Because diagnosis is a bit of a ‘black hole’ in Ontario, parents frequently contact us to ask if it is important to get a formal diagnosis, or if it’s ok to just carry on without one. Ontario SLPs cannot communicate a diagnosis but are the most trained when it comes to identifying the characteristics of CAS; Doctors can diagnose CAS but are often without the training necessary to identify it. What a pickle!
Diagnosis of CAS in Ontario: why it’s tricky, why it’s important, and why we need to do better!
While many Ontario-based SLPs work under the premise of “motor speech disorder”, Brooke Rea (our founder) feels very differently:
“Personally, I encourage families to pursue a formal diagnosis when it’s appropriate, and will advocate/provide support for this when appropriate. The reasons I encourage a diagnosis are: 1) validity and clarity of the issue 2) clearer communication 3) access to accurate information 4) access to a network of people and resources 5) decrease of parent/family guilt. There is nothing wrong with saying “motor speech disorder” (MSD) but it’s a vague term. CAS is a very specific term and people identify with it more clearly. The research and treatment are specific. And I think specific is helpful to families and children. Other issues and diagnoses can fall under MSD. So when a child presents with CAS or suspected CAS (sCAS), I like to be clear and specific. I challenge all SLPs to support families to seek formal diagnosis when it’s appropriate. Only then will we be able to accurately advocate on their behalf, raise awareness, and further the research.”
CASANA reminds us that:
The speech therapy treatment for childhood apraxia of speech is different than it is for most other speech disorders or speech delay. In addition to the speech therapy methods being different, children with apraxia of speech, at least for some period of time, require more speech therapy than children with other speech problems in order to improve their speaking ability. Without proper diagnosis, children are at risk of not receiving adequate and appropriate help (retrieved from : http://www.apraxia-kids.org/
guides/family-start-guide/why- is-accurate-diagnosis- important/, May 30, 2015)
Some parents are concerned that a diagnosis will affect the way their child is treated at school, but in most cases it can be helpful to know there is/was a history of CAS as it can pop up in other speech, language, and/or learning areas later on. Reading, writing, spelling, pre-reading skills (i.e. phonological awareness skills), and sometimes higher-level language concerns can be impacted by CAS and need to be monitored. CASANA reports on their webpage: Children with CAS often have poor oral and written language and narrative skills. Social and pragmatic language skills also necessarily suffer when there is a deficit in narrative skills. Many children with CAS have had less opportunity to participate in conversation due to their severe speech production challenges and thus have difficulty developing these important skills (retrieved from: http://www.apraxia-kids.org/
guides/slp-start-guide/ education-issues-for-children- with-apraxia/, May 30, 2015)
Furthermore, without diagnosis, how are we to further the research? Currently, any child with a diagnosis can be entered into the CASANA research registry (http://www.apraxia-kids.org/
library/apraxia-research- registry/). This information is being accessed by authorized researchers to compile preliminary research that can help find more answers about CAS causes, risk-factors, prognoses, etc. This registry also allows families to participate in research studies, and to connect with families similar to them. Information is helpful, but accurate information is powerful!
In closing, we hope that professionals accessing this site will consider advocacy for formal diagnosis when it’s clinically appropriate. OPPEN CAS would be more than willing to assist any SLP unsure of how to begin, contact us. We also hope that parents who are considering seeking a formal diagnosis will feel empowered and supported to do so. OPPEN CAS is equally available to assist any parent unsure of how to proceed, please contact us.