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3 year old with Autism only repeats words

post #1 of 16
Thread Starter 

First of all this is my first post and would really like some tips or just other parents experiences similiar to mine. My son will repeat words when prompted but he still has NO spontaneous speech:( Not even mama or dada. He just started preschool at Early Childhood Developement and is also getting ABA 2 hours per day. Ive heard some kiddos on the spectrum do start talking once in school and typically around the age of 4 or 5. I would give anything to hear my little man start talking!!

post #2 of 16

Hello and welcome, LovemyJax! I'll share some of my story with you. My son was echolalic and had no expressive language. He had so many words and phrases memorized that it wasn't until he was nearly 3 that I realized he had never spoken anything original and had to be prompted to say anything like "I love you" or "mommy". I contacted our local Early Intervention office and started him at a preschool for children with special needs.

 

My son was later evaluated by a speech language pathologist who informed us that our son had a speech deficit (as opposed to a delay). He also had motor planning and processing issues (among many other things). Unfortunately, there was a very long waiting list for speech therapy, but in the meantime, she suggested occupational therapy may help him with his speech. Because of this being a deficit, she said that it wouldn't improve on its own and that we needed to get him started with something soon. She said the issues related to helping him get the expressive language out was comparable to his brain getting his body what he wanted it to do. I should also add that she mentioned the good news-- that our son used his echolalia to communicate. If he was happy, he used phrases that he associated with happiness. If he was surprised, he would use phrases he knew were associated with being surprised. With this, we understood that he was trying to reach out, but couldn't quite figure out how to make it happen.

 

He started occupational therapy around the same time we started a gluten-free, casein-free diet. Spontaneous language began to appear while the echolalia began to slowly decrease. I'm not saying this combination would work for everyone, nor which helped more, but this is how it happened for him and we weren't up for experimenting with which of the two might have worked best. That said, at 5 months of him eating strictly gluten- and casein- free, his expressive language exploded. Coincidentally, his bowels were vastly improved at the same time of his language improvement. This was also around the time that he was diagnosed as autistic.

 

Eventually we did get him into speech therapy, and he still had a ways to go; he couldn't quite figure out how to speak in first person, for instance. Seven months into speech therapy we began the GAPS Diet, at which point we saw many more improvements. His language became conversational, which it had never been. Within a few months, he no longer needed speech therapy.

 

It's been about 10 months since his last speech therapy session. He now has conversations with anyone who'll have one with him. He does have a little trouble pronouncing words that begin with L or R, but we were told not to be too concerned with that until he's 7 (he can say them clearly if he slows down and focuses on the sounds). We're also told his vocabulary is well above his age level, and at this point he's quite fond of verbally expressing himself and interacting with people of all ages. He also no longer qualifies for special education services and no longer has an IEP.

 

This was just our story, and everyone has their own stories and situations. When I prepare presentations regarding our experience, I credit much of our success to the combination of therapies and dietary intervention. When he was "catching up" with certain areas of development, my husband and I were relieved that he was under the watchful eyes of his various therapists to help him grow in the right directions. Like I said though, everyone has their own situations, so follow your gut with what feels right for yours. :)  Best wishes to you and your son!

post #3 of 16

Have you had his hearing tested? Our daughter's speech improved with tubes to stop chronic ear infections, which improved her hearing, and also a change to a gluten free casein free diet, not to mention removing other food allergens and controlling her asthma with medication and air purifier.

post #4 of 16
Thread Starter 

Thank you! We have tried EVERYTHING! We have seen a DAN doctor and put him on supplements with no progress. We have also tried the GFCF diet with no progress. My son doesn't have any "gut issues". Im hoping school and continued ABA therapy will get us there. Thanks for the feedback:)

post #5 of 16
Thread Starter 
Quote:
Originally Posted by Tara L View Post

Have you had his hearing tested? Our daughter's speech improved with tubes to stop chronic ear infections, which improved her hearing, and also a change to a gluten free casein free diet, not to mention removing other food allergens and controlling her asthma with medication and air purifier.

Yes we have had his hearing tested. No problems there.

post #6 of 16
Quote:
Originally Posted by LovemyJax View Post

Thank you! We have tried EVERYTHING! We have seen a DAN doctor and put him on supplements with no progress. We have also tried the GFCF diet with no progress. My son doesn't have any "gut issues". Im hoping school and continued ABA therapy will get us there. Thanks for the feedback:)

I usually forget to clarify this... my son didn't appear to have any gut issues (I'm not saying yours does). He wasn't constipated nor did he have diarrhea; my main concern was that his stools didn't have what I considered a "good" consistency-- whatever that means. All I knew is that it seemed somehow wrong to me. Whenever I expressed my opinion about this, everyone told me I was looking too much into it (I guess literally and figuratively lol). Incidentally, at this point I didn't even know that gut/BMs could be indicative of anything. Anyway, we figure it took 5 months for the gluten to exit his system (I had read it can take from 6 - 9 months) and that may have been why my son had the major expressive language improvement at that time.

 

By the way, please don't take this as "it has to be diet!" as it may not be that at all for your son. :) We didn't have ABA offered to us, but I hope it helps your son! Best wishes to you both!

post #7 of 16
Are you able to have your son receive additional ABA therapy? My son has been receiving ABA therapy for 5 months, and although he is verbal, I've had the opportunity to interact with many of the kids in his clinic (I'm no expert, just an observer). I have been extremely impressed with the amount of spontaneous language some of the kids have developed just in the time we've been there. Just last week I saw a boy who was "nonverbal" just 5 months ago yell out one of his therapist's names when she entered the room (she didn't even see him at first), gave her a hug, and said "hi". To me, this appears to be huge progress over where he was a short time ago. However, many of those kids are receiving 30-40 hrs/week of ABA.
Initially, I was hesitant about ABA (because of the "animal training" comments I read on the Internet), but the things he really needed to work on to enable him to learn (sit still, pay attention, follow directions, etc) have really been helped by ABA and his other therapists (speech & OT) are amazed by what they are able to teach him because he can actually sit still and focus for periods of time.
I'm assuming that you've seen a developmental pediatrician, but in my area it can take over a year to receive an extensive evaluation. Our DP was able to help us put together a therapy "game plan" with the understanding that there are only so many hours in the day.
Good luck! I know it's not easy, but I think one piece of advice I'd pass along is follow your gut and find new therapists when things aren't working. All therapists do not have equal skills and just because a therapist has worked for one of your friend's kids doesn't necessarily mean he/she will be a good match for your son. It took me a few "tries" to find a speech therapist that brings out the best in my son.
post #8 of 16

Just thought I'd reply to this old thread. I'd strongly urge more research when discussing the gluten free diet. Not a single medical study has confirmed whether the diet truly works. You can read more from webmd here: http://www.webmd.com/brain/autism/gluten-free-casein-free-diets-for-autism.

 

Second, here is something that absolutely does work (albeit, it is difficult to do in practice):

http://teachmetotalk.com/2008/06/02/echolaliawhat-to-do-about-it/

 

This article was an eye-opener. Granted, we've only just begun to put it into practice. I will say this: it is very...very...hard. But for our children with autism, nothing is ever easy.

 

Hope this helps others.

post #9 of 16

With all due respect, what researcher would find funding (provided by drug companies for the most part) to do a study on the efficacy of gluten free/ casein free diets for children on the spectrum?  I don't see a drug company lining up to fund it. 

 

However, there are scores and scores of anecdotal descriptions of gluten and casein intolerance effecting sensory modulation and cognition in children with learning and developmental challenges.  There has also been some small scale studies by highly regarded neurologists, one in particular, named Dr. Martha Herbert, who tests brain wave functioning with food challenges and can note changes in the brain when it is exposed to certain foods.

 

I am highly suspect of someone who comes on a board to challenge well accepted notions in the autism community about food and it's effects on cognition and developmental progress and lists the most conventional website ever, webmd, to support their thesis.  Even my child's pediatrician has heard enough from families whereby it makes her very curious about dietary changes and their impacts.  And she is one of the of authors of a well known book about children who have learning and developmental differences called "quirky kids".

 

Every body has a path to follow on the journey toward helping their child.  I would never try to dissuade someone from changing their child's diet.  It's often the first place I think people should start!
 


Edited by livinglife - 4/13/13 at 4:15pm
post #10 of 16

PS - Quirky Kids is a great book! Hoping my lil Matthew (pictured with me) sorts out all the kinks and is able to really overcome a lot of the hurdles set before him. If anything the book gives that glimmer of hope that for my lil twin, he'll find his groove and it'll be all good. :)

post #11 of 16

Hmmm, I'm just reacting to your language which was dismissive of an awful lot of the conversations that take place on this board.  I am sensitive to these conversations because of the enormous amount of work and effort it takes to stick with dietary changes and the emotional turmoil parents often go through, myself included, before undertaking a dietary change.  I don't like to see it dismissed for "lack of evidence" from someone who seems new to these discussions.

 

I mean no disrespect, only, politely suggest you not dismiss something, because of "lack of research studies" or try to dissuade anyone else from doing so either.  I was pointing out that I don't even hear that from my child's doctor who is very curious about such successes.

 

I've had the good fortune to speak with Dr. Herbert before by the way who lives and works in my area.  I am aware that she advocates something similar to the gaps diet which you can research further online.  A gluten dairy free diet is usually the first place however that people begin on their journey in making dietary changes to help the brain and often it gives people enough "proof" of their own that it's helpful, that, if further change in thinking or health is sought, people go further. 

 

If you reread Dr. Herberts own anecdote that you listed, you'll see that that is indeed what she notes, not, that gluten and dairy free diets are ineffective, but, that they often don't go far enough.  Other well known physicians have written about why, Dr. Martina McBride being one of them, who suggests that bad bowl flora is the root and why eliminating sugar is also helpful to many.

 

Listen, I am as earnest as the rest of us here, in looking for solutions that can help children who are on the spectrum.  Earnest, but I certainly don't know it all.  I only know what has helped my child, and absolutely none of what has helped came from a research study or a doctor. 

 

If you prefer a "doctor's" advise then seek out a DAN doctor.  Personally, I have learned a GREAT deal on this board reading about other's successes.

 

Good luck on your journey.  I have nothing else to add....

 

All the best.
 

post #12 of 16

I just wanted to remind everyone of our name calling rules, and I'd also like to ask everyone to give other posters, especially new posters, the benefit of the doubt regarding their reasons for posting. 

 

We can all learn from and be teachers to each other, even if we disagree.  It makes us reach deep to defend our own point of view.  :)

post #13 of 16
Quote:
Not a single medical study has confirmed whether the diet truly works

This is, actually, not true. There is a study, I cannot cite just now, since DH just came home and I need to go offline, but you'll find it, I guess. It states that there are kids who are sensitive to certain food allergens, and if they are, they improve with diet. 

 

They suggest that every child on the spectrum is screened for intolerances including gluten with a blood test, and if there are, than put on a diet to see if there are changes. They state as well, that there is no evidence of the benefit of certain diets, if there is no sign of intolerance. 

 

I'll find the study tomorrow or on monday, if nobody else does, I read it quite carefully and had my kids tested. No sign of intolerances. Don't know if that is fortunate or not, since I could have done something, and now I can't. 

post #14 of 16

Here, it's this one: 

 

http://www.ncbi.nlm.nih.gov/pubmed/21550472

 

Lancet 2011, May 7;377(9777):1567-8 Restricted elimination diet for ADHD

post #15 of 16
Quote:
Originally Posted by Meltron View Post

Just thought I'd reply to this old thread. I'd strongly urge more research when discussing the gluten free diet. Not a single medical study has confirmed whether the diet truly works. You can read more from webmd here: http://www.webmd.com/brain/autism/gluten-free-casein-free-diets-for-autism.

 

Second, here is something that absolutely does work (albeit, it is difficult to do in practice):

http://teachmetotalk.com/2008/06/02/echolaliawhat-to-do-about-it/

 

This article was an eye-opener. Granted, we've only just begun to put it into practice. I will say this: it is very...very...hard. But for our children with autism, nothing is ever easy.

 

Hope this helps others.

 

The Teachmetotalk.com definitely has some great strategies - especially the modeling which is so important to children on the spectrum.  Another good one is "More than Words," which provides strategies to increase social communication skills.  It is amazing the difference you can make by keeping your child self-regulated and creating engaging activities in your daily environment that help to promote social communication.

post #16 of 16
Quote:
Originally Posted by Triniity View Post

This is, actually, not true. There is a study, I cannot cite just now, since DH just came home and I need to go offline, but you'll find it, I guess. It states that there are kids who are sensitive to certain food allergens, and if they are, they improve with diet. 

 

They suggest that every child on the spectrum is screened for intolerances including gluten with a blood test, and if there are, than put on a diet to see if there are changes. They state as well, that there is no evidence of the benefit of certain diets, if there is no sign of intolerance. 

 

I'll find the study tomorrow or on monday, if nobody else does, I read it quite carefully and had my kids tested. No sign of intolerances. Don't know if that is fortunate or not, since I could have done something, and now I can't. 

 

For anyone else who decides to perform research re: gluten, you shouldn't just focus on autism but look at neurological disorders.  I met a woman at a restaurant a few years ago who was interested in why my ASD children were on the gluten-free, casien-free diet.  She shared her story about how she suffered from a neurological condition which almost caused her to be institutionalized.  She went to an allergist for some unrelated health issue who discovered she had celiac disease.  When she removed the gluten from her diet, all of her neurological and health related issue went away.  It really emphasized to me that when we are treating our children, we must look at the whole child for the best outcome.  For those who are doing research, www.autism.com can offer more information.

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