Autistic symptoms early onset

Hi everyone, I know my twins don't belong in the 2-4 forum yet but I was wondering if there are any of you out there who have autistic children and if you noticed any things with them while they were little?

I have known that there is something not right with my one little man since we brought him home from NICU. He has always seemed like he was somewhere else. Doesn't focus very well and doesn't respond to voice all the time. I always said that if he was a teenager everyone would think he was stoned all the time because he always looks dazed and confused. At first no one took me seriously and a while ago the OT and our new pedi decided that maybe there was something there. At first They told me they thought he was having problems hearing and sure enough he failed all four hearing tests but now that he had his tubes put in things haven't changed at all. He has always had a huge oral motor fixation and would rather be chewing on something than playing or socializing.Also we changed his milk a few months ago and he did wake up a little when we put him on a milk where the casine is already digested. Changing the milk did make a big difference it was like someone turned a light switch on in his head and he came to life a little more and although he is better than he was he still doesn't seem right to me. They are not ready to give him any kind of diagnosis yet but they also don't think there is much that they can do with OT at this point so they cut him back to once a month.

I am frustrated and don't know where to go from here. I have gotten all the OT toys I can to help encourage cognitive function and stimulation but I feel like I am just waiting around for some kinda bomb to drop and I feel so helpless at times.

I guess I am wondering for those of you who's children were diagnosed with autism or somewhere on the spectrum. When did you first suspect and how long was it until you got a diagnosis? Thanks in advance for any info you may be able to provide.

 

You said that changing his milk made a difference, maybe it's all dietary issues?

 

My DS just woke up from his nap, but I'll come back later for a full post. My DS was diagnosed shortly after he turned 2. I started to realize that he wasn't talking, at all, when he was around 18 months old. I didn't suspect autism until a few months before he was diagnosed.

 

Thanks for your reply. I do think that diet has something to do with it and that is why we changed his milk and went dairy free. The pedi suggested that he might have problems digesting the casine in milk and that because he might not be digesting it, it could be going out into his blood stream and causing some of the fogginess.
With all the research I have done it is not uncommon for children with autism, add and adhd and other neurological disorders to have digestive issues as well so I am thinking these two are going hand in hand with each other. Even with being on a dairy free diet he is better but still not very social and he has an incredible pain tolerance which makes me wonder. Basically I think we wont know until he proves that he isn't going to communicate well and I don't know what to do in the mean time right now at 14 months he babbles a little but nothing that means anything at all. His brother doesn't really talk much either so that part I don't know what to think. :unknw:

 

I would love to tell you not to worry, but you are already there. At this point, 14 months, if you think something is "wrong", then you should have an evaluation done so you can get services for the boy(s). I would go ahead and have both children evaluated,just to ease your own mind if anything. The sooner services are started, the better the outcome for all children, not just those with autism. All Early Intervention programs are self-refer, so you do not need your Dr. to do anything. You just call and tell them you would like an evaluation. It's that simple. In my state, they have to evaluate within 30 days of referral, but that is different in all states. The first time I had my boys evaluated, one qualified for services and the other did not. I had to wait 6 months to have the other evaluated again, and he did qualify at that time. I do have to ask why your boys are having OT and who is deciding they do not need to be seen right now more than once a month. Do your boys understand what you say to them? Receptive language (what they understand) is a good sign that language will develop along normal developmental time lines.

I have posted a lot about autism since I have 3 (almost 4) year old twins with autism. I did know when my boys were less than a year old that something wasn't right. I was never afraid of autism or anything else being wrong with them I just wanted to get them the help they needed as soon as possible. At their 1 year Pedi appointment, I relayed my concerns to the Dr. and he literally acted as though I was crazy and paranoid. He told me the party line, ' they are boys, they are twins, they were slightly early, etc.' wait for them to develop, they aren't passing the early identification tests, but they are still within normal developmental limits. What made me sit up and pay attention was that my boys were both fairly interactive, seemed to be meetin all milestones, were babbling, etc until about 9 months. Then it just got really quiet. It wasn't sudden, it was slowly changing. As a matter of fact, I was the only one that really noticed at first. DH was not ready to think anything was amiss and didn't see the same things I saw at first. I think with him, he noticed the lack of eye contact, that was previously really good. They also rarely smiled at us, which they always did before. They still laughed and smiled, but they did so at noises and objects, not us.

When they were evaluated, it was simply for services to help them develop, not for a daignosis. It is very difficult, if not impossible, to get a true diagnosis of anything (except genetic disorders) before the age of 2 and many professionals won't do so until closer to 3. We had genetic testing done through our Childrens Developmental Services Agency, who runs Early Intervention in my state. Nothing was found. Anyway, as I mentioned at 12 months, one of my boys qualified for services through EI and one did not. One of my twins is a lot more "social" than the other, and I beleive this pushed him over the edge at that time. We had him re-evaluated 6 months later( that's how long you have to wait) and he not only qualified, he was behind his twin developmentally.

Now my boys are nearly 4 and are just now really getting both receptive and expressive language. They are still behind their peers, but it's music to my ears to hear them talk and wonderful to have them understand the things I say to them. Nathan can actually follow 2-step directions, which is huge! They aged out of EI at 3 at which time they entered the Public School System. They are in an autism-specific pre-K program and it is wonderful. They have progressed so much since they entered school in August, it is amazing! They are super boys, they are just different. They have tons of potential and are extremely intelligent. J is already doing Kindergarten math! They are happy, smiling, lauging, funny boys. They have really come "alive" in the past year and it is amazing to watch. They have always been super happy and a complete joy to us, but they are developing so quickly! You know, no matter what, development has to start from the beginning. They don't go from nothing to sentences over night, no child does! They literally had to learn how to make eye contact, how to play appropriately with toys, how to feed themselves- all much later than "normal". But the point is they are doing it!

I still want to say not to worry. Just do your best to get your children the assistance they may need if they need any. Don't let anyone tell you to wait it out. If you wait until they are 3, they have missed a lot of time. Time is very important. They could be slightly behind, get a little therapy and be just fine. You never know until you do something. And try not to think of your child or chidren as having something wrong! It is all just different and it's not all bad. Good luck with everything!

Kelly

 

If they are already in EI you can ask for a medical screening. I am in the process of having one done on my one son. He has been diagnosed with Sensory Processing Disorder. Basically, he becomes hyper-focused on toys and it's very difficult to distract him. You can call/scream his name and he is so into what he is doing he does not hear you. He passed his hearing test with flying colors. He also has what they call inappropriate play. For example, today we were playing with play dough and he was more interested in the container and got upset when I put it away. Anywhere we go he scopes out light switches and will do whatever he needs to do to get to them.

I would say it was when they turned a year something did not seem right. I always would say he was in his own little world. He recieves speech, DT & OT weekly. I had to fight for an OT eval because he was not progressing like his brother in speech & DT.

The reason I'm having the medical screening is because they go to a program twice a week and the teachers wanted to know if he had a hearing problem. He's basically doing the same thing at home at school. He'll get so focused on something that can't get his attention.

From what I've been told, he will be evaluated by a huge team of Dr's, nurses & therapists and it will take a few hours to complete.

Since starting OT, I have seen improvement but I just need to know if there is something else going on with him.

 

Thanks so much for your replies!!!!
Like I said I have always known that something was just not right and when he plays he is in his own little world and really chews on everything instead of playing with them.
To answer your questions:
KellyJ: My boys were refered to an early child hood development program right out of NICU and they started going to PT and OT at 3 months of age. We also got evaluated there by the Pedi(who happens to be the head of their autism team) and she is the one who suggested the diet change to me. She seemed concerened about his actions at that time and was the only one to validate my concerns. Since then we got more regular OT but since the change in milk and the increase in alertness they don't seem that worried about him anymore and of course the only answer I ever get is to wait and see. I have gotten him tons of chew toys from the SLP and OT department to help him stimulate his oral motor fixation and followed their advice to really jiggle him and stimulate him lots when we interact because he seems to get it then. It was the OT herself who decided that he didn't need to be seen as frequently anymore. He has reached all of his physical milestones but developmentally he is way behind his brother in my opinion. He doesn't seem to understand much when you are talking to him. He gets it when you are trying to make him laugh but otherwise its like he doesn't even hear you. But he does cry when you tell him no but he gets histerical at times which I none of my other kids have done. I try to play peek a boo or patty cake with him and I can't hold his attention long enough for those games. I guess I just feel like there could be something else I could be doing for him instead of waiting around another year. We go to see our PT and OT next week so I will see again if there is more that we can be doing. He does smile more and even laughs now which he never did before but he still lives off in his own little world. As for his brother I have had tons of concerns about him too but he is totally at the opposite end. His brother always had a problem with being way to over stimulated which is gradually getting better as well and had a hypertonic muscle tone which has caused him to be a little slower with his mobility but he has grown leaps and bounds over the last few months.

cjk2002: Thanks for your reply, My son is doing some similar things and I have asked about sensory disorders but they are not willing to talk about it yet. How long did you have to wait for them to tell you that?

Are there any good books you guys could recommend??
I am a nurse and I am prepared for whatever comes my way but I think that sometimes being a nurse makes me more prone to looking into things too much. I find it hard where to draw the line and when to beleive the professionals because I don't think they always beleive me.

Thanks so much for your stories and advice I really appreciate it as I have been dealing with this mostly myself and I am starting to drive my self crazy about it.

 

Has he had his hearing checked again since getting the tubes? Have you tried any kind of signing with him? I'm not saying it's NOT autism or some kind of sensory processing disorder, but I've seen and treated kids that are behind due to hearing loss which can become permanant with scar tissue and such. I'm glad to see that he's gotten better with the change in diet. I've known a few parents swear by gluten/casine free diets for both autism and add. Good luck with however it turns out and I hope that the therapists and Dr.'s will continue to work with you to figure it out

 

Thanks for your reply, I haven't had their hearing tested since they got their tubes in but I am waiting to hear when the next appointment will be. Also I never thought of signing but I will definiately look into that, do you know off hand of any good sights or books to get on it? I really appreciate the center where my boys go and we are really lucky to be there. I know they will continue to work with me but I have a really hard time finding the patience that is needed to wait and see.

 

I've heard good things about Signing Time. When I worked with a couple of little ones in EI, I didn't use one book in particular, but went with what the parents felt were important words for the kiddos to know and worked with the children and parents to learn them and then build consistency with it. I know that my Abigail is on her 3rd set of tubes and before this 3rd set, I had her hearing tested b/c I could tell she wasn't catching everything. She had a mild hearing loss. For babies if they have that fluid in their ears for awhile, it can definately present itself as being off in their own little world b/c they just aren't hearing the world around them or it's very muffled.

Patience is not my virtue. It's so hard having to go on other people's time lines especially when you feel something isn't right and you want to get to the bottom of it. I hope you get some answers soon so that you can move forward with whatever that may be.

 

My biggest piece of advice is to listen to your gut feeling. You would rather it be wrong than to wish later that you had listened. You know him better than anyone and if there is a problem the earlier he gets help with it the better. Do not give up until YOU are satisfied with the answers.

 

Same here! Totally agree! Ive been through so much with doctors, Peds and such throughout my entire life because of my Cerebral Palsy and you HAVE to keep asking and researching. Dont give up until you get answers. I hope it all goes well for you. You are in my thoughts. :hug:

 

I agree with Heather too! I knew my son was 'different' than others because I belong to a large play group of Moms with mostly boys at the time with age close to my son. My son was doing so well with blabbing until he quit altogether at 15 months old. It was just out of blue that made me question, what's going on here? So I waited until 18 mos because I wanted to see if he would improved but he did not while his twin sister passed with flying color. We did EI and offer ST but no OT at the time until he graduated out of services when he turned '3' last year. Here the ideas of what had happened to us per below.

The first 2 years it was like --
No responsive with Yes or No
No communication (back and forth)
Never look directly at us when we talk to him
He had 'odd' meltdowns
Prefer to wear certain clothes
His eating habit was so bad--we had to go backward because he would not chew/swallow his foods
Always (grudge) with pointing fingers on his needs/wants
Confused on what he wants for example (Do you want Apple or Banana?) and then would walk away from me

At 3 yrs old:
Still battling with 2-step direct and 2-3 sentences
Still had odd meltdowns
He cannot sit still anywhere (restaurants, at home, storytimes, and etc}

At 3 yrs and 3 mos (just before xmas):
He finally responds with a Yes/No with his needs/want
Occasionally have those odd meltdowns
Talking 4-5-6 sentence phases but still has 2-step direction
Communication somewhat need more work with back and forth (Doesn't tell me about his day or what he is thinking)
He still cannot work well with being in a large group (doesn't do what the instructor says when I take him to any free trial classes)

And then at 3 yrs and 6 mos:
His eating habit has improved so much now (chewing/swallowing)
Communication has improved and now he is starting to tell what he does when I asked him, what did you do?
Talking 4-5-6 sentence phases and a bit lazy on the 2-step direction
Finished potty training at last!

We enrolled them to preschool this coming Fall. Although, we are still awaiting for his 6 month re-evaluation (coming in May) for 'At Risk' Program. If he does qualify we think he'll be fine if we have him mainstream with regular preschool with his twin sister. I just think it took a lot longer to get him where he should be at with being a 'typical boy'.

I know the feelings too well with being impatience because of the nervous and the 'What If"; but I let it go and just focus on what we can offer and for him and continue with it.

Good luck to you!

 

When we had him evaluated for OT in September of last year they never really gave him a diagnosis. When they were evaluated for speech and DT in May 2009 that was my main concern with him but since they are not OT's they felt their therapies would be enough. After being in therapy for 4+ months and not seeing a lot of improvement that is when their DT told me about OT and it was presented to me as "well it can't hurt to get him evaluated". After the issues with his school, I pulled out the eval report and did some research on my own. His next OT session I asked if that is what he had and she said yes but then added that EI is not qualified to him a diagnosis and that is what the medical screening will do.

I have heard great things about this book but have yet to order it.

This website has been very helpful in explaining SPD.

Since introducing the swinging and crashing into his daily life, he has gotten better but still has issues with appropriate play. We started OT in December but because of the holidays and sickness, he only had 6 sessions so it's too soon to tell if what we are doing is enough.

 

Thanks I will check out that site and talk to PT and OT about it next week!

 

Thank you I totally agree!! I will keep plugging away till I get answers that work for my little man.

 

Thank you for sharing your sons progress with me. It is helpful to see that there can be progress made and I am happy to hear that he has been able to work through some of his challenges. I know that I can not cure whatever it is that may be wrong but I want to be able to work with it so that my son is able to handle the situations a little better. Good luck with your 6 month evaluation. I hope your kids do great in preschool

 

Thanks for the references!! I hope that OT is able to help find more helpful tips I know that mine was helpful in finding ways of how to wake him up a little in play but we are still waiting for more tips because we seem to be a crossroads. Best of luck

 

Thank you to everyone for your replies!!
This is such a great website and I am thankful that I can come here and find support and advice from those who are in similar situation. Thanks again I will be pushing for another evaluation at the center my boys go to.

I forgot to add that my son also will eat all day long non stop if we let him and some of his melt downs are because of food. Has anyone had a similar experience? I have always described it as its like his brain never tells him he is full. Some people just tell me I am starving him but honestly he will eat till he pukes and then eat some more if I let him. If we can distract him then he forgets about it but the minute he sees food he freaks out.

 

My boys were speech delayed and now one has caught up and the other is catching up rapidly. While I think you should have your son evaluated, keep in mind that kids can show signs of being on the autism spectrum when younger without necessarily having the diagnosis. Neither of my sons was pointing, talking or waving at 18 months. These are all red flags. I was worried about ASD, especially with my less social twin. But now we know he has an expressive speech delay, possible auditory processing issues and maybe a mild social delay, but he is not on the spectrum. He still gets ST 2x a week and OT 1x a week from EI. I think it has helped a lot!

I think about how worried I was about him not pointing at airplanes when he was 18 months. The screening they give you in the doctor's office (M-CHAT) asks about whether your kid points at airplanes. He finally started pointing aound age 2. Now every time he sees an airplane he still gets excited and points (to show me) and says "Airplane!" and it is so cute.

 

Two things that stand out to me that you said about your son he seems to not feel pain like other children and he doesn't seem to know when he is full and will eat all the time. That is exactly like one of my twins. As I said, they are so different! One is more social, very active,and hypersensitive to many things. The other used to be nearly oblivious to everything going on around him. He never seemed to react to pain and never seemed to know when he was full. I have to say their OT is the one that helped most with those issues ans so many others. One thing that worked for J's oral-motor issues was an electric tooth brush! The vibrations and chewing combined seemed to really help him get the input he needed. I also agree with the swinging and crashing into the couch or a bed. This really helped my boys both be able to focus on a task for increasing amounts of time. These sensory kids seems to need more "extreme" sensory input like jumping, bouncing, swinging around, crashing, etc.

I do not know how things work in Canada concerning Early Intervention. I do not know if there is a long wait for services, but here things happen fairly quickly when referred. Hopefully, there is something you can do to get services more quickly. As I said before, the sooner you start, the better. With sesnsory issuse, body awareness issues, etc., these kids can't seem to get out of their own sensory world to learn like they should. It is true that Sensory processing issues are very common in kids with Autism, but they can happen without autism and can often mimic autism in the very young. As a parent you have to push hard to be hear sometimes. I would not give up! Ask your Doctor to have a full evaluation for both boys, if he won't do it, look for someone who will. Don't expect anyone to diagnose a child at this age and none of the therapists like OT's are qualified to diagnose autism.

One book I can recommend is, "The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder" by Carol Kranowitz. This is a very helpful book to start with. There are SO MANY other books! I for one, am not a huge diet proponent as far as Casein and gluten free diets. However, some people think this helps their kids greatly. It did not help either of mine. My boys had a milk protein allergy when born, whih they have outgrown. From about 6 weeks to over the age of 2, they had no foods with Casein or whey in them at all. It was so bad that I used a lotion on their skin that had milk in the ingredients and they both developed a huge rash all over. Thankfully, they have outgrown it! Feeding my boys has always been a challenge with many texture and taste issues, so having that allergy made it even more difficult!

I hope you can get your boys the help they need. I'm confident that early intervention makes all the difference for so many issues in children.

My best to you!

Kelly

 

I forgot to mention that sign language did not help with my boys for the most part. Niether child was interested in signing at all. Getting their attention to teach a sign to them when they were little was horrible. They did learn some important ones like "more", "Help", and "all done". What is working wonderfully for my boys are picture schedules and picture signs. Just a thought.

 

Thanks again for sharing! The tooth brush idea is a great one that I never thought about before so I will definately try it!
Here in saskatchewan where I live it can be kinda hard to get into Early childhood program but we were lucky to get into one right out of NICU. The boys have been going anywhere from once a week to once a month depending on what the PT and OT think that week since they were three weeks old.But we only get to see the pedi at the center once ever 6 months unless we have concerns. I am going to reguest a team meeting when we are there next week to re evaluate the boys again. I don't know if there is something different they do but I am going to ask about it because so far we have only seen Pt, OT, SLP, and the pedi and they all talk about a plan together. This center is an excellent center but we have to drive an hour to get there because we live out in the country but I have been driving non stop since they were born and will continue to do so for as long as they need it. This program goes on for however long the kids need it and has a school attatched to it for special needs students. They have playschool and kindergarten and you are able to keep going as long as you need it and it is all free no matter if you have some kinda qualification or not. Its offered by our health region so we are lucky. Also we have a different early child hood intervention program that is sponsered by saskatchewan learning where they will come out to my hom twice a month and observe the boys, they have tons of tick sheets they fill out and then we develope a learning plan that we want them to work on. The only thing is that these people aren't PT's or OT's or may not have any credentials for that matter except experience working with kids. This program is offered in the home until the kids reach school age and then services flip over to the schools.

Also thanks for your input on the signing, I racking my brain thinking how I would get my son to pay attention long enough to get what I am trying to do. I will still try it but may also give the picture cards a whirl. The boys have a PT and OT apppointment next thursday so I am going to have a serious chat with them and see where we can go from here. Part of the problem I feel with the OT services is that they are really short on OT's right now and the one we originally had was off on maternity leave so we only get one when there is room for us because she is so busy. I feel like we don't always get to see OT because my kids aren't as bad as others but I still want to be able to work with them on a regular basis so perhpas I will have to find a private OT and pay out of pocket.

Thanks again for everyones replies, I will keep you all posted and very much appreciate your input!

 

I was wondering if any of you guys do any of the extra vitamins or treatments other than early childhood intervention. I have been researching all sorts of things but am having a hard time trying not to get caught up in all the things they claim can help and what will and wont be beneficial.
Right now I give both boys multivitamins, omega 3 suppliments, probiotics and vitamin c and d for the most part we stick to a dairy free diet for my one twin and the other is just starting to get some dairy to see how it goes.
My cousin has a daughter that they have not been able to accurately diagnos yet but they think she is somehwere on the spectrum and may also have some terretes. They have payed thousands of dollars to have blood tested for allergies and yeast overgrowths etc. that isn't routinely done here so they had to have it sent to the US. She found out that there were no allergies found(so she quit the diets) and that there was a high yeast count in her girl so they are on anti fungals now to help treat the yeast. The problem is she had to wait to see our pedi at the center because no one else would prescribe her the recommended dose of antifungal that was recommended so she went months without treatment.
Also I was wondering when did you guys tell others that something just isn't right? My DH and I have never said anything to our families because we don't know for sure that there will be long lasting effects yet. DH mother is a totally worry wort and will flip out and play this huge pitty trip which I am not interested in hearing. Did any of you mention that there might be challenges to come? Part of me wants to keep waiting till I know something for sure but the other part of me just wants to make them understand why I have all the rules I have with the kids. It can be so frustrating!!