Q For parents who's kids were dx 5yrs plus

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For parents who got a dx for their child after the age of 5.


What behaviours lead you to getting an assessment done?

Did you notice yourself that something was different or was it someone else who pointed it out ie teacher, friend?

Did your child's ASD traits become more pronounced when they started school and just went under the radar prior to this?


Thanking you in Advance

My son was in a preschool for children with developmental delays. The school wanted him evaluated. I didn't recognize what they were seeing because he was just like me as a child. I thought he had just inherited my personality. They were seeing lack of interaction with the other kids. When he was much younger, if another kid approached him he would go into a fetal position and wail.

My son was always a bit quirky, but we never considered that problematic - we just adjusted to his needs as we adjusted to the needs of all the children in the family. He needed a bit more (and different) of a warning when we were going to be leaving the house, so he got it. Power struggles needed to be avoided, so we avoided them. He was bright, funny, sweet, and really not difficult as long as we didn't do anything that triggered one of his "problem" areas - but most kids have their little quirks, so we didn't think much of it. His kindergarten and first grade teachers accommodated his quirkiness nicely, and appreciated his intelligence and his off-beat sense of humor. His second grade teacher, despite my explanation of his needs, decided in the middle of the year, to show him "who was boss." This created a serious problem, resulting in him hiding under the desk, and when seriously stressed, throwing desks over and throwing things. Oddly enough, , school "suggested" that I have him evaluated. I refrained from suggesting that they have their sadistic teacher evaluated, did as they asked, and discovered that my son had Asperger's. It explained a lot, but changed nothing.

As he has gotten older, his Aspie traits have become more pronounced, particularly since his peers have become so much more socially adept and he has not been particularly interested in doing the same. He has a few friends and seems quite content with that. He is currently in a school for "neurologically different" students, and it has made a world of difference for him - his anxiety is lower than it has been in years. He is happy and learning well.

Thanks for your posts

Aimless; Were they looking only for lack of interaction at that point?

My DS seem's to interact with the kids at pre school atm.. But in other situations ie visiting friends ..there are certain personality types that he cannot handle (loud in your space type kids) and sometimes he screams at them and will shy away if they try to invite him to play... other wise queit kids he is attracted to play with.

Jat; I understand how you put it down to personality etc. I'm positive my Son would have gone undiagnosed until he started school at least if I hadnt of sought advice for him screaming so much at his sister crying and his language delay. I put his behaviours down to just being fussy and an emotional being I found it hard too as he was my first child and I didnt know any different!

2precioussouls wrote:

No, he also wasn't talking up to speed and had extreme sensory sensitivity.

My son was so much like his older brother, that I didn't think anything of his quirks. His language was advanced, as were his reading, math, and other school readiness skills, except for writing. He was slightly "delayed" socially, but his brother had been cautious socially as well, so he just seemed a bit more so. Also, everyone (doctor, pre-school teachers, family, friends ...) said that kids can't develop everything at an advanced level. If they walk early, they sometimes speak a bit late. If they walk and talk early (as mine did), they might socialize a bit late. Mine was talking, walking, recognizing letters & numbers, manipulating legos, etc., at a very early age - everyone said if he was doing all that, he couldn't also be paying attention to kids, and he would do that when he was ready. It made sense ... it was just wrong.

1) For us, getting an assessment was driven by a need to get a special education qualifier, which was driven by my son's inability to communicate in writing at the level required for K and 1st. The gap between perceived intelligence and the ability to produce at school was very large.

2) Prior to that, we had always known my son was different, he was very much more high maintenance than the average toddler, but because he was so interactive and curious, we were usually told that he seemed overwhelmingly gifted, and that such gifted children could often be just as he was. The preschool was sure something was wrong, and referred us to family counseling, but after a year of that and observations by two traveling specialist groups we were told that he was a wonderful child, a "magic" child was the term they used, and that the preschool was the problem, not him (which it was, as well, but that is another story). Basically, most everyone in those early years totally fell in love with him and had us believing he was destined for amazing things. Which made it quite a shock when he got to elementary school and could not do the work.

3) The ASD does become more pronounced over time simply because most children learn social skills over time, and are able to use them by the time school starts. As toddlers, our kids aren't THAT different, especially if they are high functioning or sensory seekers in the way of social contact (as my son was). No toddler has great social skills; they are still developing all that. But our kids don't develop it; they kind of stay the way they are when it comes to certain things. At 12, my son still enjoys baby talk and cuddling, both of which are things NT kids do but outgrow long before age 12. All 2 year olds throw tantrums. But to throw them frequently at 9? And so on. I've often said that I think it would have been impossible to diagnose my son before age 5, and in many ways I am glad of that. We had no pressure for early intervention or any of it; we were just busy trying to figure him out and respond to his needs, and we were mostly quite successful at that.

Sensory issues (mostly with touch, bright lights, noise)

Not interacting with his peers age-appropriately.

Not understanding facial expressions.

Because of the difficulties above, he would have meltdowns and difficulties calming down age-appropriately.

HOWEVER ~ keep in mind that each diagnosis is not the same as far as "symptoms." There are two boys in my son's grade that have Asperger's and their difficulties and areas of expertise vary greatly and manifest in different ways. But it's the areas of social skills, sensory issues, and theory of mind that are the most prominent for them to be "categorized" together (for lack of a better word).

Thanks for your replies

Do you think its pretty common in the high functioning kids that it takes a trained eye to pick up ASD's And that it's not so obvious to a lot of people who know little about autism?

Last edited by 2PreciousSouls on 26 Aug 2009, 11:26 pm, edited 1 time in total.

Yes, I do.

My son wasnt diagnosed until he was 19 (he is 20 now).

For years we had thought there was something wrong but he just seemed to be different and because he was average to above average at school and coped socially, nothing was said by the teachers or any other professionals. But the signs were there - like the time he had to give a speech in front of his classmates - the teacher and I gave up trying to make him do it - he was like a brick wall - he wasnt going to do it. And he is still like that now with his values and morals - nobody can change his mind. As a teenager it was great because peer pressure just wasnt a worry. So there are some definite benefits to having an Aspie child.

Yes, he had difficulty with his fine motor skills co-ordination (to this day he still cannot tie his shoelaces and he has great difficulty walking in backless shoes, scuffs and jandal - I think they are called flip flops(?) in America). He didnt do well in team sports and would always back away from playing rugby at lunchtimes with the other kids etc but he was a fantastic runner.

Now that we know better, we see that his standing back in social situations was more than just shyness (and when there were too many strangers or people around he would disappear to a quiet place or demand to go home). One of his friends lived just around the corner from us and I remember Tanya (Dale's mum) telling me one day that she always knew when it would get too much for Shea because he would just disappear.

And as for his constant rocking - well everyone just said it made him unique and that was it. God help any kid who was nasty to him - his friends and brother and sister and their friends all dealt with that themselves!! I think that big support group of peers also made a difference because Shea does really well in social situations.

It was Shea's inability to cope with a job (his co-ordination and inability to hurry or do more than one task at a time) really prompted me to take things further after talking things over with a friend whose sister had recently been diagnosed and comparing Lauren and Shea.

Im still putting things together with Shea (especially after finding this site). He hates shopping malls and I realise now that its the sensory overload that does his head in. He doesnt like going night clubbing either for the same reason but he has never been able to explain exactly why he doesnt like them. Now I know.

He is also the most sensitive and caring out of my 3, he has a wonderful dry sense of humour, he is always positive and I am so thankful he is in our lives.

even though my mom has AS I never really considered it for my son... he was in an emergent curriculum preschool where I also work and things were always flexible for him. I knew he really liked singing to himself and he definitely has sensory issues (clothing, temperature of food and bath, smells) but I just figured he is a sensitive guy. In kindergarten he learned to read super fast and rocked the math curriculum, while his handwriting went from giant block letters of his name strewn around the page to almost unrecognizable scratches. It seems like the handwriting thing is a big indicator for many kids for whom verbal skills came early or at the expected time sot hey didn't get a diagnosis in preschool, it's like the second wave. By the middle of the year his teacher was seriously concerned, he had started spinning on the rug during story time and would sing loudly to himself while the teacher was talking to the class. What I figured out (duh) was that in his preschool there had been space and time for him to do his comfort activities so he had been self-regulating this whole time, now that he didn't have that time and space for his own needs he was totally freaking out. We also discovered that what we always thought was his cute floppy way of moving around is actually a lack of balance and muscle tone!! ! I think our kids are often just normal to us, and it's not until we put them into the stressful environment of school and they're expected to conform that alot of this stuff becomes obvious. I am still torn between wanting him to be however he needs ot be and understanding that he needs to be able to cope somewhat with the outside world as he gets older without needing everything catered to him. We are still working on an IEP for first grade and I don't know what it will look like, I'm hoping we can keep him in school since it's an arts magnet and the place is great but we'll see if we can get his stress level down. I wish I had caught it sooner, but I am also grateful that his teacher talked to me and we're getting on it now before he develops an irreversible aversion to school.

It wasn't us as parents that raised the concern, it whas a combination of the rehab team and school noticing that it was definitely more than AD/HD. Frankly, before that I had never heard of Asperger nor HFA. Then my now exwife said after my youngest got diagnosed and my mid son also she just said "oh my god. Yo're an aspie too!".

With each new teacher, we've also let them loose for a day without Concerta for their AD/HD and was told to "Please, don't do that again!". But it was nessecary to let them "loose" because they also have physical and vocal tics we told them about, but also was nessecary for them to experience "first hand".

(about me being AS, it hasn't bothered me for 39 years, I know who I am but I have a long history of depression since "forever" and three suicidal attempts <10y that now begin to make sense. I'm also currently mentioned AS in my medical records without a diagnose).

Nobody says it's easy with parenting. But with a good network of friends, and we being two parents not giving up, we've been steadily encouraged and praised for our stubbornness.

I was never actually DX'd, because it was BEFORE AS was a diagnosis, but the SCHOOL notified my parents that I, SUPRISE, wasn't socializing properly with the other kids. Apparently these problems start with others around the same time as they did with me, about 6. That IS, in the US, the first grade, and when kids are given more freedom, etc...

Thank you all for your replies. Very helpful to read.

I can see how easily my son could have gone under the radar if it had not been for other circumstances leading to the diagnosis... and why the untrained eye cant "see" it... I guess that explains why a few family members just pass our Son off as being naughty... sadly even after the dx... very hard when they can't accept it.

Thanks for the heads up about things being more obvious when they start school, it's good to have an idea regards to what we are up against later.

Thanks again for your replies