RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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I think that "severly autistic" does not necessarily mean LFA. LFA implies both cognitive and speech delays. Furthermore, I think that a lot of kids your daughter's age can improve significantly with help. The psychologist may just have meant that she displayed many of the symptoms of ASD listed on the DSM or that certain of her behaviors were pretty severe.

Regarding selective mutism, it really has absolutely nothing to do with intellect. There seems to be a higher rate of selective mutism in kids with ASD and AS than with neurotypical kids, but it does not mean that the child is or will be LFA.

http://www.sciencedirect.com/science/ar ... 670963433X

Check out the article above. 76% of the kids in the study with selective mutism showed improvement with the use of fluoxetine (Prozac). My older son's selective mutism was cured with Prozac.

Unfortunately, for my older son, putting him on Prozac wall like wiping grease off a camera lens. We could see all of his other issues more clearly without the SM interfering with his ability to be properly diagnosed and treated. I believe about 20-30% of kids with selective mutism also have speech disorders, like my older son.

I had selective mutism as a child and ended up with five academic scholarships, including two to law school. (Okay, one of the law school scholarships was also for an essay that I wrote about having epilepsy). My older son with classic autism has an overall IQ of 98,(average, not ret*d) and many people used to think that he was "gifted" due to his hyperlexia and artistic talent.

I think that effective treatment of the SM will help you figure out exactly what you've got.

Hi,
I'm new here and tomorrow we have an appointment at the Autism Center here for our son. He was diagnosed ASD at age 3 (though close to his 4th birthday) along with SPD, low muscle tone, developmental coordination delay, and a speech delay. He was in preschool at age 3 (PPCD) where he did okay although after a while he didn't do so well and started mimicing others in his class.
DS was still in the 3 year old PPCD class when he was medically diagnosed. The district told us they'd want to test him too but they would do it over the summer. Summer was almost over and they did not do a thing. In the mean time DS had started private speech therapy and physical therapy as well as neurofeedback therapy that seemed to help him tremendously as well as his change in diet.

The district wanted him in the PK PPCD classroom but we felt that being in a NT environment would be more appropriate for our DS so he started PK and got pulled out for speech therapy only since the district never bothered to test him after all. And when they did, they treated him as if he had a low IQ. At his vision test he was having problems because they wanted him to point at a picture board while he was fully capable of telling them what letters he saw.

He was also in a bilingual PK class and his teacher did not want to treat him different than the rest of his class after I asked her if she could help me implement a behavior chart. We went to the principal who agreed with us. My DS hated going to school and it was so stressful for him that his behavioral pediatrician told us to pull him out of that school since he was only 4 years old and that he does not need to be in such a negative environment. Every day DS came home from school his teacher told me nothing but negative things. It was awful.

We pulled him out of there and put him in a private school and he did awesome there.

Fast forward 6 months, we moved to a different state and we decided to keep DS at home for the remaining PK year.

Now, he started Kindergarten in August and according to his teacher he does really well academically and he is very smart. But that he has problems with geometry. He is an early reader and with that he is ahead of most of his NT peers despite his birthday being late June.
He still has a speech problem but he is currently getting speech therapy twice a week for 30 minutes. 1 time with another student and 1 time individual speech therapy.

His behavior is a huge problem but at least his teachers are understanding and keep redirecting him. But his behavior is still disruptive at times and he has difficulty with transitioning and staying on task.

We have an IEP meeting next week and I'm nervous about it. I just want things to go well for him for once.

Tomorrow we have a meeting at the Autism Center after we requested a re-evaluation although I'm not keeping my hopes up that they will. It seems to me that they want us to solely rely on the school district while we have really good insurance. My DS got referrals from his last behavioral pediatrician for neurofeedback, physical therapy, occupational therapy and speech therapy all paid for by our insurance. He also had a referral for ABA therapy but because we were so close to moving out of state we weren't able to complete the process. I do know that here they require an updated IEP in order for supplemental insurance to pay for ABA therapy but since we don't have that yet we weren't able to get that started.

Anyone else with a child similar to mine or been in my shoes before? My son is a happy child. I know they are doing a great job at his school because he enjoys going to school and comes home happy most of the time. He actually started singing and conversing more with me despite his speech delay. I even have him ride the bus to school and from school and he does fine!

He has good and bad days. Yesterday he had a great day, today it was not such a good day because he was not cooperating, disruptive, wouldn't keep his hands to himself, or stay on task.

When he was diagnosed he wasn't able to talk as well as now and his behavior was much more extreme but he is a really calm child most of the time but just more sensitive, if you know what I mean.
We have visited the Autism Center a few times and they were not able to tell us if he was really on the spectrum, or maybe it was Aspergers so we are going in for a reevaluation tomorrow (I hope).

Any words of advice? I'm pretty overwhelmed and nervous because I just felt the social worker we had to see before we could see a Dr. was a big bad bully.

TIA!

Momoftwoboys1980:

I would suggest that you check out my YouTube channels for information, particularly the "favorites" section of the Autistic Kids Channel. (Everything is free; basically a bunch of scholarly videos by professors at Yale, doctors, teachers, etc.). Each of my channels basically has infomation for parents in the "favorites" and "comments" section and helpful links to other channels in "friends" and "subscriptions." The "playlists" section on each channel basically has tutoring aids and things that the kids can use themselves.

The "links" page on my website, www.freevideosforautisticids.com, has some links to free e-books and educational games.

See links to my channels below.

Before your ARD, I would suggest getting organized. Make copies of everything that you want to discuss at the meeting, put a table of contents on top, and type up a (brief) list of questions, concerns, and things that you want. Make sure that anything that is important to you gets into your IEP goals--not just orally gone over.

Also, you can call another ARD meeting later on if new information comes up or there is a need for one.

What city and state do you live in? You might be able to get more specific advice if you share that information.

Good luck!

blondeambition,

Thank you for the tips. I have been reading some threads here on the forum for the IEP strengths and needs and found that very helpful. We are in Atlanta, Georgia. Thank you for the link, awesome job for putting that together! It is very helpful.
I've been in touch with the special education teacher (speech teacher) a few times and she seems very proactive and helpful regarding my son as well as the school psychologist. They know that we have an appointment coming up soon and the special education teacher told me that is why they want to try to hurry up to schedule his IEP meeting so we can figure out what services are appropriate for my son.
His teachers are awesome too. He is mainstreamed and I believe his Kindergarten class has about 16 students plus a teachers assistant whom my son according to his teacher really loves. She told me that the TA is the only one to keep him focused. I feel like he is in a good school though unlike the one he was at back in Texas.

My son developed normally until the age of 2.5 and after that he kind of stopped which is probably why his Dr. in Texas diagnosed him with ASD right before his 4th birthday, but we believe he does not have full blown ASD. Because he is so smart it is probably more difficult to detect that he is on the spectrum but people definitely notice something when he has a meltdown when he doesn't want to do something or wants something.

Momofboys1980:

It sounds like you have a good school situation set up!

I live in Austin, Texas, and just got a notice in my son's backpack that his school district has failed to meet No Child Left Behind standards in math and reading for the third straight year. Therefore, the school district is being put on level 2, whatever that means. We are in Austin Independent School District. The budget was just slashed before this school year, despite the school district failing to perform adequately on this standard. Unbelievable.

There are 21 kids in my son's second grade class, two of them boys with autism. There is one regular ed teacher, and special ed support comes in twice daily to help both boys as needed.

My son is being tutored heavily at home and is doing great. The other boy, not so much, according to my son. The other boy would be AS, I think.

Anyway, out of curiousity, what part of Texas are you from?

blondeambition, wow! Believe it or not but I believe the situation there in Texas! But so sad to hear that. We lived in El Paso, Texas and while he had excellent therapists and doctors out there, the educational part was not good for him at all there. At the elementary school we were zoned in, the PK only had bilingual classes. Well, we are not ESL. My son does not speak understand Spanish (nor do we) and we think that his teacher's accent might have thrown him off too. That, and the teacher speaking Spanish every once in a while because of it being a bilingual class.

We talked to the principal and I asked about a para professional and he said that absolutely not possible. His PK class had 20 students and only 1 teacher! We are definitely in a MUCH better school situation for him right now. His school now is a Blue Ribbon school and a Title I school with scores above the national average. Their curriculum is so much better than what he had in Texas. I spoke to my friend whose daughter is still there and asked her how it is there and it is still not a good school or district. Apparently all the PK teachers from last year quit or got fired and they were in the process of electing a new principal! This is a brand new school that just opened in 2009! I am so glad we took our son's Dr. advice to pull him out. We put him in a private school after that for a short while and teachers there were commenting on how we are doing a great job with him.

Here, before we even registered our son in this school we toured the school and got to talk to the principal. We were told that they try to mainstream students who are autistic or have autistic tendencies but they also have an inclusive classroom if the student needs it.
My son really seems to enjoy school. He loves going to lab and work on the computer, he loves music class and picking out books at the library. He seems to have problems with understanding games during PE though but for math he goes to a different classroom because it's according to the student's level and I couldn't believe it when his teacher told me that he is ahead of the rest. He can be disruptive during phonics but I wonder if it is because he is bored. His teacher even offered to make a different behavior chart for him when she realized that it was just too hard to understand for him which shows that she really cares about his success in Kindergarten. My son told me that he did not like his teacher in Texas but here in Georgia he loves both of his teachers. He comes home a happy camper every day which was not the case exactly 1 year ago.

I checked with our pediatrician and he would not endorse Prozac until my daughter is 12 (this might be an Australian regulation?). I wanted to see him about other ADHD drug options (i.e. Strattera) but at this stage we'll stick with Ritalin. Thanks for the link, I'll show it to my wife.



You know I've come across three cases on youtube of female HFA individuals who were mute up to about 5 and then by 7-8 they started conversational English. Amazingly the outcomes were all favorable and they were basically high achievers (much like yourself) when they posted their youtube videos. I also know a HFA boy of 13-14 who is in a school gifted program who also falls into this profile of being nonverbal for all his early childhood.

These stories give me hope.

The deal is that I was selectively mute--I could talk at home. The lack of speech at school and public places was due to a sort of extreme social phobia. (I have some selective mutism videos on my speech channel). I may have had speech issues, too, but I only saw the school counselor a few times and never received professional medical care.

I simply grew out of it completely by age ten. I still had a lot of social anxiety, but not to the point of making me unable to speak in public. Public speaking still makes my voice shake a lot,, and I need an anxiety med before I do it if it is going to be any good. I'm now forty and have changed a lot since childhood.

My older son with classic autism had selective mutism, a severe speech disorder, and classic autism. His speech with me at home was poor despite intensive home-based speech therapy, but he was unable to speak at all at daycare due to anxiety.

I originally went to the neurologist full of hope that my son just had selective mutism, and I had read about use of fluoxetine (Prozac) to treat it. Giving him the drug really helped me work with him and make a lot more progress, but it was clear that his understanding of speech and ability to use it was severely impaired, on top of having the severe social anxiety disorder known as selective mutism.

Regarding the doctor not giving out Prozac until the child is 12, that could be an Australian thing or it could be the doctor. I seriously doublt that my son's pediatrician would be willing to prescribe psychiatric drugs. She referred us to a neurologist to handle my son's issues. We saw the neurologist for a while and then switched to a child psychiatrist for medical management. Here, people mainly use either a pediatric neurologist or child psychiatrist for drug management. The child psychiatrist doesn't counsel like a psychologist--he just prescribes psychiatric medications and refers patients to other medical help as needed.

Ahh sorry, I didn't pick up "selective" in your post.



Is he able to ask you for things?



This is a very sensitive issue for us as parents. 12 months ago I wouldn't have dreamed giving Ritalin to my daughter, but now we seem not to have a choice.

Our pediatrician may pass us along to a nuerologist if we insist on seeking drug therapy for my daughter's anxiety. But to be honest I'm in uncharted territory and have no idea what to expect.

http://youtu.be/IuN1iPiWP7o

See the above link to a news story about selective mutism featuring a child who was probably more like me.

My son's selective mutism is completely gone, and his speech is pretty good at this point. (He's seven, and he was first put on meds for selective mutism just before age 4). The selective mutism abated within weeks of starting treatment, which is typical, from what I've read.

Using speech correctly and understanding everything has been a much longer process for him requiring intensive home-based speech therapy. His IQ was 70 on the information retrieval portion of the IQ test, borederline "mentally deficient;." Therefore, he does have an identified cognitive impairment,, which I never had.

Also, I read your post about your daughter's echolalia (repeating phrases from TV shows, movies, etc., all of the time). That sounds very much like my older son with both classic autism and a history of selective mutism. Basically, I was able to make huge progress with him by working very hard and consistently on each of his issues. There was magic bullet that cured everything at the same time.

I don't think so. Autism is not a measure of intelligence. I have encountered people on the autism boards who describe some very sever symptoms (including not being able to speak) who are often among the most articulate members of the board.

Interesting. I wonder if I would have qualified as "selectively mute." When I was a kid I didn't really talk to anyone I didn't know, I had a lot of anxiety. For example I could not order food in restaurants. The first time I did it I think I was about 12 or so, on a class trip. We stopped at McDonald's for lunch and this other kid was supposed to be getting my food and was taking forever. So I just went in and ordered myself. I had slow progress after that...eventually working counter at a fast food place, working as an English teacher, and fronting a band.

Yeah I agree

Thanks BA
You certainly a great source of information cheers!

The lure of a big Mac is mighty powerful (for me anyway!). My little one gets highly animated at the lure of McDonalds fries; if anything could get him to do something that would be it

Maybe you were selectively mute. I just mainly know that I had to go to school counselor's office several times for not talking in first grade. I would just sit there and not talk to the counselor either. When I told my mom about it, she told me to tell the counselor that I didn't want to go. I told her that I didn't want to see her. Then I didn't have to go anymore.

I think that people at the school figured that something was wrong but didn't know what it was or how to deal with it and just gave up. My parents worked very long hours and have always been pretty clueless.

Regarding selective mutism, the president of the local chapter of the Autism Society has it in her family. Social anxiety disorder has been identified as a fairly common comorbid psychiatric condition.

At the birthday party I attended in July, mainly attended by high functioning kids with classic autism, selective mutism seemed very prevalent. I mean, other than a couple of AS kids talking about the emergency exit sign and a couple of kiddos who were being promted to speak,, it was very quiet around the table where cake was served. Most of these kiddos had speech delays but were capable of talking somewhat. The twin girls that I was seated next two didn't even want to ask their mom for seconds of cake or juice--they just tried to get more by handing her their plates and cups. I had heard these girls talk before--speech delays, but they could speak.

Anyway, I think that more research needs to be done on the prevelance of selective mutism in autistic kids, especially since selective mutism is highly treatable with meds, and, in my experience, getting rid of this comorbid condition can greatly facilitate proper diagnosis and treatment.

I saw the twin girls today (aged 11) who sat next to me at the birthday party in July, and they talked pretty well today when they came over to my house with their mom to borrow some things. It was clear that they were speech delayed, but were much higher functioning than they had appeared at the birthday party. Part of my theory or selective mutism/social anxiety being a contributing factor in some cases....

Last edited by blondeambition on 24 Sep 2011, 1:45 pm, edited 1 time in total.