Ages and Stages, Speech & Language

Apraxia and Children with Down Syndrome

I’ve read many blog posts and threads on list-servs over the last year and apraxia is a hot topic. As I start our on this series to explain what apraxia is (and isn’t) my hope is two-fold:

  1.  My readers will understand apraxia and how it presents in children with Down syndrome
  2. Any negative emotions related to the term are relived and replaced with new perspective

 I’ve heard many different terms used for apraxia. Which one is the most accepted?

When labeling this speech disorder the preferred terminology is Childhood Apraxia of Speech (CAS). Other terms floating around include: dyspraxia or developmental apraxia, but CAS is the term accepted by ASHA and the Childhood Apraxia of Speech Association of North America (CASANA) and The American Speech-Language Hearing Association (ASHA)

What is CAS?

CAS is a motor speech disorder that is perceived as the child is beginning to learn speech. For reasons not yet wholly understood, children with CAS have great difficulty programming, planning, and producing speech movements. This is different from other speech disorders where the root difficulty is related to learning the sound rules of speech. The movements needed to coordinate speech are highly precise. Children with CAS, like children with Down syndrome, typically have a gap between their ability to understand and their ability to use speech to express themselves. However, the existence of this gap by itself does not indicate the child has CAS.

 I’ve read the description of CAS online and my child has every symptom. Every. Single. One.

webmdWelcome to the world of online diagnosis. Let’s break down some characteristics and explore them as they relate to DS. My comments are based on multiple studies looking at the language development of children with Down syndrome.

  • First words are late, and they may be missing sounds: Children with DS acquire 1st words later and the number of sounds may be limited.
  • Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds: Children with DS do this too with more frequency.  This is also a marker for phonological disorder
  • May have problems eating: Problems eating are more likely related to early cardiac or gastrointestinal issues (like reflux) in children with DS than a sign of CAS
  • Makes inconsistent sound errors that are not the result of immaturity: This is a big red flag for CAS. However, as speech is emerging it may be difficult to discern a patterns of error by parents.
  • Can understand language much better than he or she can talk: This goes for about 85% of the children with DS on my caseload, so I don’t emphasize this characteristic when trying to rule-out CAS.
  • Has difficulty imitating speech, but imitated speech is clearer than spontaneous speech: In children with DS, as rate decreases clarity increases as a result of underlying language issues combined with articulation challenges.
  • May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement: Another red flag for CAS; however, it may also exist when children have word finding problems or stuttering.
  • Has more difficulty saying longer words or phrases clearly than shorter ones: Very common in DS and is a function working memory and expressive language needs.
  • Is hard to understand, especially for an unfamiliar listener: Many children with DS are understood by family or friends – the school principle…now that is another story. This characteristic is very common in young children with DS especially with delays in expressive vocabulary.

                   How frequently does CAS occur in children with DS?

apraxiakids2In reality, the prevalence of CAS is low, an 3-5% of diagnosed speech disorders. There aren’t numbers for CAS in DS apart from a 2006 survey  by Dr. Libby Kumin, which places diagnosis around 15%. Based on my own anecdotal, clinical experience, I believe the incidence is lower than the results of the Kumin study. This is because some of the survey questions that target features of CAS could also describe characteristics of other speech disorders. Not surprisingly, this results in apparently discrepant results. Dr. Kumin discusses this saying, “It is interesting to note that the responses to the questions relating to ability to produce a sound word or phrase correctly sometimes, but not at other times were very close [an indicator of CAS]. Yet, when parents were asked whether their child’s speech errors are consistent, they responded that they were consistent [an indicator of other speech disorders].” Surveys that target parental perception are helpful, but not always reliable indicators of a specific disorder.

My child is 3-years-old with Down syndrome and was diagnosed with CAS. I know it must be right. He doesn’t talk much at all – maybe 10 words! We’ve tried everything and nothing has worked. I am so upset. Will he ever talk?

While this example is fictional, I’ve heard it time and time again. My heart breaks for parents who feel this diagnosis is like a sentence to a non-verbal life. Let me be clear – if your child is young (under 5) it is unlikely that the diagnosis of CAS is accurate. In children with DS the acquisition of language and learning to speak clearly takes time. A lot of time. As children gain a skill we expect them to move onto the next step right away. We forget that skills need refinement. We’re able to accept this for walking and handwriting, but speech… waiting for speech is somehow different. It’s more emotional. In an upcoming interview with an SLP whose specialty is apraxia, we’ll explore why early diagnosis of CAS in children with DS is very challenging.

9 thoughts on “Apraxia and Children with Down Syndrome”

  1. Great topic!!!! My son is 7, has DS and has apraxia, although the speech therapists in our state won’t ever write that on a report because they have all been taught that apraxia only exists in the absence of any other neurological condition. He has been working with a PROMPT expert for the last year and it has really been the only thing that has given him steady improvement. I pressured his SLP into giving him a formal assessment for apraxia and there were no doubts by the results that Noah has apraxia (which I knew by my own research). Yet his SLP warned me that he was not even supposed to give Noah the test since he has Down syndrome. Oy. But PROMPT therapy is very appropriate for apraxia, so I know he is in the right place. I have also found the Kaufmann cards to work very well with Noah, but it is the PROMPT therapy that I see the most gains with.

  2. Thank you for the chance to grow in my own knowledge. After many years of not being able to put a name to my son’s speech challenge, I now understand more. My son is a 25-year-old young man with Down’s Syndrome. During his many years in the school system, no one ever called his speech delay an Apraxia. This may be because they didn’t know then, or the relationship to Down’s was not made yet. I may be wrong, but many of the signs are there. I was told by his speech therapists there was a block in the speech area of his brain, that made it hard for him to express himself verbally, but still the word Apraxia hasn’t even graced any IEP reports, etc. Through the years, many of the speech therapists and teachers told me what I already knew. He understands more than he can communicate. You can see the little wheels of his brain turning when he is trying to communicate, or when something is just clicking. 🙂 There is more to his story though. It was determined in his last few years of transition classes, that he also has a mild Autism, only evident in mild sensory issues, and his mild OCD. The OCD is a blessing, because of how he keeps his room very organized. 🙂 Yet, there are little moments when this does get to me. I understand though, because he probably got his OCD from me. 🙂 I don’t know, but these may have a part on their own in a diagnoses of Apraxia. It was only when trying to find out what Apraxia meant, and if there were any connections with Down’s, that I found your information. A friend has a little 2 year old with an Apraxia. She was a premature birth, and is going through Speech Therapy. After reading the definition did a light bulb go off in my own brain. Now that Justin is done with the school programs, he seems to have grown in trying to make conversation. However, there are times when even I can’t understand him, because he is trying to use words he can’t pronounce well. Newer words perhaps, than he has used before. 🙂 He also stutters and mumbles. He is getting better in repeating himself for me, but not all the time. Through the years, many speech therapists told me his speech was one of his strengths. Words he knows well, he pronounces very clearly. I believe Justin’s growth is only because I continue to try and help him in this area. Perhaps something in Justin’s story can help more people understand the need for continued resources in this area for our loved ones. Perhaps this will even enlighten professionals. While I may be wrong in coming to my own conclusion, it just seems to fit. However, I do believe that Justin can continue to grow. Thank you again, for your information.

  3. My friends little boy is 2 and has Down syndrome. He was speaking really well when one morning he woke up and had non of the speech memory. He also will only walk supported now and was fine before.he has been diagnosed with apraxia. Does the lack of walking or the backwards progression of walking/talking make sense?

    Thank you,
    Concerned friend

    1. What you’ve described is not apraxia, especially if he walked before and now does not. Any sudden loss of skill should first be examined by a pediatrician. Causes for gross motor skill loss may include atlantoaxial instability, seizures, or stroke. Even with autism spectrum disorders there is rarely a significant regression with motor skills (e.g. walking now dependent on assistance to ambulate).
      This is not a typical “DS thing” either (walking to no walking; speech to no speech). Second opinion by an MD suggested.

      Good Luck!

  4. I think perhaps in boys with DS who have a strong family history of CAS, the diagnosis can be made before age 5. Also, I would think that it would be pretty uncommon for a child to have an otherwise undiagnosed cardiac or GI issue at that late age causing feeding difficulties… Perhaps you’ll be answering this in subsequent posts, but from your experience, do you think that the incidence of CAS in DS is the same as in the general population? I agree that perhaps it’s somewhat overdiagnosed, but perhaps that’s a small price to pay for the increased awareness which has taken so long to achieve…..

    1. Elizabeth – Thanks for your feedback! I don’t think it’s impossible to diagnose before 5 years, just unlikely. And believe it or not it is more difficult if the child is totally non-verbal.
      With regard to feeding issues, I will address in a post soon. In CAS the issues aren’t new either – historical feeding difficulties.
      I do think the incidence is similar to the general population, and perhaps slightly higher. And I agree over diagnosis happens as awareness improves. My goal is to increase the awareness of what CAS looks like in children with DS, what works in treatment, and what pitfalls to avoid.
      The Kumin survey was a great start! Now research needs to look at how we diagnose CAS in children with DS and the consistency of this diagnosis across clinicians.
      Thank you again – your comments are really insightful! Jennifer

      1. I would like to add that my son was in a Parent Infant Program from about age 1-3 years old. I concentrated on keeping him alive for open heart surgery and getting well enough to be in public his first year of life. He was diagnosed with Down’s at 2 months old and a heart condition. Still, I constantly talked to him, as he would coo and goo back at me. 🙂 When finishing the Parent Infant program, he was speaking 75 words clearly. I was told this was on target for a 3 year old with Down’s. He seemed to be just taking off in vocabulary use. He was walking at 20 months, a year after his heart surgery. He did puzzles well etc. However, when getting into a school program, he began to shut down. In part it was because he wasn’t in his comfort zone, and it had a lot to do with him being shy. There was also the way teachers were handling him. In particular, he totally shut down in kindergarten due to how he, and other children, were being treated. By the time I knew what was going on it was too late, the damage was done. His first grade teacher was wonderful. She knew within two weeks my son was shy, and that he had been negatively forced to speak. As he gained more trust in his teachers he began to open up more, but still there was a delay in communicating verbally. In part it was because he would just start to get to know a teacher and the classes were changed to different schools, different teachers. He would be fine at home and use his words at home, but not in school. As he got older I knew he was having trouble forming sentences, but many didn’t believe me that he was using words at home. I asked question and researched what I could then and asked about Autism. There was no one suspecting this at the time. It wasn’t until later in life, while in high school, that a speech therapist told me there was a block in the speech area of his brain, preventing him from being able to communicate at a higher level. That it could be from a mild spectrum of Autism. He wasn’t diagnosed with Autism until around the 11th grade. There’s a big part of me that believes he would be farther than he is now at age 25, if he were diagnosed at a earlier age as having an Apraxia. It’s wonderful that the world was in a better place, with regards to resources and education for parents and children, in the 1990’s than they were in earlier years. Still, it’s so frustrating that more professionals, involved in their education, don’t listen to what a parent is saying. It’s also a shame that many teachers, and school associated therapists, don’t get the chance to really know a child, because they are sent all over the place in the special education programs. The other thing is many parents don’t have the means to keep their child with a Pediatrician that is well versed or specializes in the unique special needs of those with Down’s Syndrome, or anything else of sorts.

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