The U.S. National Institutes of Health recently held a workshop on nonverbal school-aged children with autism. The sponsoring Institutes were:
National Institute on Deafness and Other Communication Disorders
National Institute of Mental Health
Eunice Kennedy Shriver National Institute of Child Health and Human Development
The scope of the workshop was:
In April 2010, the National Institutes of Health (NIH) convened a multidisciplinary workshop to discuss the state of the empirical knowledge about, and research opportunities regarding, the substantial subgroup of children with autism spectrum disorders (ASD) who have not developed functional verbal language by five years of age. The discussants reviewed the current state of scientific knowledge, highlighted critical gaps in our knowledge, and identified research opportunities to address knowledge gaps. A series of presentations and group discussions addressed the three major topics of the workshop.
The topics included
Topic 1: Who are these children? What do we know about their developmental trajectories?
Topic 2: How can we assess their skills and knowledge across different domains, with special reference to those abilities relevant to language acquisition (e.g., verbal comprehension, sensory and motor skills, apraxia)?
Topic 3: What treatments/interventions are effective in improving spoken language and communication in these children (augmentative and non-augmentative methods)?
and
Research Gaps and Opportunities
The workshop summary is very interesting. It reinforces what is probably an obvious point: any language, no matter how small, is a big leap forward. Any verbal language by age 5, echolalic or otherwise, is a big indicator of verbal language gains later. Apraxic kids with autism are very diverse, just as all autistic people comprise a very diverse group.
Most of the apraxic/autistic kids who will become verbal start in the 5-7 age bracket. There is an example of a child attaining verbal language at age 13.
Dr. Cathy Lord discussed the characteristics which are related to whether an apraxic/autistic child becomes verbal:
* Intellectual disability
* Little desire or motivation to communicate
* Poor socialization scores (Vineland)
* Presence of challenging behaviors
* Impaired joint attention
* Impaired imitation of sounds and movements
* Specific language and other motor factors
Dr. Barry Gordon discussed the characteristics of those children who transition from verbal to nonverbal nonverbal to verbal:
# Age (most children who started speaking were between 5 and 7)—none over age 13.
# Some conceptual and semantic abilities.
# Strong motivation to communicate via oral speech.
# Specific training in the formation of sounds and words. Such training needs to be very intensive (often ABA approaches) and highly flexible, taking into consideration individual child abilities.
# With intervention, 70% acquired production of words, only 30% developed phrase speech
What is not noted is how many children acquired production of words without intervention. This is not an experiment I would propose (at all), but it would be good to have that baseline number to compare to this 70% number. Obviously, it would be good to see what interventions work and with which groups of children. There was discussion of various methodologies (ABA, PRT, PECS, as well as augmentative communication methods)
One point made, and this is very important, there is very little research that concentrates on the nonverbal school-age group. My guess is that there is even less research on nonverbal adults.
This is something that needs to change. I appreciate that the NIH held this workshop, but unless research funding is allocated to apraxic/autistic kids, there will continue to be huge gaps in the knowledge base.
Left Brain Right Brain 
I’m glad to know that there is at least interest in this area of children who are over the age of 5 and non-verbal. Thanks for blogging about it.
BTDT,
the trick now is to move this from a workshop to funded research to something applicable.
Were they saying that no children over the age of 13 in their study acquired speech, or no children they were aware of, ever? I know I’ve encountered a few people in the community who acquired speech after 13. Also, at an iacc meeting I attended last year, a woman (whose name I can’t recall) gave a presentation on AAC and mentioned studies which show that kids given AAC are more likely to eventually develop speech than kids who are not. This may have focused on toddlers, however.
Katie,
these weren’t studies, but reports given in the workshop. There could be older individuals who were able to obtain verbal speech after age 13. Just not in their experience.
Katie,
Are you familiar with when a good age to introduce an AAC device is? My son is four and still non-verbal. My ABA and speech therapist both suspect that he has apraxia as well as autism. He has had a hard time with sign language because of his poor fine motor skills and lack of motor planning. We have just started to introduce pecs. I know he is still very young but I fear that he is not very motivated to learn to speak. He has this very easy going personality which I love but in some ways it translates into a lack of motivation. He rarely gets frustrated because he can’t communicate.
Shanna,
you might want to sign up on the apraxia-kids listserv
http://www.apraxia-kids.org/site/apps/nlnet/content2.aspx?c=chKMI0PIIsE&b=699875&ct=464191
By all accounts it is a high volume list, but you could start asking questions about apraxia and AAC there.
Sullivan,
Thanks for the link. Sometimes it can feel a little overwhelming trying to make decisions about what direction to go in as far as therapy goes. I feel like everyone (therapists) have a different opinion. Anyway, I appreciate you taking the time to send me the link.
“Dr. Barry Gordon discussed the characteristics of those children who transition from verbal to nonverbal”
Don’t you mean the opposite, ie. transition from nonverbal to verbal?
Also — I think the studies that Katie mentions upthread that show that kids given AAC are more likely to eventually develop speech than kids who are not represent the tip of a very important iceberg. I’d like to see studies that look at associations between kids acquiring and leveraging AAC and other outcome indicators, such as incidence and severity of maladaptive behavior, academic progress, and acquisition of key independent living skills.
I fully realize that “the plural of anecdote is not data”, but anecdotes understood in proper perspective can often suggest worthwhile followup with rigorous research. And the anecdotal sense I get, having been a part of the autism community for 16+ years, and having served in the lay governance of organizations with roots in all parts of the spectrum, is that acquisition and leverage of a reliable, trusted, and respected form of expressive communication — whether speech or AAC — is a *huge* indicator of positive outcomes with respect to successful transitions and maximally independent adult life. Perhaps the biggest predictor of positive outcomes after avoiding institutionalization (which, in this post-Olmstead-decision age, should be on the decline, but perhaps isn’t as diminished as it could be).
If more rigorous studies concur with what is suggested by anecdote in this area, that could really help boost funding and access to AAC and very directly positively impact the quality of life of many autistic people and their families.
Phil Schwarz,
thanks for that correction.
I think you comment has a lot of merit. With the drop in the cost of AAC (e.g. the ipod/ipad example), it would seem like the barrier to trying it on a broader basis should be low.
I am shocked that the level of research on this very important group of autistics is so meagre.
[LBRB say] One point made, and this is very important, there is very little research that concentrates on the nonverbal school-age group. My guess is that there is even less research on nonverbal adults.
[Phil Schwarz] And the anecdotal sense I get, having been a part of the autism community for 16+ years, and having served in the lay governance of organizations with roots in all parts of the spectrum, is that acquisition and leverage of a reliable, trusted, and respected form of expressive
COMMENT:
the anecdotal sense after 16+ years…is the same sense i get after 40+ years…believe your anecdotal sense is also known as observational science…the original and basis of much real science…eg, gravity and general relativity….still being proved after 90 years:)…those on the spectrum cant wait another 90 years…
any links to research appreciated.
There has been little or no research (that i find) on nonverbals and the innate ability many have to learn without formal training. This has been observed on numerous occasions…believe the first was in the mid 60s…ie
[ref 1 say,] “…Dr Goowins recalls jackie’s first encounter with E.R.E.: […] during the next half hour, without anybody in the booth with him [no facilatator] he typed about 20 lines of apparently random letters, some of which recognizable words: ivory liquid, Clorox, arrid deodorint, mr clean and other brand names from tv commercials. he was completely absorbed in what he was doing.” [note: Talking typewriter = Edison Responsive Enviorment = E.R.E.; a $30,000 room with keyboard, screen and audio…compare to today‘s $300 ipod]
Ref 1 continues] “…the rapid change in his behavior is particularly striking since most of the other methods used to reach such autistic children have involved prolonged, round-the-clock relationships with therapists.” [eg, ABA at say $40,000 per capita, annually]
Perhaps a reason for the very little research (since first observed in mid 1960s) is promotional scientists demote the observantion of this innate ability to promote their lucutive cottage industry.
[ms dawson say] For those promoting ABA-based autism interventions, claims of effectiveness unfounded […] any experimental design carrying the risk of being informative about the benefits and harms of ABA-based interventions has, for a long time now, been considered unethical.
http://autismcrisis.blogspot.c…..chive.html
worth noting, the science used for promotion and demotion is the same science…one that denied observational science exist…ie, one wannabe hard scientist say: “As for the ‘seeing is believing’ science…that is not science”…
stanley seigler
Ref 1 xxxxxxxxxxxxxxxxxxxxxxx
Excerpts from NYT 9may65 by maya pines (sorry couldn’t copy entire article and i am a slow typist…perhaps someone has a link to the article)
…Dr Godwins recalls jackie’s first encounter with E.R.E.: […] during the next half hour, without anybody in the booth with him [no facilatator] he typed about 20 lines of apparently random letters de, some of which recognizable words: ivory liquid, Clorox, arrid deodorint, mr clean and other brand names from tv commercials. he was completely absorbed in what he was doing.
…we really didn’t know what we had here, she says, except that it was very interesting…
…in the next occasion jackie said “want to type” he continued to two or three times a week…once he played with the carriage return, and then in the middle of the blank page he carefully centered the following three words: BOXED, TAPED, WARPED
…within two months of jackie’s first typing lesson his father reported the boy had far fewer temper tantrums. jackie was also beginning to show some interest in the child next door, whom he had previously ignored…
…he has now paid nearly 70 visits to the laboratory. during this time he has changed from a non communicating, wild looking, often violent child to one who for long periods seems perfectly normal. although he is still far from well and his improvement may be only temporary, he is no longer a candidate for the state hospital…
…the rapid change in his behavior is particularly striking since most of the other methods used to reach such autistic children have involved prolonged, round-the-clock relationships with therapists.
…Dr Goodwin says, something perfectly extraordinary has been going on in front of our eyes and she has presented her clinical reports before two medical groups…
…one boy of 14, a nearly mute schizophrenic who had failed to improve during 10 years of intensive psychiatric care, began to type, sing and talk when left alone with the E.R.E. he acted out an incident which according to his records happened to him when he was 2-1/2. after 15 hours with the E.R.E. he had improved to the extent that he was able to reply, when asked where he was going, “to cooperstown, to read a book.”
Joanne Cafiero, PhD, is the woman who presented on AAC at the IACC last year. Her website has articles, and it looks like she does consulting too.
http://www.cafierocommunications.com/index.html
Thanks for the information. It offers some indication of why Alex is having so much more difficulty picking up and using verbal language than his brothers.
I really, really wish there was more research. Why can he write, but the rare times he speaks it’s like he’s forcing the words out through a wall? What does it mean? How can we help? Why aren’t these questions being answered?
While I appreciate the honesty of medical practitioners, therapists and researchers when they say “I don’t know,” I just wish they didn’t have to say it so often.
Stephanie,
this would be a good thing to email the IACC about. Call for more research.
iaccpublicinquiries@mail.nih.gov
[Katie say] Joanne Cafiero, PhD, is the woman who presented on AAC at the IACC last year. Her website has articles, and it looks like she does consulting too.http://www.cafierocommunications.com/index.html
thanks for the link…still looking for research on the innate ability, to learn without formal education, some/many on the spectrum have and has been observed since at least since the mid 60s…didn’t find it here…perhaps quick read too quick…if overlooked pls advise…
if interested believe the link provide will produce the complete NYT, 9May65, article referred to earlier…
Click to access NYT%20Talking%20Typewriter.pdf
the thrust of this article was the talking typewriter as a tool to teach reading…the connection to autism was ignored.
this ability popped up again in the early 90s…eg:
Excerpts (not exact copy)from Rimland 1990 articles…
…Several very dramatic cases of QBIs [quantum behavioral improvement] were reported in the NY times and elsewhere, in the mid-1960s, in accounts of the work of pediatrician Mary Goodwin, who used a primitive computerized teaching machine, the talking machine, to instill a bit of language into a number of severely handicapped autistic children.
…Several years ago renowned physicist Arthur Schawlow reported the remarkable results he and his wife had observed not long after providing their then 27-year-old son with a small hand held Canon communicator […]
…Other methods should be tried until, hopefully, communication ability and perhaps QBIs can be achieved…You can be sure the editors of ARRI will keep its readers informed of developments in this important field.
…Autistic Crypto-Savants: Joey communicates only in writing and only when his teacher*s hand is touching his…Another did algebra with mother*s hand on shoulder [FC]. Mother did not know algebra. So the case was convincing, tho surprising…The phenom is intriguing, and beg exploration…Time [1990] to start.
end excerpts…for rest of story goto: http://www.autismwebsite.com/arri/v041/page3.pdf%5D
perhaps current Rimland legacy should be reminded of this… A most interesting piece of history…read entire article at links (sorry couldnt cut/paste, a computer illiterate)
rimland article links: http://www.autismwebsite.com/arri/v021/page3.pdf; http://www.autismwebsite.com/arri/v041/page3.pdf
stanley seigler
Thanks, Sullivan. I’ll do that.