Seventy Five Percent Of Apraxia Cases Wrongly Diagnosed

by Isa Marrs

Recently, I have been getting an influx of children with the diagnosis of Childhood Apraxia of Speech (CAS). Sometimes the child actually has Childhood Apraxia of Speech. However, most often they are wrongly diagnosed.

There have been several studies over the past few years that have shown that when evaluated by an expert in Childhood Apraxia of Speech roughly 75% of children with the diagnosis are found not to have the disorder. One study even reported that out of 53 children previously diagnosed or suspected of having Childhood Apraxia of Speech, only 7 did. So a full 87%, did not actually have the severe speech disorder.

Neurologists Should Not Diagnose Apraxia
It feels as if every time I turn around there is another non-verbal 2 year old getting this diagnosis from a well meaning Neurologist. There seems to be many Neurologists who will diagnose any child who has a normal neurological exam at age 2 and is not talking with Childhood Apraxia of Speech.

I am not blaming the Neurologists for this. Most of the time, they are put in this position by Speech Language Pathologists who don’t feel comfortable giving the diagnosis themselves.

Unfortunately diagnosing this severe speech disorder is not easy. In fact there is no one agreed upon assessment tool within the field to make the diagnosis. Because of this many Speech Language Pathologists do not feel as if it is their role to make this call when in fact it is.

Expertise Matters
Of course the Speech Language Pathologist should have extensive knowledge of childhood motor speech disorders to properly diagnose and to treat Childhood Apraxia of Speech. If they don’t, a referral to Speech Language Pathologist who does is the more appropriate next step.

While the person who makes the diagnosis may seem unimportant, it really is extremely important.

A neurologist can rule out any other neurological causes for a severe speech disorder; however they should not be asked to make the diagnosis of Childhood Apraxia of Speech. They are not experts in speech and language disorders, only Speech Language Pathologists are. Neurologists have plenty of other areas in which they are the experts; this is not one of them.

This scenario is contributing to the over-diagnosis of this disorder.

Age Of Diagnosis Also A Factor
Another factor contributing to this problem is the age of diagnosis. A child should be at least 3 before they can be accurately diagnosed. Prior to age 3 the disorder may be suspected, but it should not be diagnosed. A lot can change between the ages of two and three.

Childhood Apraxia of Speech is a speech disorder which involves motor planning deficits of volitional speech. Until a child makes an attempt to speak we have no idea what is going on. We can suspect motor planning is an issue due to some red flags we look for, however a diagnosis should not be made too early.

Important Red Flags
Some red flags in infants and toddlers include; little or no babbling, drooling and feeding difficulties, limited intonation, and words used and then lost.
While these characteristics are not enough to make a diagnosis they are reason to be concerned and take action. A child suspected to have Childhood Apraxia of Speech should be treated as though they have the disorder even without a diagnosis.

Just because there is over-diagnosis does not mean that therapy should be avoided. With any speech disorder the sooner therapy starts the better the outcome.

When a child has Childhood Apraxia of Speech he or she may need 3000 productions of a sound combination or word to learn a muscle memory for that combination. So I am a strong believer that the more therapy a child is able to get, and the sooner they get it, the better. I would add to that, that therapy must be fun and doable for everyone. If someone in the equation is miserable something must change.

Stop Searching and Take Action
So if you are a parent of a young child who is diagnosed with Childhood Apraxia of Speech and you are searching and searching for answers and opinions, stop now. Find yourself an excellent Speech Language Pathologist with the proper experience and start therapy immediately.

While finding answers is important, getting the right therapy for your child is a better use of your time.

Sources noting over-diagnosis of Childhood Apraxia of Speech:
Stoeckel R., (2008). Childhood Apraxia of Speech (CAS) Differential Diagnosis and Practical Treatment Strategies, 8-9. Rye, NY

Jakielski, K J., (2006) Childhood Apraxia of Speech (CAS) Assessment and Intervention, 12-13. White Plains, NY.

Shriberg L.D, Campbell T.F., (2002). Proceedings of the 2002 Childhood Apraxia of Speech Research Symposium, 38. Tucson, Arizona: The Hendrix Foundation

Davis, B.L., Jakielski, K J., & Marquqrdt, T.M. (1998). Deveopmental Apraxia of Speech: Determiners of Differential Diagnosis. Clinical Linguistics and Phonetics, 12, 25-45.

 

{ 172 comments… read them below or add one }

Tania March 31, 2014 at 6:48 am

My son just turned 2. He receives 2 Sessions for speech and 3 sessions of PT per week. He pretty much has 4 words and some animal sounds. He has been receiving Early Intervention therapies since 7 months of age due to gross motor delays and torticolis. My question is why is it so difficult for him to imitate speech sounds? Why are the vowels such a challenge for him? He can’t say oo, oh, ee, ai… Pretty much his only vowels are ah and eh. He has not been diagnosed with CAS yet. He did have feeding problems but that has improved considerably and he has a gross motor delay and wears orthotics. My third and last question: when should I ask for a CAS evaluation? Thanks in advance.

Deepak April 2, 2014 at 4:18 am

My son 2.5 yrs old. A month ago I was surfing internet to find out the reasons of speech delay and I stumbled across Autism. It was quite new to me. Then, I started following the symtoms and started matching them with my son. He had most of them. Probably, because we let him grew that way. We threw him in front of TV, laptops and mobiles with loud music, rhymes. and given him lots of blocks to play with. But, never sat with him for an hour.

The moment we understood what autism is, we changed the routine completely and in a week we noticed that he was not much interested in lining those blocks or play alone. It was us who probably forced him.

We now get his diagnose done and doctor says he is in mild to moderate spectrum. We took lot of videos to explain how he behaves and to suggest us accordingly but in India no doctor really cares.

Symptoms why we think he may be a late talker or not much autistic: he can read easily (He learnt A-Z and 1-20 in 3 days), loves music, can stay 2-3 hours at dj, he does mix up with other kids (but tendency remain to be alone because he doesn’t understand the social rules), Memorize all the ways to our home, park, temple (I mean he knows where is he going and will give expression accordingly, he is very much attentive to surroundings ), he can say ‘water” when he is thirsty, he can say ‘juice’when he wants juice. he has good eye contact with everybody. He laughs, smile and cry. If he is in need of something he can go to anybody in crowd of 100s of people and ask for the help (Non verbal though, he will pick someones hand and will take to somewhere he needs the help). He has no problem if other kids are playing where he is playing.

Symptoms which suggests he may have mild autism, he doesn’t pay attention to what we are saying. Doesn’t react to his name always (2 times out of 10). He is very selective to what he wants to respond, for example if we say ‘take juice’, he will immediately turn back with smile and expanding his hands. but, if we tell him ‘look dog’ he would never look, not even if we say alound 20 time. Has 6-7 words so far which he uses to communicate. But, can sing 20 songs, 30 rhymes and play drum. Music draws his attention immediately (because music is all he has listen to b/w 15-30 months of age).

Just 2 days ago he was found extreme deficient in Vitamin D (6.49 ng/ml). We are very confused what should we do. We don’t want to wait and watch. We want to act to provide what is the best for him. Any suggestions…

Isa Marrs April 10, 2014 at 9:22 am

Tania,
Your son is a too young to give a firm diagnosis of CAS however a therapist can say it is “suspected” if he is displaying some of the signs. With all the other motor deficits he has it is likely that his speech delays are motor based. PROMPT therapy could be a beneficial therapy for your son if there are motor speech impairments. You might also want to increase his therapy to 3x a week. If you are working with a qualified Speech Language Pathologist she will make a diagnosis when feels confident.

Isa Marrs April 10, 2014 at 9:36 am

Deepak,
I definitely would put his nutrition first. This can make a huge difference in his development. find a good nutritionist who works with children who have special needs and make sure he is getting what he needs. Next I agree with what you have done. For a young child who is diagnosed with an autism Spectrum Disorder I recommend no screen time. Try to interact with him as much as possible. Establishing shared emotion and joint attention is crucial. It is also extremely important to get him high quality therapy. Some of therapies that could be beneficial are speech therapy, behavioral therapy, and occupational therapy. Be very proactive, now is the time!

Mary Ann Martorana April 22, 2014 at 12:04 pm

My grandson turns 3 on May 4. Before he was 2 we made the fatal mistake of seeking help from Alta Regional because he seemed to be having some issues that my daughter was worried about. He was almost instantly labelled as having autistic spectrum disorder and the hell began. The psychologist who made this “diagnosis” seemed poorly credentialed and rather fly by night. Most of the issues we were concerned about disappeared by themselves but my grandson has become more and more frustrated and cannot properly form or pronounce words. He tries mightily but his speech is basically not understandable although his meaning and intent is crystal clear and he will make himself understood through signs and pointing. He seeks out explanations of what things are and nods when he understands fully and have a conversation with you complete with expressive facial expressions and appropriate nods. We are also pretty sure he can now read some words and is fascinated with letters and numbers. The “experts’ refuse to consider that he may have been misdiagnosed and that he has many many of the signs of verbal apraxia. They keep assigning autistic features to him he doesn’t actually have and trying to treat him with Applied Behavior Analysis which causes him severe anxiety and frustration. Now at three, the school department is trying to bus him off to a nursery school for developmentally disabled children and trying to strong arm my daughter and I to force us into it. We want him evaluated by a speech language pathologist who is qualified and experienced with this disorder. Unfortunately my grandson only has Medi-Cal and it will not pay for a real expert to evaluate him and these so-called poorly credentialed experts absolutely refuse to consider anything for him but autistic spectrum disorder. We are very frustrated and sorry we ever got involved with these people.

Christine Zola April 27, 2014 at 8:56 pm

Hi my son is 22 months. We have a feeling he might have Apraxia. My son understands what we are saying. He can speak about 3-4 words. He speaks in Gibberish. He has been in early intervention now for 2 months. He gets speech twice a week, O.T. once a week, and as a teacher once a week. He didn’t point until about 19 months, and just started clapping last month. We’ve been finding we have had a lot of tantrums due to not being able to comunicate with us. We also do some sign language. It just seems like he is blocked… It is just so frustrating. Are these signs of Apraxia? He is a great eater BTW Thanks, Christine

Dheeraj May 3, 2014 at 1:36 am

Hi Deepak,
My son will be 3 next month and he does pretty much same what you described. He has got bit more words and vocab but he still uses limited words or two words combination. He does not frame any sentences as such. Please keep me informed with the progress of your son and treatment and therapy if you have started any.
Thanks,

sabrina May 4, 2014 at 6:51 am

Hello.
I have a daughter in the spectrum (diagnosed at 2yrs) and is going to pre-k and is getting Behavioral therapy after school but seems like she’s having little to no verbal skills. She also does not eat any solids nor puraded foods. Only liquids. She gags and vomits to any foods. And since she is non verbal, and does not eat, I suspect she may have Aproxia. Not sure how or who to go to, to have her evaluated, until your site. (especially after going to two pediatricians that dont seem to have a clue about her and her diagnosis) She recieves speech and occupational therapy but is very little therapy. Like 30 minutes twice a week. My question is, how much therapy should she get and how can I get more therapy for her? It seems difficult to get more therarpy since we’re now going thru the school district vs regional center.

Pamela Giraud May 4, 2014 at 5:27 pm

I am a speech pathologist who has been providing therapy to a child who supposedly was diagnosed with CAS about age 3. The child is almost 12 and has been receiving speech therapy 5x/wk/individual/30 minutes. The child uses spontaneous language freely and at this time only the sh and ch sounds are emitted laterally. I feel I have done all I can and do not think therapy is changing anything. I have been working with her for just about six years. Therapy is provided 12 months a year. She does have learning difficulties in the area of reading comprehension and written expression. Am I wrong or is the diagnosis of CAS still viable? She has no difficulty with oral motor movements even if she is modeling articulatory placements.

Isa Marrs May 13, 2014 at 4:02 pm

Mary,
I am so sorry to hear your story and your frustration.Something for you to talk to your school about is that even if they still feel that your Grandson has Autism, he can still have Childhood Apraxia of Speech. Getting high quality therapy for his speech disorder is crucial.

Isa Marrs May 22, 2014 at 5:32 pm

Christine,
While I wold love to guide you this is not enough information about your son’s speech to say if he could have CAS. Was the lack of pointing and clapping due to motor planning deficits? If so, it could point to difficulty with motor planning for speech however that is not always the case. If CAS is suspected by the treating therapist and you I would be sure he is getting the right kind of therapy. You also need to make sure that your therapist is experienced with motor speech disorders and has a good rapport with your son. It is possible as well that he is a late talker.

Isa Marrs May 22, 2014 at 5:38 pm

Hi Sabrina,
Twice weekly sessions for a child who is as impaired as your daughter is not sufficient. I would recommend talking to your SLP and asking her to make a request for an increase in services. Usually this request needs to come from the treating therapist. You might also want to find a therapist privately to supplement the services you are getting through the school district.
Good Luck!

Isa Marrs May 22, 2014 at 5:43 pm

Hi Pamela,
You are correct that the CAS diagnosis would no longer be accurate if your student no longer exhibits any of the characteristics of CAS. However I would strongly encourage you not to give up on the lateral productions of /sh/ and /ch/. These lateral productions negatively impact the overall quality of speech. It would be a shame for her to get this far and be left with these speech errors.
Let me know what you decide.

Pamela Giraud May 22, 2014 at 6:15 pm

Isa,

Thank you for your response. I have no intention on giving up now! We are almost family members. I administered a Goldman-Fristoe the other day and as she now has braces there is a distortion of /s/ and /z/ sounds (mostly lateral emissions). I also assessed auditory processing using the TAPS-3 and results indicate low scores in phonological blending and segmentation in addition to auditory memory skills. Results of the CELF yielded scores in the average range for all indices except language memory.
While CAS is no longer a legitimate diagnosis and she would be classified as speech impaired, I do not think I can professionally substantiate five individual, thirty minute sessions per week and an ESY. Am I wrong? How do I convince her mother this diagnosis is no longer appropriate? She feels my student is a CAS child and every academic issue stems from CAS. She even makes my student wear a medical identification bracelet which starts she has CAS. Any advice?

Respectfully,

Pamela

kate June 2, 2014 at 10:48 pm

Hi

I posted on here before, but just to ask a few more questions.

My son is four and has a severe delay in his speech, he can say 15 words now. Though as he is getting better at imitating words, I am worried that this will turn into echolalia.

For example, he does this occasionally, but when I tell him “out” and I point to the direction for him to go to. He would then look at and say “out”, point to the direction I want him to to go and then he would go. When he hears the word “out”, he confuses this by the word “ouch”, so he would then say “ouch” and hold onto his head, like his head is hurting. Also, when I tell him off and I say the word “no”, he would then reply back “booooo (no)”, shake his head and wag his finger.

Sometimes when I sneeze and say the word “AHCHOO”, he would then say “ACHOO too”. When he watches a programme on TV and he loves using gestures, if he sees a character folding his arms, he would fold his arms too.

This is not repetitive, as he does this rarely. But are these the example of echolalia and echopraxia? Is this typical for my son to do? I am worried about autism as my son would most probably get a diagnosis.

Also, my son has been using a lot of jargon, even when “conversing to me”, just to add the words he currently uses are not clear. Is this because of is delayed language that he is using a lot of jargon.

Thanks.

Rajani June 3, 2014 at 9:03 am

Hi Dheeraj and Deepak,
My son is 2.5 years old now and he is also speech delayed. He was exposed to so much of cartoons and suddenly at 2.2 years I realized tht he was going around talking(unintelligible) the scripts of Dora. Immediately I switched off all cartoons for him and started playing and talking with him more. Now he sings quite a lot of rhymes (mostly clear) but still uses single words to ask for his needs. He is struggling with word combines but sings rhymes, this is puzzling. otherwise he does have eye contact and responds to his name.
Please let me know how to go abt with his speech devt.
Thanks,

Isa Marrs June 18, 2014 at 2:57 pm

Hi Pamela,
As you know children with CAS often have other language and learning issues associated with the disorder. Unfortunately I can’t help with school services because I don’t know what you can and can’t do when it comes to school services in your district. I know ESY is used to prevent regression. Will she regress without summer services? I always feel that you need to give as many services needed to meet the child’s goals.

Isa Marrs June 18, 2014 at 4:41 pm

Hi Kate,
What you are describing does not sound like echolalia as children do need to imitate in order to learn. In regards to Autism, if you have concerns, I would strongly recommend getting an evaluation as the earlier the diagnosis the better the prognosis.

Meg July 2, 2014 at 9:17 pm

My son is 4 1/2 and has been in many therapies since 8 months old. My son cannot chew and has extreme gag reflex extending to the center of his tongue. His doctors, many specialists, and OTs PTs just want me to give him pedisure and rub a brush over his mouth which is chaos and mostly ends with him crying and gagging and honestly making things worse. He has never been given this diagnosis just sent home on our way with pedisure and told to blend foods until he starts performing chewing motions then increase texture. Well I’ve been doing this for years now with no success in my child chewing. I’m so frustrated with our doctors and angry that they will not do more to help him!! I’m afraid he will end up being tube fed the rest of his life. Single mother who is crying out for help for her son!!!

Isa Marrs July 3, 2014 at 1:50 pm

Hi Meg,
I am so sorry to hear about your frustrations! Has anyone ever used a motor based feeding approach with your son. He may need to be directly taught the steps required for chewing. Using sensory strategies to address a motor based feeding disorder will get him no where! I suggest seeing a feeding therapist who is experienced with oral-motor feeding therapy.

Kelly July 17, 2014 at 7:58 pm

My son just turned 3 June 29th. He will talk and sometimes tell you stories about say my dad for instance, and all that you will understand is Papa. But, he knows exactly what he said. He also gets very frustrated when he wants something from me or his father and we don’t know what he is saying. It’s so bad sometimes he throws fits because we don’t understand him. He had a frenulectomy at 6mos. and tubes in at 1 2/2. His hearing tested fine after the tubes and was just in for a check up a month or so ago and they were still in and looked good so we know he can hear. He is very smart. When you ask him is body parts, eyes, feet, ears, nose and even his hair he can show you. you ask him his name he can’t say it. He can copy drawing a line or a circle no problem. We have been working with the school district as well as a speech therapist until this last Feb when the speech lady let us go. We continued working with the school district and they recently redid his IEP and he did not qualify in the speech area and just barely in the social. The reason they said he didn’t qualify in speech is because he was able to communicate his needs to us one way or another. He is starting preschool in the fall and I’m worried that he’s going to have major issues because they aren’t’ going to know what he is saying or wants.He just had his 3yr old check up yesterday and the dr was very concerned that he was released in Feb from speech at the clinic. She made a referral to rehab services located at the local hospital and they called right away. We were seen today and she gave him a diagnosis of Apraxia. After reading as watching videos of other children his age I’m still up in the air. I’m happy at least we have a direction to move in and someone is once again working with him. But, after reading this article I wonder if he has it or not. He has words but only simple ones; mama, daaee, for daddy, papa, cu for cup, kee ca for kitty cat, he calls the garbage truck eeww, eesee for please, okee for ok(this is a new word for him in the last 2 weeks or so), cow, caa for car and maybe a couple other words are all he says. The rest of his talking just sounds like a bunch of babbling. . . . .

Isa Marrs July 22, 2014 at 1:32 pm

Kelly,
I am happy to hear that your pediatrician made the recommendation and that your son is receiving therapy once again. Most often children with CAS don’t babble however without hearing your son’s speech it is impossible for me to give my opinion. Regardless, with so few words, it is important that he receive high quality, intensive, individual speech therapy. Please let us know how he progresses.

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