Hi I am new -- When did you know?

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Hey everyone -

Hi there,

First of all, Happy Holidays, I hope your holidays were great. Today I am just enjoying the peace and quiet and recovering from the food coma

I am from the Pacific North West, and have an 11 year old son who hasn't been diagnosed with anything, other than being identified as profoundly gifted. I am not sure where to begin -- and really have no idea what direction to go. While I am not a clinician as my son's mother I know something's different. I have known since we received the news about my son being profoundly gifted that he wasnt neurotypical. In fact, I had him screened for Autism at the age of two and was actually chuckled at by the doctor there being told I was an overly worried first time mother and he was "just fine" and I should be thrilled that I had a child who was incredibly bright and engaged. (He didn't seem engaged to me compared to other kids). I also got the lecture about comparing my son to other children, that it was a disservice to him.

Things smoothed out when he was three, four, and five -- when he entered Kindergarten at six is when I began to notice that my son had issues with things that other kids did not. For instance, he could never transition from one activity on to another without being explicitly told what was going to happen. We could never (and still can't) go anywhere unless he knows the plan, and changing plans are tough on him. He has a tough time (still) following more than two things to do at a time.

From age seven up until current day he explains everything in intricate detail, obessing about specific things. When you first meet my kid he seems introverted until he feels comfortable and then he will talk your ear off again about a specific topic. Right now today it's anything and everything to do with minecraft. After 20 minutes of listening to him talk about minecraft I feel my eyes glaze over. My intent is never to be disrespectful and always supportive, but wow I admit even as an adult he often loses me in intricate and complicated details.

He's a whiz in school, doing the work of a highschooler with absolutely no stress. He's obsessive about some things, but in other areas he's a sloppy an unorganized:) I can for instance find where he is in the house by following the trail of things he gets out and doesn't put back (we are working on that). He engages kid, likes to hug (us, his dad and), tolerates hugs from others (sometimes). I wonder if it's his age, he's 11 and doesn't really like it when his girl cousins hug him. He will look you in the eye, but lacks several social skills. For instance he has difficulty understanding the rules of a conversation, but can converse like a little professor with others if he chooses. He likes to look at animals but feels odd touching or petting them. But he will fall asleep if I rub his back. He's very tall for his age, and is heads over his classmates which I wonder if because of his height and stature he's intimidating and hasn't been bullied - yet. (My biggest fear for him).

So this is where I am, not sure what to do for my child, maybe really I don't have to do anything. He seems happy and content, but sometimes I observe him struggling. I just want to do right by him because I love him so very much and as his mother I worry.

Thanks for listening, and take care.

My goal is to help

I don't know that your son has AS, how could I? I do know that profoundly gifted kids are often mistaken as autistic because let's face it, they don't relate to other kids all that well because they really have very little in common. If you haven't already check out http://www.sengifted.org// for the special needs of profoundly gifted kids.

Hi SylviaLynn-

Thanks for your reply. Of course you wouldn't know. I think I didn't articulate my post well enough. My post is for parents of children on the Autism spectrum. My intent was to ask parents "When did you know" -- as in when did you know or realize something was different about your child.

Thank you for the link, I appreciate it.

Have a great day.

I knew something was up when my son was 3 days old, but could have been colic for all I knew then.

At 4 months he had very extreme reaction to acid reflux that looked like seizure's that landed him in the hospital getting EEG of the brain and cardiac testing - the works and all they found was acid reflux and the doc's just scratced their heads at such an extreme reaction.

At 9 months the night terrors started. All the while extreme behavior to sensory stimuli - noises, smells etc.

at 15 months diagnosis with sensory integration disorder and started the diagnosis process for tourettes

at year after confirmed tourettes

at 2 1/2 told he had asperger's but I didn't believe the doc as I didn't know enough and thought it was bull since he had great eye contact and communication skills (adult like speech)

at 3 diagnosed with anxiety disorder with OCD

Kindergarten was told by enough doc's, counselor's and his school counselor that I finally accepted the Apsie diagnosis as well.


Now living with him, through all we've been through and all i've learned I believe I'm also an aspie although I've not been to my doc to ask her about diagnosis for me yet. People who know me are always saying "It's so amazing how you can understand him so well." I always just attributed this to the amazing connection we have between us, but now thinking some of that is hard to ignore that I get it because I've lived it as well.

An preschool teacher with 20 years experience caught it at 2.5, but the regional center psychologist did not.

After severe problems in two preschools, we finally sought a diagnosis at age 5.

Have you thought about how the issues you see your son having might play out when he enters the work world? Could they cause problems in getting and keeping a job, advancing in a career, or living independently?

You might look into social skills groups, speech therapy to address conversational skills, and therapy to address anxiety and/or rigid thinking...

I suspected something wasn't quite right right away but being a first time mom I relied on people who 'knew better'. She had latch/sucking problems and digestive issues immediately. She met all but her physical stats (height,weight) at a uniform 3 month delay.

She never crawled 'correctly'. She tried crawling for 2 weeks and just pulled herself up on the couch and 'danced' - bouncing up and down but not on her toes.

She was fascinated by moving toys - parts of them, not the whole toy. She lined things up, usually by some logical order - height, color, size, etc... since about 9 months.

By two, her physical limitations were clear to me. She was extremely uncoordinated, had no sense of space and didn't do things like climb or run. I lived in constant fear of her hurting herself falling since she was unable to stop herself - she didn't put her hands out or bend her knees to stop herself. She just faceplanted.

Our doctor repeatedly reassured me that all kids develop at their own pace... she had no speech delay so the other concerns were whitewashed. Speech delay was the only thing they seemed concerned about developmentally so she 'passed'.

She was evaluated at my insistance at 3 by the IU and they pointed out that she had some significant behavioral delays and abnormalities. Again, I felt like the worst mother in the world. She was my first - I had never been around children growing up so I didn't know what 'normal' looked like. She has been getting interventions ever since. She was not officially dx's with AS until 8 but she had her interventions all along.

Maturity wise, my daughter is about 3 years behind her peers. She gets along much better with younger children. Unfortunately, physically she looks two to three years older than her 9 years so people's expectations are very thrown off.

I totally understand your question. Some kids are not so 'obvious' ~ they are just a little quirky or slightly different from other kids.

Actually, we still don't have the 'official' diagnosis for my son. He is 4 1/2 by the way. Our evaluation was postponed and happens in a couple weeks.
With my son, there were things from the time he was born that were different from other kids. However, his verbal skills were so excellent that we simply figured that ruled out any potential developmental issues/delays.

What prompted us to think about his 'quirks' further was noticing his first 'obvious' developmental delay, which was the first thing we couldn't just dismiss. That is, he can't color, write, draw at his age level. Although working on it with him quite a bit, we started to realize that no matter what we tried, there was something that was just developmentally not 'clicking' for him. He could still at 4 1/2 only do 'scribbles'. And, he is a very bright, smart kid who loves science and can sit and listen to chapter books without pictures.

Another thing that prompted us to think further was his sister, who is 20 months younger, starting to reach all these developmental milestones and not having a majority of the same 'issues' that we were still having with him behaviorally. His Kindergarten teacher also pointed out to us that he was having 'social' issues at school.

So, all of this happened around the same time, and after I 'googled' developmental delays in writing, I happened upon a description of Aspergers and was surprised at how many things matched up with my son. Things I had thought were just 'him' were actually red flags. Looking back on the things I knew made him different as a baby/toddler, I realize many of them were red flags, but because he's so bright, I dismissed them as issues.
Those things were:

Severe colic & acid reflux as a baby. Had to be on prescription medication for it from 6 weeks to one year old. Still has reflux often but we now use TUMS.
Sleeping issues until the age of 2 at least.
Not really playing with toys--lining them up, organizing them, not playing. (He plays now though).
Advanced verbal skills by the age of 2.
Incredible memorization of quirky things by 18 months--like pointing out every building that was a bank.
Narrow range of interests--basically building, blocks, science.
Sensory issues--scared of noises, sensitive to touch, sensory seeking, etc. I know for sure he at least has SPD. He SCREAMED every bath time from birth to 2 years old. Still HATES his hair being touched. Will hit a kid that just 'brushes' by him b/c he senses the touch as threatening.
Intense fears--fear of swings, fear of most kid videos, fear of other odd things.
Certain routines that he is attached to and must be done--we must park by the blue car b/c he likes blue, we must have EVERY door in the house closed (even closets) before he goes to bed. Games MUST be played his way. Mini meltdowns happen when these things are not done how he has them played out in his head.
Eye contact--ok, he will do it, but it is sporadic. He prefers 'not to' although he will if asked. And he does not answer right away to his name or to questions. It can be hard to 'break through'.

This may be OCD behavior I guess too. Like I said, we haven't got it all figured out yet.
Have two appointments for evaluations in January. Anyway, now that I have been doing tons of reading and research, my DH and I realize that he most definitely does have issues we need to look at that could use some guidance/help and that he is probably not neurotypical. Even though he is smart and verbal, there are other things we can't ignore. Anyway, we'll see what the docs say!!

Your son sounds delightful.

While I always knew my son was different, I was happily unconcerned about it, and very accepting of the "it's because he is so smart" explanation until he got into school and the gap between what he seemed able to perform, and what he was able to perform, glared at us. Many would have remained unconcerned, and we got lots of "don't worries," but I saw the frustration killing his spirit, and that is why I pressed on. A physical co-morbed, disgraphia/hypotonia/hypermobility, ended up driving the process.

We got a school use label of AS when my son was 7 and I think it saved his life, in a way. Emotionally.

I was happy to read your story and see none of the driving issues we faced. If it stays that way, maybe you don't need to ever know. Labels, after all, only have value if they get you something.

first, hello to the pacific nw! i lived in idaho or washington nearly my whole life. we moved here to michigan 4 yrs ago, and i miss living in the pnw.

a lot of the things you describe can often be attributed to autism. even if your son isnt specifically diagnosable, meaning he doesnt have traits in the right combinations, he could still have some of the traits or even have enough to qualify as pdd-nos. keep in mind that aspergers generally isnt diagnosed as early as 2, because the as traits usually show up later when social interactions are more typically developed. classic autism is diagnosed earlier because it deals more with basic developmental skills such as speech, but an aspergers child can go undiagnosed for longer. just because your son was not diagnosed at 2 doesnt mean he wouldnt be diagnosed now at 11.

my oldest showed some signs of being different from about 10 months on. at first it was mainly sensory issues. he couldnt sit on grass, even on a thick comforter. he would balance on his rump and one foot, holding the other foot up in the air and just cry. he couldnt play in the sandbox at the park, the second he got sand on his hands he was coming to me crying to wipe it off. by 2 he had other things going on, rigidity in his thinking, couldnt accept change. he is very socially oriented, but has a hard time developing friendships. he also had a profound speech impairment to the point that at 5 he was completely unintelligible, no one except his parents could understand him at all. his receptive language was fine, and he had language and used it, it just wasnt understood due to severe articulation issues. he wasnt diagnosed until age 14 within the school district as generic asd, and hasnt been diagnosed medically altho if he was, he would end up pdd-nos/atypical as his traits dont fall with the correct numbers in the correct categories for as or ad.

my youngest came home from the hospital at 6 days old after being born 5 weeks premature, and there were signs at that time that he was different. first thing we noticed were again sensory issues, he was unable to sleep if not in contact with another person. if laid in his bassinet he would whimper and fuss and wiggle, the only way he could actually sleep was lying against someone. he will be 6 in another month, and still sleeps with us, and has to be against one of us to go to sleep. by 5 months there were many more signs; he didnt smile hardly at all, he had an intense stare. he was also very tactile, he was nursing and as soon as he developed a pincher grasp, my breasts were covered in scabs from him pinching and rolling his fingernails together. if you removed his hand or put your finger in between his, he would stop nursing and cry until you let him pinch again. he didnt point at objects, lined toys up instead of playing with them. his speech was very limited, altho he had a few words by 2 yrs and a few phrases by 3 yrs, but he actually refused to use them, even saying "no" when you would ask him to say things or ask for things in words. he also never played or talked with other children outside his brothers, he tries not to even look at other kids his age. we determined for ourselves that he was asd while waiting for his formal diagnosis which came at 4 yrs old, he has autistic disorder (classic/kanner's autism).

all of my kiddos are identified as gifted, which does make it harder sometimes to get someone to take you seriously when you ask for help. these kids are called twice exceptional, or 2e, meaning they are both gifted and learning disabled; this combination is being recognized more and more these days, but there is still a lot of resistance to getting the appropriate programming for both sides of the coin. and it goes both ways, you can get resistance getting help for the gifted, and resistance getting gifted programming for the disabled.

even if your son isnt asd, even if he is "just gifted" and is socially awkward because of that, he can STILL benefit from special education services. but you have to request an evaluation be done and they have to find that there is an existing issue to get those services through the school. the IDEA laws state that kids are eligible for special education not just in the case of academic needs, but also those who have developmental delays in physical development, cognitive development, communication development, social or emotional development, or adaptive development. even a profoundly gifted student who is academically advanced can get help for these other areas. the school can have a speech-language pathologist test for pragmatic language skills (conversational speech), occupational therapist for sensory integration issues, etc. many schools have peer programs to help develop social skills. your ultimate goal should be to get whatever it takes to allow your child to reach his potential.

My daughter was also always a bit different but I was not completely 100% confident in the as diagnosis until around age 7. She had the diagnosis before then but I was always unsure, questioning whether it was correct. I don't have the questioning anymore, though and she is 8 1/2. I think when you see major differences that don't level out with same aged peers you know the diagnosis is accurate.

I found out when my son was diagnosed, at age 5 1/2. I sought the diagnosis on the advice of his school. He had difficulty when he transitioned into kindergarten (he was cared for in my home for his first 3 1/2 years of life, and then attended daycare only part time for the exposure to peers, so this was his first full time experience of structured "school"). Specifically, he would lash out violently against other kids "out of the blue", and was seemingly underperforming academically, specifically in very poor writing/drawing skills. He also exhibited behaviors like rocking/hand flapping at school, and had some social issues, especially around the inability to understand/cope when anyone broke a rule or failed to follow the conflict resolution/social skills curriculum taught in class. The diagnosis made sense of all these "new" issues (and they have mostly gone away with the implementation of the right accommodations and services, other than the handwriting, which, while better now, will probably be happily put aside for typing when my son is a bit older and better at typing...)

The difficulties with transitions of your son sound like they could be AS, and don't sound related to his giftedness. (Unlike his lack of common interests with classmates, which might or might not be). I would have to say that at age 2-3 I do not think anyone would have diagnosed my AS son either. Usually at that age the "autistic" traits being looked for are language and developmental delays/regression, traits which I would guess your profoundly gifted son also lacked.

this is a good question, and makes me really sad to think about.

I first thought he might be autistic when he didn't talk at two years old. I had worked with some autistic children (babysitting in college) and was concerned about his reluctance to play (liked to just sit and watch), liked to walk on tiptoes, liked to line things up, but mostly about his not talking. He received speech services through the ECI program and by the time he was three he was caught up to the other children. I didn't think anything about it again, but he continued to have problems with being "babyish" "clingy" and crying all the time through preschool. (this is how the teachers/directors described him). I did know that he was more sensitive, had a slow to warm temperament, was very very smart (he asked science questions that showed understanding better than the middle school student I taught and could do math like he saw it in his head). In kindergarden, his teacher recommended him to be tested for GT. She stated that in 10 years, she had never recommended a child, because she believed it you could tell better after first grade. She said he was "classically gifted." He continued to have problems with crying at school all the time and for hours at a time. The school saw him as having asynchronous development as a gifted student. In other words, his ability to think about things far outshone his ability to emotionally cope with them. (he would be upset about others following the rules, natural disasters, not being able to make/do what he could visualize, et cetera) The school basically glossed over how much he was crying in school. In 2nd, 3rd, and 4th grade, he attended social skills group. At the end of third grade, something changed, and he started being more oppositional. He would refuse to go into the classroom or leave the classroom. He would lash out at other children, hit them or throw things at them. He would throw his books or a pencil or knock his chair over. Then in fourth grade, the principal recommended he be tested for special education because of his anxiety. Thats when we really found out how badly he was struggling at school. He had meltdowns at home about once a month, and they ended quickly. He is quirky, but then so is his dad, mom and sister. I like to say that he fits well in our family. However, when the results of testing came out, we found out he was spending 60-80% of every day crying or arguing or off task because he had shutdown. To top it all off, I am in school to be a psychologist. I should know these things, but I didn't see them or maybe just didn't want to see them. Shame on me. At the same time the school was testing my son, I was learning to test children for psychological problems myself. I knew what tests needed to be done, and I knew what the results meant. So, although the school wanted to deny he has Aspergers (they just call it anxiety), I could see from the results that he absolutely does have Aspergers. So to answer your question about when did I know. My heart knew that my child was unique by the time he was 2 years old, but we are still working on an "official" diagnosis at age 10 (11 in January).