If not ASD, tell me about communication/speech disorders or delays? (updated)

[JordanKX]

My son who will be 3 in September, is already in EI for speech therapy. So we've already got the ball rolling on that (he's in his 3rd month of basic "observation" at this point, 2x a month for 1/2hr).

Me, the pediatrician, the speech/behavioral therapists he's seen so far have never expressed any ASD concerns. It's never even been brought up. Actually EVERYone said "he talks as though he's under-water, have his ears tested".

Did. Hearing & ENT. He's fine. Not his ears.

But we just went back "home" after 2yrs, stayed 6 days with parents, my step-mother who is an NP and does WBVs all day long. SHE expressed ASD concerns. Not just concerns, but really laid it out there in a very scary way, ending with "I worry that you have a difficult road in front of you"... which has completely thrown me into a tailspin.

I've read up on ASDs since my son was born; I've monitored all the things to look for. To me, at least, he hasn't matched up with anything to worry about... except this glaring speech delay. He is very social, loves all types of activities, has friends, doesn't have fixations, doesn't tantrum (which is a bit odd in itself! :-) but he's just a happy kiddo!),  no sensitivity issues, etc.

His speech... I mentioned at his 2y WBV that he had limited consonants. yes, had 100+ words, but they all sounded the same. All CGK consonants. Now nearing at 3, the consonants haven't changed At All... he puts multiple words together. He mimics, he definitely is talking to his animals/cars in fantasy and plays out a scenario, but you can't understand the words. He does NOT tell stories. He does not tell you about his day; there is very little communication back & forward. He will answer questions, he'll point out the plane in the sky, but it's still... ANE, UH-(p), EI. Nothing like... plane in the sky, mommy and I went on a plane, we saw grandpa, grandpa had dogs. Certainly nothing like that.

His new thing, which I internalize as very sad, is... he realizes that you don't get what he's saying, so he looks up at the ceiling and says... Um... and tries to say it a different way. Even makes his mouth in a different way or uses his hands. Doesn't change the way he pronounces it, but he's clearly trying. (I am thinking with the new hand-movement, that he might be a good candidate for signing... something we've never tried before, well, not since the few things as an infant).

Since my step-mother threw out the autism word, I've researched everything again as far as what to look for. I mean, I really don't want to be in denial - if she saw a concern, I'll look at it. But I'm just not seeing it. I've talked to his current daycare and his past daycare. And nothing. Nothing that ever warranted them talking to me, and nothing that is glaring that they say "well, now that you mention it, maybe".... Nothing.

My Step-mother....

• Obvious speech-related concern.
• She thought the schedule was an issue. That I feed him at 5:30 (that he does really change about 5:20 if he hasn't been fed... is that schedule? Or something I've been wondering about nutrition, like... maybe he really NEEDS something in his system by that time of day?); I still chalk that up to the fact that they were annoyed that I fed him so early and it didn't fit in to THEIR schedule. Afterall, we were at their house. It wasn't their normal routine. And... I am a bit concerned by potential change in personality (not melt-down, but just "crazy kiddo") that happens when I don't feed him as soon as he gets home from daycare.
• She found him repetitive with the words that he did say.
• Main kicker was his clumsiness... that he falls All.The.Time. And he does. Seems to be a bit better recently, but maybe that's just me. His gross motor is definitely not great, but he scored low on the behavioral test with EI on that, and it's incorporated into his IEP.

OK, incredibly long-story short.

I've not been concerned. His pediatrician ONLY referred me to EI because of me. He's already in there and THEY have never voiced anything ASD related.

What I'm looking for now is... it's not ears.

He's in EI and will be soon re-evaluated for the 3+yr group, which I'm sure he will qualify for because little/no change in the past few months.

Right now, she is the only person that's said anything ASD related.

Is there something I need to be questioning to his speech pathologist now that we know it's not ears?

Do I need to voice my step-mothers concerns? Do I need to be concerned? Is there something else I should be doing? I mean, what else is out there other than EI.... other than a full evaluation. Do you think that's warranted? Or just let them test him for the 3+yr group and see what they decide?

And what are other potential causes/disorders out there for speech-delay? If not ASD... what?

Not that I really care about causes,well, not really... but... what IS going on with him?

Thanks for any advice or BTDT experience.

Edited by JordanKX - 6/28/12 at 1:47am

[Emmeline II]

"Professional" relatives-- sometime relatives can provide a unique perspective because they know you and sometimes whatever knowledge they have is filtered through family baggage. Nothing you've said jumps out at me as ASD in particular. I think it's encouraging that he understands that you don't understand him and is actively considering another way to communicate that thought .

There is at least one poster here who was repeatedly told her child had ASD but they finally discovered it was a specific language disorder. Has your ds seen an audiologist? It could be that the problem is not his ability to hear but in how his brain processes the information heard.

Auditory Processing Disorder

Information Processing Disorders

Also, low blood sugar can cause behavioral changes; I've seen a few posts about that here as well. It may be that he needs an additional snack at that time of day. Maybe you can pack an extra snack for him to eat while he's waiting for pick-up or to eat in the car on the way home.

I do recommend an interdisciplinary evaluation at a hospital clinic, if only because it is not a good idea to rely on the school district. It can take awhile to get an appointment at these clinics; the upside is that he'll be a bit older (helpful when evaluating development) and you'll have the two EI evaluations for reference/comparison.

Doernbecher Children's Hospital

Legacy Emanuel Children's Hospital

[Linda on the move]

I'm not a professional and try to not DX other people's children (because I'm not qualified) but your child doesn't sound spectrumy to me At All. To me, it sounds like something is up with motor skills and speech, may be those are related -- he can't quite work his limbs and he can't quite work his tongue and mouth. How frustrating for all of you.

I've no real advice -- I'm just a mom of a kid with a different problem. But if he were my son, I think I would start trying sign language because he sounds frustrated with his lack of ability to communicate. Besides, it would be like raising him bi-lingual, so that's a good thing anyway.

Would your insurance pay for private speech therapy?

Also, this might sound like an odd suggestion, but for my DD (who is on the spectrum) swim lessons were a wonderful thing, and she started about the age your son is now. She LOVED being in the water, and got the hang of make her body work in the water before she was really good at being on land. It was a happy, fun, normal activity that was great for her developmentally challenges.
 

[SpottedFoxx]

I second Linda's suggestion of sign language.  Very helpful with language delays. 

Most 3 year olds who have special needs or are completely neuro-typical do better when on a schedule.  End of story.  It has nothing to do with ASD.

Most children when learning to speak are repetitive.   As long as it's not obsessive, over and over all day every day chatter, it's not necessary an ASD trait.

Finally, the clumsy.   To me, clumsy + speech delay = apraxia - not ASD.  www.apraxia-kids.org is a good organization to learn about the disorder.  My son has apraxia of speech (he doesn't have the fine/gross motor issues).  

For your SM to say "you have a hard road ahead of you" is ridiculous.  Show me one parent that doesn't have a hard road.  Raising kids is hard.  Raising kids with special needs absolutely presents different challenges and depending on the level of special needs your child has may make your road a more difficult one but I promise you - as hard as it is... it will be wonderful!  While your friends may take hearing a clear thank you from their child for granted, you will swoon with delight.  While your family's kids may play soccer or baseball and the parents think that it's all part of childhood, you will jump with joy at seeing your child run a race or ride a bike.  

One recommend I'd like to make is that you look into either therapeutic riding or hippotherapy.  It's therapy on horseback and it will help with the clumsiness.  If your son has a weak core, the therapy will help with that.  If you can do hippotherapy, they often do speech therapy on horseback as well.   Two resources for this are http://www.americanhippotherapyassociation.org/ and http://www.pathintl.org/.  My son has been doing therapeutic riding for a year and a half and it's helped tremendously!

[fizgig]

Oh boy, first I think you should ignore your step-mother.  Very few people are qualified to tell the difference between a language disorder and ASD since they often look VERY similar.  The way you describe your little one makes it sound very unlikely that he is on the spectrum.  Obviously I can't dx and I'm not an expert but our DS is also not on the spectrum and has a language disorder.  Our DS is almost 3.5 and has only about 50 words and they are very hard to understand.  But he is also social, has no stereo-types behaviors, no restricted interests, etc. 

I can tell you I've been through the ringer emotionally trying to figure out what on earth was going on with our DS.  Many people will automatically assume ASD when a child isn't really talking.  It is outrageous and totally wrong headed to make that assumption considering there are many, many things that can cause a language delay (processing disorders, MERLD, etc). 

That your son is also having gross motor issues would encourage me to take him for a full evaluation from a developmental pediatrician.  They can help you really figure out what the issue is and give you a road map to help your DS.  EI and the school district is NOT where you should turn for a dx if that is what you are looking for.  They have a very narrow list of ways your child can qualify for services and they will plug him into one (or two) of those if they are going to offer services.  They are just thinking in terms of school services, not in terms of the whole picture of what your DS might need.
 

I hope this helps!  Plus, don't forget to enjoy this time with your DS!  I know I went through a time period where I was so stressed that I just wasn't able to enjoy the amazing little guy DS is :)

[JordanKX]

Thank you all for your responses.

This weekend I had a good little talk with myself and basically threw out my step-mother's concerns. One thing that seems to ring true on most blogs and forums I've read is to trust your instincts. And while most of them are forwarded at pediatricians - trust your instincts, if you think there's a problem, act on it; the same goes the opposite direction, if you don't have instincts screaming ASD (and no other voices out there sharing concerns), then stop freaking out. So we just brought out the toddler pool and had an amazing weekend in the sun.

I am still concerned at his speech delay, obviously. And I needed exactly your responses, that there are other options than simply the school district, and my pediatrician has not shared those with me. So I suppose the next step would be in talking to him?  I know EI will give me tools, eventually, on how I can help at home... but if there is something going on "disorder-wise", I would like to know that. Not just in services, you know, but in general help! Now that we know it's not his ears or a physical deformity getting in the way of his speaking, it could be something in the processes.

Thank you for all the links... I will certainly check out.

[Lollybrat]

Originally Posted by JordanKX 
 Actually EVERYone said "he talks as though he's under-water, have his ears tested".

Did. Hearing & ENT. He's fine. Not his ears.

This comment made me think of the book "Like Sound Through Water" by Karen J. Foli.  It's her story about her son with Auditory Processing Disorder.  You might find it interesting.

http://www.amazon.com/Like-Sound-Through-Water-ebook/dp/B000FC0R5Q/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1339518013&sr=1-1&keywords=like+sound+through+water

Originally Posted by SpottedFoxx 

Finally, the clumsy.   To me, clumsy + speech delay = apraxia - not ASD.  www.apraxia-kids.org is a good organization to learn about the disorder.  My son has apraxia of speech (he doesn't have the fine/gross motor issues).  

I agree with this.  The website linked above has a lot of great information.  There is also a book called "The Late Talker" that discusses apraxia in depth. This book has a really good section on understanding the difference between a language delay and a language disorder.  

 http://www.amazon.com/The-Late-Talker-Child-Talking/dp/0312309244/ref=tmm_pap_title_0?ie=UTF8&qid=1339518229&sr=1-1

My son has apraxia (dyspraxia) and auditory processing impairments as part of his autism.  But kids can have those as stand alone conditions.  In my DS's case, his dyspraxia affects his speech as well as his fine motor, gross motor, and oral motor skills. 

[SpottedFoxx]

Originally Posted by Lollybrat 

This comment made me think of the book "Like Sound Through Water" by Karen J. Foli.  It's her story about her son with Auditory Processing Disorder.  You might find it interesting.

http://www.amazon.com/Like-Sound-Through-Water-ebook/dp/B000FC0R5Q/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1339518013&sr=1-1&keywords=like+sound+through+water

Fantastic book recommendation.  

[JordanKX]

my Amazon account appreciates you. Thank you for the great book recommendations!! :-)

[SpottedFoxx]

LOL - one thing I've learned... library first -if it really rocks your world and know you'll read it again, then buy it ;)

[aspeechthx]

Hi,

Looking over your post quickly, I would definitely look into Apraxia as an explanation for your child's delay. I am a speech therapist who works with the birth to three kiddos. It does not sound like ASD from what you have posted. Often pediatricians are not familiar with speech and language issues, especially in children younger than three. They often have a "wait and see" attitude. A speech therapist who has experiences with infants and toddlers can tell you what is going on with your child. Good luck and best wishes for some answers!

[sbgrace]

I have a spectrum child and your description, to me, doesn't ring true to autism at all.

It does, however, ring true to apraxia of speech. Dyspraxia can go in with it too which might (might) account for the clumsiness.

If you're dealing with apraxia you want to start now with an apraxia targeted approach with a therapist trained in apraxia specifically. I've heard good things about Prompt therapy for apraxia (my son is not apraxic so I don't have experience myself). Here is a link to see if someone who does this might be near you--there are more therapists than instructors obviously! http://promptinstitute.com/index.php?page=find-a-prompt-slp I'm sad when I read him trying to find another way to say things to be understood.

[JordanKX]

I've been reading about apraxia, and while he doesn't seem to have other physical issues (issues with tongues, lips, or difficulties chewing) and has never been truly silent, there are still some aspects that seem to fit well. I do appreciate your experiences and insights!

He came charging in tonight with Grandma going "ire-tuh, ire-tuh, udda, er-me"... which I got was Firetruck, Firetruck, Thunder, Scared me.

My mother looked at me in amazement that I understood him.

And I'll admit, that's not always the case! But these words, I got.  Because they're some of his favorite words.

The Late Talker seems to be a great book so far... a lot of resources.

I try not to self-diagnose, you know? But it is good to look over different evaluative methods and see what things I should be looking for and what to keep record of, when we actually see someone.

He talks. All the time. He is in no way a silent child and it's definitely more than grunts, mmms, and basic utterances. He can make the three syllables that is elephant, or most any other word. But you can't tell it's a word... just that he hears the 2-3-4 beats in the word.

I'm sure you wouldn't call... Firetruck, Thunder, Scared me, an actual sentence. :-) They're not words that go together in a sentence, and that's most of his speech. It is never "mommy I want a sandwich".... it's "anwij (that's a J) me. anwij me," and always in that order. Never that I want, it's item+me.

I suppose my concerns will be what to do when he has his "almost 3" evaluation with the school (end of next month) and what resources will be available at that time. I simply do not know enough about what our school district offers. Right now because he's in the birth to 3 group, they're off for the summer, so those 4 appointments that he had in April and May.... hmmm.... I'm not thinking super helpful except for a record of what he can say (which I suppose is a start). I don't mean to be rude, I understand their limitations and it was fully explained to me what would be available before he turned 3 so no big surprises there.

Everything else in this area.... limited. Plus he's on the Oregon version of medicaid which is just awful (very different from most states and offers only diagnostic and emergency care). As a self-employed single-mom, it'll be difficult for me to afford private insurance. But it's definitely something I'm looking in to.... regardless of what transpires with his speech. I want to make sure I can get him the care he needs.

Also as a self-employed person, moving is not out of the question if I needed.

[Fay]

The book "The Parent’s Guide to Speech and Language Problems" by Debbie Feit summarizes the symptoms and treatments for most speech disorders.  It may still be a good idea to get an evaluation with a developmental pediatrician to rule out other possibilities.  Maybe it's because I deal with my kids' tantrums multiple times every day, but having no tantrums at all is a cause for concern, because it means he is not expressing a full range of emotions - combining that with a speech delay, there may be an underlying developmental issue that hasn't been identified yet.

[Jen Muise]

Some kids have ear infections that have few or no symptoms, but the fluid interferes with them being able to understand speech.  THe book "When the Brain Can't Hear: Unraveling the Mystery of Auditory Processing Disorder " http://www.amazon.ca/When-Brain-Cant-Hear-Unraveling/dp/0743428641 discusses this and other sources of speech disorders, altho of course the main focus is on CAPD and its various impacts on people. 

[SpottedFoxx]

Jordan, all developmental delays and disorders are a spectrum.  Your child doesn't need to exhibit all signs in order to be diagnosed.  My son had low oral tone, severe articulation and expressive language delay but none of the other physical issues (clumsiness) that go with apraxia and dyspraxia (they are almost interchangeable).  However, he does carry that diagnosis.  You will see children with mild forms of apraxia and severe and many somewhere in the middle.  As the previous poster suggested, you should find a speech therapist who knows apraxia and can work with your child (if it is apraxia).  The earlier you tackle this, the better off your child will be.

[mamarhu]

If you are in the Portland area, look into Swindell's Center, at the Providence Hospital Children's Center, northeast on Glisan. They have a free lending library devoted to books on children with disabilities, and many free classes, groups, resources, etc. And nice people.

Also, I don't mean to argue, but OHP is much better than the reality of most private insurance with kids with disabilities. My kids have had both at different times, and while OHP sometimes takes some searching to find a practitioner who can accept it, private insurance typically has lower caps and fights any referrals. PM me if you want the name of a Physical, Occupational, and Speech Therapy clinic that takes OHP in Gresham. Needs a referral from your ped, but they will take care of that.

[aspeechthx]

Here are a few things to try as you are playing: Imitation skills are important. Imitate sounds that he makes and play back and forth with them. You can echo back and forth in a large cup or tube. Take a silly sound such as "boom" and throw blocks in a bucket as you say it back and forth.  Even if he can already put words together, a fun, back and forth interaction takes the pressure off of speaking. Pound play-doh balls and take turns saying "pound, bam" or something similar. At this age, activities should be fun, engaging and light-hearted. Avoid saying "Say____". Do not focus on colors, numbers , shapes or pleaes/thank you just yet. These will come later. Choose words to target that are powerful for toddlers...words that make things happen... and repeat them often as you are playing (mine, stuck, open/shut, help, big, jump, cookie...). Your child may have already learned that "talking" is difficult for him, so reward any attempt to say or imitate words ("You were watching my mouth. You made your mouth just like mine! ..." Child says "doo". You say "I heard you ask for juice...here you go.") these are strategies that I use with toddlers, of course older children will respond to more elaborate cues

Here is the general order for eliciting speech in a toddler 1) vocal play. Help him find his voice using horns, whistles, echo tubes... 2) pre-speech sounds like raspberris or lip popping, kisses 3) simple speech sounds: animal sounds, vehicle sounds, uh oh, whee... 4) words with repeating syllables: hoho/santa, mama, mommy, beebee/baby...

Jordan KX, I hope these give you some ideas to use at home as you are playing. Keep it fun, light and encouraging. Appropriate toddler speech therapy looks more like play than therapy!

[JordanKX]

Originally Posted by mamarhu 

Also, I don't mean to argue, but OHP is much better than the reality of most private insurance with kids with disabilities. My kids have had both at different times, and while OHP sometimes takes some searching to find a practitioner who can accept it, private insurance typically has lower caps and fights any referrals. PM me if you want the name of a Physical, Occupational, and Speech Therapy clinic that takes OHP in Gresham. Needs a referral from your ped, but they will take care of that.

Maybe OHP just seems to limiting in Southern Oregon (Medford) because of our lack of resources? We have excellent facilities for older adults and are actually renowned, but when it comes to children...  I mean, there's ONE audiology clinic other than through the school district.  When we thought it might be his hearing, I had to fight tooth & nail to even SEE an ENT (which diagnostically was covered by OHP) because any of the results found by the ENT, OHP wouldn't cover (no surgeries, no tubes, nada. They stopped covering all of that in Feb 2012. 8 pages in this incredible print-out that OHP no longer covers). Maybe speech therapy isn't one - that would be Amazing to hear. 

Seriously Would Move to Portland :-)

I did just call a local speech center that, when I said OHP, referred me to the hospital Speech therapist... that they don't bill OHP and I could never afford private pay. Well, I appreciate the honesty there at least.

We meet with his new therapist through EI tomorrow (they just had a change in therapists, apparently everyone quit.... so all in the birth-3 group has been without a session for 6 weeks). We'll chat a bit after their appointment. But it will be his only EI appointment until after he turns 3, after he is evaluated to move in to the over 3, which is more than 3 months away.

So.... YEAH, if I could get in for a professional evaluation somewhere, I think I'd like that.

I mean, I'm not panicking... but everything I read says the "wait and see" approach just isn't good enough. WHY wait and see when something could be done now, right?

[SpottedFoxx]

Jordan - look into applying to your State's Department of Developmental Delays http://www.oregon.gov/DHS/dd/.  Many states offer (among other things) financial assistance for therapy.  It's not based on income, it's based on their developmental delay.