Home > News & Opinion > News > 2013 > Study of nonverbal autism must go beyond words, experts say

Study of nonverbal autism must go beyond words, experts say

Popularity tracker
Sarah DeWeerdt
2 September 2013

Sound out: Interactive devices do not hinder nonverbal children with autism from learning to speak, and may even help them.

Roughly 25 percent of people with autism speak few or no words. A generation ago, that figure was closer to 50 percent. Most researchers agree that the decline is due to the recognition of more people with milder forms of autism, as well as to the advent of early intervention programs  that have helped more children develop language than in the past.

“One of the primary success stories of early interventions is that they promote language development,” says Helen Tager-Flusberg, director of the Research on Autism & Developmental Disorders program at Boston University. “Nevertheless,” she says, “there are clearly individuals who are diagnosed early, do have access to high-quality interventions, and still fail to acquire spoken language.”

Paradoxically, many researchers now argue that in order to better understand and treat this subgroup of nonverbal people with autism, the field needs to move beyond focusing on speech production. Emerging research suggests that seemingly unrelated issues, such as motor skills and joint attention, may instead be key.

Language delay gets a lion’s share of the attention perhaps because it is often the first and most compelling sign of autism. “Parents, pediatricians, psychologists — everyone, we all focus on word production,” says Joe McCleery, lecturer in developmental neuroscience at the University of Birmingham in the U.K.

But factors that are usually thought of as being outside the realm of speech and communication, such as memory or motor problems, may also play a role, McCleery says. If an infant can’t coordinate movements — such as babbling while rhythmically banging hands on a table or high-chair tray — which is thought to contribute to later language development, then speech may be stymied1.

“It’s very likely that the reasons for why they’re not speaking may be related to a range of different underlying mechanisms,” says Tager-Flusberg.  “Once we understand them a little bit better we’ll be able to target the therapies toward the specific kinds of problems that we identify in different children.”

Defining silence:

At the moment, though, children with autism who speak few or no words have received so little research attention that the most basic questions are still on the table.

“We don’t have a really clear definition of what it means to be minimally verbal,” says Connie Kasari, professor of human development and psychology at the University of California, Los Angeles.

Without a firm definition, it’s difficult to compare the findings of different studies. For example, various studies have defined children who use anywhere from 5 to 30 functional words as minimally verbal.

“Most kids are not truly nonverbal, which indicates that they have no words and no sounds,” Kasari says. Instead, they may say single words such as “Mama” and “Dada,” and even a few phrases, often ones that they repeat over and over without regard to context.

The number of words isn’t the only thing that determines whether a child is minimally verbal. Age also matters, as researchers are learning. A child who isn’t speaking at age 2 or 3 might be better thought of as pre-verbal, albeit with a language delay. But one who doesn’t speak at 6 or 7 years, especially after many hours of intervention, is much less likely to ever learn.

One study published earlier this year analyzed data from 535 children with autism enrolled in the Simons Simplex Collection, an autism registry funded by SFARI.org’s parent organization. These children weren’t speaking in two-word phrases at age 4, but 70 percent reached the milestone by age 8, and nearly half were speaking fluently by that time2.

“We found that more children did go on to gain phrase speech than previously thought,” says study leader Ericka Wodka, a neuropsychologist in the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

Wodka and her team also found that children with low levels of social impairment and high nonverbal intelligence quotients (IQs) are the most likely to learn to speak.

“I think what our research points to is that social goals really must be considered in intervention as well,” Wodka says. That is, she says, therapies need to focus on not just the ability to produce words, but the motivation to use them.

IQ is clearly also a thorny issue. Many minimally verbal children are intellectually disabled, but Kasari says she has known some children who could not speak, but could read.

“It can be difficult to tell how intellectually impaired somebody is,” says Nancy Brady, assistant professor of speech, language, hearing sciences and disorders at the University of Kansas. “If they can’t speak, then we maybe undershoot them when we assess them and assume that they are much more impaired than they actually are.”

To circumvent this problem, Brady is developing the Communication Complexity Scale to assess nonverbal communication. This test assesses, for example, whether a child uses gestures to request help with opening a clear plastic jar to obtain a toy3.

“Now we’re looking at what they can do, instead of just what they can’t do,” Brady says. “It allows us to identify more attainable short-term goals.” Therapists may work to help make a child’s gestures clearer and help parents interpret them as a stopgap measure while also working on spoken language development.

Treatment trials:

Children can communicate nonverbally using a variety of approaches, including cards featuring simple line drawings (known as the Picture Exchange Communication System), by typing on an iPad, or with the aid of a speech-generating device that can be programmed to say words aloud for the child.

“There are a lot of people out there who don’t want to use some sort of augmentative system, because they think the kid won’t talk,” Kasari says.

But in fact, the opposite may be the case. Kasari has unpublished data showing that minimally verbal children who also used a speech-generating device early in therapy have more socially communicative utterances after six months than those who get the device later. It’s not clear why, but “it seems to augment their own ability to talk,” Kasari says.

Still, little is known about how to match minimally verbal children with the best therapies to encourage them to develop spoken language. “We have no idea which kids are going to respond to which interventions,” McCleery says. “The more information we can gather on that, the better.”

There are a few glimmers of promise. Tager-Flusberg and her colleagues are planning a randomized trial of auditory-motor mapping training, a therapy that combines rhythmic hand movements with a sing-song intonation. The approach has been successful in treating people who have lost the ability to speak after a stroke, and pilot studies suggest it can also help those with autism4.

Another intervention that may be particularly helpful for minimally verbal children, called JASPER, emphasizes joint attention and play skills that precede, and may underlie, spoken-language development.

“Most kids look to their parents; they look to objects; they show toys; they point to things; they do all of these things before they ever learn words,” says Kasari, a developer of the therapy. “So I think teaching those particular skills helps fill in those gaps, and helps kids learn language faster.”

Kasari and her colleagues have found that working on these skills is particularly helpful for children with the lowest language abilities5, even those who are intellectually impaired6.

With better treatments, almost every child with autism could learn to speak, Kasari says. But even if a few rely on nonverbal or augmentative systems for the long term, that might still be counted a success, she says. “Every child needs access to communication.”

News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation.

References:

1. McCleery J.P. et al. Front. Integr. Neurosci. 7, 30 (2013) PubMed

2. Wodka E.L. et al. Pediatrics 131, e1128-1134 (2013) PubMed

3. Brady N.C. et al. Am. J. Speech Lang. Pathol. 21, 16-28 (2012) PubMed

4. Wan C.Y. et al. PLoS One 6, e25505 (2011) PubMed

5. Kasari C. et al. J. Consult. Clin. Psychol. 76, 125-137 (2008) PubMed

6. Goods K.S. et al. J. Autism Dev Disord. 43, 1050-1056 (2013) PubMed

Comments

Name: Anonymous
2 September 2013 - 3:56PM

Teaching autistic children to be "like most kids" is like teaching the blind to see. The key must be compensatory strategies, that allow the fullest interaction with others who don't think the way they do. Are non-verbal autistics doing better with visual/kinesthetic interventions (which is what the interactive device amounts to)because the multisensory approach allows them to interact with this strange thing called "language"? Does Kasari's sing song relieve the typical drudgery of ABA and allow for movement? For whatever reason, so many are drawn to music, even before language. (http://www.wimp.com/guitarguy/ --- http://www.autismspeaks.org/blog/2013/07/18/nonverbal-child-autism-sings-whole-new-world ) I think that's wonderful and wish her much success.

Dr.Jon Brock's lab did a study of "Oscillatory neural responses to speech and nonspeech sounds in a nonverbal child with autism". http://crackingtheenigma.blogspot.com/2013/05/come-and-find-me-at-imfar-2013.html Although it was a case study...to my mind, that is where you begin, with observation outside the bounds of statistical analysis of populations. The work brings up some interesting questions. He also sets a standard of working with highly disabling autism in children typically ignored because of the difficulty and lack of training (and fear?) among scientists. As a parent, most of us are aware that language is a second language for our children. Now, science knows. With numbers. It is the crux of the "disability", but I think of one of my hero's, Helen Keller, who was highly BEHAVIORALLY DISORDERED until a channel, a highly atypical one of kinesthetics, touch, and vibrations opened up language to her. (Autisms, Blindisms, Deafisms, Dr. Rimland correlated them years ago.)Our children's language channels are closed. We can find a way to reach them, but it takes dedication and hard work.Dr. Brock has taken the challenge very seriously to my mind, and I am so pleased to know of him.

Name: usethebrainsgodgiveyou
2 September 2013 - 3:57PM

I apologize for not being able to format links. Is it possible on Sfari?

Name: Candie T
4 April 2014 - 8:29AM

I so agree SAM. It's pathetic that it's 2014 and just NOW researchers paused and thought, Gee, we better look at the underlying etiologies that are involved in autistic people who don't talk. One of the major underlying issues is neurptransmitter dysregulation.

Name: SAM
3 September 2013 - 2:42PM

Nonverbal kid like mine, 11 years old has never been called once by any research center to investigate if any underlying medical condition exists for him not been able to talk. And all this, under Eric Fombonne who, a big expert "lol", sits on the board of directors at Sfari. Though they are very good at financing epidemological studies which often contradicts another study for the same objectives that was performed previous years... and the circus keeps on ongoing. Seriously...70 years over Kanner initial diagnosis, 30% nonverbal on autism spectrum, and now Sfari is taking the nonverbal aspect seriously...

Name: Joanna
3 September 2013 - 3:24PM

Am surprised at the lack of attention to motor planning in this articles discussion. As an OT, and a mom of a child with Autism, I've noted how this plays a serious role in language development.

Name: as an OT i AGREE! (sensory integration and motor planning. after working many yrs (20+) using rhythmic vestibular/proprioceptive ballwork with simple music i usually got more speech-autistic or not
24 January 2014 - 9:34PM

As an OT i AGREE! for over 20 yrs i had hardly no clients (autistic or not) that didnot speak GIVEN rhythmic vestibular/proprioceptive ballwork with basic toddler music

Name: Mindy
3 September 2013 - 10:35PM

Yes, I have a 28 year old son with autism who lost language and now types to communicate with backward pressure exerted on his arm to slow his movement.
He has recently been diagnosed as "locked in" which is perhaps the case with many non-verbal children with autism. Movement differences play a huge part. His lack of control to express himself independently causes him a lot of suffering.

Name: Candie T
4 April 2014 - 8:32AM

Blame the American Medical Community as well. So far, NOBODY has established a protocol or standard of treatment for severely autistic people who can't talk, to see if underlying medical issues are contributing to the inability to talk. Those issues can be in the brain, or other parts of the body involved in producing speech....if left untreated they can evolve into aggressive or self abuse type behaviors. We desperately need a medical standard for treating severe autism in the USA, that is funded by our government to help off set the cost of testing.

Name: Amanda
10 September 2013 - 10:06PM

I totally agree with Sam. It is incredible that a) there is so little research done on this population and b) there is no mention here of the underlying medical conditions that often lead to and perpetuate severe autism. Behavioral interventions alone are unlikely to help those with severe autism, this type of clinical research should be done in partnership with immunological, gastrointestinal and metabolic experts.
Motor planing and sensory motor treatment is also essential to this population

Name: Sue Gerrard
12 September 2013 - 7:04PM

I have to echo the views expressed in the last few comments. It does seem to have taken the research community an awful long time to cotton on to the importance of the non-autistic characteristics of people with autism.

Name: Francine Juhasz, Ph.D.
26 September 2013 - 8:19PM

As a psychologist working with parents of autistic children, I have discovered some parents find an astrological chart of their nonverbal child a valuable resource. A well-interpreted chart can say what a child cannot say. Such a chart can reveal the child's unique personality and inner life, including his or her special interests. Many parents have used these charts to choose books to read to their children, or books they themselves create, that better match the inner life of their child. Then, too, greater knowledge can lead to greater love. Repeatedly, I have found the insights and understanding gained through an astrological study can not only soften parents' emotional reactions to their child's autistic behavior, it can help establish in their hearts an even greater fondness for that child. Francine Juhasz, Ph.D., Author, Your Autistic Child's Secret Inner Life

Name: usethebrainsgodgiveyou
4 October 2013 - 1:05AM

There is so much that is out there now, even for non-verbal (Higashida, Naoki -- The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism . Random House Publishing Group.) There is so much...if researchers could take advantage of the people and parents who are keying in to the differences that autism bestows on a person, even a non-verbal person, we could be so much closer. I just finished The Reason I Jump. There is no reason why that book shouldn't be digested by every researcher looking into autism from the inside. We are at the Apex of a beautiful time to learn. When my son was first diagnosed...he is mild, probably SCD now...there were 2 books by people with autism in the libraries. Why we continue to ponder "theories of mind" when we have people who are literally (double entendre) giving us their minds in carefully worded books....sigh...is unconscionable.

Name: Farrah Mackenzie
17 February 2014 - 7:29PM

My 6 year old son has had his asd diagnosis for 3 years, he has been classed as non verbal, has tried pecs twice, uses a mixture of makaton, pecs, gestures, and sounds to communicate. We have tried hanen more than words, and are desperste to hear him speak or unlock his speech, what else can we do? every other country thinks stem cell therapy is the way, please help me help my son?

Name: Alexandra hopwood
1 April 2014 - 9:24PM

Hey Farrah,
I would look into something called the rapid prompting method - a parent developed this approach for her non-verbal 'severely' autistic child - he is now able to point independently on an iPad to communicate not just his needs/wants but also his thoughts. The book recommend earlier (the reason I jump) is written by a boy who learnt how to point to speak using RPM. I have used this approach with several children now and it is clear to me that children with autism do not have an input problem (they are soaking everything in) - they have an output problem - rpm helps children to show their intelligence and after practise, share their thoughts.

If you would like me to send you some links to videos to give you a better understanding /links to parents and autistic people's blogs then send me a message - alhopwood@hotmail.co.uk.

All the best

Name: Shirley
16 April 2014 - 12:20PM

Sounds like your after a magic bullet.
Some kids there is no cure, actually in most. Just hard work and perseverance and acceptance.
Why use your child as a guinea pig for stem cell, to make yourself feel better?

Name: Sugie
10 May 2014 - 1:34AM

My 2 yr. old grandson was diagnosed with autism recently. He's able to speak 4 words...eat, mama, dada and his sister's name LayLay. He's such a happy child. He loves Sprout lullaby song. He can't sing the words but he hums it every night until he fall asleep. I believe he understands spoken words. He gets really upset when he's told 'no' and 'don't do that'. Would you, please, lead me in the right direction to better understand autism. What does on the spectrum mean? I would appreciate all information, thanks. PowellAnn@JohnDeere.com

Name: Grace
28 July 2014 - 1:14PM

my 4yr.old grandson cant talk can only say a word or two unable to say a full sentence is he autism

Name: Michael
15 September 2014 - 2:10PM

We were able to recognize symptoms and acquired a diagnoses of Autism for our daughter at just under the age of 2. Since then she has been going to OT, Speech, recieving a steady regiment of ABA therapy and (at 3) began spending time in a classroom setting. She is a generally happy girl, is great with numbers, letters and puzzles. However, at almost 5 years old, she is still not making words. Can someone out there PLEASE tell me if there is anything else we can be doing. While we don't admit it to one another, I think we (my wife, the therapist and I) are begining to quietly lose hope.

Name: ann richardson
30 October 2014 - 6:21AM

My 3yr old grandson will be starting school tomorow and he has just had n iep a.d with the doctrtor's finding out he shows signs of autishm spectrum disorder. what goal should I want to see them accompolish with him

Add a Comment

You can add a comment by filling out the form below. Plain text formatting.

Question: What is 10 + 4 ?
Your answer: