Ages and Stages, Speech & Language, Uncategorized

Apraxia & Down syndrome, Part II

DSC00555Following my post on CAS and children with DS I read many comments and received some insightful questions. I’m going to paraphrase some to help clarify some of the information provided.

Are you saying that children with DS don’t have CAS?

No! Children with DS most certainly can have CAS. However, from my experience with literally hundreds of children with DS, the incidence of this specific speech disorder is very low. By and large I see children with multiple issues that affect spoken language. Here is a classic example of what I see:  

John is a little 4-year-old boy with DS and a history of reflux, 3 sets of pressure equalization tubes, and moderate sleep apnea. He has had his tonsils and adenoids removed surgically 2 years ago. While he doesn’t actively spit up any more, John is a very picky eater. John is very active and enjoys playing ball with his siblings. Actually, he likes throwing everything. John uses about 20 signs, but has only about 10 spoken words. Of those words only his family and close friends really understand him. He is able to imitate some facial movements and is able to mimic some sounds like p, b, and d when he wants to. He doesn’t have any k or g sounds. He has vowels like o and uh, but can’t do ee (like in me). Sometime John will say a word as clear as day and not be able to repeat it again. He has had speech therapy since infancy. John’s parents are frustrated with his slow speech progress and wonder if he could have apraxia.

Children with DS are children. While I would like every child I see to be a textbook case, they simply are not. John’s example illustrates that. Each child is uniquely, beautifully, their own person and this includes the way they acquire speech communication. The case example above may be common, but it is not the whole picture. This child may have apraxia or he may have a different speech disorder. The most important thing to keep in mind is that a one-time evaluation with a new SLP is typically not going to yield a diagnosis of CAS. Since CAS is difficult to accurately diagnose, several sessions may be needed to differentiate the type of speech sound disorder the child demonstrates.

My child doesn’t have the CAS label but the therapist treats it as such. The techniques she uses have been working, so does it matter if we aren’t “officially” diagnoses with CAS?

Good question. For speech therapy to be effective the SLP needs to treat the observable characteristics and understand the underlying cause of the difference. If a therapist  suspects CAS and progress with apraxia-focused treatment is documented, then continue to move forward in therapy. The purpose for official diagnosis is first and foremost in order to accurately be able to treat the disorder – so that the child can develop and use speech as clearly as possible. There are very different techniques used for CAS then other speech sound disorders. I’m not talking about materials or programs that can be purchased. Instead I’m referring to fundamental differences in the treatment approaches SLPs are trained to provide. A child with a phonological disorder may make slower progress in speech therapy if they are incorrectly diagnosed as having CAS.

Accurate diagnosis. Effective treatment. Improved outcomes. Why? Because there is no one in the world more important to you than your child.baby feet

Please continue to share your thoughts and critiques! More to come soon – Jennifer

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7 thoughts on “Apraxia & Down syndrome, Part II”

  1. This issue is near and dear to my heart and I have actually written a couple articles on CAS even though that was some time ago and I no longer blog. I have an 8 year old daughter with Ds and we are working under the assumption that she has CAS. She only receives therapy through school and I am very happy with her speech therapist. I tried to get a diagnosis several years ago through the a therapist with the local children’s hospital but the whole session was a fiasco and I never went back. Her speech therapist sometimes questions whether she really does have apraxia or not, but leans towards yes. We are using the Kauffman program with her and it is working well. Her speech has really started to develop in the last year or so. Before that, she was pretty much non verbal except for grunts, etc. Now she says many words that those who know her well can understand but not always. Articulation is still very poor.

    Your articles again make me wonder if it truly is CAS or something else. I wonder if I should try to get an official diagnosis again. The difficult thing, as I’m sure you understand, is finding someone who is not only familiar with working with speech disorders but also understands Down syndrome. That was a huge problem with the last time I took her to be tested. The therapist did not understand Down syndrome and much of what she did actually complicated the testing. It really was a disaster and makes me leery of trying again. It’s so frustrating.

    1. Debbie, Thank you for sharing your experience. It can be incredibly frustrating for parents going through this process.
      Very soon I will have an interview from a dear friend and colleague who specializes in apraxia (she just moved into a new house so I’m giving her some time to settle in). I hope this will give you more hope and possibly some direction.
      Jennifer

  2. Kayli has difficulty staying on topic in conversations, she “chatters” and loses articulation as she goes so I appreciated what you said about prepared language vs spontaneous. Her vocabulary is good! What always tickles me is her grasp of whole phrases and expressive idioms.. Kind of like whole word reading she learns a whole phrase! Thanks for taking the time…

  3. My 6 year old is being treated for CAS and ticks most of the boxes. She does not stammer though, which seems to be a common trait with many Down Syndrome anyway. She is making progress now using Prompt.

    1. Lyn, that’s fantastic! My friend and colleague Shelley used PROMPT with some of her kids with DS and CAS with good results. Happy to hear the technique is working for your little one!

  4. Jennifer, thanks for these insightful postings. Far as we know, to date, there are no data on the percentage of children with DS that may also have CAS. We try to share that the more diagnoses and other challenges a child has the more difficult the CAS diagnosis becomes, and yes, it may need to be something that is evaluated over a number of sessions or weeks before an SLP may feel clear on differential diagnosis. Clearly, just because a child is not talking or intelligible and has DS does not mean they must have apraxia. Conversely, just because a child has a down syndrome diagnosis does not automatically confer they do NOT have apraxia. Sadly, what we hear too often is that motor speech disorders are not even considered in many children with DS. Instead, the lack of speech or intelligibility is attributed to intellectual disability and/or language without a real clear exploration of speech motor skills.

    Also, just wanted to say that the experts we work with often say that if a child has a phonological disorder and receives therapy appropriate for CAS, that child typically still benefits. However, the reverse is not true. If a child really has speech motor planning and programming issues, apraxia, and receives a “purely” phonological therapy type approach or solely traditional articulation approach, they do not benefit.

    Thanks again for starting your blog and conversation!

    1. Sharon, Agreed. Many professionals do not consider CAS a viable option during diagnosis. I’m going to discuss compounding factors that make treatment for any speech disorder challenging. I do believe some benefits may result from therapy approaches used for different disorders although less so for children with CAS.

      Anecdotally I go back to a patient I swore was apraxic who was 7, verbal, but highly inconsistent. In the early stages the Kaufman was great, but as we advanced in treatment the phonological approach is what really improved this little one’s speech clarity.

      I guess what I’m trying to say is flexibility and openness is the key. Always be willing to reexamine the diagnosis and approach. Have a colleague watch you for a second opinion and be open to suggestions. It’s really about maximizing speech for the child.

      Thanks for your response! Jennifer

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