change in autistic "symptoms" over time | Autism PDD
thank you for the links to peer reviewed academic journal articles. i need
the science behind the statements! perfect!
LWOW, these are really interesting links! Thank you for sharing them
The first linked article mentioned [quote]echolalia during early childhood may be replaced by verbal literalism
and difficulty with verbal humor during later childhood or adolescence[/quote] which is exactly what happened with my son! I wish someone had said to me that he wouldn't speak by repeating TV commercials for the rest of his life, as I feared. It will be nice for future parents to get a prognosis that has these details, rather than be sent on their way without any clue of what the future hold for the children. I also liked the second article which I think will be an amazing breakthrough for parents and caregivers. There will be actual evidence to suggest that their children's autistic symptoms will decrease (or "outwardly expressed", anyway) for those who are non-MR. My son followed this course and I wish I had known that right away! It sounds like there will be a much better experience for parents in the future that will be able to understand their child's prognosis, rather than play the guessing game about what kind of level your child will be at. But I was a little confused about the three criteria in the second article. What exactly are the three parameters - age, MR status, and initial CARS score?
An IQ of 140 or 150 is considered a genious level IQ, so it's funny that you say that he is not overly gifted for his age. Only a fraction of a single percentage of the population have IQs in that range. And while autistic people can have high IQs, having a high IQ is not an indication of a disorder, though it is common that people with high IQs have social 'quirks' for a variety of reasons. Most (not all) children with autism do not have high IQs (if assessed with traditional IQ tests), though this has much to do with the nature of the tests, but in any case, a high IQ would probably be counterindicative of an autistic disorder assuming a traditional, verbal IQ test.
It is possible to be quirky and not autistic, and most quirky people are not autistic. Remember, in order to be considered 'disordered', these quirks must be impacting the persons life in a negative way. Otherwise, they are just quirks :)
In order to be diagnosably autistic, one must have qualitative impairments in three domains: language, social skills, and imagination. Without qualitative impairment - impairment that is affecting the person's ability to succeed to his/her potential - then a diagnosis is not in order.
If you would like to get a measure of whether or not you need to be concerned, you might want to fill out this checklist, and it will give you some idea as to wether or not your concerns are founded:
http://www.childbrain.com/pddassess.html
You have to make adjustments for the age of your child; ie - most 2.5 year olds will not recognize sarcasm or 'get' jokes, so just keep in mind what is typical for their age when filling out the questionaire.
Woodsman25 and Tony's mom, I was very interested in what you had to say. Tony's mom, I'm so happy to hear that your boy is doing well. We have only really started IBI recently, however without much intervention our son has made great improvements. Good to hear that more is possible and quite likely.
Woodsman25 I would love to hear more about yourself as a boy. I think I understand my little guy pretty well, but any additional insight would be very welcome.
Fred, you sound very well researched. Your opinion is also enjoyed.
Thank you all for sharing.
Okay, I tried to read the links, but really couldn't get anything out of them.
Fred, my son was dx with Pdd-Nos recently, his CARS score was 30, he's almost 3, and the school says his IQ is 75. So, if I'm reading your post right, there's a good possiblility he won't be considered on the spectrum in several years from now? Forgive me if I'm being dense, but if this is true, I'm very happy to hear it. I've been fearing that he would get worse over time rather than better, even with therapies.
Thanks for posting this!
Marilyn
MOm of Jay, age 3, pdd-nos plus 3 more
Having grown up with people who have this disorder (when looking back), seems very strange. I always thought it was just their personalities. AS was more normal in my daily life than NT (but this is hindsight). I have many questions regarding this topic. I always used to think wow these people are so lucky. They are so intelligent. Everyone looked up to them for being so smart. My brother translates 5 different languages, many of my cousins graduated high school at age 16. I mean they are highly intelligent. Now I am faced with my son having the same issues. He is not overly gifted for his age, but gifted all the same. Just from the experience of dealing with my family, I would say his IQ is between 140 and 150. He is following their same patterns.
His disorder (if he has one) is very hard to determine. He is not overly one way or the other. He does not have ADHD not is he lethargic. He does not have food allergies. He can go to public places and have a great time. He likes kids his own age (hyper kids get on his nerves). He just is not always social nor does he always respond, but he always knows what is being said and his vocabulary is amazing. He just doesn't always use social language. So, I come to the question, again having been around this syndrom my entire life, are we labeling personalities as in my son's case. I am not saying everyone. I just mean what is considered PDD or very mild issues. Everyone I know who has this disorder has taught themselves to be social or to deal with it just like any person has a problem to deal with. However, we don't label social people. I don't know it seems a little bit much for children who are in my son's case.
Well, yes and no. Most folks agree that if a child is autistic, they are always autistic. What isn't often mentioned is that autistic people, in general, learn to behave less autistic as the grow older and they 'catch up' to some degree with their delays (i.e., a kid who does not talk as well as his peers at three may be superficially indistinguishable from them at age 10). It's been my observation that those who are promoting specific autism therapies and treatments tend to omit this sort of information, leading parents to attribute, imo, too much of their child's "progress" to the therapy, and not enough to simple maturity and traditional learning. So, yes, over the span of many years, it appears to be a reasonable assumption that many of our kids will gain enough skills so that they will not be diagnosable by the traditional instruments.
This does not mean that they are not autistic anymore, or "cured", or "normal" simply that they'be adapted and conformed (regressed to the mean?) and no longer present the same set of symptoms and impairments that led to their diagnosis in the first place.
30 is the cutoff for autistic disorder, too. My daughters also have a 30 on the CARS. The CARS does not detect the other PDDs if they are of lesser severity, like is the case many times with Asperger's syndrome or PDD-NOS, so I think, for kids like ours, they will tend to 'move up the spectrum', out of the range of autistic disorder, perhaps PDD-NOS, and maybe, eventually, off of the spectrum altogether, at least according to the diagnostic scales.
I believe, if assessed today and if their developmental history were unknown, my daughters would receieve a PDD-NOS or Asperger's diagnosis, because their constrained interest/repetetive behavior/lack of imagination is getting more subtle and their language delay is less pronounced than it was.
15-30 Non Autistic
30-37 Mildly-Moderately Autistic
37-60 Severely Autistic
Thanks for the info Fred. I didn't mean to say that an IQ between 140 and 150 is not gifted. I was comparing this to some of the other children that I know with the asperger's syndrome. One of my friend's children who is 4 is working with numbers in the trillion and quadrillion range. Thanks for the rating link. As I was going through it, I realize that my son has only one thing that is severe and maybe two mild or moderate level rates but everything else is no. I think that maybe he is just eccentric and in that case i am not going to worry about it. [quote]It's been my observation that those who are promoting specific autism therapies and treatments tend to omit this sort of information, leading parents to attribute, imo, too much of their child's "progress" to the therapy, and not enough to simple maturity and traditional learning.[/quote]VERY WELL SAID!
I agree with this 100%. I happen to think this MAY be the case with the GFCF, probiotics, Kirkman vitamins, ect. JMO.
EDIT: [quote]conformed (regressed to the mean?)[/quote] Regressed to the mean
Great link! I checked out the Mensa site - not sure I'd want to join even if I passed! I think I'm too social
I took the MENSA workout on-line and it told me I should take the actual test as I have an excellent change of getting in. Do they just tell that to everyone just to get the test fee? Yup - I need a life. I just sat at home on a Saturday night (4th of July weekend no less!) and took a MENSA test - yikes!I thought a score of 130 is needed for 'gifted'. I thought 'genuis', however, requires a score well over that?
This is inspired by the 'recovery' thread. It is important for many reasons for parents to realize that most autistic children do "improve" over time and many children's autistic "symptoms" will, indeed, fade with time and maturity. This is not to suggest that we do not provide therapies to help our children, only that one needs to be mindful that change and progress should be expected regardless of therapies or lack thereof. This is important for many reasons, including recent observations that I've made of web-sites promoting certain therapies implying that autism is static, or in one case, a degenerative condition (yes, I know, in some cases it, but not in the general case, and the studies model does include static cases) - unless the specific therapies are employed, of course.
Here's the triaxial model for predicting the change in the expression of autistic symptoms over time that we've seen posted here before. The key factors in this model are "severity" of autistic symptoms are at the time of diagnosis, IQ, and age/time.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db =pubmed&dopt=Abstract&list_uids=10799629
The author went on to conduct another study with a collegue, apparently, to confirm his model.
This newer (2005) study tests a model that predicts the change in 'autistic symptoms' (as defined by the CARS) over time. In a nutshell, it predicts that for non-MR autistic kids, the outward expression of their autism decreases over time (again, as judged by the CARS).
It would appear that all of the non-MR kids in the study that tested close to the mean CARS score would no longer qualify for the diagnosis via CARS after a few years. fyi - the CARS does not detect other PDDs, just autistic disorder. Kids who were diagnosed with other PDDs (Aspies and PDD-NOS kids in the study set) scored below the cutoff of 30 for autistic disorder in a study that evaluated the CARS (don't have a cite for that one).
By this model, the girls should no longer meet the criteria for 'autistic disorder' (CARS cutoff 30) :) given their initial age of 48 months and initial CARS score of 30 (and using the regression detected by this study for their mean CARS and applying it to the girls initial score).
Be interesting to see if they use the CARS in their review.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db =pubmed&dopt=Abstract&list_uids=15995041
This model, if replicated in a prospective, population-based sample that is controlled for treatment modalities, will enhance our ability to offer a prognosis for the child with ASD and will provide a benchmark against which to judge the putative benefits of various treatments for ASD. Our model may also be useful in etiologic and epidemiologic studies of ASD, because different causes of ASD are likely to follow different developmental trajectories along these 3 parameters.
Edited to add another study, but no full text for this one, but an interesting abstract.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db =pubmed&dopt=Abstract&list_uids=7745522
Hi Fred,
I did not read the links, but am just responding to the topic title and your overall post. I am speaking as a mom of a "relatively" older child (Tony is now 12-1/2), and someone who for various reasons did not have many options for interventions.
My observation is that when parents apply a good measure of common sense and following your gut instincts, engaging your child in ways most comfortable and natural to your family and home, MOST will see a lot of changes in autistic "symptoms" over time. In my opinion, rigidity begets rigidity... and tension begets tension.... and so on.
And of course, our kids naturally growing into teens and young adults (and all the wonderful hormonal changes that go along with it) bring changes as well. What seems to be most difficult to get through are the negative changes... and how to help our kids get through the rough spots along the way.
Patience and temperance are quite high on my wish list!
Mary
fred, u have awsome posts. its too bad my parents did not and still dont have the kind of understanding that u do to this day my parents beleive I along with others have 'juvinal autism' and sincerely beleive that one can be autistic in childhood then just be normal once maturity sets in. They honestly beleive that once I became a teen I was no longer HFA and from that point on they expected me to be completly normal. It was great to be treated normal, tho sometimes I messed up and rather then try and talk to me and together try and understand eachother better I would get punished or in rair cases hit.I know things are different now, but latly I have finally after about a decade of not talking about it to my parents (thankx to being on here) I got the strength to do so and while my mom is interested on my perspective of the many years of how things were handeled (shes shocked at some things I said or why I did some things I did) my dad would not listen and after about a minute of trying to explain some things he walked away, obviously not interested in hearing that once someone is on the spectrum, always on the spectrum and so he beleives my acts were the result of not thinking and being dumb.
Im glad u have far more understanding then mine did and still to a degree do, and as a result your kids may do better in life then I have, with more support and less family friction, although I feel I did very well for someone my age, even NT kids and I still love my parents.
I look forward to all your future posts, as well as others who are on here and informed.
Just finished it - he got between a 29-30. So not much change! But some of the questions were hard to score - I don't know....
Sunflowers - I think a 120 is needed for gifted in our area. Over 140 is considered genius level from what I understand. I don't qualify - missed it by a few points!
http://www.wilderdom.com/intelligence/IQWhatScoresMean.html
I don't think a high IQ means you can't be forgetful or that you are necessarily an A+ student or that you can't do stupid things once in a while. I think IQ tests measure the ability to understand a concept. It doesn't measure knowledge and doesn't always correlate with stellar grades.I thought IQ tests also showed what areas you might be stronger in.
I think one can have some healthy level of skepticism of IQ scores and what they mean without discarding IQ tests altogether. A high IQ score MAY be an indicator of intelligence but that doesn't mean the reverse is also true - the reverse being a lower IQ score means a child is not bright.
I have never had any kind of IQ test. But my 3 yo was tested and the results were used to explain some of my son's behavior that might have previously and erroneously been labeled ASD. So in his case, they were useful in some regard.
Oh, Snoops, Snoops...what are we going to do with you? Listen, at my goofiest, i bought these teeny tiny little rubber skeletons at the party store right before Halloween one year. But they weren't for the holiday.
My boys had just seen Pirates of the Caribbean for the first time, and I used multi colored permanent markers to "paint" on pants, vests, bandanas, goatees, boots, etc onto these little suckers. We have a couple toy pirate ships with little pirate dolls, and I thought the skeletons wearing clothing might inspire some imaginative play for Cole.
So yes, sweet girl, you are pathetic, but you have lots of company!
BTW, IMHO those IQ standards are poppycock. My youngest tested in the 140's at age 3 on a 3 component Woodcock Johnson, and yours truly tests even higher than that. I can be a huge twit, forget myriad things, etc...honestly, I consider myself a B+ when it comes to smarts. That's it. I think the tests measure one small prism of intelligence, max, and some people just test well. If your child doesn't test well at all, do NOT allow yourself to believe he or she is not bright! The test just wasn't bright enough to capture their spark.
Fred - thanks for posting these hopeful pieces of information!
You know, I re-read my post and it looks like I am against IQ tests. Actually, I'm not. I was against them BEFORE he started kindergarten - because of the school district we were in and because I thought our old school district would use it to dis-qualify him from services (I had heard of this happening).
I honestly don't know how well he would cooperate with an IQ test and he would need a non-verbal one I think - not one of the typical ones given. I think it would be good to know and to know what his strengths are and what he needs to work on.
Anyway, just thought I should clear that up!
My son has never had his IQ tested - I would never let them. First, I was worried he would test above average and they would say something like, "well, obviously his issues aren't impacting his academic performance" since they have no other ways to measure academic performance in pre-school. I ALSO worried that they would use an inappropriate IQ test and he would do poorly and thus be scored way below average (I have heard of that happening). My gut instinct is that my ds is very bright but that he won't always perform that way on standardized tests. We had a reading evaluation done on ds because of concern about his reading ability (I know he hasn't entered kindergarten yet, but he does have issues already and if you catch them early, he will hopefully be able to get intervention and catch up!). The person who did the eval said that he definitely had some issues - but most of them were because he doesn't want to try things that he isn't POSITIVE he can do. Makes it hard to try anything new! She also said he was one of the brightest kids she had ever tested. And she said she's been doing the testing for 17 years. She also said that might not show up on an IQ test, but his imagination and ability to pull concepts together was phenomenal. She told me his scores on the reading eval did not accurately reflect what he could do - only what he was willing to do that day (and he was not willing to do a LOT of the test). But, she said that having such a fear of failing is something we need to work on - so having that pointed out to me was probably worth the 0 I paid for the evaluation in and of itself. We started trying to work on that right away!
We already knew that he has an incredible ability to pull concepts together because he will frequently make comments or ask questions that stun both my dh and I. And frequently, we don't know the answers (my dh has a Ph.D. and I have my masters degree - so we're not TOTALLY dumb!). And he asks these AMAZING philosophical questions that just blow me away. I wish I could think of some, but I can't off the top of my head. I've almost gotten used to him asking these type of questions - I probably should start writing them down.
Anyway, I don't put a whole lot of stock in standardized IQ tests - especially with kids on the spectrum. Rather, I think it is better to look at what their strengths are (which IQ tests usually do show) and if there are areas they need to work on - well, that's helpful too.
I guess I know my son best and the only thing I can do is help him reach his potential to the best of his (and my) ability! Just my thoughts on IQ - but for me personally, I always thought it was "fun" to try to beat the top scores on tests like that. Again, I have always needed a life!
P.S. Glad to know I'm not the only one who needs a life! That's a good point snoopywoman.
The neuropsych who ran the test said when parents insist to a teacher or a school that their child is very smart and has special needs in this regard, it often falls on deaf ears. She said when parents claim their child is bright, it means next to nothing to the school because apparently lots of parents think their children are smart! :)
But the evaluation (whether IQ, psychological, etc...) pinpoints strengths and weaknesses of a child and may support what the parents have been saying all along.
My son also avoids tasks if he thinks he'll fail in it. This is something we need to work on too.
Also when my son is understimulated, he can start acting goofy and silly and can become disobedient and sometimes even destructive (throwing things across the room). Keep him very stimulated, however, and you get his undivided attention for a very long period of time. So we worried that if the school didn't try to keep him stimulated enough he would become goofy and disobedient.
Walking in there and saying 'our son is very smart, he needs appropriate material to keep him stimulated otherwise he'll wreak havoc here' will probably mean nothing to the teacher or school. My son is fairly shy also and so initially one would never be able to say whether he is bright or not. He won't say much for the first several times of meeting someone.
But I do think IQ tests can be misused by some parents who use it for bragging rights.
IQ is very private information to be used to help our children, but sometimes I put it right up there with those bumper stickers that read, "My child is an honor student at Westlake elementary school."
Copyright Autism-PDD.net