't all have developmental psychologists for best friends to lovingly help us identify what we don't see. Of course, I would never change who he is, but recognizing things a little sooner would definitely have been better for him and we'd be having less issues now (perhaps. hindsight is 20/20, right?)

Lining stuff up and stacking things is to autism as pretend play is to NTism. Both are signs of normal development for different children.