Why do we call it “childhood” apraxia of speech? Isn’t it lifelong?

By Laura Smith|April 21, 2017|Apraxia, apraxia blog, CASANA, Childhood Apraxia of Speech|

Ever wonder why CAS is called Childhood Apraxia of Speech? Is it really necessary to have the word “childhood” in there?  Doesn’t it ostracize those who never truly outgrow apraxia?  Plus, isn’t it a lifelong neurological disorder? Why can’t we just call it apraxia, or verbal apraxia? You might be surprised to know the reasoning was more thought out than you might think.

If you’ve ever had these questions, Sharon Gretz, founder of CASANA, has answers!

I can speak to this issue from history and experience! When my son was diagnosed at age 3, the “disorder” was called “developmental apraxia of speech”. Over the years of developing parent support and ultimately CASANA, it became clear that many (including insurance companies) interpreted the word “developmental” to mean that a child would outgrow the problem. That all would be well if more time was given for speech development. We all knew that was a bunch of Bull#hi$! These children were not going to “outgrow it”.

Why is it necessary though to have the term “childhood” in the name?

When I incorporated CASANA, and with consultation with founding board members Kathy Hennessy and Mary Sturm we decided on the name “Childhood Apraxia of Speech”… So, this term signified that this problem has begun in childhood – at some point of childhood. In most cases, there were no known “causes”, however, a population existed in which we learned children with various neuro-developmental disabilities had apraxia of speech and also children whom had neurological events occur (stroke, injury, illness that caused a brain change). The “Childhood Apraxia of Speech” term was a cover for ALL of those incidents or occurrences in childhood. The more that various researchers heard of the  term, the more they believed that it did in fact – COVER – all children who, for whatever reason, end up with apraxia of speech.

So why do we use the terms juvenile diabetes, or juvenile arthritis, or childhood leukemia or any number of similar terms? We do that because the same conditions appear in adults, but yet, when they appear in children there are different ramifications that may not appear in the adult onset condition. Knowing this about someone, an adolescent a teenager, for example should mean something to a trained professional. They should understand that the clinical issues and/or appearance of the disorder or difficulty is likely to be different than if that client before them did not experience that same issue in childhood.

I can also say from a personal perspective that young adults whom have dealt with CAS, call “it” or its remnants whatever they want to call it. Most of them will say apraxia or speech apraxia. It is their prerogative of course! Why would anyone dispute that? And yet, understanding that they “grew up” with apraxia of speech during their formative developmental years, provides a different foundation than to say the young person acquired it as an adult via brain injury, damage, etc.

I was privileged to be the consumer adviser to the ASHA AdHoc Committee on Apraxia of Speech in children. Their published document began to change things for our kids in a positive direction. For the very first time, children with CAS were recognized as having a specific speech sound disorder which was different than other disorders and that their evaluation and treatment needed to be different. Do you realize this was only 10 years ago??!! Progress seems slow, I know it. But, if you were among those of us who have young adult children, you know that life is much better for you and your children than it had been even 10 years ago!!

Thank you Sharon for always advocating for our kids, looking out for their best interests, and ensuring a better future for every child who has apraxia!

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