Gifted Issues Discussion homepage Forums Twice Exceptional Anyone with child that has Apraxia of speech?

cc6 ... I know it sounds like I'm against the diagnosis itself but I am not. I am open to it ... I just want to make sure that's what he really has and want to explore other possibilities as well. The diagnosis was based on a 30 minute evaluation. And when the diagnosis was made a lot of things I told the evaluators was taken out of context (I realized it reading the reports afterwards) ... such as when I mentioned he counts objects and recognizes numbers to 20 ... the report said ... "repetitive behaviors - rote counting" ... and other things like that. That's why I don't want to just go with that diagnosis and be done with it. Especially when it doesn't really help with the fine motor skills issue. The recommendations were mainly behavior therapy when what we're seeing is figuring out what is best Speech and OT for him. I hope that makes sense?

Other than that, I don't have a problem with my child being Autistic if that's what he is. I find people having a lot more patience with him when I disclose it (like Emergency room at the hospital, etc.) ... it's like a magic word that suddenly gives more patience to everyone around.

But the lack of certain movements of his mouth (along with serious lack of skills when it comes to his hands) ... there's definitely something that needs to be checked out. When I mentioned it to the speech therapist he had with EI her response was have him make faces into a mirror (he smiles / laughs but does not stick his tongue out at all (tried like once!), doesn't make any other faces like other kids do, can't pucker his lips.

He had a small birth defect where there was a small hole in his bottom jaw bone. So it just makes me wonder, if there was a defect in his bone structure, no matter how small, how do I know for sure there isn't something wrong with the muscle structure as well?

Mk13, I think you're doing all the right things - researching what you can, thinking through the evals your ds has already had, asking questions, digging for a deeper understanding of what's up. FWIW, I think that it's a good idea at this point to seek a really thorough eval again, from either a pediatric neuropsychologist or a developmental pediatrician.


Our neuropsychologist has a chart that shows how symptoms overlap between autism spectrum disorder, developmental coordination disorder, and ADHD - there is *quite* a large amount of overlap, but each diagnosis also has very distinct characteristics. How those characteristics play out in any one child is going to be very unique and individual, but there are markers that are used to differentiate between ASD/DCD/ADHD.

Our ds13 who is dyspraxic has some symptoms that could fall under an ASD diagnosis, and he's had a few people here and there over the years suggest that he might be on the ASD spectrum. Two of the people who've wondered are friends of mine who live far away from me and who are parenting children who have Aspergers. We primarily communicate via email, and when they listen to my descriptions of what's up with my ds there are times when they see commonalities in things that their children have experienced, so they naturally wonder, hey, that sounds like Aspergers - because that's what they know. DS also had a counselor he was seeing a few years ago who wondered if he might be on the autism spectrum - burt she was a counselor, not a psychologist or psychiatrist who could make a thorough diagnosis; she was a counselor who had a large percentage of her practice made up of children with Aspergers and who had never worked with a child with DCD before. When she raised suggested we have our ds go through an autism spectrum eval with her office psych, it coincided with the same timeframe our ds was already scheduled to go through an updated eval with the neuropsych who he'd seen for his original DCD diagnosis - so I had an opportunity to get her input on the situation before putting ds through yet another eval. Our neuropsych also diagnoses ASD and ADHD, so she showed me the part of ds' eval that showed clearly, to her, that he is *not* on the autism spectrum.

It sounds like the eval you had previously was brief (30 minutes) - you might post what surveys or criteria/scales/etc were used to diagnose and compare that to what other parents here who have children with ASD diagnoses had included in their children's evals. My gut feeling is that 30 minutes with only parent input and the brief in-office-30-minute observation by a dr/psych isn't enough to diagnose autism - but that's just me. My ds' diagnosis of DCD was much more involved and has also evolved over time as he's grown and we see the different ways it impacts his life.

Last thing - re the sudden development of speech out of nothing. My ds didn't talk, didn't babble, didn't really make sounds much at all for the first three years of his life, then overnight he started talking in complicated, complex sentences. Like a previous poster mentioned, at that time, we thought he was just a kid who's personality wanted to know fully and completely how to do something before he tried it. There are kids like that; maybe that's your ds. OTOH, making no sounds, no babbling, then suddenly talking as if he's mastered it - those are also symptoms of ds' DCD.

Which doesn't mean your ds has DCD, or autism, or anything. I do think, in your shoes, I'd be questioning and researching just as you are.

Hang in there!

polarbear

MK- I understand, I just meant that aut dx allows for all therapies, and you would qualify for the fine motor and or gross motor. No matter what the childs Dx, he should receive appropriate therapies etc for whatever he presents with.

I forgot to add that my DS also seemed like it was a processing thing- like he wanted to say it but didn't? idk. I thought maybe "auditory processing disorder" but no that wasn't it. I remember also becoming obssessed with idea he had something wrong with his tongue of all things! As a parent, early in any Dx, you kinda go thru the motions until you come to what you feel really fits... And you'll find that space too, and no matter what Dx your child ends up with (or doesn't), what really matters is that you are giving him ways to cope with whatever things he does present with. Do I make any sense?

*I'm going to study DCD more myself b/c this is also something sounds much more like my DS than autism. He had 2great years of outside NPA service for OT- mostly gross motor ie balance coordination, core muscles, but also the intrinsic muscles his palm. He still gets sooooo tired crampy from writing. He really improved alot, and also b/c I did what was suggested at home and just really encouraged all motility etc..

He's still not going to be a star athlete- then again haha who knows? But he's not so clumsy... tripping over his own feet. Actually he is super fast and a natural hurdler- go figure! (i've had 2 different times where pro's approached me re: his natural gait for it LOL who KNEW their was a natural hurdling gait? wowza! hahaaa)

Also, MK- I hope I not come across as suggesting your kiddo is Autistic? I have no clue. And so I am sorry if I came across that way, not ever my intention. Heck, I'm STILL trying to figure it all out, even while being accepting of DS- how does that even make sense either? %/

cc6 - no worries! I am glad to hear everyone's opinions and experiences! To me that's worth more than anything any doctors can tell me. Quite honestly, when an outsider looks at my son, I have no doubt they must see him as autistic. And I was the one initially seeking the diagnosis because I thought it fit. But at that point I had no idea about all the other disorders that could mask as or coexist with ASD diagnosis.

polarbear - thank you for your thoughts here and on my other somewhat related thread I started couple days ago. Just wondering, when your son was little, was he seeking a lot of deep pressure input? DS loves to be squeezed and loves to rub against us a lot, especially with his face. Just like if you imagine a cat or dog would do. My husband and I joke about it that we have our little human puppy . I wonder if he does it to feel more sensation in his face maybe?

I just find it incredibly frustrating to see how my son is supposed to be getting this "one size fits all" treatment and I KNOW it's not what he needs.

thank you! Looking at the diagram, I would think he'd fit more in the Dispraxia/DCD category than Autism but it's really a tough call to make when it comes to the imagination and social areas, that's something that will just have to sit tight and wait till he gets a little older.

What is "one size" about what he's getting?

FWIW, I see it as Mum3 does; to me (over the internet, where one cannot diagnose anything even if one were qualified), your DS sounds like gifted/autistic. Many or even most autistic people have comorbid conditions, so the combination gifted/autistic/apraxic is certainly possible, as are any other combination of exceptionalities.

Have you been to a neuropsychologist yet? Or the kind of autism clinic that can do a really thorough workup? You are spending so much energy fretting over the diagnosis. But it is very reasonable to treat symptoms and work on language skills and behavior while seeking further information.

DeeDee

MK13, I think some of this may not become clear for a few years, possibly until he's in school, and that was the upside of the older approach where they would not give a diagnosis to higher functioning kids until 6-7 (well that was the case here in Australia). The disadvantage of delayed diagnosis is that early intervention is useful and needs a diagnosis to get funded access...

I think the fact that neither of your kids are in school yet means there are things you just don't know about what developmental challenges, that you don't see as a real problem now, might look like later (if they are not addressed now). I do not mean that to sound at all condescending, which I am sure it does, but I couldn't think of a better way to say it. My intention is not to condescend, I am purely reflecting on the things I didn't know that I didn't know with my eldest child.

And I guess I should make it clear that I come from a perspective of: my child with Aspergers did not get diagnosed until 10 years old, partly because she is mild / very high functioning (and a girl), partly because of what I didn't know back then, partly because of all the other things I thought it might be along the way and partly because of all the things that I failed to take as red flags when she was small. When she LOVED to swim, was able to learn swimming with me 1:1 (by that I mean that I stood in the water while she self taught, but would not tolerate my instruction) but melted down over swimming lessons - I blamed the lesson structure/teacher and pulled her out and kept doing "what works for us". When her first daycare/preschool experience failed - I pulled her out after 2 weeks, blaming the preschool (and yes there WERE issues, I wasn't completely wrong, I just failed to see my child's part in the problem until years later). I could write an essay on the stuff that I normalized along the way, and some of that normalization came from personal mindset, some came from the style of parenting books I chose to read (books like "Raising Your Spirited Child" for example did give useful strategies and added to my parenting tool kit, but they also reduced my inclination to see a problem with my "HIGHLY sensitive" child)... Along the way to Aspergers we visited SPD, CAPD, Dyslexia, EF disorder, Visual Spatial learner, developmental co-ordination issues etc... Until finally I started seeing that most of these disorders are absolutely valid conditions but I no longer believe that most of them are free standing conditions (most of the time), perhaps if you have just one, but especially when you have a cluster of them that they are more likely SYMPTOMS of a more global neurological delay or disorder, a disorder that makes sense of it all clustering in one child. When you have a child with sensory issues, attention issues, processing issues, social issues and and and... then you need to start asking "What pulls all of this together?".

And it sounds like your child really does have major social issues (which you perhaps aren't perceiving that way yet because things are fine at home when it's just him doing his thing and having a nice time and learning lots of stuff that interests him). Again I am not a professional or an expert, but every time you try to explain why you think he is not on the spectrum I read and think "What you just described sounds exactly like a gifted child on the spectrum to me".

I agree that the speech therapist he's had doesn't sound that useful, that the assessment sounds poorly done (1/2 an hr shocks me, and I too have been pissed at things I have seen mis-interpretted in my kids reports). But I think the answer to that is to get a proper full assessment done by an expert you respect and then see where you go from there. And also coming back to the start of my post - it may be that he is borderline enough that you won't know for a few years, but the intervention you do now will hopefully make a big difference later - assuming of course that it's decent intervention!

the "one size fits all" comment was in terms of therapies we were recommended by the evaluation team that did the initial diagnosis and by what the school district is offering. His IEP meeting basically looked like this ... "oh, he has Autism diagnosis. So he qualifies for this this and this and will be receiving this this and this|" (part of which I declined and part we will be doing). But again, nobody addressed my concerns regarding the way he speaks and regarding the possible reasons behind his motor issues. If he does in fact have Autism but there may be a possibility of Apraxia / Dispraxia my understanding is that the approach to speech therapy is somewhat different in kids with Dispraxia. I just put him through 9 months of speech therapy that clearly wasn't working for him and he just hated it. The last couple of months turned into DS seeing the therapist (nice girl ... definitely not a bad person!), crying and repeating "bye bye! Go away!" over and over. With both boys all together, we've been through 5 speech therapists, 2 physical therapists, 3 OTs and 1 developmental therapist. Speech for both of them was a complete disaster. They would shut down and stop responding to the therapists (with the exception of the school therapist that DS4.5 has and who is the same person that will be doing ST with DS3 starting probably in 2 weeks through the school district).

As for the diagnostic eval he had, that WAS through a major Autism center. That's why I was surprised that they would come to a diagnosis after seeing him for such a short time. It was a team of therapists and a neuropsych I think who was watching from behind the wall. The therapists team was writing up the report somewhere in another room while the neuropsych was talking to me. He did say that DS has signs of giftedness as well as Autistic traits, he did ask about family history (a lot of the quirky things in both our boys definitely come from me as I was the same way as a little kid), my education, etc. And then basically pointed out that DS3 might turn out just like me. Then he left, the team of therapists came back and gave me their report, saying he has High functioning autism and in most areas ranked him 1.5 - 2 years behind. I pretty much felt like they were telling me he won't most likely talk and needs to learn to communicate through pictures and go to autism school. So I was leaving the place knowing that's just not my child! We will have another re-evaluation sometime before Christmas. So we'll see.

DS4.5's evaluation was much more detailed. We went to Children's 3 times, did receive PDD-NOS diagnosis but also were referred for further testing to confirm or disapprove the diagnosis. We're on a waiting list for that one.

DS4.5 is also the clumsy kind of child, with poor fine and gross motor skills (walked and reached many of the physical milestones even later than DS3) but his problems look nothing like when I watch DS3' face and hands. They are basically lacking movement. I'm looking a preschooler trapped in a 1-year old's body. That doesn't seem right, which is why simple Autism diagnosis does not satisfy me.

MK13 - one thing that I am struck by in your last post is that your DS may very easily have BOTH speech (physically forming words) and language (pragmatics of social communication) issues going on at once and the speech therapists you have been seeing perhaps are either not distinguishing the two (lack of skill on their part), or are failing to communicate well with you about what they are seeing/treating and how/why (lack of communication with you). I can certainly get how frustrating it must be that the therapy you are being offered is so distressing for your children and I don't subscribe to the idea that it doesn't matter if it's traumatizing them, it must be done this particular way because that's what we do with autistic kids... I would be stopping seeing those practitioners too. But quality of the current services is a different issue from whether there actually IS a speech or language issue that needs to be addressed (in a way that works).

I do wonder with the IEP meeting to what extent the generic "these are the services children with Autism get..." is supposed to be followed up by the actual practitioners figuring out what KIND of speech/OT/etc is most beneficial for this particular child?

Finally, I would have thought that "A preschooler trapped in a 1 yr old's body" falls directly inside the "pervasive developmental delay" category? ASD is not only one thing, it's a group of issues all of them on a spectrum, your two sons may have different subsets of those issues, and each issue expressed in quite different ways, thus both sons can then seem very different and still be on the spectrum (just as two gifted children can be very different but still both be gifted). For example - you can see both hyperlexia OR dyslexia with Aspergers, you might see under responsiveness OR over responsiveness to sensory input (and one child may be under sensing in one area and over sensing in another). One child may express their motor development issues through clumsiness, another through limited motion... But all of the issues still fall inside "pervasive developmental delay".

I am pretty sure that the Speech therapist we had through early intervention (done as of last week) had limited experience with children like my son. When I offered advice on how to approach him because clearly, I know how to approach him, she still wouldn't follow. She would push simple things like wanted him to say "open" or "open gate" (gate to our playroom where we did the therapy) and he would refuse to repeat it. The more she'd push the more frustrated he got. To me it looked like he simply did not want to say it because he did not want that particular action happening. ... I got him to say it very easily and since then any time he wanted me to open a door for him or gate, he'd say "open" or "open please". Or I'd ask him "do you want me to open the gate" and he says "no" or "yes open". But he refused repeating things after the therapist or engage in what she wanted him to do. I work with him every day through activities HE wants to do and I just take part in them and he's usually just fine with it. In fact he doesn't want me to go away and wants me to keep playing with him. ... I didn't know it had a name until I came across "floor time" approach to therapy. He responds to it much better.

He's freshly three and still can't walk down the stairs. He will scoot down but takes him a long time to think through how to tackle the first one or two steps. After that he just keeps going. He has learned to walk upstairs finally just recently. He can climb ok, he can get down from high places ok but the look on his face when he's sitting at the top of the stairs looking down, it says "oh, what to do? what to do?" He just gets stuck and can't plan those first moves. On the other hand, he has GREAT balance! Go figure! So definitely some sort of motor issue going on.

I do trust the place where I'm taking him for the speech eval in the morning and they know me and I know they will take me seriously. So, should THEY say they don't see any motor issues I am suspecting, I will have some peace and will just keep on working with him. He is improving every day in all directions so I am quite happy with his progress at the moment. I told my husband just today that I feel like DS3 has jumped from being a 1year old to being at least a 2year old in a matter of one week! If that isn't progress, than what is?