Join My Newsletter

Mona Delahooke PhD logo

Mona’s Blog

Being Nonverbal “Doesn’t Mean I Can’t Think”

October 29th, 2015 | 23 Comments | Blog

Not long ago I had a conversation with an autistic young man I know. Noah, who likes watching football and playing video games, uses an iPad to communicate. When I told him I was writing a post about how people use the term “nonverbal,” his eyes lit up, and he started typing. He told me that one of the most difficult things in his life is how often strangers assume that he is mentally deficient. “Tell them that just because I can’t talk,” he wrote, “doesn’t mean I can’t think.”

I have found that many providers also make that incorrect assumption about children who are nonspeaking. When I studied psychology in graduate school decades ago, I was taught that more than half of “nonverbal” children diagnosed with autism were “mentally retarded.” Both terms have since come out of favor (nonspeaking is more accurate than “nonverbal” since many individuals who don’t speak communicate by other means), but many people still assume that individuals who don’t have the ability to speak are “low functioning”–that children without access to spoken language have weak minds.

I have learned through my clinical experiences and from stories shared online by countless teens and young adults, that this correlation is not only false, but harmful. For instance, when educators automatically equate nonspeaking with “low functioning,” they underestimate student’s intellectual capacities, often removing children from inclusive programs to place them in separate special education classes that may not be appropriate or academically sufficient.

Of course, the truth is that autism and other forms of neurodiversity vary along a wide spectrum, and no two individuals are alike. Professionals and teachers should recognize that, and value and support each child with fresh eyes and open minds.

A small but growing number of scientists, including Elizabeth Torres, Ph.D. and Anne Donnelan, Ph.D, have argued that autism primarily affects motor control (movement), with many variations and permutations. The more severe the sensory and movement challenges, the more “low-functioning” the individual appears—on the outside. But we need to look below the surface to discover a person’s true capacities.

Viewing autism as a sensory and movement disorder radically changes how we support children in daily life, therapy, and the classroom. It forces us to find new ways of evaluating underlying functions and capabilities in sensory and movement issues.

Most traditional tests of cognitive function are designed with the assumption that the person being evaluated has an intact motor system, so these tests underestimate children with motor challenges. To offset this bias, evaluation teams should include experts in sensory integration and motor functioning (typically occupational therapists with specialized training) as well as speech and language therapists who specialize in augmentative and facilitated communication.

When we focus on a child’s individual differences—including sensory and motor capacities—we shift our priorities from focusing on skill acquisition to helping children to overcome challenges to communication.

Ido Kedar, a teen with autism, articulated the mistakes professionals make when he described his own experience with Applied Behavioral Analysis, the most common treatment approach for children with autism:

“ABA believes autism is a severe learning disability that is treated by drills, rewards and baby talk. This makes recognition of the motor challenges nearly impossible because all the data from the child’s success in performing the drills is interpreted as a measure of how much the child understands speech, and not of whether the child can get his body to move correctly.” (Ido Kedar, 2015)  (http://idoinautismland.com)

If you work with children or teens with autism or related challenges, reconsider how you use terms such as “nonverbal” and “low-functioning.” If we broaden our thinking to understand individual differences better, we will move the intervention fields forward. Together, we can engage in a dialogue and learn what it means for a child not have access to spoken language. As Noah taught me, just because a child can’t talk, it doesn’t mean that he can’t think.

Please feel free to comment below and visit my Facebook page for parents and professionals.

SHARE THIS ARTICLE
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
    6.1K
    Shares
  • janemiranda FITCH

    Such an important article, Non verbal means we must communicate and engage creatively and through modalities other than our default riigid wordy way. Drills and rewards seek to modifiy of behaviour – but the behaviour is the communicaton. ……it just means WE are Not Listening.

  • Casey Heath DePriest

    YES! YES! YES!!! It is time we all #rethinkautism and begin recognizing this important research you mentioned about the movement and sensory differences in ASD – especially in those considered nonverbal or non-reliably verbal!! We are currently working on additional research related to how rhythm can support and improve functional movement, regulation, and communication for these individuals. The supports we have developed are now allowing nonspeaking students who have spent years in ABA and life skills classes to transition into full day general education curriculum with supports for their body and their communication. They are now communicating with their families and peers for the first time in their lives. We are learning so much!! If a student can’t feel his body, how can we expect him/her to respond in a reliable way? Many students are now describing their experience of being in a “broken body” but being totally aware of everything going on around them and feeling so very frustrated that no one is “finding” them. This HAS TO change! It’s time to recognize that the “least dangerous assumption” is to presume competence in these individuals and recognize that our false assumptions about their intentions or behaviors are underestimating them and neglecting who they are and what they are capable of with the right supports and accommodations. Please consider joining us for the Rethinking Autism Conference in Evansville, IN in April 1-2, 2016. More info coming soon!

  • Mona Delahooke

    Thank you Casey!

  • Mona Delahooke

    I agree, thank you for commenting!

  • PAULINE.HACKETT@HOT MAIL .COM

    my son does not speak has sever autism and some sensory issues smelling and sifting sand and small rocks etc he used to talk as toddler in single words. he does signe me and gets cup for drink and goes to cupboard or fridge freezer for food gets car keys for drive etc on ohter things too. i was told thats his intellectually delayed as well as autism so is that the same as retarded i don,t think it is as most young children with autism cos most would be in there own world confused with our world when at first diagnosed. and then some have days when they r not fully tuned in cos of sensory overload or unfamiliar people or out of routine

  • Mona Delahooke

    Dear Pauline, Continue to advocate for your son. Specialists in augmentative and facilitated communication are so useful for nonspeaking autistic children. Get to the right specialists for your unique child. Wishing you the best.

  • Cheryle Taylor

    I totally resonate with what is written here! My almost 7 year old grandson is non-speaking (though he had language until about 21/2 yrs). I see his incredible intelligence & also his increasing frustration as we are not understanding his wants and he can’t express what he wants. He is in a small school of 20 children, most with varying ‘degrees’ of autism. He has been receiving ABA support for a few years and recently began using a tablet (though currently being repaired after he broke it!). His father (my son) was recently told by the social worker at the school that Brady is the ‘most behaviourally challenging’ child that they have! In my view this indicates a child that is not being assisted in a way that best supports his learning needs!
    I feel incredibly helpless, as a grandmother!!

  • Michelle Sarabia

    I frequently end up with nonverbal students, autistic or not, speaking or writing confidently before leaving my program. It really is about providing a comfortable, accepting place with effective sensory supports, waiting for processing time, and validating the person’s message.

  • Josiane Bonadonna

    Indeed! This question does not occur for dumb people…

  • Mona Delahooke

    Yes!! Thank you for the work you do. Relational and sensory support, plus patience, is key.

  • Mona Delahooke

    Keep supporting them all–behavioral challenges indicate the adults need to work harder to understand and support the child. Relational and sensory support individualized to the child, plus patience, is key.

  • Michelle Sarabia

    I just hope others read this and it helps them think in the right direction when they’re with people who perceive and communicate differently. 🙂

  • Danielle Lawless

    My autistic child has been labelled with intellectual delay impairment – From what – cognitive assessments and functional assessment which are not designed to take into consideration autistic difference – In ”judging” anyone’s capacity absolute care must be taken – Until cognitive assessments and functional assessments are done on every single child I am personally not convinced on what they have to say about the children that they do – I say children as it is children who are predominately tested and at schools and usually for children who do not thrive under standard paradigms of leaning – We need to take care when establishing autistic difference that we do not do exactly the same when we talk about those with an intellectual difference – the key in my mind is to find different ways to assess and to develop more appropriate paradigms of thinking of difference and accommodating that in systems of education etc. Otherwise people will continued to be considered less than who they are and be continually labelled as support needy – what do I mean by this – I will use education as an example -Any mainstream learning paradigms already have intrinsic ways of learning, strategies methods approaches etc – these are not described as ‘support’ although this is in fact what they are- For any child who struggles significantly within these paradigms are automatically differentiated as students with extra needs who required extra support – In my mind the first step on the road to exclusion – For those who have not got a label at this point there is a mad rush its seems to ensure one is given -With a label of difference theycan become reliant on whether the system will see it worthwhile to provide this extra support for the extra need – from my experience the answer is significantly no – And the support they often decide is relevant and reasonable is quite often made on dangerous label presumptions, generalisations and a predominance to keep fixing the person until they fit in to mainstream ways of learning

  • This is such an important article that everyone needs to read!

  • Mona Delahooke

    Thank you Leah! I hope special educators and parents alike read it.

  • Karen Beck Pooley

    Thank you for this post! It was very timely for our family since my son, Jace, had just finished and shared his “autobiography” about a week ago. Jace is 7 and primarily communicates through a pencil and paper. I hope you don’t mind – I have to share it here…

    “My name is Jace Elliott Pooley…I have a sister Keller who is so nice. Of course I am a boy but I am different than you. I cannot talk as most of you can. Words are stuck in my brain and won’t come out…When I write words then I can let somebody know what I want to say.

    When I grow up I want to be a scientist.

    I also want no one to talk to me like a baby because I am very smart. Only I am unable to talk like you. Only boys and girls that talk get treated the correct age way.

    Some way or another I will make a machine that will talk for me and it may work in the water so we can learn about ocean life.

    When you see me in the future I will be a nominated award winning person who made a difference in this world.”

  • Mona Delahooke

    Thank you for sharing, Karen! Jace is so eloquent, and he is already making a difference in this world!
    I hope everyone coming to this page reads his autobiography–

  • gajendra kotesa

    society is reflection of our parental D N A .all expression in life at different level are bi product of environment and individuals .every thing can happen at any steps in process of life .child without conversation and verbal silence may show you certain excellence in any level of life span .here i mention one example hiding his name -student of mine at PSTE course for primary teachers at MOUNT ABU ,Rajasthan ,INDIA, his parent told me about his past .now that 18 yr old student loved me n every activity i gave he try to perform well .but his problem was stammering ,shyness and so he never spoke to any class mate .i was in-charge of Saturday co-curricular activities where students were allowed to organize activity like poetry ,small mimicry ,debate etc all students laugh at him .i took decision to gave him control of all activities.students remarks ,mimicry of his presentation but he took it as challenge and one day he came out as confident teacher ,now he is general secretory of DISTRICT UNIT OF P F A.HE WAS AWARDED BY EX PM I K GUJRAL FOR HIS KIND WORK FOR ANIMAL RESCUE AND CURE . so non verbal means ..non functioning not at all .

  • Lovely post, Mona. Superbly researched and elaborated!

    People often mistake communication as speech without understanding that there are more aspects to it… aspects that we often take for granted, like reciprocity, emotional sharing and mindfulness.

    This post will always be the need of the hour until people truly understand what autism is, and how non-verbal individuals really ‘interact’.

    My friend had written a post on similar lines. I hope you don’t mind me plugging the link here for you to read. Would love to know what you think:

    http://saiconnections.com/make-autistic-child-communicate/

  • mdelahooke

    Thank you so much Vishal. I appreciate your words and this is a wonderful article by your colleague! I will share it on my social media. I so agree, this is the point, communication is so much more than spoken language. Emotional sharing, reciprocity and non-verbal communication (and utilizing devices) are all communication!

  • Thank you Mona, for the appreciation and encouragement. We look forward to reading more of your posts 🙂

  • Sarah D

    In other words, they don’t need ‘extra’ support; they need *different* support 🙂

  • Shanni

    Casey, as a parent of a boy who can’t yet speak reliably, but does now type to communicate, I love your research. He indeed told us, (much to our surprise), that his “autism” is actually sensory/motor challenges, rather than cognitive dysfunction. Can’t wait to read your results. Thanks

Scroll Up