Childhood Apraxia of Speech Interview, Part 2
Tuesday's post highlighted Sharon Gretz, the Founder and Executive Director of CASANA (Childhood Apraxia of Speech Association of North America). Today's post discusses the services CASANA provides, as well as possible causes and therapeutic suggestions for treating apraxia effectively in young children.
Stephanie: Please tell us more about CASANA and what services it provides and offers families.
Sharon: CASANA is a 501c3 public charity, governed by a board of directors and which provides multimedia information on CAS to families, professionals, and other members of the public. We do this through our Apraxia-KIDS website, the largest repository of apraxia information anywhere that receives 400,000 page views each month.
Several years ago, CASANA cosponsored the first childhood apraxia of speech research symposium with 25 international researchers. Additionally, the ASHA CAS Ad-hoc Committee Technical Report identified that the "limited evidence on treatment efficacy is one of the most clinically pressing needs in CAS research." In response to the ASHA Report, CASANA established its CAS treatment research fund to encourage pilot research studies in CAS treatment. We have just awarded our first treatment research grant and hope to award at least one in 2009.
Stephanie: Earlier we talked about what worked for your son, have you since seen other helpful methods emerge and be implemented over more recent years?
Sharon: The overarching principles needed for speech therapy for children with CAS are called the principles of motor learning. In a nutshell, one applies those principles to speech motor learning and these appear to be what benefit the children, regardless of the particular "name" for the method. The following variables are what is important:
- Frequency and intensity of practice opportunities. Skilled motor activity is acquired through repetitive practice. The SLP needs to maximize the number of practice trials in each therapy session and those sessions need to be frequent. Incorporating parents as therapy extenders is also ideal so that the child is practicing throughout their day. Parents need mentored in order to understand how and when to elicit practice. Observation of therapy sessions by parents is key! This is how they will know when to try to elicit a speech production from their child, how to get multiple repetitions, and when to back off. They will know not this by hearing a summary of what happened in therapy.
- Type of practice. Children with severe apraxia of speech would start with a small set of core functional words. When they practice one word over and over, then another word over and over that is considered mass practice and early on this may be helpful to get more success going. When the child practices their set of words, randomly, over and over this is called distributed practice and overall this is felt to lead to the best generalization of motor skill. So children severely impaired would benefit from both types of practice.
- Type, amount, and schedule of feedback. Early in therapy, the SLP who follows understands the principles of motor learning is likely to give pretty immediate feedback to the child about their accuracy and about their performance, i.e.: "Yes, that was it, you got your lips to pop" "No, you need more air in your cheeks. Puff up your cheeks, lips tight and pop them." However, as the child's speech motor system improves less immediate and direct feedback on performance is provided so that the child's system does not become dependent on YOUR feedback but the child's own system begins to take over and they can "feel" and hear when they have been successful. Visual, tactile, and verbal cues and feedback are very important, but equally important is cue fading.
Various methods exist and use the above principles for the most part. So whether it is Dynamic Tactile Temporal Cueing (a variation of what some may know as Integral Stimulation) or the Kaufman Method (a variant and expansion of Successive Approximations) or the PROMPT Method or the Multi-sensory Method, what seems to be successful is that the principles of motor learning are incorporated by the clinician and that the clinician is actually working directly on speech production.
Stephanie: As a professional, what would you like to say to both parents and therapists regarding apraxia treatment?
Sharon: Well, truly, after speaking with hundreds of parents and SLPs in the past decade or more, please, please learn about appropriate speech therapy methods. I switch between sad and angry when I continue to hear stories about children with significant apraxia who are receiving a cursory amount of speech therapy, not nearly the frequency and intensity that is most likely needed. I know we are all stretched by resource limitations, but let us dedicate ourselves to advocate for what these children need.
There is no way around the reality that these are the children that will need the individual, direct speech therapy. The ASHA Technical Report suggests three to five times weekly of individual therapy is appropriate for children with moderate to severe apraxia. The good news is that when this help is delivered using appropriate treatment methods, many, if not most of the children make great strides and over time need less individual therapy.
There is a delicate relationship "dance" that both parents and SLPs need to learn as part of the treatment process. Parents need to learn to place trust in their child's SLP while still using their discerning judgment, and the SLP must be dedicated to earning the parent's trust while being honest about the limits of their professional knowledge and experience with this population.
To the professionals, please do not expect to find the "answers" for how to provide therapy to these children in a box that you buy from a catalog. Therapy materials are just tools that can be helpful when applied by a knowledgeable clinician. Take the time to learn about motor learning principles which undergird most appropriate treatment methods for CAS.
Finally, this is going to be hard work, for the SLP, for the parent and most of all for the child. There is no quick fix. SLPs, you will need to expend more time and effort on this child. Parents, you cannot expect that the SLP alone is going to "fix" the problem. You have to be involved and help with practice and therapy carry-over. After experiencing so much failure in their speech attempts, that precious child needs to have faith in the process and in both of you. However, keep hope and faith that your hard work will pay off. The sheer joy of seeing the progress of which the children are capable is simply inspiring!
Stephanie: I have recently heard that there has been an increase in children diagnosed with apraxia. Have you seen this in your work and do you have any thoughts on why we may be seeing this?
Sharon: You know, this is hard to determine because of limited research, but at least a number of large outpatient facilities are reporting that they are seeing more kids with apraxia of speech. We cannot be sure, for example, if awareness has increased and thus more children are being appropriately identified or if there are actually more children with the disorder. I would like to think that CASANA has played a major role in increased awareness in the proper identification of these children. However, we also know from research that children are both misdiagnosed as having apraxia when they really do not (false positive) and that the diagnosis is also missed in children who really do have it (false negative).
While research and attention has progressed in the last decade it is far from complete and agreement of the core characteristics of apraxia is still being refined. Drawing from the ASHA Technical Report on CAS, possibly the key characteristics for differential diagnosis that seem to be rising to the fore and to which there is some consensus among researchers include:
- inconsistent errors on consonants and vowels in repeated productions of syllables and words;
- lengthened and disrupted transitions between sounds and syllables; and
- inappropriate prosody, especially stress
I'd like to emphasize again that every child with limited or unclear speech does not have apraxia! However, apraxia should be considered and appropriate evaluation, including a motor speech exam, should occur in order to rule apraxia in or out as a primary explanation for the child's speech production deficits.
Stephanie: I have also heard that there seems to be a link between autism and apraxia in some children. What has your experience been in this area?
Sharon: There are certainly some children who have both autism and apraxia, though we do not currently know how many children with autism may also have apraxia. Unfortunately, we do hear of situations where the child does have apraxia and this is eventually determined but the child's speech problems had been attributed to autism with no consideration as to whether or not there could be motor speech involvement.
It can be difficult to make a determination when a child with autism is essentially nonverbal and is unable to cooperate with a motor speech exam. Every nonverbal child with autism does not have apraxia! But some may, and so it is worthwhile that SLPs be thorough in their evaluations and be sure to consider motor speech disorder in any child with significant speech production issues.
It is not just with autism that apraxia of speech can coexist. The same can be said of children with Down syndrome who also have apraxia of speech. Quite often we have heard of limited intelligible speech being attributed to cognitive deficits when motor speech was not ever evaluated or considered. It is always worth considering and investigating whether a child has a motor planning or motor execution aspect to their speech difficulty.
That said it is also important to remember that each additional diagnosis makes treatment all the more challenging. Just because a child with autism has apraxia does not mean you abandon working on communication, language, and social relatedness skills in favor of apraxia type therapy nor should the professional ignore motor speech approaches that would help with speech motor planning skills. In these situations, careful planning needs to occur to assure that all aspects of the child's speech, language and communication deficit are addressed in therapy.
Another related issue especially for early intervention professionals is that just because a child has limited verbal skills does not mean they have autism! We have also seen children diagnosed on the autism spectrum who did not have autism. They could not speak due to severe apraxia and secondarily developed some behavioral characteristics from their frustration or had some co-existing sensory issues or had more overall global apraxia that made manipulating toys and their environment very difficult. We have also seen kids diagnosed as having CAS who really have autism, not apraxia! We need to become very knowledgeable about teasing out the differences and subtleties that exist! It can be very trying on the families who are struggling so hard to help their children.
Stephanie: Sharon, I would like to thank you for all the incredible work you have done for our field, as well as for children and families dealing with apraxia. It has been a delight to speak with you. With all the work you have done in apraxia research and education, what is your hope for the future and for all those faced with the diagnosis?
Sharon: Obviously, the greatest hope is to understand the causes of apraxia and to either provide effective treatment at the earliest possible moment or to determine a cure or prevent the disorder. Awareness and understanding of the challenges these young people face is very important to their future. I dream about teachers who understand, friends who understand, physicians who understand...
I would hope that sources such as private health insurers, government funding entities, and school systems would commit to providing the financial resources that can support the outcomes that we know are possible. I just see it as an investment. We know about the potential cascade of future ramifications when a child has a speech sound disorder like CAS. We know that we could prevent some of those negative ramifications through early, effective treatment. It is my dream that each child will receive the help that he or she needs and requires.
Our slogan is: Every child deserves a voice, and whenever possible, the one that is their very own. While this speaks to their speech capacity, it really means so much more. Children with apraxia deserve to be heard, understood and appreciated as well as feel their own personal power through self expression. Communication is perhaps the most important of all human qualities. If a child has the ability to develop intelligible speech, they should be given that opportunity. This is my passion and this is what CASANA'S work is about each and every day!
Sharon and I both hope that you have found this interview informational and advantageous. Please write in and share any feedback YOU have regarding this week's interview and/or YOUR experiences with apraxia.
More information on CASANA's work is available at www.apraxia-KIDS.org.