Speech therapy, PDD-NOS, and apraxia...questions.

[daytripper75]

I posted earlier last month that I had taken my son into the local children's hospital for a speech evaluation. I got the report from the speech pathologist yesterday. She was the only person we saw at our visit to the hospital.

The report was 4 pages long and of the 4 pages, three paragraphs were about my son's speech development. He seems to have scored fairly normal. I don't have the exact scores in front of me but the test had a mean of 100 with a standard deviation of 15. He scored 98, 96, and 98 on the three parts of the test. So just a teeny bit below average.

The rest of the 3 and a half pages were about his "behaviors." The SP asked me a lot of questions about ds's behavior. Is he particular about things? Does he initiate play with others? Does he pretend? She was really concerned that ds wanted to count each object in her speech test before moving on. I tried to explain that his father is gifted and that his sister was the same way as a toddler but she still said it concerned her quite a bit. She wrote in the report that I had mentioned that ds does not like to have dirty hands and needs to have the seams in his socks lined up over his toes. She said that while those things are not enough to qualify him for a diagnosis of PDD-NOS he should be monitored closely for more symptoms. That he should also be monitored for development of apraxia of speech.

I don't have the right words to ask the questions I need answered but I am going to try. Forgive me for bumbling through this...

Can PDD-NOS and or apraxia progress? Can a child who likes clean hands and straight socks turn into a child who suddenly (or gradually) is living a more complicated life due to PDD-NOS? I was under the assumption that spectrum disorders usually "are what they are" by the age of 2.

I'd love to just say that this speech pathologist had an agenda but I want to make sure I am doing the best for my son.

Have to run, will be back soon.

[joensally]

Spectrum diagnoses can become more clear as a person gets older and their world becomes more complicated and they're not managing "typically" within it.

That said, she's a speech path. Sure, he's got some flags - for SPD perhaps, or for being a sensitive human. Or maybe PDD.

DS has SPD, dysgraphia, motor coordination issues and he's gifted. Teachers have suspected PDD-NOS, but he just doesn't meet the criteria after multiple professionals have assessed. He's got flags (see SPD above ), but he just doesn't meet the criteria. DS also hated getting his hands dirty in the preschool years - now it's mostly fine. Lots of this stuff is pretty standard for the preschool set.

I wouldn't assume any agenda on the part of the speech path. Funding is tied to diagnosis and so professionals get really keyed into the "signs" of funded diagnoses. I think that humans have a very wide variation of "normal" but funding formulas are turning quirks into diagnoses more than in the past.

[Linda on the move]

Originally Posted by daytripper75

Can PDD-NOS and or apraxia progress? Can a child who likes clean hands and straight socks turn into a child who suddenly (or gradually) is living a more complicated life due to PDD-NOS? I was under the assumption that spectrum disorders usually "are what they are" by the age of 2.

my DD's current dx is PDD-NOS. I don't know anything about apraxia.

Her life is more or less complicated at different times depending on what the demands on her are from the rest of the world. It's not that she "get's worse" but that what is age level approprate keeps changing and becoming more complicated. She keeps progressing, but not at the rate children are generally expected to. And she isn't progressing in the quite the same way, so it isn't even that she is *behind* but that she is on a different path, and one that is sometimes difficult to figure out.

Some ASD are dx'ed young, and some aren't. Aspergers isn't dx'ed until something like age 6. All of the flags for aspergers are normal for small children to exhibit to some degree at some point. My DD's eval at age 3 said "autism like behavoirs" but did not label her as "autisic."

Autism is a spectrum and there is a grey line between "gifted and quirky" and "high functioning autism." I think it really comes down to whether or not the quirky stuff is a big enough deal to impact the person's life in a negative way.

Sadly, for children, the line can be "does this child need an IEP/504 to be succesful in school, or can they do OK without accomodation?"

I'd love to just say that this speech pathologist had an agenda but I want to make sure I am doing the best for my son.

A speech pathologist isn't qualified to dx PDD-NOS, but they can look for flags.

Are the little things like seams in socks and clean hands things that impact your son's life in any real way? My DD's sensory issues are such that it has a HUGE impact on every aspect of her life and our family. Does it make it hard to get him dressed to leave the house? Can he go places and have fun? Does he seem happy? Does he fit in with other kids? Do you have to plan family fun activities around his issues?

My favorite book on this topic is "Quirky Kids" by Klass.

I personally think that almost everyone has some goofy sensory thing that bugs them. I hate bright sun light and wear sunglasses all the time, but I dont' have an ASD. I just have sensitive eyes.

[RiverTam]

Been there, done that.

We through all of this last year. Your speech-language pathologist might not have an agenda, but she is hyper-sensitive about ASD. That's fair because many ASD kids present first to speech language clinics because they show a language delay. The speech-language pathologist really isn't qualified to diagnose ASD, but she is qualified to spot the warning signs and recommend further screening for ASD. Your pediatrician is the professional who is most familiar with your child's development and with ASD criteria. If I were you, I'd take the speech-language therapist's report to your pediatrician and ask the ped if your child needs further screening for ASD. The pediatrician knows your child and can make the best recommendation.

The boundary between some speech-language disorders and ASD isn't clear. There is a debate about whether pragmatic language disorder is a specific language disorder, or if it's a form of high functioning autism. Most clinicians and researchers in the UK say it's a form over high functioning autism. Most US clinicians and other researchers say it's a specific language disorder. There's an overlap between the symptoms and we don't know if they're the same disorders, or just have the same symptoms.

Also, kids who are very visually spatially gifted sometimes have difficulty with language development. In extreme cases, they don't talk on time. It's called Einstein syndrome. http://en.wikipedia.org/wiki/Einstein_syndrome

[daytripper75]

Thank you all for the replies! I should have mentioned in my first post. My son is hard of hearing. He has severe sensorineural hearing loss in his left ear due to congenital CMV. His right ear is fine. He's also the son of an engineer.

I spoke with both of his regular doctors (family practitioner and ENT) about the speech pathologists assessment and neither one agreed with her. I think I am struggling to balance out what might be denial with how I feel like our society is too quick to label people. The quirks my son exhibits don't impede on our lives at all. I just make sure I put his socks on straight; this morning I didn't and he reached down while I did the other sock and straightened it without a peep. He's just a happy go lucky kind of kid who enjoys just about everything.

I'm glad to know the details of spectrum disorder symptoms becoming more or less problematic as the child develops. He's in a great special ed preschool for his speech and soon we'll have parent teacher conferences, so I am eager to hear what they have to say about him since they haven't been told what the hospital SP thinks.

I think he is just going to turn out to be one of those kids who is on his own path.

[sbgrace]

Pediatricians are, for the most part, very bad at detecting spectrum stuff in kids who aren't more severely affected. That's been my experience both w/my son and what I've seen time and again here. I would not rely on a pediatrician to determine whether a child needs an assessment.

That said, nothing about the socks and all is diagnostic of ASD or even what I think of as important in terms of flags.

I'd look at some of the criteria and see if anything raises flags for you. If so I'd want an assessment personally. In my experience some parts of autism get more obvious with age but that's because the social demands become more complex as kids get older. But kids also develop and advance so certain areas can get easier too. I suspect it varies from child to child and even within the same child from time to time.

These are my best "could it be autism" links:
http://www.childbrain.com/pddassess.html (this one is an online assessment to see if further evaluation might be warranted)
http://www.bbbautism.com/diagnostics_psychobabble.htm (real life language of the current (not upcoming) diagnostic criteria for pdd-nos.
http://www.autismspeaks.org/video/glossary.php Video glossary of what autism looks like in spectrum kids compared to typically developing.

[RiverTam]

Originally Posted by sbgrace

Pediatricians are, for the most part, very bad at detecting spectrum stuff in kids who aren't more severely affected.

It depends entirely on the quality of the pediatrician. My pediatrician went to a top 3 medical school and did her residence at a top 3 children's hospital. She's one of the best pediatricians in our city. I trust her judgment on this. I trust her with my kids' lives.

Before we took our son to the speech/language pathologist, we had him seen by a psychologist who specializes in gifted kids. Her opinion concurred with our pediatrician's opinion. The psychologist specifically ruled out ASD, ADHD, and OCD as part of the assessment. She is the one who recommended the speech and audiology assessment.

[sbgrace]

Originally Posted by RiverTam

It depends entirely on the quality of the pediatrician. My pediatrician went to a top 3 medical school and did her residence at a top 3 children's hospital. She's one of the best pediatricians in our city. I trust her judgment on this. I trust her with my kids' lives.

Before we took our son to the speech/language pathologist, we had him seen by a psychologist who specializes in gifted kids. Her opinion concurred with our pediatrician's opinion. The psychologist specifically ruled out ASD, ADHD, and OCD as part of the assessment. She is the one who recommended the speech and audiology assessment.

It certainly does depend. But the vast majority of pediatricians are horrible in this area. The majority would readily admit that (including my own brother in law who graduated from Duke and is at the top Children's Hosptial in our state).
I'm not questioning your pediatrician's assessment of your son. I'm telling the OP (and people in general) that pediatricians as a whole aren't great with knowing when they see autism in a more mildly affected child. And they certainly aren't trained to evaluate kids for autism. So if there is any concern in a parent's mind a pediatrician, if he/she recognizes where their expertise ends, should refer to a specialist in autism assessment.

[Linda on the move]

Originally Posted by sbgrace

I'm telling the OP (and people in general) that pediatricians as a whole aren't great with knowing when they see autism in a more mildly affected child. And they certainly aren't trained to evaluate kids for autism. So if there is any concern in a parent's mind a pediatrician, if he/she recognizes where their expertise ends, should refer to a specialist in autism assessment.

I completely agree with this. My DD's doctor is great, but her eval was done by a specialist who spent a day and a half with her and many more hours reviewing input from the school, her counselor, and myself.

These things aren't dx'ed in a doctor's appointment.

[daytripper75]

Thanks everyone. I am on the fence about taking him to a developmental pediatrician. I don't think he is on the spectrum but do recognize his quirks. I don't want to look for trouble but I also don't want to ignore what might be trouble. *sigh*
I am going to wait for parent teacher conferences and see what I can glean from the teachers...

[RiverTam]

Originally Posted by Linda on the move

I completely agree with this. My DD's doctor is great, but her eval was done by a specialist who spent a day and a half with her and many more hours reviewing input from the school, her counselor, and myself.

These things aren't dx'ed in a doctor's appointment.

I didn't say that a pediatrician should make the dx. I said a good pediatrician can give good advice on whether or not further screening is necessary. At the very least, your pediatrician can direct you to other resources.

If it were me, and I trusted my pediatrician's abilities, I would still start there.

I don't know what older pediatricians had for training on recognizing ASD, but the younger pediatricians are getting the training. My pediatrician had a lot of training in it. One of my friends diagnosed another friend as ASD while she was in med school, because she was getting trained in it. (He went for further screening and got the DX. He was over 40 when he was finally diagnosed. It's made a big difference for him.)

[daytripper75]

Okay, I spoke with his teacher this morning. She has a degree in early childhood special education and she said that he has a couple of quirks but nothing out of the developmental norm and that she will let us know right away if anything ever hits her radar about ds.

So, I don't feel the need to go further with it at this point but will keep an eye on him. I think he's just going to be a kid who doesn't fit well into anyone's boxes...