by Marge Blanc

                     When They're "In There" Somewhere!
                                                Helping your child retrieve the language he knows!
                                                                                                            Part 1

 
A language retrieval disability is a serious, and seriously-misunderstood, challenge!
Kids who struggle with this hidden difficulty are significantly debilitated.  They have language in their heads they can't get to, and people around them don't realize what's wrong!  When kids face a retrieval crisis and don't talk, they appear disinterested... or defiant.  They may even appear that they don't have the language in their heads at all.  Yet when such kids do talk, they use language that seems off-target or repetitive, and they may appear stuck in their own ideas... or defiant!

In this new column series, we'll explain what this means to you, and to your child with ASD.

First, let's take a situation familiar to us all - the "tip of the tongue" phenomenon.  We know a word we want to say, but can't for the life of us, find it when we want it the most.  It's only later, when we've relaxed our brain that the word pops into our consciousness.  We think, "Why couldn't I think of that word when I wanted it?"

As frustrating as it is, this "word-finding" difficulty is a minor inconvenience compared with the more serious form of language-retrieval issue our kids often face.  Yes, adults can experience it too, but it usually only happens after a stroke and left-hemisphere brain damage, in a condition known as "aphasia."  Sufferers are often so frustrated by not being able to get to the words they know, they give up.  We don't want this to happen to our kids!

Language retrieval, as a primary language disability, occurs in around 15-25% of our ASD kids.  But all our kids experience it at a less-severe level while they are developing language.  Because our kids' language is delayed, they all feel pressures to produce language - pressures that most typical kids never feel.

We don't want our kids to be discouraged in their brave attempts to communicate!
So what can we do?

The most important thing we can do is recognize that our kids are struggling with retrieval.  Secondly, we can understand what "language retrieval" is not.  It is not willful avoidance of correct language.  And, it is not "lost" language.  If a child has formulated it before - not just "echoed" or repeated it, but actually formulated it - it's an emerging part of his language system.  If you've heard it a few times, it's probably "his" and it's now "in there", in his head.

Our task is to help our kids access that language again, and to help them say it when they want to!

Yes, we know our kids are dealing with other challenges at the same time...regulating their bodies enough to talk at all, coordinating talking with other movement, motor planning speech itself, and forming the sound combinations of words.  Sorting all this out take a team of people who know your child well.  Your child's SLP will be able to help figure out which parts are language (language development or retrieval), and which parts are speech (moving muscles for talking).  If all this seems complicated to us, imagine for a moment how complicated it is for the children who are dealing with it!

Let's pause here for a moment and focus just on language retrieval, so we can really understand how it works.  Retrieving is "finding" or accessing language that has already been developed (please see the Natural Language Acquisition column series in previous issues of the Digest, or at www.communicationdevelopmentcenter.com).  We are not talking about speech development or speech access.  For now, we are just taking about language retrieval.

In my 30 years of work with children, I have not found any language challenge as misunderstood as retrieval.  It is a hidden challenge and often goes undetected; kids are seen as perseverative, set on only saying, or doing, what they want.

Hardly! Let's review a real life example of a girl I know to illustrate what I mean.

Colleen is a little girl I have known for the last year.  Her seizure disorder renders her self-regulation and her access to the language in her head difficult.  A year ago, at age four, Colleen could say some nice things when her regulation was optimal.  The following conversation took place between Colleen and Megan, her SLP, at one such time.

C       I'm a big lady
M      You are, and what a nice party you're having.
C       Megan sit in the middle, and Alex...wanna come with us?

But once her little brother, aged two, actually did join in, he demanded the clinician's attention, and Colleen's tenuous self-regulation was upset.  Instead of nicely-formed language, she would open her mouth, and all that would come out was screaming, or the over-learned and over-used, "No!!"  As things escalated and Alex didn't take "no" for an answer, Colleen reached out to her trusted clinician with ungraded pressure, "hitting" Megan and threatening the ambiance of the party.

Did Colleen still have the language skills to request her friend's attention?  Yes.  Were they "gone" once Alex entered the room?  No.  Colleen simply could not access them, or retrieve them, under stressful conditions.  Even after Alex was gently removed from the situation, Colleen's meltdown continued.  But after receiving deep pressure and regaining calm.  Colleen again exhibited her naturally sweet disposition, politely engaging her friend with a smile and her best language skills.

Did Colleen mean to scream or yell, "No!!" or strike out?  Should any of her reactions be taken literally to be what she meant to say or do?  Knowing Colleen over time, and under a variety of conditions, I truly don't think so.  Rather, kids who have primary language retrieval disabilities have only their automatic behaviors, their "defaults," available to them when they cannot access their best language.  If "No!!" is automatic, at least they have a word!  The child who has no automatic language at all is at an even greater risk of being misunderstood, as his scream and ungraded "hitting" are often taken personally.  When screamed at or hit, we often panic, and our own "default" patterns kick in!

We do have an alternative.  Future columns will go into this in much more detail, and we have lots to share on this topic.  But even now, faced with our own child's similar meltdown, we can apply what we have learned so far.  Think "language retrieval" during these challenging times, instead of worrying that your child has lost skills...or is being defiant!  Your child, in a retrieval crisis, will feel so much better when he hears you say, "I know you didn't mean that.  I know you wanted to invite me to play again.  I'm going to help you feel better now...then let's plan for the next time "Alex" joins our party!"

Your own little "Colleen" needs your help...in the form of understanding!  Until our next column, dear readers, know that you now have a solid starting place for that understanding.  All the best!
                                                                                            
Marge Blanc founded the Communication Development Center, in Madison, WI 10 years ago.  Specializing in physically-supported speech and language services for children with ASD diagnoses, the center has successfully helped scores of children as they moved through the stages of language acquisition.  Contact Marge and her associates at:
 
Communication Development Center
700 Rayovac Drive, Suite 200
Madison, WI 53711
lyonblanc@aol.com
 

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"Because our kids' language is delayed, they all feel pressures to produce language - pressures that most typical kids never feel."