UPDATE 9/8 autism ?- Is there a speech/language path here? - Mothering Forums

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#1 of 22 Old 07-15-2005, 11:22 PM - Thread Starter
 
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I thought I remembered seeing someone post that she was a SLP and I have a question. Since ds hasn't been able to start speech yet, I thought i'd post here. If anyone can help, that would be great.

Ds1 was dx w/autism earlier this year. We've been approved for therapies (OT, PT, speech and music) but have only started music and will start OT soon. Since music has started, ds has picked up a few words here and there and I see him watching how I'm speaking. He had been doing this, but is doing it moreso since starting music. He'll point my finger to a picture in a book and watch me say the word, then move his mouth in the same way, then try to say the word himself.

My question is this- he took almost 4 mos to learn to nurse. Had a VERY bad suck, the IBCLC we had been working with said he was the 1st baby she hadn't been able to get to latch in the 16 years she'd been an LC and suggested we see an SLP b/c of speech and feeding being closely related. By the time we got the appt, we had corrected the situation through fingerfeeding to retrain his suck. What brought me to get ds evaluated now was a lack of speech and during that evualuation period, the lack of speech and other symptoms is what led to our autism dx.

Is is possible that autism has been present since birth and that was the cause of the feeding issues? Is it possible that b/c it took him so long to nurse properly (weaned at 22 mos), that it's not surprising he's speech delayed.

Any ideas? the speech therapy is what I want/need most, but that seems to have the longest waits. I am amazed at how the music is working for him, though.

Thanks for any input!

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#2 of 22 Old 07-16-2005, 08:22 AM
 
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ok, so I'm not an expert at all, so take with cups of salt...

My little boy has a PDD-NOS diagnosis so I've been reading a lot. One book I read was Judith Bluestone's The Fabric Of Autism which is on the new age-y end of things, but I found it incredibly enlightening. She is autistic herself. She talks about hypersensitivity of the trigeminal nerve, which is a cranial nerve servicing the teeth, the gums, the tongue etc. She says that autistic people often have irregular tactile sensations from this nerve, and that they also often have weak muscle tone in general, which cause sucking problems from birth and chewing and articulation problems later. She also talks about the loud noise sucking and chewing makes inside your head, which can be experienced as pain by a hypersensitive child... she basically sees autism as an extreme case of sensory processing dysfunction... it's all about perception and dealing with overloads of sensory information.

ANyway! hth.
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#3 of 22 Old 07-16-2005, 05:33 PM
 
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Not an expert either, but...

My son has SID and major feeding/oral motor problems as well as a speech delay. His suck was very very VERY weak in the beginning, and his latch was poor, so much so that we went through quite a lot for him to be "able" to nurse and to get my supply up to make up for his lack of proper stimulation (good suck).

The SL/P he saw and his OT said his nursing problems were probably very much related to his feeding problems and SID, which was most likely present at birth.
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#4 of 22 Old 07-16-2005, 07:52 PM - Thread Starter
 
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Thanks to you both.

We don't currently have feeding issues- the nursing things were resolved, but with LOTS of work. I'm hoping the speech issues will also resolve with some work. Ideally, we have a misdiagnosis of autism b/c of the speech issues, but I'm not counting on that.

Lizziejean- does that book discuss craniosacral therapy for the cranial nerve causing the problems?

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#5 of 22 Old 07-16-2005, 10:49 PM
 
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Hi Michelle,

I'm not an SLP but I'm a behavior analyst who ends up doing a lot of speech therapy with my students.

I agree that there could be several reasons for the nursing problems but he may just have overall oral-motor issues that make it hard for him to make his mouth move the way he wants it to - hence the watching your mouth and trying to imitate those movements. I'm sure that one component of his ST once it starts will be teaching him to imitate various mouth and tongue positions that will help him be able to say the sounds he wants to.

Early intervention specialist and parent consultant since 2002.
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#6 of 22 Old 07-17-2005, 08:53 PM
 
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shelbean,

no, she doesn't talk about craniosacral (which btw I'm doing with my boy - good effects on tactile sensitivity I think). She has her own whole approach, which she practices through her HANDLE Institute. She has this series of exercises you do, including tapping the temples rhythmically, sucking through a curly straw with your eyes closed, spinning a hula hoop around one wrist and then the other... lots of weird little exercises designed to balance things out. My friend has been taking her son to Judith Bluestone's clinics, and she has had great results.
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#7 of 22 Old 07-18-2005, 11:14 PM - Thread Starter
 
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Thanks lizziejean, I'll add that book to the list of books I have to read.

I'm also bumping this- I know there's a speech therapist here somewhere.......

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#8 of 22 Old 07-21-2005, 05:52 PM - Thread Starter
 
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Bumping again- I'll also try to search past posts.

Thanks everyone.

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#9 of 22 Old 07-21-2005, 08:35 PM
 
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Hi Michelle! I'm at least one of the SLP's on the site, but i'm sorry to say i don't have a lot of info for you. : I do think that the early feeding issues could very much have been related to his later diagnosis of autism. He may have overall oral-motor sensory issues that interfered with his suck & also with his overall speech production. It's great to see that he is responding so well to music- i've seen it do wonders with kids who have autism!

Does he now eat a variety of foods & textures? Will he play with sounds at all? Like Pikkumyy said, one component of speech therapy will be to help him become more aware of his mouth & what it can do. Picture-based systems (photos or line-drawings) are also often very successful. They take away the presure of getting the verbal message out but still let the child communicate effectively.

I don't know if i have helped at all. I haven't worked with little kids with PDD/Autism diagnoses in a looong time
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#10 of 22 Old 07-21-2005, 08:41 PM
 
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Just wanted to chime in here really quick...

My ds just had his speech eval and will start ST soon. He's essentially nonverbal and doesn't gesture or use sign, so you can imagine the frustration level he has. Anyway, we are in the process of setting up PECS, which is a picture communication system for nonverbal kids. We told our OT and the ST about it, and both of them are very excited and have nothing but positive things to say about it.

Here's a link you may find helpful:

http://www.bbbautism.com/pecs_contents.htm
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#11 of 22 Old 07-22-2005, 03:21 AM - Thread Starter
 
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Thanks Finch-

ds does use the pecs system in preschool (autism, self contained, via public school) but we don't use it at home. He does gesture- he leads us to what he wants and occasionally uses a word, but usually after he's brought us.

We're starting OT in a couple of weeks and ST hopefully soon after.

I'll check into adding that to our home 'bag of tricks'. Thanks.

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#12 of 22 Old 07-22-2005, 03:31 AM - Thread Starter
 
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Bobica- thanks for your reply. I'm still not 100% sure of the autism dx myself, but agree with it enough to treat as if it's correct. I figure if it's right, we've got an early start- if it's wrong, extra therapy won't hurt. He's definitely delayed in speech, but it wasn't until they explained how some of his actions fit into certain autism categories that I even noticed some of the things he does.

Anyway- he's not too terribly interested in many foods. There are certain things he will always eat, new things he's not usually interested (but either is my 5 yo). He didn't start being picky until 18-24 mos or so, before that, he'd eat just about anything I'd give him.

He does make sounds- has almost constantly. He's always babbling, jibber-jabber, etc. He does say some words, but if you're not sure what he's trying to say, you'll never even recognize the words. Popsicle seems to be coming out loud and clear these days, though- it's his favorite. He's started counting- up to 20- but it's jarbled 'wa, doo, pree, por, bye, bix, a, na, te, ebe, bwe, brbe,' etc. I've just listed his 1-13, minus 7, as he usually skips that one. I've tried to to it phonetically, but it's hard.

We have a super nintendo game of mariokart racing that he seems to like the picture. He'll take my finger, point to mario with my finger until I say 'mar-ee-o' and he'll watch my mouth over and over, then he tries to say 'mar-o'.

So, he's getting something, just not quite understanding how to work his mouth- which links me back to his feeding issues- I finger fed him for 3 mos to train his suck properly. He was latching so bad I couldn't use an SNS b/c he'd work the tube out and he'd choke on bottles, even slow flow.

My internet connection has been very intermittant, so if I'm not back right away, that's why.

Thanks again everyone for your replies.

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#13 of 22 Old 07-22-2005, 06:09 PM
 
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Michelle- great description of his counting!!! i could "hear" it :LOL When he starts speech therapy, definitely have the tx look at his oral motor skills. also check out this link about the differentiation of apraxia, dysarthria (oral motor problems) and phonological disorder. See if your ds' speech production sounds like one of these categories more strongly than another. it could help you get off to a smoother start to services
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#14 of 22 Old 07-23-2005, 08:20 PM
 
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Hi Michelle,

I can't answer your question from a professional point of view, but I can share my experience with both of my kids. It might be that his sensory issues were affecting his feeding, but that his autism (the non-sensory part) is affecting his speech.

On the same lines of thought-- you know about Abi not bfing at all, and I also worked with a couple of LC's. One gave up on Abi and I when she was just 4 days old and sent me home with a rented pump. I had flat nipples but Abi was not even willing to try. I think it was too intense for her, personally, having her face next to my skin and having to work so hard to get a latch. Bottlefeeding was done in my arms but her face had "breathing room." Abi never was a "mouthy" baby and didn't explore much by mouth at all. She did drink bottles from the start but dripped a steady stream down out of both sides of her mouth until about age 4-5 mos. I now know from Nitara's therapist that it's not normal. (I used to feed Abi with a washcloth under her chin to catch it.) Abi started very late with solids and gagged a lot and had food aversions and a limited amount of food that she would eat. She was finally dx at 3.5 with sensory issues based on her other behaviors. Abi was an early talker but there was a definite connection between her feeding from the time she was born, and her sensory issues.

Nitara started off bottlefeeding expressed milk by my own choice but I did attempt to nurse her a few times and she latched on okay but didn't stay latcted on. I think she also found it too intense. She didn't even drink bottles well and also dribbled out the sides of her mouth, and made clicking noises. When she was hospitalized at 3 mos. old the therapist observed her eating and thought she probably had sensory issues, and gave me a referral to both an OT and a speech therapist for further evaluation. At 6 mos. old Nitara was evaluated by an OT and found to have severe sensory issues and overall motor and social delays. She has responded well with therapy and no longer sees an OT since the only area that is still affected by sensory issues is her mouth. Again, I am certain that her early feeding skills were related to her sensory issues.

BTW that's great about his talking and counting!! He sounds like he's responding well to that music therapy!!

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#15 of 22 Old 07-27-2005, 09:24 PM
 
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sorry I posted wrong..
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#16 of 22 Old 09-08-2005, 08:49 PM - Thread Starter
 
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I wanted to thank everyone again for their replies.

A quick update for anyone interested.....we met with the speech therapist this week and last for our eval and she's thinking it's speech apraxia. She's going to have to work with him a bit to see for sure, but she'll be able to design therapy that works for him. We're going to be able to have 2 hrs of speech a week, so I hope things improve for him quickly.

Thanks again everyone.

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#17 of 22 Old 09-08-2005, 09:01 PM
 
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Great you're going to start ST!! Hopefully you should start seeing some progress.
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#18 of 22 Old 09-08-2005, 09:16 PM
 
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I teach students with ASD in a supported inclusion model. There are quite a few of them who have had motor/feeding/suck/latch issues from the beginning. One boy's OT and mother decided to allow him a chewie all day when he needs it, and it has improved his oral strength.

PECS is good if his communication is really low. you want him to always know that communication is IMPORTANT and worth working on! autisitc kids can go in 2 different directions-- learning that communication is frustrating and giving up attempts and retreating inward, or learning that communication gets me what i want, so i should keep trying with this hard speech stuff! PECS and signs can get rid of some of the frustration and comvince them that communication helps them get what they want.

push HARD to get every bit of your services as soon as possible. in special education, the squeaky wheel goes the furthest. a teacher can beg and plead on a child's behalf, and nothing is done, b/c we don't h ave any legal standing. if a parent is the one insisting, there's a larger legal threat looming in the background.

for example, when he gets some speech you might decide you want him in an inclusion program, not a self contained class. it's REALLY hard to address social skills for asperger's and somewhat higher-functioning autistics in self contained classes. our model has found that extremely supported inclusion, with a LOT of social support and a safe "home-base" classroom helps the ASD and general ed kids. now, MOST school districts don't have a model this supported, and it's really the parents who can push the hardest.
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#19 of 22 Old 09-08-2005, 09:24 PM - Thread Starter
 
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Altair- thanks for your input. At this point, he gets speech at school, but the therapies I mentioned are all separate from school. I'm mostly using school for extra help and social interactions, not the actual therapy for now. He's got 2 full years of preschool, so we decided to do the self contained classroom for one year and the integrated room the 2nd year, mostly b/c he's never been in a setting like a classroom-he never did well at the gym daycare and has never been in another daycare.

What grade do you teach?

Michelle -mom to Katlyn 4/00 , Jake 3/02, and Seth 5/04
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#20 of 22 Old 09-09-2005, 01:27 AM
 
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Quote:
Originally Posted by Altair
I teach students with ASD in a supported inclusion model. There are quite a few of them who have had motor/feeding/suck/latch issues from the beginning. One boy's OT and mother decided to allow him a chewie all day when he needs it, and it has improved his oral strength.

My 2yr old ds who is going through evaluation period right now (probably PDD-NOS with some sensory issues) definitely had suck/latch issues and later feeding issues.

may I ask what a "chewie" is?
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#21 of 22 Old 09-10-2005, 05:43 PM
 
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Quote:
Originally Posted by shelbean91
Altair- thanks for your input. At this point, he gets speech at school, but the therapies I mentioned are all separate from school. I'm mostly using school for extra help and social interactions, not the actual therapy for now. He's got 2 full years of preschool, so we decided to do the self contained classroom for one year and the integrated room the 2nd year, mostly b/c he's never been in a setting like a classroom-he never did well at the gym daycare and has never been in another daycare.

What grade do you teach?

i like the idea of starting in a more controlled environment and moving outward. it's even better if one of his teachers from the controlled environment can be there to help "include" him in the inclusion class.

i hadbeen teaching 5th grade for awhile, but i just switched to teaching mainly science and social studies for kids in K-3 this year. (I also do some of the social development intervention activities). i LOVE it!
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#22 of 22 Old 09-10-2005, 05:51 PM
 
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Quote:
Originally Posted by jaye
My 2yr old ds who is going through evaluation period right now (probably PDD-NOS with some sensory issues) definitely had suck/latch issues and later feeding issues.

may I ask what a "chewie" is?
in short, anything non-destructible that the child can chew on. you can make/find your own, or there are autism-specific companies that have different options. you might want to ask the OTs at your school system what they use. (or your EI OTs, if you have them)

some kids just need constant gum or candy. (so of course then it's a struggle to find something natural (no dyes, not too much sugar) that doesn't affect the kid negatively). some of our parents want us to use gum/candy in a pinch. just having something in their mouths helps build strength and gives them the sensory input they are craving. when an ASD kid gets enough sensory input, they can focus better on what's going on around them. (whereas a non-ASD kid would be distracted by the new sensory input).

some of our kids wear little rubbery things on a necklace under their shirts. when they need to, they just pull it out and chew. it calms them and keeps them from getting an overload of information. some parents don't like how this looks, and worry it makes their kid look "weird" in front of other kids (some chewies make the kid drool a little more, and that makes the parent uncomfortable). other parents want us to teach the child to use the chewie only at certain times. other parents are fine with it being used whenever the child needs it, and OF COURSE we explain to the other kids that we all have different needs and do different things to make ourselves feel good and work our best.

(it's the same theory as deep pressure, rocking, brushing, etc. whatever works for each individual child to give enough sensory input so that the child can pay attention to other things) the oral strengthening is an added bonus.
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