with technical contributions provided by Brooke Rea, SLP
As a Parent who has gone through this myself, I have had the pleasure of connecting with other Ontario apraxia families who are on the formal diagnosis journey. Here are some of my collected thoughts on how a family can prepare for their diagnosis appointment and also, how to proceed if things don’t go as hoped. I want to share those thoughts with you in case you see anything that you can apply to your own situation. If you have ideas on what can be helpful or if you are willing to share your own experience, please do so in the comments below – the more ideas we have on this, the better resource we offer our fellow families!
At this point, your journey may look like this:
- a SLP experienced in Childhood Apraxia of Speech has identified that your child demonstrates the observable characteristics that are apraxia
- you have decided that you will pursue a formal diagnosis (if you’re not sure, consider this.)
- your SLP is on board to support you
- you have booked an appointment with your doctor to discuss an apraxia diagnosis
I know that this appointment can be a big deal. If you are like me, you are feeling a big mix of emotions: hope, fear, worry, and maybe more than a little desperation about wanting to just be able to say, “this is apraxia” and move forward!
The biggest thing to know is that your SLP cannot make this (or any) diagnosis because of the Regulated Health Professionals Act: communicating a diagnosis is a “controlled act” that SLPs are not allowed (there are a number of controlled acts, this is just one). You need to seek out a medical professional for diagnosis of CAS instead of asking your SLP is not about any controversy regarding the diagnosis itself. In all other corners of the world, SLPs diagnose CAS every day. So while we’re stuck for the time being in Ontario, know that the Ontario Association of Speech-Language Pathologists and Audiologists (OSLA) has submitted a proposal to the Ministry of Health and Long-Term Care to change the guidelines. But, this change will take time. So until then, here are some ways to prepare.
In most cases I am familiar with, parents provide their doctor with some form of documentation from their SLP that details the SLPs observations and explains the need for doctor to complete the diagnosis. If your SLP hasn’t provided this, ask them. If they won’t provide this, ask them why and consider contacting OPPEN CAS for support (firstname.lastname@example.org)
Most often, SLPs are eager to communicate with the medical doctor as needed. Be sure to check with your SLP if there are any forms you need to sign in advance of your doctor’s appointment so s/he can communicate with them; like doctors, SLPs are bound by strict privacy legislation.
Many families find that the doctor(s) they are seeing have never heard of Childhood Apraxia of Speech, so showing up and asking for a diagnosis is likely to require a bit of an explanation. Be sure to be knowledgeable about these basics specific to Ontario in case you need to answer questions:
- SLPs in Ontario are not permitted to communicate a diagnosis of any kind. This is not true in any other provinces or in the USA where SLPs are the primary practitioner responsible for diagnosis of CAS.
- Medical doctors do not have the same limitation. They are permitted the ‘controlled act’ of communicating a diagnosis.
- Childhood Apraxia of Speech is a severe speech disorder characterized by a specific set of observable speech characteristics. The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (American Psychiatric Association [APA], 2013) uses the term verbal dyspraxia to describe this disorder and discusses it within the Speech Sound Disorders category, under the subheading, “Associated Features Supporting Diagnosis (reference: http://www.asha.org/Practice-Portal/Clinical-Topics/Childhood-Apraxia-of-Speech/ ) If your SLP has identified CAS based on these characteristics, you should feel confident in approaching your doctor for a diagnosis. Here’s a link to a list of characteristics for your reference.
- “Motor speech difficulty” or “motor speech disorder” is not specific enough to be the appropriate diagnosis. This is because these are umbrella terms; other diagnoses fall under these terms. Until you have a specific CAS diagnosis, you can’t be sure it will be treated by other professionals and educators in the specific and necessary manner
- ‘Suspected apraxia’ is only considered an appropriate label until sufficient assessment has taken place and typically once your child has turned 3 years old. Suspected apraxia is not an appropriate substitute for calling apraxia by name once assessment is complete and differential diagnosis is possible.
You might find it helpful to bring along the following handouts for your doctor:
- the OPPEN CAS articles on Ontario-specific diagnosis issues for reference
- copies of the practice portal info from ASHA explaining apraxia and information from CASANA in case the doctor is interested
I would also encourage you to be prepared to discuss the possibility of co-occurring issues, just in case. Having another issue doesn’t necessarily mean it is not apraxia because apraxia can (and often does) co-occur with many other diagnosis/disorders. But remember, when there is co-occurring Apraxia, we still need to treat the Apraxia so diagnosis is still very important!
The choice of when and whether to diagnose rests fully with the doctor you are visiting, but I do recommend preparing to communicate all of the reasons why you are pursuing this diagnosis and any urgency you feel. Reasons you might consider: will a formal diagnosis allow better access to public services, or services at school? Are you able to access a different kind of therapy with a formal diagnosis? Are you able to access funded therapy or grants if a formal diagnosis is in place? Do you wish to take part in research or more intensive therapy for CAS but need confirmation that CAS is in fact the diagnosis? Will formal diagnosis allow clearer communication with your child’s care partners? Or you may have more personal reasons, such as knowing what your child doesn’t have and that you didn’t cause it as parents.
What if your doctor won’t provide a diagnosis of CAS:
Be sure to walk away with a specific reason why this doctor does not want to proceed with a diagnosis, because you may be asked to explain their reasons if you pursue a diagnosis from another professional. (Honestly, I can empathize with medical doctors who choose not to diagnose apraxia because they really aren’t the appropriate professional to be doing this, but I sure love the ones who can pick up the slack for the mess that is SLP diagnosis in Ontario!)
Consider other doctors! If your family doctor declines to diagnose, ask about specialist referrals (Pediatrician and Developmental Pediatrician are some options that other families have pursued and been successful with). If a specialist declines, then revisit your GP; your family doctor may be willing – and is able – to do this diagnosis (especially if a specialist has assessed/ruled out other concerns and you are well-supported with SLP documentation).
Consider out-of-province SLPs! If you are near the the border of another province or the United States, you may be able to find an option close to home. There are also apraxia experts who are extremely experienced and offer apraxia-specific assessments. Two of the more common options for Ontario families are Nancy Kaufman in the Detroit, MI area and David Hammer at CASANA headquarters in Pittsburg, PA. I know this isn’t the most accessible option for everyone but it is an option if you need it. We have been to Nancy for an assessment and it was a wonderful experience – very reasonably priced, my son loved her to pieces and we walked away with an incredible assessment and heaps of advice to help shape our therapy path. Dave Hammer at CASANA headquarters is amazing too! His approach to CAS is much more eclectic and his enthusiastic approach with children is well-known. Both professionals offer video consultation prior to travelling to them in person, so you could try Nancy or Dave without having to commit the time and resources for travel.
Lastly, know that you have support! And, as a parent who has been where you are, I am rooting so hard for you and I know other parents are too. You have a whole community of parents and SLPs who you can access online – a great forum for Ontario issues is available on the Apraxia Kids Canada facebook group!
And, if you are struggling with getting a diagnosis or getting SLP support, please know that OPPEN CAS is here to support you too so please don’t hesitate to reach out!
Angela Muis (left) started her journey with apraxia when her son, Huxley, was diagnosed with the speech disorder in 2011. It has been a long and hard road but Huxley’s apraxia is now resolved and along the way, Angela found her calling and is currently completing her Honours Diploma in hopes of becoming a SLP-A/CDA.
Brooke Rea (right) is the founder of OPPEN CAS. She is incredibly passionate about professional and parent education and resources for assessment, diagnosis and treatment of CAS. When not talking or teaching, she can often be found reading about Apraxia, or Superheroes with her young family.