Congratulations son, your in the bottom 0.1th percentile

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I guess that's an understandable sentiment, though I'm sure can't quite understand how it is to be a parent. It just reminded me of hearing that autistic kids tend to have developmental lurches, and can even get developmental steps out of order, and other counter-intuitive things.

Nostromo
I read an article last year about a family and their autistic son, that stuck with me. The parents were told at a very young age that he should be put into a home as he would never improve They both worked steadily and very hard with him for years and he is now at college. His father said "never let anyone limit your child's horizon"

I really feel your pain right now but hard work and love can work wonders. I hope that you get all the support and interventions you need right now.
I wish you and your beautiful son the very best - don't let a score limit his horizon.

x

Well he's hardly alone, though the figures are worded in such a way as to make it seem like he is. My daugher is right there with him, in the realm of numbers that are always preceded by a "<". It's depressing as anything. Mentally I re-word it to myself as "left on the bell curve" rather than "bottom of the functioning levels" because "left" just sounds better. Those abysmal numbers are how I found WP in the first place. Googling such things led me to here because there is always some thread where people are comparing each other's stats and disicussing functioning levels.

I'm guessing that whoever did the testing also gave you a grim prognosis for the future because they don't want to give "false hope". While I'm not deluded enough to think that an Einsteinian future is inevitable, there are a lot of inspiring stories tucked away in the threads. There are a lot of depressing crash and burn stories too and I see those as filled with lessons we can use as parents rather than grim prognosis.

For the record, my daughter- while still behind her age peers (and thus not able to shed the "<" prefix)- is far beyond where she was when they did the testing. She would seem to make no progress at all and then suddenly a skill would snap into place.

As far as "saving hard" goes, I recommend having a lawyer draw up your will with a Special Needs Trust Fund if you haven't already. I'm not sure exactly how it works, but the kid winds up with more actual money than with a regular trust fund.

It certainly seems to be the assumption of the people who do this testing. They shared this assumption with me when my daughter was tested and got similar results- in the most tactful way possible and with a box of kleenex.

I've had several intervening years to ponder on how they are sticking to this assumption.

1)It's completely true and the inspiring stories of progress posted here and elsewehere are outliers.

or

2)It's true for some people and those are the people who tend to get tested again and again and again as they work their way through school systems and residential care facilities. Those people who make developmental leaps will also leap out of certain programs and thus fall off the testing radar of the medical establishment, skewing the statistics.

It would take a longitudinal study to sort this out. I hope such a study does get done.

Definitely an unfounded assumption. The tests compare your autistic child to an NT child of the same age; and not only do autistic kids lag behind in some areas, they also have a different developmental trajectory.

They just don't develop in the same way that NT kids do... their learning curve is shaped differently.

I have a picture in my head to try to explain this so I'm just gonna pull up Paint instead of trying to use words here...


So if you look at the red line, that's normal NT development, the average of all those kids they use to norm the tests.
Green line is delayed (but otherwise NT) development.
Yellow line, gifted NT.
But there are many other possible developmental trajectories...
The purple line represents a kid whose natural development starts out pretty typical but eventually falls behind the developmental demands made of him by the environment. The purple is his norm; it's just that the NT average is increasing faster than his does, and he "falls behind".
The dark blue line shows a kid who starts out with slow development--these are the kids who are often obviously autistic to start with--but then "catches up", by learning very quickly. This learning style often involves teaching what seems like ineffectively for ages... only to have the kid just suddenly "get it". That's how he learns.
Light blue line represents a kid whose development has a different slope. Starts off looking like a gifted kid due to natural talent; but learns more slowly than his NT peers and eventually falls behind. Of course you could have the opposite--a kid who starts off looking delayed but learns more quickly.

Point being... you really can't judge an autistic kid by the NT average.
This isn't a perfect analogy of course because different people learn different ways on different skills--the same kid can have one kind of learning on one skill, another on another skill, be behind on one, ahead on the other... it's pretty tangled. Kids are just individuals.

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Last edited by huntedman on 18 Mar 2011, 8:11 pm, edited 1 time in total.

Never give up hope. My son and I are right there with you. At 4 yrs old, the testing they did showed him as borderline mentally ret*d which I knew was not the case. He is now almost 6, and he is learning to read. He can read very small books. If I spell a small word to him, he can tell me what it is. He is speaking in full sentences and now asking us questions and asking us what words mean. I don't think he is a genius or anything, but he is learning, and those tests had me on the verge of tears. I just think 4 yrs old is too young for those types of test. My son is still in a special needs classroom, but I am becoming more and more hopeful that he is going to be able to learn.

Now socially, that is another story. He still has no friends, and that just breaks my heart. But I want to encourage you. Please do not give up on your son, and NEVER underestimate the power of a mother or a father's love.......Hang in there!

I have a friend who didn't speak until he was 12 and is now completely conversational.

we did that exact test as well and came out with similar results. i think he could have done better but he does not like to co-operate with what others think he should be doing. he ended having to leave part way through because he was yelling at the psychologist and throwing things. she was very patient and kept trying to get him into it but when she brought him out i wasn't surprised. we had to come back and re-do some parts. still, he had just turned 5 at that point and tested between 7 months old and 2yrs 4mos. he is still behind and yes we were starting to think he was totally unteachable. he still can't spell his name and doesn't really write any letters. he doesn't remember the poems and songs that he learns in class. BUT they finally found something he's getting!! a year ago he could barely count to five. i tried so hard to get him to learn to count before he started school. every attempt was met with either crying or "2,1, 6. 2, 1, 6." he kept repeating those numbers. well now all of a sudden he starts doing math. math while he's playing, math at dinner. i was working on letters with all the kids yesterday and i look at his paper and it's all covered in binary. i asked him what it was he said something he saw on tv. I also have a nephew who is AS and he didn't start talking until he was 6 and at that age he was doing more of a baby talk type talking. now he is 11 and only slightly behind his peers. he is working on the same things in class as they are and passing most subjects, some with A's. he still has a hard time dealing with peers and crying when he gets picked on but he's come a long, long way and without much support other than from his speech therapist.

Just want to point out that now you have a starting point. It's like Dorothy and the Yellow Brick Road - she started out in completely bizarre chaos and ended up happy as a pig in mud. Now you can figure out what to do to help your son. Take it from me, even when I'm completely shocked by the results, it's so much better to be able to do something than to be stuck in limbo. And it is still early enough to get some great interventions. My son makes measurable progress - more than his peers - every 3 months. Do I think he'll completely catch up? Actually, I don't care, because he's a pretty cool kid just how he is right now.

Good luck!

I've given this some careful thought, and I've come to the conclusion

F*CK THEIR REPORT!! !

It doesn't help us, and it doesn't change anything, he's still a wonderful boy. I had a great day with him today.

Love this!

Good for you - Stay strong

THIS is the most important thing


(and I'm loving the attitude about the report but just can't get myself to quote the expression on a public message board )

I think this is the right attitude to have. The report is doing nothing but bring you down as it did me, and it is not helpful for your son, so I am glad that you have come to this conclusion! Hang in there!

nostromo, your son is beautiful. ive seen a few videos youve posted, and he is a joy to watch. in those videos, i see in him the same inner contentment that my youngest has, a simplicity of spirit that accepts the world as it is. james is a truly beautiful child.

when my middle son was born, i learned a very valuable lesson. he was 5 wks premature, had a punctured lung and respiratory distress syndrome, and was on a ventilator in a warmer for his first 12 days. we couldnt pick him up or hold him, he was covered with wires and sensors and tubes. after the first couple weeks, i came to rely on those machines, on the numbers and the beeps, to tell me how he was doing. i have never been the kind of parent to rely on outside sources like that, and when i realized what i was doing, it took me a while to regain trust for my own instincts.

it is so easy, especially with a sick or special needs child, to let those outside sources tell us how our children are doing. they are suppose to be the "experts", we are suppose to trust them. but doctors and therapists and reports and evaluations dont KNOW our children. WE do.

it was only a month ago that you went to his kindy class and talked about all the progress hes made. focus on that, that is the true measure of his functioning.

my youngest is not much older, he just turned 5 in the beginning of february, is very verbal, definitely an autie, and is generally considered high functioning altho we have never had specific functionality testing done. there are certain things you describe james doing that my son has NEVER done, nor do i see it happening anytime in the near future. things like holding another childs hand, looking them in the eye, and grinning. K will talk your ear off, but that basic human connection of hand holding, eye contact and smiling at another child is so far beyond what he is capable of. they each have their own individual strengths and weaknesses.