Is that true...? | Autism PDD

BTW -- I have seen autistic children gain speech as late as 7, but for the most part, how well a child speaks by 5 seems to predict how well he or she will speak as an adult.  That's been what I've seen with the dozens of autistic children I've known during the past 13 years.

I agree with above posters about the IQ language severity progress bit.  But here is what confused me in reading.  Doctor states that progress depends on severity and ability to acquire language, which means he probalby thinks the higher the IQ the better the chane at acquiring languae.  I don't agree with that.  But, lets's just say he is right.  Wouldn't using an IQ to determine progress mean we are looking at the severity of the disorder?  IQ's are what we use to decide "how severe" someone is in cognitive disabilities.  It just doesn't make sense to me that by using an IQ to determine progress is also the same thing as using severity to dertermine progress.

Which, like the above posters stated, we can't do.  No one can.  So clearly, your doctor was wrong in saying this. 

I can only relate this to my experience with Nicholas (now 16).

I have had him regularly tested on his IQ levels. I was told that an IQ level does not change very much unless there has been an illness, accident etc and it should almost never go up bu much.

Nicholas' testing had him at 3 evaluated as 'mentally disabled'. I was told not to look at mainstream schools for him.

Fast forward to 16 and you see him at the top of his class (still with speech difficulties etc). His evaluations come back now with him being in the top percentage of IQ levels.

I am a big believer in just 'going for it' Aim high!

Mysh

This doctor came up with a three axis graph to assist in prognosis, the axis being age, IQ, and atypicality:

http://pediatrics.aappublications.org/cgi/content/full/105/5 /e65

Seems like a pretty crude instrument, but the gist is, I guess, that kids with higher IQs and lower atypical features tend to, over time, lose some of their autistic symptoms;  the features fragment and fade over time.

Those with relatively lower IQs and higher levels of ASD features tend to have a relatively flat plot.

The narrative also implies that treatments don't really affect the prognosis

BTW - great story, Mysh - I agree.

(updated broken link)

This doctor came up with a three axis graph to assist in prognosis, the axis being age, IQ, and atypicality:

http://pediatrics.aappublications.org/cgi/content/full/105/5 /e65

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The link does not work. Coud you check it again.

Karolysgirl - wow...I just looked up Temple Grandin. What an inspiring woman..and an inventor (which sparks my hubbys interest)

Mysh

Thanks Gabu.  I think I might invest in some VB books to read about myself.  Also, how does one find out about the workshops about PECS?  The PECS website?

Sorry if I offended anyone.  My "DUH" was about the doctor stating the obvious -- IQ is a predictor of success or we wouldn't have been using it for nearly a hundred years. The doctor was not revealing new news by saying autistic kids' IQ scores are predictors of success.  MY IQ score is a predictor, YOUR IQ score is a predictor. That said, IQ scores on little, tiny kids are notoriously wrong, especially among ASD kids who are generally BAD test takers.  I've seen their IQ scores go up until they reach an age at which they can fully cooperate. Also, most ASD kids do WAY better at nonverbal IQ tests (not true for the general public).  Even those kids who have language.  That's because our kids tend to think in pictures, not in words.  Sometimes IQ score go down over time because the gap between a child and his same age peers widens.  I haven't seen that as much as the widening gap in adaptive scores, but I have seen it happen.  IQ scores are not like blood tests. They are NOT that accurate.  But they do seem to predict ACADEMIC success.  The truth is, the autistic kids I've known (many, many) DO do better the higher their IQ's. However, even those with above average IQ's do not do nearly as well as NT kids with the SAME IQ's.  That's because autism affects PROCESSING.  Think of it this way.  If a truckload of gold takes a well-maintained road to your house, you will be rich.  If the same truck of gold takes a road that is in disrepair and has tons of roadblocks, that gold most likely won't do you a bit of good.

[QUOTE=Nowwhat]I think the doctor was citing some recent studies out there that show that children who are not cognitively impaired and who have some language fair better with early intervention than those who are. [/QUOTE]

Yes I think this is what the Dr wanted to tell. But is that true?

PECS workshops:

http://www.pecs.com/workshop.php?workshop_id=9

i dont think you can conjoin speech with iq in all cases. great reference to temple grandin, or for that matter helen keller. as far as early intervention.....well i dont believe anyone can truly measure iq under the age of 3. most will argue you cant really test if a child is uncooperative or non verbal..........so i guess we can rule out iq testing most young asd children :)

regardless........what do you have to lose with early intervention! nothing! the possible gains are well worth it. my son is asd and 2. i knew at 7mos and started ie on my own. other parents are amazed. he is so ahead of alot of children. dont get me wrong *every child IS different, and he is still autistic and has breaks in the ability for his head to relay information/instruction to the rest of his body sometimes......but i would never want to be asking myself 'what if...' like so many parents are doing becuase they didnt.

DONT GIVE UP!

Daddy,

I have 2 boys one who is non-verbal and uses PECS, and it is a wonderful communication system. My other boy had one word at the age of 2, we did not use PECS with him, however we did do VB (verbal behavior). In VB, they prefer that you use sign to augment communication. This is because sign language is processed in the same area of the brain as spoken language. The book More Than Language, is a good synopsisi of both PECS and VB.

For a kid who has no spoken language, I would recommend PECS, but for a kid that has some spoken language, especially a very young child,  I would recommend VB. This is just my opinion, and based on my own experience.

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I am alittle bit worried that using pictures for communications may cause a decrease in my son's interest to find and use the suitable word. Any comment.

BTW I did not find a book named "More than language" in Amazon.com.

[QUOTE=gtto] The person who talked about how much early speech therapy people need:  Please understand that speech is not the same thing as language, and that if autistic children are really going to learn language, then speech therapists should give up their total fixation on and worship of speech as the only "real" means of language and start looking at several kinds of language and trying to see which one is a better fit for the individual child.  There's evidence that many autistic people who are not good at speech, are good at reading and/or writing.
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Isn't is also safe to say that just because an Autistic person cannot verbalize doesn't mean that they don't understand the language? I know that my son understands the language and once he gets going at FC he will probably do very well, but actually verbalizing every word is diffulcult for him.

Daddy,

I have 2 boys one who is non-verbal and uses PECS, and it is a wonderful communication system. My other boy had one word at the age of 2, we did not use PECS with him, however we did do VB (verbal behavior). In VB, they prefer that you use sign to augment communication. This is because sign language is processed in the same area of the brain as spoken language. The book More Than Language, is a good synopsisi of both PECS and VB.

For a kid who has no spoken language, I would recommend PECS, but for a kid that has some spoken language, especially a very young child,  I would recommend VB. This is just my opinion, and based on my own experience.

Hi,  I thought I would introduce myself.  We adopted our daughter 6 years ago from Romania when she was 5 1/2.  We were told she was deaf; however, she is hearing impaired and then we found out 4 years ago she is austistic. 

Right now the big issue for us is behavior.  She initially hurt herself when she was frustrated, but in the past year or so, she has been agressive toward us mostly, and at times strikes out at others.  We had great success with Strattera (for attention) and then in the spring we had good results with adding Resperidal for aggression.  However, after 5 months the aggression returned, and she developed an uncontrollable appetite.  Withdrawal from the meds was a nightmare.  She tends to react opposite to some medicines, so we are currently experimenting. 

Our peditrician sent us to a pediatric psychiatrist for med management.  We tried Trileptal for 2 days and her body became very jerky and tense physically and she was not sleeping.  We just began Abilify, and the first 2 days she was well behaved, but sleeping.  We moved it to the evening and so far so good.

She is 11 1/2.  Another issue is her safety.  She has tried to shave her arm, resulting in a one inch cut.  She sorted through many keys (we have 4 children and 4 cars), put the right key into the ignition and turned on the radio (she was going to the store).  All of this from someone who is on 1st grade level.

Sorry for the lengthy info.  things are very difficult for us right now  We live in lock down.  She is also going through puberty.  This may be part of her problems.  She also has melt downs.  Hopefully we are on the right track.  I cry a lot.  It becomes too much to handle.  I have a small support group at church.  Most people think we're saints (we definitely are not).  The responsibility falls mostly on me.  My husband just can't handle her.  Depression takes hold.  Our marriage has suffered. Life is hard.

I look forward to learning and leaning on you.  Thanks.

• Thurm A,
• Lord C,
• Lee LC,
• Newschaffer C.

Pediatric and Developmental Neuropsychiatry Branch, National Institute of Mental Health, 10 Center Drive MSC 1255, Building 10, 4N208, Bethesda, MD, 20892-1255, USA, athurm@mail.nih.gov.

In 118 children followed from age 2 to 5 (59 with autism, 24 with PDD-NOS and 35 with non-spectrum developmental disabilities), age 2 and age 3 scores of non-verbal ability, receptive communication, expressive communication and socialization were compared as predictors of receptive and expressive language at age 5. Non-verbal cognitive ability at age 2 was generally the strongest predictor of age 5 language, while at age 3 communication scores were a stronger predictor of age 5 language for children with autism. Early joint attention as well as vocal and motor imitation skills were more impaired in children who did not develop language by age 5 (but had relatively strong non-verbal cognitive skills) than in children who did develop language by 5.

< ="1.2"> Links Brief Report: Social and Communication Abilities and Disabilities in Higher Functioning Individuals with Autism and Asperger Syndrome.

• Saulnier CA,
• Klin A.

Yale Child Study Center, Yale University School of Medicine, 230 South Frontage Road, P.O. Box 207900, New Haven, CT, 06520-7900, USA, celine.saulnier@yale.edu.

Individuals with higher functioning autism (HFA) fail to translate their cognitive potential into real-life adaptation, and the severity of their symptoms is considerable despite their intellectual ability. This paper reports on a subsample from a larger study (A. Klin et al., in press) analyzed here by autism spectrum subtypes. It focuses on the nature of ability and disability in HFA and Asperger syndrome (AS) in relation to age and IQ. Participants included 32 individuals with autism and 35 with AS. Individuals with AS had significantly higher Verbal IQ scores and less symptomatology than individuals with autism, but their Vineland scores were equally impaired, highlighting the adaptive deficits in ASD regardless of classification. No relationship was found between adaptive functioning and symptom severity.

International Meeting for Autism Research (IMFAR)
June 2006:

There's a lot of good stuff on this page...

Nowwhat

Gee...I thought I sent in that answer, so here it goes again....PECS, PECS and more PECS. Nothing has been shown to do a better job in early intervention with non-verbal or emerging verbal children.  It makes sense since autistic kids use their visual sense better than their auditory sense that a language system that is visual would be more effective in getting across the CONCEPT of what language is for.  Ask your child's speech teacher all about PECS, how it is being implemented in school/EI and how to learn how to do it yourself 24/7.

Nowwhat --- The research you've posted is VERY interesting.  I plan on reading it all.  It follows exactly what I've observed in life.  The Combating Autism Bill ought to be able to provide the funds to do REAL research into what works and what doesn't.  That is its purpose, I believe.  The only interventions that have research based evidence for their effectiveness are the ones where regular data is taken.  ABA, PECS, VB, RDI....and ONLY if the people implementing the program are also trained to take regular data, as they are supposed to.  Hopefully, with the change in IDEA 2004 REQUIRING that research-based peer reviewed methods need to be used with all spec. ed. kids AND with the passage of the Combating Autism bill, there will be plenty more REAL info in the near future.

I have a comment to make.  Parents here are often asking about ways to predict the outcome for their particular child.  Certainly I was very interested in this as my son grew up (still am).  But I learned long ago to NOT ask the question if we're not going to be willing to accept the answer.  When we ask about predictors of future success, we are ASKING for a generalization, by definition.  We should, therefore, expect the answer to come back as a generalization.  As in, "Generally, IQ scores do predict success in life."  "Generally, all kids on the spectrum, no matter what functioning level, do poorly on adaptive tests which shows that they will have great difficulty in adapting to life."  "Today, adults with ASD are generally not living independent lives."  ALL of these statements is true because each statement talks about what happens to the MAJORITY of kids.  Of course, mine can end up being the exception, your can end up being the exception. Certainly, nothing about my son's scores is going to stop me from continuing to try to get him as far as HE can go.  And it shouldn't stop you.  But if you or I or the person down the street ASKS for what will happen, we are going to get what is STATISTICALLY true.  And, statistically, kids on the autism spectrum who are already HERE (perhaps this will change for those not yet born) will have great burdens in life.  HOwever, we know from studies that the earlier and more intense the intervention, the better. And the number of hours recommended is based on what has been shown in the field.  Ten years ago, the ONLY children who got ABA at all were the severely, classically autistic kids.  Asperger's kids got little or no preschool intervention at all.  That has changed.  Hopefully, that will make the outcome for this generation of preschoolers better.

It would be very hard to recommend anything without knowing the mother, the children, and what services are currently available to them. I really like the book "More than Words" because it discusses both sign and pictures, and it is very easy to read, and has lots of pictures/illustrations, and I don't think it would overwhelm a new parent.

As far as PECS goes, there is no one certified in our state in PECS, so to do it well it would require some effort on the parent's part. There is more to it than simply handing the child some pictures, if you are interested in having a child who is a functional communicator, and especially if you are trying to develop speech. The PECS manual is very well written and easy to follow, but really I think going to a PECS workshop (given by the Pyramid folks who are the only ones certified to teach others about PECS) is the best option. There are of course teachers and SLP's that have been to the workshop, and if this parent happens to have a teacher/SLP who has been to the workshop at her childrens' school, then PECS may very well be the best option. I think it is much more likely that there would be someone knowledgable about PECS at her school, than VB.

There is one VB consultant I would recommend in our state, she is listed on the state autism society website. (Of course this is assuming these children live in our state.) The VB book is not easy reading, although not impossible, it's called Teaching Language to Children with Autism or other Developmental Disabilities, by Sundberg and Partington. If these kids have some speech, and they just need some sign to tide them over until they have more, then that might be the way to go. Or, some kids just seem to do better with sign. I would recommend the ABLLS (Assessment of Basic Language and Learning Skills) as an assessment and therapy guide for most kids with autism, except for the lowest functioning (for lack of a better way to put it).

Gabu-  I have a question for you.  My first response to a parent when they are talking about frustrations because of lack of communication is always picture symbols.  In the case I am thinking of at the moment, it's not even any child that I serve so I've never met the children.  They are twins and are almost 3, but have just entered the Early Intervention System.  They are not dx with anything other than delays.  And the only testing they have had has been through EI.  The grandmother that workds with me asked me a few weeks ago and early intervention and her main concern was the lack of communication and the "fits" they throw when no one understands what they want.  She says one seems to be higher than the other.  I have given this grandmother some examples of the Mayer Johnson picture symbols and a brief write up and of how to introduce them and begin the use of 2 or 3 signs at a time.  I am almost positive that they have no language now, but did have a few words at one time.

After reading your post about VB, I was thinking of these children and  wondering if I should also tell them mother about VB.  VB is not something that I am that familar with.  LIke I said, I believe the language is mostly non-existant right now.  Would it confuse this mother who doesn't know anything about this yet, who just got her children into EI and have no formal dx, (I am not really sure they know that what they are describing sounds a whole lot like ASD.  Although, she did ask me if I thought she should get more testing donw on the boys.)  to give her a 2nd thing to look at regarding language?  If I had to tell her one thing over another, would you suggest picture symbols vs. VB?  I don't want to over whelm this parent and sometimes I can be forceful with the amount of information I can provide to a parent who is just now asking questions about things they can do at home. 

I guess what I am trying to ask is since you have experience with your boys, do you think it's better to recommend a parent read and learn about pciture symbols or VB, or both?  And, is there a book available about VB?

Thanks for responding.  For some reason, your posts in this thread caught my attention and all of the sudden made me think i might could jip this parent of valuable info if I didn't mentin VB.

Receptive language and expressive language are different skills.  Each child is different.

About PECS and sign language. There is research that shows that visual symbols INCREASE the chance that a child will verbalize and BOTH of these programs work to do that.  The advantage to sign language is that we always have our fingers with us.  The disadvantage is the very few people in the larger world understand sign language, so the child is forced to speak only with a few people. The advantage to PECS is that EVERYONE in the outside world understands visual symbols.  The disadvantage is that those symbols have to be brought WITH you wherever you go.  There are PECS books and also assistive devices that older nonverbal kids can learn to use.  There is no evidence whatsoever that using visual ways of communicating suppresses spoken language. In fact, there is TONS of evidence for the opposite to be true.  Gtto is totally right that speech is not language.  The speech teachers I know ALL address language though, eventhough the therapy is still often called "speech."

In my opinion,

So- I think early intervention helps alot. I do think it shaped Jeremy in a way. I can't speak for others, but as hard as it was to send him to preschool when he could not even speak- but I did it- and it helped him. To this day- he loves school. I don't regret any of it either.

Gail

BTW I did not find a book named "More than language" in Amazon.com.

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Sorry, I meant the book you had mentioned "More than Words"

Using sign, pictures, or any alternate form of language will not decrease your child's speech, but instead will decrease frustration about being unable to communicate, and show him/her the power of communication.

It seems to me that sign works best for kids with autism, when it is used as a bridge to spoken language, instead of an alternative to speech. Having said that, I totally agree with gtto that the individual child's abilities should be the top priority. I have known children that did better with sign than pictures, and have known children (like my own son) who did better with pictures than sign. Furthermore, if your child shows signs of hyperlexia, it may be best to move on to written language.

I have not seen any research that shows one form of augmentative communication is better than another. I have been to both VB conferences and PECS workshops, both camps claim their method is best. I truly believe that there is no one method that will work for all children, and that trial and error may be necessary.